This year however, I know why the week of February 7-14 is special. It has NOTHING to do with Valentine’s day, but it has EVERYTHING to do with HEARTS. It is Congenital Heart Defect Awareness Week. That’s what Bogey was born with. (Pulmonary Atresia with VSD & MAPCA’s—see tab above for more information)
Two years ago, I didn’t even know what a CHD was, nor did I worry about if any of babies might have one. Because I was pregnant with twins at the time, I was getting regular ultrasounds. All four chambers of both babies hearts were there, so I thought I didn’t have anything else to worry about. I understood that some babies were born with imperfect hearts, but certainly, that would never happen to us.
I was not aware that CHD’s affect 1 in 100 children. I was not prepared to learn that my baby was the 1. I had never researched the domino affect that a CHD has on a baby. For instance, most heart babies need a feeding tube for a period of time I never imagined we’d still be depending on the surgically inserted G-tube, even two years later. Being in the hospital for an extended amount of time hinders development—those little milestones are even a bigger deal after months of occupational, physical, and speech therapy!
Babies with the CHD are not the only ones affected. Our family has made plenty of adjustments to our lifestyle—including a major career change and relocating to be closer to family assistance and medical facilities. As a “heart mom”, I had no idea I’d fall victim to such anxiety and worry. (Nor did I ever realize my creativity in conjuring up “worse case scenarios”—with a little help from Google & WebMd of course).
The best thing about this CHD gig, however, is recognizing the good in our world. We have relied so heavily on our family and friends, knowing that they were there for our little Par 5 family (alright, fine. So, five kids and two parents isn’t exactly the definition of “little” family). This past week, has been no different. We had friends and family from Idaho to Utah, Oklahoma, California, Pennsylvania, Nevada and Oregon donate to, or wear custom buttons with Bogey’s little picture to help spread the word about CHD’s. I loved getting messages asking about Bogey’s condition, because that was proof information is getting out there.
So, to answer a question I was recently asked about how I was spreading CHD awareness this year, I’d have to say, “not much”. I was just overly blessed with incredible friends and family willing to share our story, and I was blessed with the sweetest little baby that has made me aware that an imperfect heart is a perfect symbol of strength.
Our lives wouldn’t mean the same without this blessing we call Pulmonary Atresia.
1 comment:
Thanks for telling others your story and spreading awareness. :)
Post a Comment