Heading into work the other day, I walked past a group of people gathered in a small circle just outside the entrance of the NICU. Another Labor & Delivery tour in progress. I know this because most of the ladies in the group are visibly pregnant and because I hear their tour guide explain that behind that door is the Neonatal Intensive Care Unit, where if a problem with their baby should arise, they will receive the very best of care. As I swipe my badge to open the door and enter the unit, I see out of the corner of my eye the expectant parents lean forward a little to get a peek of what exactly is behind that door. Some rest their hands protectively over their pregnant bellies as if to somehow keep their babies out of there.
I smile to myself because I get it. I did exactly the same thing while on a Labor & Delivery tour of the hospital where I was planning on having my baby girl, Hollie. I was definitely curious as to what was behind that door but the last place I would want my baby to be was behind that door.
Then I discovered my passion, working as a Neonatal Intensive Care Registered Nurse in that very unit. It really is, to me, the best job ever. A job that no one close to me has ever completely understood unless they found themselves in there, behind that NICU door. I have done this job long enough to know this to be true with my closest of friends, my darling husband, my children, my family. Unless one works there or has sat vigil beside the isolette of a sick, tiny, fragile human they don’t know what I do behind that NICU door. Nor do they understand truly what my son’s life was like behind that NICU door…or his parents’ lives…or his sisters lives. They have no clue of the rush of adrenaline and trepidation I feel when I get the assignment that is listed as “23-24 weeker”. Nor do they understand the helplessness Bill and I felt the night my water broke 14 weeks too soon while I was pregnant with Jodie as the neonatologist on duty came in to talk to us (to Bill) about the very real possibility that our baby would be admitted into the NICU and all the potential complications and disabilities she would face. It’s scary stuff no one understands unless they spend any length of time behind that door.
“Check out NPR’s Radio Lab this Sunday.” was the message I received. Curious, I do. You should too…if you really want to understand what it is that I do…what I have been doing since 1990 when I started my career working in one of the 500 hospitals in North America, Europe, and Japan that had been enrolled in clinical trials of different surfactant replacements, many of which also gained FDA approval.Or maybe you wonder what it is really like to be a parent of a tiny human born at the cusp of viability…a baby who is more fetus-like than newborn baby-like. The story that belongs to Kelley Benham, Tom French and little Juniper is not new to me. I read Kelley’s three-part series, Never Let Go several months ago thanks to a posting shared in the Micropreemie Parents Facebook group I help moderate.
I certainly can imagine all that Kelley and Tom went through as the mother of my own micropreemie. Bill and I too have jumped at that middle of the night call telling us we need to come to the hospital now. Our family learned to accept and understand Daniel’s real age and his adjusted age. And we celebrated too that day we were able to disconnect Daniel from all the monitors and remove all the wires and took home our baby boy.
I also know too well how hard it was for Tracy, Juniper’s primary nurse, to take on the responsibility to be her primary nurse. I totally get why she worked overtime, not wanting to leave Baby Juniper when she clearly was going to die. Like Tracy I also enjoyed many conversations with the babies I have cared for and their parents. I also have enjoyed dressing up “my babies” and taking pictures of them to share with their mommies and daddies the things we did together in the middle of the night when the rest of the world slept. I’ve listened to mommies sing hymns, sweet lullabyes and even Guns n Roses “Sweet Child of Mine“and daddies read countless stories while keeping watch over their tiny ones whom they could not hold. I’ve fallen in love with many of these babies and their families…yeah, I fell completely in love with one whom I now call son too.
While I would never, ever want to experience the absolute fear that I had the night my water broke much too soon while pregnant with Jodie, I am thankful that it did happen. Thankful? Yes, so very thankful. It is because of that Bill went behind that NICU door as a parent to see where his baby might end up and listened to the doctor discuss percentages, potential outcomes and disabilities. That NICU tour and discussion Bill shared with the doctor on duty prepared him, prepared both of us to be parents for a baby born on the edge of viability with pretty much most odds against him. Only days old, when Daniel precariously clung to life, needing emergency open heart surgery, Bill declared that the tiny patient I fell in love with who was all alone needed a father, needed a mother, needed a family and we should be that for him. If that was Jodie wouldn’t we be doing just that regardless of the overwhelming odds that she would have died or be profoundly disabled or moderately disabled, he argued. Yes. Yes we would and so we did just that for Daniel as parents who end up behind the NICU door do.
Check out Radiolab’s 23 Weeks 6 Days