Heartache

Evanna - 6 Weeks

I get the question: “How’s Evanna doing?” a lot these days. I don’t mind this question at all, because it shows that people care and truly want to know how she’s doing. I usually just answer that she’s doing well, eating and gaining weight appropriately, and maintaining excellent oxygen levels in the mid to high 80s – and sometimes even a 90 will get recorded (anything above a 70 is considered good for a cardiology baby). She’s very content and sleeps really well – especially at night, and overall acts like any other newborn. It’s soo easy to forget about her broken heart, and I do all the time. Looking at her, you would have no idea that anything is wrong, but her ECHOs say otherwise. Even people with medical degrees (our family doctor, her pediatrician, public health nurses, etc) get a dazed look in their eyes when I spell out her entire diagnosis. It’s a very rare defect, and complicated one at that! Tetralogy of Fallot with Pulmonary Atresia, VSD and MAPCAs. I try my best to explain the diagnosis in laymen terms to people, but there are parts that I still don’t understand, and honestly – it’s tiresome. 

We are so fortunate and blessed that we’ve been able to bring her home and get this time with her, but because of that, people have assumed that she’s fine and her heart is okay (“Oh your home! So does that mean everything is alright?”). So then I have to explain why she’s home, and it tell them that her heart is more complicated than initially anticipated, and they are unable to perform surgery at this time. Nick and I are faced with the reality of support and palliative care (because I can’t bring myself to spell out the definition, please google it if you don’t know what it means) for Evanna if certain things don’t happen and her collaterals - the MAPCAs part of her diagnosis, don’t grow bigger. So far they have, but we have to keep praying that they continue to do so. There’s no guarantee that they will, and Dr. Fruitman can’t tell us the likelihood of them growing because each and every individual baby is so different, and it’s up to her body to decide if they will grow.

I remind myself that each day with her is a gift. Sometimes I completely forget how fragile she is, and I hate thinking that though today is great and dandy, things can change so quickly. I just try my best to focus on the here and now and the fact that she’s doing so well. However, each good day she has, means we’re getting closer to the day when we have to pack up, head back to Edmonton and risk a very dangerous (but necessary and lifesaving!) surgery. I cry every time I think about it. I love being in the comfort of our own home and savor the normalcy we are enjoying right now, but it plays in the back of my mind knowing that this isn’t going to last for very long, and time flies so quickly.

We are literally living in the present, and taking each day as it comes. To be completely honest, I have angry moments where I am mad that Evanna was dealt this hand in life. I have sad moments where I hate not knowing what the future holds, and that we face the possibility of losing her. But at the same time I have happy moments when thinking about the medical advancements that have been made in the last 10 years giving us hope for her future. I have joyful moments when I just stare into her beautiful eyes and know that she belongs to me and that I get to be her mommy. While I’m the happiest I’ve ever been in my life, I’m also the most scared too.