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...

Boston

This past weekend Adam and I went to Boston to visit with the doctors at the Boston Children's Hospital for a second opinion. Going into the weekend, we were already leaning towards staying in St. Louis for Stella's care, but wanted to have peace of mind knowing we had met the doctors at the #1 pediatric cardiology program in the country and heard what they had to say.

We met with their head cardiologist, who was incredible, as well as his fellow and some other doctors and nurses who showed us around. As far as Stella's diagnosis, we didn't learn anything new (always a good thing!) but surgically, their technique is slightly different so it was interesting to hear them compare and contrast the procedures. Ultimately, they achieve the same goal and it comes down to the preference of the surgeon, but I am constantly blown away by the advances in medicine and the options for our daughter's tiny heart. At the end of the meeting we toured their cardiac unit and while it is well oiled machine, it was almost TOO big. I felt completely lost and was somewhat discouraged that the families of the patients aren't as involved in rounds or daily care. They get about 4 times as many HLHS patients a year which definitely leads to their successes in care, but made me fear Stella could get lost in the shuffle of sick baby after sick baby.

We were incredibly grateful to everyone who took the time to meet with us, answer questions and offer assistance, but left Boston with a peace that we are in the right hands at St. Louis Children's Hospital. Not only do we have family and amazing friends here to support us, but we are truly blessed by the team we have met and trust them completely. And on top of everything else, I cannot imagine moving to Boston with the twins for 3 months in the dead of winter - sorry, North Easterners, but you all are crazy :)

Coming back to the twins was a perfect reunion and confirmation that we all belong here, together, at home. The countdown to baby Stella continues - less than 11 weeks to go!