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Friday, August 1, 2008

The rest of the story...

50,000 things I should be doing...and here I am at the computer. But, I need to finish the story so I can blog other things.
SO back to the baby story. Scott was hooked up to every monitor they owned, but he stayed in the nursery and never had to go to the NICU. His o2 sat rate was constantly watched. His heel was pricked every 3 hours to monitor his blood sugar and his bilirubin levels were also checked regularly. He never was jaundice enough to need lights, but as you can probably tell from the pictures, he was pretty yellow-ish. He couldn't digest his food, so he went form a tube in his stomach to an IV in his head. His poor body had soooo many holes in it! His heels were just purple, but he hardly whimpered as they stuck him. When he finally could "eat" and digest it, he got 5cc's per feeding. That's all. That's like one teaspoon of fluid, but any more than that and he couldn't handle it.

(In the hospital with the IV in his head. Can you see all his blond hair? He was the first baby they had seen to be born with a full head of BLOND hair. He actually needed a haircut to trim over his ears and his neck.)
Scott couldn't nurse. At first is was forbidden. Nursing burns more calories than bottle feeding, and they wanted him to gain weight quickly so we wanted him to keep all the calories he could. (Men can skip the rest of this paragraph.) I did pump for him, but until your milk comes in that doesn't really provide much in terms of volume. Finally, they allowed one nursing session a day, but we had challenges there too. I was now a double D and then some, and his head was like a C at best. His mouth was even smaller, and he just couldn't seem to latch on in a way that didn't cause me pain. Again, it did not go according to MY plan at all. So I tried nursing once a day, and pumped for him the rest of the time. Sadly, he never really "got" nursing. We almost had a good session once at the hospital, and I left strick instructions for them to use a dropper to feed him that night, but the night pediatrician (NOT our peditrician) came in and overruled that, and that seemed to have sealed our fate. I pumped for him for 3 months exclusively, and always tried to breastfeed too, but we never got to a point where I could nurse him without having to bite my finger as hard as I could to redirect my body's pain receptors. To say it was excruciating would be putting it mildly. Again, I know that that experience and the wisdom I gained AFTER that with the next three kids were all for a greater good, and I've been able to share from personal experience and help others to overcome the problems we had.
I remember great frustration at the hospital at the fact that Scott could not be in my room because of his issues. All around me were moms who were sending their new babies to the nursery so they could get a few hours of shut-eye, and I would have handed over the keys to my house if I could just have had my son with me for even a short time. I was so jealous. I wanted to tell them how lucky they were. How I would so welcome the "imposition" of having my baby keep me from sleeping. As it was, I didn't sleep for the first 36 hours. Everything with Scott was so unknown, and anytime I finally did crash from exhaustion, they would come and need to take my vitals or draw blood or something. I never dreamed that when he left my room after delivery that he would not be back in "my" possession until he finally went home.
Scott was born on a Wednesday. I was discharged on Friday. It was our fifth anniversary. My in-laws wanted to take us out to dinner to celebrate. Let me say, there is something terribly wrong with going in to the hospital pregnant, but walking out without a baby. I know I was fortunate, because for some women that is a permanent condition. For us it was temporary. But it still felt like I was leaving a piece of myself behind.
Because of the "rules" that governed Scott's care there were times I was not "allowed" to be with him. Night was one of those times. (He might not have been in the NICU, but he certainly wasn't a regular nursery baby either. Really, they kept him there because they could. They didn't have any other babies who were in there for keeps, so they could devote extra care to him.) SO what do you do when you live an hour away, you are discharged, but your baby is not? Well, that night my in-laws got us a hotel room. For the first time since I was a small child, I cried myself to sleep. It was terribly difficult to not be with Scott. The next night we spent at the Circle of Friends house. It's along the same lines as a Ronald McDonald house, but much more rudimentary. (I'm not sure how much we slept, and that day/night my milk came it and it was horribly painful without having a baby to nurse.) But we spent our days at the hospital anyway so the fact that our lodging was less than glamorous was not a big deal.
We got a huge surprise on Sunday. All our interventions had successfully kept Scott from losing much weight at all (the lowest he got was 3lb 15 oz.) and he had started to turn around by Sunday. Because he was essentially stabilized in other areas too, they felt that he could go home as long as we had a home health nurse come daily to check his weight, bilirubin, blood sugar, and do an assessment. We were ecstatic. We never expected that. You hear so often that babies must reach a certain weight (usually 5 lbs.) etc., but I'm forever thankful that they did not have that rule.

