Because you can't jinx a baby heart, I can say that today was another great day!
Phil went to Ann Arbor first thing this morning and got to witness how great Caleb looks firsthand. He has been there for all of the monotonous times and has not yet got to experience serious forward progress. Today was his day. He said that he felt guilty telling me, but he is finding it exciting.
Caleb is still doing wonderful without the forced air. It has been over 36 hours now and he is showing no signs of increased breathing effort.
A room was available on the floor, so the boys moved out of the PCTU. The room he is in is a private room that they use for isolation when kids have some kind of contagious condition. It is a lot nicer than the standard room where two kids are jammed into a tiny space. They will get kicked out if someone needs the isolation room, but for now, they are staying in style. Because Caleb has been there so long, we have made friends with a lot of the parents and nurses, so the boys have been entertaining lots of visitors in their new pad.
Caleb seems to be tolerating the increased calorie breastmilk. They are going to increase from 22 calorie to 24 calorie milk tonight. As I have mentioned before, they fortify the breastmilk with formula to make it richer. Heart babies normally have a difficult time gaining weight because they are working so hard maintaining normal body functions.
Phil worked on Caleb's feeding homework this morning. Caleb can try a 5 cc bottle twice a day to work on his feeding skills. Caleb sucked on the nipple, gagged and then went back and finished the bottle. The fact that he can suck, swallow and breathe is absolutely huge. I was ecstatic!
The following are the things that we still need to do before Caleb can come home:
- Optimize his diuretic doses
- Switch the last diuretic from IV to oral
- Optimize his blood pressure medicine
- Switch to 24 calorie breastmilk
- Switch from continuous feeding to feeding once every three hours
- Determine what needs to be done to work around the blood clot
Phil asked the nurse practioner what kind of time frame we are looking at for coming home. She said that if things go well, we should be in Ann Arbor for another week or so. We are figuring on two weeks to hopefully avoid disappointment. We are just excited to be considering going home!
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Glad to hear that "goldilocks" has finally found his porridge "just right"! YEAH
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