World Prematurity Day

Today is World Prematurity Day, which is a day when people and organizations join together to raise awareness about premature birth. When I started this blog, I thought I would write more about prematurity and The Boy’s time in the NICU, but I haven’t. I think the reason why is, it’s hard. I mean, really fucking hard. I promise I WILL write it sometime, but I am just not in that headspace right now, and it may take something longer than a blog post, or even a series of them. I will say this: I hope it’s the worst thing that will ever happen to me in my life, because honestly, I don’t have any interest in finding out how much more shit I could handle.

What I want to write about today is about how to be helpful to a friend when they have a preemie. Because, I can’t even tell you how many times I get that question from people in my life. They come to me and say “Hey, my friend/cousin/coworker just had a preemie, what do I do?” Oh gosh, where to start? I guess I will start with this chart, which is just so amazingly brilliant. Go read it and internalize it and then come back. No, seriously, I’ll wait. Done? Good.

When you have a preemie, it’s like, you just had a baby, so you want to celebrate, right? I mean, that’s what we do when people have babies–it’s life renewing itself, they’re adorable, all that jazz. So, first things first, CELEBRATE that baby. Be excited for those parents. Ask if you can se a photo of the baby and say “Aw, so cute!” Help those parents be happy about the addition to their family.

But, also be aware, this isn’t a normal birth experience. This is a kid in the hospital. Your friend’s kid is in the HOSPITAL. Let that sink in for a minute–imagine if your kid was in the hospital, what would your life look like? Empathy is going to be really helpful in this situation.

It’s OK to ask questions about how the baby is doing, and the answers you get are going to tell you a lot about what that family is facing. A LOT about how that NICU experience plays out is going to depend on two things: how early the baby was born, and whether the baby has any complications during the NICU stay. In our case, The Boy was born pretty early–27 weeks instead of 40. Babies born at 23/24 weeks are about the youngest that can realistically survive. They are going to have very very long NICU stays, probably lasting past their due date, and will spend a lot of time on some kind of respiratory support. 25-32 weekers are hit or miss–some have very long NICU stays; others, like The Boy, come home a couple weeks before their due date. Babies born after 32 weeks tend to have short NICU stays unless there are complications.

And Jesus, the complications. This is one reason why I would never ever ever be dismissive to a parent whose baby was born less premature than The Boy. Because, The Boy didn’t have complications. He didn’t get any infections, which can kill preemies alarmingly easily. He didn’t have anything wrong with his heart or his digestive tract, both of which can extend a NICU stay and require surgery. He was what we in the NICU world call a feeder and grower. He ate and he grew until he was strong enough to come home. He had good days and bad ones, but his course towards discharge was pretty unremarkable. A 34 weeker with necrotizing enterocolitis? Yeah, they had it way worse than us, despite being born less early.

BUT! Gigantic huge BUT here…no matter how short a NICU stay is, it is too long. Five minutes in the NICU is too long. So, don’t belittle a parent’s trauma by saying things like “Oh, only 5 weeks early? That’s good, it’ll be a short NICU stay.” NO. It is not “good.” That it could be worse does not mean that it doesn’t suck. Go back and read my post on comparative pain. No seriously, go read it, I will wait here for you. You’re back? Good. Every minute in the NICU sucks. You are not asking questions in hopes of dismissing someone else’s trauma. You are asking so you know what kind of support is likely to be most useful.

Once you have a sense of whether this kid’s NICU stay is going to be a couple of days, a couple of weeks, a couple of months, or longer, then you’ll have a sense of what is helpful. If you’re in the weeks/months range? Buy them gift cards for whatever restaurant is near the hospital (I’m talking as close to the hospital as possible), or pack them a picnic to take to the hospital. You spend a lot of time at the hospital as a parent of a preemie, and cafeteria food gets old very fast. Also, hang in there with them–a long NICU stay is, well, long. And by a couple of months in, a lot of people have dropped out of being supportive.

For any length of stay, offer to do their laundry or clean their house, and when they say, “Oh, I couldn’t possibly impose on you to do that,” say “Please. Not imposing, I am offering, and it would be my pleasure.” Man, what I wouldn’t have given for someone to clean the house for me, so when we came home from a late night at the NICU, the bathroom was clean and the sheets were washed. But I was too uncomfortable to ask, and nobody knew to offer. And ask them if there are any supplies they may need that they hadn’t gotten around to buying yet, like diapers or bottles.

