CHD Blog : www.One in 1 Hundred.: Somewhere Over the Rainbow

WHAT'S IN A NAME

The One in 1 Hundred comes from the statistic – the number of babies born with a congenital heart defect every year. When you are pregnant you hear a lot of statistics and they don’t really hold any true meaning to you personally until you become that 1 out of 100 and your life is forever changed. Once you are that 1, I don’t think you ever look at statistics quite the same again. Kalvin has not only touched my heart, he has kissed my soul. He has changed me for the better in ways I didn't know existed and for that I am truly blessed. I tried to explain this to a pregnant heart mom and I don't think she quite understood until her heart baby touched her very own soul. Here in this blog, I will try and share with you all our experiences and it is my hope that they will help and or provide you with some comfort. Thank you for listening.

In February is Congenital Heart Awareness Week - help spread the word until every baby is screened for congenital heart defects and every baby with a congenital heart defect survives and thrives.

OUR MIRACLES

Kalvin was born with d-transposition of the great arteries (TGA), VSD, Coarctation of the Aorta (COA), pulmonary stenosis. Kalvin underwent 8 hours of by-pass surgery to correct his defects when he was 5 days old at Children's Hospital Boston. Kalvin has had two catheterizations to correcton his COA; one at 3 months old and another at 9 months old. The first one was unsuccessful and resulted in a damaged femoral artery in his left leg. His second catheterization was a success! As a result of his damaged femoral artery, his left leg is now about 1 cm shorter than his right and also has less muscle mass. Kalvin has received PT since he was 4 years old to help his coordination and OT to help his delayed fine motor skills. Kalvin also suffers from anxiety and has from a very young age. Kalvin is a well adjusted happy boy who doesn't slow down. He loves boating, beaches, baseball (Red Sox & Indians), football (OSU & Patriots), hockey (Rangers & Bruins), soccer and dancing to music. Kalvin is extremely active participating in baseball, soccer, karate, swimming, skiing, skating and piano lessons. The role Kalvin takes most seriously is that of a big brother. When Kalvin was five years old we were finally blessed with another baby boy, Finn (heart healthy). Finn is a miracle all his own. Finn is full of spunk and makes us all laugh on a daily basis. Kalvin is always looking out for Finn and trying to engage him in play. They are truly the best "medicine" for each other.

Thanks for Stopping by

Most that know me, know I love to talk about my children and most know that Kalvin, my 7 year old, had heart surgery when he was a baby, but that is probably all they know about Kalvin's heart. Once Kalvin entered school, I found myself explaining to the teachers and administrators that Kalvin's struggles were most likely a result of 8 hours of bypass surgery at 5 days old. Recently, I was introduced to some other "heart moms" and we began sharing stories and I found myself reliving Kalvin's surgery and all the experiences that came with it. It was amazing to me how far back in my mind I had actually tucked away many of the experiences, but how easily someone else's words could transport me instantly back to a certain place and time. I found it somewhat comforting to share the stories and relive the experiences and it seemed to help the other "heart moms" as well. I was sharing information, links, and pictures I had gathered and thought, "Why not put this all in one location and maybe help some families that I dont know or haven't met yet." And thus began One in 1 Hundred.

WHAT'S IN A NAME

Pages

Somewhere Over the Rainbow

No comments:

Post a Comment

Followers