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Thursday, February 10, 2011

For What It Is Worth

I've seen a bunch of posts lately on other preemie blogs and forums about "What Not to Say" to parents of preemies. While I think these posts are probably warranted, I'd rather focus on things people should say to parents of preemies. I'll throw a few DO NOT say this in there for good measure, but I'd like to keep it positive.

First, when the baby is born, ask questions. This is new, uncharted territory for both you and your friend/family. But before you ask about the baby, ask about them. Ask how they are handling things. Not "Are you OK?" because, believe me, they aren't OK. Ask how they are handling things as in "Do you want to talk about it? Do you want to sit in silence? Do you want me to do your dishes or your laundry or...? Do you want me to tell other people? Do you want to hear congratulations? Do you want balloons and flowers? Do you want me to field questions from others? Do you want me to not talk about it? Do you want to talk about it? Do you want to call me when you need me or should I call you each week? Do you want me to leave you alone?" Everyone deals with this differently. Everyone. Some people love hearing congratulations. Some people hate hearing congratulations. So ask. And know that they might not have an answer for you, be prepared for that as well. They might change their mind next week. But asking them gives them control over your interactions. And they need to be able to control something.

Second, ask how the father is doing. Father's get left out a lot. But they are grieving and struggling the same as a mother, and they need support. Don't forget about them. They will deal with things differently, but they are still dealing with things.

Third, acknowledge the situation. So often people were uncomfortable with the reality of Charlotte's birth that all they could do was talk about what a fighter she was, or how well she was coming along. Sounds good, right? It is... except for those days that the worry and the stress just get too much. On those days, all parents need is for someone to acknowledge the fact that things are rough. Too often, in an effort to uplift and keep the mood light, the fears and very real emotions of parents are pushed to the side with success stories. Really, all that parent wants is for someone to say, "It's OK to feel the way you are feeling. Really, things are hard, and this just isn't fair. You shouldn't have to go through this. I'm sorry you are meeting your child this way." Otherwise, the parent is stressed and depressed and on top of it, they are being told that they are feeling improperly, that their emotions are not valid, and that they are failing their child. Don't dwell on the situation, but recognize it. Address it.

Fourth, once the child is home, make sure you still check in. There are days that I wish we could be back in the NICU, because being home, it's hard. Really hard. OK, so I don't really want to be in the NICU, but still. It's hard. Things are not necessarily all better now that a baby is home.

Fifth, re-evaluate. Remember that conversation you had at the very beginning? When you asked how they were handling it? You should be re-evaluating that situation every-so-often. You know your friend/family member best, but make sure you aren't basing your interaction off of old information.

OK, for the Not-to-Say crowd, here are some things you might want to avoid, unless you really, really, really know this person and/or they are the ones to bring the topic up.

Don't ask about milestones. Believe me. That parent is obsessed with milestones. Celebrate with them when their child reaches milestones, but don't ask if they are meeting them. A preemie parent will let you know, I promise. They don't need to be reminded of things their child isn't doing.

Don't mention your second cousin's husband's hairdresser's dog walker who once had a preemie and their baby is now a football player. We've all heard the stories. We know. We get it. Preemies turn out to be fine all.the.time. But this is our child, with our difficulties, with our complications. And those stories, they really get old. Let the old ladies in the grocery store tell them to us. Because, honestly, we hear them everywhere.

Try to avoid saying things that you wouldn't want to hear, such as "Was it someone's fault that the baby came early?" or "Way to keep your baby alive!"
Mostly, be honest. With yourself, with your friend/family member. Say, "I'm not sure what to say," when you are at a loss for words. Most likely, that parent is at a loss for words as well. No one is really prepared for that kind of situation. When you want to ask a question, and you aren't sure if it's appropriate or not, just say so. A simple, "I'm not sure if this is the right way to say this" or "I'm not sure if I should be asking this or not" can defuse a situation, and lets the parent know that your intentions are good.

Because they are, right? Your intentions are good?

You'll be alright then :)

Edit: Are you a preemie parent? Add what you did or didn't want to hear from others in the comment section. I'll organize them all and make a "page" section that can be shared. Are you a friend or family member of a preemie? Comment on what we as preemie parents can do to help you know how to help us. Sometimes we need guidance as well. It takes a village, right?


  1. That's a great post. When our LO was born, we didn't hear from a lot of people- even close family members. I think they didn't know what to say. It hurt, it still does sometimes but I think they did not know how to handle it. I found myself protecting them as well- not sharing the difficult pictures: on the vent, swollen after surgery, the scars. Thank you- I have really had some self-reflection from this post.

