The Waiting: What the In-Between Actually Feels Like

Every NICU family is waiting for the same thing from the moment they're admitted.

Discharge.

From the very first day — through the fear and the uncertainty and the learning curve of a world you never asked to be part of — somewhere underneath all of it, you're waiting. Waiting for the day you get to take your baby home and never come back.

But between admission and discharge, there's a stretch of time that nobody prepares you for. The in-between. The days where nothing dramatic happens. No big scares. No big wins. Just... another day.

And somehow, those days are their own kind of hard.

I've said it before, but the NICU feels like Groundhog Day.

You wake up. You call the bedside. You go to work. You drive to the hospital. You scrub in. You sit down. You get an update. You hold your baby. You leave your baby. You drive home. You do it again tomorrow.

And on the days where there are no changes — good or bad — and the plan is simply to grow, that repetition can become its own kind of stressor. Every day you call or walk in hoping for some kind of update signifying progression. A new milestone. A step forward. Something that tells you today is different from yesterday.

And sometimes you don't get that.

The doctor says she's doing well. The nurse says she had a good night. The plan is the same as yesterday. Continue feeds. Continue growing. Keep doing what we're doing.

That should feel like good news. And it is. But when you're months into a journey with no visible finish line, "keep doing what we're doing" can feel like being stuck. Even when you're not.

Here's what I've learned to remind myself on the quiet days: every day there isn't a step back is an automatic step forward.

It doesn't feel like it. There's no alarm that goes off to celebrate another uneventful day. Nobody walks in and says "congratulations, nothing went wrong." But that's exactly what happened — nothing went wrong. Your baby made it through another 24 hours of growing, developing, and getting stronger.

Every day — and even every hour early on — is a win. Because your baby is beating the odds. They're doing something extraordinary just by being here, just by growing, just by making it to tomorrow. The progression is happening even when it doesn't look like anything is happening at all.

The milestones will come. But between them, there are dozens of quiet days that don't feel like progress. They are. You just can't always see it from the bedside.

Right now, specifically, we're waiting for a few things.

We're waiting for some respiratory milestones. We're waiting for our daughter to increase her intake during bottle feedings— she's learning, but she's taking her time. And we're waiting for improvements related to a ROP stage 3 diagnosis, which is something that will come with time and monitoring.

All of these things are progressing. None of them are on a fixed timeline. And all of them are things that we can't speed up no matter how badly we want to.

That's the cruelest part of the waiting — you can't do anything to make it go faster. You can advocate. You can ask questions. You can be present and involved. But at the end of the day, your baby's body is on its own schedule. And your job is to be there while it figures things out.

This is the unfair advantage of having gone through the NICU for 102 days before: I know how this works.

There is never a clean discharge date until that day comes. There's no calendar with a circle on it. No countdown app on your phone. The doctors might say "we're thinking a few more weeks" and then a setback happens and suddenly it's a few more weeks after that.

With our first daughter, she was close to being discharged. So close. But she kept having one spell or brady a day. Just one. And the doctors aren't going to send a baby home who is having spells — understandably so.

Each time she had a spell, it restarted a 24-hour clock. She needed to go a full day without one before discharge was back on the table. And this happened over and over and over for about a week. One spell. Clock restarts. Wait another day. One spell. Clock restarts. Wait another day.

It was maddening. We were right there. We could see the finish line. And every day it moved just a little further away.

After going through that, I know that during the times of uncertainty, the best thing I've found is just embracing the days as another day of growing.

Not counting down. Not projecting dates. Not building expectations around a timeline that doesn't exist. Just showing up, being present, and trusting that each day — even the boring ones, especially the boring ones — is one step closer to an unknown date that will eventually come.

That's harder than it sounds. The human brain wants an endpoint. It wants to know when this is over. It wants to plan and prepare and count the days. But the NICU doesn't work like that. And the sooner you accept that, the lighter the waiting becomes.

It doesn't become easy. It becomes lighter. There's a difference.

If you're reading this from a NICU room on a day where nothing happened — no drama, no progress, no news — I want you to know that today still mattered.

Your baby grew today. Maybe not in a way that shows up on a chart or gets mentioned during rounds. But they grew. They got one day stronger. One day more developed. One day closer to home.

And you showed up. Again. Like you did yesterday. Like you'll do tomorrow. Through the monotony and the uncertainty and the waiting that feels like it will never end.

It will end. I promise you it will. The day will come when you walk out of that NICU for the last time with your baby in your arms. And when it does, every single one of these quiet, uneventful, nothing-happened days will have been worth it.

Because they were never nothing days. They were growing days. And growing is the whole point.

— Louie

Two-time NICU dad. 102 days the first time. Still counting the second. Still embracing every day of growing.

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