5 Things to Understand About NICU Parents

Before I became a NICU parent, I had no idea what it meant to have a baby in the NICU. While we were still in the hospital, we had many people try and be helpful, but it didn’t always feel helpful. I know their hearts were in the right place, but sometimes it was more frustrating than helpful.

September is NICU Awareness Month, and in the spirit of spreading awareness, I’ve compiled a list of things you need to know about NICU babies and their parents.

September is NICU Awareness Month, and in the spirit of spreading awareness, here are 5 things you need to know about parents with a baby in the NICU.

Keep in mind, this list may not be 100% the same for every parent.

The birth of a baby can be a traumatic experience.

I’ve always heard how the birth of a baby is a beautiful, magical, life changing experience. While Kaden’s birth was definitely life changing, it was neither beautiful, nor magical.

Kaden’s birth was terrifying and scarring (literally if you count the c-section scar).

Most preemie/NICU parents have unexpected births. Even when a baby is born at, or close to term, the birth process still can be a traumatic one.

I can’t speak for all NICU moms, but my labor came on unexpectedly and quickly. I had to have an emergency c-section because my son was breech, and I had to be put under because I was too far into my labor to get an epidural. I woke up and my baby wasn’t in the room with me; in fact I didn’t get to see him until about 30-45 minutes after he was born, and even then it was for about 5 minutes maximum. I didn’t get to do skin to skin, and I only got to touch him through a porthole on a transportation isolate. He was then taken to a completely different hospital than the one I had to stay in.

What was meant to be one of the happiest days of my life, turned out to be the most traumatic and terrifying events of my life.

Unless you are a NICU parent, I don’t expect you to understand.

I am perfectly content spending literally all day at my baby’s bedside, even if I don’t touch him once.

There are times when a NICU baby may not be well enough or stable enough to be handled by anyone other than nurses, and only when necessary.

When Kaden was at his worst, I was unable to do anything but check his temperature every 4 hours, and I lived for it. I planed my life around the moments where I’d be able to touch my son, and I was perfectly fine sitting beside his isolate all day long. I would talk to him, sing to him, read to him, and just stare at him while he fought for his life.

I wasn’t bored. There was nowhere I wanted to be more than his bedside.

So when a NICU parent “blows you off” or seems “checked out” on the rare occasion that you do meet up outside of the hospital, don’t take it personal. We don’t mean to be rude or insult you, but we get such precious little time with our babies, that we can’t handle missing out on a diaper change or a temp check.

Regardless of how long you are in the NICU it is hard.

It doesn’t matter if your baby was born at term and needs to be in the NICU for a week, or born at 24 weeks gestation and is in for 4 months, being in the NICU is hard.

Babies don’t do to the NICU for a good reason. Babies go to the NICU because something is wrong.

As a parent, watching your baby fight through whatever ailment sent him to the NICU is heartbreaking. Leaving your baby behind every night is devastating.

The duration of your NICU stay doesn’t determine how much pain you feel as a parent. It’s never just two weeks in the NICU. It’s never just a short stay. It is painful, it is hard, it is heartbreaking, no matter the length of time.

Once a NICU parent, always a NICU parent.

Speaking from my own experiences, the anxiety of being in the NICU doesn’t go away.

Kaden recently had to deal with his first virus (which I’ll get in to more next) and I was terrified that I would have to take him to the emergency room, and that he would be admitted, or worse, go to the PICU.

Any little wheeze, cough, sneeze, sniffle, and I am running a list of possible ailments through my mind. His immune system isn’t up to par with a term baby as it is, and as scary as it is for any parent to deal with baby’s first illness, a NICU parent will most likely experience PTSD and flashbacks.

During the fall and winter when flu, RSV, and all the other illnesses run rampant, don’t be surprised if NICU parents barricade themselves inside and go in to quarantine to protect their babies and their hearts.

The Guilt is Real

Guilt that your baby was born early because of something you did.

Guilt that you didn’t get to the hospital fast enough to stop labor and keep your baby inside longer.

Guilt that you leave your baby behind at the hospital every night.

Guilt that you have other things you have to do, that keep you away from your baby’s bedside.

Guilt that you have to go back to work and your baby has to go to daycare and catch his first virus.

There’s so much that NICU parents feel guilty about, even though logically we may know that none of it was our fault. We feel like everything that happens is our fault, we feel like we can’t do anything right.

Logically, we may know that’s just not true, but it’s so hard to get rid of those feelings and see the truth.

As I said a minute ago, Kaden is working his way through his first virus and I feel like it’s my fault. I had to go back to work, and this is my first month being back at full time. I want to be able to stay home, but my husband and I can’t afford it. Instead, we have to ship Kaden to daycare, and within his first two weeks there at part time, he has a virus. Logically, I know it’s not my fault, but I feel like everything else he has gone through has been my fault, so why not this too?

If you know NICU parents, please cut them some slack.

They’re dealing with something traumatic.

They don’t mean to ignore you or blow you off, but they just want to be sure to make it to their baby’s hands on times.

They’ll probably be a lot more emotional and moody than you’re used to.

They will be forever changed by this experience, and they will parent differently than you do.

They will probably feel like everything is their fault (especially the mothers if they gave birth early).

So give them a hug, offer to mow the lawn or do the dishes (or better yet, get them a pack of paper plates and plastic forks so they don’t have dishes), buy them a gift card to a food delivery service or a restaurant that will deliver to a hospital.

Being in the NICU won’t last forever, and we know that, but please be patient with us as we work through it.

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