Two years ago today was Diagnosis Day (or D-Day). Eve was 48 hours old. We thought the murmur was innocent and the echo was just a precaution. An hour later, a cardiologist was standing in the doorway telling us something was wrong with our baby’s heart and they needed to transport her to a NICU at another hospital…. Our world changed on December 14, 2008.
The only thing we knew is that we didn’t know anything. Paul drove in a blizzard to the University of Minnesota Amplatz Children’s Hospital. I stayed behind. My stomach had been cut open two days earlier, but I packed my bags and the clothes Eve was meant to come home from the hospital in, and set them by the door. We didn’t call our family, but did call the people we knew in cardiology and pediatrics….friends of ours who surely would know more than we did. Still, there was little to go on. It was midnight before Paul could call and share what he was hearing from the team in the NICU. But what they were saying wasn’t good. Pulmonary hypertension of the newborn. Don’t Google it. Severe mitral valve regurgitation. Enlarged heart, displaced kidneys, liver.
I tried to rest. But the other babies were tucked in their bassinets, crying their newborn cries for the moms that were right next to them. Where was my baby? It took everything in me to stay put until the OB/GYN rounded in the morning. He tripped over my bags on his way in. “Leaving so soon?…you really should stay another day to recover.” Yeah. Don’t think so. Here’s what I need: discharge papers signed, pain medication prescriptions called over the the U of M Pharmacy, and a taxi waiting downstairs in the next 15 minutes to take me to my baby. What could he say?
The follow up to D-Day continues…to this day. There were the darkest of days – and days of pure bliss. And now, milestones. Somehow the “first everythings” seem sweeter now. We remind ourselves that every day is D-Day for 110 more babies and their families. It would be weeks later before I knew 1in100 babies were born with this most common birth defect. CHD requires a damn good fight. It’s time for the victories to outnumber the defeats.