Friday, January 21, 2011

Heart talk ♥

It's been 3 years....yes, 3 years since we got the news about Lilyann. You can read about it here. But here's the condensed version. Lily was 7 weeks old and not eating at all. She cried almost all the time. We took her in thinking maybe she had some stomach issues. Her stomach was fine. It was her heart. She had a murmur. I was clueless as to what was going on..and after the appointment, I called my mom and absolutely broke down. They told me she had a hole in her heart, and they wanted to do an echo. I had no idea what any of this meant. The terms were so foreign to me.
We went to the echo at the hospital and within 24 hours we were scheduled to see a heart specialist in Dallas. It was all happening so fast. The severity of it hit me. The pediatric heart specialist educated us on Lily's condition. She had a Ventricular Septal Defect (VSD) and it was effecting her body's way of burning calories. Lily was burning them faster than her body could take them in..causing her to sleep more and eat less. She was 7 lbs 1 oz at birth and 7 weeks later she had only gained 15 oz.
After this initial visit, we were put on a once a week weight check up with Lily's pediatrician. We had concentrated her formula to offer her more calories with each swallow. Lily was still only taking in about 10 oz in a 24 hour period...for a newborn, that is not at all good.

2 1/2 months later, Lily had open heart surgery to repair the hole in her heart. Leading up to the surgery, she was hospitalized and on a feeding tube. But about 2 days after surgery, she was taking a bottle and finishing it. And now, 3 years after her diagnosis, she is a growing "always eating" little girl.

I hear heart terminology now and I am (in most cases) fully aware of what is happening and what is going on. Lily's story has helped a few mommies that I know and I'm sure many others. It is all about awareness. Coming up in February, the week of Valentine's Day, that week has been set aside for Congenital Heart Defect Awareness. People will share their stories about themselves, their kids, and others...about how CHDs have effected their lives.
CHDs are all around us...I have 2 friends that are experiencing this right now. One had a child with a CHD...thankfully, theirs is being watched and has a possibility of closing on it's own. Another is hearing all this CHD information about the baby she is carrying. I think of her daily and try to imagine how that would be...knowing as soon as your baby arrives, surgery, doctor checkups, everything will happen at once. It makes me want to be right there for her...hold her hand through each Fetal Echocardigram...just offer the hug you need when you think your world is crashing down around you.

All this comes to me as I read my facebook this morning, a new Mom-to-be "friended" me on Facebook a while ago. She was expecting a baby with a known CHD. He arrived on the 11Th of this month and earned his Angel wings yesterday during his open heart surgery. My heart goes out to this new mommy. But her son is no longer suffering, he is in a better place. My thoughts and prayers are with her and family during this difficult time.

If you have the time (which I know you do), say a little prayer for all the CHD babies, parents, families out there.

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