We are back home tonight after another week in the hospital with Katlyn. And sadly--home with a sick baby and sick Mama.This is our last ditch effort to get her to gain without IV feeds and we will be taking it on a day by day basis. She is on the highest caloric density they can put her on and feel we are really pushing the envelope on volume as well.
Her swallow study showed that she has not lost the ability to swallow, but has a serious aversion to bottles and baby food. We will be working with a speech therapist to help her overcome these issues, but they feel it will probably be a slow process. Sweat chloride test came back negative, so no CF (cystic fibrosis)--yeah! EKG and Echo looked good except a possibility of an enlarged heart--but it could also be just a numbers issue given how tiny she is. We tried to do an indirect calorie something or other test (didn't that sound technical), but they determined they couldn't do it because it may not be accurate on someone so small.
So we sit around, still not knowing what is going on with her little body, and just praying that she'll fatten up on the new regimen. If not, it's back to the hospital for a PICC Line and we'd really like to try and avoid that.
We will be having a family fast for Katlyn on Sunday and would appreciate any and all who want to fast and pray on her behalf.
3 years ago