April 17, 2010

Benjamin started the Omegaven on Thursday because his bilirubin levels were starting to rise and cause injury to his liver. Basically the Omegaven takes the place of the Intralipid he was getting. It’s a fat emulsion comprised of fish oils and it is administered the exact same way; through his central line. Although he hasn’t put on anymore weight since our last update, he should continue to grow on this, and after a few weeks we should expect to see his bilirubin levels begin to return to normal.

Because Benjamin started this new “investigational” lipid, he will not be able to return to the South Shore NICU. It costs $50 to $100 a bottle for this stuff and Children’s Hospital will cover whatever isn’t covered by insurance. Unfortunately, we were told South Shore will not. We had such high hopes of returning to the wonderful doctors and nurses we grew to love there! But, while Benjamin will most likely be part of this study for a long time (possibly years), Children’s is the best place for him.

He will finish his antibiotics today. He was on them for three weeks because of his intestinal surgery. Infection can be a common occurrence among extreme preemies that require long stays in the NICU; therefore, his blood will be continuously tested while he remains there.

I was very worried on Wed. when I heard he dropped his oxygen saturation into the 20s, started to turn blue and needed to be bagged. But, although his desats have continued, I am happy to report that he’s been doing much better over the past couple of days. He’s drifting down into the 60s and 70s, but for the most part has been able to bring himself back up with little intervention (maybe an extra breath or two of oxygen). The pulmonary neonatologist is coming back on Monday and I’m anxious to talk to him. Two weeks ago, he was thinking Benjamin could move to the CPAP, but held off because he didn’t want more trauma to his belly. Now that he’s on higher vent settings than he was two weeks ago, I’m wondering what Dr. Rhein’s thoughts are. It doesn’t seem like Benjamin will be moved to the CPAP or high flow nasal canula anytime soon, but we could be pleasantly surprised!

Around 8:30 last night he was wide awake. I got to change a diaper and Ryan and I looked into his eyes and talked to him for at least half an hour. Normally he’s been having his caffeine dose around 8 pm so we were shocked when we found out he hadn’t had it yet and was this alert. We cherish these times since his isolette is usually covered and we can’t see much of him.