Today’s update:

A close up of Brandon. Notice how good his coloring looks. The room is a little dark and we hate using the flash too often because it always startles him so we haven’t put up too many good photos of Brandon.

Katelyn is getting big. She is almost 2 lbs 7 oz. The doctors were concerned about putting Katelyn on a big dose of steroids because of all of the potential side effects. However, after a lot of consulting, they learned that the recommended dose was rather small. They also realized that the hemangioma only became apparent and began to darken after they changed the steriods they were giving her for something else. It was a little different steroid than the dermatologist would normally have recommended but everyone feels comfortable putting her back on same thing that seemed to be working previously. Most likely the steroid treatment will need to last for a long time, up to a year.

The pediatric dermatologist is hard to get an appointment with. The doctor suggested that we call and arrange and appointment when Katelyn is taken off of the ventilator because it is typically about 1 month after that time that babies can go home. This was interesting news to us because we had never heard this estimate.


Brandon isn’t growing much. It isn’t incredibly alarming but the doctors are going to see if they can give him a little better nutrition. It sounds like he won’t begin feedings until after they have removed the t tube from his stomach. We need to talk to the surgeons to see how long they think this it will take until he is ready. By the way, the surgeons have been really happy with his progress.

We also learned that they are going to move Brandon back to the Dragor ventilator. This slightly alarmed us because it hasn’t been successful the last two times. The Doctor took the time to explain that he believes that the other attempts where complicated by other problems, like infections. He also explained that he is concerned about damage that may be caused to his lungs because he has been on the oscillator for so long. With this explanation it sounds like a logical step. It will be a big step in the right direction. They are going to try it tomorrow morning so everyone cross your fingers and say a little prayer.