Navy Blue Elephant Trunks

World Prematurity Day//Bloggers Unite

2011-11-17T06:28:00.000-05:00

World Prematurity Day // Bloggers Unite

In years past on November 17th I have attempted to recreate the horror that was our lives as we supported Amanda through the NICU and the challenges we faced once she came home. This year, instead of going back there, I thought we should have a "Where are they now?" sort of update. Everyone likes those don't they?

To Recap: Amanda was born at 24-weeks via spontaneous vaginal birth. She was on a ventilator for about a month, had heart surgery, suffered a collapsed lung and a bowel obstruction before coming home from the hospital the week of her original due date on an apnea monitor. It was the longest three months of my life. FEAR ruled every waking and sleeping moment. At the ripe old age of two she was diagnosed with hepatoblastoma, a tumor in her liver. We participated in a study investigating whether some of the treatments she received in the NICU may have increased her likelihood of contracting this particular cancer. Was it due to her low birth weight or was it because she was given oxygen? We don't really know.

Skipping Ahead: Last spring it was suggested that Amanda's toe walking was more than just a delayed maturity of physical skill. Many kids will walk on their toes as toddlers and then eventually settle down into the more stable flat footed gait. At five, our girl was still up on those toes more often than not. She could walk with "flat feet" if we asked her to, but preferred to be up rather than down. We went to see a Neorologist who gave us the diagnosis of Spastic Diplegia, a form of Cerebral Palsy which effects the legs in this manner. She just didn't have a good range of motion in the area of dorsiflexion. Oh, and she also has ADHD-C which means she is both attention deficient AND hyperactive (the C stands for combined).

Over the summer we started preparing for her to start Young-5s Kindergarten. (This was a source of stress on us as parents considering as she grows up she will be older than her classmates by a year or possibly two. Not so bad now, but wait until puberty hits!) We started her on medication for the ADHD. We chose a long acting 12-hour pill so she would not need to re-dose during the day. Honestly, we've been through so much with her already we tend to be a wee bit over protective. Shocking, yes, I know. But, we just didn't trust the school or even our beloved daycare to remember every single day at a given time to provide the right meds in the right amounts. No offense to anyone but even if one staff member does it everyday, what if they are sick one day or they have a staffing change? No thanks, we'll just take care of this at home in the morning and she's good to go. (Do you see the level of over-thinking that has to go with every decision?) The good news is, the meds seem to be working. We increased the dose once school started and her teacher said she's doing very well in class and is able to attend and follow directions fairly well. She is not out of the norm for the other kids in her class.

She also started physical and occupational therapy at a local rehabilitation hospital. The physical therapy was to stretch out her legs so that she would easily and naturally put her heels down when she walked. It has been decided that while she does have tightness there (which later we found was not limited to her heels but rather tightness in the fascia (connective tissue between skin, muscles, organs, etc.) all the way up to her neck. By doing a myofascial release massage the therapist was able to get the full range of motion in her ankles. She gave us homework to do stretches twice a day and we ordered orthotic shoe inserts to prevent her from going up on her toes. The inserts in theory will retrain her brain and body how to walk so she doesn't want to go up on her toes anymore. She fought and fought the stretches to the point where the therapist had to teach me how to manually stretch her myself. Twice a day I need to coax and bribe and plea to get her to let me stretch those legs. It doesn't hurt her, it just *feels* better when she points her toes rather than flexes them.

This leads to our next topic, Sensory Processing Disorder. She is sensory seeking, she wants to FEEL the pull of her muscles as she hangs from the trapeze on her playset, the wind in her face and hair as she swings or goes down the slide, the tightness of her calves as she walks on her toes. Hey, what was that last thing? Yeah. Everyone pretty much agrees while her ankles are a bit tight and the stretching will help with that, she's up there teetering around due to her sensory integration issues. She just prefers to be on he toes. *slaps palm to forehead* We knew about the SPD when she started occupational therapy and were hoping they could work in as much sensory therapy as possible given the fact that such things are not covered by insurance...anywhere. It is still a "theory" made up by occupational therapists trying to explain certain behaviors which the medical community, or at least the insurance companies, have yet to recognize. There are three very good private therapy offices in our area where we could go and feel confident she was getting the appropriate sensory therapy for her needs, yet it will be 100% out of pocket so we started with the hospital since we had the referral from the doctor who diagnosed the Cerebral Palsy. We thought we would see just how far the insurance would let us go. Just far enough to start seeing a slight improvement and then drop therapy for a month before going back to the doctor for a re-assessment which will be after the first of the year so our deductible will zero out again. *ARGH!*

Oh yes, and she also went through an extensive neuro-psych evaluation which did nothing to make us feel better about our situation. Amanda is a sweet kid, very charming and fun loving. She is also a bit delayed in the processing and returning of information. Remember how Forrest Gump was just 5 little points away from attending public school and Missuz Gump had to ...persuade, shall we say. the principal to let him go to the mainstream class? Yeah, I see I may need to do some persuading in my future.

Which leads me to my next point, ADVOCACY! As parents we have spent Amanda's whole life advocating for her best interest. The staff in the NICU would put off providing this or that because "she hasn't declared herself yet" to which we would respond, "We are declaring FOR her". During her cancer treatments when they thought she needed iron and we couldn't get her to take it orally (Seriously, have you tasted that stuff? Who in their right mind would take it willingly?) we told them they needed to find a new way to get it into her because force feeding her made her throw up (the only time in 9 months of chemo she was ever sick was when we forced meds on her.)We have been fighting for our daughter since before she was born. We are used to fighting for her. Not in a Momma-Bear don't-threaten-my-cub way, but rather in a Missuz Gump way, my child will have the best opportunities I can provide for her because it is not her fault she has the issues she has!

Finally, the fighting. Fighting for her, fighting for her, fighting for her. We are now fighting HER. Late summer brought about the perfect storm of our house in a bit of disarray as we had guests for a couple of weeks, she started PT and OT, she started meds, she started school and switched to a new class at the daycare. HOLY CRAP that is a lot to load on a sensitive kid all at once. She started "declaring" herself through tantrums. Not just stomping her foot on the floor, though she does that too, but violently kicking us, the doors, the walls, hitting, scratching, spitting, screaming, crying tantrums that literally shake the house and can be heard from the street out front. "Luckily" she reserves these for home, not once has she done this at school and only occasionally at Grammy's house. She is declaring she needs help and we as her parents need to provide it. BUT HOLY HELL I DON'T KNOW WHAT SHE WANTS! She needs more sleep as she has trouble sleeping through the night and with the new school schedule cannot get a nap anymore but still. *Ack!*

Today she will meet our newest specialist...the behavioral therapist! (I hear horns playing and a glowing light shining from behind this woman's smiling face.) She has to be our savior because, DAMN, we cannot keep living this way. I think the sleep, sensory integration therapy (wherever that ends up coming from in the long run) and continued support for the ADHD and rigid schedule at home will help her calm down and return to the sweet loving dramatic funny girl she really is. Right now I have Dr. Jekyll and Mr. Hyde without the need for that pesky potion.

What does all of this have to do with World Prematurity Day? Everything. I'm not saying that people who have full-term babies don't ever have to deal with these issues but time after time when we meet new therapists, new doctors, new specialists and we describe her developmental skills, quirks or challenges they nod their heads and say, "Yep, that's a preemie thing." This preemie thing will follow us the rest of Amanda's life. It is truly the unseen birth defect. Cerebral Palsy, ADHD, Sensory Processing Disorder and Learning Disabilities are all MORE COMMON in kids born prematurely. The March of Dimes has worked tirelessly to provide the treatments that help more and more babies survive, however, these kids will more than likely require more services throughout their lives than their full-term counterparts. The March of Dimes has shifted their focus now to PREVENTION. If fewer babies are born premature, we can help resolve this issue. The way to prevent prematurity is to support expectant mothers even before they conceive. Help the moms, help the babies. Fairly simple. If I had been properly educated on the signs and symptoms of premature labor maybe we could have stopped it before she was born, or at least bought enough time to get the steroids for her lungs.

They say Amanda is a "Former Micro-Preemie" but I think that is something that will be with her all her days.

And They Lived Happily Ever After...

2011-04-26T12:33:00.001-05:00

Well, maybe it isn't THAT good, but things are looking up. Amanda has been accepted into the Young-5s class at the school we were hoping for, which means we can stay at our current daycare. This is a MONUMENTAL load off of my shoulders. The thought of moving her daycare and then having her start school within a couple of months is just too many big changes too close together for my girl to handle. I know she would get used to the new routine but the behavioral backlash during the transitions would not be pretty.

SO, good school and continued care from the people who already know and love her and will drive her to and from school means the world is a better place today. We'll be writing the new IEP in May and I believe the OT is now convinced she could use some classroom accommodations rather than an exit IEP. (Note that my word wasn't good enough, but a copy of the neurologist's report which said the same thing I said made an impression.)

We found out the EEG came back "normal" with no signs of epilepsy. I have asked our pediatrician for a referral to the Pediatric Cerebral Palsy Therapy program at a local hospital. I have not heard back about this which I am taking to be good news. If she didn't agree with my asking for the referral (I called the referral desk, didn't speak to her directly about it) she would have called me to clarify what it is that I am looking for. The therapy program will encompass physical therapy, occupational therapy and speech with sensory integration inclusive in these other therapies. I am hoping the SPD therapy will provide a noticeable result in her behaviors and ADHD-C symptoms before school starts in the fall.

I have been attempting to find a fish oil supplement that she would be willing to take. She is not able to take pills at this point so a liquid is my best bet as she would need to have 4-8 gummies at a time in order to get the recommended dose of fish oil. She is very picky about flavors and not great at brushing her teeth yet (another sensory issue at play) and the dentist recommended staying away from gummies as they tend to get stuck in and between teeth. This leaves the option of a liquid which we can mix into a drink or yogurt as the strong flavor will probably not win us a straight shooter. I did find Barleans brand has a Peach Mango Smoothie flavor which sounds perfect ...except I can't get it in town. I've read that the fish oils need to be continuously refrigerated in order to NOT taste like fish. I can order it from Amazon but that means it will not be refrigerated during shipping (and to be honest, I don't know that they are refrigerated at the warehouse either). The local health store said they have been trying to get it for a couple of weeks and can't get it. If only my daughter would tolerate lemon, orange or strawberry I would be perfectly set. Since she exists in order to make my life more difficult, she will not touch any of these flavors. There is one more local place I can try and then I may need to just cross my fingers, order it online and hope for the best in covering up the taste.

Now that I have my brain half-way working again I have started jogging in an effort to train for my first 5K in a matter of three weeks. Not just my first race mind you, I have never run before with the exception of high school PE class. Not pretty. My legs are screaming at me and my lungs are launching major protests. But I declared I would do this for Make-A-Wish and I will follow through on that promise if it kills me...which it might. According to the Couch-to-5K program I should be able to run a full 2-1/4 miles at this point. I didn't get in 1/4 mile on Saturday before I gasped, "What the F*ck did I get myself into?" Then promptly stopped talking as it required too much oxygen.

Wish me luck!

Meredith's Wish Run - May 14, 2011

Careful What You Wish For

2011-04-14T15:19:00.013-05:00

The Short Version

• Two New Diagnoses

1) Spastic Diplegia - A sub-classification of the most common form of
Cerebral Palsy.

2) ADHD-Combined type - Both inattention and hyperactivity/impulsivity

• Mere FREAKS out

• Mere slowly starts collecting herself again

The Long Version

I've been wanting...needing to write for a while but felt like I had to hold back now that I am no longer anon. However, Julie mentioned something the other day which opened my floodgates. I typed up a huge purging comment on her blog and then deleted it because that wasn't where it belonged. It belongs here, where it all began anyway.

I took Amanda to the orthopedist back in October to follow up on her knock knees which are no longer knocked. I asked at that time about her toe walking which her school physical therapist had recommended we check into. She has tight heel cords, she doesn't get full range of motion when she walks however she is able to walk, stand, sit, climb ride a bike and do what is physically necessary for school so PT through the special ed services at school has been discontinued. She is able to walk with "flat feet" if we remind her to concentrate on it, but her natural gate is on her toes. The orthopedist said she probably has a mild form of Cerebral Palsy and if we took her to the neurologist for a formal diagnosis we may be able to get more services for her, either insurance covered physical therapy or through the school again.

We had the neuro appointment at the end of March. The neurologist was a friendly bright engaging young woman (loved her!) who talked to Amanda, not just me. She said it is quite common for micro-preemies to have some scarring in the frontal lobe area of the brain. Seizures are not uncommon so she ordered an EEG (still awaiting those results). She agreed we should definitely follow up with the child psychologist on the ADHD but that the seizure issues could mimic ADHD. The EEG will determine whether we pursue anti-seizure meds or ADHD meds as treatment. She decided not to do an MRI at this time which could conclusively diagnose these issues for us but would severely traumatize my poor girl who is acting out like CRAZY right now from the two visits to the neurologist's office within a week (initial visit then EEG). The doctor had enough information from the circumstantial evidence to give the diagnoses.

She has Spastic Diplegia, which means both of her legs are affected, she may have normal intelligence (also to be checked by psychologist) but learning disabilities and issues with fine motor skills can be a problem for many patients.

The neurologist agreed the sensory processing issues seemed apparent as well however, Sensory Processing Disorder (SPD) is not considered a medical diagnosis in and of itself and therefore insurance will not pay for therapy. Let me explain how CRUSHING this feels. What I feel would do her the most good is sensory integration therapy. This will not be covered by insurance. Insurance will pay for "rehabilitative" therapy not habilitative. Meaning, they will cover her to regain a lost skill, but not to gain a skill she didn't have before. Our best bet may be a local hospital that specializes in rehabilitation which has a special program for Pediatric Cerebral Palsy Therapy which includes sensory integration therapy along with PT, OT and Speech.

Sensory Integration Therapy is my main goal which is not covered by insurance. There are a few very good private therapists in town and I will just have to figure out a way to pay for them because the sooner she gets help the better chance she'll have in school these first early years. I need her to like school and to continue to LOVE books and learning new things. She is going to need this resolve as I fear school in later years will be a huge challenge for her organizationally and just trying to keep up and fit in and feel equal.

It is my belief that the SPD is her main issue right now. She definitely has auditory processing differences, is sensory seeking, inattentive/distractible has multisensory processing issues...the list goes on. So, let's look at this. Trouble processing what her senses are telling her, inattention and highly distractible/impulsive. Sensory seeking means she is constantly trying to FEEL movement/touch/SOMETHING. Put these things together and they sound like a kid with ADHD, no?

I am not saying she doesn't have ADHD, but all the meds in the world will not fix her sensory processing disorders. We need to start with those first, I think if we can get those under better control the ADHD will be easier to manage and symptoms will be much less than they appear right now.

I went looking for these diagnoses believing they would help me get her the support she needs to continue to achieve and succeed in school. They recommended last year that she go to a special ed preschool. That did not work out logistically for our family and I chose to keep her in a private preschool/daycare class with itinerant (30-mins/wk) occupational therapy through our local school system. She has met 3 out of the 4 goals on her IEP and has made progress on the fourth. She is doing well. Next week is parent teacher conferences with her preschool teacher to be followed by two rounds of kindergarten screening. We will determine in the next month whether she will attend Young-5s or Kindergarten next fall. I don't really know what to wish for. I think she would do well in the Young-5s class and be more equal to the kids in that class but she will be almost 6 when the school year begins. Not so bad now, but down the road the difference in age will become more apparent.

Also, her occupational therapist said she is doing so well she doesn't need special ed help anymore. She can exit from the program. All fine and good, I am glad she's doing so well, but that means in order to get help again she has to show signs of not being able to keep up. Why make her fail in order to offer the support she needs to succeed? I want an IEP with accommodations for ADHD at the very least. Keep her in the system and under the watchful eye of her teacher and the school social worker. She will need the extra help, I am sure of it.

I learned to advocate for my daughter in the NICU five V-E-R-Y long years ago. I strengthened that skill in the pediatric oncology unit three V-E-R-Y long years ago. I continue to struggle with that on a daily basis only this time it is with medical and school environs.

Here's the thing. This whole business has been hard on me. I went into a depression over the past few weeks. Figuring out school for next year plus the fact that due to our school choice she will most likely have to change daycares and I LOVE our current daycare and do not want to leave. Not knowing whether she'll be best suited for Young-5s or Kindergarten and whether IEP accommodations would make a difference in that decision. I need to make all of these decisions final in the next month or so because if we move to the new daycare I want her to spend the summer there getting used to the new environment before school starts in the fall. Hoping she makes these transitions more smoothly than is her customary way. Looking ahead to our next cancer check which will send her off the deep end again behaviorally when we haven't quite pulled her back to "normal" from the neurology appointments yet. I need to find out what type of therapy she can/will get into and when that will happen so that I can determine what my own work schedule will be and hope like hell my company is Ok with it. As you can imagine, I have used the "I need to be gone because my daughter..." excuse a few times in the last five years and that might be wearing thin. I need to keep my job since our family uses my company's health insurance.

What therapy does she need? Where can she get it? When can she get it? Will the time and place of this therapy threaten my job? How are we going to pay for the therapy ? It cannot take place during school hours as that needs to be a priority.
I want to cry.
Why me? Why her? Hasn't she been through enough? Haven't we all been through enough? Just as Julie asked, having been through everything we have been through, aren't we deserving of an easy path now?
Yes...But...this is the path we are on, so we need to keep going. Can't really turn back now can we?

Next week should bring at least a couple of answers. We will have the parent-teacher conference with her Pre-K teacher and get her recommendations for next year. She will go through her first of two kindergarten screenings. Hopefully we will get the results of the EEG so we can begin looking at treatment options. I will feel better when we have a plan in place. Right now I feel like I am drifting and don't know which way to turn.

This is all a very verbal outpouring of what has been going through my head lately. Pictorially it would look like this. I am done stressing/depressing about it. I will get answers as they come, make decisions from there and hope for the best possible outcome. *crossing fingers*

Happy Birthday Sweet Girl

2011-02-17T06:00:00.002-05:00

Celebrating today what I could not enjoy 5 years ago.

Dr. Google Follow Up...

2010-12-13T13:38:00.001-05:00

Well, not really a follow up as that indicates I actually have more information than I did before. I do not. However, I have come to terms with the fact that IF she does get a diagnosis of Cerebral Palsy it will help her get special education services at school without having to re-qualify every 3 years. As it stands, if she is not behind enough, doesn't have a big enough delay at the time of qualification evaluation they can graduate her from services and in order to get help again later she would have to demonstrate the appropriate big enough problem in order to get help. My kid is smart and fairly talented, though highly uncooperative during testing, so she usually shows only slight delays. The CP would give us the shoe in without having to jump through hoops the rest of her school career to get the little boosts of help she will certainly need from time to time.

So, I have not heard from the neurologist yet as to when we will be getting the testing done but I think in the end it will be a good thing. She might not have it, if she does it is definitely a mild case, but it might be just enough to ensure she gets the extra attention and help she is going to need in order to succeed in school.

I am ok with that.

I will be checking into schools in January and will hopefully find a good fit for her for next year when I anticipate she will start either Young-5s or an actual Kindergarten class. We are not too excited about our home school district so I will be looking into charter schools and school-of-choice options.

Keeping my fingers crossed and hoping for the best.

Dear Dr. Google,

2010-12-08T11:20:00.002-05:00

My child has been referred to a neurologist to be tested for Cerebral Palsy. Please advise. I know nothing.

Telling myself not to worry isn't working either. I know it would be a slight case IF she even has it, I am concerned about a *LABEL* and what that could mean for her. At the same time, having that label could help provide services she could use, like physical therapy. I know my kid will never be normal but adding things to her LONG and SPECIFIC medical history is not on my list of things to do.

Crap.

The Girl Who Lived

2010-11-15T12:47:00.015-05:00

November is Prematurity Awareness Month. As part of that cause, I am
participating in the Bloggers Unite Fight for Preemies event to raise
awareness and hopefully support for our dear friends a the March of Dimes.

*************************************************
She may not have been facing down an unforgivable curse from He Who Must Not Be Named, but my daughter is a survivor in the truest sense of the word. She is either very lucky, or unlucky. I guess it depends how you look at it. Almost five years into this journey of parenthood we are still trying to figure out on which side of Karma we seem to have landed. I suppose our daughter could be seen as a one-trick-pony, but hey, what a trick!

Amanda was born at 24 weeks + 3 days gestation. We were surprised by the premature labor. The staff at the hospital was also surprised by the premature labor! I was hooked up to the monitors which were unable to register any contractions. We suspected a urinary tract infection, which can be quite common during pregnancy though I had never had one before. My water broke, they called the NICU and put them on alert. I was given a steroid shot to mature the baby's lungs before delivery and I was whisked off to a labor and delivery room. Things settled down for about 5 minutes. Long enough for all of us to take a deep breath and start thinking of a game plan when BOOM, here she came. They never had a chance to check to see if I was dilated. It was most definitely a "natural birth" and yet the most surreal experience of my life. It took around 20 minutes or so from start to end. (Not enough time for that steroid shot to be effective.)

Amanda was 1-pound 15-ounces and 12-3/4-inches long at birth. This is a large size for a 24-weeker! Her skin was translucent, she was covered in bruises and her eyes were sealed shut. She could not breathe on her own. I saw a quick flash of a red face before she was taken to the NICU and Tim and I were left in the delivery room alone wondering what in the world had just happened. We were traumatized and shaken and feeling very vulnerable and lonely. It didn't seem real at all. I said, "We have a daughter." I thought that if I said it out loud that would make it seem more real, but it didn't. We held hands and wiped tears from our eyes and just waited for someone to come explain everything. No one came.

The next several hours I spent alone in my hospital room on the maternity ward. I have never felt so alone. My room number was 911. I did not find this humorous at all. A Karmic joke perhaps? Tim went home to take the dog out , pack a bag for me and make some phone calls. I called my office to let them know I would not be back in that afternoon as planned, and I would need to take the next week off. "Oh yeah, by the way, I had the baby." Funny thing this having a baby when you weren't planning on it, it tends to change your plans. The nurse brought me a couple of Polaroid pictures of Amanda. The Neonatologist came to visit me and told me the baby was alive, if she continued to live through the first 24 hours that would be a major milestone. I waited for Tim to get back before I went down to see her. I couldn't walk yet on my own anyway.

That first trip down to the NICU was really scary. We learned how to scrub in, learned the rules and protocol and then had to be directed to her bed. I was looking at a room full of isolettes and I didn't know which one was mine. They said this baby, in this bed was mine, but how did I know that for sure? I just went with it. I should love this one because they said it was mine. The bonding was a long time in the making. I wanted to love her and I just kept working at it until it really happened.

We had planned on my taking a maternity leave and then returning to my full time job once the baby was born. Since we knew Amanda would be in the hospital for a good 3 months (if we were lucky enough that she survived that long) we would need to make some plans. We couldn't afford for me to just stop working and spend all day every day at the hospital. Working for a small company (too small to qualify for FMLA), that wouldn't work for them either. So, after taking a week off I went back to work on a reduced schedule and started a new routine. Visit the hospital in the morning, go to work, home for dinner with Tim then the two of us went back to the hospital before bed. Get up the next morning and do it all over again. I was getting up close and personal with the breast pump, freezing the milk, looking forward to the day when they would actually start feeding her instead of providing her nutrition through an IV. The entire three and a half months Amanda spent in the NICU I listened to "Harry Potter and the Chamber of Secrets" in my car. I had it on repeat and listened over and over and over without really absorbing what was being said. I felt comforted by Hogwarts and the wonderful rich voice of Jim Dale. It was my only escape.

I slept at night because I was exhausted, yet every time I closed my eyes I was right back in the delivery room feeling every ounce of anxiety and terror that I did in the moment of birth. I went to bed hoping the phone wouldn't ring in the middle of the night. It was a horrible existence. I learned what Post Traumatic Stress felt like. I learned that life as a working mother of a baby in the NICU meant that whether I was at the hospital, home or work I felt like I should have been somewhere else. I felt like I was constantly letting someone down. I felt like a failure in every aspect of my life.

Routine was what saved us. We found a rhythm and stride and just kept it up as best we could. Amanda's health would improve and then backslide. There were times we laughed and joked with the nurses and there were times when she was labeled "low stim" which meant we were to whisper and keep the lights low. We could look but not touch. We learned how to change diapers around cords and tubes and wires. Some to help her breathe, some to provide nutrition and some to let us know whether her heart was still pumping or not. We watched the numbers on the monitor more than we looked at her. The numbers told us she was still alive.

We saw other babies come and go, some went home with their families, others did not. I walked in one morning and headed to the back corner, "our corner" which turned out to be where they kept the sickest babies though no one told us this, only to find an empty bed. My heart stopped. Where was my baby? They had moved her to the "feeder and grower" area by the nurse's station. Later that night she was moved back to our corner with a bowel obstruction. The nurse had to bag her to keep her breathing. I felt as if I had been punched in the gut. That is what they call the "roller coaster" of the NICU. On the same day you get great news you can free fall at 100mph and wind up at your lowest point. You never know what will happen next. Milestones and setbacks happen at the same time leaving you reeling and not knowing whether to be happy or sad.

I left her in the hospital to attend my baby shower on April Fool's Day. (Another Karmic joke or just a convenient day?) I arrived late at the hospital one Saturday after walking in the March-of-Dimes WalkAmerica (now March for Babies). (We raised over $2400 that first time out. Oddly, since I no longer have a baby in the NICU the fundraising has become more difficult.) I spent the whole day at the hospital on Mother's Day just to be close to the one person in the world who made me qualify as a mother after so many infertile years of feeling pain and loss on that day.

Amanda spent 105 days in the NICU. She came home three days before her due date. She should have been born on 6/6/06. I think that date plays a part in our Karma flip-flops too. How could it not?

But she lived.

Just when we thought it was safe to consider ourselves parents of a normal healthy toddler, Amanda was diagnosed with Hepatoblastoma. She had stage IV liver cancer which had already metastasized in her lungs. It is quite possible that the cancer was connected to her prematurity, either due to immature liver tissue, her low birth-weight or even one or more of the treatments she received in the NICU. Karma (good or bad) found us once again as she pushed on through chemotherapy and a tumor/liver resection surgery. We found a routine again as a family with two working parents and a child in the hospital. I firmly believe that our experience from the NICU gave us an advantage over the other families in the pediatric oncology ward. We knew how to listen to the doctors and then ask the nurses for more detailed user-friendly explanations. We knew how to advocate for our daughter. We had fought for her life before, the other families were all new at it. While we felt it was highly unfair to be facing her mortality again, in a twisted way, it gave us an edge to have been-there-done that.

