Live, Learn, Teach, Prevent

On this day when. we recognize premature birth around the world I cannot help to count our blessings. 

We started out in a panic, I thought we would lose the baby, Tim thought he was losing us both. We made it through, not at all unscathed. 

Then came the phone call wherein I had to tell my husband that he needed to come down to the hospital because our two-year-old had cancer and they had checked us into a room straight from the ultrasound when they found the grapefruit sized tumor in her liver. This, it turned out, was most likely caused by the nutritional supplements given in the NICU. We wondered which side of Karma we were on. Double wammy bad stuff but we again made it through. 

There are other lingering preemie-related issues we are still dealing with. Spastic Diplegia, a form of Cerebral Palsy which requires Amanda to sleep in night splints that stretch her muscles. These are uncomfortable and leave red mark on her skin. They haven't improved her range of motion but we haven't lost any either which is good enough at this point. She has also undergone extensive testing, both psychological and neurological to determine she is living with ADHD-C (combined inattentive and hyperactive) and struggles with Executive Functions (organizing thoughts, prioritizing steps to complete tasks, etc.) she also suffers from sensory issues which interfere with dressing, sitting still, etc. That being said, she is SO smart and a good student. 

I am sure we are not yet finished discovering ways in which a premature birth will effect our daughter's life. Life will not be easy for her. Luckily, we know she is a fighter and resilient and somehow, continues to wind up with the best case scenario in bad situations. 

Not everyone is so lucky. 

Today is not about how bad we've had it (pretty bad, odds were against her coming home both from the NICU & from the cancer) but rather about pulling together to make it through the rough times and hopefully prevent these things from happening in the future. Within our pnuclear family this means Amanda will be an only child. This was not an easy decision or one made lightly. It meant changing my whole world view and long-term plans. On a global scale it means getting the word out about premature birth, signs & symptoms of preterm labor, maternal and fetal healthcare leading to PREVENTION. 

I was lucky enough tonight to kiss my seven-year-old at bedtime and tell her I love her all the time, even when he is angry at me (which she was at the time) and I am so grateful I was able to do that. I feel badly she will struggle in this life because she didn't cause any of this. None of it was her fault. We are finding in medical records that it wasn't my fault either. I had good insurance and good prenatal care, more than most considering the fertility treatments, but when I went into premature labor I did not recognize the warning signs. If I had, maybe we would have gotten to the hospital sooner, maybe they could have stopped my labor, or at least given her some steroids to develop her lungs before she was born. Can you say Maternal Guilt? (In my defense, the hospital didn't recognize it as labor either until my water broke.)

So, I leave you with this, the signs of preterm labor. Study them. Share them with anyone of childbearing age. Learn and teach so as to prevent. 

http://www.marchofdimes.com/pregnancy/signs-and-symptoms-of-preterm-labor-and-what-to-do.aspx

#PrematurityDay

Room for Improvement

Store bought green bean next to my home grown organic cucumber. Looking at the positive side, I have a huge opportunity to learn new things! :-/

Stay the Course

Last summer Amanda was seen for the Spastic Diplegia Cerebral Palsy in her ankles. She has always had less than normal range of motion in her ankles. The low side of "normal" means that when your leg is straight, you can point your toes back towards your nose (at the ankle, not the toe joints) and the angle of your ankle would be around 15-degrees. Amanda has always ranged in the 5-10 range. We have done stretches, we have taken her to physical therapy where they worked with her over and over to walk on flat feet instead of up on her toes. The toe walking will not require medical intervention until/unless she were no longer able to put her heels all the way down on the floor. This is not the case, she can walk with "flat feet" when reminded. The school PT told us to give her verbal prompts in order to accomplish this (nag her) and we decided this was not going to happen. The kid hears enough nagging without being criticized for how she walks...all.the.time.
Our concern has been, as she grows taller the muscles and tendons could get tighter and the range of motion in her ankles could get worse. This could lead to walking problems, knee, hip or back problems in her future could be avoided now if we stay on top of things.  So, last summer we started using splints on her as she slept at night. It took months to get them properly fitted trying this material and then that then changing again to get the right fit so the pressure wasn't too much on the top of her foot (it created terrible red marks which lasted all day long) and they were very uncomfortable for her. We finally got the right fit and have steadily increased the tension on them to work our way up to a 4.5 out of 7. The doctor today said, that even after growing an inch and a half this past year she has not gotten any worse, though no better, in her range of motion. He said if she HAD gotten worse (tighter) he would recommend serial casting, literally a series of casts on her legs pointing her toes higher and higher to the sky forcing the muscles in her calves to stretch. Sounds perfect for an active 7-year-old in the summer, huh? However, since she has grown and maintained her not normal but not horrible angle he is willing to stay the course and watch how she does with the expected growth spurt that occurs around age 7 or 8.
This is good news as we continue to make payments on the thankfully not useless splints we dutifully strap on each night and take off each morning. Also, they still fit her after this year of growth so we won't have to buy new ones to stay the course. *Whew!*

"On Writing"

Thinking about things that I enjoy and things that seem to come easily for me and things that would make me happy,  I kept coming up with the same thing...writing. I am an Ok writer, not great. I aspire to be a Mary Roach or even a Julia (alittlepregnant.com). Classy, intelligent and funny ladies.  Hey, I said that's what I aspire to, I am certainly not there yet! My writing has a conversational tone which people seem to enjoy and I have been told I should write a book, but to be honest, I write for myself about things that concern me at the time. For years I have said that I do not write when I am happy which shows that writing is a form of therapy, of processing, of cathartic expression. It is selfish and self-absorbed and yet, I do love feedback on what I have written. 

