By Guest Blogger Molly Kramer

March 18, 2012. Nearly 38 weeks pregnant with our second child, I was frantically packing the hospital bag that I had been putting off for weeks. Contractions had started in the middle of the night and by morning, my nervous jitters had escalated into full-blown panic even though nothing was out of the ordinary. After bags were packed and laundry was finished, we left for Women’s Hospital. Shortly after arriving, my anxiety began to ease. We were at the hospital. We were safe. We were about to meet our beautiful baby girl.

We were taken to our room and made small talk with our nurse as she positioned the contraction and heartbeat monitors on my stomach. Contraction wave forms appeared immediately, but the heartbeat monitor was met with silence. “Is there a different place on your stomach where you can usually find her heartbeat?” I shook my head no. After a few more moments, she announced that she was going to find another fetal doppler. Surely that was the problem. But as the piercing silence continued with the new monitor, Keith and I noticed the fearful look in her eyes. Before we had the chance to process anything, a portable ultrasound machine was rolled into our room and the frantic search for movement began. As tears began to fall, those life-changing words were uttered – “we can’t find a heartbeat.”

No amount of preparation could have prepared me for what came next. Just hours after arriving at the hospital, Eden Elizabeth made her entrance. I clung to her lifeless body, running my fingers through her tiny curls and stroking her sweet little nose. We held her until the middle of the night, when we said our goodbyes and handed her away. Heartbroken, I found myself wailing the same phrase over and over again throughout the night. “How is this fair? This isn’t fair!”

Fast forward twelve long, emotionally trying months. We decided that we were ready to welcome another child into our hearts and lives. One year, 100 negative pregnancy tests (excessive, I know), and countless mumbles about the injustices of the world/my womb later, we learned we were expecting in April 2014. We remained cautiously optimistic, but after numerous appointments and ultrasounds, we felt like we could breathe. That feeling didn’t last long – at 31 weeks, new abnormalities were discovered and our unborn son was diagnosed with a rare and often lethal form of dwarfism called Campomelic Dysplasia.

drewWe were given the worst possible scenarios, but remained hopeful. On December 10, 2014, Drew Finley came into the world fighting for his life. He underwent a tracheostomy at 12 days old and was put on ventilatory support. He has been through so much, but his journey is far from over.

I began writing this post while Drew was being observed overnight at Brenner Children’s Hospital for a sudden onset of seizures. Just days later, he was taken back via ambulance after an especially rough episode at home. Hours after arriving, we watched in horror as our sweet little guy went into full asystolic cardiac arrest. We stood frozen as dozens of doctors and nurses yelled orders, delivered rounds of epinephrine, and performed chest compressions for what seemed like hours. Even as everyone let out gasps of relief when lines appeared back on the heart rate monitor, I caught my mind slipping back to that same phrase. I just watched my 6-month-old son die. He died. Sure, he came back to life minutes later, but HE DIED. How is this happening to us? To our baby? Not. Fair.

I’m finishing this post nearly a week after his cardiac arrest. Not only is he awake and responsive, which is a miracle in and of itself, he is radiating joy. Flirting with the nurses and proudly shrieking and babbling every chance he gets. Yet, our hearts are heavy. Today, we made the decision to discharge Drew with hospice status. Drew will die at home. It may be days, it may be weeks, or (God willing) it may be months or years. But having the knowledge that we are going to lose another child is unbearable and (can you guess where I’m going with this?) totally unfair.

But you know what? I never could have imagined this life. It’s not what I ever would have asked for. But I love it. I love everything about it. I love that I was chosen to carry Eden for nearly 38 weeks. I love the connections I’ve made through being part of this heartbreaking, but beautifully meaningful community of mothers. I am absolutely honored that I was chosen to be Drew’s mama, caregiver, and biggest fan. And I am blessed that when his precious body starts to fail, I will be the one to hold him in my arms and love him until the very end. This life might not always be fair, but it will always be worth it.


You can read more about Molly and her family in our recent Main Street Moms on the Move feature here. In addition, you can follow Drew’s journey on Facebook here.