She suffered, we suffered, but again, she lived.

The research that has been done by the March of Dimes has made it possible for "lucky" preemies like Amanda to survive. They can save more and more babies these days. So, what to focus on now? Preventing the premature births in the first place. I wish I had recognized the signs of premature labor. If I had gotten to the hospital sooner, maybe they could have stalled my labor, at least long enough for those steroids to help her lungs. Maybe she could have cooked a little longer. Maybe we would have had a slower, less traumatic birth experience. Maybe she wouldn't have had to suffer as much as she did.

I believe that every preemie in the NICU must be Buddhist on some level for "all of life is suffering". They must suffer in order to live. Not knowing the full reason(s) behind the premature birth and not getting a reliable answer about how any future pregnancies might turn out and not intending to put another child through the torment of the NICU we decided that Amanda will be our only biological child. We heard of families who revisited the NICU with subsequent babies and gave wonderful glowing updates to the staff of how the older former-preemie siblings were doing. To me, this is child abuse at its most basic level. We felt we did not have a choice about whether Amanda had to suffer through that or not. If we gambled with another pregnancy and wound up back in the NICU we would have inflicted that pain on that child intentionally for our own selfish purposes. No. NO! It is just wrong. I had surgery on September 11, 2009 (there is that 911 number again) to have my tubes tied and an endometrial ablation to treat symptoms of my endometriosis. We have not completely ruled out adoption but as time goes by it is looking more and more like Amanda will be an only child. This is another huge blow, as we had always intended on having two children. The impact of this one premature birth is shocking as its effects are revealed in all aspects of our lives.

I will continue to support the March of Dimes in hopes that other babies, other families, will not have to suffer the way that we did. I will write for BloggersUnite as long as I can do it without hurting myself more in the process. (It's not easy.) This many years later, the trauma is still very real. The effects will follow us the rest of our lives both in her developmental levels which are SO CLOSE yet not quite up to age level and our own social/emotional ties. But we are the lucky ones. We brought our baby home. She can see. She can hear. Her heart defect healed itself. Her congenital eye disorder (Duane's Retraction Syndrome) is not so bad that it requires surgery and her vision is good. We are all so very lucky. We ended up on the good side of Karma in the end. (Please, please, please let this be the end!)

Amanda is beautiful and charming and smart and funny. I wish she could be known most for those things which make her special. Instead, I fear, she will always be known as The Girl Who Lived.

Bad Hair Day

2010-10-12T11:09:00.002-05:00

So I washed and prepped my hair this morning with the full intention of using my flat iron for the first time in a long time (finally colored my hair so the roots are not so blatantly screaming "I'm old"!) only to find, once I had my 10-minutes left before leaving the house, that the flat iron had never heated up! What to do with poofy straight-ish/wavy hair and no time? I spritzed it with water and leave-in conditioner, scrunched it a bit and pulled one side up with a bobby pin. It has not helped. As the day goes by, I am getting more and more frizzy. I am starting to look like Monica in the episode of Friends when they went to Barbados!

If only I had an umbrella drink

"Traumatic Birth"

2010-07-24T21:02:00.002-05:00

So I left a comment on this site in reference to my own birth experience and how I felt about it in terms of "trauma". It went something (exactly) like this"

The birth of my daughter was traumatic. Not because it wasn’t natural but because it was 16 weeks early. It was unusual in that as a micro-preemie she was born vaginally vs. via C-section. They didn’t even have time to check to see if I was dialated at all. I DID suffer PTSD following her birth and during the time she spent in the NICU. It was the worst experience of my life. But in time, through loving her and mothering her and caring for her I did get over it. Do I wish I had a long natural labor listening to music that I chose and spending time with my own mother, mother-in-law and husband as I labored? No. That was the birth plan. Things did not go as planned. Things went terribly wrong. But you know what? I made it through a bit worse for wear. My daughter lived and survived CANCER to boot! (The cancer is thought to be related to her prematurity.) My husband made it through (he was traumatized too, are there Dads speaking up as well?) and we have the family we always wanted…4 years later.
“TRAUMATIC BIRTH” is true in my case, not because things didn’t go as planned, not because I did not have the care I needed or deserved, but because my daughter could have DIED at any minute in the following 3-1/2 months…but didn’t.
I am now a healthy mom. I now have a healthy 4yo girl. I am over the PTSD of her birth and NICU experience. It DOES get better.
I do not tend to share my birth story when in the company of strangers because it is truly scary. Not just a “birth-plan-gone-wrong” but a true medical nightmare! Some think that medicine has no part in the birth experience at all. If that had happened in my case my daughter would have died immediately. I would not have my happy healthy blonde haired blue eyed mini-me that I have today. I am SO grateful for the medical staff who saved my daughter from the NICU staff right down to the OB’s receptionist who told me that I should go down to L&D “just to be on the safe side”. If I had not gone, my daughter would have been born in my office and she would not have lived. THANK GOODNESS for the amazing medical professionals who have cared for me and my daughter in the past 5 years.
I hope you all find the peace you are looking for, the peace that I have found with my beautiful funny and incredibly loving family.

What say you? Was your birthing experience "traumatic"? What makes you think so (whether you answered yes or no)?

I definitely think mine was overshadowed by the NICU and the whole "my daughter could die at any second" thought process that we held for about a year or so. To this day, if I realize that I have not heard her move on the baby monitor (4yo still has the monitor in her room) I listen intently to check whether she is breathing or not. I STILL wonder if THIS will be the day that I go to check on her or wake her up for preschool to find her dead.

That being said, it has nothing to do with HOW she came out of my body. It has everything to do with WHEN she came out. Do you think I would feel this way if I had been pushed/forced/co-erced/convinced to have a C-section?

This same thought is contrasted by the friend of a friend who went in for a normal prenatal checkup to find the baby had died in-utero overnight. If one day can make such HUGE differences for preemies in the NICU, it HAS to make a difference for babies past their due dates as well. Don't you think?

I don't know.

WAM 300: 2010

2010-07-22T12:40:00.001-05:00

The bikes are off and running (riding) again! Amanda is a wish hero this year so she has been matched with the team Carbon & Tux. We will great our rider at the finish line on Sunday in Chelsea after he has logged 300 miles on his bike in the next three days. This year they have added a feature on the website so that we can send messages to the riders while they are on the ride! I pulled up the page to send a few thoughts to the riders and who did I see but Amanda and Elmo! How cool is that? My kid is a serious rock star. Check it out here: WAM live messages . Having just returned from the third and final leg of our Make-A-Wish journey (couldn’t fit the trip in last summer) we are more grateful than ever for the generosity of the donors who make these wishes possible. Help us support Make-A-Wish and these riders in particular by leaving them a message or donating to Amanda’s rider here Carbon & Tux Team Page .

I promise to post specifically about our trip to Sesame Place as soon as I have a spare moment to get it typed up!

Health Note: Amanda saw the eye doctor this week who said her eyes are tracking together and have equal vision, still no need for glasses. Woo Hoo! She also had a physical and blood work done at the clinic and the oncologist said she is very pleased to see Amanda so healthy and still very much in remission. We’ll do another scan in the fall with her hearing test (yearly) and an echocardiogram (every 2 years). HUGE sigh of relief on both parts. Now we can relax and enjoy the rest of the summer in which we will attempt to go camping for the first time.

Mere :0)

We've Come a LOOOOOONG Way Baby!

2010-06-03T11:35:00.003-05:00

Four years ago today Amanda came home from the NICU. We thought the hard part was over. We were SO WRONG! Celebrating our beautiful funny affectionate girl today.

105 Days Old!

4 Years Old!

The roof, the roof, the roof...is a work in progress.

2010-04-09T19:23:00.001-05:00

Big Kid Underpants !!! Cringe

2010-03-13T19:34:00.001-05:00

Let the games begin!
At the encouragement of the child psychologst who teaches the Love & Logic classes we've been attending, we jumped into potty training with both feet. Drew a line in the sand. Made a firm decision. EEK! (Is it too late for me to run away from home?)
I couldn't find any 4T rubber pants. They go up to 3T or 35lbs. She is around 40lbs. So, she sits on a towel on the couch, I'll probably sit her on a plastic bag in the car seat & hope for the best. We think we'll stick with diapers or pull ups during sleeping times (naps & at night) until she has things under control during waking hours. She says she "needs Mommy" when she's wet & she gets changed. She picks the undies & dresses herself. We did push her to sit on the potty & counted to 3 then gave her 3 Smarties. If she gets to a count of 4 then 4 Smarties (or M&Ms or whatever). She doesn't like to feel wet so she will have to eventually lean towards the potty...right? Right?
The more comfortable we can make her with the potty the better. I asked why she tries at school but not home. She said our toilet "growls" at her. I told her we are here to help her & would never let the toilet hurt her.
I have dreaded this her whole life. I guess if I look at it as a laundry problem instead of a battle of wills we'll all be better off.
Not knowing whether to push her out of her comfort zone or let her lead the way has gotten us to where we are. If it were up to her she would just stay in diapers forever. To be honest, it is easier on all of us that way. *sigh* But, I need to shove my baby bird out of the nest & hope she starts flapping her wings before she hits the ground.
YIKES!

We have PIG TAILS!!!!

2010-01-24T10:07:00.001-05:00

All Kinds of Karma on the 12th

2010-01-14T15:22:00.001-05:00

We seem to have started out 2010 with a bang! After two straight weeks of
feverishly cleaning, packing and painting our house, we met with two
realtors who basically told us not to bother trying to sell right now as the
foreclosures in our area were driving down home prices and we really can't
get what we would like (need) for the house. SO, the new plan is to wait and
see what happens with the housing market in the next year or two and see if
in that time we can be ready to cut and run when the time is right. We do
want to buy/build a new home (I have been daydreaming about vaulted ceilings
and walk-in closets...and a dishwasher...and a garage I can park in) but the
time is not right for that just yet.

Amanda had her check up at the oncology clinic on Monday where she
thoroughly impressed her oncologist by knowing each of the numbers and
letters drawn on a piece of paper and reciting scenes from the latest
Snoopy/Super Why/Clifford episodes she'd seen. The doctor said for a
24-weeker Amanda is "EXCEPTIONAL". We knew that of course, but it is nice to
hear it from an objective professional. :0) The doctor also told her that if
she would use the toilet she would send her a very special wrapped prize in
the mail. Amanda changed the subject. The potty is a bit taboo with her
right now.

On Tuesday Amanda had her CT scan and hearing screening. These occur every 3
months to ensure if the cancer comes back we catch it good and early. If it
were to come back, it is most likely to happen in the first two years
following treatment. As we are just past the one year mark we are
tentatively sighing half a breath of relief. (This sounds a bit like an
optimistic whimper if you listen close enough.) The scans were completely
clear and she passed the hearing screening again with flying colors. (They
check her ears due to the one chemo drug known to cause hearing loss in the
high frequencies. So far, no deterioration.) The blood work for the cancer
marker (AFP) is supposed to be below 8. Hers was in the hundreds of
thousands upon diagnosis, it is currently 2.4. (YAY!!!!) We will now wait
four months before she has another scan and if that is also clear we will go
to every six months. One step closer to the path that will eventually lead
us out of the woods. (What exactly does out of the woods look like again?)

Tuesday morning, in the Envoy, on the way to the hospital for the scans, we
were rear ended on the highway. Running late and trying to decide how bad
the hit really was I knew Amanda was not hurt when she piped up, "Wow, that
was a BIG BUMP!" I looked in the rearview mirror to see a dark colored sedan
behind us with a man wearing a baseball cap at the wheel. I debated for a
few seconds and, angry that we would be late and probably miss the scan all
together, I pulled off onto the shoulder. I again looked in the rearview and
the car was gone, he'd passed me and accelerated down the off ramp. I
checked my mirrors again and, as Sherriff Roscoe P. Coltrane used to say, I
was in "Hot Pursuit"! I followed the car and got the plate number, then
turned down the road towards the hospital. I checked the bumper when I
pulled into my parking space. The bumper was cracked, scraped with paint and
a piece of the other car's headlight was stuck in my tow hitch connector.
The guy should consider himself lucky we didn't have the trailer ball in at
the time. Anyway, after getting through the scans (the most traumatic part
was when she FREAKED out at seeing the CT machine, they have assured me we
can give her something for anxiety next time) and then finally getting to
work that afternoon, I found out I had to take the truck up to the State
Police Post to file an accident report. I gave the information and the plate
number. They would have to send a trooper to track down the car. I received
the call this afternoon that the "suspect" is not living at either address
that came up under that plate number and his license is suspended. This
leads me to believe he probably does not have valid insurance either. Crap!
I can only hope that Karma will come back around to this guy and I hope he
learns he hit a mother taking her 3-year-old daughter to the hospital!!!!!
*Guilt-Voo-Doo-Guilt-Voo-Doo* Also, thank goodness the damage to my vehicle
is minor and neither Amanda or I were hurt in any way.

Tuesday night thinking about my bumper and the fact we have half of a house
packed and are now not moving and we did not yet have the results of
Amanda's scans I decided that I would trade the stupid bumper for negative
scan results. Putting everything back into perspective. *sigh* It also
occurred to me that the one other real car accident I have been in was on
October 12, 2005. I was six weeks pregnant and T-boned by an elderly couple
who tried to blame everything on me for fear the man would lose his
license...which wasn't valid anyway. The cop let them off and I didn't even
play the pregnancy card! (To this day I am convinced that the anxiety about
that accident and the stress it caused lead to the congenital
brain/nerve/muscle defect in Amanda's eye.)

So, things should be calming down now as the year progresses, but I may not
drive on the 12th of the month anymore. I did hear this morning they will
now have rickshaws downtown, maybe I can ride one of those instead.

Mere :0)

Because We Don't Do Normal

2010-01-04T15:01:00.001-05:00

We are meeting with realtors this weekend. We will pick the one we think
will sell our house the quickest. We are talking to builders. WE.ARE.CRAZY.
We have two trips to NASCAR and a trip to Sesame Place scheduled for this
summer.

Hi 2010, I think you will not last long.

Mere :0)

Santa-cycling

2009-12-22T21:01:00.001-05:00

I have come up with a new theory to cure the over-population of toys. Even before Christmas we cannot seem to find our livingroom floor. So, my idea is, Santa should have an exchange program. Leave one new toy but take five old ones with him when he goes. I believe parents everywhere would get on board, and it would be a hit with both the Supernanny and Hoarders.

Art Prize 2010 look out!

2009-12-05T11:54:00.001-05:00

Aaaaaand Here We Are

2009-12-03T14:41:00.001-05:00

There is simply too much to put into one post. See
www.mandameow.blogspot.com for the story of Azure's cancer journey leading
us up to this point.

She is healthy.

She is HIGHLY ENERGETIC (!!!!!)

She is and always will be amazing.

Azure/Amanda
Blue/Meredith

Nice to meet you. :0)

Vampires Strike Close to Home

2009-11-17T00:49:00.004-05:00

I was listening to the audiobook "Breaking Dawn" the other day, the final in the Twilight series of Teen-Vampire-Angst. **SPOILER ALERT** What hit me the hardest was not the end of the story, not saying good-bye to the characters. I was blind-sided by the traumatic birth and the fact that, following the birth of her baby, Bella was separated from her, for the baby's own good. Later, she has to go meet this baby who she doesn't yet know as her daughter, a stranger.
THAT'S HOW I FELT going into the NICU for the first time!!!! My daughter was shown to me for a fraction of a second before being whisked away to the NICU (with good reason of course) and T and I were left in the room alone. Hours later we went to meet our daughter. We were taught how to scrub in, put the hospital gowns over our street clothes and lead into the room full of brightly lit isolettes and warming beds. HOW DO I KNOW WHICH ONE IS MINE? I didn't know my own daughter, the one who had been a part of my own body that very same day. I had to rely on a stranger to tell me which bed to go to. I didn't know what I would find, I didn't know what she looked like. All I knew was that, at that point, she was still alive.
THAT SUCKED!!!! I have a bit of a love-hate relationship with the Twilight series of books, but this particular story-line got my attention. I GOT it, because I had LIVED it.
*sigh* I think I need to go back to simple fun books like the Harry Potter series or Anne of Green Gables or something.

Azure Update January 2009

2009-01-08T12:14:00.002-05:00

Well, let's see. I have not been writing here, as I said I would, basically
due to the lack of time/energy involved in doing so.

Let me bring you all up to speed on Azure's condition. She was diagnosed at
the end of June with a tumor in her liver that had already metastasized in
her lungs. Not good. Very, very not good. When the doctor looks at you and
says, "...but we always have hope" it is never good.

She received her first dose of chemo on July 1st. Since then she has been
going back and forth between inpatient chemo, which is a weeklong stay in
the hospital for her and myself, and outpatient chemo where she has to go to
the clinic everyday for a week. Running after an extremely active
2-year-old with an IV pole...not so easy. The good news is, chemo does not
effect toddlers the same way as it does adults, or even older children. She
has not had the nausea one would assume, just periods of being a very picky
eater. She did lose her hair and now has what one mother calls "halo hair"
which is almost invisible unless there is light casting from behind.

She had surgery in October to remove the tumor, the right half of her liver
and her gall-bladder. We were in the PICU for days following just to keep
her on IV pain meds. Remembering the desperation in her eyes when she was
in so much pain and I couldn't do anything to help her makes me ill. I hope
like hell she never feels that kind of pain again the rest of her life. The
pathology from surgery was not as good as we had hoped. They left some
tumor cells behind right at the edge of the resection and there were still
live cancer cells instead of all dead ones. For this reason and because of
the advanced stage of cancer at diagnosis they continued to treat her
aggressively with chemo. They are hitting her with the big guns that they
would have used later in the case of a recurrence. This meant back to the
schedule of alternating weeks in and weeks out of the hospital, usually with
a week or so in between to let her recover.

Along comes the week of Christmas. We learned that our collective Christmas
Wish had come true. Azure is in REMISSION! This means there is no evidence
of cancer either on the CT Scans or in her blood work. This is amazingly
good news and we celebrated the holidays with true joy. We had had enough
of 2008 and were looking forward to ringing in the New Year and good
ridance, etc.

Then she spiked a fever on New Year's Eve. Back to the hospital we went for
blood cultures, antibiotics and IV fluids. She refused to eat or drink and
felt down right crummy. They didn't want to let us go home until she proved
she would drink on her own, but she found the one and only thing she could
control herself is what goes in her mouth. She refused to drink. After two
days of turning down the IV fluids hoping to make her thirsty they made us
promise to push fluids and call if we thought she was getting dehydrated and
let us go home. She is feeling better now but lashing out at us in
frustration and anger in a way only a 2-year-old can do. She throws
tantrums with kicking, screaming, hitting, biting, etc.

It has not been easy. The past 6 months have been harder on us than the
3-1/2 months she was in the NICU. T switched jobs twice over the summer and
did not have vacation time available and we have health insurance through my
job which meant that I had to keep up 40-hour work weeks. Thank goodness for
my mother who provided both free daycare and took her to clinic appointments
and sat with her in the hospital when T and I both had to work. We are worn
out! People keep asking if we have thought about having another child yet.
Ha ha ha ha ha! (I actually have an appointment to speak with a surgeon
about either having my tubes tied or removing all but one ovary. IF we add
to our family it will be through adoption.)

Anyway, there is a light at the end of the tunnel. She has once again
proven herself a survivor. She lived through cancer, now we just need to
get her through the remainder of her chemo treatments without any infections
and we can move on to cancer prevention and follow up checks...for the rest
of her life.

Thank you all for checking in on us. The positive vibes are still working,
our girl is Amazing.

Unbalanced

2008-09-06T12:29:00.002-05:00

My major issue right now is feeling unbalanced and a bit out of control (duh). I am being pulled in too many directions at once. I listened to my audiobook of the 7 habits this week (you know those highly effective people from the 90s) and I am trying to implement as much as I can.

The roles in my life that are the most important right now are: Mother, Wife, Employee and Self. The Friend/Relative one can come and go from day to day depending on the circumstances. Let's take a look.

Mother: Azure is crying more and asking for me. She needs me. She wants me when she doesn't feel well. I want to spend as much quality time as I can with her. We are working on her ABCs and counting to 10 and she tries her hardest to sing "Row Row Row Your Boat". She can do these things with anyone. I can leave her in someone else's quite capable care and she would still be fine and she would still learn these things. However, she and I would both know that I was not there. I told the social worker at the hospital this week that if she is just getting some lab work done I do not mind letting my mother take her and I can stay at the office, but when she is getting chemo it is different. Even though the IV will drip whether I am there or not, it just feels like I should be there.

Wife: The house and my husband are both being neglected. Of course it doesn't help that AF showed up this week. I hear grumblings about this from T but actually, the reason AF is here this week is because I adjusted my pills the week we went to NASCAR so that she would not be an unwelcomed guest in our tent. So, you see, I cannot win. We are short with each other. We are doing our same cleaning, mowing, feeding the dog, getting by in the day to day of things but it is a struggle this time more than when Azure was in the NICU. Thinking back, I was working part-time hours then hoping to keep my vacation days to use as maternity leave when she came home. Now, since we have my insurance I need to keep my hours up around 40 and instead of a baby who only sleeps and eats I have a toddler who doesn't want to eat, who wants to watch Elmo 24/7 (which I cannot allow) and who throws tantrums (and throws her glasses and throws her food and throws her toys, etc.). It is just a whole different strain than it was the last time. I have tried a couple of times to arrange dinner out together so we could have some alone time. We enjoyed the food and the conversation but it felt like the date was one more thing to squeeze into our schedule. NASCAR was awesome and I am very glad we went but we came back and jumped right back into the work week and it has been full tilt since. We stayed up late (10:30!) the other night talking. I think we were starved for a quiet uninterrupted conversation. (This could probably said for the parents of any toddler. I am not saying that all of our issues are due to Azure's cancer, it is just a part of our lives right now.)

Employee: I want to name this one Valued Employee. I know they value my work and appreciate what I do...when I am there. They miss me when I am gone and are glad to see me when I get back to the office, even if I was only gone a couple of hours. *sigh* I love my job, I love the people I work with. I laugh out loud every single day. It can be stressful, especially now that we do not have a receptionist and I have to pick up the slack there too. I enjoy it. It is the perfect opportunity for a workaholic like myself. But, if I am going to be completely honest, the workaholic label does not fit quite as well as responibility-sponge. T pointed this out to me during our quiet conversation. I take on the load to do everything that needs to be done when in fact it does not HAVE to be me that does it. There are others in the office who could pitch in. If Azure were not sick I would not think twice about working the extra hours and taking it all on myself and showing everyone what I am truly capable of. But...she is sick and as mentioned above, she needs me. I keep thinking back to the saying, "When you're laying on your death bed you will not wish you had spent more time at the office, you will wish you spent more time with your family". This is true! I know this is true! It is just SO HARD to step back and leave what looks like a pile of things I did not do. I cannot be 100% everywhere. It just is not physically possible. This frustrates. me.

Self: I need to exercise, lose weight and sleep. I need stress reduction in the form of quiet time alone and when I can afford it, a massage or facial. I need these things. I am not getting them. I am sacrificing myself in order to focus on the three items above. It is a losing battle.

Married Working Mother I can handle. Married Working Mother of a child with cancer is proving to be a challenge. Time to get back into problem-solving mode.

A Bit of Whining

2008-08-26T11:57:00.001-05:00

I have tried to start this so many times and I just do not know where to begin. How to write about something so terrible? The child I yearned for, worked so hard to achieve and almost lost to a premature birth is now battling cancer. It is not fair. It is not right. It is just wrong all over the place. What did we do to deserve this, as I know she did absolutely NOTHING to deserve what she has been through. It boils down to my own selfishness. If I had not pushed so hard for children, then we would not have gone through the whole IF roller coaster. If I had pushed harder for adoption, then we would not have gone through the whole NICU roller coaster. I would not have my beautiful curious hilarious girl, but she also would not have suffered everything she has in life. She must be a Buddhist for; all of life is suffering. Yet, she is so quick to forgive. She cries and tries to squirm away when I give her a shot, but when it is all over and that H*llo Kitty Band-Aid is firmly attached to her leg, she clings to me and snuggles against me because she is convinced that I will make it all better. She has more faith in me than I do.

T and I often spoke while she was in the NICU about which side of Karma we were seeing. Was it the bad side since we were living through the nightmare of hospital visits, ups and downs in oxygen saturation levels, ups and downs of feeding tubes and residuals, etc? In the end, we decided that it must have been the good side of Karma since she came home. Now, T is wondering if we are back on the bad side again. My theory is that maybe we are on the good side of Karma since we keep going through horribly shitty circumstances but coming out on top.

Did we go through infertility and the NICU to ensure we appreciated our child? Let me tell you, in our family, the sun rises and sets over this child. Is the cancer a way to make sure we do not start to take her for granted? I cannot even begin to explain the emotions that go into creeping on tiptoes into your sleeping baby's room to check that she is still breathing. You are straining your ears for the slightest sigh to relieve the fear that this is the time that you will find her dead. Will it be this time or maybe it will be next time? You listen, holding your breath but unable to hear over your own thundering heartbeat. You get closer and closer, panic slowly rising, wanting to put your hand on her back to make sure that she is breathing, but gently and quietly so as not to wake her up! There lies the conflict. Make sure she is alive, but do not wake her up as you check. I cannot explain what that does to the psyche. The heart/apnea monitor alone did so much damage that it was MONTHS before we heard the microwave beep, or a truck backing up or certain cell phone ringers that didn't throw us into a panic even if she wasn't there at the time. We finally got over all of those things. We were settling into life with a toddler (as "settled" as that can be) and then cancer happened.

