The NICU is Not For Mothers
By Alyssa Nutile
A low hum, punctuated by the shuffling of nurse clogs and occasional louds beeps from the O2 monitor, reverberates through the room. I whisper a lullaby to my daughter Gemma as she sleeps on my chest. Another baby cries — the noise is shrill and piercing. If I were to make a soundtrack titled “Neonatal Intensive Care Unit,” this would be it. After three weeks, this soundtrack is embedded in my brain, playing even when I’m not in this room.
The nursery pod across the hall gets some ambient sunlight through glazed windows, so they can have the grounding effect of daylight shifts. But not our pod. Our windows have the shades pulled, and they only face out into a sterile white hallway anyway. Still, no amount of earthly treasure could convince me to trade.
In that brighter pod with windows and sunlight are two babies who might never go home. They’ve lived in this NICU for almost a year now. At least once a week, one of them suffers a respiratory or cardiac episode, and alarms sound. Nurses and doctors rush to their bedside to help the in whatever way they can. They suction and push rescue meds and massage and reposition and reintubate. But there are limits to modern medicine, even in this state-of-the-art, world-renowned hospital. At least in our pod, we still feel some measure of calm.
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They tried to move us across the hall once. My mother and I came back from a walk and lunch, an increasingly rare luxury for a parent who spends their waking hours in the orange medical glow of the NICU. We started toward our pod, and our favorite nurse stopped us.
“They moved her.” She says this with a disapproving look. “You can ask for her to be moved back.”
She means “back to my pod,” because this nurse has watched over my daughter from her very first week. She has cared for my daughter with an intensity that has yet to be matched by any other medical professional we have encountered. But she isn’t officially on Gemma’s primary team, so my daughter was moved.
They moved her across the hall to the nursery with the two critically ill babies. Babies whose mothers used to sit with them every day. For months, they sat with their daughters, but almost a year later, they have been called back to work and to life and to their other children. One comes back to visit her daughter every evening. The other, I have not seen in two weeks.
I know this because I sit here by my daughter’s bedside every day, from the opening of visiting hours until just before visitation ends. I see all the parents who pass through. I hear their hushed voices as they speak to doctors and sing to their babies. I give them a knowing look when they glance over to our corner of the nursery. I do not know their names, only the names of their children that are posted above each bassinet. I don’t have the capacity to ask their names yet. I struggle so deeply to even ground myself here. I am barely keeping my head above water. I do not have any energy to give to someone else.
And since I sit here every day, I want to be with our nurse, the one who cares for my daughter, and for me, so lovingly. The one who has come to work in the NICU every day for decades now and hasn’t lost one bit of compassion or force in caring for the smallest and most vulnerable of us. The one who is familiar to me, a little speck of stability that I can hang on to in this place. I do not want to be in the room with constant crashes and alarms. I already hear the alarms in my sleep. I start to shake a bit walking back in to the nursery every morning. I cannot sit for twelve hours a day in a room that feels so devoid of hope.
My mother is her own force. For over three decades, she was a nurse. She knows how to speak to these women. She knows how to navigate this foreign world of hospital bureaucracy. She finds the nurse manager. A few hours later, Gemma moves back to our favorite nurse’s pod. The nurse manager is irritated. Right now, I am the only parent who sits in this NICU all day. Usually, there is no one here to question this manager’s decisions about placement of the babies. I have upset her normal order.
And I wonder, why am I the only one? Surely these other mothers and parents love their babies too. Surely they have more time to spend in this place. Where are the other mothers? What keeps them away?
Some of the nurses lament the infrequency of visits from some of the parents. But so far, I am more empathetic. This NICU is home to multiple babies with long tenure. Their parents have to return to work to keep their healthcare and afford their rent. Some parents live hours away. Some are just trying to regain any shred of a normal life: one blown-up by the medical needs of their sick infant. There is no course to prepare parents for what it feels like to return home from the hospital without your baby. There is no description that can adequately capture how wrong the world feels when you are healthy, and your child is seriously ill. Sitting here for several weeks has already taken its toll on me. As the months drag on, I can only imagine how the wounds deepen and fester.
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The doctor comes in for rounds. Every two weeks, there is a new attending on duty. For our first two weeks, our attending was so attentive and deeply invested in Gemma’s success and ours as parents. He gave us his phone number for questions after our daughter’s initial, terrifying diagnosis. He told us we could take care of her, and that the quality of her life, no matter her diagnosis, was deeply linked to us as parents. He told us not to be afraid.
But his rotation is over. This week, the new attending is starting, and he is much more methodical and much less empathetic. Instead of rounding by the bedside of each baby, he rounds in the hall with the doors closed. I am invited to come out and listen when it is Gemma’s turn, but he does not stand at her side and watch her as the nurses and other practitioners report. I understand his reasoning. In this fifteen-by-twenty-foot pod with four babies, it is impossible for him to speak quietly enough to keep me from overhearing bits of information on the other occupants. Still, the distance is felt, and the implication is understood. I’m not really supposed to be here.
In the coming weeks, this doctor and our earlier attending will disagree on the best course of action for my Gemma. They will spar over her increasingly complex symptoms. They will undermine each other, one for the benefit of my daughter, the other, for the sake of his own ego.
Perhaps that is uncharitable. I don’t know this second doctor personally. I have never spoken to him to ask about his motivations. I only know that my daughter, unaware though she is, will be caught in the middle. And I, the parent who is always here in this inhuman, sterile place, will be subjected to watching the politics of medicine play out at the expense of my own stability. Politics that usually occur invisibly with only nurses and aides to witness. Except this time, when I will be dragged in to the center of it.
This place is not made for mothers. This place, which keeps our sick babies alive and growing and recovering, inflicts upon me the type of torture that I will spend years recovering from. This place, despite its best effort to the contrary, heals our babies and wounds our souls.
ALYSSA NUTILE is an artist, writer, mother of two, and advocate living on the shores of Lake Erie in Erie, Pennsylvania. Her daughter Gemma has a debilitating genetic disease, and Alyssa’s work focuses on the emotional, mental, and physical realities of loving, parenting, and advocating for a medically complex child. She’s currently writing a graphic memoir about her pregnancy and first year of life with Gemma. You can see more of her writing and artwork at AlyssaNutile.com and follow our daily life on Instagram @alyssanewt.