Well it's been one week since he has been home. It's wonderful. I don't miss the trips to Milwaukee at all. Sara still has to make the trips for his follow up appointments, but that's every other week.
I thought I was going to have it easy by letting Sara stay home with Jack and me working. I was wrong. There is so much that needs to be done each day with him...more than a normal baby.
He gets fed every 3 hours with his tube feeding. At night he is fed continuously at a lower rate. He is sleeping well during the night which gives Sara a little break.
8 in the morning and 8 at night are the crazy times. He gets a breathing treatment, shot in his thigh, feeding and all his meds at those times.
Then of course you have the diaper changes and cuddle time.
We try to get him out of his crib as much as he tolerates it. He cries pretty decent, not a normal baby cry but you can still here it over his monitor which we were kind of concerned about.
Molly has been absolutely wonderful. She is a great big sister and helps when we need it. She has not shown any signs of jealousy, don't know if that will stay that way or not.
Sara makes her first trip to Milwaukee tomorrow for a follow up. My mom is going with her to help.
I'll try to keep everyone updated on a regular basis.
Jackson is great though and you all helped tremendously to get us through it.