I miss blogging. I did it a lot when we were in the thick of infertility treatments and then going through the NICU. At the time I was blogging anonymously which gave me the freedom to say whatever I wanted as long as I didn't let the cat out of the bag about who I was or who might have been involved in a particular situation. Then I had to learn about a different type of blogging during Amanda's cancer treatments. I was factual and tried SO HARD to keep it all sounding upbeat, even when we were struggling SO HARD to keep putting one foot in front of the other. That blog was not anonymous so I felt very exposed. I know that I didn't share as much raw emotion just for that reason. I was facing enough (drama/trauma) without the fear of someone possibly criticizing something I may have said or done as a parent/employee/writer.  I was too vulnerable at the time. 

Then, as a way to support World Prematurity Awareness Day with Blog for Preemies, I went public with my original blog (after going through it post by post and editing anything that may implicate anyone else poorly in a public manner which seemed more innocent in the light of a pseudonym). I was told I was brave for "coming out of the closet" in that way. 

Then too, with the increased popularity of Facebook and Twitter I actually started thinking in shorter form prose. How can I express (share) this idea/situation/event in as few words as possible? While it did wonders for my word economy, it lead me away from the writing and I have come to realize...I miss it. I like the feel of writing, I like the typing as my thoughts flow straight through my fingers and onto the screen. I miss re-reading what I just typed and thinking, "Yes, that sums it up very nicely". I miss the act of writing. So, maybe I should start writing again. Worst case scenario is that no one leaves me feedback. Best cast scenario is I get to clear my head. I think it will be good for me either way. 

*Since this is about writing and partly inspired by the interview I read this morning with Stephen King who is far and away my favorite author (so versatile), I shall steal the title of this post from his memoir  On Writing. SK writes 1500 words each morning, just like someone who would get up and run two miles every morning. Keep up the habit and good things are bound to happen. So, write on...

Found Myself in Pandora's Box

So we have been asked to participate in a medical study on Hepatoblastoma the tumor Amanda had in her liver. (I just LOVED writing that in the past tense.)

The majority of the questions were easy to answer, others I found myself at a loss. In the end I requested copies of our medical records from the Fertility God's office, my OB's office (more challenging since she retired and I moved to a regular old family medicine doc at a different office) and also the hospital where Amanda was born. This is the one I have been avoiding for...oh, about 7 years now.

I have been wanting to ask, wanting to read, wanting questions answered and yet, I don't really want to know the answers. At first it was "What the FUCK happened?!?!?!?!?!?!?!!!!!!!!" and I thought as long as I had that attitude I might be perceived as just bit too litigious for their liking, which of course lead me to conspiracy theories of the medical records people editing out anything they thought I might not like.

After that I needed to get past my own fears that the records would reveal that the preterm labor/birth were caused by something that I did wrong. No one on earth can out-guilt my own thoughts that I did this to my child. I wanted a baby so badly I took any drug they suggested might help me do that. I continued seeing my OB even after I felt she disregarded my thoughts and concerns because she was a family friend from way back. I had to keep working while Amanda was in the NICU so I didn't spend every waking hour at her bedside (which wouldn't have helped her in any way but at least I could say I was there.) I misunderstood her pediatrician regarding the "fullness" (lump) in her abdomen allowing the tumor to grow to the size of a large grapefruit before we revisited it and discovered it was actually lethal. Do I have guilt? Oh boy, do I have guilt. What if the cancer turned out to be related to one of the treatments she received in the NICU, or possibly the fertility drugs I'd taken to conceive her in the first place?

Hepatoblastoma is a rare form of cancer in children but it is more prevalent in preemies. They do not know yet whether it is related to low birth weight, immature liver cells, treatments received in the NICU or something else. That is what this study is looking into. But, a superficial look at things would suggest that the number of infertility treatments has increased in that time and the number of preemies has increased with the increase in fertility treatments which would then lead to more cancers related to those early births. The number of Hepatoblastoma cases has DOUBLED in the last twenty years. Thank goodness they seem to have figured out a good treatment program for it, but still, who would to go through that if they didn't need to?   Amanda was diagnosed at STAGE IV due to the advanced state of the tumor, her age and the fact that it had already metastasized in her lungs. I still believe her doctors were shocked at how well she responded to the treatments. It helps when your kid is a rock star like mine!  If they can look back at her records and find a common factor with the other kids in the study maybe they can pinpoint a cause which may then lead them to a preventative measure in the future.

 So, with all this for the greater good of all mankind prompting me to finally ask the questions and see the answers...I still don't really want to know. I'll look and try to put my self-judgement aside but seriously, not looking forward to getting those reports in the mail. Mostly because, in essence, I DID do this. I'll just have to suck it up and take responsibility for my part. :-P

World Prematurity Day//Bloggers Unite

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...

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