I want to believe he is fine and nothing at all is wrong. He is still alive, which is amazing given his start. He has done well weaning off medicines, gaining weight, having bowel movements, and seems like everything else...except eating. Edmund still only gets small amounts (15 ccs) in a bottle. He can usually take that but spits up a little or has trouble making a seal...or coughs. He has only gotten to practice twice a day with a bottle - everything else comes through the tube in his nose. He needs to get up to like 60ccs (I think thats like two ounces) with a bottle before we can begin to think about coming home. He needs to consistently take the 15 ccs so we can do a swallow study. It is all somewhat confusing.
So who knows how much longer we will be here. The frustrating thing is this is were insurance and policy start to take over. They have to follow this pattern to keep insurance happy and to cover malpractice issues. If he isn't able to get to where ever he needs to get then there is some tube they are going to put directly into his stomach so we can feed him that way. The doctor told us tonight that they need to make sure that his brain can tell his airway to be blocked when he is feeding. She said that just because there isn't any damage doesn't mean everything is functioning correctly.
So we have a long road. We are getting tired. This morning we slept in until 7:45 (I am supposed to be at work at 8) Thank God I have a great and forgiving boss! I realized today that our house hasn't been vacuumed in almost a month. (ew) At this point it might just be worth it to have the carpets cleaned. We have like no groceries either. I never thought I would get here, but I'm almost to the point where I never want to eat out again.
We just want to take him home and start being a family there. It is hard to be patient - but at least we are fortunate enough to have a situation where we need to be patient! It is just hard to remember that - keep praying for us, please!