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The NICU, Part 3: What not to say to a Preemie parent

Note: I’m indulging in a not-so-skeptical post today, but I’m including Star Wars Lego pictures, so that makes up for it a little, right?

When my children were in the NICU, many people were often at a loss for what to say, while others spoke without thinking. Sometimes, that resulted in comments that ranged from hurtful to funny, and we would laugh darkly about them in the parents’ lounge. Eventually, I compiled a list of the most ridiculous.

It’s hard to know what to say to a parent of a preemie, but if you haven’t made any of the comments below, you’re off to a pretty good start.

They just need to grow, right?
It’s never a matter of just growing. It is a slew of body systems that just don’t work, and they continue to not work as well as those of term babies for years. The real question here is what needs to happen before your baby can come home. So ask if you want, but be prepared for a long answer.

(pic: Kristina Alexanderson. Flickr)

(pic: Kristina Alexanderson. Flickr)

Did they live?
Seriously? Our social worker asked this a day after my sons’ birth when their probability of survival was still around 5%, and it was hard to hear. Asking how the babies were doing would have answered the same question more kindly.

Oh my god! Will they be ok?
Really? Were people seriously asking someone who’s baby is in critical care to reassure them?

I’m sure he’ll be fine!
No, you’re not. Neither are the trained specialists working their asses off to keep our babies alive. I think the word people were looking for was “hope,” as in “I hope he’ll be fine.”

“Enjoy sleeping while it lasts!” or “You’re lucky that you get to ease into parenting–no late nights for you.”
I had two children. They were both in the intensive care unit of the hospital. How much sleep did people seriously think I was getting? Add to this that for some of the time a baby is in the NICU they are frequently fighting a life-or-death struggle, in which case sleep is not on any parent’s mind.

I wish I had nurses to change my baby’s diapers!
First, don’t get me started on how this minimizes the difficult work that nurses do keeping babies alive, because that rant could go on for days. NICU nurses are a breed apart.

Second, changing diapers was the only time I got to touch my babies. Seriously, take a moment to remember holding your baby, brushing your child’s hair back from his face, kissing her forehead. I couldn’t do any of those things. I spent 8-12 hours each day in the NICU for the chance to maybe get to touch them both once, which happened only when the nurses were taking their vitals and changing their diapers. If the nurse let me, I got to help. If the nurse was in a hurry, or a baby was having a bad day I’d miss out on my only chance for physical contact with my baby that day.

(pic: Kristina Alexanderson. Flickr)

(pic: Kristina Alexanderson. Flickr)

A least you don’t have to worry about the baby weight.
Talk to most preemie mothers, and they will tell you that we would gladly get big enough for our own orbit if it meant their babies did not have to go through this hell. And yet I heard this comment over and over, along with its cousin “wow, I’m surprised you haven’t lost the baby weight yet. You were barely pregnant” (bonus points for fat-shaming, there).

You’re so lucky you didn’t have to deal with bloating/incontinence/stretch marks, during that 3rd trimester!
I get it, the third trimester sucks. Does it suck worse than losing your baby? No. Does it suck worse than REPEATEDLY watching people resuscitate your child? No? Does it suck more than watching your child fight for each minute and hour on this earth? No? I could go on. Easily.

(*gasp*) You’re not breastfeeding? That’s tragic! (or “The golden hour is SO important!”)
I am a huge fan of breastfeeding, but it’s important that breastfeeding advocates understand that micro-preemie families have a much higher bar for “tragedy” than that. As for the golden hour, that ship has long sailed. Keeping comments about breastfeeding neutral or non-judgmental (“So, how does nutrition work with preemies?”) would have been better.

I would NEVER feed my baby formula! (or “I can’t believe your letting them give your baby formula” or “Formula is poison!”) There is a whole movement of people who think doctors and hospitals are shills for formula companies and that all formula is filled with deadly chemicals. The truth is that micro preemies only survive to be big and healthy enough to breastfeed if they get weeks of TPN (Total Preemie Nutrition), which is full of those scary chemicals. They get breastmilk fortified with formula through tubes long before they breastfeed. By the time you’re discussing feeding a preemie, that child has been ingesting chemicals for weeks if not months.

“I couldn’t do that. . .I just don’t trust doctors.”
First, you probably COULD do that because when you’re in the situation, you have almost no choice. Sure, there were the babies whose parents avoided the hospital like the plague, and in many families (like ours) one partner was rarely present, but for the most part once you have a kid in the hospital, you do what you have to do.

Second, as someone who has to put all their trust that those doctors will keep their kid alive, perhaps a preemie parent doesn’t need to hear about hatred of doctors, modern medicine, or horror stories about either.

