July 27
They have given us our home date! This Wednesday! Woo hoo! It did not come without a little bit of drama, of course!
We were moved to the discharge unit about 10 days ago to work on feeding, growing, and weening off his respiratory support. Last Monday they took him off all oxygen and he did pretty good for about 3 days and then Thursday night he really started to struggle. Basically, they see this happen with kiddos who have had such bad lung issues. He does not have a lot of reserve so if he gets really tired then his breathing is the first thing to go.
It was very disappointing. It felt like a huge setback but as we do we looked at the brighter side of things. The doctor on Friday said that he will go home on oxygen and need it for a few months which is a good thing to prepare for and feels better because we will not push him to be 100% better by the time he comes home. He can heal slowly in the comfort of our home.
He is also not completely eating on his own yet. In the last 24hours he has started to take full feeds by bottle and 50% of his feed from breast but this could take another week or two to get fully going so they will send us home on an ng tube until he has mastered feeding and growing! Hopefully in next two weeks.
He is up to 4lbs and 11oz!!! He is 3.5x bigger than his birth weight. Hard to believe.
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