I am sad for her and for us. I am angry that there is no way for me to make this go away. As a parent, you swear no one will ever hurt your child if you can help it. I cannot help this. I can only hold her close and do what I can to advocate for her care. I wish I could spend more quality time with her but we have my insurance through work so I need to keep my hours up at full-time. They have been flexible with my hours and very understanding and concerned for her. I do get to go to doctor's appointments and chemo treatments. I wake her up and put her to bed every day but those are not her finest hours (Tired + Toddler = Tantrums). She is with my mother all day when I am at work. This is a fabulous arrangement and I could not ask for better care for her, but I miss her!

Blehck! There is so much more, and this seems to have rambled off track here and there. Suffice it to say, for now, this sucks. However, I do believe she will come out on the other side. I do believe that she will be a cancer survivor. I am just so sad that what we want for our daughter's third birthday isn't cake and presents and a clown or pony rides but more than anything, ever…remission.

Stumped

2008-08-21T16:21:00.001-05:00

Hmm. The trouble with wanting to write a blog post about how hard it is being a full-time-working mother of a toddler with cancer is that you never actually have the time to do it. I have many things I want to express but want to give it adequate time so that it comes out right. Will try again soon.

Yeah, So...

2008-08-15T21:07:00.003-05:00

Azure is rocking the chemo just like she rocked the NICU. Actually, truth be told, she is doing better this time around. At any rate, I started the other blog to keep family and friends up to date on the latest goings on but since family, friends and especially co-workers are regular readers over there I cannot express myself as completely as I was used to doing here at the bluetrunks site. So, I may start writing here a bit again just to vent out some things that I feel I should not do over there.
That was a really long way of saying, "Stay Tuned".

Then Things Went Wrong.

2008-07-06T10:41:00.003-05:00

So we were going to ride off into the sunset and watch our girl grow up to be all normal and stuff, but it didn't quite work out that way. She has had some occupational therapy to help with a slight speech delay and to refine some fine/gross motor skills, but other than that she has been a champ. People meet her and have no idea she was a preemie. Even the doctors are shocked when they meet her to find out she was a 24-weeker.
Then things went wrong...again. Azure has been diagnosed with hepatoblastoma. A tumor in the liver. It is rare for children to get liver tumors but if they do get one, this is the most common one for them to get. About 10% of cases have metastasized in the lungs upon diagnosis. Guess what, we have "nodules" in the lungs. We started chemo last week and are looking at a good six months of chemo, surgery then more chemo. It is treatable...if we caught it in time.
I have thought all her life that we were living on borrowed time and that we were never really meant to have her. I thought we cheated death when she survived her birth, then again graduating from the NICU, then again when her heart stopped at home and I had to revive her from her worst bradycardia episode. Never, ever, ever take your loved ones for granted. I believe she can beat The Big C, but it will not be a fun ride.
I am working on a new blog to follow our journey through treatment. It has nothing to do with fertility and I will not handle it the same way as this blog, so I do not want to link them. If you are interested, email me at bluetrunks at sbcglobal dot net and I can get you the new information.
Thank you for your continued support. It worked wonders last time, hopefully the same will be true again.

The Time Has Come...

2007-05-17T11:47:00.000-05:00

Way back in my pre-TTC days I was depressed and anxious and wanting to find other people who might understand my fears about TTC. I happened upon a group of FABULOUS gals from all over the US, Canada and even Australia and Japan who were also trying to start families while dealing with Endometriosis and other medical issues. We all seemed to click well with each other and had some issues with newbies flitting in and out of "our" message board so we defected and started a board of our own. Invitation only, password protected, etc. These ladies have been a wonderful source of strength and support for me.
One day, one of them suggested I read two blog posts. One by GetupGrrl and one by ALittlePregnant, Julie. I read them both and laughed until I cried. I was amazed at this whole new world that had opened up before me. I started clicking through blogrolls and found SO MANY women who seemed to understand what I was facing. There were veterans and newbies and people with such varying interests and accomplishments. I lurked for about a month, posted a few responses here and there and then I dove in head first. I started blogging myself.
My number one reason for starting this blog was my own selfish need to journal. I didn't have the time, energy or privacy at home to do it in a hand-written format and I really spent a lot of time thinking while at work, and once in a while I needed to be able to vent those thoughts while still at the office. I thought a blog would allow me the access from home or office and there would only be this little side complication of the fact that ANYONE and EVERYONE could read it. I decided that if Grrl could keep her identity to herself, so could I. So, Blue was born. I cannot remember exactly when I started, I do not know exactly how many posts I have posted. I do know that I am so very thankful I had this blog when I needed it most. That, of course, would be when Azure was born. The support I received was overwhelming and the advice was priceless. If it had not been for reading A Little Pregnant and Miss W I would not have been even a quarter prepared for our time in the NICU. My husband was in awe of my composure that first night, but I knew what I was looking at. I knew what to do. I knew what to ask because I had been through it already, with Charlie and the Lowercase. (See? I have gotten so lazy I do not even provide links anymore!)
All these years I have felt the need to write and the even stronger need to read other's blogs. That is, until now. I have been unsettled, unsure of my way and I looked to others for guidance and direction. I do not feel that way any longer. It has been almost a month and a half since my last post. I do not feel the need, or even the desire, to write anymore. I hate to make it sound like, "I got my kid! Life is great! No need for the blog anymore!" On the other hand, that is sort of how it is. I have written many times that this blog was going to chronicle my journey to become the parent of two children. I swore up and down that I would not stop after one child because that was not the end goal. There would be so much more to the story! The thing is, there may or may not be a second child. I hope there is, eventually an adoption story. I would very much like Azure to have a sibling. The adoption though is third on the current priority list.
#1 - Get out of debt (plan already in action)
#2 - Move to a nicer house/neighborhood
#3 - Adopt
So you see, there is going to be a good 3-5 year wait from now until adoption talk and I just don't feel I can leave this blog hanging until that time comes.
The time has come for me to stop writing. I do still have my bloglines subscriptions and will continue to keep up with the handful of people I cannot bear to walk away from. I do hope those of you who have gotten to "know" me will keep in touch via email (bluetrunks at sbcglobal.net). I will leave the blog up at least for a little while. I have gotten comments from new readers on old posts, especially dealing with preemie issues and the NICU.
This has been something I have thought about a lot in the last couple of weeks. I keep coming back to the same thought. I have been a big fan of Stephen King's series The Gunslinger. In it, Roland, the main character spoke repeatedly about how things had been in the old days, but that the world had moved on. I think that is what has happened to me. I have moved on from my blogging. Like leaving therapy, I feel it has been extremely beneficial and I feel a bit apprehensive about it, but I think in the end, it will be just fine. I still have the message board with my friends who post on a regular basis (none of whom know about this blog, except possibly one who is also named Blue and who just hasn't told me she reads this out of respect for my supposed anonymity). I think I will be able to look back at this time in my life and tell Azure that without the wonderful support of the Internets, her mother would have fallen apart just when she needed to be at her strongest.
I will be lurking and commenting from time to time.
I will not say good-bye, I will say, "See ya 'round!"
Thanks for Everything!
Blue :0)

After Falling Off the Face of the Earth...Again

2007-04-06T16:09:00.000-05:00

Well, I am happy to report that I have been so busy since my last post that I haven't even had time to freak out about Azure's eyesight. Many, many thanks to Miss W for her first-hand account of Duane's and helping me to calm the fuck down. It helped immensely! We will keep our eyes on her and have her checked carefully again in six months.

Since we last met the following things have transpired:

We took a family vacation three states away to visit T's brother, SIL, and nephews, one of which is a newborn. Holy Cow is that a tiny baby! At 6.5-pounds he seemed so minuscule and fragile. To put things into perspective, that would be an entire pound heavier than Azure was when she came home from the hospital! *gasp* That was ten months ago! How is that possible?

I have started working four 10-hour days with the intention of staying home one day a week with Azure. We can also schedule all of our (hers and mine) doctor's appointments on that day, thus preventing me from having to give my boss a color coded chart as to when I can actually work or not. Win-Win!

The transmission in T's car puked so we have been borrowing my MIL's HUGE VAN for the past couple of weeks while we are waiting for the repairs to be completed. Neither of us likes driving the HUGE VAN (full-sized conversion van as opposed to soccer-mom-mini-van). I have lucked out in the fact that the car seat is already in my car and I have farther to drive than he does so it just makes sense that he should have to drive "The Van-Mobile". Poor guy.

I took our nanny and my cousin to see the show "Chicago!" We had a blast. Before the show we were having a quick bite to eat in the lobby area and looking over people's shoulders at the items for sale at the souvenir counter. I suddenly noticed a tall man standing behind the counter wearing a black T-shirt and black baseball cap. I said to my companions, "Wow! That guy looks just like Tom Wopat!" Then I looked again and I said, "Holy Cow! That IS Tom Wopat!" I had no idea he was playing Billy in the show. I was totally blown away and actually a little proud of myself for recognizing him out of context. Now, you must realize that when I was six-years-old if I made my bed every day then I was allowed to watch "The Dukes of Hazzard" on Friday night. That was my allowance! So, to be standing less than ten feet from one of my childhood heroes when I didn't expect it threw me for a bit of a loop. I stood in line and waited my turn and when I got up to the front I told him that I had been a fan for a "long time" (not wanting to date either of us with the actual number of years). I bought one of his CDs and he signed it for me (with my name and everything!) and stood there while my nanny fumbled her way through trying to take our picture with my new cell phone camera. I was over the moon the rest of the day. I totally met Tom Wopat! The bad part is...neither the 22-year-old or 16-year-old that I was with had any idea who he was. They were all like, "Um, Okaaaaay." Sheesh, kids these days! When exactly did 32 become Over-the-Hill?

Speaking of my new cell phone, I got one of these. I LOVE it! I am all mobile and yet still all email and Internet accessible and it ROCKS! I use my phone more for email than for calling anyway so the full keyboard is fabulous, but I actually get better call reception on this than I did on my old flip-phone. Oh yeah, and it takes and sends still pictures and video which my grandparents love because I can send them up to the minute updates on Azure.

Speaking of whom...someone did not get her nap this afternoon and is now demanding my attention.

Whump!

2007-03-21T12:09:00.000-05:00

That, that sound, was the sound of the other shoe dropping. It has been coming. I have said it before. Things cannot possibly go this well indefinitely.

Azure is still thriving, she is still smart, she is still pulling herself up to standing (and letting go occasionally) every chance she gets and crawling all over the place. She is smiley and babbling like crazy.

But...

Houston, we have a problem.

Yesterday was our follow up visit with the pediatric ophthalmologist who has been checking her for ROP since long before she left the NICU. She initially had Stage 1 which cleared up on its own and her retinas are just fine now.

But...

She is showing more than one symptom of having Duane Retraction Syndrome, Type 1. A congenital neurological disorder of the eyes that appears in only 1-5% of the population. In essence it is a birth defect caused by a teratogenic experience somewhere between 3-8 weeks gestation. (Common causes are Thalidomide or Fetal Alcohol poisoning, neither which explain why Azure has this.) The only thing I can come up with is that 4 weeks past IUI, I was in my first ever car accident when an elderly couple T-boned my car while I was out at lunch one day. The day before my "6 week" ultrasound at the RE's office. Could that car accident be the cause of Azure's eye disorder? Not the actual impact, I walked away without a scratch (though my head was a little tender where it hit the side window), no big deal, but what about the stress and adrenaline? My car was fixed and back on the road in about a week and as far as we could tell there were no consequences for the pregnancy at the time. (The other driver was found at fault but not ticketed despite the fact that he did not have a valid drivers license.)

But what if...

*Deep breath innnnnnnnnnnnnnnnnnnnnn, Holllllllllllllllllllllllllllld, Exhaaaaaaaaaaaaaaaaaale*

Like I said, my daughter is gorgeous and happy and the center of my world. She may have to get used to wearing glasses in about 6 months or so, but those beautiful blue eyes will still twinkle when she smiles.

How Blue Got Her Groove Back

2007-03-06T11:11:00.001-05:00

I wrote a short while ago about how I was having to work at my marriage for the first time and never had any time for myself. I guess that was not entirely accurate. We have worked on our relationship all along, I just never focused on it before. For the most part, it has been an easy time the past 19 years (6 married). Things are better than they were even a month ago. I credit the fact that I have been actively trying to spend time with T. I saw us sitting at opposite ends of the couch and I got myself up and moved over next to him. I stop him when we pass each other in the kitchen and give him a hug and kiss, just because. I have read that making LOVE into a verb can do wonders for your relationship. I think I am finding that is true. For T’s part, he has started watching Azure so that I can go to the gym. This is a HUGE thing for us. He is spending time with his daughter and getting more comfortable caring for her and I get time. to.my.self…alone (Ok, technically I am surrounded by other gym-goers, but plugged into my headphones I am in my own little world). Ahh. Now that is the ticket! We have also made plans to spend some time together, specifically, he is going to help me improve my chess game.

Step two. I remembered a passage from a book I read years ago which said if you think of yourself as a sexy confidant woman, others will see you that way too. Now, I have 40 or so pounds to lose (again), so I have imposed the fake-it-until-you-make-it theory. I have a little help with this as well, since I just got my first pair of black square-toed cowboy boots and I am living it up. I LOVE them. I also died my hair. My natural blondness has been darkening over the years and I almost lost it all when I cut my hair last summer. Since then I have tried a few different lightening/highlighting products, none of which I really liked. I finally just died it blonde which I liked, until the roots started showing. Blehck! So, I thought I should find something a bit closer to my natural color. Not brown, but a bit darker than my beloved golden locks. I went red. I am now "Blush Blond" and I love it! I was strawberry blond as a baby and everyone always wondered if I would be the red head in the Irish Elephant family. Now I am. Basically, I have put a little swagger in my step and my mood is improving! Yay!

Step three. T and I talked about how we BOTH individually have felt the weight of the world on our shoulders over the past year (me taking care of Azure 24/7 and he doing EVERYTHING else) and how we feel that we are at the point where we can start getting our old lives back. The life we had before Azure was born, the life we wanted to add her to. We are attempting to leave behind Preemie-hood and move forward to Family-with-a-toddler-hood. We also are actively working our way out of debt. His goal is to move to a newer house in a nicer (safer) neighborhood. My goal is to afford an adoption after that move. Win-Win.

In other news, my kid ROCKS! She had surgery last Thursday to repair the damaged tissue on her arm from the electrode that first week in the NICU. Not only did she do a fabulous job before the surgery (considering there was a two hour delay and she was not allowed anything to eat or drink) but afterwards as well. She has an immobilizer on her arm to keep her from pulling at the stitches/surgical glue and she has adapted to it SO easily. She is still pulling herself up and crawling all over the place like it is not even there. She fights me when I put it on her, she would of course prefer that it not be there, but it doesn’t seem to phase her in the least once that Velco is sealed up. I am so impressed with my daughter I do not even know where to begin. We even had our first (and hopefully last) experience of pooping in the tub an Sunday! While I might have been overheard to say, "Oh!, Oh Wow!" I did follow up with a quick, "Mommy is not mad at you Sweetie, we just need to get things cleaned up a bit." All the while I was thinking, Oh Gross! Ewwww, Bleaeaeahck! I suppose I knew this day would come, and now it has. Check that one off the list of milestones, write it down in the baby book and move on.

This Week

2007-02-20T16:04:00.002-05:00

Valentine's Day - Loved it! My 19th as T's Valentine. I got me a goodun.
A First Birthday - Loved it! With cupcakes, books, toys, clothes and so many people who care about Azure. Just fabulous.
A Decision was made- Azure will not have a biological sibling. *Whew!*
The Daytona 500 - WTF? It was Mark's big chance, where the Hell did Harvick come from on the final lap?!?!?!?!
Awaiting a new nephew - Any time now...
New stuff at work which I cannot write about because it is about work but man are we shaking things up!

Deep Thoughts by Blue Trunks

2007-02-13T15:26:00.000-05:00

Lately I find myself contemplating things. I have not made any firm decisions but I do seem to be leaning in particular directions. This is a new thing for me. I usually rush to make a decision and then either stick by it or change my mind later based on new information or greater perspectives.

I have been offered the chance to work a flex-time schedule. I would work 4 days a week, 10 hours per day and have one day off during the week to spend with Azure. The immediate emotional response to this offer was, "Yes! Of course, yes!" but there is a lot more to consider. The nanny who relies on working for us two days each week for her livelihood. The fact that the nanny and my parents would need to start watching Azure an hour earlier each day they have her. The fact that those things that I do in the morning would now have to be done the night before because there just wouldn't be time otherwise (and no, I will not get up an hour earlier than I do now. 5:30am is early enough, thanx.) Will my tight stressful schedule actually relax with one day during the week to schedule doctor appointments, run errands, clean, shop, read(?), go to the gym (?), actually take time for myself (?)? In the end it might work out for the best but it all seems so overwhelming to me right now. There are many factors to consider and I want to make sure I don't skip over anything in my rush towards the four-day work week.
Azure is turning one year old on Saturday. We have been in a rush to finish working on the basement so that it will be finished for the parties. Yes, that was plural. My husband has decided that we cannot fit everyone in our house for one celebration so we are now locked into four separate parties. Two at our house, one at my parent's house and one at a restaurant. I figured we would keep it simple and buy all the food heat n' serve style but we both missed some time off of work last week and had some car repairs and a vet bill we were not expecting so the money is a bit tighter than we thought it would be when we (I) first started planning things. These might turn out to be very casual affairs.
Poor Maggie-Dog ended up spending the night at the vet last week. She was chasing her tail and licking herself more than usual. It was obviously bothering her. Turns out she had an infection in one of her anal glands. They had to sedate her to empty it and she is now on antibiotics. She doesn't need the pain pills anymore but she is drinking like crazy and eats snow the second she steps outside. T was shoveling the driveway last night and I said we should just let Maggie eat it clear. Win-Win! EXCEPT...she also has to PEE all the time now that she is so thirsty. How is it that I am blessed with a baby who sleeps through the night with only rare exceptions and I end up taking my dog out in the freezing cold at 3am so she can pee and eat more snow? Something just isn't right there. Oh, and T slept through it all, didn't know I had even been out of bed much less got dressed up in coat and boots and took the dog out! Brrrrrr!
We have scheduled the reconstructive surgery for Azure's scar. She has a scar on her upper arm from a lead the first week in the NICU when her skin was so sensitive (transparent). We have the approval from all of her doctors including the cardiologist. They suggest it is better to do it now before she is so active she could rip out the stitches. Ummm. Yeah. She is SO mobile! She is crawling and pulling up to standing and letting go and falling down. She has NEVER not been active. We'll see how that goes. Anyway, I am now in that state of questioning whether I made the right decision regarding the surgery. While I am 95% convinced it is the right thing to do and better sooner than later I just heard about a friend's husband's surgery that went horribly wrong and he is now in BIG trouble in the ICU. Very scary stuff. His was a different type of surgery but you know how these things transform in one's mind to all be the same thing and scary and lead to freaking right.the.Hell.out.
Valentine's Day has me thinking that T and I have been so busy with the everyday-ness of our lives that we seem to have lost our romantic closeness. I do not mean sex, though that happens less these days too. I mean we bought a big sectional couch a year ago (while I was still pregnant) with the thought that we could snuggle together on it rather than have one person on the couch and the other person sitting in the chair across the room. So where do we find ourselves sitting? In the diagonal opposite corners of the new couch! Actually farther away than we were before! I want to do something about this. I have found myself working at my marriage which I have never had to do before. Then again we will be celebrating our 7th anniversary this fall. I do not believe in the seven year itch, especially since we have been a couple for almost 20 years. I just miss him and our time together.
All of these things have me contemplating the second child issue again. (I know, you are thinking, "Blue! Enough with the 2nd kid debate! Make up your mind and be done with it!") The thing is, my entire life and then as a joint decision with T my life plan was to have two children. Now I am not so sure. This is new territory for me so I need to think about it carefully. As much as I like the idea of giving Azure a sibling, (And to be perfectly honest, I want her to have a sister. Nothing against boys per se, but I would just LOVE to see two little girls playing together.) I am just not sure I want to add the additional work and chaos to my life. At least not right now. (Again, you are thinking, "Blue! No one is holding a gun to your head. You do not have to make this decision right away!") Which of course is true. However, I have decided that my progesterone-only birth control pills are not working for me and so I need to come up with another option. My favorite choice being a copper IUD but that is an expensive and long-term option if I decide to change my mind in a couple of years. *sigh*
Finally, I feel so badly for A-N Smith's daughter. She lost her brother, her mother and is now going to be dragged through several court battles to determine who will get to raise her and where and with or without the money. She will be plagued by the events of the past year her entire life and she didn't even get to know the people involved. She will be told by others about her family which will of course color her view of them. It is just a shame. Poor girl who never asked for any of this and doesn't deserve it.

Do you see why I am having trouble sleeping at night? All of these things swimming around in my head and I just cannot stop them. I need to hire a personal assistant to think for me so I no longer have to do it.

Out of Nowhere

2007-02-02T12:51:00.001-05:00

The other night T and I sat down to eat dinner and enjoy one of our favorite shows According to Jim. This particular episode included the birth of Dana's baby. Her water broke while sitting at the kitchen table and Jim had to take her to the hospital. My first complaint was that she grabbed the top of her belly when her water broke. It may not be the case with everyone, but when my water broke I felt it MUCH lower. My second complaint was the fact that when she walked toward the door, she looked awfully dry for someone whose water had just broken. T and I exchanged a look remembering the giant gross puddle I ended up sitting in when my own water broke. I know some people feel a trickle, mine was a "massive rupture". I forgave the show quickly however when they had Jim slip on the "wet" kitchen floor, but that is probably just my own sick sense of humor.
So there they were, at the hospital, Dana in labor, stuck with her BIL instead of her husband or sister for support. T said things were turning bad, very bad, and he may not want to watch the rest of the episode. They didn't actually show any part of the pushing or birth, but it put us right back to our own experience last year. Last February. Almost a full year ago now. (How did that happen? My how time flies when you spend a full quarter of the year in the hospital with your baby!)
We discussed it a bit. How on that Monday I had suffered from back spasms which I thought were due to the long car ride home from our Valentine's Babymoon weekend up north. I called T at work and told him that a co-worker was taking me down to L&D just to be on the safe side. I told him to stay at work and I would call if he needed to come down. I was given an Rx for Vicodin and told to call my doctor if I felt regular contractions or had bloody show, etc. and I went back to work the rest of the afternoon. That same evening T and I went to our follow-up ultrasound to check the volume of amniotic fluid. It looked just a bit high, not bad. Oh, and by the way, the baby was head down. (I actually thought how strange it was that the tech pointed this out, we still had 16 weeks to go, the baby will surely flip and move quite a bit before we need to worry about her being in the correct position. No?)
I never filled the script for the Vicodin and by Wednesday the back spasms were completely gone. I remember because I had a massage that day and I was telling my massage therapist about them but that they were better.
Thursday afternoon I started feeling menstrual type cramps. I remember feeling rather horrible all evening. I propped myself up on the couch to rest my swollen feet and worked on organizing my new and improved filing system for bills, etc. I slept like crap that night because I was constantly getting up to pee and could not shake the pain in my bladder. Ugh!
Friday morning I listened to Azure's heartbeat (which was just fine) on the doppler since I was concerned there wouldn't be enough room for her in there with all the added pressure in my belly from what I thought was my first ever bladder infection. (I kept repeating to myself that UTIs are common in pregnancy.) I went to work.
We were busy and short staffed that day so I put off calling the doctor until a more convenient time later in the morning. My friend at work told me I looked like I was either sick or in pain. I said, "Yes!" I finally decided after yet another trip to the bathroom that I couldn't put it off any longer. They told me to go down to L&D to get a urine test, again, just to be sure. The same co-worker offered to drive me down to the hospital again but as I was actually feeling BETTER than I had on Monday with the back spasms and I didn't want to end up at the hospital without a car again I convinced him to let me drive myself. To this day I do not think he has forgiven me for this. He feels so incredibly guilty for letting me go off on my own. What if...
I called T on my cell as I was pulling out of the parking lot and told him I was on my way back downtown. He said if it hadn't been the second time that week he probably would have stayed at work again. Thank goodness he didn't. If he had waited there would not have been time for him to get there for the birth once things started to happen. If he hadn't been there already he probably would have gotten a call from a nurse saying I was in labor and he would have killed himself in a high-speed crash on his way. If, if, if...
As we were rehashing all of these details, sitting snuggly on our livingroom couch, I began to shiver. I actually got the shakes just thinking about it all again. I am talking full-body shakes that made my voice quiver. Recently, I had been thinking about posting about how I thought I was over the trauma of Azure's birth. About how I can go pick up her prescriptions from the hospital pharmacy and look up at those windows on the 8th floor, and know what is happening behind those panes of glass with their partially drawn vertical blinds without feeling sick. About how well I am doing now. I guess I need to qualify that with mostly. I am mostly over the trauma, I am mostly doing well. It is just every once in a while something like a TV show, or a comment, or a glimse at an early picture can send me right back to where I had been.
The thing that is helping me the most is Azure's continued progress. She had her check up with the early intervention nurse yesterday who had given us a test to complete with her. I was concerned only with the communication since she is not saying the ma-ma, da-da, ga-ga sounds they asked about. The nurse told me this was no problem since she is quite verbal and saying the vowel sounds (vowels are more important than consonants apparently). She said, "She isn't delayed in anything!" My beautiful, brilliant, getting-more-mobile-every-minute daughter no longer needs early intervention services because there is nowhere to intervene. She is right on target for her corrected age. Could she need help in the future? Sure, maybe. We'll cross that bridge when we come to it. Right now, she is perfect. I keep telling people she wasn't premature, she was advanced placement! (She IS descended from a Nobel Prize winner afterall!)
She is helping me to heal. She is saving me yet again.

The Girl is Growing Up

2007-01-30T12:24:00.001-05:00

This past weekend we discovered that she:

weighs 15 pounds 7 ounces and is 26 inches long

has two teeth erupting through...slowly

LOVES those puffy star finger food things

can sleep quite well in her crib in the nursery as opposed to the bedside bassinet

can without fail poop extactly one minute before we need to leave the house

Here she is seen playing with her favorite part of this tummy time toy. The red button which makes it switch from the floor position to the upright play-gym position. Who needs bells and whistles when we've got red buttons?

Here she displays the fact that her own feet are no longer good enough to chew on now that she has teeth. She has moved on to bigger and better (?) things, meaning my own feet. Let me tell you, having your big toe bitten by a two toothed tot gets your attention!

