Wednesday, October 28, 2009


I fully intended to blog today. I have a lot of my mind that has been causing me stress. I needed to vent. And then I saw the words I hate to see. "Pray for Stellan". Oh no. I flew right over to their blog to check up on the sweet baby I've been following for months now. Stellan battles supraventricle tachycardia (SVT) and this is looking like the worst bout yet. I still have a tear stuck in the corner of my eye from reading about how things changed so quickly for him last night.

Stellan turns ONE tomorrow! Please pray that his little body can snap out of the too fast rhythm so that he can enjoy his birthday.

Having a heart child is not easy. It's a daily struggle. What Stellan is going through is what my own son, Brandon, potentially faces. Although Brandon is at low risk, his IS at risk. We've taught him to tell us if he feels like his heart is beating too fast or if he feels "butterflies" in his heart, or if he's in any pain. So far, he's told me twice. Both times we took his pulse and it was a little on the fast side, but completely normal. I'm very glad Brandon is aware of his body and tells us when things don't feel right. Poor Stellan doesn't have that option yet.

Heart defects come in so many forms. From the very serious single ventricle defects like Tommy suffered from to short PR intervals that Brandon has been diagnosed with and everything in between. Too fast rhythms, too slow. Holes big and small. There are so many! Here is a website that lists several heart defects. Tommy's is listed under Single Ventricle and is called Double Inlet Left Ventricle if you'd like to read about his. To read more about Stellan's condition, I found this link.

I wish I could reach out to every single heart parent in the world and scream that I understand. I pray for MORE research, MORE awareness, and someday a cure. Nobody knows why in those first early weeks of pregnancy does the heart not form properly. It's so early in the pregnancy that many are not even aware they're pregnant yet. Heart defects don't discriminate.

I am just one voice, asking for prayers not only for a little boy, but for ALL kids out there suffering from heart defects. Tommy was blue his entire life. I never got to hold and play with a healthy pink baby. I've seen him pink twice. Both times he was sleeping, on 100% oxygen and it was only for a moment. A rare glimpse at what would never be.

Tommy has so many playmates in Heaven now. Please pray he doesn't get any more for long time. Especially Stellan. Pray not only for Stellan, but his wonderful mother who shares his story with the world and for his family that loves him very much.

1 comment:

Anonymous said...

Thanks for introducing me to Stellan months ago... I'm thinking about you too...

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries