I’ll never forget the first time I walked into 4106 West, the room in the NICU at Riley Hospital in Indianapolis where Rick, 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.
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.
Those first weeks were such a blur. The number of people coming into our room on a daily basis was staggering – teams of doctors, nurse practitioners, social workers, case workers, custodians, lactation specialists. During morning rounds we were listening to numbers, trying to understand all these new acronyms – TPN, NPO, SVT, and what they meant for our Theo each day. We were learning to be his advocates and make sure the best decisions were being made. I was pumping breastmilk every 2-3 hours.
Our entire universe became this room. Everything happened here: 18 days of ECMO, 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.
I won’t forget the place I was standing when the nurse practitioner told us Theo had a lung condition that was incompatible with life… and the place I was sitting when a week later we were told he did NOT have that condition.
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, his heartbeat slowing from 120 to 75 to 60 to 27. His oxygenation dropping from 90 to 59 to 15. The code blue alarm, the crowd of medical personal filling our room, gathered outside our room; chest compressions; the nurse who knelt on the floor next to me and let me cling to her hand.
This is the room where I witnessed death and resurrection.
I won’t ever forget the place in this room where the doctor sat when she told us that there was nothing more to do and we just had to make Theo comfortable, hold him one last time. I remember so vividly that she cried and it meant so much to me that she cared. My heart walked through that day and those moments in such anguish. I think of it as the day that he died. I still have to remind myself that he didn’t, that he is here, beating heart and all.
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 and 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. I didn’t know what day it was or the date or sometimes even the month. It all blurred together like a centrifuge around his bed, spinning and whirling and I was just trying to hold on; hold onto him, onto 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. Where we read scripture over Theo – words containing all those promises, all those victories, the image of a Father who is only and always good. The stories of a God who loves to hear us pray and loves to answer those prayers. A God who always desires healing and wholeness.
This is the room where we sang truth over Theo. Songs from others, songs from our hearts, songs given as gifts; songs sung, songs played; songs in the quiet of the afternoon and in the moments that were filled with pain and uncomfortable procedures. I am here baby boy, and all I can give you right now is a song.
I wanted to be as close to him as possible during every painful procedure. If I could have crawled into his bed and wrapped myself around him I would have.
This tiny room held our hearts. And I often wondered what other hearts it had held; what babies had lived and died in this room? and would Theo be remembered with the ones who lived or the ones who died?
Once you leave the NICU at Riley you don’t go back. The NICU is for babies who haven’t been exposed to the world. They come here fresh from their mother’s wombs. If a baby is admitted to the ICU and they come here from the outside, they go to pediatric intensive care unit. And so our goodbye here will be final, bittersweet.
Tomorrow we will say goodbye to the nurses on the 4th floor at Riley, nurses who have wrapped us in love and the best possible care. Who have loved our son and watched him grow the first four and a half months of his life. Who have cared for him night and day, at times not knowing if he would make it to the next. Who have invested themselves in us, have opened their hearts to us.
You can’t undo any of what has happened over the past four and a half months, not in this lifetime. I wish for Theo’s sake that I could undo it all. All the pain and separation and sticks and surgeries. These months have been awful, hellish, there is no denying it, but God has met us in it. He has walked these dark days and nights with us, had shared our moments of anguish. He has met us in time and space in this room.
We have waged war in this room and you have waged it with us. And we have won.
Farewell, 4106 West.