What Cecily Said

2007-01-22T14:26:00.000-05:00

and I wasted all that birth control...: National Blog For Choice Day

One Lump or Two?

2007-01-19T16:43:00.001-05:00

Julie posted about wanting a second child and wanting another pregnancy as the means of getting that child. I did not feel right leaving my entire response in the comments because, as I have become aware, my replies seem to be quite self-centered and in this case, long winded. This is the place where I should write about myself. So here goes…

T and I have agreed not to discuss having a second child until next summer. This will hopefully get us to a place where we are more stable financially and more balanced in our day to day activities. Right now we are flying by the seat of our pants trying to get everything done while we are both working overtime and trying to spend as much time with Azure as possible. This is not easy livin’.

We have discussed it some, enough so that we know that we agree on several points.
#1 – We are both turning 32 this year. We would like our child obtaining via either pregnancy or adoption) to be completed by the time we are 35. We do not want to be in our early 40s with very young children.

#2 – We are both terrified of a second pregnancy. I have been told that 13 weeks into pregnancy my doctor wants to place a cervical cerclage. I foresee bedrest and another preterm birth. Who would take care of Azure while I am on bedrest? My mother would be the natural choice but I cannot and will not just assume that she will do this. If she volunteers to do this and makes that commitment to our family and to the prospect of another grandchild I may take her up on it, but I will not ask her to do this.

#3 – We do not want to go through the NICU experience again. We did it once and we got through it relatively easily. We had WONDERFUL nurses to support us and my parents went to visit Azure several days a week so she had family with her every single day even once I went back to work. But, we again have Azure to think about. She would not be allowed in the NICU, which means someone would have to watch her while we were at the hospital. We also have Maggie to think about. Our poor dog who has been through so much and has suffered by not getting the exercise she really should in the past year. She is a special needs dog. She requires special attention. I would not have it any other way, I love her dearly and do not want to do this to her again. I also do not want to do that to the new baby. At this point, I have to assume that any future baby will have a stay in the NICU and that would be something that we inflicted upon him or her. I cannot willingly do that to someone, especially my own baby. I would have given anything if I could have suffered through the hospital experience instead of Azure but there was nothing I could do about it then. I can choose not to do that to my next child.

#4 – As much planning as we could do to prepare for possible bedrest situations, there is nothing we could do about the anxiety we would both feel about the pregnancy itself. I fear a self-fulfilling prophecy of worrying myself into preterm labor, or the funny farm. I do not like either option. It would not be good for our marriage or for Azure.

#5 – We feel like we have hit the jackpot with Azure. She is a happy, healthy growing little girl who brightens up our lives and has completely captured our hearts. As much as we would like for her to have a sibling, we cannot expect to hit the jackpot again. We are afraid that we used up all of our Karma getting her home safe and healthy. We both remember all too well walking into the NICU and seeing empty beds, which housed babies the day before. We knew which ones went home and which ones did not. Those memories stick with us just as much as the good ones, maybe more so.

I am afraid to attempt another pregnancy. I think T feels the same way.

I am also starting to question my own motives for wanting a second child. I want it for Azure, so that she will have a sibling, not so that I can experience having another baby. I want her to have someone to grow up with, to play with, to conspire with, and against. I want her to have what I did not have. Is that a good reason?

This leads us to adoption. Second Child sans Pregnancy equals Adoption. (Surrogacy seems to freak T right the fuck out so I do not see us going down that road.) As much as I was ready to sign that deposit check and get the adoption show on the road before we conceived Azure I find myself hesitating now. Partly because I am so happy with my daughter and I wonder if I really want to go back to the mindset of wanting a child. I struggled under the mental and emotional weight of infertility for many years. I am no longer in that struggle and, like high school, I do not wish to go back. Even knowing what I know now, I do not want to put myself in that position again.

We cannot afford to adopt right now and a second child would mean me quitting my job to stay home since the daycare for two kids would eat up my pay anyway. So, we need to get to a place financially where we can put some money away, quickly, for an adoption to take place in the next three years or so (to fit into our age 35 agreement). I would be willing to adopt a slightly older child, maybe up to 6 years old, but this child would have to be younger than Azure at the time of the adoption. This of course would allow us to push back our own age limits the older the kids get, see?

I can also see us putting off adoption in order to save the money and then never getting around to it. If that turns out to be the case then I think I would be Ok with that too. I can see us living a very happy life with Azure as an only child. I could allow her to have friends over to play and take a friend along on family vacations, etc. I can see us having a child and a dog and having a very happy comfortable life. As long as I do not get to midlife and regret not having another child, I would be the happiest woman alive. That is another fear I have. I fear future regret. I do not want the 62-year-old version of myself to look back and call the 32-year-old version of myself a coward.

To Summarize:
I fear pregnancy.
I fear raising an only child.
I fear we will not be able to afford adoption in the time constraints we have allowed ourselves.
I fear looking back and regretting the decisions I am making now due to fear.
I have about five months to figure out my position before T and I begin discussions.

Wish me luck.

Ghack

2007-01-18T12:45:00.000-05:00

I am still sick. The labyrinthitis has cleared up so I can look at immovable objects and no longer think that they, or I, am spinning. However, the cold/flu which brought that on in the first place is still here/back again. Crap! T is still/again sick and worse than me. We have been battling these ills for about a month now and we would both very much like to feel better. We continue to work overtime and take care of Azure and the dog and somehow keep the household running. There has to be an end, really, sometime soon.

Azure has amazingly remained healthy and happy. How does she do it? I have decided she actually exists in a different dimension. She keeps coming up with the best case scenario. She has officially started teething though there are no actual teeth as proof just yet. The copious amounts of drool that was her everyday norm has been turned up a notch to Holy-Cow-The-Drool! status. She has a runny nose and bright red cheeks and is napping when it suits her fancy. She is LOVING the solid foods and has started to plump up a bit. She actually has a belly now! She has also started trying to crawl. I say trying because she has only been able to scoot herself backwards so far. She'll get there soon though, she is ready to go. She hates to sit still. I must babyproof!!!!!

I would love to make this a nice long post but I just feel like crap and can't think straight. This is my fourth attempt at writing even what I have here so I think we'll leave it at this.

Grounded

2007-01-11T08:39:00.000-05:00

I have been grounded. Go directly home, do not pass go, do not collect $200 and for goodness sakes do not drive yourself!

I was right, I have Labyrinthitis. Resulting from the still present sinus infection (my first ever officially diagnosed sinus infection!) and all the pressure built up in my Eustachian tubes. I had my mom take me to the med center yesterday so that I could get the pills I had last time that made the world stop spinning so that I could drive myself to work today. Trouble is, the doctor said I am still contagious and I need to rest to get over this thing so he wrote me a doctor's note saying I should not go back until Monday. I actually have an honest to goodness doctor's note excusing me from work for the next two days! I feel like I am in elementary school or something! I would go to work if someone would drive me. See, the pills I wanted that make the world stop spinning so that I can drive are also a strong sedative so I am not supposed to drive while taking them. !!!!!!!!

My mother came this morning and took the baby for the day, she would have had her all day while I was at work anyway so no big strain there. I am now home, not supposed to drive and no baby or husband around. Just me and the dog. I have been wanting a day like this so that I can get some things done but I am supposed to be resting. T said he is requiring 75% rest, the other 25% can be chores done slowly throughout the day.

Time to nap. ZZZZZzzzzzzzzzzzz

WHEEEeeeeeeeeeeeeeeeee

2007-01-10T10:52:00.000-05:00

I have a cold/cough/flu sort of thing. I think it may have taken up residence in my inner ear since I awoke at 2:30am to the feeling of the room spinning wildly about me. Yes, I was laying down at the time. No, I was not drunk. I FEEL drunk though. I did go into the bathroom thinking I might revisit what was left of my dinner but the nausea passed. I am left with the vertigo. I have had this before. It is called Labyrinthitis. Fun stuff. They give you pills to make the images your eyes are seeing correspond with the messages your brain is receiving because if they don’t you feel, well, tipsy.

How many computers are sitting in front of me right now?

How many attempts did it take to write that last sentence?

It is Wednesday and my doctor’s office is closed.

This isn’t necessarily a BAD feeling. One usually must consume large amounts of alcohol or some other mind altering substance to feel this way. I am getting it FREE!

What about Azure? What if I drop her, or trip, or just fall over?

What if I crash my car on the way home tonight? I could pass a blood alcohol test but probably not a roadside sobriety test at this point.

I am so tired. I need to sleep. Someone wake me up when it is time to go home.

ZZZZzzzzzzzzzzzzzzzzzzzzzzzz

Visitors Messing Up My Day

2007-01-03T10:16:00.000-05:00

So the holidays came and went. (A great time was had by all, thank you!) I am now dealing with three visitors on which I had not planned.

The first is a former national leader who is being laid to rest in my home town today. Believe it or not I had to adjust Azure's childcare for the day as I have multiple family members taking part in the private funeral this afternoon. One of those family members is participating at the special request of the former national leader's family. I passed by the official former national leader's museum this morning on my way to work and took note of the armed gunmen on the roof. There are Secret Service and FBI agents all over town. Roads are closed and people keep hearing planes flying overhead ensuring a safe airspace. If I grew up in Washington D.C. I may be used to this sort of thing, but as they keep repeating on the local news here, this is the biggest logistical/historical event to happen in our city, like, ever. One note of interest is that my grandmother's picture is hanging in the official former national leader's museum as she taught ballet with this particular national leader's wife way back in the day. (I have small indirect claims to fame.)

The second visitor is AF who decided that after all of our time apart she just couldn't wait an entire month to see me again. After only two weeks she is back full force and I can't say that I am overly happy to see her again so soon. Hopefully this is a fluke and I will not be on the two week plan in the long term. If that is the case we will be ditching the progesterone only bcps and going back to non-functioning ute land.

The third and most unwelcome of the three visitors is a cold/flu/virus combo sort of thing. It started out as a bit of a sore throat with some sinus pressure, then it worked itself up to full body aches with chills and a low fever and today it has rounded itself out to a scratchy sore throat and a "productive cough" which brings up some bad tasting shit. I am taking Azure in for her Synagis shot this afternoon and will keep my fingers crossed as I knock on wood that she has not been sick since leaving the hospital and hope that she remains healthy despite my own personal path towards a sloven lump on the floor. My voice is gone so I can only croak like a frog or bark like a seal. I hope I do not end up answering the phone at work today.

I think it is possible that visitors two and three are actually my body's way of tapping me on the shoulder and saying, "Excuse me Blue, you are a woman who is working full-time and raising an infant who requires a bit of extra attention. You are worn out. Slow the Fuck Down!" The big question of 2007 will be whether I listen to my body or beat it into submission. Care to place any bets?

We Made Some Serious Lemonaid

2006-12-26T14:16:00.000-05:00

Christmas Eve we always get together with my father's side of the family for dinner, singing and presents. Everyone was excited to see Azure for her First Christmas of course. We arrived with zero ornaments which proclaimed "Baby's First Christmas" and left with four or five of them. She made out like a bandit! The most memorable time that night however was when she met my Cousin M for the first time. He has been away at grad school and this was the first family function that both he and she have attended together since she came home from the hospital. My aunt who saw her for a split second in the hospital when she was about 3 weeks old leaned over to M and said, "Now remember, the first time I saw her, her head was the size of a lemon!"
It shocked me. I look at my daughter who is now over 13 pounds and I have trouble reconciling the idea that she is the same teeny tiny baby that was in the hospital for a quarter of this year. How is that possible? She is so big and healthy and happy. How can this be the same kid who was hanging onto life by the thinnest threads of hope? This girl, who was giving out belly laughs as I alternated tickling her toes and her belly yesterday was at one point muted by tubes and too sensitive to be touched.
My Cousin A made a digital photo montage using pictures of Azure set to music for a school project. At the end it said "Elephant Family Miracle". She said it made her teacher cry and she received an A.
I think I have reached a point where I do not like looking back at where we were. We are moving on, focusing on her new developments and skills, like blowing spit bubbles with a mouth full of carrots! Life handed us a pretty big lemon at the beginning of the year, it was sour too, but we squeezed the shit out of it and I think that Azure is now the sweetest lemonaid ever to have touched my puckered lips.

Be Careful What You Wish For...

2006-12-19T10:34:00.000-05:00

I asked for it. I did. Remind me why again, exactly. Oh right, because I felt like crap and had nothing to show for it. Now, I have plenty to show, a bit too much perhaps.

I took the progesterone last week. Today is CD3. It is also day three on the progesterone-only "mini-pill". So far the cramps have been only teasers, nothing much to speak of, not even requiring painkillers. The bleeding and clots however have gotten a bit out of hand. You know the feeling when you are snuggled into your covers and the morning alarm has not yet gone off and you turn over only to be horrified by the feeling that should you pull back that downy flannel comforter you would find something only fit for CSI: Ute Division or possibly Nightmare on Menstrual Street? Well, yeah. That has been my start to the day the past TWO mornings. I am running to the ladies room hourly to keep things under control. Happy Holidays!

Of course I have been slightly distracted by the new pimples that are erupting around my nose every hour or so. Rudolph ain’t got nothin’ on me yo! We are not talking tiny whiteheads but the big red puffy painful suckers.

The worst part is the appetite. I have been participating in a weight loss competition at work. So far, I have done very well. Until yesterday when I ate not one, not two, not even three but FOUR pieces of pizza for lunch. All together now, H-O-R-M-O-N-A-L. This morning I had a Cinnamon Crunch bagel with hazelnut cream cheese for breakfast. Mmmmmm. We have a weigh in tomorrow. I may just be voted off the Red Team this week. *sigh*

All kidding aside, I think this is good for me. All the blood, all the huge, enormous, voluminous amounts of blood have been bright red. Not a single brown spot in sight. If I can do this every month (hopefully on a slightly lesser scale), I might actually function like a normal human! Wow!

T has been great. He even went out and bought my favorite citrus flavored vodka. I enjoyed a couple glasses on the rocks last night while holding up the Christmas tree so he could secure it into the stand. It actually looks pretty straight considering. We shall attempt to decorate it tonight. I cannot wait to see Azure’s face when she sees those lights start blinking!

I still have a ton of shopping to do and must prepare the house for the first of three family parties which we are hosting Saturday afternoon. (That is, we are hosting the first party on Saturday the next two are at other people’s houses Sunday night and Monday night.) There are also family birthdays to be celebrated and my girlfriend’s 10-year wedding anniversary coming up. (How can she have been married for ten years when we have just gotten out of college? Yes we have! It has only been, um, *gulp*, nine years, but it feels like only yesterday! No really, I am not getting old, I swear!)

I think I need some more vodka.

The One That Got Away

2006-12-14T10:56:00.000-05:00

A long time ago I wrote about how T and I were sponsoring a child in an orphanage in the Ukraine. I originally signed us up to do it back before we even started TTC on our own. I wanted to get our names in at the adoption agency through which my niece was adopted from China and a nephew (different sibling) was adopted from Guatemala. I figured if they were used to our involvement through their international programs when it came time for us to adopt we would be a shoe in. Not to mention that we obviously have an adoption friendly family. (I have since decided that should we adopt we would go through a different agency, but we kept up the sponsorship through the original agency.)

We received the first update on our boy O on his fourth birthday back in 2001. He was SO cute with white blond hair and big blue eyes and a great smile. His mother was a drug abuser and unable to take care of him but she visited him in the orphanage. He was diagnosed with "moronity" and showed several delays. I keep the most recent update with picture up on our fridge so that we, and everyone else, can see it. Through the years we have received updates and new pictures and have watched O grow and learn. His delays are becoming less and less of a problem as he is participating in play therapy and working with teachers. He was progressing very well. Last Christmas we received a card from him and a picture of the new playground at the orphanage. It was beautiful, it too went up on the fridge.

In the back of my mind, I kept thinking that someday, eventually, we might be able to adopt him. Every update ended with the same line. They were working on beginning the process to deny his mother’s parental rights, which would allow him to be placed for adoption. Every single update for the last five years has said the same thing. They were working on beginning the process.

This fall I was excited to see the large envelope from the adoption agency, knowing it would be another update on O. Instead, I found a letter explaining that O had reached an appropriate age to be transferred to a boarding school and was no longer under the supervision of the adoption agency. We would no longer be able to get information about him. While this was good news for him, he had advanced enough to go to school, I felt like he had been taken from us. Our boy was gone and we could not do anything about it. So sorry, here is a new boy for you to sponsor. While the new boy, V is adorable and certainly deserving. (He lives with his father and grandparents, not in an institution.) He is not O. We have lost him forever.

Wherever O is, whatever he may be doing, whoever is loving him now, I wish him the best.

Hold On, Let's Back Up a Minute

2006-12-08T09:42:00.001-05:00

I touched on a couple things in my last post but didn't develop them properly. I wrote it in a rush and posted it without doing a thorough proof reading. Let me see if I can elaborate a bit.

#1) My neck/shoulder/wrist. It is easy enough to look at my job, sitting in a chair typing all day, lots of numbers so the right hand gets used more than the left, and say that my posture and repeated use can cause this type of muscle fatigue and aches. I have been doing the same thing for the past nine years. I have a very difficult time believing that all of a sudden last Friday things started to hurt this way. I have always had tight muscles in my neck and shoulders. I stretch them when I feel them tightening up and before Azure was born I was getting regular massages to help relax them a bit. I no longer have the time or money to get those massages, and my massage therapist just had a baby of her own a couple weeks ago. (She has also endo and has been a great support and friend for the past few years.) T thinks that I hurt myself lifting Azure's car seat out of the base. I suppose this is possible, but it is not like I felt a twinge at the time of injury or anything. I may be sleeping on it funny, but why all of a sudden? Maybe it is Azure getting heavier but wouldn't my muscles gain in strength as she gains weight? It is not like she was 5 pounds yesterday and 12 pounds today, that happened slowly over the past six months. For now I am using stretches, a heated neck wrap and the occasional pain reliever to try to ease it a bit.

#2) The Rx of progesterone to jump-start my period should only be taken if I am certain I am not pregnant. I had to take not one but two tests to prove my low hcg in order to get the Rx in the first place. My thought was that I would take it ASAP but then my life went and got in the way again. Normally, T and I take a bit of a vacation Thanksgiving weekend. We go up north and enjoy ourselves gambling, bowling, playing pool, eating food we brought from home to keep the cost down and romping in the hotel swimming pool. Of course there is always the added bonus of Vacation Sex. Who doesn't like Vacation Sex, right? Well, this year we stayed home. To be honest, we didn't have the money at the time and bringing Azure with us this year would mean no gambling, and probably no bowling or pool playing. Our trade off is spending the night in the hotel this Saturday for T's company Christmas party. We get the pool, a good time with good food and, hopefully, the Vacation Sex. If I had taken the progesterone when I got it on Monday I would bet cold hard cash that AF would be in full force just in time to ruin this weekend for us (what with the bleeding and cramping and snarking). I couldn't do that to T. I decided to put my marriage ahead of my uterus for a few days. But, it isn't just a few days, is it? If we enjoy ourselves this weekend I have to wait another two weeks (during which we will need to either abstain or use a reliable form of birth control), test again and then take the progesterone. Don't get me wrong. The irony of needing to take a medication so that I have a cycle at all but not being able to take the medication until I prove my body is still defective is just laughable. HA! And yet, here we are. I suppose a few more weeks doesn't matter. Maybe I'll take the progesterone on Christmas, just in time to fuck up New Years! HoHoHo.

Ok, I think I did a better job of explaining myself this time.

One more thing to add. T and I have basically agreed that we would like to adopt another child preferably within the next 4-5 years. What is standing in our way is money. We don't have any. So, our plan of action at this point is to straighten out our financial fiasco and then we will investigate our options from that fresh point of view. I can deal with this. This gives me something to work on, even if it isn't directly related to bringing another child into our family it is a step in that direction. I can feel good about paying bills and pinching pennies because in the end Azure will have a sibling. *sigh of relief*

Ramdom Stuff

2006-12-07T17:14:00.000-05:00

I find myself in that weird position of a previously infertile person wanting to send out Christmas cards which include a current (and extremely adorable) picture of my daughter. I know this can be an extremely emotional time of year and having one’s face rubbed into other people’s success makes it that much harder. I know of one couple in particular who will receive a different card from us, sans picture. Now that I write it out this way I guess there is no real question involved. It is just something I have been thinking about a lot today. I guess I still do not feel completely comfortable with the idea, and yet, last night I took the pictures and today I designed the cards. All I have to do is print them, address them and send them out. That all may or may not happen in the next three weeks. With all of my "freetime" lately, we’ll see how it goes. They may end up as Happy Valentine’s Day cards.

My neck, right shoulder and right wrist have been quite painful this week. The wrist I can pass off as typing too much at work. While this makes most people nod their heads in acceptance, I do not believe it myself. The shoulder hurts while I am sitting at my desk, driving my car and holding my increasingly heavy little girl. How is it that my arms were empty for so long and now I am in pain holding that which I coveted? Just doesn’t seem right.

Another strange thing. So I have the Rx for the progesterone to start my period so that I can start the bcps. However, this Saturday is T’s company Christmas party. They always have a dinner at a hotel with a bar and encourage people to wine, dine, do a couple rounds of taquila shots, a little more wine, etc. and then spend the night in the hotel. It is a really fun time if you do it right. We are taking Azure and spending the night. Don’t get all up in my grill just yet. There is more to the story. We have hired a dog sitter to take care of Maggie whilst we are away. The nanny and her sister will be watching Azure for us in our room while we take part in the festivities. The sister has wanted to meet Azure and this is her chance. It also takes a bit of the creepy out of the married couple inviting the nanny to join them at a hotel room in town. *wink, wink* We plan to take Azure’s bassinet, a few select toys and a blanket large enough for her to lay/play on without having to come into contact with the hotel bedspread. Blehck! Once the party is over we will go back to our room and send the nanny and her sister home. Everyone wins! If you can see any flaws in this plan, please tell me. I am one of those go with the flow parents but if you see any HUGE RED FLAGS that I am missing I would love to hear about them.

Sunday we will be celebrating the second birthday of a girl who would be my godchild if it weren’t for the whole me being an atheist thing. She is smiles and sunshine walking around with big eyes and curly hair. I am very much looking forward to the party. This will also be the first time that some friends will see Azure in person and I am looking forward to that too.

One last item. Azure turned 6 months adjusted yesterday and so we celebrated by giving her oatmeal for the very first time. *GASP!* Not rice cereal? She will never eat again and develop speech delays! Well, bite me, she’ll be fine. If you are really that worried about it would you feel better if I told you that it was organic oatmeal? What if I said she had a ball playing with the spoon but turned her head away from the actual "eating". We ended up putting the remainder of her bowl in a bottle and she drank it that way. If at first you don’t succeed…

Cervix Insufficiency

2006-12-04T14:40:00.001-05:00

It has been measured and has been found wanting.

The nurse I spoke to today declared that in the 13th week of any future pregnancy my doctor would want to do a cervical cerclage. Fun stuff.

I now find myself wanting to cross my legs just in case something falls out!

I did prove I am not currently pregnant and obtained the Rx for the progesterone to start a period. I also have an Rx for progesterone only bcps. I hardly think it is worth it now. I might as well just get the copper IUD and call it quits. I do not see us TTC #2. An adoption will have to wait until we get some bills paid, the house refinanced and make arrangements for me to quit my job to stay home with both kids. In other words, it will be a while.

So Many Topics, So Little Time

2006-12-01T11:12:00.000-05:00

#1 - A while ago I wrote about the huge scar on Azure’s left upper arm and how her plastic surgeon, Dr. RightNow, wanted to schedule her for surgery sooner-rather-than-later to fix it. Well, his time estimate of 4-5 months turned into a surgery scheduled for this week. I postponed this until after the first of the year. My goodness, we needed to get the all clear from her Ped, the cardiologist and get a second opinion. SLOW DOWN! We now have two out of the three and I need to call tomorrow to make the appointment with the cardiologist. The second opinion was wonderful! I loved this guy! He was much more conservative and told us that we could do absolutely nothing and Azure would grow up to be a completely healthy and normal child, though, literally scarred for life. He said there was absolutely no reason to rush into things and that we should most definitely make sure her other health issues are resolved before worrying about this. He also stated that if she were his daughter he would have the surgery done, preferably before she is so mobile that she could rip out stitches on her own, etc. We are thinking next summer maybe. Now I just have to cancel the surgery with Dr. RightNow and convince the insurance company that we want the other surgeon to do it a few months down the road. How hard can that be? …um, hello?

#2 - I am still living sans period. I have been waiting for this type of life-style since the fifth grade! However, now that I have it, I do not want it, at least not this way. I feel pain and pressure in my abdomen like PMS but never get anything out of it. At least if I had a period something would eventually relieve that pressure. History tells me that once I do get a period all Hell will break loose. So, I am considering the mini-pill. A progesterone only bcp. I used to take Provera (oral progesterone sup.) in order to stay on a regular cycle. One pill every day CD16-26. If I did not take the pills, I did not get a period. My body does not like that; it is better to be cyclical. I tried the take the bcp all the time so I did not have a period and my body revolted with seven straight weeks of breakthrough bleeding. Fun times. So, we are looking into our options. We still have to figure out what to do about #2. I am all in favor of adoption, but as we all know, it is not just up to me. I think we are a few months away from making any decisions and I cannot lose complete control of my body in the meantime. I called my GYN today to see if I could get an Rx for a megadose of Provera to kickstart a period and then start the mini-pill. I had some bloodwork done a couple weeks ago, which included a pregnancy test (negative). Unfortunately since it was two weeks ago they are now requiring that I stop into the office again to prove to them I have not fallen pregnant in that time and THEN they will give me the scripts. *eyes rolling*

#3 - New Years is coming up in about a month. We have traditionally spent New Years Eve with some college friends who have a bunch of people over to fondue, drink, watch the ball drop and spend the night followed by breakfast the next morning. It is a great time and we all have a blast. This year we have some things to consider. I am sure you are thinking child-care would be tops on that list. Not so much. I am sure my parents would watch her overnight without any question. My main concern is that I know they have been trying to conceive since well before last New Year’s. "Our room" at their place is actually a futon in their home office. I happened to spy a copy of "Fertility for Dummies" on the bookcase last year but they claimed they were not trying but not preventing. It does not take an infertile genius to put two and two together does it? Now, last year I was pregnant and not drinking but was not showing much yet and so we did not make a big deal out of things. They knew about our fertility treatments and I think they genuinely wished us well. We saw this couple over the summer and they inquired about Azure and how she was doing. I have always answered their questions and then tried to change the subject so as not to dwell on the fact that we have a child and they do not. I am concerned things might be more difficult at the party this year. We have gotten to know the other regular guests but the only time we see them is once a year, at this party. I am sure they will ask about Azure. I do not want to make our hosts uncomfortable. Maybe they will conveniently forget to invite us this year but I would really miss it a lot. Any suggestions?