Here's Scott dressed and ready to head home. He looks like a little seriously tan doll, doesn't he?

When he came home, he was literally eating 5cc's at a time. We increased by 2 cc's each time and watched how he did.

See how big his hands are relative to his arms? It was crazy!

He was a projectile vomiter. I shed more than a few tears watching him puke up the "liquid gold" I had just pumped for him. He also got thrush and had to have nasty medicine that didn't work. In the wee hours of the morning on morning, I dropped the bottle and spilled most of the syrup-like $60 medicine on the floor. Yep, that was another tear jerker. That's how I became an expert on thrush and how to beat it.
In the end, he was back to his birth weight at one week and the home health nurse only had to come to the house for a week. At 6 weeks he was 8 lbs. 5oz. (a respectable newborn size, LOL). By 3 months, he was 12 lbs and actually had fat on his body and a double chin.

A little on IUGR: No one knows why it least not to "normal" people. It's far more common in smokers, drug users, and alcoholics, as well as in lower socio-economic sectors where they don't receive pre-natal care. But for people who don't fit that profile, there is no real cause. Essentially, IUGR babies an have all the issues a pre-mie can have and then some, since something caused them to not develop properly. There are two types; symmetrical and asymmetrical. Symmetrical is actually the worst. It means the body was uniformly denied nutrition and hence development. Symmetrical IUGR babies measure "behind" everywhere...head circumference, body circumference, bone length, etc. Asymmetrical babies have shifted the nutrition they receive so that a disproportionate amount goes to the brain and vital organs at the expense of the liver, muscles, and fat. In these babies the head circumference is usually about right, and the body seriously lags behind. For Scott, his head measured at 36 weeks and his body at 31. Asymmetrical babies do better in the long run because their brains and heart were not as deprived as symmetrical IUGR babies.
One website offers this information:
Neurologic development is also related to the degree of growth restriction and prematurity.23 Decreased intrauterine growth may possibly have a negative effect on brain growth and mental developmental potential.24 At baseline, children with a history of IUGR have been found to demonstrate attention and performance deficits.2
Basically, they have an increased risk of motor and neurological disabilities. In Scott, this has manifested itself in the form of Sensory Intergration Disorder (a disorder on the Autism spectrum...for more info see this website), and perhaps other things we don't have a name for (yet) but live out on a daily basis.
I love my son. He made me a mother. And I trust God totally and completely that His plans for both Scott and I are perfect. But not a single day with him is easy. He can be the best child in the world one minute and reduce me to tears the next (and not in a good way). His issues are complex and run very deep. How much is IUGR? We will never know. Lots of kids have sensory problems who weren't IUGR. But I definitely think there is a link in this case. And (here I go out on the conspiracy theory limb) I had a ton of dental work done while I was pregnant with him...including the removal of some amalgam fillings in teeth where more cavities had cropped up. Everything was done very carefully and following all the preventative protocols, but I really think there may have been a mercury induced reason for the IUGR and Scott's subsequent problems. I wouldn't trade a difficult day with him for another day of childlessness, but that doesn't make it easy and sometimes it gets the best of me. I think every parent wants the best for their child...wants them to be successful, intelligent, well liked for who they are. And it's incredibly painful when they aren't...and when sometimes you don't like them very much either. But I always LOVE him. And he definitely keeps me on my knees and humble before God :-).
Anyway, thanks for reading his story and sticking with it this long! I needed to get it all out before I lose the details. I'll probably do the other kids as their birthdays approach.

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Lisa said...

So I'm not the only one! Noah never "got" nursing either...and yes, I pumped for three months too. I never want to see a breast pump again! I did lots of crying over spilled milk too...:). Thank you for sharing Scott's is an amazing one. And you are an amazing Mamma.

chewhi said...

thanks for sticking through and writing it all out. It's an awesome story.

Julie said...

Thanks for writing this!

Randi Sue said...

Thanks for writing. I too can relate about not coming home with your baby and about the pain of having a child with sensory integration problems.

Your Children's Health Issues said...