Category: premature birth

Every other week for the past eight months, H and I have taken the elevator from the parking garage to the main lobby of the hospital where he was born. Every other week, we have walked through the lobby to reach a second bank of elevators. There used to be a dome in the lobby’s ceiling where we would pause for a moment to hear our whispers amplified and ricocheting in space as others strode purposefully around us. In that spot now stands the information desk, above which hangs, from the patched over dome, a Calder-esque mobile that looks blue, purple, pink, or some blend of those colors depending on where you stand in relation to it. The gift shop, which we pass on our right, has also received a makeover. It may be more open to the lobby now, although I am not sure, having never paid it much heed before. Predating these changes, but not our visits to the hospital, is a Starbucks where we sometimes stop for a treat on our way home. Much has changed in eight months.

Our return trips to the hospital started 21 months after H was born, 19 and 1/2 months after he came home for the first time after his birth. Every other week, we have returned to the hospital for physical therapy to support his gross motor development. After passing through the lobby, we have taken an elevator from the second bank to the sixth floor and headed west, and every other week, I have paused at the first T in the corridor and looked left before we turn right. At the end of that hall, in the opposite direction from Pediatric Therapy Services and visible from where we stand, is the NICU. Hidden somewhere in the labyrinth of wings and corridors in the direction of the NICU is the postpartum room where I spent two nights before being discharged without my baby. As we make our way to playing with H’s therapists, it is impossible not to think about the circumstances under which H was born and spent his first 41 days.

Recently, we have stepped up to twice a week visits: weekly physical therapy for gross motor support and weekly occupational therapy to keep a watchful eye on sensory issues that might hinder play and learning. The unintended consequence of this added support for H’s development is that my encounters with the NICU and the flood of memories and feelings that follow have quadrupled. Perhaps because of this or perhaps because the time just seemed right, I found myself one day explaining to H that we had been in this place before, much before we started coming to play with Kathryn and Cameron.

“We’re almost to Kathryn,” I told H. “If we went the other way, we would be going to the NICU. That’s where mama and H were for a while after you were born, when you were little little.”

H’s gazed followed my pointed finger. I could tell that he was taking this in, perhaps not quite sure what it really meant, but incorporating it into his understanding of the world as best he could anyway.

We often stop at the T in the corridor now and talk about the NICU and our early days together. It has been a part of my story for the past 28 months, and it will always be part of his. It is worth acknowledging and honoring with conversation and explanation, with words and with silent pauses that allow us to reflect together on where we’ve been. It is his birth story: You were born early. We were here, in this place. Mama had to go home while you stayed. Mama was with you as much as she could be, all the time, except when she was eating or sleeping. You were always in mama’s heart, as you always will be. Our conversations about his birth and our time in the NICU allow him to weave new words into the story of his existence, creating a beautiful tapestry of where he has been, who he is, and who he is becoming. It was an indescribably hard time, but from it beautiful things have grown. No mud, no lotus. We need to talk about the mud just as much as we need to talk about the lotus.

H has since brought up the NICU twice in other contexts, once when I referred to his hands as little little and once seemingly out of the blue. He has once requested to go left where we usually turn right, and we talked to the nurse stationed at the NICU’s front desk. H watched the NICU doors open to admit a young mother, and I described to him how I used to scrub my hands and arms each time I went through those same doors to see him. I pointed out, through the windows behind the reception desk, the room he was in and talked about how his isolette was last in his row, near the windows. Then we went to play with Cameron. I have a suspicion that it will not be our only visit to the NICU.

I can talk about and visit the NICU with much more ease now than I could when H was a newborn. I can still feel achingly sad when I think about the experience, and talking about it can bring tears to the surface easily. But the pain is not so raw, the wounds not so tender, because I’ve had the space and time to process and grieve the unexpected experience of H’s preterm birth and all that followed. I know I will never be done grieving it, but now I know that the grieving is survivable and that it can sit comfortably alongside all there is to celebrate about H’s existence . It feels good to be able to touch the experience without so much charge and pain and to have the mental and emotional space needed to help H understand that time in our lives. I couldn’t have done it then, but I can now. Much has changed in the last 28 months, and it’s not just the hospital. I’ve changed, too.

No mud, no lotus. We need to talk about the mud just as much as we need to talk about the lotus. I’m glad it’s easier to do that now.

Today is World Prematurity Day. Visit the March of Dimes to learn more about premature birth and how it can be prevented.

H had air continuously pumped into his airways for a day after he was born. He was jaundiced and could not eat on his own. He was tethered by cords and wires to a monitor that told us whether his heart rate was too high or too low, whether his breathing had stopped, and how much oxygen was reaching his lungs at all times. And he was perfect. He was, without a doubt, whole and complete. I knew it right from the start. I knew that he didn’t need to be anything other than himself, that he didn’t need to do anything at all, that he was whole and complete just the way he was.

At 11 months, H cannot yet crawl, he makes a monumental mess when he eats, and he wakes often during the night. We have been through three rounds of biting while breastfeeding, each worse than the last. And he is perfect. He is, without a doubt, whole and complete. He doesn’t need to be anything other than himself, he doesn’t need to do anything at all, he is whole and complete just the way he is.

I thought about this a lot at the hospital, sitting with H in my arms or watching over him as he slept in his isolette. I wondered then, as I wonder now, about when we stop seeing ourselves and each other this way. Why do we feel we need to do something or be something different in order to be good? Why do we forget, or cover up, or ignore our essential goodness? Why do we become blind to it in others?

I don’t know the answers to these questions, but H serves as a good reminder to me to be gentle with myself and others. When I’m hardening toward myself, when I find judgment about someone else rising up in my mind, I think of H and how he is whole and complete just the way he is. And I am reminded to let go of the harshness and the judgement and instead be open to seeing each of us as we are, whole and complete.