Theo's NICU Room: A Holy, Sacred Place
March 27, 2017
Topics: Riley Kid Story
I’ll never forget the first time I walked into 4106 West, the room in the NICU at Riley Hospital for Children where my husband Rick, my newborn son Theo and I would spend the next four and a half months of our lives–138 days. That first night is cemented into my mind, the images of Theo hooked up to so many machines and wires and IVs that I could hardly see his broken little body.
That night I could not have imagined all that this room would hold.
Theo was airlifted to Riley from South Bend just a few days into his life. He was a bit of a medical mystery, and Riley’s specialists ultimately discovered several health problems that may or may not be related, including a condition called supraventricular tachycardia (SVT) that causes very highheartrate, a ligated PDA (patent ductus arteriosis), and a rare lung disorder known as pulmonary interstitial glycogenosis.
I didn’t know that first night that this would be the room where we would receive the worst news and the best news; where we would meet the nurses, nurse practitioners, respiratory therapists and doctors who are God’s hands on this earth; where we would weep for what everyone thought would be our last day with Theo; where we would witness a miracle; where I would learn to be Theo’s mother, learn courage, learn to be a warrior.
Our entire universe became this room. Everything happened here: 18 days of ECMO (heart-lung bypass), multiple PICC lines, a heart surgery (yes, IN this room!), an abdominal surgery, bronchoscopes, too many X-rays to count. This room held it all. Dr. Rescorla, Dr. Turrentine, Dr. Marshalleck, Dr. Lorant, Dr. Montgomery, Dr. Ayers, Dr. Kean—these names and so many others became to my husband and I the names of heroes.
I won’t forget the spot on the floor in the corner of the room where I lay in a crumpled heap, begging God to save Theo as he coded. “Have mercy, oh God,” I begged, as his heartbeat slowed from 120 to 75 to 60 to 27. The code blue alarm sounded, a crowd of medical personal filled our room, and the charge nurse, Shellie, knelt on the floor next to me and let me cling to her hand.
On those death days I would sit next to his bed all day. I would tell him about what our life was going to be like: that it was going to be his job to chase the bunnies from the garden; that he had to help me pick strawberries; and that summers in northern Indiana are the best. I would whisper to him that he couldn’t leave me—that I needed him and he must fight to stay with us.
The days and events blurred together like a centrifuge around his bed, spinning and whirling and I was just trying to hold on: to him and to my heart.
This is the room where we waged war for Theo’s life; where we prayed over his body and spoke LIFE to his spirit. This is the room where we sang truth over Theo—songs from others, songs from our hearts, songs given as gifts: “I am here baby boy, and all I can give you right now is a song.”
This tiny room held our hearts. And so our goodbye was bittersweet. Our NICU room at Riley became a sacred, holy place. It’s were we walked through fire, through the dark valley, and we have been changed.
We have waged war in this room and so many have waged it with us. And we have won.
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