A Day To Remember

Today marks the 2 year anniversary of when our families whole world changed. At the time, it felt like the worst thing to ever happen in my life. During a routine ultrasound when we were 24 weeks pregnant, the doctors discovered Addy's heart defect. I don't think I will ever forget the feelings that I had in those next few moments and days. I wrote in a journal to help me cope with what we were going through. Looking back it seems like it was so long ago, and I realize just how blessed I am.These are some of the words I wrote that day....

"When the ultrasound was over, she asked us about screenings we had chosen or if I had any history of  diabetes or hypothyroidism. Immediately, Heath and I knew something wasn’t right, that was a big red flag. When she left out of the room to show the pictures to the doctor, we had a sick feeling, we knew something was wrong.... When Dr Boehm came in, he sat down in front of us. That’s never a good sign. He said the words “We think your baby has a complex heart defect”.....those are the words I will never forget, or the feeling of suffocation that followed immediately after....he didn’t just say those words. I looked at Heath and he had the same look on his face. He said “it looks like a corrected transposition…and a double outlet right ventricle…” and then he said the one thing in the world that we dreaded most. He said “… and it looks like there is a small hypoplastic left ventricle”.....and that was what would start our journey that would lead us to where we are today"

 The next day we had her diagnosis confirmed by fetal echo with Dr Soslow and Kavanaugh. It would turn out that Addy had a hypoplastic right ventricle, double inlet left ventricle, tricuspid atresia, corrected transposition, and a small aorta/outflow obstruction. Most of the rest of the story is history but has changed our entire lives. Remembering those initial weeks after diagnosis, Heath and I were a wreck. Our knowledge as pediatric cardiac nurses was damning. I will admit that we hesitated to buy much of anything before she was born because of our overwhelming fear that we wouldn't be bringing her home. As a nurse, you often don't remember the happy endings. You remember the sad outcomes of precious children that fight for their lives for months and months before their bodies can finally take no more. That is what we anticipated for the remaining 16 weeks of pregnancy. Thus far, our course has been far better than expected, although not without its own bumps along the way.   




Today, I am grateful for every single day that we are blessed to have Addy. She is truly an exceptional child, and I'm not just saying that because she's mine! She is 20 months old and not quite 23 pounds. She's petite, but unless you looked closely, you would never know she has a special heart. She is so smart, her vocabulary matches that of most 3 year-olds I have seen. She is stubborn and independent, which I think will only help her in her lifelong journey. She has a smile that melts my heart, and is an incredibly happy child. There is nothing that she can't do (besides walk very far) and she makes every effort to do things just like her big sister Maci. Her favorite activities are playing with her pet "chicks" and all the other farm animals. I do not take a single day for granted, and give her as many kisses and hugs as possible. We are anticipating her final Fontan surgery coming up in August, pending we are able to identify what her pulmonary issues are that keep causing her problems. My heart rate rises every time I think about August. A part of me (and Heath) has not quite fully accepted that we are going to be blessed to have Addy for a long time. I hope that after the Fontan the feeling of waiting for the other shoe to drop will subside and we will just be able to watch her grow into a little girl. Once again, our nursing knowledge is a curse and a blessing. I never imagined 2 years ago that we would be where we are today. I could not have asked for more. 

She loves her Cookie!

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Such a cutie!