This is a huge thing: when the baby comes home, DO NOT BRING ANY GERMS ANYWHERE NEAR THE BABY. You want to be the one responsible for putting that kid back in the hospital? I didn’t think so. That preemie’s parent is not being paranoid when they say you can’t come over when you have the sniffles. They’re protecting their baby’s fragile lungs, which are way more fragile than a full-term baby’s lungs. The Boy came home from the NICU with bronchopulmonary dysplasia (BPD), and he was one of the “healthier” preemies. Look, I have kids, I get it about the constant stream of boogers coming from their noses in winter. I get that if you wait for everyone in your household to be well, you might not visit that preemie until spring. And I am sorry for your disappointment, but is your disappointment worth risking that preemie’s life? If the preemie’s parents say stay away, please, don’t be a douche about it. It’s hard enough being a shut-in all flu season without a guilt trip from your friends and family.

Most of all, just listen. It makes a huge difference to NICU families to know that someone cares. When The Boy was in the NICU, I quickly learned who I could count on as a friend, and who I couldn’t. The ones who I couldn’t? They didn’t want to listen when I talked about the rough times. They didn’t want to hear the horrible empty feelings I was having, that despite having just given birth, I didn’t feel like I was a real mom. Don’t be that person who can’t be counted on, because I promise you, it will be very hard to fix that relationship afterward.

If you’re looking for other resources on prematurity and how to support NICU families, go check out the March of Dimes website. They have great info, including what little we know about preventing prematurity, and a great message board community for NICU families. I raise money for the March if Dimes every year, because they’re an awesome organization, and their volunteers kept me sane during our NICU stay.

And, I usually am shitty about answering comments here because I am the laziest person you know, but I promise if any of you post a question on this post, I will respond.

Now, go hug a NICU parent! Because, they could probably use one.

6 thoughts on “World Prematurity Day

  1. Damn. I just starting crying over what a horrible time Finn’s 3 weeks in the NICU were in a combo of how lucky I feel today. Thanks for this. I love Jim’s success story, but know you guys went through hell. You & J are a huge pillar of support to so many. I will never forget you being so helpful to me.

    1. Colleen, I feel so lucky we found each other. It is definitely a big part of my healing process to help other moms who’ve been where I have–and I’m so glad your boys are doing so well nowadays!

  2. Yes. Thank you for saying ANY stay in the NICU is too long. Marsi was born past her due date and stayed in the hospital for 5 days. That was more than enough. My mom went through this with twins. It sucks. She still gets triggers of anxiety with simple things even though her preemies are 36 years old.

    1. Rachel, exactly. Every NICU journey is different, but none of them are good. None of them. And the wounds that the NICU inflicts never fully heal. We just learn to live with our traumas. Big hugs!

  3. Thank you for that post. I went into shock and stayed there for a long time after my daughter was born with a brain injury at 31 weeks. If it hadn’t been for my Great Husband of Merit, a remarkably sympathetic group of non-breeder friends and my mom, I wouldn’t have been able to feed myself, drive to the hospital or, frankly, get out of bed. Now, 16 years later, my miracle baby is a typically sullen, foot-stomping teenager with a messy room, good grades and no lingering after effects of her scary start. If there was one mistake I made when she was born it was that I would forget, in my darkest moments, that my husband was suffering, too. He didn’t have the advantage of emotionally supportive relatives to take the edge off of his pain. Luckily, I came out of my personal abyss in time to be able to give him the solace he gave me. And I identify with what you said about seeing other babies who were having a rougher time than we were. As long as I live I will never forget hearing that the baby in the next incubator, who had been on “nec watch”, had “gone to heaven” or that another baby’s birth injuries were “incompatible with life”. After all, we were “only” dealing with a brain injury. Everybody else’s trauma seemed so much scarier than ours.
    Keep it up g’fren, you rock.

    1. Susan, amen sister. One of the kids from my due date club who was born less premature than The Boy died of NEC. It still eats me up…and I know just how lucky we are to have a whiny 6-year-old who doesn’t want to take a bath, who’s gonna grow into a teenager who has me saying “PLEASE GOD LET HIM BE USING CONDOMS” because I reaaaaalllllly don’t wanna be a grandma in 10 years. But when you’re in it, you can’t think long term like that. Or at least, I couldn’t.

      Trauma blows, for moms AND dads, and The Hubs still has nightmares where he hears the NICU alarms. Actually, statistically speaking, NICU dads tend to have it worse long-term than moms in terms of PTSD. Hug a NICU dad today too, y’all!

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