#4 - Has anyone switched over to the "new" Blogger Beta version? If so, do you like it? I am afraid to switch and then not be able to switch back. I would like to know what you think of it after using it. Is it worth the switch?

#5 - Holy Cow with the snow! My entire city is covered in a sheet of ice which is now being covered with snow at a high rate of speed. I'm dreaming of a white Christmas indeed!

Back to Work

2006-11-27T11:50:00.000-05:00

We had a quiet and lovely Thanksgiving. It turned out to be just us at our house. T's mother was supposed to join us but came down with a sinus infection and didn't want to get Azure sick. Have I mentioned how considerate people are about that? I have had more people offer to reschedule things when they or their children are/have been sick. I am amazed at the thought others put into our meetings and it just makes me so happy that they are thinking of her that way. (Thanks Beth!!!)

Saturday we enjoyed a nice anniversary but waited until last night to toast our 6 years of marriage with champagne. Things turned sour after that.

Let's just say that between T, Azure and Maggie-The-Dog, I am the only one who has not puked in my house in the past three days. Maggie gets sick when she doesn't eat and gets too much bile built up in her stomach. Azure is still dealing with reflux and, well, she is a baby. They spit up! T on the other hand has been praying to the Porcelain God every hour or so since last evening. We are not sure whether it is food poisoning or a virus of some sort. I am leaning towards a virus since our receptionist at work said she had the same thing on Thursday.

I am washing my hands constantly!

I had some simple bloodwork done with my annual visit to the GYN. My Alkaline Phosphotase came back high. I have to be tested again. If you just said, "What the Hell is that?" then you know my exact response when I got the call. It is a liver function screen they do. There is no way to study for this test and no way to make it go down. I just have to repeat it and see if it is still high. I am currently off all drugs except for my Thyroid supplement and haven't even been drinking alcohol since I have been trying to lose weight. I am not sure what could be stressing my liver out but it seems like an odd time for it. I guess we'll see what the repeat test shows.

Hoping to keep my head out of the toilet in the next few days and I might actually get a chance to post again. Wish me luck!

Today

2006-11-14T12:42:00.000-05:00

I had a visit with the OB/GYN yesterday. T and I spent last evening discussing the pros and cons of attempting another pregnancy. I believe we decided we would like to have a consultation with the maternal fetal specialists at the local bigwig hospital and see what they have to say. We learned there was an infection in the placenta when Azure was born (why did I not know about this before?) and upon examination, my cervix felt short. I have an appointment with the dildocam on Sunday morning to have it measured. I didn't know one could measure the non-pregnant cervix and declare it either competent or not, but I guess that is the purpose of this fun little exercise so we shall see what the radiologist has to say in the matter. I don't know whether the knowledge of the infection will help us since my doctor said there was no way to tell if the infection started the labor or the other way round. Once upon a time there was a chicken and also an egg.
We want another baby. We would prefer sooner rather than later. We do not want another preemie. Another premature birth would effect not only ourselves, which is bad enough, but also Azure, our poor Maggie-dog who has been so starved for attention, the people we would have to rely on to watch Azure if I were placed on bedrest, hospitalized or if the baby did require a stay in the NICU. We cannot just think of ourselves, there are far too many others to take into consideration. We did not ask for a premature birth the first time round. If we chance another pregnancy we would be deliberately gambling on just such an outcome. Keep your fingers crossed all you want that it lasts longer next time around, but those crossed fingers will only get you so far.
All of this is on my mind today, Prematurity Awareness Day.

Annie, Annie, Are you Ok?*

2006-11-09T11:40:00.000-05:00

Maggie requested I post the steps for reviving a baby who has stopped breathing. She is concerned about her one month old and SIDS. First of all, Congratulations Maggie! Secondly, I am not comfortable at all with attempting to teach these methods on this blog. The responsibility and liability involved is just too great a weight for my weary shoulders. That being said, I didn’t want to ignore the issue entirely. I thought that I could write about what we did for Azure and suggest a couple options for learning more.

Before Azure was released from the hospital we were required to watch a video on infant and child CPR and then demonstrate the techniques on a doll. We are not technically certified but we know enough to get us by in an emergency.

What we did when the alarm went off:
Check her color. Is she pale, blueish around the lips? This is an indicator that she needs oxygen. We would call her name and place a hand on her chest and gently but firmly wiggle her side to side as if to wake her from sleep. (I hesitate to use the work "shake" because of the implications of Shaken Baby Syndrome. I can very easily see someone panic and over-do-it in an attempt to stimulate a non-responsive baby. The irony in the possible tragedy is chilling.) We sometimes would turn her on her side and vigorously rub her back. Most of the time, this was enough to wake her and nothing else needed to be done. We would then spend a few moments calming down our own racing hearts. We usually gave her extra hugs and kisses at this point and told her that we don’t require much from her but the breathing and heartbeat thing were not optional.

If the jiggling was not enough to bring her around, we would try lifting and wiggling her arms by the hands. One nurse showed us how to pinch her big toe. Pinch it enough so that it hurts. Pinch the toe while lifting the foot into the air and then drop it letting the leg fall back onto the bed. It sounds mean, but the pain in her toe should be enough to make her upset and draw her attention to that, which will probably make her mad and possibly cry. When you are trying to save the baby’s life, a little pinch on the toe seems like a necessary evil. I thought that I could never do that to my child, but when I was there alone with her and she needed stimulating, I was pinching that toe and instructing her to get mad at me, cry, yell at me!

You do whatever you have to do to get a response while keeping in mind you do not want to injure her in the process. It is this cool under extreme pressure thinking that scared T out of watching her on his own. He saw that I could handle these situations and do what needed to be done without panic. He did not trust himself to be calm enough to remember what to do.

I would recommend:
#1 Go to an infant and child CPR training class put on by the Red Cross. This will ensure you are given the correct information and instructors can watch you practice the techniques and give you hints or corrections on ways you can improve. This should give you some peace of mind, knowing you did everything you could to educate yourself on these lifesaving steps.

#2 Get a training video and watch it a few times to get familiar with the steps to take. Practice on a doll or teddybear. Watch the video again every couple of months to refresh your memory. We were told this was the best way to keep our up our skills.

#3 You can find a quick and easy to follow guide online here. This is no substitute for a class, but it is better to have some information rather than none. The class is still the best way to go.

Finally, I would like to make the distinction between Azure’s case and SIDS. Azure, being a preemie was in a period of frequent Apnea and Bradycardia and occasional irregular breathing. This is a stage that many preemies go through and eventually outgrow. It is a matter of brain development. They need to "learn" to continue the involuntary actions of breathing and keeping their hearts going. Once the brain "gets it" they do it automatically just like anyone else. I also believe that reflux played at least a partial role in the incident in June when she turned blue. There was milk oozing slowly out of her mouth when I turned her on her side rather than the quick stream of spit up one would expect. I am not an expert on SIDS. I follow the "rules" of back-to-sleep and keep her sleeping area clear of blankets and stuffed toys. She goes to sleep with a pacifier but not a bottle. She is still getting mostly breastmilk from the freezer and we do not smoke (nor does the nanny or my parents who watch her while we are at work). She sleeps in a bedside bassinet right next to me rather than in our bed. (Does that count as co-sleeping? People ask about co-sleeping and I feel very wishy-washy with my answer.) You can find more information on SIDS here and here.

Maggie, I wish you luck and thank you for bringing up this important discussion.

*If you have ever taken a CPR class from the Red Cross you will recognize this as the first step in adult medical intervention with the practice doll named Annie.

Hi-Diddle-Dee-Dee

2006-11-09T07:10:00.000-05:00

I've got no strings
To hold me down
To make me fret,
or make me frown
I had strings
But now I'm free
There are no strings on me

Hi-ho the me-ri-o
That's the only way to go
I want the world to know
Nothing ever worries me

Hi-ho the me-ri-o
I'm as happy as can be
I want the world to know
Nothing ever worries me

I've got no strings
So I have fun
I'm not tied up to anyone
They've got strings
But you can see
There are no strings on me

The monitor is officially FINALLY a thing of the past. The last two reports showed that she has gone two full months with "no patient events". This means that even though the alarms sounded off, she was actually fine, they were false alarms.

The irony of the monitor: It was there to keep her safe, to alert us when/if things went wrong with her heart or her breathing. All the experts will tell you that a baby’s crib should be free from loose blankets, stuffed animals and anything with a cord or ribbon longer than six inches to prevent strangulation or suffocation. Then they go and attach a ten-foot cord to her 24/7.

The bad part of the monitor: It is a ball and chain in the most obvious sense. You must drag it everywhere. It comes in a handy little shoulder bag but that is just one more thing. When it is plugged into the wall, you are stuck. When you are pacing with a crying baby you must be careful not to turn in circles or you will tie up your own feet. You must hold onto the cord so that the weight of the cord itself is not pulling on the leads which must be taped to the baby’s skin since the adhesive does not stick on its own. The skin will develop sores from being covered in tape all the time. No chance to breathe since the only time it is not covered by tape and leads is when the child is actually in the bathtub. You cannot lotion the skin or apply healing ointments because then the leads and tape will not stick next time. You will accidentally unplug the leads or let the battery run out setting off the alarm and scaring both the child and you. The monitor alarm sounds just like other noises in your daily life, which will scare the crap out of you. The smoke detector, a truck backing up, the microwave going off, that ringing in the pipes when you are in the shower and noises on TV will all make you jump in panic. You will suck in your breath and look for the baby each and every time you hear such a noise, even when the baby is not there.

The good part about the monitor: When the baby’s heart rate decelerates and she stops breathing and turns blue the alarm will go off to alert you that the baby needs help. Without that alarm you would not know until it was too late to intervene and you could lose her. That one instance in June has made these past five months of lugging that thing around worth it. The false alarms have done more psychological damage to T and me than anything else could have, but it was there when we really needed it.

What do we do now? We check her every few minutes and feel her chest rise and fall and listen to her sigh in her sleep and must reassure ourselves that she is Ok. She is free from her strings and she is a real live normal kid, just like Pinocchio.

Hey You!

2006-11-07T10:49:00.000-05:00

STOP READING THIS BLOG AND GO VOTE!

THE BLOGS WILL ALL BE HERE TOMORROW, YOUR CIVIL RIGHTS MAY NOT BE!

Thank you,

Blue :0)

Warning

2006-11-05T00:23:00.001-05:00

When you actually take an afternoon to yourself and go visit your friend who lives about an hour away, do not drink even a small cup of coffee to keep yourself awake for the drive home since you will find yourself sitting at the computer at midnight typing lame blog entries such as this while listening to your husband and daughter slumbering upstairs on the baby monitor.

Things are crazy busy 'round here!

2006-11-02T12:47:00.000-05:00

I KNOW I haven't posted in a while. I am working on a good one but it just isn't ready yet.

For now:

My right eye is bloodshot. It has been this way for two days now. I think I have a "cold" in it. It has happened before. I dumped about a gallon of eye drops into it yesterday before I remembered the last time this happened and the doctor said that the eye drops were bad because they constricted the blood vessels more and so defeated the purpose. So, I am walking around looking all funky in the one eye. I might wink at you once in a while just so as not to freak you out.

My office has started our own version of The Biggest Loser. Do you watch that show? I am addicted. T and I watch it religiously. Anyway, yesterday was the big weigh in at work. We have two teams of four people each. Each person kicked in $20, the winner gets the pot. We will weigh in twice a month from now until February 7 (yes, the competition runs over the holidays!). The losing team each weigh in has to vote off one member of the team to be replaced by a member of the winning team. I need to do this. I am the same weight now as I was six months pregnant. I have gained 20 pounds since returning to work! Not good. I am really watching what I eat and have started walking around the park on my lunch hour. I need to get back to the gym. I haven't been since February. I want to go, it is just a matter of childcare. They have a nursery at the gym but I don't want to pick her up after working all day and drop her off there for a couple hours while I work out and then go home and put her to bed. That just sucks the big one. T thinks we could alternate days, one watch her while the other goes to the gym but then we have a car/carseat issue to deal with. It will all work out in the end. (Get it? Workout? Ha!)

I am waiting for a call back from the pediatrician about getting a second opinion on Azure's scar surgery. It shouldn't be a problem. Oh, and she had her first Synagis shot yesterday. Poor thing looked completely offended by the poke. She looked shocked and then sad in a way I cannot even describe, like she was thinking, "Why would you do that to me?" To keep you safe and healthy Sweetie.

Azure had a wonderful Halloween with one slight exception. She was a pumpkin! I had decided that I wasn't going to spend money to buy her a costume this year but my mom's friend gave us the costume with some other beautiful clothes as a baby gift and she was just so incredibly cute in it I can hardly stand it. The exception came about 12:30am when the child who has been sleeping through the night for a few months suddenly awoke crying which lead to screaming and her usual comforts did not comfort this time. We walked and bounced and shushed and offered the pacifier and she was just not having it. It occured to me as I was bouncing and rocking and swinging my poor destraught child that it was officially Halloween. It is said that the veil between the living and the dead is thinnest on Halloween. I wondered if she was being visited by some unhappy spirits. It actually came into my tired mind that maybe she was being visited by the spirits of the babies in the NICU that did not go home. How is that for creepy? I was finally able to settle her again. I do know that she dreams and it could have just been a bad dream that scared her, then again...

Pandora Says What?

2006-10-23T11:56:00.000-05:00

“Think Outside the Box” is a fairly well known concept in business these days. The original intent was to challenge people to break free from the tired and structured way of doing things and come up with fresh new ideas. Around my office it is not unusual to hear the boss ask someone, “What were you thinking?” to which the reply is “I was thinking outside the box, sir.” Then we all yell, “Get Back In The Box!” We do like our structure around here, but we have fun with it too.

Thursday my mother and I took Azure in for a check up on her hemangiomas. She has a large one on her leg, which we have watched and bandaged when it ulcerated but are completely unconcerned about. She has another one on her lip. This is resulted in a referral to the plastic surgeon. If it got so big as to interfere with her ability to eat, we would need to intervene in some way (steroids, laser treatments, etc.). It never actually got that big and is now much smaller and lighter in color. He wants to see her back in a year just to double check. No big deal.

Then, things went wrong. I said, “As long as we are here, can I get your opinion on a scar she has?” He consented. I removed the clothing covering her upper arm and the large starburst scar thereon. The scar is left over from a sore she developed her first week in the NICU. They had an electrode cuff on both of her upper arms. Because her skin was so sensitive, she developed this sore. They moved the lead to a different place and we treated the sore with antibiotic ointment several times a day, but before the sore was completely healed, it was once again covered by an electrode. It never did heal properly and left a sizeable scar. I expected him to say something to the effect of: it was a large scar but as she gets bigger it will get smaller and she will probably end up with a bit of puckered skin there or maybe a slight discoloration but in the end, no big deal. I imagined her coming to me as a teenager complaining about this mark on her arm and me sitting her down and explaining that scar was a badge of honor. She fought for her own life and she won! That scar is the reason behind the placement of my latest tattoo, the one of her tiny foot directly off the birth certificate. I had it put on my arm in the exact place she has that scar. (It comes across as a little redneck until people hear why I put it there.) That scar is a part of who she is and what she has been through!

The doctor however, did not say what I expected him to say. He said that the scar would grow as she grows and spread out and that the tissue had separated from the fat below and would never correct itself. He said he could feel right down to the bone and tendons and that this was dangerous. He said the older she gets the tighter the skin will get and she will end up with this giant indentation in her arm. He said that she needs reconstructive surgery to repair it, sooner rather than later.

Surgery!

Now, his idea of “sooner” is in about 5 months. That is how long it will take us to get approval from the insurance company (very likely as it is a result of the NICU) and get her placed on his surgical schedule (he is booked that far out). Her age does not really bother me since by the time we get this done she will be a year old (1yr actual/8 months adjusted). What bothers me is that we thought she was going to have to have heart surgery and it scared the Hell out of us. It is a life-threatening situation when you need heart surgery. They don’t just do it for kicks. Her arm is not life threatening. I never would have requested the scar be fixed for cosmetic reasons. If that were the case I would let her make up her own mind when she got old enough to understand what she would need to go through in order to fix it. What he is saying is that it is medically necessary. Not cosmetic, but important to her health to protect those bones and tendons that are exposed at this point.

I am left feeling torn. If she really does need it, of course I have no problem with her having the surgery. However, this particular doctor is a plastic surgeon. It is his business to fix things that do not look right on people. I want to sit him down and tell him that we went through infertility and that she was an IUI baby and then she was born 3-1/2 months early and we went through the Hell of the NICU and now she is home and relatively healthy and this mark on her arm is pretty much the least of our concerns. I want him to completely understand our perspective. Is it really medically necessary or are those buzzwords to get insurance to pay for cosmetic improvements?

At the same time I am horrified at my own obliviousness. What if I hadn’t asked about the scar? What if I had let it go only to find out in a year or two that her arm was growing abnormally due to the tightening of that tissue or an injury to one of those tendons? I thought it was just a scar!!!!! I thought if anything I might have to rub one of those new scar treatment ointments on it or something. Surgery!

So, I asked what I thought was an innocent question, let Pandora out of the box, and now I am SCREAMING in my own head, Get Back In The Box!

We Have Fun At Home

2006-10-17T15:46:00.000-05:00

Scene: Blue and Azure watch a Harley Davidson commercial in which Guns-n-Roses’ “Paradise City” plays while all the black sheep separate themselves from the white sheep and congregate together because they know they don’t “fit in” anywhere else but they will accept each other.
Blue: This is Guns-n-Roses!
Azure: (Wide eyed stare at the TV, drool cascading down face.)
Blue: If you become the black sheep of THIS family, you’ve got issues!
T: (Laughs hysterically from the next room.)

Scene: T lifts Azure up in the air and she drools into his goatee.
T: Blehck! Ugh! Ewww! You can go back to Mommy now!
Blue: So you will kiss the dog who licks her own ass but a little baby drool is gross for you?
T: Yup.
Blue to Azure: Did you hear that sweetie? If you can learn to lick your own ass Daddy will kiss you.

Scene: Family sitting on couch together after dinner.
Blue: OHMYGOD! Azure has a big bleeding gash on her head!
T: (blinks and stares not saying anything)
Blue: Oh, wait, it is just cherry ice cream.
Blue: Is it wrong if I lick ice cream off the baby’s head?

I'm Dreaming of a whiiiiite Halloween!

2006-10-12T12:35:00.000-05:00

Maybe it is the fact that it is only mid-October. Maybe it is the fact that I am still nursing the second degree sunburn on my face from last weekend. (Ouch!) Maybe it is the fact that I spent all summer shut up in the house making it feel as if I skipped the season all together.
Whatever the reason, this just feels so fucking wrong!

October Snow

Note to Self

2006-10-09T09:49:00.000-05:00

The baby will become frightened and cry with real tears when you suddenly stand up and yell "No! You Stupid Idiot! You Idiot!" at the television during a last lap crash which took Dale Jr. out of the lead. Luckily, when scooped up into your arms and hugged and shushed she will settle right down again. Someday she will be big enough to yell at the TV too.

Not Just For Candles Anymore

2006-10-06T16:31:00.000-05:00

Wax. That of the ear variety. It is sticky, gross and difficult to dislodge. I suffered from it as a child. Actually, I did not suffer from the wax itself, but rather from the wax removal process. They basically used a pressure washer to shoot water into my ear canal at something like 10,000psi. How I came out without brain damage I do not know. It was excrutiatingly painful. I will rate it as pain worse than child birth. It was that bad. So please believe I understand the topic at hand.

Azure has earwax. She also has the most miniscule ear canals ever. They are too small for the dental tool hook device that the ped uses to dig said wax out of the ears of unsuspecting little ones. So, we needed an alternative means of dewaxing.

A drop of mineral oil into each ear every night (or every other night) to loosen the wax and keep it soft. Flush softly with warm water using a bulb syringe. Keep ears clean with a Q-tip but do not shove the damn thing in too far or you might see it come out the other side and damage the ear drum while you are at it. Baby Oil is basically mineral oil that smells pretty so this is good to use. I use olive oil in my own ears and that works too.

I have found that Azure does not like the drops (they probably tickle) and has come to recognize the dropper. When she sees it coming she will fling herself in the opposite direction therefore hiding the ear I was aiming at. Oh the flailing! I keep telling her the pressure washer is worse but she won't believe me. I have to distract her with one hand and sneak up on her with the oil dropper with the other. It is fun quality time.

Good Luck!

Anyone else have dewaxing tips or stories to share?

Fun For All Ages!

2006-10-06T16:03:00.000-05:00

This week T invented a new drinking game for parents of small children. Read Fox in Socks, the Dr. Suess tongue twister as fast as you can, then take a drink (do a shot, swig a beer, you get the idea), then repeat! It is ever so much fun.

Yeah Baby, Yeah!

2006-10-03T13:09:00.001-05:00

“Off the charts” is commonly used as a means of saying something is especially big, exceptionally good or outstanding in whatever means of measure is in use. I however, am happy to announce that Azure is ON the charts! We had our visit with the home visiting nurse from the county today. She comes once a month to weigh and measure and document milestones reached or not. This is the beginning level of our early intervention services. So far all milestones have been reached. She is drooling like a mad woman (I am surprised she is not dehydrated from all the liquid flowing out from those rosebud lips) and eating like crazy and sleeping a lot. Growth Spurt!
Wanting to show the most progress possible I strategically dressed her in a horizontal striped onsie this morning. You know, horizontal stripes make you heavier, right? We checked to make sure the diaper was dry and placed her on the scale. She weighed in at 11 pounds and measured 23 inches long! My big girl! Now here is the best part. She is in the 25th percentile for a 4 month old (her adjusted age). This is the first time she has registered on a regular (non-preemie) growth chart! WhaHoo! Of course directly after the weigh-in, while we were in the question and answer part of the visit, Azure filled her diaper. Lovely. Thankfully my mother took her and changed her while I finished the interview. We probably should have weighed her again after to subtract the poo weight but whatever.

The nurse documented the following:
- Smiling
- “Laughing” which is actually more of a single happy shriek
- “Talking” coos and bubbly tonguey noises
- Grabbing things and putting them in her mouth
- Holding head up
- Alert and follows people around the room with her eyes
- Poops two days in a row every 5 days or so (Yep, today was one of those days)
- Drinking thawed breastmilk and one bottle of Neosure formula per day
- Surrounded by books and toys and is held more often than not
- Earwax being treated with oil

Oh, and the big news this week is, she rolled over on Saturday! Holy Cow! She was on her playmat on the floor and doing her usual spinning in circles routine when she pulled up her legs and rolled onto her side. I thought she was just going to stay there as she seemed to be perfectly content so I went to the closet to get the broom. When I turned around again she was on her belly! I scooped her up with lots of praise and smiles and saying “You did it!” and probably freaked her right the fuck out. I was so proud it brought tears to my eyes. I haven’t been that happy since she first tried to breastfed (sort of) in the hospital.

All of this makes me just feel like we have dodged one HUGE bullet.

ARE WE DOODLE-WORTHY?

2006-10-03T07:57:00.000-05:00

Hey all, I thought this was important. Google does fun little designs to dress up their home pages on important days and they call them doodles. The March of Dimes is petitioning them to doodle for prematurity on November 14 for Prematurity Awareness Day.
Please consider signing the petition. It will raise awareness of prematurity and hopefully also increase traffic to the March of Dimes website. One in Eight babies is born prematurely, that is too many. Help me to help them put a stop to this.
I signed the petition and now I am asking you to follow my lead.
ARE WE DOODLE-WORTHY?
Thank you!
Blue :0)

Positives and Negatives

2006-09-28T12:34:00.000-05:00

One year ago today I saw my first pair of lines. I never thought that I would see them and then I did.

I never thought that I would have an uncomplicated pregnancy and I didn't.

My life has changed so much in the last year.

We went through some really bad and have come out on the good side. Things are getting better as time goes by.

However, I am self-medicating with food. I am eating things I know I should not eat. I ask myself what it is that I am trying not to feel when I eat these things and I tell myself it is not polite to talk with one's mouth full and continue chewing. There are some things to work out in my head (and off of my expanding butt) but knowing this and accepting this is half the battle I think.

My daughter is incredible and everyone in my house smiles at least once a day which is a far cry better than a year ago while we were in the midst of treatments.

I am looking forward to New Year's Day 2007. I think I have had enough of 2006. I feel the need for a fresh start for my family and for myself.

**Edited to add**
Ok, I still stand by what I wrote earlier, but life can't be all bad when your boss brings you a beer to enjoy at your desk the last hour of the workday and you agree that the best new flavored vodka they should come out with should be chocolate chip cookie dough.

Jeff Foxworthy once said, "I like to shake my daughter up and then hand her to people I don't like!"

2006-09-27T14:58:00.000-05:00

I have almost gotten used to hearing that urpy burpy noise followed by the slow volcanic flow of warm spit up meandering down through my cleavage. (How is it that I can cover myself with a burp rag and she knows just the right angle to turn her head to completely bypass the cloth and shoot right down my shirt?) I can get over it easier than T who seems to think this is putting a damper on our love life. Afterall, who wants to get all cozy and amorous with recently vomitoused boobs? I can say however that I prefer the pear juice spit up to the mucus/milk spit up. It comes out easier for her and also cleans up easier. Last night was fun as I was holding her facing away from me, she burped followed by a stream that poured over my arm and then finishing with a lovely splat on the kitchen floor. Ya gotta love reflux. Poor thing.

This morning was the best. Having shed the unhappiness of Monday night (thank goodness) she was all smiles and coos with waving of arms and kicking of legs. She was positively giddy considering she had just woken up, was in the process of a diaper change and had not eaten yet. She looked up at me, smiled HUGE, clutched her hands together brought her knees up to her chest and let out a fart that would make a bean eating trucker blush. She was so happy with herself and I couldn't help but laugh out loud.

