The past 10 days have been pretty tough for our little guy. Lots of tests, blood work, UV therapy, etc... Currently, he is still in the NICU and is doing pretty well. He is now feeding on a bottle (a whopping 10ml) every 3 hours. Today they removed his nasal feeding tube and we are hoping that he will continue to eat and grow. He now weighs 4lbs 2oz and his weight increases a little each day. His belly button feeding tube has been removed and he is breathing 100% room air.
Today was a good day... His sodium was back to normal and his acetosis was also improving. They originally thought he may have Diabetes Insipitus (excessive thirst and pee-pee), but now they do not believe he has it, because his urine output is down to normal. They put in a central line for meds, IV, and to draw blood. Unfortunately, the line was placed in his neck which looks very uncomfortable. I don't think he likes it much. Cathy is able to hold him for a little while each day.
No updates from the cardioligists yet. The last time we spoke, they were going to meet as a team and review the results of his tests so far and better define the treatment plan. It still seems that surgery could be 2-3 months away. We try desperately to know when he may come home, but no one seems to know for sure. We want him to stay as long as he needs to, but it will be nice to have him home for a couple months prior to surgery.
We hope to know more next week. For now, he is doing well. The heart defect is still the major life threatening hurdle (long term) and the treatment plan is not clearly defined yet. More to come...