DISCLAIMER: The following information comes from my discussions with other preemie mommies as well as my own personal experience. If you find yourself upset, offended, etc. from reading this, well…we can’t be friends. Hah..I’M TOTALLY KIDDING. If you know me in person, then you know I am just kidding. I welcome discussions about things, so COME! SIT! LET’S TALK! 🙂
This topic has rang true for me throughout these past three months. I do believe that people, just. don’t. get. it. That is, unless you have had a preemie baby in the nicu then you will not understand. I know most of peoples’ comments are not ill intended, they still sting and sometimes make my blood bubble out of pure human reactivity. Because I am always for education, here is my due diligence in teaching others what not to say to a preemie parent so I can hopefully prevent some awkward silences, broken friendships, and further distress to preemie parents beyond what a nicu stay already entails. So if you care at all, don’t be a jerk and read this, k? 🙂
SO WHEN IS SHE COMING HOME?
First of all, I know people may genuinely care about this and are curious. But, unless you are a real REAL close friend or family member, just save yourself. Because in reality, said preemie parent is dying to know themselves!!! And we don’t have the energy to continuously explain every detail of why they are not home. Discharge dates are not discussed in the NICU unless it’s imminent. Even then, that can change instantly if the baby just looks at the doctor differently. So, asking this question really just reminds said parent about how much of this sucks that they don’t have their baby home and how out of control they feel. INSTEAD…just know that if there was a discharge date, said preemie parent would be telling you.
YOU ARE SO LUCKY YOU DID NOT HAVE TO DEAL WITH THE LAST FEW MONTHS OF PREGNANCY, THEY SUCK!
Oh, yeah? I am pretty sure they cannot suck more than having to worry if your child is going to live each day, leave them with strangers in a fragile and painful state, live in a transient state trucking to and from the hospital everyday and watching your baby being repeatedly stimulated to breathe. So, please do not compare stretch marks, bloating, swollen feet, achy joints, etc. with nicu life. We would give ANYTHING to have had our babies grow inside of us longer. Period. INSTEAD…stop trying to make light of the situation and learn to deal with uncomfortable things, such as the nicu…do not do this at the expense of these fragile families!
WHAT HAPPENED? WHAT DID YOU DO?
I feel like I shouldn’t even have to explain this but I do, because people ask this, all. the. time. Let’s just clarify that prematurity is an idiopathic issue, meaning it occurs for many reasons and yet no reasons at all. It is not because the mother did not eat, it is not because the mother ran or exercised. So many mothers who have done drugs and drank while pregnant give birth to full term babies, so please do not categorize this unfortunate occurrence of prematurity with poor decisions and throw around some mom shaming. It is insulting and plain hurtful. INSTEAD…ask, Were doctors able to pinpoint a reason? That is if you are genuinely nosy, I mean curious.
I’M SURE SHE WILL BE FINE.
Um, no you are not. Not even the medically trained doctors and nurses can say that, what makes you think you can? This is equivalent to the “don’t worry, it’ll be fine” again, you don’t know that and saying so just aggravates. INSTEAD…say Hope. I hope she will be fine, because that is all we can do, and it’s way more powerful to have others on our side hoping with us.
ENJOY SLEEPING WHILE YOU CAN!!
This couldn’t be further from the truth. Us NICU mommies are up in the middle of the night pumping milk for our babies, because doctors drilled into our brains how it is the BEST thing you can do for your baby (I won’t even go into what it is like for moms who cannot/unable to pump), so maybe we don’t get up to feed our babies, but we are making food for them. We also don’t sleep well because we are up worrying about our babies or we lose sleep from going back and forth to the hospital and all that entails. Saying so minimizes our current struggle.
(Gasp) YOU ARE NOT NURSING??
This one gets me. How can you even be confused/shocked/bewildered by this notion? Preemie babies are usually born without the skills to even breathe, let alone suck and swallow, so nursing is not even an option for most. Even if the baby did, whether a woman nurses her baby or not is really none of your business.
LET ME KNOW IF YOU NEED ANYTHING.
Famous last words. Don’t get me wrong, I know most people say this because they want to help so they offer…help. The problem is, it is a real broad serving of help and most, if not all, people I know would be too humble to ask. Not too mention most preemie parents are barely getting through each day, let alone knowing what they really need. INSTEAD…say what day is good for me to help come by to get some housework done? Do you have any allergies..? I want to cook a meal for you.
I COULD NEVER DO THIS.
That’s wrong… because, well….you could. If you had to. And that is exactly what preemie parents are doing. Doing what they have to. They really don’t have a choice. INSTEAD…express your admiration of their doing it and don’t insinuate this is all a choice because none of this would be anyone’s choice.
