Cute girl, bad heart

We got to the hospital today just as they were finishing reports. This is where the top 5 or so people that are over the NICU get all their information. They start at about 9:00 each morning and go from child to child. Its a very interesting time to be around because they talk very technically and openly about current and upcoming strategies for your child. They seem to be a very collaborative team.

The reason we came down however was because Ellie had another echocardiogram done today. Both Teri and I had pinned our hopes on this one. It was obvious, however, as the nurse was looking at her heart that the left ventricle was still very large and not pumping the way that it should. The nurse wouldn't tell us anything of course, so we had to wait for the doctor to come around. When she finally got there she smiled and told us that nothing had changed. We didn't smile.

We were both dazed after that news. Teri cried a bit. It slowly sunk in that we were in this for the long haul.

The doctor did say how good she was looking however. She and the nurse both agreed that they rarely see a heart baby that is so well diffused. (O2 getting around her body so well, pink toes and fingers etc.)

Another story that buoyed me up was a friend from work told me about her nephew (i think it was a nephew) that is now 3 years old and has 3 heart surgeries and is doing great. He was born with hypoplastic left heart syndrome. It is incredible what they can do. We are just working on our long term perspective.

They had to give her blood today as well, her hematocrit was low. I gathered this was because her acidosis was on the rise, but it didn't all sink in I'm afraid. I wish they didn't have to put the IV into her bad hand.

The doctor also prescribed milrinone in addition to the dopamine to help the heart beat better.