Sorry for the blog hiatus...but I'm gonna jump back on the blogging train and not get off at the next stop. I am hoping to do more than 1 post each week...but we will see if the children allow.
Getting used to getting up every hour is somewhat exhausting. And head cold on top of that...super exhausting.
Congenital Heart Defect Awareness week is almost over and I have yet to make a post here on the blog...so here it goes.
Y'all remember Lily, my middle child, right?
She is my Heart baby. She was born with a Ventricular Septal Defect (a hole in her heart)...we didn't know this until she was 7 weeks old. It was effected her growth. She had no energy to eat resulting in an NG tube being put in around 11-12 wks old. At 18 weeks old (4 1/2 months), Lily had open heart surgery to repair her VSD. It was a 5 hour surgery...and truly the longest 5 hours of my life. Emotions were all over the place that day. When the surgeon came back to talk with us and tell us all he did and how Lily did, I was just eager to see my little girl...and then the doors opened. A team of nurses, the anesthesiologist, and security were there with her. She was covered with tubes and wires. And there was plastic covering her entire body. It was something I wish no other parent has to EVER see. That's when every emotion hit me. I was sobbing...partly of fear of the unknown, seeing my baby in that condition, and also tears of joy knowing that she had pulled through. She was off the heart/lung bypass machine. She was on the road to recovery. It's hard to just give her little one over to an almost complete stranger and pray they do what is best for them.
Though I wish for this to never happen to any other baby, child, teen, or adult. It still does.
- About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect in the United States (approx. 40,000/year)
- Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects
- Congenital Heart Defects are the #1 birth defect worldwide
Here is Lily a few weeks before surgery. She was hospitalized for Failure to Thrive and at the same time had her NG tube put in. It was almost 2 weeks in the hospital for this. She got RSV while there :(
This is what was wrong with Lily's heart...This condition (VSD) caused her body to work harder at burning calories...which in turn caused her to NOT gain weight. Her heart became enlarged and there was fluid around her heart as well. All this results in other problems as well.
And here's my Sweet Lily now...4 years old and almost 4 years post surgery (April 15th is her surgery anniversary)
Not every story is miraculous as ours...but with research and raising awareness maybe one day they ALL will be.
So, for this Monday, It truly makes my Monday to have a heart healthy children.
Linking up with Cheryl from Twinfatuation for Makes My Monday.