I have found however that my daughter is much like those old cans of juice, the kind that you punch a hole in the top to pour out of. You have to put a small vent hole in one side then a larger one opposite that for the actual pouring. You relieve the pressure on one end to ease the passing of liquid from the other. Azure is the same way! Whenever something happens on one end I can pretty much bet something will immediately happen on the other.

I Love Mondays

2006-09-26T11:22:00.001-05:00

- My cold is mostly gone. All that remains is the sinus/eustachian tube pressure. Snap.Crackle.Pop.

- Our receptionist was out yesterday so I had to do my job plus some of hers.

- Azure decided after the nanny left that it would be a good time to become inconsolable. This is a big blow to the ego considering I am the main consoler. She refused to sleep and wanted to eat CONSTANTLY. I think there was a bit of gas in there too. My knee is a bit numb and funky feeling today, probably from all the bouncing that took place last night.

- I decided that since she was pitching a fit anyway it would be a good time to give her a bath. This worked. She was quiet the entire time she was in the tub. The second I took her out to dry her off the fit was re-pitched. I immediately unpitched it again by distracting her with a small bottle. Not a complete feeding but enough to calm her down, momentarily.

- I strategically gave her the Reglan (required 15-20 minutes before a feeding) so that she would eat 15 minutes before we would eat dinner thinking that I could feed her, burp her and put her down in her crib and then T and I could enjoy the nice dinner he had prepared (LOVE THAT MAN!). This did not work. We each left our plates and ran into the nursery to calm her (without picking her up) every 5 minutes or so until I had finished eating. (NOTE: She likes to be entertained. She does NOT want to be alone.)

- Knowing that she was full and dry, I decided it was time for rocking. We settled down in the recliner and we rocked as I sang and then rocked some more as I pulled book after book onto my lap and began reading in a soft low soothing voice. We read Dr. Suess's Sleep Book (if you don’t have it you must go get it, no seriously, go now and get it), we read Sandra Boynton’s bedtime book, we read The Kissing Hand, which is just the most beautiful story ever, we read several stories from my collection of Little Golden Books which included French pigs and yawning sleepy bunnies. We read until my voice was no longer soothing but rather rough and crackly from lack of lubricating beverage.

- We read and read and read and rocked and rocked and rocked and she fell asleep. I finally decided it was time to get up and put her to bed in the bedside bassinet upstairs. I smoothly stood so as not to jostle her too much and promptly stepped on the cord to the heart/apnea monitor, in so doing I unplugged one of the leads. This, for those of you who do not/have not had a home monitor, SETS OFF THE ALARM to let you know the lead is not making contact. The alarm blared, T came running and she woke up. SHE.WOKE.UP.

- ANOTHER bottle later and some burping and shushing and cuddling and swaddling got us to all to bed at last. Four straight hours of attempting to make my daughter happy and failing.

- One would think I would have slept very well. Not so. Tossing and turning and dreaming. (Something about T throwing BBQ chicken into the snow covered front lawn of my parent’s old house and something else about spiders that were missing a few legs. Don’t ask me to interpret this one, it is beyond me.) I was not ready for the alarm to go off this morning.

- I spilled coffee on myself in the car while taking Azure over to my mother’s house. No way to hide it, no time to change.

- I went back to the office today to rest a bit.

"I'll think about it tomorrow."

2006-09-19T15:44:00.000-05:00

I do not think that I am over the trauma of Azure’s preterm birth. Not just the birth itself, that was traumatic of course, but I mean the big picture. I lost a whole trimester, the bonding with the baby in utero, the labor and birth experience (I don’t think my 20 minutes count) and the normal taking the baby home from the hospital (not on a monitor and not scheduling appointments with specialists every other week.). I lost the normal. I thought once we conceived I would get some normal, but I didn’t. That has been bothering me for the past couple of days.
The wife of a co-worker just had her gestational diabetes screen yesterday. She stopped into the office to pick him up so that he could go with her. I delivered the day before my GD screening was scheduled. I suspect I may have had it but I will never know for sure.
At the time of Azure’s birth, I went into Fight or Flight mode. I was all about handling the situation. What needs to happen next? What do we do? What do I do? What does she need? It was a time for problem solving, not for grieving. Besides, she lived. What was there to grieve, right?
Ah. There is the question. What is there to grieve? How can I even contemplate grief when I know my daughter is healthy, safe, feisty, and happy?
Let me tell you. There is grieving to be done, grieving for the loss of the pregnancy. The baby came out relatively unscathed, but the pregnancy was lost. I really enjoyed being pregnant. I was just getting to the point where I was settling into my body and the changes it was going through. I was just starting to feel her movement on a regular basis. I had gotten my energy back and I looked pregnant. I could wear maternity clothes, and I looked and felt normal in them.
The birth went so fast and was so completely surreal I did not have time to think about what was happening. I shut down; I was numb to the emotional aspects of it. T was amazed at how well I handled everything but the truth is, I didn’t handle it. Like Scarlett O’Hara, I did not want to think about it right then; I set it aside to think about it tomorrow. However, tomorrow hasn’t come yet.
I tossed and turned last night thinking over and over about all the things that could have gone wrong, the things that did go wrong and the many many ways in which we lucked out so that T and I were together in the right place at the right time. What could I have done differently, what should I have done? Would it have made a difference?
After the birth, it was the physical feelings that bothered me. Whenever I felt my stomach a bit upset or passed a large blood clot I thought, “Oh no! The last time this happened I had a baby!” I have gotten over those horrors now, thank goodness. Now, how do I get over the sense of loss?
It would be easy enough to say I want a do over. Let’s try for number two and see if we can change things. I want to try this again and hope for a different outcome. The problem with that theory is, we do not know why Azure came so early. We cannot guarantee it will not happen again. We lucked out with Azure. Most babies born in their 24th week do not pull through the way she has. She was large for her gestational age; she did not have any major infections or bleeding. She struggled with the breathing, she had to have surgery to close her patent ductus (basically heart surgery), she suffered a blockage in the bowel and a collapsed lung, but she lived. She got through all of those things. She has scars and we do not yet know whether she will suffer delays in development in the future. But, she is alive and amazingly healthy considering her start in life.
If we risk all that again, it might not turn out so well. She could be an entire life’s worth of Karma for both T and I wrapped up into one big package. Here is the daughter you wanted, don’t ever ask for anything again. If we do ask again, whatever happens will be on our shoulders. Moreover, we will deserve what we get.
Thinking back about Azure’s beginning is all wrapped up in my head with thinking ahead to number two. Every time I think I might be willing to risk another pregnancy I go over what we went through to conceive her and to keep her alive when things went wrong. I do not wish to do that again. I think, “Fine, we will adopt. It will take the physical risks out of it for us and will be easier on us emotionally”. Then I think about the infertile couples who do not have any children yet and how I would be taking a child away from a deserving couple in order to add to my family. How can I do that to them? Is that really fair of me?
I have a beautiful healthy little girl. I would not change that for the world. It is my own part that I look back on with regret. I could not hold onto the pregnancy. Labor and delivery were a 20-minute blur of chaos. I keep thinking of when it was all done, Azure was getting set up in the NICU and T went downstairs to make some phone calls and I was left alone in my hospital room (room 911 eerily enough). I should have cried then. I should have let it all out and just wept and hugged my pillow and cursed and punched the air and the bed with my clenched fists. I did not do that though. I made phone calls of my own and I “sounded in good spirits”. I was completely detached emotionally. The thing that bothered me that day still bothers me. Everyone we told about the birth congratulated us. I am sure they didn’t know what to say. They asked how Azure was, but what could they really say at that point? “Good luck! I hope she pulls through!” No one acknowledged the gravity of the situation. No one said they were sorry she came early. I wanted someone to recognize the bad part, the sad part of the day. The day your child is born is supposed to be the happiest day of your life. T and I cannot say that. There was nothing happy about it other than the fact that they were able to resuscitate her (that is obviously a good thing, but not quite the same as overflowing joy at meeting your offspring).
It all boils down to envy. (This is why I would make such a bad Buddhist.) I want what others have, what I should have had but didn’t, what I still want but am now too afraid to go after. I want to turn back time to a year ago this week. I was in the 2WW and convinced the IUI had failed. I want to relive finding that second pink line, I want to relive that first trimester knowing what I know now, letting go of some of that anxiety. I want to relive those doctors appointments, push for more tests, and question the Braxton-Hicks, the edema, and the polyhydramnios. I want to seek help the moment I started feeling like crap instead of waiting it out for 18 hours before calling the doctor. I want to be able to get that shot to mature the baby’s lungs and give it time to actually get to the baby. I want to save my daughter from having to live life outside of the womb 3-1/2 months sooner than she should have. I want her to never have felt those needles, to never have been silenced by the ventilator tube, to never shudder at the loving touch of another person. I want people to think that she is special because of who she is, not because of how she entered this world.
Crap. Can you tell it is a gloomy rainy day and I didn’t get enough sleep last night?

Visual Aids

2006-09-14T11:22:00.000-05:00

Because I haven't posted pictures in a while...

Azure Elephant Trunks: To prove that her name fits her very well.

Tummy Time Gone Wrong: I think she will be a pole vaulter when she grows up. (Is it wrong that I stopped to take the picture of her before I lifted her back upright again?)

A Few Things

2006-09-12T13:33:00.000-05:00

T is trying. He has stepped up to comfort her while I ate dinner the past couple nights. Last night he struggled to find a good position where he could sit comfortably and she would settle down and stop fussing. (These two things are generally mutually exclusive.) He got frustrated with me for not telling him what to do, how to hold her, etc. I told him that I wanted them to find their own way. This pissed him off but he did get her to settle down and then didn't want to give her up when it was time for her bottle. Of course, he didn't want to be the one to give her the bottle either. Whatever, it is a step forward and I will take it.

I have stopped pumping. I haven't pumped since Friday. Twice over the weekend I became engorged and I put Azure to breast thinking that A) there would be plenty of milk there to keep her interested though not enough for a real feeding and B) if she refused it, I could always pump it out later. She took it. She did great! No chomping and her latch was better than I have ever seen it. If she had done this right out of the hospital I think we would have had a nursing relationship instead of a pumping/bottle feeding one. That being said. I am still ready to be done with the lactating. I will let her nurse a bit as long as she is willing and I am able. If I end up being a human pacifier that is fine too. As long as she is healthy and happy. Mentally and emotionally I am ready to "own my decision" which was T's only request. He didn't want me to look back with regret. I am happy not being slave to the pump, I know that much. Now I have to figure out how to return the Lactina and whether or not I should keep the Pump In Style at the office just in case. There have been a few moments of leakage in the past couple days and I do not want to be trapped with no means of release. (In a slightly related topic, my bra today is too small for my post-pregnancy rib cage. Ugh, I feel like I am suffocating, but I shall not go braless at the office. *wheeze, wheeze*)

In the Small World Department: My mother was at the back of the church on Sunday waiting to process in with the choir when she noticed a woman sneak in and sit near the back. She asked a fellow choir member who it was since she looked very familiar but she couldn't quite place her. She was the wife of the new man in the choir. She is a pediatric developmental specialist. OH! She was the ped we saw on Tuesday who said that Azure was right on target for 3 months adjusted and she seemed to be doing fabulously and we should just keep our eye on that reflux to see if that might be causing the apneas that seem to be alarming lately. What do you know? They are new members of my parent's church. My mom spoke to her after the service and she remembered us and said if we ever need anything, like a referral to a pulmonologist, just call. Um, YAY! It pays to know people, I tell you what. The President and CEO of the hospital where Azure was in the NICU is also an active member of my parent's church and he came down to the NICU one day to meet me and to check on how Azure was doing. That got the staff jumping! I am sure we received the best care possible even before his visit, but afterwards, knowing that he was interested in our case, I think they all just kept it in the back of their minds to keep us happy. It is almost enough to convince me to start going to church again. Ok, not really.

We see our regular pediatrician this afternoon. I am guessing we are over 10 pounds at this point. Holy Cow! She is solidly in 0-3 and 3 month clothes. I weeded out most of the newborn stuff, though she still has a few things that fit. She is still long and lean and has tiny legs. She also has a big head and a nice round belly. Amazing. A year ago this week we had our second IUI. I was convinced it wouldn't work, so much so that I got sloshed on Maker's Mark at the company golf outing that weekend. Little did I know that Azure's first drink would be Kentucky Bourbon! Oops. That week I was depressed. I was fully consumed by infertility and dreading the big IVF vs. Adoption debate since T was voting for IVF and I was all about adopting. It would have been ugly. I had no idea that one year later I would be getting ready to go to the golf outing as a fun way to "get away" from the demands of working motherhood. I shall not be getting sloshed this year, but I will have a good time and I will hug and kiss my daughter all the more before and after I go since I will not carry the depression with me this time. We have not had an easy road with our daughter but DAMN I am glad for the way things have worked out.

Daddy Time

2006-09-11T15:26:00.000-05:00

We recently purchased a new doggy shampoo, which for some reason is scented like boysenberries. Why? Ya, got me. I have never known a dog to smell like a boysenberry before. I suppose it smells better than, well, wet dog. Anyway, T was laying on the floor in front of Azure who was happily swinging and intermittently yanking on the links to make the swing light up and play music. I am not sure she realizes this is a cause and effect sort of thing yet, but she likes to hold things and to yank those things that she is holding (i.e.: my hair, my earring, T’s goatee, etc.) so the lights and music are actually just a bonus. I smiled down upon my husband and daughter who were making each other smile when T sniffed the air.

T: "Girl! You smell like a brown dog!"

Blue: "Does she smell like boysenberries?"

T: "Nope", he replied, "That is NOT what I smell."

Blue: "Oh, you mean she smells like the dog’s area out behind the garage?"

T: "Uh, yeah. I think it is Mommy Time again."

I changed her and T picked up the crying babe (diaper change = crying baby) while I was tossing the dirties. He was bouncing her, trying to soothe her and I thought I could make her smile over his shoulder. This backfired, big time. She saw me and reached for me, over his shoulder. She wanted her mother, not Daddy. Poor guy. He handed her off and went and sulked on the couch for a while.

Later, we decided to go to bed early. I asked him to hold her while I got her bottles ready in the cooler that I keep by the bed at night. He agreed but said he knew she would cry because she does not like him. Sure enough, she started fussing. She continued to fuss but I was busy in the kitchen, it was not my time to calm her, it was his turn. Eventually I heard, "I think she is calling for Mommy!" Seriously, it had not been 15 minutes. I know she calms for me. I know he doesn’t know what to do with her, but how are the two of them going to get to know each other if I run in there and "save" him all the time?

I keep hearing, "let him watch her". This may just be a difference of syntax, but I think I need to MAKE him watch her. Trial by fire and all that. I need Supernanny to come in here and tell him some things because it just would not sound the same coming from me as it would from a third party. Things like, "When she is upset it does not help when you cry louder in empathy. You should talk in a calm soft soothing voice and work on less stimulation rather than more". However, I fear if I say these things it will sound too critical and I do not wish to start a conflict on parenting style. He may just back away further instead of getting more involved. If she is in no danger then I think I should let him learn what works best on his own and by watching the way I do things.

So, when I go to my work social function on Sunday, Azure will be spending the afternoon at Grammy's instead of at home with Daddy, per his request.

How Are We?

2006-09-07T15:58:00.001-05:00

Lisa wrote:

Hey Blue,
I read your archives over the last few days and just wanted to tell you how much
I enjoyed reading your blog. Especially the parts about you and your husband's
relationship. I imagine you don't have much time to post now. But I have a few
questions:
How is Azure doing?
Is she at daycare?
How are you doing?
Is your husband helping out more now?
I am a mom to a 6 month old who works full time myself.
Take care!
Lisa

Well, thanks Lisa! Let me see if I can address some of these questions.

You are correct. The posting time is minimal but I will try.

How is Azure doing?
Azure is doing really well. She is up to 9lb 14oz and 21-1/2 inches long. She is eating six or seven 3oz bottles per day. She is getting some fresh milk, some frozen milk and some Neosure (preemie formula). She is smiling and “talking” more and more.
She is still struggling with the pooping thing, but I think I have figured out her schedule. She will poop two or three times within a two-day period and then go about five days before she fills her pants again. (I have gotten quite used to saying “fills her pants” as my mother detests the word poop and refuses to use it and hates it when I use it, etc.) The doctors seem to think this is just fine as long as her stools are soft. I have been told that “swamp green pudding” is nothing to worry about, which is good, because that is what we get most of the time.
If we feed her at around 11pm we can pretty much sleep through the night. I have been screwing this up lately however because I have been so tired we go to bed early which means she will wake up around 3:30am wanting a bottle. Our latest doctor’s appointment found her right on target for 3 months adjusted. We are thrilled!
On the not so good side, she has been having apnea alarms a lot lately. Over the summer she would have some here and there but the reports from the monitor downloads all said they were “not significant” or “not real”. Then, the download on 8/16 showed the apneas were real and one was very significant (22 seconds between breaths) and paired with a Brady (slow heart rate). They asked if she had turned blue. Um. No. I did not even know about it, and you are asking about something that happened two weeks ago. Now I look like an asshole. Since we found out about those apneas being real it has been ringing off all the time! (“all the time” would be once a day instead of once per 7-10 days) We have never taken her health for granted and always jump at the sound of the monitor even though the majority of the alarms are for the leads coming off. However, this has brought on a new heightened awareness and anxiety. I am now tracking poops and apneas to see if there might be a pattern. Is she pushing too hard and then wearing herself out? Maybe. It also might be related to the reflux. If she has milk stuck in her throat then she cannot breathe very well and that could set it off. We have upped her dosage of Reglan to see if this will fix the problem. I am keeping my fingers crossed.

Is she at daycare?
Azure is not at daycare. Her immune system is just not strong enough to be around other kids right now. Once we get her through next winter (her first full RSV season) then she should be strong enough to go. For now, we have a nanny who comes to our house two days per week and the other three days I take her to my mom’s house since she lives very near my office. We are working on making it so that I do not have to work anymore but for now finances require two incomes. I hope that next spring things will be set for me to stay at home with her. Of course, the irony is that next spring will also be the time she will most likely be able to go to a regular daycare.

How are you doing?
Wow. Thanks for asking. Most people ask about Azure but not T or me. I am tired and stressed and a bit overwhelmed at times. I have found myself tearing up at the drop of a hat. I think it is a matter of never having any downtime. I get up, get Azure and myself ready in the morning, go to work, and then it is right back to Azure until bedtime. Every.Day. I love my daughter, to the point of tears. I miss her intensely when I am at work. I prefer to hold her when I am at home rather than put her in the swing or bouncy seat, trying to make up for the time I have been away from her. BUT, it is getting to me. The constant pressure of things to do and fulfilling her needs and getting bottles cleaned and ready for the next day and taking a shower and remembering to pay the bills. This working mother thing ain’t for sissies.
I am still waiting on that missing period. I know they may not be so regular, but good grief can the cramping go away? How about the hormonal eating? I feel like a bomb gaining pressure increasingly every day and at some point I am going to explode and it will not be pretty. If all the PMS stuff would go away I would be more than happy to go on about my life and not worry about it. Blehck.
Reading this it sounds like I am heading for a major breakdown. It is really not that bad. I just need an outlet. Some time for myself to take a deep breath and not have any responsibilities on my shoulders for a few minutes a day. Right now, that comes in the car on the way to and from work, so I am listening to Harry Potter and the Prisoner of Azkaban on audiobook. Then I will listen to The Chronicles of Narnia: Prince Caspian. My commute is only about 20 minutes and it is a straight shot from one place to the other. I wish it were longer.
I am still pumping but instead of taking it month by month, I am now taking it session by session. I am a grumpy about it. I find myself asking whether or not it is worth it and I know the answer is “YES”. I also find myself wishing I could breast feed and I know that it would be a difficult transition to make and I would only be doing it for my own selfish reasons. I want that closeness with her, but I do not believe the dream of it would be the reality. She chomps rather than sucks and she is used to the speed of the nipples now and my struggling supply would not suffice. It is not worth putting either of us through that at this point. This is just one more thing that I wish had turned out differently. (You know, along with not having infertility and not having a micro-preemie and not having to work while my baby was in the hospital for 3-1/2 months.)

Is your husband helping out more now?
T is pitching in, in his own way. He does everything else around the house like cooking, cleaning, shopping and making sure that I have what I need to take care of Azure. The actual care is still my responsibility. We did have a major breakthrough yesterday though. I had a dentist appointment scheduled after work. The nanny usually leaves at 6pm but I would not be home by then. T relieved her and watched Azure, alone, by himself for an hour and a half. This was his first time doing this. I wish I could say it had been easy for him but she was fuzzy the whole time. (It turned out later she was working on another major poop.) The good news is that she did not alarm for him and once the poop happened and she had a bottle she calmed right down again. I hope this builds his confidence a bit. I think the more comfortable he gets with her the more he will take care of her and relieve me a bit. I sound pouty and I guess I am. I am envious of the time he gets to go down to the basement and play his GT4 game while I am still upstairs calculating medicine and feeding times and when can she eat so that I can eat and possibly pump before bedtime. On the other hand, I do not begrudge him that time with his game. I just want some time of my own.
I spoke to the nanny and she agreed to work a couple Friday or Saturday nights so that we can have a “Date Night”. We REALLY need some time together as a couple to reconnect.

*sigh* That was probably more than you expected. I guess I just had to get it all out while I was at it since I do not tend to write very often these days. The simple answer is we are mostly good. The tough parts are there but we are working on them and hopefully they will pass into memories sooner rather than later.

Good Question

2006-09-03T06:16:00.000-05:00

Azure and I attended a birthday party yesterday for my best friend A’s three children. They are turning 5, 6 and 7 this fall. They live out of state so we have to celebrate when we can. The kids don’t mind. It spreads the presents out.

This was the first occasion that many of A’s family and friends had a chance to see Azure. They have all been praying for her and sending good wishes to us through A but this time they got to meet her live and in the flesh. She performed beautifully. It worked out perfectly so that as soon as we got to the party she was ready to eat. I gave her a bottle and she promptly fell asleep for the remainder of the party.

A’s mom, who has been my “Other Mother” for over half of my life now, was holding the snoozing Azure while we all watched the kids opening presents.

She said, “Blue, she is so sweet! Don’t you just want to close your eyes and cry because you are so thankful to have her?”

I said, “I do sometimes”.

A.W.O.L.

2006-08-31T15:54:00.001-05:00

Absent Without Official Leave

AF is missing. Have you seen her? Not that I am all, "I want to cramp and bleed, please may I cramp and bleed?" No, not so much. On the other hand, I have been getting twinge/pains in the ovarian region(s) for about a week now and still no AF in sight. Actually, if I were one of those people who paid attention to mucus and such, I might think I was ovulating, which on CD 64 only makes sense if I completely skipped a cycle rather than find myself lost in the midst of one of those freakishly long ones. It is a bit disconcerting when you are expecting something at a certain time give or take a week and then here you find yourself month later and still nothing. I have been stood up!

Points of Interest:

I am no longer on progesterone which I took to regulate my cycles.

I am no longer on Metformin for help in ovulation (which might also regulate the cycles).

My face has broken out.

I gained the requisite weight and bloat.

Nothing in the undies to show for it.

I would say I am getting all the crap without any of the benefits but really, what are the benefits? I suppose one might say that a benefit would be just getting it over with instead of this drawn out state of PMS I seem to be locked into. I highly doubt it is the fact that I am still pumping since I only pump 2-3 times per day. Not enough to throw off my cycles, especially since I have already had a couple normal-ish ones since Azure was born.

One family member just had major surgery to remove a 5"x 5" cyst, the ovary and tube on that side. The other ovary was cystic but the Dr. thought she could treat it. Another family member (15 years old) is going in for her first gyno exam because her period won’t stop. We believe there might be something wrong with the Elephant Uteri. Ya think?

I fear for Azure’s future. I don’t want her to have to deal with this crap.

I Chickened Out

2006-08-28T13:48:00.000-05:00

I am still pumping. I will do it when I can and give her what I can. If that means pumping every twelve hours and getting minimal amounts, then that is what I will do for now. I will not be ordering any more Domperidone, when I run out then I run out. My supply seems to be coming and going. It came enough over the weekend to provide a plugged duct even though I was pumping more than during the week. We seem to have gotten past that and now I am back to a small amount per session again. *throws up hands* Who knows.

I do feel better about it emotionally now. I think I am in a better place to see what happens and roll with the punches. She is getting some fresh milk, some formula (Neosure Advanced with Iron, specifically for preemies) and mostly thawed milk from the freezer stash. I think I will just gradually shift the ratio from mostly frozen to mostly formula and keep giving her whatever fresh I can and eventually we will just end up on the formula. (Sounds easy enough, doesn't it? Yeah, and communism works on paper.)

In other news: The dog is showing signs of sibling rivalry. Not aggression or anything, just acting out to get our attention. She has started jumping up on the bed. She is not allowed on the bed. This has been the rule from day one. (She gets plenty of snuggling in on the couch, the bed is our space.) Then she refused to go for a walk with T yesterday. She got three houses down and decided that was far enough. She sat down and wouldn't budge. He brought her back home and thought maybe running would do the trick so he took off down the block at a light jog, she followed for three houses and once again put on the brakes and wouldn't go any further. I think she wanted at least me if not both Azure and me to go along on the walk. Poor thing. This morning I awoke to find the dog staring at me. Once she knew my eyes were open she started doing her "going out" dance. Normally I would send her back to her bed but I didn't want Azure to wake up and then have to feed her before taking the dog out and make the dog wait...again...for my attention. I think I might have my cousin come over next weekend to watch Azure so I can spend some extra lovin' time with the dog.

Azure has now officially made it up to my birth weight and length. I was 9lb. 7oz. 22"Long and she is 9lb. 8oz. 21"Long. I cannot imagine how my mother gave birth the something that size! 1lb. 15oz. hurt bad enough!

