How to Get Past the NICU and Enjoy Real Life | The NICU Part 2

Are you a NICU mom?

If so, welcome to our little subset of the mama world.

If you’re feeling stupid for not knowing how to let your baby tell you he’s hungry, you are not alone.

If you’re panicking because you don’t know your baby’s okay without seeing her O2 sat on a screen, you are not alone.

If you’re distraught because you’re a pumping champion now, but you can’t get your screaming bundle of starvation to latch on your breast, you are not alone.

If you’re a NICU mom floundering at home now that you have total agency over your baby’s life, you are not alone.

All over the world, there are tons of us! Some of us may still be new to this, with squishy, floppy newborns to figure out right now.

Some of us already navigated that period and have had opportunity to reflect on our NICU experiences.

Some of us are seasoned vets many years out from the NICU stay, wondering how to explain to our kids that the red patches on their cheeks came from medical tape holding tubes in when they were newborns.

Being a NICU mom comes with a lifelong badge, and it means we’re there to help each other.

I’m the NICU mom of a toddler.

Related Reading: The NICU | Part 1

I’m sharing my experience because I know it can help someone else through theirs.

So the first thing I want you to know? You have a community of support right at your fingertips. Use this post as a springboard for starting to process your experience, and go find another NICU mama to have coffee with, or a support group to join. Chances are, your NICU has one on file and can point you in the right direction.

In the meantime, we’re going to talk about processing the NICU experience.

Struggling is 100% Normal and 100% Okay

We could probably do with a little bit of training when they send us home from the NICU.

Everything is pretty baby-centered in there, right? It’s about your baby, not your wishes. It’s about what baby needs, not what you’d hoped for. It’s about what the medical team thinks is best, not your dreams of your first interactions with your baby.

When we discuss discharge, it’s all about baby meeting thresholds and goals to leave. It’s about them showing us they can make it on the outside.

But what if we can’t make it on the outside?

It’s 100% normal to struggle as a NICU parent. It’s common to feel like you don’t know how to take care of your baby without the monitors, measuring, nurses, and machines. It’s natural to have a big adjustment period when you get home, even if your baby is weeks or months old.

Adjusting to the Real World is a Real Thing

The NICU runs as a well-oiled machine because it has to. A small team of staff care for dozens of tiny babies (or gigantic, in our case) who can’t survive without medical intervention.

They do it with no guarantee of help from parents, with the pressure of getting it right, getting babies better, and getting them out of there. Day and night they take care of the most precious things in the entire world.

The schedule allows them to meet every baby’s needs. The rules are there to ensure maximum health and safety for each one.

And while this system works super well for the NICU environment, it sets us up for failure when we get home.

Because we don’t know how to feed our baby when she’s hungry instead of on a schedule.

Because we don’t know how to not force him to eat one last mL.

Because we don’t know how to sleep at night without monitors to shriek us into action if something goes wrong.

Don’t Struggle Alone

I wish I had sought out more help immediately when we got home.

The hardest things for me were letting Lydia tell me when she was hungry, and not freaking out if she didn’t eat all of what we wanted her to eat. She was a hypoglycemic baby in the NICU and we had to force feed her formula on top of her glucose IV, and I just didn’t know how to not do that at home, especially when she wasn’t gaining weight.

I could have benefitted from asking more questions at our pediatrician visits, and from talking with other NICU moms right away.

Instead, it took me months of Lydia’s life not to worry when she didn’t finish a bottle or when she wasn’t hungry when I expected her to be.

We always joked that the NICU was going to come steal her back, but sometimes when I felt like I was failing, that was way too real of a feeling for me!

If you’re fresh out of the NICU, still in the mindset of cluster care or die, I highly encourage you to open up a conversation with your pediatrician about adjusting to the relaxed atmosphere of home. Lean on the resources you have available to you. Talk to other moms. Talk to your mom or your grandma or your mother in law.

Ask them how to build up your trust and confidence in yourself, because that’s what this all boils down to. You have to learn to trust yourself as a caregiver. You must become confident in your ability to use your own brain and instincts to meet your baby’s needs instead of the safety cushion and the rigid schedule of the NICU and its science.

Motherhood is a mysterious art, and once you’re outside the NICU, you’re on all the time. There is no pause button. There is no letting the nurse take the next cycle. It’s all you.

Don’t fumble around on your own. Use your resources, or find and assemble an iron-clad support system. Your child’s doctor can be an incredible first resource for that. You may even need some short-term counseling to work through trauma.

