I Can Hear You

Ben has had a great couple of days. His O2 levels have remained stable, with very few drops, even when Greg is holding him. He continues to sleep all the time, and the few times he is awake, he is so content. I have never seen such a thing! All the nurses say he is such a good baby - I had assumed it was just because of his heart condition. He is up to a whopping 7ml/hour of breast milk, which is approximately 6 oz a day. (Anyone who doesn't want to read about breast pumping, skip to the next paragraph!) I am making enough milk a day, over 60 ounces, to feed the entire CICU, so hopefully he will continue to tolerate the feeds. A wonderful dilemma to have, considering it can be difficult to maintain a good supply with pumping alone, and was one of my worries prenatally!

He had a hearing screen today which he passed. Unfortunately, his newborn screen, which tests for alot of different inherited diseases, had some conflicting (most likely false positive) results concerning his cystic fibrosis status. So he now gets to undergo what is called a "sweat test" as the definitive test. I thought they would just crank up the heat in his room like a sauna, but it turns out they have more sophisticated means to make him sweat. Poor guy. The CICU doctor and the transplant coordinator assure us that this does not affect his ability to be listed or to receive a heart while we wait for the results. That was really our only concern.

We had to meet with a psychologist yesterday as part of the transplant process. They told us it was routine. We think it was ordered after they discovered that we had three children within almost three years! We are still awaiting the results of the evaluation. (Just kidding!)

So otherwise, everything remains the same. We continue to stay with Ben during the day, and the girls at night. Greg has returned to working after not having any shifts for the last two weeks, and I am still on maternity leave for now. I am going to have to unfortunately start to figure out what to do with work, considering we have no idea when his surgery will be. Making future plans is extremely difficult when you don't know what the future holds.