To Continue the Struggle of Pumping or Throw in the Dried Up Wrinkled Prune of a Towel

2006-08-24T15:26:00.001-05:00

Pros to weaning

No more sore boobs (Did you hear the collective sigh of relief coming from my battered cleavage?)
More time with Azure
Fewer demands on me/my time
Easier to prepare bottles & easier to travel
I can stop spending money on Domperidone which is no longer helping (or maybe that is what is allowing me to get the little bit I still can?)
I can have a real lunch hour again. Time to myself, time to run errands or time to visit Azure.
Fewer restrictions on my diet!!!! (Think of Homer’s voice saying, "Mmmm, peaeaeannnnnnnnuuuuts" and drooling.)
I can get the breastpump off its place on the back of the livingroom couch (for all the world to see)
I can sleep comfortably on my stomach again
It will allow me to be a better mother

Cons of weaning

No more antibodies for Azure, her health/immunity is a huge concern in this decision
Formula Poop, blehck!
I wanted to get to one year and will only make it to around 9-months-actual using the remainder of the freezer stash before it goes bad
Formula is more bubbly in the bottle, I worry about her getting gassy
I worry about drive-by parenting when seen with a bottle (Of course this happens with breastmilk too but at least now I can say "Hey, lay off, it is breastmilk!")
I spoke to the neonatologist who attended at Azure’s delivery the other day and she said she has been researching breastmilk and formula and has found that the donated breastmilk gives no more benefits over formula. The way it is frozen and processed, etc. destroys whatever special qualities the fresh milk has over the formula so you might as well use formula. She also said that no matter what they do to synthesize the breastmilk they just can’t get it quite to the point where it is equal. This blows. I wonder if my freezer stash is any better than formula at this point. (NOTE: The freezer stash will last us well into November.)
I dread pumping now since I used to get 4-6 ounces per session and I am now struggling to get 1 ounce per session
I worry about Azure’s digestion. She seems to really struggle to get the poop going. She is having a dirty diaper or two every few days but she gets gassy and uncomfortable while trying to get those out and I don’t want to make that worse. We are still giving her juice each day.
We have been told by more than one health professional that Azure would probably not be doing as well as she is if she had not had the breastmilk this whole time.
It will make me feel like a bad mother

I am glad I made it this far (6months / 2-1/2months adjusted). Many women would not have in my shoes, but I want Azure to have more time with the breastmilk (because she is a preemie and because she has had digestive issues). It used to come so easily for me and now it is a struggle and I don’t know why that changed and I wish I could go back to the way it was when she was in the hospital and I was just swimming in it. I thought that going back to work would help and it did at first. I actually added more pumping sessions to my day since I had a quiet place to do it with no distractions. However, I think the stress of transporting Azure and milk and our colletive stuff and getting to where we need to be on time plus trying to get her to sleep through the night (we are close, it is hit or miss at this point) is taking its toll on me.

There I was typing this out in a calm and rational manner when the thought struck me, "I am failing her", and I had to stop to CRY and pull myself together.

What do I do when what is best for me conflicts with what is best for her? Is her nutrition more important than quality time with her mother? Why does she smile more easily for others than for me? Is she reacting to my own stress?

I always figured that when I got to the point where I would move on from pumping to formula it would be by choice and that I might feel conflicted about it logically. What I did not expect was that I would feel so strongly emotionally. I think my feelings about this decision are all wrapped up with my missing her so much due to my return to work and the helplessness I feel at the fact that T is not as actively involved with the parenting as I had hoped he would be*. I am tired. I am depressed about my situation and I don’t have any time to myself to process these feelings. (Could hormonal changes be effecting my supply and also/therefore my mood?) (Does it matter that I am now on CD 57? I did test last week and it was negative. I was relieved. For the first time in 5 years I was happy to see a negative.)

Therefore, it must be time to blog about it.

I know that if I were reading this post on someone else’s site I would offer support and let them know that they did the best that they could, and their child is so much better off for it and they can now go on to building a better relationship without all of the pumping getting in the way. I know what I would say to someone in my place. I think though, that since it is me, I do not necessarily believe what I am saying. (Lala, feel free to slap me at any time!)

*I do not mean to make out like T is a bad father. He is helping by doing everything else, cooking, cleaning, shopping, everything that has nothing to do with Azure. He leaves her to my care, 100% my responsibility. It just gets draining sometimes never to get a break from her. Sometimes it would be nice to let him feed her and I could do the dishes, ya know? He does hold her and play with her but I provide all of her care.

PS. I told you I write when I have issues!

The Moment

2006-08-10T16:10:00.001-05:00

My entire life has been spent dwelling on the past and dreaming (sometimes in nightmares) about the future. I spent years in therapy which didn't help and then a few short months in therapy that did help. I spent my teen years waiting to graduate and go to college. I spent my college years waiting to graduate and move in with T. I spent my time living with T waiting to get married. Then I spent four years waiting to TTC and you know the rest from there.

I have spent my life trying to get over losing my brother at a young age and my parent's divorce. I was never happy with what I had. I always mourned what I had lost and wanted something more.

A couple years ago around Christmas I became really interested in Buddhism. I studied it in college along with the other religions that were part of my Comparative Religions major. (It was supposed to be my minor but I realized I only needed like two more classes for a second major so why the Hell not, right?) I was searching for something to fill a void in me. I needed something to hold me up in the face of Infertility. (Being an atheist this was sort of difficult.) I decided that Buddhism wouldn't work since the whole point is to let go of your desires and what Infertile can drag herself off to the RE for a post-coital and say she has honestly shed her desires? Yeah, it didn't really fit.

Anyway, my point is this. Even though it is hard and I am tired and I am stressed and I get overwhelmed now and again, I think I finally have what I have been waiting for. I have a beautiful home (small starter house with a wife-beating-drug-addict living across the street, but I love it anyway), I have a husband who is my best friend, I have a beautiful daughter who is beating all the odds this world is setting against her and a dog who loves to snuggle on the couch. (Ok, to be honest I still have Endometriosis and wonky works (CD 42 and counting) but I think that would happen regardless.)

My point is, I am happy. Busy and tired and happy. Which I think is why I have not been writing. I have mentioned before that I write when I am depressed. I haven't been depressed since Azure came home. I have been exhausted and I have had times when I needed a break, but I have not been depressed.

I think I will take a break for a while from the writing. I don't need it the way I did when I started blogging. It was always more for me than for the readers anyway. I also know that those readers changed when I got pregnant and changed again DRASTICALLY when Azure came so early. I have needed those readers. You Dear Wonderful People In The Computer! I needed the support so very much. But this is where I say, "It's not you, it's me" and "I still want to be friends!"

There is enough guilt wrapped up in motherhood for simple things like not clipping those fingernails before she sliced her nose open in the middle of the night, or not realizing until too late that she had pooped her pants and it had leaked out the side all over her blanket and the bouncy and by the time you realize it the mess had started to dry and solidify and she was almost stuck to the damn chair. (See?) I do not need to feel guilty in my life for not blogging (both reading and writing) right now. (Please note this is self-inflicted guilt not put on me by anyone else.) Things may change, possibly relatively soon (a month? six months?), but for now, what I need is a little space...in the real world.

We are doing great. If we weren't I wouldn't be writing this right now. Thank you all for your unbelievable support and encouragement.

For the time being, I am living in the moment.

de ja vue

2006-08-07T09:52:00.000-05:00

Back at work. Posting from cell phone while pumping.
Miss her!

Interview

2006-08-01T07:19:00.000-05:00

So what do I ask a prospective nanny?

Checking In

2006-07-31T11:45:00.000-05:00

We are fine, great in fact!
(I have tried three times in the past week to post and each one has been eaten before I could get it up. #%&$^@* computers! I love them so!)
I promise a real post soon with pictures and updates and all kinds of goodness.
For now, 8lb 2oz and 20 inches long! She is lovely and she is good humored and is starting to let me set her down for a few minutes at a time.
We have tentatively hired a nanny which is both good and absolutely frightening.
I actually have to go back to work next week.
NEXT. WEEK. (!!!!!)

I was asked about the amount of Domperidone I am taking. The answer is 3 tablets (10mg each) three times a day. I have enough to keep limping along without being overfull considering I am down to pumping only once or twice a day. This will improve I think once I go back to work and actually have a quiet place to myself to pump without needing to fetch pacifiers that have been flung from her pouty lips. We are supplementing both with frozen milk and with straight formula. I think she is getting the best of both worlds and I am not a complete wreck. WIN WIN!

She has a new nickname. PIPP (Yes, I thought of you LaLa.) which stands for Precious Inpatient Pretty Princess. She is all of those things! PippSqueak also works since she makes a sound that is quite squeakish.

More soon(ish), I promise!

I am still here

2006-07-05T18:38:00.000-05:00

My how time does fly when you are having fun. It is July. This means that I have only three and a half weeks left of my maternity leave. AHHHH! and Ugh!

She is 7 pounds today. That is HUGE. No really, 7 pounds and 19 inches long is like, well, like a newborn! She is one month adjusted! We have made it to the positive numbers! I can stop saying things like "she is 44 weeks gestation". Now I can say "she is four and half months or one month adjusted". No matter how many times I say it (and I find myself saying it a lot because GOOD GOD, I CANNOT WALK THROUGH THE FREAKING GROCERY STORE WITHOUT 10 PEOPLE STOPPING TO ASK ME ABOUT THE CUTE LITTLE ITTY BITTY TEENY TINY BAAAABBBBEEEEE!) everyone gets a confused look on their face and I have to explain what adjusted means and it just sucks. Why can't every Tom, Dick and Harry know as much as you lovely Internets?

The good news is that very close to her actual first birthday (MIL asked yesterday which birthday we are supposed to celebrate, when she was born or her adjusted date. *eyes rolling*) she will be receiving the gift of a new baby cousin. YAY! We just found out that TBSILE (The Best Sister-In-Law Ever) is expecting #2. Again, I say YAY!

I just picked up one of these today and so far I am LOVING IT! I highly recommend it for those with wee ones since most carriers are designed for well, normal sized babies and their poor little legs get stretched out too wide and they end up just flopping around on top. (The picture there looks like the kid has been absolutely flattened which might argue with my leg-spreading point but it is totally adjustable and, well, look at the size of the kid!) This wrap works in front (tummy to tummy and facing out), hip, back and nursing cradle position. FABULOUS! Azure is as we speak drooling all over my cleavage but you know what? I am typing with too hands so WHO CARES!

Also, the home nurse visited from the County Health Department today. She suggested I mix 1/2 ounce of pear juice with 1/2 ounce of water and give that to her every day as a natural laxative sort of thing so that we don't have to rely on the suppositories when things get stopped up. I bought some this afternoon and told Azure she will be enjoying her first "treat" of Poop Juice this evening. (She hasn't moved anything in three days, since the last suppository was given.) Hopefully the Poop Juice will work, and I will owe the nurse a huge big ole thank you kiss. Or something.

In conclusion, still here, still lurking, still loving my temporary stint as a SAHM and missing you all.

PS - The Domperidone is working! She actually nursed for 20 minutes this morning on the left side and I was actually getting engorged! I know they always say that is a bad thing but you have to understand how soft and empty they girls have been for the past month. It was nice to feel full again. I need to be more strict with my pumping schedule, something that will actually get easier when I go back to work.

Here's a Story

2006-06-30T06:37:00.000-05:00

I grew up loving The Brady Bunch. Why wouldn't I, being a child of the mid-seventies? Lately I have been addicted to the Celebreality series My Fair Brady: We're Getting Married. It is like a train wreck, I can't NOT watch it. Man do they have issues. How many times can he say he doesn't think they are ready to get married? How many times can she say she doesn't think he wants to marry her? And yet, they continue their march towards the alter. Hmm.

This morning however it was a different kind of Brady that caught my attention. Azure stopped breathing, turned blue and her heartrate crashed. I never would have known had the monitor not gone off. I was this close to having T call 911 but I was able to suction her out (a HUGE amount of milky mucus plugging up her airway) and stimmed her for FAR. TOO. LONG. and got her going again.

And I thought yesterday was bad when she got her four month shots at the ped's office. I have never heard screaming like that in my life! But I would take that over the blue and non-responsive anyday. Blue is my favorite color, just not on my daughter's skin, thank you very much.

Answer: F-L-E-E-T

2006-06-28T18:34:00.000-05:00

Question: How do you spell relief?

You might well remember my battles with the progesterone supps in early pregnancy. Those days when I thought I was pushing so hard to have a movement that my whole uterus (baby and all) would pop right out. Those days when I was slave to the Prometrium. Ugh! I bought a canister of Metamucil (orange flavor) which is still sitting in the kitchen cabinet, completely untouched since going off of the progesterone (horrible, rotten stuff). I must admit that I have joked several times in the past couple days about mixing a bit of that lovely orange powder into Azure's bottles. The poor child has been straining and grunting and SPITTING UP LIKE CRAZY trying to fill her diaper and it just wasn't going to happen.
I keep notes. I looked back at those notes wondering when her last dirty diaper was. I saw check boxes marked "wet fart" and "wet mess but nothing of substance" and I realized that the last GOOD stool she passed was on Sunday. SUNDAY!!!!!
Before she left the hospital she was "getting a chip" (a glycerine suppository) once every 24 hours if she hadn't stooled in that time. They weaned her off of them to go home. She hasn't had one since. When you look at your baby and realize she has continued to take food in for half a week but has not passed it back out (wet diapers not withstanding) you begin to wonder just how long it will be until she explodes. Then she has an episode of "nasal reflux" which means milky snotty vomit pours down her face from both nostrils and her mouth and you don't know where to apply suction first, and you realize that she IS exploding, only it is going the wrong way.
We have an appointment with her Ped in the morning so I thought about just waiting. Then I thought about how miserable she is and how it would just get worse overnight. I called the Ped's office. A warm bath they said. Stimulation with a rectal thermometer they said. Half of a glycerine suppository they said.
BINGO!!! I was off to the pharmacy.
She got the warm bath. Nothing. She unhappily put up with my mother holding her down while I did the dirty deed of the rectal stimulation with a greased up thermometer. Nothing. I squeezed in slightly more than half of a glycerine suppository, put on her diaper (one that was sure to leak per brand and the fact that it was too small, I figured I would play the odds) fastened her onsie, picked her up and PFFFFFFFFTHTHTHTHTHTHTHTHTH. Problem solved, out both sides of the diaper, up over the top, on my hand and spreading. Then it happened again!
I held her still (much easier now that she was happy again) while my mother fetched us a clean diaper (a good one that actually fit this time)a new onsie and the wipes. It took the both of us to clean her up and change her. I then sent her into the livingroom with Azure for her 5pm bottle (even though by this time it was more like 6pm) while I disinfected the kitchen (warm bath having taken place on the kitchen table while the remainder of our operation took place on the counter)*.
Results? A HUGE sigh of relief from a now peacefully sleeping Azure and one slightly less stressed out (but PMSing**) Blue. :0)

*You, like my mother, are probably freaking out at the thought that all this fecal matter (more like splooge) was applied liberally to our kitchen counter and floor. Please believe me when I say that it is the highest, largest and most easily disinfected workspace in the house and I have Lysoled and Cloroxed the place to a gleaming finish and will do so again before food is once again prepared in that same spot. I don't really care, my baby finally pooped!

**Yesterday just about did me in with the crying and refluxing and constant uncomfortableness that I could not do anything about. I was tired and frustrated and angry at myself for wanting T to watch her for a few minutes so that I could eat dinner and pump***. AF showed up this morning and the lighbulb when on. OH, it wasn't a case of "would someone please take my baby" it was just hormones! WHEW!

***The Domperidone arrived today. I am keeping my fingers crossed.

Freezer Stash

2006-06-22T08:55:00.000-05:00

Got Milk?

Boobs Again

2006-06-19T12:27:00.000-05:00

So I am now on my third yeast infection in as many months. Azure has not once shown signs of thrush, but, it seems I continue to get it over and over again. It hurts, my supply is shit. (1-1/2oz this morning when I used to get 8-12oz first of the morning pump). I spent the weekend trying to come up with a way to pose the question to T about whether I should continue to pump or not. Azure is not allowed to exclusively breastfeed. She requires extra calories and nutrients so she is getting breastmilk fortified with formula. That is to say the formula powder is mixed into the breastmilk. (Some people have confused the fortification with thinking that she is getting some breast milk and some formula, this is not the case.) The Ped told me specifically not to nurse her exclusively yet and at this point, with the yeast infection again I have not been nursing her at all the past few days.

Here is my issue. I know that for a preemie with a heart defect she needs all the immune boosting help she can get. I know it is better for her and for me to breastfeed for the first year. While she was in the hospital and I was running out of freezer space for all the uber lactating I was doing this did not seem like a difficult task at all. However, now that she is home and drinking as much fresh squeezed boob juice as I can muster and I am still raiding the freezer on a regular basis and my supply is dwindling... I am entertaining thoughts of giving up.

Following is my thought process:

1) I just ordered a one month supply of Domperidone. Our Ped/LC was not only un-opposed to my taking it, she is very interested to see how it works for me as I will be her first patient to try it. So, I have decided to commit myself to at least one month on Dom to see how it goes. If things improve, then I may continue with no other concerns...except these blasted yeast infections. (Yes, I sterilize my pump equipment and change my bra every day.)

2) If I were to quit pumping at the end of my Domperidone trial period the question of how to go about feeding Azure comes into play. Do I feed her out of the freezer stash until it is gone so that she gets exclusively breastmilk (fortified) as long as possible and then switch over to formula?
-OR-
Do I feed her some breastmilk and some formula every day to make the freezer stash last longer and therefore stretch out the time period of nutritional benefit from breastmilk? (Did I read somewhere that freezing the milk kills off some of the antibodies in the breastmilk so it might not matter anyway? I can't remember and am too lazy at this point to look it up.)

So, where does that leave us? I will pump for at least the next month and a half (7-10 days shipping then 30 days on the pills) and see where we stand then. That would put us into August when I plan on returning to work, adding more stress to our busy schedule. Also, she would be almost 6 months old.

If it looks like I will need to stop (for my own health and sanity) then I will take up the nutritional questions with our dietitian assigned by the county health department and our Ped.

NOTE: I am drinking lots of water and pumping about 4 times per day, (although the minute I turn on the damn pump is Azure's cue to start crying/coughing/alarming/etc.) and rest is something I heard about once in another life but I think it is actually just a rumor. My boobs have gone soft where once they were full and firm and it takes so much breast compression to get the milk out T is afraid I will actually hurt myself.

I find myself looking for that bar with the mechanical bull.

One Handed Bullet Points

2006-06-11T09:41:00.000-05:00

*This motherhood thing is hard work!

*I do not think I fully understood the concept of 24/7 until now.

*The reflux is definitely a challenge. The gurgling in her throat just makes me shudder. It sounds like that scene in the beginning of the movie Scream where Drew Barrymore has been attacked and her mother picks up the phone extension and can hear her talking but there is that sick gurgling sound. It sounds like she is drowning in her own body. There is not a big enough bulb syringe in the world to get this milky mucus out. Blehck! The fact that she seems completely comfortable and oblivious to the milk streaming out of her nose makes it a bit easier to take. It bothers me more I think. It bothers T a ginormous amount.

*My milk production has taken a nose dive. For a while I was humming along pumping 2-3oz or more out of each breast at each pumping. Now I am lucky to get 2-1/2 to 3oz total per pumping. I must talk to our ped on Tuesday, she is also a lactation consultant. They say the best thing for your milk supply is rest, water and frequent pumping/nursing. I have lacked all three in the past week.

*It is easier to find Huggies preemie diapers than Pampers preemie diapers however the Pampers do not leak and the Huggies ...let's just say the Huggies make me have to do more laundry.

*I feel like at any moment someone will show up at the door and tell us there has been some terrible mistake and we have to give her back. I suppose this might be a bit like an adoptive parent must feel the first week at home. (?) I look at her face and see she has the Elephant Family nose and I still think, "Where did you come from?"

*I have a couple of fabulous kids books to tell you about but that will have to wait until I can type with two hands.

*A word to the wise. Try to keep the home monitor plugged in as much as possible since the alarm will go off at the most in-opportune time to tell you the battery is running low and you will mistakenly think that your child is dying when in reality you are simply the dumbass who forgot to plug her back in.

We're Home

2006-06-06T07:11:00.000-05:00

I am very sleepy and very happy. The reflux is bad so she must remain upright at all times. This means that the bassinet and crib are not getting used as much as the bouncy and swing (turned off). She prefers to be held.
The dog is doing great, she comes running to "help" whenever Azure makes a peep. I think if we let her she would lick the skin right off the baby, so we are not letting her.
We are all smiles and sleepy drooly yawns.

Allllmossssst there...

2006-05-31T09:31:00.000-05:00

Ok, so I stole the title from Star Wars. (Can you name the scene?)
So I went to the baby store yesterday and bought everything I thought I MUST have before she comes home. This included a crib, mattress, mattress pad (waterproof and antimicrobial non-allergic, etc.), bassinet sheets, a video/audio monitor, diapers, wipes, a seat protector for under the car seat, a rearview mirror to allow me to see her in the rear-facing car seat and a couple bulb syringes with which to suck the nasty mucus crap out of her throat so she can breathe, cuz that is important. *sigh*
T saw me bringing in the loot and we agreed upon a "Don't ask, Don't tell" policy in regards to how much money I spent. It really wasn't that bad considering the cost of cribs these days and mattresses that range from $50-$200. (Can you tell me why I would need a 30 year warranty on a baby mattress?) We are ready. *Gulp*
We completed our CPR training last night and are scheduled to Room In on Friday when we will learn how to use the take home monitor. Saturday midmorning we could be taking our daughter out of doors for the first time in her life. She has never felt the wind on her face or smelled the sweet...ah, who am I kidding, the oil and exhaust of the hospital parking lot. Anyway, you get the idea.

She is now 5 pounds 1 ounce and looks like a real baby. Incredible!

Nesting

2006-05-27T08:43:00.000-05:00

This weekend we are nesting in the Extreme Home Makeover kind of way. T is building a second bathroom in the basement (plumbing already there, we just need the room and the stuff hooked up, etc.), we had central air installed yesterday which will be a life saver this summer when it is 80F with 1000% humidity and Azure is literally stuck to my boob with sweat and dribbled milk. I am also painting the back stairway and doing more laundry than I ever have in my life.

Why all the fuss?

She might be home next weekend! Holy Shit! How did this sneak up on us? How does one become comfortable with the schedule of hospital work home hospital sleep hospital work, etc.? We will do CPR training today. Tuesday or Wednesday we get trained on the take home monitor. Friday will be a sleepover at the hospital and then next weekend we expect them to boot us out. This is a tentative schedule based on how we do, how she does, what they have going on at the NICU, etc.

Again, Holy Shit!

Better go, Home Depot is calling.

I didn't think she could find me

2006-05-25T14:47:00.000-05:00

while I was hiding in the NICU but she did.

AF is back.

CD1

*sigh*

OMG Azure is F&G!

2006-05-23T12:42:00.000-05:00

Which IMNSHO* is better than G & D**!

She is a Feeder & Grower. Just Wow. She was moved to a big girl bassinet up in the front of the room again. The same place she was when she had her big set-back last time with the bowel obstruction (and was quickly moved back to the back corner). The nurse last night said this move is like taking "two steps out the door". This leaves me nervous, excited and feeling HSSMACH***!

* In My Not So Humble Opinion

** Gorgeous and Divine per the lovely and talented Tertia

*** Holy Shit, She Might Actually Come Home

(!!!!!!!!!)

Not Competition, Just Recognition

2006-05-22T16:08:00.000-05:00

Saturday night as we were donning our hospital gowns and srubbing our hands in preparation for entering the NICU, we were engaged in conversation with another NICU visitor. He was apparently waiting in the family lounge while his wife and (I assumed) a grandmother visited his son (their third child) inside. He was one of those happy talkative types that drive me crazy. I probably found it so irritating because I was in that sort of manic state trying to rush through things as quickly as possible so that I could get inside and see my baby andwhyareyoustandinginmyfreakingway!

Ahem.

So anyway, he started telling us his life story, blah, blah, blah and lamenting the fact that they had been doing this "SINCE WEDNESDAY"! I didn't scoff at the man or call him a sissy or anything. I know that having a newborn in the NICU is tremendously taxing no matter what the gestational age or how long the child has been in there. It is not a contest this NICU Parenting. I know that.

However, I did have to smile, nod my head and say "Oh, we have been here since February." It is not that I wanted to one-up him or make him feel badly. I just wanted a little recognition for the difference in being there 4 days as opposed to 90-some days. There is a difference.

Sunday morning I sat rocking Azure while she was getting her 11am feeding. She quite gassy and uncomfortable to begin with and not at all in the mood for a bottle so we decided it would be a gavage (tube) feeding. They put the tube down and she rested against my shoulder and we rocked and rocked and I talked quietly to her during the half hour feeding. I tried not to notice the man across the room staring at me, probably silently wishing me death threats as he sat next to his son (his third child too) who was full-term but having serious breathing issues and is "low stim" (no holding, very little if any touching). I felt him looking at me and I tried not to stare back. I feel so badly for this man and his wife who is sick and still mostly bedridden somewhere on the floor above us. I feel this man's jealousy at my "luck" for being able to touch and hold and rock my baby. I can put her nasal cannula on by myself and lift her out of the bed myself and rock her and do those things parents are supposed to be able to do. I want to tell him that I have been there, the low stim days, and I know how hard it is and I am so sorry his son is going through this. His son who is easily twice if not three times Azure's size. I recognize his side. I do not think he recognizes mine and I wonder if I should explain it to him or not.

Last night we were back for Azure's 8pm feeding and this time she was all pooped out (diaper filled, not tired) and raring to go with the bottle. The man was there again and watched as T fed her the bottle. This time though his nurse spoke to us from his son's bedside and mentioned that Azure has the seniority in the NICU both as the eldest baby and longest in residence. She asked us how many days we had been there and we figured out the number was in the 90s. Then, then I think the man understood, he could recognize our side, a little.

It is not a competition and no one will win or lose. We will all go home eventually either with or without our babies. We must recognize the love and the struggle and the spirit that goes into being a parent of a child in the NICU (or any child who is hospitalized at any age, for any reason). I have said before that I do not know how anyone does this with one or more children at home to care for. How in the world do you do it Sol? Compared to them I have it easy, compared to others I have a more difficult path to follow.

I felt kind of bad about making my comment to Mr. BeenHereSinceWednesday but I mentioned it to our nurse and she said it was probably good for him to hear that. It allows others to recognize their own place in the order of things.

