Saturday, June 4, 2011

A G-D!

Today Grace had a GD, or a good day, but we aren't telling her that! It's funny how even the smartest most practical people are scared to jinx anything. That's NICU talk for you:) We also talked about when she goes to "the zoo" today. Not that we are close to going to the Zoo but it was nice that we talked about it in the context of WHEN it does happen instead of IF it happens. (If you aren't picking up, the zoo is home, or the h word!)
It was decided that even though Grace completely freaked out last time she was held, that she is doing well enough now that even if she cries or wiggles or anything that she just has to get through it because ultimately holding her is good for her. We want her comforted by our arms and even though it might be hard at first because she is just not used to it, we have to remember that its not that she doesn't like us, it's just that her whole life she's been laying in a bed so it might feel weird to her. And now she's not at a point where it can hurt her, she can get upset without losing her lung volumes and desatting (she still desats but not like she used to) and we just have to let her work on it. So I held her for about 3 hours and would have held her longer, but I had to go home! She was a little angry about the transition, but she calmed down quickly without the help of drugs! She stayed happy the whole time, mostly asleep. She did vomit a few times, which made her pretty upset, she really doesn't like throwing up.
They have started very slowly going down on her drips, it will take awhile to get her weaned but she is doiong good so far! It will likely take at least a month to wean the drips completely because her doses are so high, but so glad we are there! Her feeds are continuing to go up, tomorrow morning she will be on double digits! I love knowing she is getting breastmilk and her TPN is weaning!
Grace does have a small pnuemonia, but she is on antibiotics and they aren't really concerned, it is sometthing they expect. Her nurse said tonight that she's surprised she hasn't had it before now.
Grace got her chest tube removed yesterday as well as her replogle, how cute her nose looks without a hose in it!
The amount of breaths the vent delivers per minute has been decreased and she hasn't seemed to notice! Her blood gasses have been awesome!
She is doing wonderfully right now, and I am so so happy! I knew we'd get here, it just at times seemed so so so far away.
God is amazing to our family and I am so thankful for all who are praying for our sweet girl. Let's pray that these GD's keep on coming and that we take our trip to the zoo sooner than we are expecting!

3 comments:

  1. So glad to hear that Grace is on the upswing! See she is just a little princess who needed her own room! LOL Hopefully she has her own monkey cage at the zoo :D Praying for her to continue to have such amazing days!

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  2. Praying this morning that Grace will have a good day... The baby steps of progress are hard to see, but I can tell that they are happening. Thanks so much for the updates!
    Mary Ann
    Grandmother to CDH survivor Clara
    born 3.23.11

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  3. andrea timmonsJune 05, 2011 7:29 PM

    thats awesome to hear miranda! i cant wait to meet her!

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