Why we started the NICU Hearts Collective: Emily'sorigin story

I remember being wheeled into the NICU for the first time. But I remember it in flashes. Dramatic, crystal-clear flashes. It's like looking through a View-Master, clicking through 3D photos on that little circular reel that keeps going around and around in my head. (If you just got that reference, hello, fellow '90s kid. Your knees probably hurt too.)

When I met my daughter for the first time, it felt like I was the only one in the room with her. I know I wasn't. There were plenty of staff. My husband was there. Somebody was definitely pushing the wheelchair. But in that moment, the tunnel vision was strong.

I could barely stand. It had been hours since I gave birth. Hours since they whisked her away before I even got to see what she looked like. Hours since my system went into shock, since parts of my brain went offline, since parts of my body were changed for good. My left leg was numb, and not from the epidural, which had supposedly worn off long before. The birth was so long and so hard that it damaged the nerves in my leg.

To this day, I still have numbness there. A little souvenir from my daughter's birth day, the most traumatic day of my life.

The days that followed were pure survival. Honestly, that survival mode lasted for years. I felt isolated and lonely, even when I was surrounded by people.

The NICU has a way of doing that.

And here's the kicker: working with babies and families in hospitals was my actual job. I knew the equipment, the terminology, the rhythm of the units. I thought that would make it easier.

It didn't. Knowing what the monitors mean doesn't stop your heart from dropping every time one goes off.

When your world shrinks

When your baby is in the NICU, your world gets very small, very fast. The walls close in, literally and metaphorically.

You might spend all your time in one tiny corner of a hospital, afraid that if you step away, you'll miss something big.

You might spend your time in your car, driving between the hospital and home, crying in the silence, grateful for a break from the beeping and feeling guilty for not being next to your baby.

You might spend your time bouncing between both, trying to keep life on the outside moving while desperately wishing it would all just stop.

The walls of grief, trauma, and survival mode are thick, narrow, and unforgiving.

And it can feel like nobody understands.

Often, very few people do.

Following the pull

After years of processing my own grief and trauma around my daughter's birth, her life, and everything that followed, I decided it was time to follow the pull in my heart.

(Full disclosure: I wanted to start down this path just a few months after my daughter died, because that's what my grief was telling me to do. My grief counselor very graciously steered me toward waiting on big life decisions until I'd moved out of the acute grief chapter. In hindsight, this was a so-very-wise suggestion. Thank you, Dani.)

I wasn't starting from scratch. By then, I'd spent more than 16 years as a pediatric occupational therapist in hospital-based acute care and early intervention. I'm also an infant mental health specialist, so supporting babies and families through hard beginnings was already my everyday work.

But this time, I wanted to support the parents too.

So I became a certified Trauma-Informed Grief Coach. And since I was already working through one certification, why not do a second one at the same time? Totally normal and relaxed behavior.

I also became a Certified Lactation Counselor, because I wanted to support parents through their early feeding experiences, whatever those look like. Feeding was a huge pain point in my own parenting journey. I wasn't able to nurse either of my babies the way I wanted to, and pumping became an important part of feeling like a mom.

Enter Atara

Fast-forward a bit, and I was showing up in Facebook groups for NICU parents, medical parents, and bereaved parents. I was learning from others, connecting through shared experiences, and offering compassionate, trauma-informed responses when people asked for support.

And sure enough, there was a woman named Atara doing the exact same thing, right alongside me (although, in a different state all together). I’ll let Atara fill you all in on her background in another post, but I can just say that she is a powerhouse.

We recognized something in each other. We were both trying to be a guiding light for people navigating the NICU and incredibly hard early-parenting experiences. And we both noticed the same gap: very few responses in these groups actually made room for a person's grief and trauma.

Most replies went something like, "Oh, I totally hear you... here's my story." And then came the trauma dump on the original poster.

Validating? Maybe.
Helpful? Mostly not.
Dismissive? Often.

What that told me is that there are SO many people out there who just need their story to be heard. They need someone who can relate. They need to feel seen and acknowledged in their pain. They need help naming their grief.

So Atara and I started chatting. Then brainstorming. Then creating. And somewhere along the way, through whatever powers that be, we realized we could actually make this happen.

And that's how the NICU Hearts Collective was born. (Thankfully, a much smoother delivery.)

What we're building

We wanted a space that feels inviting. A place where you can find resources, search for what's meaningful to you, and let go of what doesn't fit your story. Somewhere with tools for support, ways to navigate the muddy days, and room to move through your grief while still holding on to the gratitude that can live right next to it.

Above all, we wanted it to be a community. Because we can't heal on our own. We're emotional humans, and we need to connect with other people on that emotional level. That doesn't just mean sitting in each other's sorrow. It means walking together through all of it: the joy, the grief, the guilt, the pain, the excitement, and every other feeling that shows up along this complicated path of parenthood.

Whether you're in the NICU right now, recently home, or years down the road, there's a place for you here.

We're so glad you found us. Come say hi.