Thursday, January 10, 2008

Update...more prayers, please...

Well, Makayla's home with us!! Our first night wasn't bad - she pretty much slept the entire night, although she wakes up to eat every 2 hours, of course. Which wouldn't be so bad if I didn't still have to pump for Mackenzie as well...I'd basically get about 45 minutes - 1 hour of sleep during each 2-hour cycle. Man, am I tired today! Tonight, she's not really wanting to sleep soundly - keeps fussing in her sleep. She was starting to get kind of loud, even though she's not fully awake, and Anthony was starting to stir, so I brought Makayla out to the living room to avoid waking him. She's dreaming right now and keeps smiling and sort of chuckling in her sleep - SOOOOO cute! She must be having milk dreams!

I got a call from the neonatologist at the hospital this evening. They received Makayla's Newborn Screening results, and she tested positive for a disease called Congenital Adrenal Hyperplasia. It's a genetic disorder affecting the adrenal glands, wherein they don't produce enough of two different hormones that help the body handle stress (illness, injury, etc). I've just read a very little bit about it. There's no cure for it, but it is treated with life-long hormones/steroids that have to be given 2-3 x/day. Anyway, she doesn't for sure have it - the doctor said there are quite a few false positives - but I have to take her back to the hospital tomorrow for more lab work to determine if, in fact, she does have it. Please pray that this was just a false positive and that she will not have to deal with this for her entire life!

And while we're at it, let's add in some prayers that Mackenzie's newborn screening comes back totally negative for everything!!! They don't have her results in yet.

I didn't see Mackenzie today - both b/c of having Makayla home and b/c I seem to be getting a cold. I talked to her nurse this evening, and she has gained weight (albeit very little) the last 3 days. They are still limiting her nipple-time to 15 minutes per feeding, and today she was only able to finish one of her feedings in that time. The other feedings she didn't do so well and a good portion of the milk had to be given through her tube. She continues to be very "active," and pulled out her feeding tube last night when I was there, and again today.

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