Trip to CHOA

   First,  I want to thank everyone for their thoughts and prayers for our trip today. The drive to Atlanta and back was quick and uneventful  which was made possible by our awesome friend Kristina who watched Thing 1 and 2 for us - ALL DAY. 8 hour roundtrip = no fun for a 5 and 3 year old.
I was really anxious on the way to the appointment. I knew I would be so I brought the huge box of photos I ordered in 2010 (yes you read that right and that was the LAST time I ordered prints of our family - gasp) to finally put in an album. I got through about a month's worth and my phone rings - it's another HLHS mom and nurse our cardiologist thought I would like to meet. Her son is 3 with HLHS and she has 2 daughters too. She had really great things to say about Atlanta and Dr Kanter, their chief thoracic surgeon. We talked forever and the trip there just flew by so "Thank you Jodi!"

   So, what do we think of CHOA? We really liked it. It definitely felt smaller then CHOP - and I liked that about it. We really liked the nurse, Tracy, that gave us a tour of the facilities and talked to us about the flow of events that typically happen after the baby is born. Prostaglandins administered to keep his ductus open in his heart so his body continues to get the oxygenated blood he needs, probably intubated because they often stop breathing after the Prostaglandins are given, then brought from the hospital where I will deliver to Childrens which is about a 20 minute drive away. Then a full work up of tests to see what his heart is doing and what it really looks like because until he's born they really don't know.

   We went in the surgical ICU and stood a foot away from a newborn recovering from his open heart surgery. So tiny and beautiful. So heart-wrenching with the tubes and the monitors. I teared up which caught me off guard - here I 've thought I steeled myself by watching HLHS videos on YouTube and poring through other survivors and angels postop pictures.... nope, not steeled. A blinking, stunned mess trying to keep it together. Aaron got about 3 feet away and stopped - couldn't come closer. And, the worst part? The nurse told us Macsen would have 3 times as many tubes and wires when he gets out of surgery.

   Dr Kanter was very honest without being brutal. He also has doubts about Macsen's tricuspid valve -  even using the term "ebsteinoid" (referring to another heart defect called Ebsteins Anomaly) http://childrenshospital.org/az/Site1963/mainpageS1963P0.html  Macsen's valve is not leaking and he has a few other differences that kept the doctor from saying definitively that it was E.A. but the way it is positioned and the way his heart looks on that right side are similar. When you have just one of these defects surgery is possible and the baby has a good chance - but with both the right and the left side being compromised... not great.
   We knew this already  - we weren't expecting awesome news. We were there during the echo that Dr Kanter was talking to us about and had discussed it with our Cardiologist. We are trying to focus on the fact that his valve is not leaking - not that if it does, and all the experts we've talked to are surprised it isn't, our baby can't make it to birth and will have very few options if he does make it to birth.

Can't focus on that - push that out of mind.

Those thoughts are there - always crowding their way in when I let my guard down but I die a little every time my mind creates that reality. I can't live through it a hundred times in my mind. And if it does happen will I be any more prepared for having lived the possibility over and over in my head, my heart? I don't think so - I think it will be just as horrible- maybe more horrible because I didn't enjoy the time I have now, today with this baby boy. Feeling him grow and twirl- feeling his heels push my belly button inside out. I love him and I  have to do my best to stay in the present and enjoy what I do have.

We have another echo in 12 days with our cardiologist in Pensacola. We'll see what his heart has done - if anything has changed, grown, gotten better or worse... that's all we can do. Appointment to appointment always a mystery. I have a regular OB appointment tomorrow - kind of appointmented out... Please keep us in your prayers - prayers for Macsen's heart and for mine too