Introduction
Welcome to the Empowering NICU Parents’ Podcast!
Our podcast is dedicated to supporting, educating, and empowering parents navigating the challenges of having a baby in the NICU.
September is NICU Awareness Month, and September 30th is NICU Awareness Day! And this year, I wanted to do something a little different.
I have a feeling that if you’re a NICU parent, you’re going to know exactly what I’m talking about today. And if you’re a NICU nurse, nurse practitioner, physician, respiratory therapist, physical therapist, speech-language pathologist, or another member of the NICU care team, I have a feeling you’ll relate, too—just from a slightly different perspective.
It’s almost like we have this little inside secret. Something we all experience in different ways but don’t necessarily talk about. And sometimes, we have thoughts and feelings that we wouldn’t dare say out loud because we’re not quite sure how someone else might interpret them.
And that’s exactly what I want to talk about today.
Because here’s the thing about life in and beyond the NICU. It can be filled with incredible joy, hope, love, and celebration. But it can also bring tremendous fear, sadness, uncertainty, jealousy, and utter heartbreak.
And sometimes, all of those emotions can coexist at exactly the same time.
You can be incredibly grateful and still be angry. You can experience tremendous joy and still feel sadness. You can absolutely love what you do and still have days when you wonder how you’re going to find the energy to do it all again tomorrow.
And you know what?
Two things can be true at the same time.
So, for this NICU Awareness Month, I’m inviting you into a conversation that I think many of us will recognize but perhaps haven’t always known how to put into words.
I’m sharing a little more of my own experience, both as William’s mom, twelve years after our NICU journey began, and as a Neonatal Nurse Practitioner who has spent more than two decades caring for babies and their families.
And while I think my fellow NICU parents and clinicians will find themselves nodding along, I especially hope that the friends and family members of NICU parents will listen, too.
Because sometimes the things we don’t say out loud are the very things we wish the people who love us understood.
And I don’t mean just politely nodding along during a conversation. I mean really, truly understanding. That “Oh my goodness, I never thought about it that way” kind of understanding.
And maybe, by having these conversations, we can help people see a side of the NICU experience they hadn’t considered before.
And what better place to begin than with something that happened to me recently? A simple conversation about William that unexpectedly brought up some pretty complicated emotions.
Emotions that, twelve years ago, I never imagined I’d be feeling today.
Today, we’re talking about Two Things Can Be True: The Beautiful, Bittersweet Reality of Life In and Beyond the NICU.
Get Ready to Become Empowered, This is the Empowering NICU Parents’ Podcast.
Two Things Can Be True: The Beautiful, Bittersweet Reality of Life In and Beyond the NICU – Empowering NICU Parents' Podcast
- Two Things Can Be True: The Beautiful, Bittersweet Reality of Life In and Beyond the NICU
- More Than Feeding: How the Infant-Driven Feeding® Program Empowers NICU Parents
- The Presence Study Toolkit: Helping NICUs Translate Evidence into Practice
- Beyond the NICU: How Small Moments Shape a Developing Brain
- The Why Behind Empowering NICU Parents
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Episode 83
Gratitude and Grief Can Coexist
Twelve years ago, I stood beside William’s isolette, praying for the opportunity to watch him grow up and willing God to give me the opportunity to see what his future would look like.
Today, I can stand in front of him and look almost directly into his eyes.
I am extraordinarily grateful for that.
But watching him grow has also brought emotions I wasn’t necessarily expecting.
There’s tremendous joy in seeing the child I once feared losing become the young man he is today. There’s also sadness over how quickly those years have passed—and even anger that fear and trauma occupied space during some of those precious years and made parts of them difficult for me to remember clearly.
For a long time, I think I would have felt guilty admitting that.
How can you possibly be sad when you have so much to be grateful for?
I’ve learned that I don’t have to choose.
Being grateful for your child’s outcome doesn’t mean you can’t grieve parts of your experience.
A child’s progress doesn’t erase a parent’s pain.
And a positive outcome doesn’t retroactively make the difficult moments any less difficult.
Both things can be true.
The Complicated Reality of Parental Presence
If you’ve listened to this podcast before, you know how strongly I believe that parents are essential caregivers in the NICU—not visitors.
Parental presence, involvement, and the parent-infant relationship matter tremendously.
But there’s another side of that conversation that we also need to acknowledge.
Parents are human beings.
They may have other children at home, jobs they need to return to, responsibilities that can’t simply be put on hold, or an overwhelming physical and emotional need for rest.
You can want to spend every possible minute beside your baby and still desperately need to sleep.
You can treasure skin-to-skin care and sometimes feel completely depleted.
You can hate walking out of the NICU and still need a night at home.
You can miss your baby every second you’re away and still need that time away.
Needing to take care of yourself does not make you any less devoted to your baby.
Both things can be true.
Celebrating Milestones While Grieving What Was Lost
NICU life is filled with milestones that families celebrate with an intensity that can be difficult to explain unless you’ve experienced it.
Twenty grams gained.
Moving from an isolette to a crib.
