Lesson 11: Grief-What No One Tells You About Life After the NICU
Everyone prepares you for the hard parts. They warn you about the monitors, the medical jargon, the roller coaster of progress and setbacks. They tell you to take it one day at a time, to celebrate small victories, to prepare for a marathon, not a sprint.
But no one tells you about the unexpected gifts hidden inside the hardest season of your life.
No one tells you that you'll miss it.
The People You Never Wanted to Need
When I was first rolled from the recovery room to the NICU, I wanted out immediately. This sterile, beeping world wasn't where I'd imagined motherhood beginning. These nurses and doctors were kind, yes, but I wanted to take Charli home. I wanted our family, our routines, our life to start.
What I didn't know then was that I was about to meet some of the most important people in my life.
There was the night nurse who taught me how to read Charli's cues before I could even name them myself. The respiratory therapist who celebrated with us when she came off oxygen support. The lactation consultant who sat with me during my lowest moment and reminded me that feeding my baby—however it happened—was love.
These weren't just medical professionals doing their jobs. They became Charli's village. Our village.
And here's the thing nobody tells you: when you leave, you'll grieve them.
Not because anything went wrong, but because something went profoundly right. These people saw your child at their most vulnerable. They witnessed your worst fears and your greatest hopes. They cheered for milestones that the outside world would never understand—a temperature regulated for 24 hours, three successful feeds in a row, a weight gain of two ounces.
The day we walked out of the hospital, I cried. Not just from relief and joy and exhaustion, but from loss. I was leaving the people who had held us through the unimaginable. Who would I text at 3am now when I was worried? Who would understand the particular terror of a desaturation alarm?
I still think about them. We go back to annual reunions and share Charli’s growth changes and development. They always remember her! I try to make sure they know how much they mattered.
The Unexpected Competence
Before the NICU, I'd never changed such a small diaper, it literally fit in the palm of my hand. I'd never given a sponge bath avoiding IVs and wires. I joked nervously that babies didn't come with instruction manuals.
And then I got the instruction manual. Medical-grade, round-the-clock, expert-supervised training in caring for my child.
By the time we left, I could:
Read a monitor like a second language
Detect subtle changes in breathing patterns
Calculate caloric intake and weight percentiles in my sleep
Administer medications with precision
Recognize the difference between seventeen different types of crying
Advocate with medical terminology I'd never heard three months earlier
Here's what no one tells you: you'll become more confident in your parenting abilities than parents who brought their babies home on day two.
Not because you're better. But because you were given something precious—time. Time to learn your specific child under the guidance of experts. Time to make mistakes when there was a safety net. Time to ask a thousand questions and get real answers.
The NICU stripped away all the Instagram-perfect fantasies of what parenting "should" look like and taught me what it actually looks like for my child. I learned that every child comes with a different manual, but parents need to learn how to read the language.
Yes, there's trauma in that education. Yes, I would have chosen a different path if given the option. But I won't pretend the competence I gained wasn't real, or valuable, or something I draw on every single day.
The Babies Whose Names You Never Knew
Green team, Bed 4. That's how I think of her—the baby girl in the isolette next door to Charli for three weeks.
I never learned her name. Never met her parents; our schedules didn't align. But I knew her. I knew when she had a good night because her monitor stayed quiet. I knew when she struggled because the alarms would cascade and my own heart would race in response. I found myself whispering encouragement to her when I'd arrive for Charli's morning feeding: Come on, sweet girl. You've got this.
When her isolette was suddenly empty one morning, I felt it like a punch. I didn't know if she'd graduated or crashed. I asked a nurse, hesitantly, afraid to overstep. "She went home yesterday," the nurse smiled. "Doing great."
I cried. For a baby whose name I'd never known. Whose face I'd barely seen through the walls. But whose journey had somehow become tangled up with my own.
The NICU creates this strange, sacred community of babies and parents. You're all in the trenches together, fighting invisible battles, hoping for the same miracle: just let us take our babies home. You become bonded not through play dates or mommy groups, but through shared 3am vigils, through celebrating neighbors' wins like they're your own, through grieving setbacks that aren't even yours to grieve.
