Wednesday, February 21st

Weight: 2 lbs 9.6 ounces (1180 g)

Andrew had a really rough day today. He had tons of spells, he was having them every 3-5 minutes while I was there. His oxygen is at 100% and his sats are in the 80's. He is not tolerating much of anything other than laying on his left side & being left alone, and even that seems like too much for him at times.

He is getting his newborn screen redone tomorrow now that he is on full feeds and hasn't had a transfusion in 10 days. The doctor called the neurologist this morning and neurology isn't going to come see him because there isn't anything they can do for him, at least not for awhile. So that is off too. I asked about him being on caffeine and the doctor told us that it is meant to help him remember to breathe, so he won't get caffeine until he is closer to weaning off the ventilator.

The worst of the day was the news that the doctor delivered us. She said they (the neonatologists, neurologists, and orthopedists) all agree that Andrew will not be able to breathe or eat on his own. She said his scoliosis is going to require him to have breathing support throughout his life, which would be the same thing as the ventilator, but it would be something inserted into his neck into his trachea instead of a tube down his throat. As far as eating, with how much spitting up he does they do not feel that his mouth will tolerate a bottle. Once they get the milk to his stomach he digests it well, but he does not do well if there is anything in his mouth and he spits up. So the "fix" for that would be some sort of feeding tube in his stomach that would give him constant nutrition.

It is so hard to know that the doctors are planning on us having a severely disabled child when I still wonder how they can possibly know. I don't know if I'm giving myself false hope or what. I'm just tired of all of this....so tired.