The first bottle or attempt at breastfeeding.
The first bath.
The first outfit.
Those moments can feel enormous.
And at the very same time, you can see someone who is as pregnant as you should still be and experience an unexpected wave of jealousy, sadness, or even anger—and then feel guilty for feeling that way at all.
Celebrating your baby doesn’t mean you have to pretend you didn’t lose something, too.
The same can be true of birthdays. Your child’s birthday can be one of the greatest days of your life and also one of the most frightening or traumatic.
Those truths don’t cancel each other out.
And then there’s discharge.
For weeks or months, home is the goal. You wait for it, work toward it, and dream about finally walking through your front door with your baby.
Then someone tells you it’s time to go home, and the very thing you’ve prayed for can suddenly feel terrifying.
You’re leaving the monitors and the around-the-clock care. You’re also saying goodbye to nurses, respiratory therapists, physicians, NNPs, therapists, and others who may have become another family during one of the most difficult seasons of your life.
Discharge can be one of the happiest days of a NICU parent’s life and still feel frightening, overwhelming, and incredibly bittersweet.
Discharge means the NICU stay ended. It doesn’t necessarily mean the NICU experience ended.
When the Happing Ending Does Not Tell the Whole Story
There’s another contradiction that I think becomes even more apparent as our children grow, especially when they’re doing really well.
You can want everyone to treat your child just like everyone else—and desperately want them to understand everything your child has been through.
I don’t want William defined by the fact that he was born at 23 weeks.
He’s William.
His personality, interests, dreams, milestones, and accomplishments belong to him.
I don’t want every achievement followed by, “Especially considering he was a 23-weeker.”
But at the very same time?
There are moments when I want to say, Do you have any idea what this child has been through? Do you have any idea what it took for him to get here?
Because while I don’t want prematurity to define him, I don’t want that part of his story erased either.
It’s part of who he is. It’s part of our family’s story.
And sometimes I desperately want people to understand just how extraordinary the road to what now looks like an ordinary childhood really was.
His health today is something I am ecstatic about and extraordinarily grateful for.
But his health today doesn’t erase what happened twelve years ago.
It doesn’t erase the difficult days of my pregnancy, the fear and uncertainty surrounding his delivery, his 91 days in the NICU, the procedures, setbacks, or moments when I genuinely didn’t know what our future would look like.
And it doesn’t erase the emotional impact of those experiences or the ways they affected me in the years that followed.
You can move forward with your life and still be taken back to the NICU without warning.
A sound.
A photograph.
A date.
A hospital hallway.
Another family’s story.
Healing doesn’t require forgetting.
And moving forward doesn’t mean pretending the experience didn’t change you.
I can celebrate the wonderful life my son has today and still want to make the NICU experience better for the families who come after us.
Both things can be true.
An Important Message for Friends and Family
If someone you love has experienced the NICU, this may be one of the most important parts of this episode.
When a NICU parent talks about something difficult they experienced, our natural instinct may be to reassure them.
“But look at him now!”
“You’d never even know he was premature.”
“But she’s so healthy!”
“You must be so grateful.”
Those comments are usually said with love. They’re meant to be encouraging.
But they can also unintentionally minimize the very thing a parent is trying to share.
Believe me, NICU parents know how fortunate they are when their children are healthy and thriving.
We know.
We celebrate our children. We’re grateful for the birthdays, the milestones, the ordinary days, and the opportunity to watch them grow.
But when we’re sharing something difficult about our NICU experience, we’re not asking someone to convince us to be grateful.
Sometimes, we simply want someone to acknowledge what it took to get here.
You don’t have to remind them of the happy ending when they’re talking about the hard beginning.
You don’t have to fix it.
You don’t have to find the silver lining.
And you don’t need to completely understand every emotion they’re describing.
Sometimes the most meaningful response is simply:
“I know how grateful you are. And I also know that what you went through was incredibly difficult.”
That’s it.
Gratitude doesn’t erase trauma. A healthy, thriving child doesn’t mean their parents have forgotten what happened along the way.
And acknowledging those experiences doesn’t mean we’re living in the past.
Sometimes, those experiences are exactly why we advocate so passionately to make things better for the families who come after us.
Two Things Can Be True for Clinicians Too
This conversation isn’t only about NICU parents.
Whether you’re a bedside nurse, nurse practitioner, physician, respiratory therapist, physical or occupational therapist, speech-language pathologist, or another member of the NICU care team, I think you’ll recognize this idea from a different perspective.
Caring for NICU babies and their families can be incredibly rewarding.
There is tremendous joy in this work. We witness incredible milestones, celebrate progress that others might take for granted, and experience the privilege of watching babies leave the NICU with their families.
But NICU care is also so much more than “feeding and snuggling babies,” as people outside of neonatal care sometimes imagine.
It can be physically and emotionally exhausting.
It means making difficult decisions, managing emergencies, supporting families through devastating moments, and sometimes going home carrying the weight of what happened during your shift.
You can celebrate one family’s discharge while knowing another family just received devastating news.
