Day 36 - 1

I've been awful at updating this thing.

Yes, we are still here at the hospital. Not a whole lot is new. Nicholas STILL has the right chest tube in. They repositioned it yesterday morning because the fluid was mostly leaking out into the dressing (and onto the bed!) instead of going in the tube like it is supposed to. So now we just wait some more until they determine the output is low enough to get it out altogether.

He is completely weaned off of one of his heart medicines, Milrinone, as of today. The rest of his meds they have converted to where he can take them by mouth or in his feeding tube. Now the only thing they need the central line for is to draw blood for labs.

We are trying to get him to take his formula out of a bottle now so that he doesn't have to come home on the feeding tube. I went to Whole Foods over the weekend to try to find more options to add to the formula to make it taste better. While I was gone, Josh was able to feed Nicholas a few bites of sweet potato baby food. Then a short while later, the doctor decided she wanted to try giving him a bottle of diluted apple juice to see whether it was the bottle he didn't like or the formula. He did drink 2 ounces of the apple juice, so it's definitely the formula he hates. When I got back from the store, Nicholas had a few red splotches on his face, which quickly turned into hives all over his body. Poor baby. Now we are not sure if it was the sweet potatoes or the apple juice that he was allergic to.

At Whole Foods I bought some cinnamon sugar and he actually seems to not completely hate the formula with that in it. He drank some yesterday for Josh, but then promptly threw up. I think he may have just drank it too quickly though. This is a learning experience for all of us.