When Things Go Wrong in the NICU: Surviving Setbacks and the Emotional Roller Coaster

The car seat was tested. The paperwork was started. We'd done the CPR class, reviewed the discharge instructions, and mentally prepared ourselves for the terrifying privilege of taking our daughter home after 102 days in the NICU.

Then she had a Brady episode. Her heart rate dropped. The monitor alarmed. The nurses intervened. And the 24-hour countdown to discharge — the countdown we'd been watching obsessively for days — reset to zero.

Again.

This wasn't the first time. It wouldn't be the last. Every time we got within hours of that finish line, another Brady episode would happen and we'd be back at the start. The emotional whiplash of thinking today's the day only to learn it would be at least another 24 hours was brutal.

That was our first daughter's hardest setback. The second time around, it was different.

My youngest daughter came off the oscillator — the high-frequency ventilator that does the breathing when a baby's lungs aren't strong enough yet — and we celebrated. Real progress. A step toward going home. Then, a few days later, she went back on it.

To some NICU families, that might not seem like a huge setback. But here's why it hit me differently: I didn't hold her on the oscillator. The thought of holding her while she was intubated on that machine — the fear that I would cause her to accidentally extubate, that my movement or my nervousness would hurt her — it terrified me. So I didn't.

And when she went back on the oscillator, I knew what that meant. More days, maybe weeks, without holding my daughter. More time watching her through plastic instead of feeling her against my chest.

That setback didn't just delay her progress. It delayed us. And it broke something in me that day.

When things go wrong in the NICU — when your baby regresses instead of progresses, when a procedure fails, when an infection sets in, when the doctor walks in with bad news — it feels catastrophic.

It feels like if this went wrong, everything else is going to come crashing down. Like you've been walking a tightrope and someone just cut the rope and you're free-falling with no idea where the bottom is.

Your whole day is ruined. Your hope is gone. The fragile optimism you'd been building — the belief that things were finally moving in the right direction — shatters.

I've been there. Multiple times, across two NICU stays. And every single time a setback happened, I went to that same dark place: this is it. This is where it all falls apart.

But here's what I wish someone had told me in those moments: setbacks are part of the process. They are not the end of the story. They are part of understanding the story.

The NICU is not a straight line from sick to healthy.

It's a winding, unpredictable road full of advances and retreats, wins and losses, steps forward and steps back. Your baby's body is learning how to do things it wasn't developmentally ready to do yet. Lungs that should still be in the womb are learning to breathe. A digestive system that wasn't supposed to process food yet is learning to eat. A heart that's smaller than it should be is learning to regulate.

And sometimes — often — that learning process includes setbacks.

A Brady episode doesn't mean your baby is failing. It means their nervous system is still maturing and sometimes it misfires. Going back on respiratory support doesn't mean they're getting worse. It means their lungs needed more help than the team initially thought, and now they're getting it.

Setbacks are not failure. They are recalibration. They are the NICU team learning what your baby needs and adjusting the plan accordingly.

I didn't understand that at first. I thought every setback was evidence that we were losing ground, that my daughter wasn't strong enough, that this was never going to end.

But over time I realized: the setbacks were helping the doctors understand my daughter better. They were revealing what she needed. And once the team knew what she needed, they could give it to her.

That's what setbacks do. They clarify. They inform. They redirect.

They're part of the process of getting your baby home.

Here's the part nobody prepares you for: the hope is what makes the setbacks so brutal.

If you never let yourself believe things were getting better, the setbacks wouldn't hurt as much. But you do let yourself believe. You have to. Because hope is the only thing that gets you through the NICU.

So when your baby has three good days in a row, you start to believe. You start imagining discharge. You start planning what life will look like when this is finally over. You let yourself feel optimistic for the first time in weeks.

And then the setback happens. And it's not just disappointment — it's devastation. Because you let yourself hope, and now that hope has been ripped away and you're back in the uncertainty and the fear and the endless waiting.

That emotional roller coaster — the constant swinging between hope and despair, progress and regression, good days and bad days — it's exhausting. It wears you down in ways that are hard to describe to people who haven't lived it.

