8 Things to NEVER Say to a Preemie Parent (and what to say instead)

If you stayed out of the hospital through your pregnancy, and were able to go home within 48 hours of giving birth (with your baby), and your friends and family were more or less the same, there’s a big chance you have no idea what the acronym NICU means. While it’s not something I ever thought about before, I probably didn’t until about 20 minutes before my emergency c-section at a mere 29 weeks. You can read more about my traumatizing experience, but there is a huge dictionary of words I never wanted to know, now burned into my brain forever.

NICU is one of them. For those unsure, NICU stands for Neonatal Intensive Care Unit. They specialize in saving babies like those that are sick, or born too early -also called premature, or preemie for short. NICU nurses are some of the strongest, bravest and most compassionate people I have ever met. We especially had some incredible ones (who fought over my daughter) and had our backs when things went South. But nevertheless, the NICU is one of the scariest, saddest, and hardest places I have ever been to. And those who haven’t had their own child in it, have no idea.

NICU PTSD is very real. It took almost 8 months after discharge for me to turn the ‘ringer’ on my phone back on because any sort of sudden ‘tone’ could set me off. I encouraged my baby to over sleep, and over eat because our list of rules and ‘things to watch for’ from the cardiologist alone could send us flying back to the hospital at any moment. For 6 months after discharge we hid in isolation, never leaving the house, never having people over, carrying sanitizer everywhere as we cleaned our hands every 30 seconds – actually I still do it.

This is my life. This is my reality. And while I don’t expect people who haven’t lived it to understand, it would be nice if they admitted ignorance and respected our situation. With that said, here are 8 good rules of thumb for anyone around a preemie; what not to say (even if most of it is well intended), why, and what you could say instead.

8 Things To Never Say to a preemie parent (and what to say instead)


1 | “At least you didn’t have to deal with the 3rd trimester.”

If I hear this one more time I will probably scream. Here’s MY story: I had a HORRIFIC pregnancy. I was in and out of the hospital, I didn’t leave the house the entire time except for Dr’s offices and Hospitals. Actually I didn’t leave the bathroom floor because I puked the entire time. I lost 20 lbs, and I didn’t even have 5 lbs to lose to begin with. I had Hyperemesis Gravidarum AND Pre-Eclampsia. Along with all the ‘normal’ pregnancy symptoms. And I would HAPPILY take the 3rd trimester with those issues over seeing my baby covered in wires and tubes in a plastic box and having no idea if she’d survive the hour.

WHAT TO SAY INSTEAD:

I’m here if you need to talk. I don’t know how your pregnancy went, you don’t know how mine went. So lets not assume anything about each other, and more importantly lets not compare because its not a competition. So lets just talk. Lets just vent and rant and get emotions out, but no one is a winner in this situation so don’t you dare make it a competition.

2 | “You’re lucky you got to meet your baby early”

At some point I stopped talking to people who used the word ‘lucky’ to describe anything about our situation. Having medical issues forcing a baby into the world early to battle odds that were never in her favor is not luck. yes I go to hold and kiss her and meet her 2.5 months early. But I’d rather feel her kick inside me, knowing she was growing, then watch her kick inside a plastic box and wonder if this is the last time I’ll see her kick.

WHAT TO SAY INSTEAD:

I don’t know what to say. It’s okay to admit that. It’s okay because I don’t know either. And sometimes I just sat in silence with people. And that was okay because I wasn’t alone. Someone was trying to understand my situation without demeaning it or my daughter or me.

3 | “Those first 6 weeks are the hardest, you’re lucky you missed them!”

I can’t even wrap my head around this one. Those first 6 weeks I had to leave my baby in a plastic box wrapped up in tubes and go home every night. I didn’t know if she would survive each and every hour. And every time the hospital called I stopped breathing. Forget sleep. Forget eating. Forget normal life. It’s a waiting game. An absolutely terrifying waiting game. I didn’t get to experience her crying at night because I got to listen to silence and wait for the phone to ring to tell me she had passed. I didn’t get to experience her first scream, her first feed, her first diaper change. In fact there are a lot of firsts I didn’t get. I didn’t even see her until 12 hours after she was born. I didn’t see her first bath, her first bottle feed, I didn’t even get footprints of her tiny feet.

And to top it all off, it’s not like when she got home she was a normal 6 week old. In fact  preemies go by two ages: actual and adjusted. Adjusted is the age they currently are from their DUE date. They use that for measuring milestones, so when my daughter got home, she wasn’t even at her due date yet. To say she was still a newborn is literally an understatement. We still got the ‘hard first 6 weeks’, because we were lucky she came home at all.

