John's breathing has been insanely good so far this week. His high-flow is at 1.5, and they're talking of weaning him down to 1 tomorrow. If he does well, they'll take him off high flow and put him on the low-flow. Once he weans down on that, he'll be done with oxygen. That may happen at the hospital, or they'll even send him home with oxygen if thats the only thing that's keeping him there.
He is now over 4 pounds, so they've been dressing and swadling him as they've weaned down the temp in his isolette. Today they moved him to a crib to test it out. He needs to keep his body temp up while still gaining weight or he'll have to wait and try it again in a few days. So far he's doing good. It was so strange to see him out in the open, swaddled up like a real baby. It was so hard to leave him today, I just wanted to take him with me!
As long as the breathing and open crib are working for him, we have one last hurdle before he can come home--learning to eat. Unfortunately I'm being told this is the hardest part since they leave everything up to the baby. We started Monday. Each day little John and I sit down with the occupational therapist during his 11 am feeding and she walks us through the training. So far it consists of getting him comfortably in position, and waiting for him to root. He needs to get used to putting something new in his mouth on his own terms, which can be hard because of the negative sensations he's had in his mouth from the medical procedures. We havent made a lot of progress so far. He tries it a few times before getting tired and falling asleep, then training is over. Today we didnt even get to try since he was too sleepy to show any interest at all. Now I need to see if I can be at the hospital for other feeding times to see if I can catch him wake, which will be really difficult because of the other kids' school schedules. *Sigh*
Basically this is the part where all the parents lose their sanity. He looks, sounds, and acts like a real baby so it's natural to want to take him home now. Spending several more weeks learning to eat at a snails pace is a common breaking point. I've done pretty well until now, so I think we can tough it out for another month or so, but I suppose we shall see!
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JO, Logan had a hard time with this too. He would root and root and just never latch. Unfortunately I got a breast infection and so he ended up going bottle which he took to like a fish to water. I guess the moral of the story is, he'll make it! Just keep it up, he is a little miracle and everything will work out according to plan, just maybe not your plan! On a completely side note, every time I read one of your blogs I think of the song "John Wayne" by Billy Idol. Keeping you in our prayers! Brandie and Wes
ReplyDeleteHe was doing great, sweetie the first day. It is a natural process, and yes be patient, even if you work with him all afternoon, patience is the name of the game. You are doing a good job, and he is too!! He is strong, so send some good energy to him. Love you babes, mama
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