No one tells you that you'll carry those other babies with you. That you'll think of green team, Bed 4 on random Tuesdays and wonder if she's thriving. That you'll see a news story about prematurity and feel it in your bones because you know—you know—what those families are living through.
You join a club nobody wants to be in. But once you're in, the connection runs deep.
The Symphony of Beeps You Learn to Love
The first days in the NICU, I couldn't stand it. The monitors were too loud—incessant beeping, alarms layering over each other, the mechanical whoosh of ventilators, the sudden shrill cry of a desaturation warning.
I wanted to scream: How does anyone heal in this chaos?
And then, slowly, something shifted. The beeps became a language. A steady pulse meant everything was okay. That particular rhythm meant her oxygen was stable. The absence of sound meant something was wrong.
By week three, I could sleep through the normal beeps. They became a lullaby—proof that Charli was still here, still fighting, still breathing. The monitors that had felt like prison guards became guardian angels, watching over her when I couldn't keep my eyes open anymore.
When we came home, the silence was deafening.
I'd wake up in a panic, reaching for a monitor that wasn't there. Where were the numbers? How did I know she was okay? I missed the mechanical reassurance, the constant data stream telling me her heart was beating, her lungs were working, her body was doing what it needed to do.
No one tells you that you'll long for the very thing that traumatized you. That the soundtrack of your worst nightmare becomes the soundtrack of your survival. That leaving the monitors behind feels both like freedom and like freefall.
It took weeks to trust the silence. To believe that absence of alarms didn't mean something terrible had happened—it meant we were okay. We were home. We'd made it.
But sometimes, in the quiet of night, I still miss those beeps.
The Version of Yourself You Discover
I thought I knew myself before the NICU. I thought I understood my capacity for resilience, my breaking points, my strengths.
I was wrong.
The NICU peeled back every layer of who I thought I was and revealed someone I didn't know existed. Someone who could:
Function on two hours of sleep
Hold hope and despair simultaneously without shattering
Advocate fiercely even while trembling
Find joy in the smallest, most mundane victories
Sit with uncertainty without needing to fix it
Love more ferociously than I'd imagined possible
I learned I could survive what I thought would destroy me. I learned that my body could betray me (by not carrying Charli to term) and my spirit could still show up every single day. I learned that strength doesn't look like stoic endurance—it looks like crying in the lactation room and then washing your face and trying again.
The NICU also revealed my limitations. I learned I couldn't do it alone, couldn't muscle through on sheer determination. I needed to ask for help, to accept meals from friends, to let my partner carry the weight when I couldn't anymore.
Here's what no one tells you: You'll emerge from the NICU as a different person. Not broken, though you might feel that way sometimes. Not healed, though parts of you will be stronger. Just... different. Someone who's been to a place most people only imagine in their worst nightmares, and who walked back out carrying a miracle.
You'll spend years integrating this new version of yourself with the person you used to be. Figuring out how to carry both the trauma and the gratitude, the grief and the joy, the scars and the growth.
Things Go Better Than You Can Imagine
In the thick of it, I couldn't see past the next feed, the next weigh-in, the next hurdle. The doctors prepared us for worst-case scenarios—feeding tubes, lack of brain development, developmental delays, ongoing medical needs. They had to. That's responsible medicine.
But here's what they couldn't promise, and what no one dared tell me for fear I'd cling to false hope:
Sometimes things go better than anyone predicted.
Not always. Not for everyone. And I hold space for the families whose journeys stayed hard long after discharge. But for us? Charli exceeded many of our worst fears. The feeding tube we came home with was never used. The developmental milestones we were told might be delayed? She hit some of them on time and some even early. Yes, some are delayed. Some battles we were told to expect? Never materialized.
I'm not saying this to minimize the ongoing challenges—there are days that are still hard in ways unique to NICU graduates. But I am saying this: the NICU teaches you to prepare for the worst, and sometimes you forget to leave room for the possibility that things might be... okay or even better than okay.
Your baby might surprise everyone. They might be more resilient than their birth weight or gestational age suggested. They might do the thing the doctors said was unlikely.
And when they do, you'll feel a specific kind of joy that parents of full-term babies might never access—the joy of defying odds, of witnessing impossibility made real, of knowing exactly how precarious the miracle was.