But here's what I learned: you have to keep riding it. You have to keep letting yourself hope even though you know another setback could be coming. Because the alternative — shutting down emotionally, protecting yourself by refusing to feel anything — that doesn't work either. Your baby needs you present. And being present means feeling everything, even when it hurts.

The hardest thing about setbacks is that they make you question whether the progress was ever real.

When my daughter went back on the oscillator, I thought: was coming off it even progress? Or was that just a false start, a temporary win that didn't actually mean anything?

But here's what I eventually understood: the progress was real. The fact that she came off the oscillator at all — even for a few days — meant her lungs were strong enough to try. The setback didn't erase that. It just meant she needed more time.

And that realization changed everything for me.

Setbacks don't undo progress. They just reveal that the path is longer than you thought. The small wins still count. The milestones still matter. The good days still happened, even if they're followed by hard days.

This is why celebrating the small wins is so important. Because in the NICU, progress is never guaranteed to be permanent. But that doesn't make it any less meaningful.

Every step forward — even if it's followed by a step back — is teaching your baby's body what it needs to learn. And eventually, those steps forward will stick.

I'm not going to lie to you and say setbacks get easier. They don't. Every single one hurts.

But here's what helps:

Ask questions. When a setback happens, ask the team why. Not in an accusatory way, but in a help me understand way. "What does this mean?" "What are we learning from this?" "What's the plan now?" Understanding the reason behind the setback makes it feel less like failure and more like information.

Reframe the timeline. When discharge gets pushed back or a milestone gets delayed, it's easy to spiral into "this is never going to end." But the NICU doesn't work on your timeline. It works on your baby's timeline. And sometimes your baby needs more time. That's not failure. That's just reality.

Let yourself feel it. Don't try to be strong all the time. Don't pretend setbacks don't hurt. Cry if you need to. Rage if you need to. Call a friend. Sit in the car and scream. Whatever you need to process the disappointment — do it. Pushing it down doesn't make it go away. It just makes it heavier. This is where taking care of yourself becomes survival, not luxury.

Find one person who gets it. Whether it's another NICU parent, a nurse who's seen this a hundred times, or someone in your life who's willing to just sit with you in the hard moments — find that person. Because setbacks are isolating. And you need someone who can remind you that this is part of the process, not the end of the story.

Hold onto the wins. When a setback happens, it's easy to forget everything that's gone right. Go back and look at the milestones you've already celebrated. The weight gains. The breathing improvements. The tubes that came out. Those still count. The setback doesn't erase them.

Here's what I want you to know: the ups and downs are 100% part of the process.

Not because the NICU is broken or because your baby isn't strong enough, but because healing — especially for a premature or medically fragile baby — is not linear. It's messy. It's unpredictable. It's two steps forward, one step back, and sometimes three steps sideways before you finally get where you're going.

You will have good days that give you hope. And you will have setbacks that break your heart. And both of those things will keep happening, over and over, until the day you finally walk out of that NICU with your baby in your arms.

That's the reality. And I wish someone had told me that on day one.

Not to scare me, but to prepare me. So I would know that when the setback came — and it would come — it didn't mean we were failing. It meant we were still in the fight. Still learning. Still moving toward home, even if the path was longer and harder than we wanted it to be.

If you're reading this because your baby just had a setback, I see you.

I see the hope you were holding onto and the way it just got crushed. I see the exhaustion of starting over, again, when you thought you were almost done. I see the fear that this will keep happening, that you'll never get to take your baby home.

And I want you to know: this is not the end of your story.

This is a hard chapter. This is the part where it feels impossible. But it is not the end.

Your baby is still here. Your baby is still fighting. And the NICU team is still working to get you both home.

The setback hurts. But it doesn't define the outcome.

Hold onto that. Even when it feels like everything is falling apart.

Because the small wins still matter. The progress still counts. And eventually — I promise you — you will walk out those NICU doors.

It just might take longer than you thought. And that's okay.

You're going to make it.

— Louie

Two-time NICU dad. Still riding the roller coaster. Still celebrating the wins.

Between Beeps is a newsletter for NICU families. Subscribe below.

Between Beeps does not provide medical advice. Always follow your NICU team’s recommendations.