WHAT TO SAY INSTEAD:

I know it’s difficult, but try to get some rest. Your baby needs you healthy and strong.

4 | “The hospital is the best place she can be”

No. Absolutely not. She isn’t suppose to be born yet. The womb is the best place she can be. Saying that only accentuates that fact and pushes another layer of guilt over mama.

WHAT TO SAY INSTEAD:

What can I do to help?

5 | “She’s so tiny!”

Yes I noticed. That’s why there’s a tube through her nose feeding her fortified milk every couple hours while she sleeps so she can try to grow. She wasn’t suppose to be tiny. In fact for her age she was running big, they thought I’d have to get a c-section because she’d be too big to give natural birth to. Again, this isn’t an attempt to be rude – but pointing out these things drowns mama in guilt. preemie babies don’t look like term babies. It often takes time for them to grow into their bodies. They never got a chance to fully form their heads, much less pack on some weight.

WHAT TO SAY INSTEAD:

Try commenting on family resemblance if you must comment on appearance.

6 | “At least your baby is alive…”

Is that suppose to make me feel better? YES I’m incredibly thankful she’s alive. I’m WELL AWARE many preemies don’t make it out of the hospital. But if she has stayed inside of me, this wouldn’t be happening so thank you for adding another layer of guilt.

WHAT TO SAY INSTEAD:

Congratulations! Do you know how many of those I heard after my daughter was born? Maybe 3? People were terrified to say it. So they said “sorry” they said “it’ll be over before you know it”, and they said “at least she’s alive..”. Tell me congrats on bringing a beautiful baby into this world. Acknowledge that my daughter exists and is alive. Acknowledge that she’s a fighter.

7 | “Stop worrying about germs, you can’t protect them forever”

Let me make this easy for you: preemie baby + cold germs = hospitalization or death. Healthy baby + cold germs = a temporary cold. See the difference? MY pediatrician recommended no daycare until at least 2 if not later because of her heart conditions. They are putting off surgery as long as possible but a cold WOULD put her in the hospital and COULD kill her. I don’t have hand sanitizer in every room because I’m a helicopter mom, I have it because not washing once could kill my child. If you don’t know what the doctor has recommended, don’t assume.

WHAT TO SAY INSTEAD:

What can I do to help keep her healthy? Whats the next step in her journey? Acknowledging that she has a different journey than a term baby is the first step. Respecting that is the best thing you can do for any preemie child or parent.

8 | “You have a built in baby sitter!”

NICU nurses aren’t babysitters. They hover over the babies and make sure they are always breathing. Because sometimes they stop. Actually they often stop. They forget because their little bodies weren’t ready to breathe like that yet. Their hearts do this as well. And if a baby is trying to multitask, such as laying on mom’s chest and breathe or eat and breathe- they ALWAYS forget. Saying this, even jokingly, is highly disrespectful to the amazing people KEEPING MY BABY ALIVE. I’ve seen them cuddle lonely babies, sing lullaby’s, hold hands with my child as another nurse looked for a vein, I’ve seen them cry when a baby passes, and applaud when a baby leaves with their family. These are not babysitters, they are life savers. They are the strongest and most compassionate people I have ever met.

And even if they weren’t, I don’t want a babysitter. I want my baby. I don’t want to ‘go on date night’ or ‘get some sleep because I’ll need it’. I want to be sleepless because my baby is screaming, keeping me up, not because its silent because I don’t know if shes alive.

WHAT TO SAY INSTEAD:

YOU are the most important person in your baby’s life. As a preemie parent, NOTHING is in my control. I can’t even choose the brand of diapers she uses. NICU life is confusing, terrifying, and I can’t do anything to help my daughter. But my nurses often told me just being there, talking to her and holding her was the absolute best thing for her health. I don’t know how true it is, and I don’t even care. Being reassured that I played some sort of positive role in her life was the only thing I need to hear in the NICU.


 

[RELATED] 13 things you don’t know about me (getting personal)

As a preemie parent, we KNOW we are being too sensitive, and we really do understand you are (probably) speaking with good intentions. But unless you’ve spent time in the NICU, you don’t have any idea how someone else is feeling. Limit your observations, silver lining comments, and questions. Speak with intention from the heart, and offer your shoulder (or your infamous casserole) and let the preemie parent in your life come to you instead. They will love, cherish and respect you all the more in the end.

ArianaDagan

 

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