Life as a Heart Mom

I am a Heart Mom. Most of you reading this have no idea what that means. A few of you know all too well. Ellie was born with only half of a functioning heart. It sounds surreal and I could type all this medical mumbo jumbo to clearly define what her heart structure is, but when you get down to it - she only has half of a heart.  She isn't sick. She isn't a "poor thing." Her life doesn't suck. It's just how she was born.

For many months before her birth and for a couple of years after it I was consumed by this new world I was a part of.  I needed these other "heart mom's." I needed answers. I needed someone to tell me they knew exactly what it was I was feeling. Hubs knew a lot of what it was. He felt the pain. He suffered through the agonizing time in the hospital. The touch and go moments we had after each of the surgeries. Still, he didn't grow this precious life with half a heart in his own body. There are many questions, and a certain amount of guilt even, that I will always have because I was the one that carried her and nobody can tell me why her heart didn't develop correctly.

My first heart mom friend Erika, added me to a group on Facebook called "Heart Mamas."  I looked around and didn't get the same sinking feeling that I used to get at any "heart" mention.  During the first three years of Ellie's life I got very attached to a few heart families.  I read blogs and carepages. Sent messages of support even a few of condolence. It made me anxious, scared and stressed all the time! So I pulled away. There are three families that I will always keep in touch with. Erika and her family are friends for life. We exchanged numerous emails shortly after we both received our diagnosis. We met in person for the first time with our husbands while we waddled around the Children's Hospital one day after fetal cardiology appointments.  To this day, today even, we contact each other if we need to be reassured that there is a least one person out there that gets how we're feeling. The other is a family from New Orleans whose daughter was six months old and just had her Glenn when Chris and I toured the CICU at Children's.  It was the first HLHS family we spoke with in person who had gone through it. Hannah's mom took the time to talk to us, reassure us and let us gaze at her perfect baby who was doing so well. Hannah was my sign of hope.  That was a huge moment for me because Hubs and I had just been shown what a baby looks like with their chest open post Norwood.  The third family is the Pandya's. We met in the CICU. Their son doesn't have HLHS, but needed a surgery right after he was born.  This time around, our child was the one shown to prepare another family for what their baby would look like post surgery, if anyone can really prepare for that.  

This post isn't really going where I intended it to.  My original reason for starting to type out my thoughts was because I wanted to remember how happy I am that Ellie's fifth birthday is right around the corner. We've made it! When we were preparing for her birth all of the doctors and research said most babies who aren't going to make it don't see their fifth birthday.  For some reason five has stuck in my head as the magic number. We've made it to the other side.  We've done all we can do. Ellie is destined for great things no doubt.  I think I am ready to branch out into the larger heart community once again. To give back and pay it forward for all of the love and support we got in the beginning. I am a veteran heart mom with an (almost) five year old after all!

For anyone new to Ellie's story that wants to learn more about our journey, I chronicled it all for our family and friends at the time on www.carepages.com search for page name EllieAdams (one word).