Friday, January 18, 2008

Update on the girls

Sorry it's been so long since I's been a little busy around here!

Makayla's doing great here at home. She's up to 6 lbs even, as of yesterday, nursing like crazy. She loves her swing (sleeps there a lot) and loves to be held. And praise God, the second test for CAH (from the newborn screening) came back negative!!!!! Yay!! She has been having alarms for bradycardia (low heart rate) on her apnea monitor, mostly during and after feedings. And always at night, for some reason. Anyway, the neonatologist said he's not concerned, as it's normal for this to happen during feedings and because she's not turning blue when it happens. I'm still waiting to hear from the Kaiser neonatologist regarding setting up an appointment for Makayla for follow-up. He'll be the one monitoring her for apnea, bradycardia, Synagis shots, etc - all of the preemie issues.

We saw the geneticist yesterday, regarding getting the girls tested for Charcot-Marie-Tooth disease (the neuromuscular condition I have). Each child has a 50% chance of having it. The doc, however, does not want to test the girls at this point, b/c he feels children shouldn't be "labeled" unnecessarily, and basically said that if/when they develop symptoms, then they could be tested. Darrell sort of agreed with the doctor. I was frustrated with this, though I understand his reasoning - but I wonder if he has children of his own! He said we have enough on our plates right now and that we didn't need this to worry about too...does he think that just because we don't have a positive test, that I won't worry about it???? At least if we did the test, there would be a 50% chance I'd be relieved of this worry...whereas without the test, I'll continue to wonder and worry. Anyway, he did say we could do the test anytime, so if I'm still thinking about it and worrying about it in a couple months, after things have settled down, then we'll revisit the issue.

I went and fed Mackenzie today for her 11:30 feeding. She's doing much better with the breastfeeding now...a combination of having more energy, being more alert, and her growing - so her mouth is a bit bigger! She nursed for about 45 minutes. She's in an open bassinet now - graduated from the incubator. She's up to 3 lbs, 11.5 oz - YAY!! She's nippling every feed now, though they still sometimes have to gavage whatever she hasn't finished in 30 minutes. They are adding Human Milk Fortifier to her breastmilk, to help her gain weight. But we're getting closer to discharge!!! I'm guessing maybe another week to 10 days??? Oh, and her newborn screening came back completely fine!! I was upset last Friday, b/c when I went in, I was looking at her chart and discovered that on 1/1/08, they did a cranial ultrasound and found a Grade I brain bleed, and no one ever told us. However, I talked with the doctor a few days ago, and he said Grade I's are very subjective - what one doc says is a Gr I bleed, another doc might say is nothing. He said it's not associated with any long term problems at all, so I was relieved.

We had a nice surprise on Monday - Darrell's work group threw us a baby shower! We got a double stroller, baby bathtub and toys, and lots of adorable clothes...and diapers...always good. It was really nice to see everyone - I hadn't seen most of them in quite a while.


sarah smoker said...

SO glad you posted again...I was getting worried about you guys!! Also so glad to hear the girls are doing well.

Anonymous said...

Glad to hear the updates and that things are going well with the girls. How is your little guy adjusting to having baby sisters? I bet he's a big helper. Keep us up to date on the progress! Holly


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