“Go home and get some sleep.” or “Do something to take your mind off it!”
I’m sure this is said out of concern or love, but for many NICU parents, the world narrows down to the small space next to the isolette and time shrinks to only the present. Being any further away physically just means you’re less likely to be there in an emergency or if your baby passes away. When your child lives breath to breath, thinking about the future is scary and sad. Oh, and trust me. . .nothing takes my mind off of my child.

The opposite of these statements is equally unkind. Some parents have a difficult time at the NICU, and prefer not to be there every minute of every day.

(pic: Kristina Alexanderson. Flickr)

(pic: Kristina Alexanderson. Flickr)

This is all part of God’s plan. or “God wouldn’t give you what you couldn’t handle.”
Really? so because God thinks I’m a  tough cookie, he put an innocent baby through months of misery. How is this reassuring?

What happened? (or “What did you do wrong?”)
It still floors me how often I heard this question. There are many reasons a baby comes early that it’s tough to guess. Further, NICU moms feel guilty as it is. Sure, the guilt is completely irrational in most cases, but it’s still there. This comment comes off as ignorant to the point of being funny when people add things like “you shouldn’t have gotten that flu vaccine!” or “I would never run while pregnant.”

“They say the best things come in small packages!”
Don’t minimize the consequences of being a micro-preemie. It’s just not helpful. Twenty-one months later, my smallest son still can’t manage to get on the height and weight chart for his actual age. I’d give my eyeteeth to get that “small package” to grow a little larger.

“I know what I’d do. . .” (or any criticism of the parent’s decisions)
You’re gonna have to trust me on this one. You don’t know unless your child has been in a life or death situation 24/7 for months. You really don’t.

(pic: Kristina Alexanderson. Flickr)

(pic: Kristina Alexanderson. Flickr)

When will they be home?
Really, when you’re talking about micro preemies, that question for the first few weeks is “will they live?” Which means you should probably not ask this question at all.

Try this instead: “Tell me about him/her.” (really, even very young babies have personalities that shine through and do goofy things. I have a son who somehow managed to pee on his nurse through a porthole. . .twice. . .in one day. Give the parent a chance to share those stories with you.)

But they look so (sick, small, red, skinny, scary)!
Yes, yes they do. This was annoying to hear, but so much better than the face people made when they looked at pictures of a skinny red preemie in an isolette (or when they cried. . .that was just awkward).

My son was a preemie too!  Born at 37 weeks, he had to spend 3 days in the NICU.  I totally know what you’re going through.

I am so sorry that you had to be a NICU parent, but 37 weeks is only a preemie under guidelines designed to discourage doctors from performing c-sections of convenience.  So unless there’s a life-threatening addendum to that statement (“because he needed heart surgery”), it’s not the same. That doesn’t mean the parent can’t sympathize, since any birth complications are traumatic. Just be ok with the fact that it’s not the same. I am fond of the phrase “that’s a whole different kind of hard” because it’s true.

(pic: Kristina Alexanderson. Flickr)

(pic: Kristina Alexanderson. Flickr)

“Oh please! People have babies early all the time.”
Yes. Yes they do, and even with amazing medical care, most babies born at 24-27 weeks die. Some people suck. Don’t be one of them.

Isn’t it hard to be back at work with your baby in the hospital?
Yes it is, and this is probably not the best thing to say to a parent trying to hold him or herself together until the end of the work day.

What will you do if he has (awkward pause) problems?
I’ll be his mom. Really. What do people think preemie parents are going to say, that we’re giving them back?

And my personal favorite only goes to preemie parents of multiples: “Well at least you have two, right?”
If I’m interpreting this correctly, they were saying that I was lucky because if one baby dies I would still have the other. WTF? I heard this more than once, and never did come up with a snarky or clever reply.

Of course, if you’re reading this, chances are you’re the kind of person who wants to say or do the right thing, for a friend or family member who’s become a preemie parent, which means you probably won’t say any of the thoughtless comments above.

So, what should you say to a parent of a micro-preemie?
I don’t know, but here are some ideas.

When you are faced with a photograph of a preemie (or any other sick child) please look past the medical equipment and see the child/baby. When in doubt, do what you would for any other parent: tell us our kid is cute/beautiful/strong. . .because they are.

Sometimes the enormity of a newborn in such a frightening position is overwhelming but, please know that however scary it is for you, it is much worse for the parent whose child is in the hospital. Just acknowledging that the journey is tough, and ensuring that the parent knows that you are there for them during it is plenty. Other than that, be there. Words aren’t important; your presence (in person, via telephone, text, Facebook, Twitter, or email) is.

This is part 3 of a series on being a NICU parent. Part 1 can be found here, and part 2 can be found here.
All images in this post are by the talented Kristen Alexanderson, and can be found on her Flickr page. Featured image is by Andre Mouraux, from his Flickr page.

