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

Cardiology appointment

Olivia had her cardiology appointment today, when we got there she was running around the waiting room. I couldn't even sit down because I had to chase her around the whole time. She was not happy about getting her blood pressure taken, that put her in a cranky mood. Too bad that was only the beginning, during her echocardiogram she was crying on and off for the entire half hour. Luckily they had the same Dora DVD from last time we were there so that distracted her just enough to get it done. Right as Dora was ending, the echo was finished. The technician who did it was the same one who did it when we brought her to the ER at five days old. She has seen Olivia a few times since then and we talked about how tiny she was and how far she has come. I was surprised at how much she remembered, she even knew which room we stayed in. After the echo, she had to have an EKG done, the lady who did it was really nice, she was great with Liv and basically played with her the entire time she was doing it so Olivia barely noticed what was going on. After she was done, she gave Liv a cute little princess sticker and Liv didn't want to put it down, she walked around with it while we waited for the doctor. She was also messing with everything in the office, mainly the computer keyboard and mouse. Her last appointment was six months ago and not much has changed since then. That's not a bad thing, her VSD is still small and her ASD is as well, her coarc is still open like it should be. She's still on her own curve for weight and height. I asked a few questions, I wanted to know if she would have any physical limitations and they said no, besides being a body builder (I doubt that will ever be an issue). We wont know if she will need her ASD closed until she is between three and five. Her next appointment is next December, she will be almost three at that point so I will be extra nervous at that visit. The doctor was confident that even if they do need to close the hole, it can be done by a cath procedure and not open heart surgery. When we walked back out into the waiting room, there were some clowns (part of the children's hospital, not some random crazy people) blowing bubbles, playing a guitar and singing songs. Olivia ran right over and started popping the bubbles and dancing to the music, it was so cute. I guess the clowns didn't see me because they asked Olivia where her adult was so I had to yell across the room. There were some older kids watching the clowns too and one of them almost knocked Liv over but she didn't care at all, she just kept playing. It was a pretty long visit (over three hours) so she fell asleep on the way home. I wasn't happy about that because I knew she wasn't going to nap once we got home. I was right, it's only a twenty minute ride home so obviously it wasn't long enough to get the rest she needed. She had a meltdown around 7 so I ended up putting her to bed earlier than normal. I'm happy that we don't have to go back for a whole year. I'm hoping that next year she will be able to understand better, she was scared today because she obviously didn't know what was going on. It was a long day and I'm exhausted so it's off to bed for me!

Her cheeks were so red from crying during the echo, my brave little girl.

Things I never thought of

I remember when I was around 19 years old and I went to my first dentist visit without my parents. I had to fill out a form, there were tons of questions about having different diseases (check yes or no). I remember going down the list (quickly and slightly annoyed) checking no for all of them. One of those things was heart disease. When Olivia goes to the dentist, she will have to check yes. I know that doesn't seem like a big deal but the fact that a simple visit to the dentist can be dangerous for her is so scary to me. Heart disease was never something I gave much thought to but now, it's always in the back of my mind. If I overhear someone else's conversation and heart disease, heart failure or a heart attack is mentioned, I freeze. It always stops me in my tracks and I try to listen in, I probably shouldn't but I always want to. Even when I see commercials on TV for medication and they say "Do not take if you have heart disease", it makes me cringe. I see so many people asking questions in the heart group that I wouldn't even think to ask. Will Olivia be able to ride roller coasters? Will she be able to go to a haunted house? Can she take certain medications? Will she be able to have kids? I have no idea. I always write down all these kinds of questions so I can ask her cardiologist. I will be sad for her if she has to miss out on experiences. When people look at Olivia, they see a normal kid. She runs around and plays, she looks healthy but I feel like her heart disease is always hiding in the shadows, ready to flip our world upside down again. When I can't fall asleep (often), my mind starts to wander. I think about when she is older, if she will be embarrassed about her scar or if kids will make fun of her. I will do my best to teach her to be proud of herself but I know I can't shield her from everything (I wish I could). When she's my age, will she take care of herself? Will she go to her cardiology appointments like she's supposed to? I know, I think way too far into the future but even when she's an adult, I will remind her to be careful. I know she is okay right now, I will always treat her like she's a normal kid. I wont let her heart disease define her but it's definitely a part of who she is. It's her story and there are so many little reminders of that every single day, it can never be just brushed aside. Even when people ask me about having another baby, the first thing that pops into my mind is "Will the next one have heart disease too?". I don't know what the "normal" baby experience is, I feel like I was robbed of that. When Olivia was born, she was rushed away from me. We weren't able to spend all of our time in the hospital room together, she was in the NICU. I couldn't hold her for weeks, I couldn't breastfeed her, I could barely even bottle feed her. If the next baby is completely healthy, I feel like the experience will be so different. As much happiness as I had with Olivia, there was a lot of sadness that came along with it. I was scared most of the time and then I felt guilty. I wanted to just be happy that my baby was here and alive but I was so nervous that I would lose her. I don't want the next baby to go through any of that, it would break my heart just like it did with Olivia. This turned into a long ramble, I feel like I just typed out a bunch of scattered thoughts so I hope this post actually makes sense. I always wonder if other heart parents feel the same, it's nice to know I'm not the only one.

So thankful for this beautiful little miracle.