Day 7

Today was a big day for our baby girl.  We are 4 days out from her Norwood and she was scheduled for chest closure this morning.  Stella was all ready for her procedure to start first thing this morning but other events on the floor (unrelated to us) meant that she didn't get started until around noon.  The procedure went smoothly.  After about an hour and a half, we were able to sneak back in the room and see her for a few seconds while they were still cleaning everything up.  When I saw her, it was as if a huge weight had been lifted.  I know that Stella still has a very long way to go before we can take her home and appreciate that their will be setbacks along the way (it is only a question of when with this disease) but knowing that she was "whole" again gave me a moment of peace and comfort.

After the first surgery, which is done in the OR, the rest of the procedures are performed in her room.  They basically shut down the unit to non-essential folks, and perform the required operation(s) on your baby in the same room where you were sleeping last night.  It is mind boggling, but so is the concept of trying to move her with all of the IVs and tubes that she is hooked up to right now.  Along those same lines, they were able to turn off another cardiac support medicine!   Our little girl is proving how strong she is everyday.

The plan for the next few days is to ensure that she remains stable while they continue to ween her from the cardiac support medications and the ventilator.  If she behaves tonight, they have said that she will get to "eat" (through an NG tube likely) very soon!

Stella says night night...