04 August 2008

An Update You Deserve

Due to a lack of time and obvious family obligations, I feel that I’ve left a few family members, friends and the entire blogosphere (ok, that’s an exaggeration) out of the loop. Conner is easy to make quick posts about. He’s always into something new, saying something hilarious or posing for an insane photo-op. Chase is a whole different person, and although just as entertaining, rarely gets his rightly space on here.

I’m going to start with a few FAQs (frequently asked questions) ((don’t you hate it when people abbreviate and then spell out the abbreviation? Like how Rachel Ray always says “E.V.O.O.” but then turns right around and says “extra virgin olive oil”, I mean come on. Pick one! I digress)). Chase’s 6-month neurology follow-up was last Friday at Children’s in Birmingham. Here are the answers to most of your questions.

1. (The most common question) “So, what happened?”
A: We don’t know. Chase had the most severe bleed possible on his brain. He was full-term. That’s important to know because preemies are at risk for bleeds due to malformations or underdevelopment leading to excessive bleeding.
There was also no blunt trauma (a car accident, or Michael beating my stomach with a 2x4). Important to note because blunt trauma to my stomach while Chase was in utero could cause a bleed. One of this magnitude though? Not likely.

2, “Why was he in the NICU at Children’s and what did they do?”
Chase seized shortly after birth (see this post for the backstory). He was flown via medivac to Children’s in Birmingham. He needed an upper level NICU and Montgomery simply doesn’t have that.
While there, we were advised to have Chase’s ventricles (basically, his brains) looked at via angiogram. This would tell us the source of the bleed, if any. The only problems that could cause a full term baby to have a grade IV bleed are:
1) Malformations
2) Aneurism
3) Embolism
4) Clot
It was a very serious procedure causing him to be intubated, anesthetized and injected with dye.

Chase had none of the four causes.

3. “Then, why?”
It’s a freak thing. By the end of out stay in the NICU we had at least 4 doctors and 10 residents standing over Chase scratching their heads and wanting their paws in his medical file. He is truly 1 in several million. Go ahead… Google “full term baby with grade IV bleed on brain” and see what you get…. Nothing.
We were told he probably wouldn’t absorb the blood and would need a shunt to drain excess cerebral fluid (hydrocephalus) and we were to wait.

4. “He’s fine now though, right?”
Yes. And no. But mostly yes.
For the first 3 months, Chase always cried. Always. Always, always… yes, always.
He had a severe headache from the extra pressure. He stayed on Phenobarbital (seizure prevention) for a while too, which made him act strange and his tummy upset.
But now, after this last 6-month neurology check-up, Chase’s soft spot is as it is supposed to be which indicates that his body has thus far absorbed a great amount of blood. His neurologist is stunned. He kept telling us (we counted at least 4 times) “He’s really dogged a bullet.” And, he has.

5. “What about developmentally? Damage?”
As of now, Chase’s neurological and physical development is not only on track but also slightly ahead. He’s been “talking” for well over 2 months now. He can say “Mama”, “Dada”, “Bababababa…” can make several simple and complex sounds and other ramblings. He reacts to his name. He laughs all the time. He can grasp objects and exchange them in his hands. He can roll over back to front and front to back. He is starting to scoot a bit on his tummy. He can stand assisted.

We won’t know the full extent of any damage until he is well into his childhood years. But for now, he is perfect.

6. “So, you are basically out of the woods?”
Not quite, but we wish! Our neurology appointments are down to every 6 months. The risk of developing hydrocephalus is very small now, and get smaller as he progresses towards his 2nd birthday. After that, we will probably only visit a neurologist once a year until he is 4 or 5. We are not seeing a developmental specialist because Chase is doing (abnormally) well. (Thank you Lord.)

I hope this clears some things up. I hope to post a series the week of Chase’s first birthday as a “look back” day-by-day to help me document what we went through so I can both appreciate what I have now and be reminded of how far we’ve come.

Oh, and if you have anymore questions (whether you’re someone I know, or you just managed to stumble upon this blog looking for info about a similar experience), I’m an open book.

2 comments:

  1. Thanks for the update! Sorry I don't comment much but I promise I'm still reading :-)

    ReplyDelete
  2. Praise God, Amanda. That is amazing.

    ReplyDelete

Comments! I LOVE Comments!

I Blog For...

BirminghamMommy