Congenital Heart Defect Awareness Week

February 7th  - 11th  is Congenital Heart Defect Awareness Week! 

When Maddison was born with Hypo Plastic Left Heart Syndrome we had never heard of this before and we never pictured or even thought our first born would have a CHD.  Maddison's CHD was not diagnosed before birth so we were not able to plan and read up on everything until after she was born.  Boy did we quickly learn!  When you think your child's birth went as planned, only she was a "little early" and would need to stay in the NICU for the night just so they could keep and eye on her and she would be in my room the next morning.  Well, little did we know but a team of several doctors was headed to our room.  There was a knock on the door - we thought, this is it - they are bringing her to the room.  I can't wait to see her and can't wait to hold her.  That wasn't the case.  It was 3 doctors - all I heard from them was "Mrs. Feaster, your child has been diagnosed with Hypo Plastic Left Heart Syndrom.  MUSC is on the way - we aren't sure if she will be air lifted or taken by ambulance but they are on the way.  That was it.  The door closed.  What, I couldn't even process it all.  She had what?  What is that?  How did she get that?  What does this mean?

Hypo Plastic Left Heart Syndrome means the left side of the heart never formed.  Maddison never had the left side.  She had the right side which worked off of me and is the reason why it wasn't caught early on and the fact that the 4D ultra sounds were not out yet.  She never showed distress and I had no problems during my pregnancy.  HLHS requires a series of 3 surgeries - the first at a few days old and the others shortly after and/or the possibility of having a heart transplant.  Talk about being stopped in your tracks - well, that was us.    Maddison was whisked away to MUSC where she was evaluated and awaited her first surgery which she had at 7 days old.  We quickly learned everything there is to know about having a sweet, precious baby with a broken heart.  Below was her home away from home at MUSC:

So, join us in helping celebrate CHD awareness week.  Please consider donating blood or even becoming an organ donor.  Whatever you do can help the lives of precious babies like Maddison.  Below are some interesting facts about CHD:

*  One in every 125 babies is born with a CHD
*  CHD is the #1 birth defect in America
*  Nearly twice as many children die from CHD in the US each year as from all forms of childhood cancers

 Although we only had Maddison for 19 short days we still celebrate her life.  We love hearts and anything and everything that has a heart on it - well, you can bet I have it.  Hearts mean more to me than you can imagine.  Its not just some piece of plastic or something red drawn on paper.  Its not just a piece of jewelry that has a heart cut out of it.  Its so much more.  It's my little girl.  Maddison would be proud to know that she has a little brother who did not have the chance to meet her but loves her so much.  He is so proud to tell anyone and everyone that he has a "little sister" and she lives in Heaven and one day he is going to play with her.  Peyton loves to go and visit his little sister and he loves to take her a special hot wheel that he has picked out. 

HE HAS MADE EVERYTHING BEAUTFIL IN ITS TIME.

ECCLESIASTES 3:11