Low tone and feeding issues

junebug1027

Hi everyone, I introduced myself a couple months back. My daughter has agenesis of the corpus callosum, a porencephalic cyst, chiari network in her heart, and a hole between the right and left atrium. She also has low overall muscle tone but is starting to hold her head up and strengthen in other ways.

She was born March 31 of this year (full term and 11 lbs!!) and has been in the NICU since 12 hrs after her birth. She has been on a ventilator, cpap, cannula and now finally room air. She's had a feeding tube the whole time. The only thing keeping her here is that she cannot consistently drink a full bottle. There are times she doesn't even wake up to eat so they just tube feed her. I'm not sure if the brain issues, heart issues or low tone is causing this. Speech therapy has seen her as well.

I'm not even sure what I'm trying to ask. Anyone with any experience with a similar situation? I don't know what else to try or suggest and I don't want her to go home with a surgical feeding tube if its not necessary. I'm so anxious to get her home and start to figure out what this new life is going to look like.

Assembly_Reqd

Nate has Hypoplasia of the Corpus Callosum and we had similar issue regarding feeding in NICU.

He was on room air and was originally brought  into NICU for poor apgars and dismorphic facial features. His only other known issue at the time was a large PDA. He would fall asleep eating as well, but he also had really low tone around his face and his suck was awful. The only thing keeping us there was the damn feeding. (we were there for 17 days) We gave up on breast feeding and made a point to be there for every bottle feeding except the night time ones. It became clear to us they would never let us go if we didn't get the feeding to work. He was on a 4 hour schedule and we live only 20 min from the hospital so it was doable. 

We would wake him to feed and feed him sitting up in our lap to help him stay awake. We also would squeeze his cheeks around the bottle to allow him a better seal. We would unswaddle him and touch a wet washcloth to his forehead or cheeks to keep him awake. Feeding was such an exhausting task for him. We had to do whatever it took for him to focus and not snuggle back to sleep. 

There were a lot of needer babies in the NICU. If we weren't actively there, I am sure the nurses would have let him sleep and just turn on the gavage. They finally let us go 3 days before Christmas because we proved to them we could get him to eat. Good Luck!