Monday, September 10, 2012

Our First Trip to Michigan

June 28 2012
Knowing we couldn't make the 9 hour trip to Ann Arbor in one day with our appointments beginning so early we decided to head for Indianapolis on Tuesday.  We stopped to spend the night with Adam's brother and sister-in-law and their son Zac and this is where Chloe would spend her very first night away from us both ~ as Mommy and Daddy headed to Michigan on Wednesday.  I think it was harder on us to leave our sweet Chloe behind than it was for her, I doubt she even noticed we were gone! 

My husband and I were both anxious about our first visit and orientation of the hospital but we were ready to take this big step ~ feeling good that this was the right choice for our baby girl.   After a restless night of sleep, it was time to head to the hospital campus. 

The size of the entire hospital campus was quite intimidating, the size of the children's wing is as big as the hospitals back home! It was a very long, emotional day to say the least.  Our first appointment began around 8am and our last one was around 2pm and I remember leaving the grounds around 5pm to take the long drive back to Indy. 
We met so many wonderful people, nurses, and doctors that day. We started out having a fetal echocardiogram done and then meeting with Dr. Fifer, a pediatric cardiologist to go over the findings of the echo, which I will go into later on.  We then had an appointment with high risk OB and then we met with a genetics counselor and had another ultrasound study done to look at the growth and progress of our baby.  We met another high risk OB doctor in this appointment. Unfortunately we were unable to meet with the surgeon on this visit. 
We were given a couple tours of the children's hospital, and got to see the areas that would be pertaining to us and our baby.  This wasn't the easiest part of our tour either. It was hard to see the innocent babies and children in their beds hooked up to so many wires and machines.  It certainly is going to be difficult to see our OWN baby laying there in that very same condition. 

Here She Is!

So, what all did we find out and learn during our visit? 
By now I am 24 weeks along which made it a" little easier" to see specific structures of the heart and the rest of the body.  Not that the baby was cooperating very well, but at least they could see a little more.
We learned that our baby does indeed have HLHS and that they did see a little tiny bit of a left ventricle, which was hard to detect during our initial findings when I was 18 weeks along. They also found that it actually was the aorta that was smaller in size and the pulmonary artery was of normal size, this is more common in HLHS babies (during the initial findings they thought that it was the other way around).  BUT, they did confirm that both the aorta and pulmonary artery were coming out from the right ventricle.  This is also called Double Outlet Right Ventricle (DORV). She also has an atrial septal defect (ASD).  She will still need to have the 3 separate heart surgeries: The Norwood, The Hemi-Fontan and the Fontan to make her heart work as efficiently as possible.  It doesn't "fix" the heart to make it work and look like a normal heart, but it will enable the right ventricle do all the work of what normally would be done by two ventricles.  Below is one link to a great series of videos we found on our research on HLHS from The Children's Hospital of Philadelphia (CHOP)
What else did we learn this day? We found out during our last appointment of the day, after the ultrasound, that they noticed that the ventricles in her brain were "large".  Now, they put it on a scale of 1mm to 10mm, with 10mm being on the high end of "normal".  Our baby girl's was measuring at a 10. Now this is another issue they are going to keep a close eye on throughout the rest of my pregnancy.  What does it mean? Well, it basically boils down to cognitive development of our baby. 
Overall, the first visit went well and we were glad to finally see the place that we will be calling "home" for a while once we have our baby.  Unfortunately, we learned about things we weren't prepared to hear making the trip home somewhat quite.
We did make an appointment for a return visit to Michigan for Aug 9th and we went ahead and scheduled a c-section for Oct 11, 2012.  (I am opting to have a c-section because my first baby was delivered via c-section and I just feel safer doing it this way).
The Wind in Our Sails
UGH! Yet one more thing to worry about! Her heart, wondering what the extra chromosome material results will be, wondering if other organs in her body are affected, and now this issue with the ventricles! Needless to say, the wind was taken from our sails once again, our hearts seem go grow heavier and heavier with each doctor visit we have. We must stay positive, but that is proving to be quite difficult to do! 
Giving Us a Signal!!

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