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Deek

Deek

Deek lives with her husband, twin sons and two cats in the northwest. She teaches and writes about parenting in the NICU, her experiences as a parent of micro-preemies and skeptical parenting.

15 Comments

  1. August 11, 2014 at 8:22 am —

    Having a preemie made me super neurotic for the first few months, especially (ironically) after she got out of the NICU. The worst comment I got was from a family member who said, in response to my explaination why I was still using a monitor after 4 months, “well this is why people usually have more than one child.”

    • August 11, 2014 at 8:44 am —

      Are you serious? I have to wonder sometimes if people hear themselves talk.

  2. August 11, 2014 at 10:50 am —

    I’m really sorry , I hope things have been getting easier for you both. My daughter babysits for a family whose daughter was premature, she says the question peoples ask the baby’s dad (baby’s mom passed away a month after she was born) are sometimes ridiculously callous/thoughtless. I don’t understand why people would not stop and think about what they are about to say to the parent of a very seriously ill child/children, who is in for a long hospital stay…

    • August 12, 2014 at 10:10 pm —

      Thank you, things are going pretty well. I can’t even imagine the ridiculousness your daughter hears. Part of me wonders if the issue is that people are at a complete loss about what to say when a “happy” response won’t do, but neither will a sorrowful one, so they blurt out something.

      • August 13, 2014 at 2:29 pm —

        I’m sure part of it is not knowing what to say or how to help, thats why when friends are having babies and people don’t know what to get for a gift I say, offer to babysit their older kids, or help them out by cleaning their house or maybe if you can get a few friends to chip in get them a month or two of maid service. Keep their pets for a few weeks or walk their dog or clean the cat box, go to the market for them, there are so many things NICU parents could use help with. And some people get upset when they are not allowed to hold/play with or even be around the baby when she comes home (Ummm yes your sniffles are a big deal, a cold could kill her). The baby’s dad was really strict about not letting anyone but a select couple of people handle her for quite a while. My daughter was actually there to take care of the 3 other kids, the dad did not want to send the 2 toddlers to daycare for a while as anything they caught and brought home could be very dangerous for their baby sister.

  3. August 11, 2014 at 2:38 pm —

    Great post. Was one of the roughest times for me and my preemie was only 8 weeks early and had a relatively short hospital stay. No major problems.

    • August 12, 2014 at 10:03 pm —

      I’m glad you had no major problems, but sorry your preemie had any nicu time; 8 weeks is still really early!

  4. August 11, 2014 at 3:22 pm —

    That sounds really tough. I get what you mean about wanting to touch the babies all you could. I ask my wife every morning before I go to work if I can change our baby, in part to help her, but largely to have that moment. It must have been so much worse with them clinging to life.

    It’s kind of woo, but sending thoughts of love to your family. Thanks for writing for GP, and sharing your experiences.

    • August 12, 2014 at 10:05 pm —

      Thank you, Hanoumatoi. We’ve been really fortunate from start to finish with this. The boys are 21 months now, and are doing really well. It’s nice to see someone else sees diaper changes as more than a chore.

  5. August 11, 2014 at 4:05 pm —

    *hugs*
    Your comment about people asking you for reassuance reminded me of something I read by the spouse of a cancer patient about venting outwards, not inwards, the gist being that if people want to personalize someone else’s pain to process it, fine, but for the love of maude, vent to people who are farther from the center of the storm, not the people closest to it.

    • August 12, 2014 at 10:06 pm —

      vent outward. . .that is so simple, and makes so much sense,

  6. August 13, 2014 at 6:44 am —

    Eeek. Some of these comments are unbelievable. Hard to find the words.

    I have a question for anyone who has experience with NICU. I was thinking that I could donate breastmilk relatively easily, and the collecting agency says it would be processed and form the basis of the formula for preemies in hospitals. Will it actually be used (I live in the UK) and does it have health benefits? I would be willing to give it a try if I knew it was really useful.

    • August 29, 2014 at 12:11 am —

      Hi vvvv, I can’t answer this for the UK, but I know that in the US, donor milk is wonderful–but often prohibitively expensive. Our insurance rarely covers it, even though donors don’t get paid. Some moms donate informally to friends to get around this. I hope that the situation is different in the UK. I think that donating breasmilk would be an incredibly generous act.

      As for whether it’s used–I know of several mothers in our NICU who used donor milk when the stress of being a NICU parent prevented their milk from coming in. The NICU staff calls it “gold,” and it’s the preferred nutrition for preemies (fortified for additional calories) once they can tolerate it. For some late-term preemie mothers, the donor milk was only used for a few weeks while their supply kicked in and before their baby was able to latch.

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