  2. I love this post too. Here's a couple things I could add:
    DO offer support for the older sibling, if there is one. We are forever grateful for the friends and family who pitched in and helped take care of our Lucy while Daphne was very sick. There were offers of playdates, sleepovers, and just some fun company while we, our parents, were too exhausted, sad, terrified, to entertain a 3-year-old.
    DON'T dismiss your friend and he/she says that the baby will not catch up by two. Just because some preemies do, it doesn't mean that theirs will. They know their baby and his or her circumstances best.

  3. amanda,
    as i was thinking about this, i thought how any new (dare i say uncomfortable for some) situation (be it preemies to illness to even death)is often hard to address, so i think your post is great and so applicable to so many in so many ways. thanks for the insight and suggestions. :) as always, you are the best!

  4. The things that meant the most to me were acknowledging my older son and how hard things were for him. Also sending him special things, especially things he could do with me. I was the person that he needed the most but I didn't have the energy to come up with ideas and I was pumping all the time so it was so nice when a new lego set or coloring stuff arrived-- stuff that felt almost zen for me to do but were all about him.

    I loved getting a pink baby card with just a little, thinking of you, congratulations, let me know how/ when I can help message written inside.

    I couldn't have lived without my flannel bathrobe that I had for kangaroo care in the NICU. It made it feel less medical and more cozy for me. I recommend that to any NICU mom!

    The hardest comments were the ones that were trying to be funny... nothing about this was funny... The worst was, You could have just hired a night nurse if you wanted to sleep through the night, it would have been cheaper than the hospital you know!

    Just because we are home does not mean everything is fine-- it really isn't. We still need help with our son. We still need to be able to vent. We are still exhausted. We are still in shock. In some ways our emotions are more raw a year out then they were when we were in the NICU. Please don't point out how it "could be worse" or say everything is fine now.

    Lastly, be aware of the family's religious beliefs. I loved when people prayed for me because they were sending positive energy for my baby into the universe but I wanted to scream when I was told "God won't give you more than you can handle" or "God has a purpose for this child" or "It is by the grace of God that she is alive and thriving" or "God chose you to be this child's mother". All of those things make ME feel like God is vengeful because no God that I believe in would put a child or a mother through this hell. I know some people find comfort in that so all I'm saying is know your audience :)

  5. I forgot the most important one-- shown in research even-- Dad's have a harder time and are more likely to suffer from PTSD after the NICU stay. They hold everything together. In our case, he did most of the phone call fielding, updating, talking to doctors etc... Fathers are more likely to try to go back to work etc... It is hard on them. Check in on them, take them out for a beer, meet them in the hospital coffee shop. Listen to them, let them talk about it.

  6. When CA was first born, I didn't know if I should always ask about how she (and the rest of you) were doing, or if I should leave it alone and give you a break from constantly giving updates. But at the same time, I didn't want to ignore the situation and pretend like it wasn't happening, because it obviously was and it was a large part of your life. You do an amazing job keeping the blog updated, so I always try to read it and stay updated myself. That way, I don't have to always ask you, or I can ask more specific questions. So thank you, thank you for investing so much time into this blog. It's a great help for me and for so many other people. I hope it's been a good therapeutic outlet for you, too.

  7. Let's see, some of the things I didn't like were the hospital staff calling me "mom" and my husband "dad." It drove me CRAZY!!! I figure if your kid is in the NICU for 5 months then staff should make an effort to learn names. After all, I am my KID'S mom not yours!!! Looking back on it now I should have said something. Ah well :).
    I also didn't like the my horror story can top yours. Someone had the nerve to do that to me the day my kid was getting CPR!! Her daughter was perfectly healthy and running around. I was so mad at her! Grrr... :)
    The best things? My friends were WONDERFUL. I think when people just step in, work out a schedule of care, and carry it out it is the best. No questions asked. Start with the food. Always the most important in my book. My dear friend kicked us out of our kitchen and proceeded to make us the best quesidillas we have ever had before or since.
    I agree that getting the kid home is a whole different journey too. The milestone thing? Oh yeah, I have been there too! :) My kiddo didn't meet any of them on time. I don't like milestones or percentiles.

  8. This was so perfect! You hit every point. My favorite is the one about someone who knows someone whose cousin had a baby early and now they are just great. Being in the trenches right now of life with preemie in the NICU I am so sick of hearing that!!!!! Thanks for this, you made me smile!

  9. When I'm having an off day, sometimes when someone tells me about a preemie who's "just fine" I want to list all the preemies I know that died. So, there's a "what not to say" for the parents of preemies themselves! (I've never actually said it, except maybe once to my Mom.)