Into Motherhood: A monthly photo + poem series inspired by authentic interviews with everyday moms.

Holly + Neonatal Intensive Care Awareness

September is Neonatal Intensive Care Awareness (NICA) month and to honor it, we have a beautiful, harrowing motherhood journey to share with you. In this tender interview, mom Holly, shares her perspective as a mom of a baby in the  NICU and offers us sage advice about what we can do to better support families like hers.

Holly’s son, Emmett, arrived after a traumatic 41-hour labor and emergency c-section.  Holly says, “Moments after they pulled him out of me, everyone in the room knew there was something wrong. He was blue, gasping for breath, and after one quick cry, he fell silent.” Emmett was immediately rushed to Seattle Children’s Hospital while Holly stayed in Tacoma waiting to hear what would happen next.

Holly did not hold her baby until three days later and with assistance from a team of medical professionals. Emmett had been diagnosed with Congenital Diaphragmatic Hernia (CHD). The birth and NICU hospital stay were scary and exhausting enough, but Holly wishes more people understood the journey does not stop at the hospital discharge, it actually begins there. 

So how do we support NICU families and moms on this kind of journey? 

Holly suggests that NICU families actually need just as much support when they are out of the hospital as they do when they are in it.  “Specifically for NICU moms, I think the support would look a lot like continuing to check in months and years after the birth of their child. We have wonderful friends and family who would send food, gift cards, and words of support while we were hospitalized and in the weeks after. However, I think as time went on, when the adrenaline wore off, around the 6 - 8 months mark, that’s when I really hit a wall. I wish our society was better at checking on mothers further down the line, months after the baby comes home. That’s when I need someone to cook us a meal or fold the 5 baskets of clean laundry, or just listen to me as I try to unpack the events that took place! ”

She also gave us a list of things NOT to say to medical moms. Don’t say: 

•  “You are stronger for going through this!” (Because “strong” was the only option. )

• “Everything happens for a reason.” (There is no reason my 2 week old should have had to go through morphine withdrawals.)

• “He doesn’t look sick to me!” ( These are all well-meaning phrases but they can be painful to hear as it feels like they discredit the whole experience, and cheapens it with toxic positivity.)

• “Are you going to have another baby?”  I don’t know and I don’t want to talk about it here!

And of course, one of the simplest but meaningful things we can do is listen to and empathize with their story. Which is why it is such an honor for us to share Holly’s full interview with you, as well as the photo story and poem below. 

MARVELOUSLY COMPLEX

   for medical moms 
By Michelle Bengson

When I trace the tubes tied to your body, 
I imagine unstowing your pain 
and showing you the world.  
As I cradle you through stale white sheets,
on a motorized hospital bed, I consider how 
they labeled you medically complex. 
I run my fingers across your weak lungs,
you spread a smile full of breath. I remember
how a nurse said, Your baby is a marvel. 
While my palm holds your forehead, I count 
all the things that are marvelously complex.
The twinkle in your eyes.  The dimples on your hands.
The way you say, mama.  And when logic 
and words cannot reach us, I hum and tap your lips. 
Then I wrap my fingers through yours, 
and I think of how our bond in this bed
is a world itself.

I was independent before motherhood. It took 10+ years together with my husband before we decided to try to conceive a baby. I got pregnant within a month of trying.

Our baby, Emmett, came after a dramatic 41-hours labor and an emergency c-section. When they pulled him out, everyone knew something was wrong. They rushed him to Seattle Children’s, while I stayed in Tacoma waiting to hear what would happen next.

The first time I held Emmett was days later. He was 3 days old. It took a team of trained medical professionals to place him in my arms. And I did not hold him again until he was stable from surgery, which was weeks later.

But the hospital stay was the beginning of our journey. Coming home with Emmett started a new set of challenges. At home, there were no nurses to calibrate the feeding pump. No doctors to listen to his lungs. No vitals are taken every few hours. The first time I heard the term “medically complex” was weeks after they discharged Emmett from the hospital. A social worker called to check on us due to Emmett being a medically complex minor. I became solely responsible for warning signs and knowing when to seek help.

Being a medical mom can feel isolating. My husband and I have had to set boundaries with friends and family. From the outside, Emmett looks like a thriving two-year-old. And to well-meaning family and friends, it can be challenging to understand why we have to turn down invitations. We are constantly weighing the risk vs benefit. We have not been to music classes, swimming lessons, or mommy and me classes. For a long time, we did not even leave our living room - COVID, Flu, RSV, oh my!

For me, this creates a prodigious amount of anxiety, which I’ve learned to manage. I’ve learned through experience that worrying does nothing to better prepare me for the bad things. All it does is rob me of the days when we are home and healthy!

But please don’t say to medical moms like me, “you are stronger for going through this” or “everything happens for a reason”. There is no reason my 2-week-old should have had to go through morphine withdrawals. These are all well-meaning phrases but they discredit the whole experience. Cheapen it with toxic positivity.

I wish we had not had the hard start we did. I would take away all Emmett’s pain if I could. But I would also do it all over again if needed. This version of me comes with more anxiety, heartaches, and sleepless nights, but it also comes with Emmett… and he is pure magic.

He’s famous among his medical team for his cheesy grin. We have asked so much of him and with wisdom beyond his years, he somehow knows it is necessary to keep him safe.

And I love the sweetness that comes with motherhood. It brings joy back to my life that got forgotten ages ago. Like I can experience things for the first time again. I love watching Emmett say new words. I love the tiny dimples on Emmett’s hands. The twinkle in his eyes. I love being Emmett’s person. I’m his mama and he needs me like he needs his favorite stuffed toy. Or a drink of water right before bed. I know his tiny body like I know the back of my own hands.

I am his world and he is mine. And it is a miracle.