Eric trying to entertain a fussy baby, checkout that frown :-(
So now Caleigh is up to 3ml an hour of Neocate formula + Pectin. She was very, very fussy the past couple of days but I think she is starting to feel better. For the last week she was just cat-napping here and there and never really sleeping more than 20 minutes. Last night she slept for a full 4 hours without a peep.
One of our docs ordered Maalox paste to be put around Caleigh's G-button. It is supposed to neutralize the stomach acid that is oozing out of her button area. We are still on the steroid cream to help the skin around it as well. Caleigh is getting all of her extra meds through her g-button now, which makes it easier when timing things. There for a couple of days we were messing with her every 30 min to an hour just giving her meds, cleaning her button, changing her diaper..... No wonder the girl can't sleep she thinks something will happen to her. So now she gets all her meds at 8 am & 8 pm.
Lets talk poopie people........ The pectin and new formula seems to be really working on slowing things down and giving her stool substance. It doesn't even soak into the diaper now! Whaooo!
The GI doctor told us that Caleigh would be on continuous feeds for a long time because she thinks of it this way: When you have a down pour of rain, which is the equivalent of eating every 3 hrs by bottle, there is a lot of run off and the rain doesn't soak into the ground. So when there is a slow steady rain, which is like continuous feeds, all the rain slowly soaks into to the ground. Caleigh is considered to have short bowel syndrome and her amazingly fast intestinal tract wouldn't soak up the nutrients she needs if we did the typical bottle feedings. So when Caleigh does get to go home she will be on continuous feeds.
I've had a lot of people ask about a previous post where I stated that Caleigh would be going home on the TPN and that is why we had started doing her dressing changes. I apologize if that was misleading, Caleigh still has a long time before she can go home, probably months still. We need to get her up to at least half feeds of formula before they would consider it. As long as her belly is blowing up and becoming distended every other week there is no way we are ready. At the pace we are going now, upping her feeds by 1 ml every other day, we still have at least 2-3 months left before we are half way with our feeds and even then she would be on the TPN. Saddening, we know, but were positive we will have Caleigh home before her 1st birthday.