Funny tongue?

We are still having very little luck feeding Wyatt. He took 15, 20 and 7 at various points during the day. Marie Waters stopped by today and brought Peg. Peg used to work in the Cranio-Facial clinic at Oakland Children's Hospital. Marie told us that when she had a lot of success with Wyatt he was only half awake. He was only opening one eye. The nurse, Sue, mentioned he seems to get easily overstimulated. She had me hold him in cradle position towards my chest to put him in a quiet alert state. He totally rooted and acted like he wanted to breast feed. That made me think he was really ready for the bottle, but not much happened. Peg tried to feed him. She mentioned that Wyatt's tongue was up and toward the back of his mouth. I had noticed his tongue was often up, but didn't think much of it. She also mentioed Pierre-Robin. Yes, PRS was mentioned again.

Anyway, I think maybe Amelia, the OT mentioned he kept his tongue up, but it didn't sound significant at the time. Now I am wondering why the doctor's never mentioned it to us before. Clearly, that could be causing a feeding problem. The tongue being positioned at the back of the mouth is a sign of PRS, but usually PRS children have issues with breathing (thier tongues fall towards the back of thier mouths). I am really beginning to wonder if Wyatt was diagnosed correctly.

During our evening visit, Wyatt seemed to gag and desat alot. At one point, he seemed to cry in pain. His breathing became labored and loud. The nurse thought that his tongue was towards the back of his throat. He seems to reposition his tongue a lot. What do you do about poor tongue positioning?

We still wonder about reflux. I am concerned Wyatt could associate eating with pain if we don't resolve this.

We ended up talking the attending pediatrician about Wyatt's episode and then kind of unloaded about all the other stuff I have been worried about. He really couldn't answer any questions, but apologized frequently for poor communication and said he would take ownership of setting up another family conference. He said it should be scheduled by the end of the week hopefully. I have already typed up a set of questions.

The EEG came back as normal, which isn't a surprise because I don't think anyone really thought that Wyatt was having seizures. Wyatt had a ton of goop on his head still when we came in. I should have cleaned him off! I didn't even think of it until we had left. What kind of a mom am I?

I am really glad that my parents are going to be here. I need to lean on my mom right now.