Who can believe it, but today little Ned came completely off ALL oxygen...praise God! So far, he has done extremely well with it and it so so nice to have one less tube/wire attached to his little body. He also had another day of no puking....it was wonderful. He actually had on the same outfit tonight as I put him in last night around 9pm. He has never worn one outfit for a full 24 hours. His laundry typically piles up faster than anyone else's in the family because he spits upon himself so often. He also did a really great job laying up on my shoulder today. We're working on this so he can learn to roll over on his belly. You can imagine a child that has had three surgeries on his torso area isn't really keen on "tummy time" so we're slowing forcing Ned to reconcile himself to it....I think it may be working. I tried to work with him on feeding today...still no real progress there. He doesn't seem to get that process yet, but we'll try again tomorrow.
All in all he had a great day. He was alert most of the day and was really talking. When I say talking, what I mean is that he makes duck-like sounds. It's not the typicaly cooing of a baby. Ned kinda quacks at you when he tries to talk. I'm not sure why that is? It may be the easiest sound to make since his diaphram is needed to make noise? I have no idea, but the nurses and I get a real kick out of imitating him. As expected, Ned isn't that entertained by the whole thing. I am now having to hold the child all day long- he is extremely spoiled. When I put him in his bouncy or bed to go pump or eat, he cries until I return. It's very sad, I know. I am also aware that this is going to make my life at home more difficult when we get there, but that is just the monster I have created by wanting to hold him every second since they have finally allowed me to do so. He'll eventually want to get down and explore in life....I'll just snuggle him until then.
We have rescheduled the MRI again for tomorrow. I'm not sure of the time yet, but please keep it in your prayers. I realized this week that I have much to be thankful for and we have been blessed beyond measure so I'm not in the same fearful place as I was last week. I really would like for the MRI results to come back normal though. They are trying a more high-powered drug on Ned tomorrow to attempt to get him zonked out for the test. Maybe that will do the trick. At any rate, I bet I'll be able to put him down to eat tomorrow....he'll never know I'm gone. I'm going to try to work with him on his feeds first thing in the morning because he'll be so out of it all afternoon, it will be impossible.
That's about it for today- what a great day! Please continue to pray for Ned's MRI and his feeding progress. Also, for those of you who keep check on the other CDH baby links, they have a lot going on. There are several babies who are needing surgeries and others who have some serious impending reflux issues. Please check them out and continue to pray for their families as well. They have all be really good to continue to pray for and follow-up with Ned and his progress. They have also been a wonderful source of support and informaiton for me throughout this whole journey.....as have all of you!
I love you all!
Betsy, Travis, Jack & Ned