You can be an experienced clinician and still have a day that affects you deeply.
You can love what you do and still be tired, overwhelmed, frustrated, sad, or simply acknowledge that some days are downright hard.
Both things can be true.
And while the babies we care for may eventually leave our units, the experiences their families have with us can remain with them for a lifetime.
The things that feel routine to us may be moments a parent never forgets.
And sometimes a seemingly small gesture of compassion, a conversation, or simply helping a mother or father feel like their baby’s parent can have an impact that lasts far beyond discharge.
What I Hope You’ll Take Away
NICU Awareness is about more than recognizing premature and critically ill babies, celebrating milestones, or acknowledging the extraordinary work of neonatal healthcare professionals.
It’s also about recognizing the people behind those experiences—and understanding that their emotions, challenges, and needs may be far more complicated than they appear.
As a NICU mom and a Neonatal Nurse Practitioner, I’ve experienced this from two very different perspectives. And if there’s one thing I’ve learned, it’s that we don’t always have to choose between seemingly conflicting emotions.
NICU parents can be overwhelmingly grateful and still grieve.
We can celebrate how healthy and happy our children are today while still acknowledging the trauma, fear, sadness, or anger connected to how their stories began.
We can desperately want to be beside our babies and still need to leave.
We can heal and still remember.
And those of us who care for NICU babies and their families can absolutely love what we do while acknowledging that this work can also be difficult, exhausting, stressful, and heartbreaking.
None of those feelings cancels out the other.
And for the friends and family members who love a NICU parent, perhaps the most important takeaway is this:
You don’t have to remind them of the happy ending when they’re talking about the hard beginning.
You don’t have to fix it or find the silver lining. Sometimes, you simply need to listen and acknowledge that what they experienced was really hard—even if the child standing in front of you today is healthy and thriving.
The beautiful parts of our stories and the difficult ones both deserve space.
Because two things can be true at the same time.
Listen, Reflect, and Share
Whether you’re currently navigating the NICU, reflecting on an experience from years ago, caring for NICU babies and their families, or supporting someone you love, I hope this episode gives you an opportunity to feel seen—or perhaps to see someone else’s experience a little differently.
For NICU Awareness Month and NICU Awareness Day, I hope we do more than simply recognize the NICU.
I hope we recognize the people.
The babies. The parents. The siblings. The families. And the healthcare professionals who walk alongside them.
I hope we become more aware of the experiences we don’t always see, the emotions we don’t always understand, and the lasting impact our words and actions can have.
And maybe most importantly, I hope we remember that we don’t have to fully understand someone else’s experience to acknowledge that it matters.
Sometimes, we just need to listen.
Listen to this special episode of Empowering NICU Parents and consider sharing it with a NICU parent, someone who loves a NICU family, or a healthcare professional who might benefit from hearing this perspective.
Because two things can be true at the same time. 💚
Closing
As we come to the end of today’s episode, I want to leave you with one final thought.
We don’t have to choose between the beautiful parts of our stories and the difficult ones. Both deserve to be acknowledged.
To my fellow NICU parents, whether your baby is still in the NICU, you’ve recently brought them home, or you’re watching them grow up years later, I hope you’ll give yourself permission to feel whatever it is you’re feeling.
You don’t have to justify your sadness by first explaining how grateful you are. And you certainly don’t have to feel guilty for having emotions that sometimes seem to contradict one another.
Your experience matters, too.
To the friends and family members listening, please don’t assume that because a child is healthy and thriving, their family’s NICU experience is entirely behind them.
Celebrate with them. Absolutely. But make room for the difficult conversations, too. You don’t need to have the perfect words. Sometimes the most meaningful thing you can do is simply listen.
And to my fellow NICU clinicians, thank you for the work you do, the difficult decisions you make, and the countless moments of compassion that can mean absolutely everything to a family.
I hope you’ll give yourselves the same grace we encourage our NICU parents to have. You can love your work and still acknowledge how incredibly difficult it can be.
And please remember that while our patients may eventually leave our units, the experiences their families have with us can remain with them for a lifetime.
We have an incredible opportunity to make those experiences better by recognizing what families are going through and helping parents feel like the essential caregivers they are.
So this NICU Awareness Month and on NICU Awareness Day, I hope we do more than recognize the NICU.
I hope we recognize the people.
The babies. The parents. The siblings. The families. And the incredible healthcare professionals who walk alongside them.
I hope we become more aware of the experiences we don’t always see, the emotions we don’t always understand, and the lasting impact our words and actions can have.
Because we don’t have to understand every part of someone else’s experience to acknowledge that it matters.
Sometimes, we just need to listen.
Thank you for spending this time with me and for being part of the Empowering NICU Parents community.
If today’s episode resonated with you, I hope you’ll share it with someone who might benefit from hearing this perspective.
Let’s continue these conversations long after NICU Awareness Month comes to an end.
Thank you for joining me for this important conversation and for allowing me to be a part of your journey!
And as always, please consider sharing this episode with someone who may gain some value from it! remember—together, we are stronger!
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