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

Heart update!

I didn't sleep much last night because I was worried about Liv's cardiology appointment today. She hasn't been to the cardiologist since November. Everything looked good back then but every time we go, I cross my fingers hoping for good news. It's really scary not knowing if things will be better or worse. Paul came with us today, I was glad because I really hate going alone. First she had her EKG, she cried a little bit but she was pretty good for most of it. The nurse was trying to play with her and distract her. She gave her some Dora stickers and Liv was happy, for about a minute. Then she had her echo, that took longer but luckily they had a Dora DVD so she watched that while they checked her. It only worked for about half the time, she would cry for a few minutes and then watch Dora for a few minutes and then cry again. So it went okay but she got pretty mad about halfway through and tried jumping off my lap. When we saw the cardiologist he said he was really happy with her weight gain. She jumped from 5% last visit to 10% this visit, he said that's really great. I asked a bunch of questions (of course) and he put my mind at ease a bit. Her coarc repair still looks good, it's growing with her and it's wide open like it should be. Her asd and vsd (holes in her heart) closed a little more but not completely. They are going to keep monitoring them and if she ends up needing surgery it won't be until she's around four or five. I'm really hoping that she doesn't need another surgery, the doctor seemed optimistic that she wouldn't. He also said that sometimes they can do a cath procedure instead of open heart surgery. I rather do that, well.. I rather it not be an issue at all but I'm really hoping we are done with heart surgery, I don't know if I can get through it again. I'm glad the doctors are happy with her progress and I hope she continues to do well. We don't have to go back for another six months, her next appointment is the first week in December so I'm going to try to put all my worries aside until then!

 

These pictures pretty much describe the whole visit. Distracted, crying, distracted.

Busy weekend

Sorry for slacking with the posts, this is the first time all weekend I'm sitting down to relax. Okay, maybe a bit of an exaggeration but it was a pretty busy weekend. Yesterday we went to my friends daughters first birthday party, we had a really good time. It's cute to see Liv "play" with kids around the same age as her. They have an outdoor cat and when Olivia saw the cat, she started screaming in excitement. The cat ran away of course (smart move) and then she kept trying to chase her, she's nuts. After the party, we went store hopping looking for a red shirt, I wanted one for today (red for heart disease). When we finally got home I had to give Livy a quick bath, feed her dinner and get her to bed. She fell asleep quick, we were out pretty much all day.

 

Team Livy - Heart Warrior! Her lovely parents/grandparents/cousins/aunt & uncle

WE LOVE YOU OLIVIA! 

Today was the March of Dimes 3K walk (although we took the long route so I think it was more than a 3K for us), Olivia was still sleeping when it was time to leave this morning so I had to wake her up. She was cranky when we first got there but once I started pushing her in the stroller she was fine. The walk was fun, Team Livy was taken so we were Team Livy - Heart Warrior. There wasn't many of us because I kind of gave short notice, other people wanted to come but had previous plans and I also forgot to mention it to everyone. I think next year I'm going to have shirts made for Team Livy, that will be cute. I am glad we were able to recruit a few people though! We earned over $500 for the babies. Thank you to everyone who donated and a special thanks to everyone who walked with us! It's great to have such awesome support from our family and friends. We actually made it on the news for a split second, that was pretty cool to see. Olivia was exhausted by the time we left, even though she just sat in the stroller and ate the whole time. I'm glad that she slept on the car ride home but then she was cranky for a few hours so she took another nap. I got a little sunburn and now I'm beat, tomorrow is going to be a nice relaxing day (I hope). Fingers crossed that Olivia sleeps in so I can too!