Thursday, February 12, 2015

CHD awareness week

This week is CHD awareness week (February 7th-14th)! I find it interesting that Olivia was born just two days shy of that. In case you don't know, Olivia was born with three heart defects. I'm going to try to explain them as simply as I can, I'm not a doctor so I don't know all the correct terminology but I did listen (the best I could) when all of this was explained to me. Her first (and most critical) defect was* CoA (coarcation of the aorta), the main blood vessel was narrow which was causing her heart to pump harder to force the blood to flow through correctly. This is the reason why her heart was enlarged when they did an echocardiogram. She had surgery for her CoA at eleven days old, there is a chance that it could become narrow again but her last check up showed that it was open like it should be. Her cardiologist told me that if it was going to become narrow again, it would have happened by now. I am very happy about that, her surgeon was amazing! Olivia also has two other defects, an ASD (atrial septal defect) and a VSD (ventricular septal defect). Both of these were put on the back burner while we dealt with the CoA, during our last visit we talked about them a little more. Basically an ASD and VSD are holes in the heart, in Olivia's case they aren't very big. Her cardiologist told us that they can close on their own over time so we just have to wait it out and keep an eye on them. One of them is no longer an issue, the other one is smaller now but it hasn't closed completely. I struggle with this from time to time because we still don't know if she will need surgery to close it or not, we wont know for a few more years and it scares the hell out of me (to be completely honest). She was only eleven days old during her first surgery and while it was horrible and sad to see her go through, I know she wont remember it. She was too young to understand what was going on, too young to be scared. Knowing that surgery may be necessary when she is four or even five years old gets my mind racing. How would I even explain that to her? I don't know if I'll have the strength, I'm sure I will find it but it will really break me down. I know I always say I'm going to be positive and I try my hardest. I'm sorry if I contradict myself but that's exactly what my life is, it's a roller coaster. There are major ups and downs when it comes to Olivia's health. Most days I feel like "I can do this! She is perfectly fine and life is great!" and then every once in a while I just wallow in my sorrow. It's extremely difficult not to wonder "why her?!" but why any kid?! It's not fair in the slightest but life keeps moving and we try to adjust. The more time that goes by, the more "normal" it becomes. I just wanted to take some time to get my thoughts out during this week, it's an emotional time for me. I also wanted to raise awareness, I have to admit that I knew nothing about CHD before or during my pregnancy, I never gave it any thought. I worried about a ton of other stuff  that I read about (all the things that could go wrong) and it surprises me now, CHD is so common but it's not mentioned very often. If I had the choice, of course I would pick for Olivia to be perfectly healthy but that just isn't the hand we were dealt. I am so happy she is here, she has overcome so much and she is a beautiful, sassy, and strong little girl who amazes me time and time again.

*I used past tense because her CoA has been surgically repaired.

My beautiful little heart hero.

Our CHD experience: She has heart disease
Olivia's story of hope: Little Hearts
Facts about CHD: CHD facts

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