Our Mission: To help families with children facing extended hospital stays to feel comfortable, loved, and not alone, and to build Congenital Heart Defect awareness and compassion.
Gabriel was born June 4, 2011. He had my dark nearly black eyes, lashes too beautiful for any boy, the longest tiniest fingers, and a natural mowhawk. He was perfect. But at 12 hours old, he was diagnosed with TOF, complete pulmonary atresia, MAPCAS, VSD, aortic stenosis, and "spongeaform" heart tissue. Thus started our crash course into pediatric cardiology and life in the hospital.
Gabriel spent a wonderful month at home with us from 10 days to 5 weeks old before he was readmitted in heart failure to prep for a surgery with only a 10-20% survival chance. Gabe wasn't one for odds though, and he blew through surgery with little problem, even skipping the "guaranteed 100% chance he'll come out of the OR on ECMO." We spent 5 total months inpatient at Vanderbilt Nashville, much of it dealing with "mundane" and frustrating issues like collapsed lungs, fevers, and feeding problems. Some days were awful, but some days Gabriel was a happy, normal baby who happened to be stuck in a hospital. We were there 151 days. He had 6 surgeries, including a pacemaker and a Nissen/Mickey. We moved rooms 21 times. I drove over 70 miles a day to and from the hospital trying to keep some normalcy for our 4 yr old, and maintaining a full-time job. I backlogged 1500oz of pumped breast milk, as he spent so much time off feeds. The cafeteria had my breakfast order memorized and recognized my voice. I was on a first name basis with stress, reached my wits' end around 4 months in, and I cried in front of a social worker more than once. When we were admitted there were 4th of July decorations on the walls. We watched Summer fade to Fall and pass in to Winter. When we finally left, there was a Christmas tree in the lobby.
I will never be able to describe to someone who has not been there, the feeling of elated terror walking out of the hospital carrying your baby after so many months inpatient. I'll also never be able to describe the numbness and horror of the ER attending calling "7 o'clock" only 3 days later, after sudden heart failure, or how it feels to hand your son's body to the crying nurse and leave a hospital permanently empty armed. I am blessed with incredible and amazing memories of my son, and simultaneously cursed with memories no parent should have.
People have asked me if I never want to see the inside of a hospital again, but the truth is, I miss it. Almost all of my memories of my son are from in the hospital, and regardless of the circumstances surrounding them, the memories themselves are priceless. I visit my son's grave, but I don't feel him there; I just feel empty. But I can step foot into any children's hospital and immediately feel at home, as if that's where Gabriel's spirit resides.
I read recently that CHDs are contagious - because parents are left with the broken hearts, and I agree, but I remember a plea I made over my son's hospital bed on his worst days. If I could take his place I would. Let it be me and not him. I remind myself that his heart no longer pains him, and instead I took his broken heart and his burden for him.
There is no word, like widow or orphan, to describe a parent who has lost a child. The closest word I've been able to come up with is "incomplete." My life will forever be incomplete without Gabriel, but my broken heart is filled with love, and memories, albeit fading, of a beautiful little boy who quickly and quietly impacted and changed my life more in 6 months than most could in 100 years. I would give anything to not carry this pain - anything except for the sweet memories of my Gabriel.
In Gabriel's memory, Heart on a String loves, comforts, and provides support for families like ours. During our worst and hardest trials, our friends, family, and complete strangers showed up to support us. We can never repay their favors directly, so we choose to pay it forward through Heart on a String.
Heart On A String is a 501(c)3 tax-deductible non-profit organization and an AZ tax rebate Qualifying Organization. Please request a receipt for tax purposes and consult a tax professional.