Do what you need to do, because you owe it to yourself and your baby to enjoy your newfound freedom of living at home!

The Lingering Memories Of All You Missed Out On

As you get further out from the NICU and grow in your skills as a mom, you may start to realize you have some festering wounds from the NICU experience.

For months, I couldn’t get past a few bad memories that really hurt.

A NICU nurse gave Lydia her first bath without even calling to see if we wanted to be there for it.

We never got the ink footprint because other things were much higher priorities, and it still hurts to see cute artwork made with the baby footprints, because I don’t have a single one and the opportunity has long passed.

I didn’t get to breastfeed in those first days, and the times we tried just to keep the mechanics fresh for Lydia were nightmares that ended in tears and perceived judgment from nurses.

I missed out on a lot of Lydia’s care because of not associating me with bottle feeding, because of recovering from the C-section, and because meshing the schedule with meeting our own needs was next to impossible.

I felt dumb for not being able to nurture Lydia the way we’d learned in parenting classes. I felt stuck and stupid for not being able to get past those nagging bad habits from the NICU, like worrying more than I should have about how and when to feed and whether she was getting enough.

I was frustrated with my own brain for the NICU method getting ingrained in me like I’d been reprogrammed.

I was bitter. I was mad. I wanted to go back and do it over so I could do it better. All the times I couldn’t be there for Lydia cut me to the core. All the first moments we missed out on stung when I read others’ birth stories and saw them get to have so much of what I couldn’t and would never get back. We missed so many chances, and there was no changing it.

It’s 100% Okay to Be Upset

After the NICU, you might be thinking, “But it’s over now and I have my baby at home; I should be thankful. Why do I feel this way?”

There’s not a single soul who doesn’t believe that you are grateful down to your bones to finally have your baby at home, mama.

But the nature of the NICU means that for a while, however long it was, you stepped into an alternate dimension of motherhood where everything you thought you knew about newborn care was turned upside down.

There wasn’t time to struggle with breastfeeding and work with a lactation consultant. It was formula or death.

There wasn’t time to snuggle your baby on your chest after they pulled her out. It was rush this kid to the NICU team and intubate because she’s too young to breathe on her own.

There wasn’t time to learn your baby’s hunger cues and hone your skills at figuring out what he needed. It was the cluster care schedule because that’s how NICUs run.

So How We Deal With It?

The best advice I received from a fellow NICU mom after the NICU was to grieve what I’d lost.

It had been weeks since we’d brought our daughter home, and I’d finally worked up the courage to ask my friend if we could talk about our shared experiences. She’s a micro-preemie mom whose firstborn was in the NICU for months.

I wrestled big time with guilt about my NICU experience, because four days was nothing compared to what preemie moms go through.

And yet. I am a NICU mom.

This friend didn’t look at me skeptically like, “You don’t have a right to be upset about that. Your baby was in there a fraction of the time mine was!”

Instead, she gave me permission to feel.

Give Yourself Permission to Grieve

The unique circumstances of our experiences mean that we’ll have different things we grieve. If you reflect on your time in the NICU (or maybe you’re still pushing toward graduation), what stands out the most to you? What memories cut you through like a freshly sharpened knife?

Those are what we as NICU moms have to gradually confront and process.

We may feel any of the aspects of grief: denial, anger, bargaining, depression.

But we’re working towards eventually gaining the fifth: acceptance.

It doesn’t mean we don’t return to those memories and feel the pain they carry from time to time. It just means they aren’t the things we cling to.

It means that more and more, we fully see and embrace the child right in front of us instead of looking back to the newborn they used to be and wishing, regretting, and longing to get back. It means being the best mom we can be now even if we couldn’t be there all the time then.

It means getting to a place of healthy remembrance of our NICU experience so we can be there for our friend whose baby was just born a month and a half early or whose bilirubin just crossed the threshold of “too high.”

Our NICU experience brings us to a place where we cherish the time we have with our babies a little more than we would have otherwise. It makes us hold dear the privilege of being the ones chosen to raise our children and make decisions in their best interest. And it reminds us what it feels like not to have ultimate control over their lives.

Because one day they will start pushing back. One day they will realize just how well they can fly. And we will remember those days when we couldn’t do everything for them, couldn’t make all the decisions.

Maybe, just maybe, it will make it a little easier to let them go.

~Kaitlyn

You might also like these posts:

My Breech Birth Story

Christian Corner | Entrusting Our Children to the One Who Sees

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