It could be worse, it could be a whole lot worse.

Can't I Just Have SOMETHING Be Normal?

2006-05-19T11:16:00.000-05:00

This is the question I asked the two lactation consultants (NICU nurses and also LCs. How lucky am I? Very!) this morning as they stood there staring at my bared breasts consulting each other about the possibilities. What I thought was a pimple last weekend turned out to not be a pimple. I then thought it was a clogged milk duct and was concerned a bit since it wasn't going away and was turning red. (Red spots on the breast are a bad thing, mastitis kind of bad.) They questioned me daily as to whether I felt flu-like symptoms.

"No, I feel fine but it is still there!" I would answer them.

Last night I made Booby Soup. T thought I was out of my mind but the nurse backed me up on it. I filled a bowl with hot water, placed it on the counter and then leaned over it soaking the one breast until the water went cold. I then replaced the cold water with new hot water and repeated the process, all the while massaging and kneeding and hoping that little bugger would just pop loose, spurt out a torrent of milk and we would be done with it. No such luck.

Which leads us to this morning where I once again baffle the medical community. I called my OB/GYN right from the NICU. She was on the other line and would have to call me back. When she called back she ended up talking to one of the LCs which probably turned out to be best. Nothing like hearing someone else descibing your fucked up breasts from across a crowded room.

The result? Antibiotics 4 times per day for the next 10 days to treat what they believe is a staph infection. On top of this I shall resume treatment for yeast since I might actually have that back too. Oh Joy.

I microwave sterilize my pump parts right BEFORE each pumping session so they should be nice and clean each time. Can someone please tell me how I keep ending up with the sore boobies? This is getting really old, really fast.

Will it make me rethink pumping? Will I quit in the face of adversity, pain and the challenge of now lugging around creams and premoistened cloths with which to regularly treat my fucked up nips? HELL NO! I have not squeezed the hell out of these sore and achy milk taps for the last three months to give up now, right when Azure is learning to eat. Not in a million years! I have Endo! I am used to going about the day-to-day in pain. *sigh*

I just wish SOMETHING could be easy, normal, not a challenge.

Azure by the way is doing much better. We implemented the following changes.

Nasal Cannula on to provide oxygen and a little bit of pressure during nipple feedings. She will alternate nipple feeds with gavage (tube) feeds every other time. She will be held at an upright angle following feeds to help with the reflux. Her Prilosec dosage has been increased to cut down the acidity of the spit up so it will be less uncomfortable for her when she does spit up. Let's face it, she is a baby, she will spit up. She is getting glycerin suppositories every 12 hours to help get the poop out. These will also be carefully timed so that she is not pushing out a poop while trying to eat because pushing out one end while taking in the other is just counter productive. She seems much more relaxed, much better rested and SO much more comfortable now. It sucks that we have to make such a fuss to raise the red flags and get these changes implemented but if that is what we have to do then we will do it. She is better off for us making the fuss and the NICU staff all say she looks better now.

Between a Rock and a Hard Place

2006-05-16T11:09:00.000-05:00

Poor Azure seems to be in a catch-22 situation.

The Rock:

The reflux has raised its ugly head and is causing us some concern after feedings. She spits up a bit, but not all the way, only into the back of her throat. You know, cutting off the airway and all. Thus, she stops breathing and her heart rate drops and she has a brady alarm. We are not talking about a little dip here. We are talking about a heart rate below 100bpm and oxygen saturation levels in the 40% range. These require more than a little pat on the back and encouraging words like, "take a deep breath honey". We are talking vigorous stimulation and grabbing the oxygen mask off the wall and taking, in my opinion, way-too-fucking-long to come back around. This occurs during.and.after.every.meal. Not fun. I am thinking about renaming her Brady R. Trunks (the R. being for Reflux). All of this requires that she remain upright after her feedings. I have held her, the nurses hold her, they even tried putting a bouncy seat in her bed and propping her up with rolled blankets! It sort of works, sometimes. Basically, if I am holding her I can start stimulating her before she crashes all the way.

The Hard Place:

She's backed up again. The girl needs to have a movement. She is tooting her way through the day but she needs to actually get something out besides air. This is best done while she is on her belly with her knees tucked up under her and her butt sticking up in the air. We know this, we can count on this. However, see "The Rock" above.

Upright and lay-on-tummy do not co-exist. The result, one uncomfortable Azure. One tired but resigned-to-find-a-solution mother and a Pissed-off-Asshole of a father. Pissed-off-Asshole is T's way of advocating for her when I am not there. If I am there he tells me what he wants and I tell the nurse. If I am not there, he has to do it himself and he is, well, not as politically correct as I am. The good nurses, like Fabulous Nurse, know this. They know us, they know Azure and they work with us.

Ok, now for the good news. (Yes, I have that too!)

She is maintaining her own temperature. She no longer needs the bed warmer and will soon be moved to a bassinet. I believe the bassinet signifies official "Grower and Feeder" status. We are close, we are oh so close. Want more? Good, I have more.

We nursed last night for the first time. We are not very good at it yet, but we will keep trying. Considering her very small mouth and my very NOT small nipples. It could be a challenge, but she roots around a lot and is a voracious sucker. I am not ashamed to admit she is a bit intimidating with the suckage. *cringe* More? You want more?

Ok, she is now 4lb 1oz. (1860grams) and 16-1/2 inches long. Today marks 37 weeks gestation and tomorrow will be 3 months old.

I started watching "Little Man" this morning while I pumped. (I do that, tape movies and shows and then watch them in short bursts while pumping.) So far I have cried three times. When Nicole the mother gets to hold Nicholas the micro-preemie for the first time I just lost it. It is something that many people just don't understand. That and minimal stimulation times when you are not allowed to touch the child or talk to him or play his music or read to him or do those things that you feel make you a mother. When what you want most of all in the world is to mother and you are not allowed to do those things. That is so hard. I am sure I will have more to say once I have seen the rest. So far though, I am loving it. It is touching and so deeply deeply personal and close to home.

A WTF Day, Nurses and Mother's Day

2006-05-12T13:42:00.000-05:00

I recommend if you are going to a garage sale at your girlfriend's house and she lives out in the middle of nowhere and you have never been there before and you followed her turn by turn directions to get to her house, do not call your husband to tell him you are running late and will be home in half-an-hour (so you can inhale dinner and head to the hospital for feeding time) because while you are on the phone you will miss your turn and end up 50 miles PAST Bum-Fucked-Egypt and will have to drive around aimlessly trying to find phone signal to once again call your husband and have him look up your location on Map-quest (thank goodness for DSL service) and have him talk you back to the highway so that you can then get home an hour and a half later than you originally intended at which time your bladder explodes because on the way to the garage sale you drank 32 ounces of your famous coffee/hot chocolate mix since it was cold and rainy and you thought it would be soothing. It did not end up soothing enough.

Once home and starting to feel a bit better about your ordeal you will learn that your husband has cooked dinner and enjoyed a few beers whilst awaiting your return due to the fact that he was rear-ended in his car on the way to the gym that day and that while the car looks none-the-worse-for-wear the S50 (Sirius satellite radio receiver) was knocked off of its docking station and has since not worked properly and his neck is a bit sore and he is hoping it will not stiffen up to become very sore the following day. His head is about to explode with anger making you grateful that he is sitting there telling you this story at home rather than you finding it on the late news in a road rage expose.

All of this is sorted out and stories told over dinner which is eaten very late and takes up your whole evening which in turn makes a trip to the hospital to visit your daughter impossible since you both need to get to bed so that you can get up early the next morning and go back to work. We called to talk to Fabulous Nurse* and are assured that Azure could really care less whether we were there or not as she was inhaling a bottle at the moment.

The brightest spot of the day? Finding out that Azure had an excellent day and is feeling a bit more energetic despite the anemia and jaundice she is struggling with and is knocking on the door of 4 pounds.

*sigh* Is it the weekend yet?

*T and I have little names for the different nurses that we have encountered over the past 12 weeks. (12 WEEKS!!!!)

Our favorite is Fabulous Nurse who works nights and we just LOVE. In a weird freaky coincidence we found out that her SIL is my step-brother's secretary. Small world. Anyway, it was Fabulous Nurse who was there the night that Azure took her downward spiral with the bowel obstruction. This was more than just apnea, the woman had to bag her to keep her breathing! She then handed her other assignments off to another nurse and sat by Azure's bedside the entire night to keep an eye on her. She marveled at my pain tolerance when I was dealing with the double yeast infection and praised my continuing to pump in the face of such agony. She also jumps right into the sarcastic humor bantered back and forth between T and I and we love that. I want to do something nice for this woman when Azure gets out. I think I will cry when we say goodbye to her. I will miss seeing her on a regular basis.

There is also Nurse Christina Ricci so named because she looks like the woman's TWIN only from back in the Adam's Family days! Good nurse but absolutely no personality. The hard part is trying to remember her real name since in my head I call her Christina. One of these days I am bound to slip.

Then there is Nurse Church Lady who not only looks like the Dana Carvey character but acts like her too. Very preachy and couldn't wait to tell us that her husband works at the local [Anti-Choice Organization] office. I SO want to get a preemie sized onsie that says something like "My Parents are Pro-Choice Atheists and VOTE!". However, I figured I had better not stir the pot unless I could be there through her whole shift to ward off evil spirits.

There is another nurse I love but I don't have a good name for her. All I know is that she came up to me this morning and said, "I want to be the first one to wish you a Happy Mother's Day**!" and gave me a hug. How cool is that?!?!

**Mother's Day is fast approaching and I don't know how I feel about it. All I know is that I still do not feel like a mother and I just want to spend the whole day with Azure which means packing myself a lunch and parking my butt down at the hospital all day. This will have to start later in the day than I originally planned since the Elephant Clan (grandparents, aunts, ucles, cousins, etc.) will be meeting for breakfast at 10am so I will not get to the hospital until around noon. That sucks! If my grandparents weren't going to be there I would skip the whole thing but since I only see them every once in a while (they live in Florida half the year) I want to visit with them while I can. They will not be around forever, ya know? I assume T has something in mind for Mother's Day but I don't know what and I am actually hoping that no one makes a big deal about it for me. I just really don't feel like it applies to me yet. It makes me a bit uncomfortable. Most women want a day OFF of mothering on Mother's Day. I want to actually BE a mother on Mother's Day.

little man the movie

2006-05-11T11:26:00.000-05:00

little man the movie

I have not seen this documentary yet but it will be showing on Showtime tomorrow night at 8pm and I will be taping it. (We will be at the hospital at the time since that is feeding time.)
If anyone else watches it, I would be very interested to hear what you have to say about it.

When you don't know whether to laugh or cry.

2006-05-09T14:33:00.000-05:00

So, I thought it was bad last week after pumping at work when I managed to squeeze 6-1/4 ounces of milk into a 6oz storage bag (I had missed the previous pumping, I usually get somewhere around 4oz. per session) and then dropped it on the floor, in the middle of the office, losing at least two ounces and quickly having to clean it up and hoping no one walked by and saw the big white puddle in the middle of the dark blue carpeting and not having to ask what it was because it would have just been so completely obvious and gross and laughable and humiliating and I would never hear the end of it considering I work with all men most of the time.

Yeah, I thought that was bad. Then today

after pumping at work when I was pouring the milk into the storage bag but missed the edge and ended up pouring it into my lap instead so that I was surprised and stood up bottle in one hand, storage bag in the other, big huge wet mark across both thighs and my boobs still hanging out of my shirt I had to question the age old saying.

At what point does one cry over spilled milk?

Amazing

2006-05-08T11:52:00.000-05:00

Drinking from a bottle twice a day. Gavage (tube) feedings the rest of the time.

Off oxygen except for a little "blow by" when she eats or gets a little tired and forgets to breathe.

3 pounds 11 ounces.

"Very slight beginnings of Stage 1 Retinopathy of Prematurity" according to the eye doctor yesterday. Being off the oxygen and gaining weight will help this and we suspect she will not have much if any trouble with it in the future.

I am blown away by the progress she has made in the last two weeks. Crazy amazing kind of good that leaves me anxiously waiting for the other shoe to drop.

6 Silly Things

2006-05-03T21:19:00.000-05:00

I have been tagged! It has taken me a while to comprise a list but here goes...

1) When in the high school band we wanted to take a trip to a band competition in Florida. Being from Michigan you can realize what a big trip this was for us. As a fundraiser we put on a car wash in the school parking lot. The school is on a busy street so we had a lot more business than we originally anticipated and quickly ran out of paper towels. I was sent to the store across the street to buy more. I ran quickly, grabbed the largest package I saw, paid and ran back. It was only a few minutes later as I waved my sign at passing drivers that I realized my mistake. I had purchased a HUGE package of toilet paper, not paper towel. Oops. They were right next to each other on the same shelf. I looked at the package of paper towel and grabbed the package right next to it thinking it was the same thing. Um. Not so much.

2) In college I became obsessed with the movie When Harry Met Sally. I would pop it into my VCR and fall asleep to it every night. I am a huge Meg Ryan fan and think that she and Billy Crystal had such wonderful chemistry in that movie. I think I like the fact that you love these characters in spite of their flaws. I still watch it once in a while but not nearly as often as I used to.

3) I enjoy spontaneous movies and hair cuts. I will decide to see a movie some afternoon, go to the theater and buy a ticket for whatever is playing right then. I don't look up the movie to see what it is about or who is in it or anything, just go based on the time I arrive and what is showing. I have seen some good and some not so good movies this way. I highly recommend it.
I am the same way with hair cuts. I will just get it in my ass one day that I need a change and will stop by some $12.00 hair cut place, pick out a picture in a style book and tell whoever gets to be my stylist that day to make me look like the picture. I will admit this is also a hit or miss situation. The last time I got home and T looked up at me and said "What the hell happened to your head?"

4) I have this romantic dream of sleeping in late on a Sunday morning and then spending the rest of the afternoon laying in bed with T and the dog and reading the newspaper as we drink coffee and eat bagels while the sunlight flows into our bedroom through the long billowy white curtains.
This.will.never.happen...ever.
First of all, the dog in not allowed on our bed. Secondly we do not have long billowy curtains in our room, or any room for that matter. We have 2" faux wood blinds on every window of the house, no other window treatments. Thirdly, T does not drink coffee and very rarely eats bagels. Fourthly, we do not get the newspaper and I cannot remember the last time I actually read one. Fifthly, the room I envision is large with high ceilings, tall windows and space to move around the bed. Our room is actually the attic which has been drywalled and carpeted to convert it into a bedroom. Not exactly the dream. *Sigh* I suppose that is why they call them dreams. I still find the image relaxing, I gues that is what counts.

5) I love 80s hairband music. No seriously. Sirius satellite radio has a station called "Hair Nation" and I LOVE it. Bands like Faster Pussycat and Junkyard who I haven't heard since high school are getting regular rotation on this channel. I must say that since there is a whole channel devoted to this music I cannot be the only one who loves it. Seriously, am I a freak? I belong to a niche, I just don't know anyone else in the niche. *Sigh* Motley Crue, Poison, Bon Jovi, Guns-n-Roses, Warrant, Skid Row...I could go on and on.

6) In sixth grade I was the only girl in my class who could make herself belch. The boys could do it, sure. The girls? Nope. One day we were walking single file down to the gym and I was at the back of the line (I hated being tall but that is a totally different story) and I let one rip. This belch was really something since we were right at the junction of two hallways so it reverberated up and down in four different directions! The substitute teacher (of course) made everyone go back to the classroom and we were going to sit there until the guilty party confessed. I had to take responsibility in front of the whole class. Ugh! That sucked. All those people who were egging me on to do it in the first place get away free and clear and I end up in trouble. *sigh again* I can still make myself belch but don't do it very often.

Geez, will I be a total dork if I don't tag anyone else? I think everyone has done it already, right? OK, how about this. If you are reading this and haven't done one on your blog already consider yourself tagged. Leave a comment to let us know you are doing it and we will hop on over to your place for your answers.

Seriously, the hair bands. Am I the only one?

35 Weeks

2006-05-02T11:04:00.000-05:00

35 weeks gestation, Friday she will be 11 weeks old.

A time line:

3/30 - Started giving Azure fortifier in her milk to boost the calories she is getting.

4/5 - Azure is taken off all feedings and put back on IVs due to a bowel obstruction. Symptoms included gray/clay color stools, green bile, horrible apnea and bradycardia (episodes of not breathing and heart-rate dropping) and a highly uncomfortable baby. I ask and am told that it is highly unlikely that the bowel obstruction came as a result of the fortifier.

4/6 through 4/19 - Long slow recovery.

4/20 - Finally back on full feeds with straight breastmilk! Go Azure!

4/21 - Azure gets immunization shots so we expect her to be uncomfortable for a couple days.

4/22 - Started giving Azure fortifier again. Oxygen saturation levels low, needs to poop!

4/23 - "Low Stim" day, no holding, baby uncomfortable and struggling to poop!

4/25 - Green bile again, stools "clay" color again. They said she hadn't "declared herself" as having a problem yet. T said, "Well I am declaring for her!" She is switched to straight breastmilk and given a complete liver workup. Test results all come back normal. The only difference is the fortifier. They have yet to concede the fact that I was right all along about the fortifier.

4/29 - Stools coming around to normal color again, no alarms for apnea/brady episodes, mostly room air (requiring less oxygen). They talk about adding a fortifier back (different one this time) since she hasn't gained weight this week.

5/1 - They give Azure time sans cannula to practice breathing on her own. She does well as long as she is asleep but when she wakes up needs a bit of a boost. Things, in general, are good.

5/2 - Azure gains 45 grams! She is 3 pounds 5 ouces (1530g)!

Hmm. Looks like the parents were right! I trust their medical judgements and am so very appreciative of their life saving efforts. The problem comes in when they have people watching her that haven't been there in a week or "new" people who have never been assigned to her before and don't know her traits. They need to listen to the people who are there every day and know her very very well, us. I have also learned to write things down. What have they changed? When did they change it? How was she acting before compared to after the change?

In other news:

As a family we raised over $2400 for the March of Dimes Walk America last weekend! Yay! Most of that was my mom's doing but we got the word out and there were several nurses from our NICU walking too. Next year we will have more time to prepare and will hopefully be in a better place in our lives to be able to do more fundraising.

Expectations, Great and Otherwise

2006-04-22T21:15:00.000-05:00

I don't know what I expected from pregnancy. I never imagined I would have the opportunity. After so many cycles ending in that stick with the single line I was absolutely dumbstruck by seeing two. Knowing it had been the result of the IUI I still looked quizzically at that double line and asked, "How did that happen?" I didn't really believe it then, or when the nurse called with the news of a positive beta, or when the nurse called with the more than doubled beta. I still wasn't really convinced when I got the quad screen or when we rolled in for the 20 week ultrasound. We could visibly see her moving all over the place on the screen but I couldn't feel her moving so it mentally and emotionally felt like I was watching someone else's home movie. What I need you to understand is how totally surreal the entire pregnancy seems to me, not just now that it is over, but the entire time! I was JUST starting to get used to the fact that I was pregnant with my growing belly and increasingly swollen feet when it ended. I did not bond with the baby in my uterus. I was barely able to accept the fact that she was there in the first place. I thought about having a little girl in the summer and the thought pleased me but mentally and emotionally I did not connect those thoughts to what was happening inside my body.
My water broke at 11:30am. Azure was born at 11:50am. In those twenty minutes we were asked repeatedly if we wanted extraordinary measures taken in order to save her life. In my shock and muddled thinking I was rendered speechless. I could not give them an answer. I had questions to ask such as: At 24 weeks and 3 days can she make it? Will she suffer? Will she suffer later due to her development outside of the womb instead of inside? Will she be in pain? I needed to have a discussion with someone explaining things to me so that I could make the best possible decision for the welfare of the baby. I still did not think of her as my daughter. She wasn't real enough yet. The thing is, there was absolutely no time for that discussion to take place.
Seeing her in the isolette in the NICU she barely looked like a real baby. How do I know this is my child? I did not experience labor and childbirth and bring forth into this world a bouncing baby girl. I had a traumatic experience with pain and fear and a voiding of something from my body (I never even pushed) and then T and I were left in a room alone and I was no longer pregnant and we didn't have a baby and I couldn't wrap my head around what the FUCK just happened.
I had specifically not had any expectations about what the labor and birth should be like because I wanted to relax and go with the flow. If I had a plan and things went another way then I might have been disappointed and I did not want to look back at what could possibly be my only birth experience with regret. What I had hoped for was to deliver her, probably with the aid of an epidural, and within the first hour after birth I wanted to do kangaroo care. That is to say, place her skin to skin on my chest and let her know where my breasts were just to get her used to the idea that food could be found in that general area. As it turned out, I wasn't able to hold her until she was three weeks old and the kangaroo care came much later at almost five weeks.
Azure had her immunizations Friday. I didn't think she would even have enough muscle tissue yet in order to get the shots but they assured me that they use a very small needle. Saturday she was "naughty" which is nurse speak for "she hasn't been breathing well and hasn't been pooping and has had more residual milk in her belly and isn't doing so hot right now". This was one of those days when I was not allowed to hold her, too much stimulation.
I look at that little girl, sleeping in her bed and I now realize she is my daughter. She has my nose and she is blonde like me. Those things however do not make her my daughter. She is my daughter because I am there for her. I care for her. I love her and I am making decisions for her. Are they in her best interest? I hope so. I assume so. The biggest decision was already made. We decided to have them save her life.
I feel that all these things have been one big selfish act on my part. I wanted a baby. I wanted to try medical assistance to get pregnant before moving on to adoption and when things came to a head I held my tongue and kept my questions to myself and was grateful that my husband told the medical staff to do what they had to do to keep the baby alive. Yes Rach, I too find it amazing that should I still be pregnant right now I would be able to make the decision (CHOICE) to either continue or discontinue my daughter's life. I wonder if she would have been better off if we had just let her go. She wouldn't be struggling to do basic things right now like digesting, breathing, keeping her heart from stopping. Simple things like the sound of my voice, the light overhead, the gentle rocking of the chair or the supposedly soothing touch of my hand can be overwhelming to her. We are her parents and we had the CHOICE to let her live or die. I can't say for sure whether we made the right decision or not but I am glad we had the right to choose one way or the other. According to Tertia's post the other day babies in South Africa born below 2.2 pounds are not given oxygen support from ventilators. Azure would have died in that situation and it would not have been our choice, the choice would have been made for us.
I sat in the nursery at home Saturday night to pump. I looked around at the bookcase filled with toys, books and videos, at the changing table covered with clothes, diapers and skin care products and at the swing which is all set up holding a teddy bear no bigger than the girl who should be sitting there instead. I looked at that empty room and I felt sad that things didn't turn out the way they were supposed to. They weren't supposed to be this way. There I was pumping my breasts which would not have been possible had I not had a baby and yet, there was no baby. I was holding plastic bottles instead of cuddling my newborn. I do not yet feel like a mother and I do not think that I will feel like a mother until I get Azure home with me and I am the one responsible for her care. I will not feel like a mother until I no longer have to ask permission to hold her (Saturday and Sunday permission was denied), to bathe her, to change her diaper or give her medicines that she needs.
I did not have any expectations about what motherhood would be like, but I never expected it to be like this.

Full House!

2006-04-18T05:05:00.001-05:00

2 months old !

3 pounds !

She is working her way back up on the feedings which means the IV nutrition is being turned down. I am looking forward to getting rid of the IV...again, as this will mean she can wear some of the preemie clothes we have been given. (With the IV in she needs clothes that velcro around her arms since you can't just pull them through the sleeves.)

Azure is 33 weeks gestation today. Her new neighbor in the bed next door was born Sunday night at 31 weeks. She weighed in at 4 pounds 9.7 ounces. It just seems incredible the difference time in the womb makes.

Gotta go, nature calls. In this case, that means my boobs are full and letting me know it is past time to pump. Don't sneeze or get a chill because your nipples will zing like they are hooked up to Consumer's Power! (Yeast infection seems MUCH better by the way.)

Navy Blue Elephant Trunks

World Prematurity Day//Bloggers Unite

And They Lived Happily Ever After...

Careful What You Wish For

Happy Birthday Sweet Girl

Dr. Google Follow Up...

Dear Dr. Google,

The Girl Who Lived

Bad Hair Day

"Traumatic Birth"

WAM 300: 2010

We've Come a LOOOOOONG Way Baby!

The roof, the roof, the roof...is a work in progress.

Big Kid Underpants !!! *Cringe*

We have PIG TAILS!!!!

All Kinds of Karma on the 12th

Because We Don't Do Normal

Santa-cycling

Art Prize 2010 look out!

Aaaaaand Here We Are

Vampires Strike Close to Home

Azure Update January 2009

Unbalanced

A Bit of Whining

Stumped

Yeah, So...

Then Things Went Wrong.

The Time Has Come...

After Falling Off the Face of the Earth...Again

Whump!

How Blue Got Her Groove Back

This Week

Deep Thoughts by Blue Trunks

Out of Nowhere

The Girl is Growing Up

What Cecily Said

One Lump or Two?

Ghack

Grounded

WHEEEeeeeeeeeeeeeeeeee

Visitors Messing Up My Day

We Made Some Serious Lemonaid

Be Careful What You Wish For...

The One That Got Away

Hold On, Let's Back Up a Minute

Ramdom Stuff

Cervix Insufficiency

So Many Topics, So Little Time

Back to Work

Today

Annie, Annie, Are you Ok?*

Hi-Diddle-Dee-Dee

Hey You!

Warning

Things are crazy busy 'round here!

Pandora Says What?

We Have Fun At Home

I'm Dreaming of a whiiiiite Halloween!

Note to Self

Not Just For Candles Anymore

Fun For All Ages!

Yeah Baby, Yeah!

ARE WE DOODLE-WORTHY?

Positives and Negatives

Jeff Foxworthy once said, "I like to shake my daughter up and then hand her to people I don't like!"

I Love Mondays

"I'll think about it tomorrow."

Visual Aids

A Few Things

Daddy Time

How Are We?

Good Question

A.W.O.L.

I Chickened Out

To Continue the Struggle of Pumping or Throw in the Dried Up Wrinkled Prune of a Towel

The Moment

de ja vue

Interview

Checking In

I am still here

Big Kid Underpants !!! Cringe