Since hearing of Lily's heart diagnosis, anything heart related is near and dear to our hearts ♥ I like to help make others aware because I remember when it happened to us. I seriously had no idea about heart problems with babies.
I like to think that spreading awareness and sharing our story has helped other moms, heart families, and extended families of heart patient. I am so thankful for the one mom that I reached out to. She could have tossed my email aside and gone on with life. But her help was incredible. She was a mom of twin boys born on Christmas Day (25 days after Lilyann). One was born heart healthy and the other was born with a Ventricular Septal Defect. His required open heart surgery. And he had surgery before Lilyann. It was amazing to see the difference between a heart baby and healthy heart baby born on the same day. This momma shared her story with me and answered any question I had...no matter how off the wall it was. I never met her in person, but her sharing made the task of open heart surgery just a bit easier. (Crazy, huh?!) I know, how can I say open heart surgery was easier to bear?
surgeon talking with us after Lily's surgery
We were in the hallway after talking with the surgeon and the wheeled Lily passed us to head up to the PICU. I remember this moment...all emotions surfaced. I just wanted to hold her. I remember turning into Jed and just crying.
I was Aware! I knew what to do expect. I knew there was going to be tears. I knew there was going to some very special nurses and doctors working with MY baby. I knew God was on our side. Each parent deals with it's own emotion. No emotion is the same.
This momma shared her before and after pictures of the surgery. She shared a pic of the PICU room. She shared it all. She made me Aware. Now, I know that not every heart story is the same; but it helped to have someone who had "been there, done that" walk me through it.
I hope that by sharing our story, it is making other people aware.