Well, things they are a changin'.
We came in so excited about Jonah eating last night. And he tried again this morning, and had eaten 5 or 6 of 10 cc's. They've now increased the amount he should have. We were so pumped walking in to see him, and lo and behold if they're not, as we speak, putting in a TP tube. It will run from his nose, down his esophagus, through his stomach, and just to his intestine. The nurse just came in and said it's in place and he did really well.
I have mixed feelings about it. I know he needs nourishment and quick, but it was just a shock this morning since he had started eating more. But Dr. Furlong had talked with Dr. Fine, and he said it would be okay, that he had done it on EB babies, as long as it is a short-term solution. The positive is that Jonah will get the nourishment he needs, will be able to heal and resist infection better, and he can still bottle feed. If he starts really picking up with the bottle feeding, we'll be able to take the tube out. I just hope they've found a great, tape-free way to attach it where he can't pull it out.
They've ordered him a special pulse-ox to go on his forehead. This morning he's looking very much like Rambo with a soft strap around his forehead trying to hold on his current pulse-ox. It's not really working, but he looks totally adorable.
I'm going to go check on him right now, see how the tube looks, and try to bottle feed him again.
Please pray that all will be well with the tube, that Jonah will continue to eat more and more, and that they can take it out very soon. I'm sure if this tube doesn't work and he doesn't start eating more, we'll be looking at a tube that will go directly into his stomach. This would be a more invasive surgery.
Sorry to bum you guys out. I'm slightly bummed myself. I'll get some pictures when I go in there.