Friday, December 6, 2013


We like super heroes in our house. I wasn't much into them until I had a little boy who was interested in them. Since then, I have really enjoyed all of the movies and even beat my first ever video game (I know, right...) - Lego Batman. Colin would grab a controller and even play along. We are so looking forward to the new Lego Marvel game.

We call Colin "Captain America." He is one of our favorite super heroes and every time Colin gets dressed, his skinny little body in his boxer briefs looks just like Captain America did when he was enlisting and before being beefed up.

When Charlie got here Andrew asked what we call him - Superman? I said, "Nope, Ironman. Because of his heart." Now, Ironman didn't have a heart defect. He had shrapnel or something in his heart and something made to keep it beating even with the metal in it. So it isn't like they have the same heart thing. But the glowing light on Ironman's chest makes me think of Charlie because for 3 months all I could think about what his heart and what might be going on with it.

Here's the latest on my little Ironman. We went to the cardiologist yesterday. The PDA (heart murmur) had closed, as expected. Yay! We then had an EKG and an ultrasound of his heart.

When he was in my belly, they diagnosed him with Bicuspid Aortic Stenosis. His aortic valve appeared to be narrow, which made it hard for his heart to pump blood through that valve to his aorta. They would measure velocity and that normal reading would be 90. Charlie would typically be anywhere between 160 and 240. So it was working hard to get it where it needed to go.

Along with the narrowing, I found out at 37 weeks, when I saw the cardiologist, that his valve had another small defect. Instead of opening and closing with three flaps when it pumped (like a Mercedes logo), two of the flaps were fused together (or never separated).

Since he was so big at that point, the ultrasound couldn't show as much because angles were hard to get to. So we knew we would find out more after he was born and we could do an ultrasound on his chest, outside of my body.

At yesterday's ultrasound we learned that he definitely has the bicuspid valve. But he does not have the stenosis! Praise God! He can still develop it, but I am so thankful that at this point he does not have that narrowing.

Since the blood is being pumped through that valve and the opening is uneven, it is causing dilation in that vessel. This is what might cause the stenosis at a later date. So the plan right now it to have monthly appointments to see how his heart is doing and if there are any changes. I was worried that it could change fast and I would need to watch for symptoms at home, but the Doctor assured me that monthly ultrasounds would be enough to catch any problems because it would be a slow process.

If he does develop stenosis, he would need a procedure that would open up that valve to allow blood to flow more easily. I can't remember what it is called, but they use a balloon type thing to open the space. Cardiologist said there is a 50/50 chance he will need to have this done in his first year of life. I am so thankful he didn't need this right away when he was born.

That is the update so far, and I feel so much better now that the initial appointment and final diagnosis is made.

Here are some pictures from my phone, as I'm still working on getting them off my camera. =)


  1. Love the Ironman nickname! Made me tear up reading that actually :) So glad things are looking good for Charlie and that you can have peace of mind by going to the doc every month!!

  2. Heart babies are the best! Bates had open heart PDA surgery at one week old (and all of 2 lbs!) We have graduated to yearly check ups now for the murmur he still has.
    Nell had the PDA surgery last summer, but done like the balloon surgery through the veins. She will more than likely be having open heart surgery when she come home to repair another heart issue! Go little Charlie!!!