Allllmossssst there...

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

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

while I was hiding in the NICU but she did. 

AF is back. 

CD1

*sigh*

OMG Azure is F&G!

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

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?

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

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

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

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.

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

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

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

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.