Why I Love My NICU Support Group

When my son was first admitted to the Neonatal Intensive Care Unit, I thought I could handle it alone. I had seen a flyer for a support group meeting on the fridge on my way back to my son’s pod, but I didn’t ever bother to check and see when the meetings were or where.

I have dealt with family in the hospital before. I’m a sign language interpreter, so I have worked bedside assignments before.

I’ve never been a mother before, though.

I’ve never watched my child fight for his tiny little life.

I’ve never had half of my heart outside of my body and watched it struggle to surive.

Meeting the members of my hospital’s NICU support group was one of the best things to come out of our NICU stay. Here is why I love my group, and why I highly recommend you join one, too.

It wasn’t until the incident with Kaden’s PICC line that I decided I needed help. I realized that I couldn’t be strong enough on my own, and I needed to be with people that understood.

My family and friends were as supportive as they knew how to be. My husband was in just as much pain as I was, and he didn’t know how to support me in this time.

In order for my nurses to be able to give my information to the volunteer running the support group, and for her to be able to come back and talk to me, I had to sign a waiver giving them permission.

Almost immediately, a women came to my son’s bedside and I met the support group coordinator/leader/organizer/a fellow NICU mother. The moment I started talking to her, I could see the understanding in her expression, and I could feel an instantaneous bond just from looking in to her eyes.

She knew, better than anyone I’d spoken to before, what I was feeling. She understood what I was going through on a level that the nurses and doctors just couldn’t.

The members of my son’s medical team were kind and did what they could for me, but they just didn’t understand what it felt like to be the mother of that tiny human in the incubator.

This woman knew all too well what it was like.

She invited me to come to a group meeting, and it was one of the best decisions I made during our NICU stay.

Here’s why:

Nobody will ever understand what it’s like to be a NICU Parent, unless they have been one.

Being the parent of a NICU baby is a class of it’s own. Within that class are sort of subdivisions, like parents of multiples and parents that have lost their baby, but ultimately, all NICU parents have a basic connection.

We understand that the pregnancy and parenting books aren’t meant for us. Our babies are different than those born at term, even though they may grow up to look “normal”. Our babies are more prone to sickness, developmental delays, and a slew of other conditions, even though they look “normal”.

Other parents mean well, and they try to give the best advice they can, but their babies are different in a way that they will never understand. I’m happy that other parents can’t understand, because it’s something they should never have to, but it makes talking to them about what’s going on a little more difficult.

A relevant example, is that with flu/cold/RSV season ramping up, many NICU parents decide to go in to a sort of isolation during the winter months. Some parents to full term babies do as well, but it’s much less common as they (understandably so) want to take their baby to all the family functions and show off their tiny human.

Family and friends don’t understand why NICU parents “want” to hole up in their homes and isolate themselves from everyone during the holidays (I use the word “want” loosely, because I highly doubt anyone genuinely wants to hide away and miss out on time with loved ones). They may show up unannounced and frankly, unwelcomed, then not understand why they can’t hold and kiss on their new grandchild/niece/nephew/cousin, and they may feel offended that you won’t “share”.

Other NICU parents get it, and they probably did the same thing for their child’s first winter.

Your fears, anxieties, victories, and emotions are all validated.

Not that you should ever feel “wrong” or “bad” for feeling the things you do, but it’s such a relief when you tell someone what you’re feeling and they say “me too!” or you get that oh-I-know-what-you-mean nod.

It’s a relief to have other parents confirm what you’re going through and then giving you a story about how they dealt with their situation. When you’re in a support group meeting and you tell your story, there’s usually at least one other parent nodding along with “me too” written on their face.

When you’re telling your story to anyone else, you may get some gasps and “oh you poor thing”s and “I couldn’t imagine”s and “you’re so strong”s, but you won’t get understanding, not really. You’ll get pity, not empathy.

In a support group, you get just that; support.

You get validation, you get reassurance that you aren’t the first person to deal with these struggles, and you get relief in knowing that you can pull through, because they did.

You form bonds that last.

I have met some absolutely incredible women (and men!) from my support group.

As much as I wish these fantastic women had been given the opportunity to have a “normal” birth to a full term baby with no health problems, I’m so happy we were brought together.

I know that if I were to ever need anything, I could ask any one of those women and they would be there for me in half a heartbeat.

I’ve never known such a strong bond between strangers could exist, but it does!

The other NICU parents I’ve met really feel like an extension of family. I rejoice with them when there are victories, my heart aches with them when there are setbacks. I laugh with them and cry with them, just as they do with me.

When your baby graduates from the NICU and goes home, that bond doesn’t just vanish into thin air. When your baby goes home from the NICU, s/he is still a NICU baby and you will still have victories, setbacks, concerns, achievements, and you will have a group of people that truly understand, to share it all with (other than your significant other, of course).

Your baby has his/her own cheer leading squad, prayer team, support system.

While in the NICU, and after, there is always a group of people waiting for an update and wanting to know how both you and your baby are doing.

They will celebrate with every ounce gained, with every poopy diaper (because poopy diapers are huge in the NICU!), with every successful feeding, with every stable night, with every step.

They will get you through the pain of every increase of medication dosage, every bump up of oxygen, every surgery, every o2/BP drop, every setback.

Of course, they are there supporting you as the parent, but they are also sending positive vibes to your little one. They are praying as hard as they can to help your baby get over the hump. They are cheering for every step closer to getting discharged and going home.

Even after the NICU days are behind you, they keep cheering for every milestone achieved, knowing that you’ll hit those milestones on your baby’s schedule, not the doctors’.

I would never wish NICU life on anyone, but it has brought me to some of the best human beings I could have ever wanted to meet.

The bonds formed were instantaneous, the understanding was immediate, there is nothing but love and compassion from my support group.

Never have I felt so strongly for a group, and never have I been so inspired to give back.

NICU parents are a breed of their own, and I’ve found my tribe among them.


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