GO HOME AND GET SOME REST. TAKE CARE OF YOURSELF.
What. This doesn’t even really apply here. Going home doesn’t equate rest. See above. There are tons of house chores that have gone to the wayside, still the normal daily to-do’s, spending 3+ hours a day at the hospital, on top of finishing getting the house ready for the baby and working (yeah, many might lose their jobs and/or become homeless if they do not go back to work). There honestly isn’t enough time to “get some rest” or “take care of yourself” though we all would die to do this. INSTEAD…ask how we are doing and offer help to get the to-do’s done so mommy and daddy CAN rest or take care of themselves.
THIS IS GOD’S PLAN, HE WOULD NOT GIVE YOU ANYTHING YOU COULD NOT HANDLE.
Another misled attempt at making another person feel better. I get the sentiment behind this, “let’s look at this in a more positive light”. But, more often than not, surges of anger may rise. Why would God make me go through this? What did I do to deserve this?!!!?
THE BEST THINGS COME IN SMALL PACKAGES.
Just. No. Please do not try to make light of this situation. These “small” packages can’t breathe, eat, or live on their own, so no… these aren’t the best right now.
WHY ARE YOU MAD/SAD/ETC? THIS [prematurity] HAPPENS ALL THE TIME.
This one literally makes my blood bubble. First off, this approach totally invalidates one’s feelings. So just because prematurity happens, I shouldn’t be upset that I did not get to birth a healthy baby? I shouldn’t be sad that I can’t take my baby home? I shouldn’t be worried sick that my baby might not make it? INSTEAD…just listen and acknowledge their struggle.
ISN’T IT HARD TO BE BACK AT WORK?
You are absolutely right. It is really hard to get up every morning and report to work knowing your baby is lying in a hospital bed fighting for their life. Even worse, not being able to afford to not go to work. It isn’t even a choice. So, yeah, it’s really hard. It is even harder to be reminded of it because we are just barely functioning. INSTEAD… praise them for their strength or whatever. Just don’t reiterate how hard it is unless you want a river to flow.
DON’T BE SO PARANOID ABOUT GERMS.
… this is just ignorant. I don’t mean that to be offensive by any means but it really is a demonstration of not knowing better. Preemie babies have barely no immune system, so the common cold or the “normal daily” bacteria on your hands or face can wreak havoc on a preemie’s body to the point they may be hospitalized, end up with permanent damage/delays or even die. Not to mention these preemie parents may have witnessed their babies have infections and/or have spent countless minutes washing and sanitizing before they see their babies. So yes, this “paranoia” is needed.
I KNOW EXACTLY WHAT YOU ARE GOING THROUGH.
No, ya don’t! Unless you have had a preemie in the nicu, do not do this. Even if your baby was “two weeks early”. It just does not help. INSTEAD…ask about what they are going through and just listen.
Last but not least….
LET ME KNOW WHEN I CAN COME SEE HER.
This one is confusing. So many people will offer to see one’s preemie in the nicu. Yet, I don’t know why??? Is this for the parents? Is this for you? Because this is definitely NOT for the baby. The baby actually needs the least amount of visitors. Remember the immune system talk? I get that it might be a gesture of kindness or something, but it is actually a burden for most preemie parents to have to say no, you may not come view my baby like it is a three eyed puppy. At this point you aren’t even asking if you can see the baby but you are basically telling them that you are, just let me know when it is convenient… Newsflash, there is no convenient time right now when they are in the nicu. I will also add that during this tough time in the nicu, it can be a very vulnerable and intimate space for many and some may not want others be around, whilst others crave it…so ask what they want/need! Ask for pictures, ask them to tell you about their baby. There are other ways to express your excitement for the new baby or to spend time with the parents. Ask to hang out with said parents because odds are you haven’t really hung out with your preemie-parent-friend. But, keep in mind this “hanging out” is going to be different now (more to come about that another day). Expect preemie parents to ramble about milestones, like getting to wear clothes, going to an open crib, or breathing all day without an episode, because these are all things term-baby-families take for granted.
Important to note that IF you have already committed one of these, know that if said preemie parent is still talking to you, then Congratulations!! You have got some awesome traits going for you, just make sure to not repeat offend, ok? You may run out of your luck. JUST KIDDING, but seriously…. just be aware of how your words might affect your preemie parents.
If you just noticed that said preemie parent does not talk to you anymore, well….an apology is probably necessitated if your relationship is to be saved.
So, there you have it. The most often said phrases to a preemie parent that probably should not be.
All food for thought. And all from a place of caring to all of the preemie families out there. 🙂
Sincerely,
A tired preemie mommy