Thursday, August 5, 2010

Lazy Bones

I am home for the first time in 13 days. The older boys seem to be enjoying it. Evan has been laying on the couch all morning - an unusual occurrence. They have been so busy these 2 weeks. Evan started piano lessons on Tuesday and even though he said "that doesn't sound like much fun", he did in fact enjoy it. The boys went to pick carrots and potatoes at Deb's house (when in reference to piano lessons, sounded way more fun to Evan).

Calvin is still in the NICU but hopefully not for long. Cal had his swallow study on Tuesday morning. I realized on the way to Radiology that I was not sure if I wanted him to be aspirating or not. If so, we'd have an answer, but if not, we wouldn't have to mess with a solution. Well, he aspirated the thin liquids right away. This explains why he wasn't eating, it was a miserable experience for him. When we aspirate, we choke, turn red, cry, and leave the room to cough our heads off. Babies who aspirate a lot do so silently. The SLP then tried Simply Thick, a gel that can be added to breast milk. Here's where the worst news of the week is: he aspirated this as well. He didn't quite as quickly and did just slightly, but it's not safe. Then the SLP tried rice cereal and he did fine with that. So, the verdict is: no breast milk for now. I was crushed. I didn't even want to post the results until today. It was like the diagnosis of Ds and CAVC all over again. Disappointment after disappointment. My baby won't nurse and cannot have what I'm pumping. It's very unfortunate because he needs all the medical help he can get, and formula is not as helpful for him. BUT, I am getting to where I am accepting it, only because I have to. When I mixed up a bottle yesterday, I wanted to throw it and refuse to do it, I was soooo angry.

The swallow study will be repeated in 4-6 weeks and many people on staff at that hospital reassured me that he should at least be able to graduate to Simply Thick by then. I am pumping and freezing in the meantime. The good news of this is that he is bottling pretty successfully as long as he doesn't tire out. He does not seem to have much more energy than what it takes to eat. Once he bottles 100% for 24-48 hours, we'll be home. I hope that is soon, but again I have pushed my sights out another week.

The ECG (echocardiogram) showed the PDA closed and that his heart looks as "good" as it did when he was a day old - positive news there. Other than that, I don't think there is much else to report. Hopefully the next time I post we will be ready to come home. I sure am sick of all this and more than ready to introduce Evan and Nolan to their baby brother. He sure is sweet.
Aunt Doopie ("Pee Pee" as Nolan calls her) visited last week!
Finally, some eyes wide open!
Funny faces!

4 comments:

  1. Okay, that sounds wrong, I am home ALL DAY for the first time in 13 days! Oops, I have been home every evening.

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  2. He really is a beautiful boy isn't he? I love the pictures you post of him! I'm praying for your acceptance on the verdict of what he can eat.... I'll also be praying that this will change in the upcoming weeks and all your hard work of pumping will be appreciated by little Calvin! :)

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  3. Aw, thanks Susie! I think so too, double chins and all.

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  4. Such cute funny face pictures! :)

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