The Club You Never Wanted to Join
There's a nod that happens between NICU parents. A recognition. Sometimes it's because you catch the details—how they calculate milestones differently, their wariness during flu season, the extra layer of caution that becomes second nature. Sometimes it's just energy—you can feel it when someone else has lived in that liminal space between life and loss.
And when you connect with another NICU parent, even years later, there's no need for small talk. You skip right past the surface and land in the depth. Because you know. You know what it's like to parent in the space between hope and grief. To celebrate ounces and milliliters. To memorize your baby's face through plastic walls before you were allowed to hold them.
This club you never wanted to join becomes a source of profound connection. These are people who won't judge you when you say, "I still have PTSD from the alarms" or "I can't go to baby showers anymore" or "I feel guilty that I missed her first two weeks of life even though I was there every day."
They get it. All of it. The contradictions, the complexity, the ways joy and trauma coexist in the same moment.
No one tells you that you'll be grateful to be a member of this club. Not grateful for the reason you're in it, but grateful for the people you find there. For the friends who text you on your NICU anniversary. For the online communities that hold space for the hard stuff. For the other parents who see you, really see you, because they've walked the same path.
Coming Home: The Beginning You Weren't Ready For
We thought leaving the NICU was the finish line. That once we got Charli home, the hard part would be over.
Turns out, discharge was just a different kind of beginning.
Home was wonderful and terrifying. Freedom mixed with isolation. Relief mixed with new anxieties. No more monitors meant no more constant reassurance. No more nurses meant no more backup when you second-guess yourself. No more built-in community meant a specific kind of loneliness that nobody warns you about.
I missed the team. I missed knowing that if something went sideways, help was thirty seconds away. I missed the parents I'd nod to in the hallway, the shared understanding that needed no words.
But slowly, we built a new rhythm. We learned to trust ourselves. We learned that Charli was stronger than her fragile beginning suggested. We learned that life after the NICU isn't about going back to "normal"—it's about creating a new normal that holds all of it: the trauma, the triumph, the ongoing vigilance, the hard-won joy.
The Gratitude That Coexists With Grief
Here's the most complicated truth no one tells you: You can be devastated that your child needed the NICU and profoundly grateful for every single thing about that experience.
You can wish with every fiber of your being that you'd had a different start and recognize that the NICU gave you gifts you wouldn't have otherwise received.
You can grieve the birth experience you lost and treasure the nurses who became family.
You can carry trauma from those weeks or months and hold deep appreciation for the competence and community you gained.
It's not either/or. It's the messy both/and.
This isn't toxic positivity. I'm not asking you to be grateful for trauma. I'm saying that life after the NICU requires holding space for all of it—the beautiful and the brutal, the growth and the grief, the connections made and the innocence lost.
Some days the gratitude feels bigger. Some days the grief takes up all the space. Both are valid. Both are true.
What I Wish Someone Had Told Me
If I could go back to those first terrifying days and whisper something to that version of myself, I'd say this:
You're going to miss this. Not the fear, not the uncertainty, not the trauma. But the people. The purpose. The clarity of what matters. You're going to learn things about yourself and your child that will shape the rest of your life. You're going to become part of a community you never wanted but will always be grateful for.
Things are going to be hard in ways you can't imagine. And things are going to be beautiful in ways you can't imagine either.
Your baby is going to teach you their language. The nurses are going to become family. The beeps are going to become your lullaby. And when you finally walk out those doors, you're going to carry all of it with you—the pain and the power, the trauma and the transformation.
You're joining a really special group of parents and people. Welcome to the club.
To my fellow NICU parents: What's something about life after the NICU that surprised you?
What do you wish someone had told you?
I'd love to hear your reflections in the comments below.
I’ve created a short survey to hear directly from families who have experienced NICU discharge. Whether your baby came home recently or years ago, your insights are invaluable. Your responses will shape a more supportive, family-centered approach to post-NICU care.
Please take a few minutes to fill out this survey. https://forms.gle/5yVChNa2EcBQsbXb6
Your voice matters. Your experience matters. And your time is deeply appreciated. Please feel free to share this with other NICU families or professionals who walk alongside them. Together, we can make the road home gentler for the next family.
With gratitude,
Shayna Abraham,
Founder, Prepare To Bloom & Beyond the NICU