Cardiologist Appointment Tuesday, April 20

We were able to go to Primary Childrens for this Fetal Echo appointment. Then we were able to talk to Kim the Fetal Heart Coordinator and Pat the Cardiology Social Worker. We were also able tour the CICU( Cardiac Intensive Care Unit)- which is where Severin will spend most of his time, and also the U. Hospital- which is where it will all begin.
The fetal echo was not as boring as before the tech, LoriAnn, talked to us more and we had a cardio student, Dr. Hoffman, with us also. It was still long and I had to hold still. Severin was very wiggly, but tried to stay in a good position. His anatomy was better developed (bigger) so more could be assesed. The goal is to get as much information before he is born, so that the plan of action can be in place.
When we met in "the room" with Dr. Puchalski-I think that was his name- we had who I lovingly called the "groupies" in with us. Dr. Hoffman, Kim, and Pat. We discussed Severins heart anatomy. Dr. Puchalski is not satisfied with the diagnosis of HRHS (hypoplastic right heart syndrome) he wants to know why the right ventrical didn't form properly. That's great! BUT Lets back up a bit, when the cells are dividing in the embryonic period and the heart cells get together to form the heart it is shaped like a tube that rotates (sounds symbolically God like- the earth & universe rotate, a bit like eternity- a circle, IDK) and then turns and twists to form all the chambers and the arteries cross over. All this happens before you even know you're pregnant. I imagine it is like a balloon animal. Severin got a sword instead of a giraffe for a heart. It just missed a few turns. Now the Drs. and their knowledge get to figure out how to make this sword work like a giraffe. It won't look like a giraffe but it can run like one! This is when it gets a little sureal for us. We start discussing the procedures. At birth they will need to combine the pulmonary artery with the aorta making one big out flow vessel from the one big pumping ventrical. Then because the lungs can not handle the same blood pressure as the whole body, then they make either a shunt (a little connection) that comes off a branch in the aorta, or make a new vessel that plugs in directly to the ventrical. Have I lost anyone yet? Don't worry we will have pictures available at the next famliy function. LOL! And we are not done. As I mentioned before Dr. Puchalski was looking for the why. Severin also has an issue with his Aortic Arch. That's the part that supplies blood to the whole body. He has an "obstruction" or a more narrow part in his arch. To fix that it takes medication to keep the PDA open ( it is only useful as a fetus and usually closes after birth) and then take out the narrow part of the aortic arch and put it back together. As you can count that is three proceedures at once. This will be a VERY long surgery. We are back to the 60% survival rate in this surgery, it is the most critical and crucial for getting back to "working like a giraffe " kind of heart. Every Heart has it's own story, we hope Severins is a long living one. Keep us in your prayers, I know we would not have made it this far with out them. We had a lot of questions answered but there are so many more.
All Our Love to You!
Thom & Ang.