Jacob has been breathing very fast at times. The doctors don't seem to be to concerned. He has done this off and on since coming off of the vent so it seems to be just the way he breathes, not attributed to the feeds. They decided to try putting him on another diuretic to see if that helps.
They are still keeping his oxygen the same so we can get the feeding down. He is barely on any at all so its not a big deal but we don't want to push him to hard.
Medications Jacob is on and may go home on:
• 2 diuretics (these make him pee more to help relieve fluid from the lungs)
• aspirin (This is to keep his blood thin so it won't clot in the shunt)
• one heart med (This helps regulate the pumping of the heart)
• reflux medicine. (This is for acid reflux, almost all hypoplasts are on one)
Sounds like a lot for a baby but its common with Hypoplast babies to be on all of this at first.
They are still pushing ahead with Jacob's feeding plan since he seems to still be tolerating it well. Right now he gets the breast milk over a period of 2 hours with 1 hour off. Tomorrow they should move to giving it all in one hour with two hours off. They are trying to get him on a more "normal" schedule. After he gets all of that down then we can try a bottle.
Fortifying the milk:
They are fortifying his formula right now with some added calories. He is still getting mostly breast milk. There is just a little condensed formula being added to help fatten him up. I told them to use lactose free to be safe because Aidan has always had to be on soy or lactose free. Thought better safe than sorry. He already has enough to worry about.
Possible Vocal Cord Paralysis:
CHOP has mentioned that a group called "Speech" will be coming down to experiment with a bottle soon but we have not seen them yet. Thinking it may be tomorrow. There is some concern because Jacob still has a weak cry. I notice him getting a little louder each day but its still weak. This may be a sign that he has vocal cord paralysis. They will eventually heal however for now it could mean feeding problems. If they are paralyzed then when he tries to take a bottle he could asperate the milk into his lungs. This would be bad. If it is only mild we could work on just feeding him in certain positions. If its more severe he would need a g-tube. A g-tube is a little button they would surgically put in his belly and we would have to feed him through that. That would be an additional surgery though.
Asking for prayers:
1. Please pray Jacob's vocal cords heal or are not damaged to badly
2. Please pray his breathing evens out.
3. Pray Jacob continues to do well so that our family can all be home together soon.