Sorry for the lack of updates! We know you all have been wondering how Blaise is doing.
His heart has healed so well! His incision and drainage tube hole are both healing very good, and the nurses and doctors all say this too. He is on a variety of meds, but none specifically for the heart. His weight has continued to go up in large increases, and the doctors have watched this very carefully, as it does not correlate with his calorie intake each day, so they believe he is retaining some fluid. The biggest concern about this is that it's not fluid in his lungs. He gets a chest xray each morning to make sure that this is not happening, and outside of one small spot that has already gone away, no additional ones have shown up. Because of this fluid retention, he is on a high dosage of lasix three times a day. We continue to hope this helps do the trick.
Yesterday he had both an ECHO and an EKG and when I ran into Dr. Abdullah last night (one of the surgeons who also scrubs in on Blaise's surgery) he said he had viewed the ECHO of the heart and things looked good. We will wait for Dr. Danford, the cardiologist, for that official report. Blaise also had another heel prick for blood this morning.
Blaise has decided to become somewhat cranky. We don't think he ever got the huge Glenn "headache" we were warned about, but is just more irritable. I personally think he is sick of all the pokes and prods and constant annoyances and pain he is put through. Since I've been in and out so much the last two days helping get ready for the wedding, the nurses have had quite a bit. Evident ally he just wants to be held. He's developed an incredibly loud scream! Lots of comments on how great his lungs are!! I definitely don't blame him- I'd be sick of getting woke up 10 times each morning too!
On to the biggest battles we face each day- eating! None of us can figure this out. He will have a fairly "decent" day of doing 60 cc's somewhat consistently, then fall back to zeros'. Yesterday was one of those days when he didn't drink anything from the bottle for most of his feeds. Luckily, last night at 9 he did 60 for me, and Lindsay our night nurse got him to do 60,75, and 60. Obviously not even close to what a normal baby eats, but each step is progress. I'm really nervous being gone all weekend and not being here to feed him, but all will work out. We will for sure be going home with a feeding tube. This will take some practice getting used to at home. I told our nurse this morning my ultimate goal is to ditch the tube in a month, but my long term one is to have him eating good enough to be done with it by Christmas. Mixing his milk is such a math/science project! We mix 3 ounces of breastmilk with 1 teaspoon of Enfamil to fortify his milk to 24 calories. Then we mix 4 ounces of that milk with 1 packet of Simply Thick food thickener to make the milk a nectar consistency.
The various doctors all feel that Blaise would be able to go home today. Mike still needs to learn to put the feeding tube in once. We decided with all of the hectic busy schedule with the wedding this weekend, it would be best for Blaise to stay in the hospital through Sunday. Mike and I probably wouldn't be able to give him the attention and care he deserves and we don't want to stress him out with staying over night at a hotel, different people and more. So, unless plans change, we've requested a release date of Sunday!