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.

Family Photo

Thanks to Morgans yearbook class knowledge, we were able to put our last family picture on the blog !! Yeah us !!! Who says our kids aren't paying attention?

Perinatologist Appointment April 12 at UVRMC

Hello Everyone!
Today was a "good" appointment. I thought I'd start by telling what the point of a Perinatologist appointment is all about. It is a monthly visit where they check for growth consistant with the gestational time, aminotic fluid levels, babys heart for any anatomy changes, & babys body for any anatomy changes(defects). So today we are still having a BOY, my aminotic fluid is perfect. Severin weighs 2 lbs 4 oz and they are usually within a few ounces of actual birth weight. His heart is still the same 3 chambers with a little 4th. No signs of distress, or abnormal anatomy in the heart or throughout his body. His measurements put his gestational age at 27+ weeks and I am not even 26 weeks yet. So maybe he will be a chubby like Johnathen?! He looks so much like Johnathen and Neleh. It just reaffirms I am the weaker gene against the"Quist"gene. We are going to try and get me to 39 weeks, BIG BREATH, which freaks me out because Neleh was born at 38 weeks and we all know how FAST that was. I just want to have everyone ready for him, no surprizes. The hope of 39 weeks is an big healthy baby (except for his heart of course), but even then his heart and most important his lungs will be able to handle a surgery. Again Dr.Dion-Townsend said this should be a normal delivery, pregancy should continue to progress normally. Heart babies thrive until they are born. That is the unknown we can't prepare for until a little closer to "D" day. I feel like a ticking time bomb already. What am I going to be like the end of June! Anywho check back next week for the Cardiologist update!
Loves!
Angee

FYI on the upcomming Drs. appointments

I just wanted to let you know we have our next Perinatologist appointment on Monday April 12, and our next Cardiologist appointment is on Tuesday April 20 - this one is our LONG one at Primaries, so I might not get an update posted until the next day. So stay tuned around those days. Loves, Angee

And So It Begins

Ok,so here I go. Hopefully I will get better at this before I need to keep everyone updated on Severin. Be patient with me.