Today's appointment

Some of you know we went to Pensacola today for our requested cardiology appointment. After our appointment last time w/ the maternal medicine guys I feel a lot better about this one. It was at Nemours Childrens Hospital in Pensacola with Dr Mehta. She will probably end up being the baby's cardiologist if we are able to bring him back to Alabama. She (and the echo tech Cindy)  do the echo together and explain everything as you go along - so great when you're used to lying there and having the tech say "I can't really say anything. When the doctor comes in he'll tell you what he thinks."
  They pointed out the tiny aorta that we already knew about - it measured .26 when the pulmonary artery next to it measured 5 (they should be roughly the same.) It has retrograde flow meaning blood is going backwards in it which we knew also. The ductus is open and plenty of blood is getting to the baby - as long as it stays open. It naturally closes after birth and that is why we have to get him treated right at birth - to keep this open as long as we can with medications until his first surgery can be performed. She spent a while studying his tricuspid valve and was happy to tell us it is NOT leaking - great news. It is differant looking though and located further down than normal.  The DR did say she couldn't see the left ventricle at all - they had been able to see a tiny slit like area at CHOP but she couldn't even see that.No aortic valve or mitral valve.  She also said she feels the baby's heart is lying differently in the baby's chest - she was able to see blood flow in and out in the same plane on the echo which she said is impossible - usually. Hello, meet Macsen! His right ventricle looks different too  - she kept saying "primitive" and when you're talking about a power-plant to power a whole body primitive doesn't sound good - I see Flintstones feet running to power his car. Aaron thinks he's just a super baby that's adapting and changing his physiology to survive - crazy man - I love him so. Dr Mehta wanted to study the images more and will watch everything again in slow-mo and call us. We see her again in 3 weeks. She's also setting up an appt with Childrens in Atlanta so we can meet their team and tour their facilities. I don't want to rule them out yet. I know having the baby there and getting him treated there would be easier on me and my family - I just don't know if it's the best thing for Macsen. I'd like for them to see his heart and give me their ideas/odds/statistics.
   Great things from the past 2 days?

•    The girls had a great time seeing their Uncle Sam who made us sushi - nothing raw for me - but all delicious. And his girlfriend Charlene brought them to a movie while we went to our appointment and then to Toy's for Us (the girls used to call it that and I can't let it go.) Such a blessing. It's hard talking about all of this with a doctor with your 5 and 3 year old in the room. 
• We were able to celebrate Father's Day at the beach where Aaron got slightly crispy but found tons of cool shells.
•  Dr Mehta loaned us a book "The Heart of a Child. What families need to know about heart disorders in Children." 
• The room where we got our echo - where the baby will have to get echos as he gets older - was dimly lit w/ led candles flickering on the shelves and one of those motion aquarium lights. And a super comfortable bed - not an exam table. Such small things but so great.