the number five

Since learning about Heidi's heart condition, we've been given a lot of numbers. The first one though stuck with us all these years: "40% of children with Hypoplastic Left Heart Syndrome live to age 5". These were the numbers that had us consider terminating the pregnancy. Later, we were told that the numbers could be better. We heard about survival rates a lot initially, such as 85% for the first surgery at CHOP, and improving all the time. Then, the first surgery behind us, numbers focused on oxygen saturations (the amount of oxygen in the blood - normal is 100%, but hlhs kids live on a lot less - Heidi is currently around 90%), weight gain, calorie intake etc. etc. Weight is always an issue with heart kids, and Heidi did well, plotting her own line between the 5th and the 25th percentile on the growth chart. Lots of numbers everywhere during that first year. Husband plotted Heidi's food intake in a spreadsheet and showed up at the Cardiologist's office with a graph in hand to better argue for continued breastfeeding. And so it went.

Today we remember that first number we were given. We remember the Quinn's and Corbin's and the numerous other heart kids (get a box of tissues before you click on the link) who were not among the lucky. And we know just how blessed we are to have another day with Heidi, our little miracle who beat the odds so far.

Happy 5th Birthday, Sunshine!

doing the happy dance

I just found out that Heidi won't be going to the hospital for a heart procedure this year. Woohooo! I'm not sure on all the details (Husband spoke to the doc, so what you're getting here is a translation of sorts), but it appears that over the years that the doctors have closed the fenestration from the Fontan procedure in HLHS kids, there haven't been many proven benefits to the children. So as long as Heidi keeps running us ragged, has high energy and spends very little time looking like a blueberry, she is off the hook for this.

Sometimes relief can feel a little intoxicating! Excuse me while I go dance with my kids.

just wanted to share

I always feel inspired when I read or hear about the relatively normal lives of teens and young adults with complex heart defects. When we received Heidi's diagnosis (five long years ago now), we were told that statistically, 40% of the children with her condition (hypoplastic left heart syndrome) live to age 5. While the survival rates at the Children's Hospital of Philadelphia, where Heidi had her surgeries, are higher, somehow, until her third surgery, I could never picture her actually growing up. Now that she is going on 5 herself, we are much more positive. Still, with only a few of these patients in their late teens and early twenties, it's good to hear the stories of their lives. I am particularly drawn to hearing about those who refuse to be defined by their illness. We work very hard to encourage our children to live full lives and not let their challenges hinder them. So it's always good to read a story like this one.