Dear New Preemie Parent

When Owen was born, my biggest pet peeve was when people would say things like;

“Don’t worry, he’s going to be okay”

Or Worse,

“Most of these baby’s turn out just fine”

I know these people were trying to be supportive and they were at a loss for words as to what to say and, I don’t fault them for trying.  At the same time, I wanted to scream the statistics at them.  I wanted them to be honest and really understand what lay ahead for our family.  The truth is, in the best cases, mirco preemies have challenges for years.

Here’s an idea of what I wanted them to say.  It’s what I would say, to those with a new preemie.

Dear New Preemie Mom and Dad,

I wish your pregnancy could have ended differently.  I really wish I could say, “this is going to be easy”.  I wish I could answer all the questions that you don’t even know that you’re going to wonder about your baby.

 

Your child is going to have to fight with super human strength.  You are going to stand by and watch and pray (or hope or meditate) and sometimes you may have to beg.  Sadly, you have no control over how this will end and, honestly, how it ends may not be “for the best”.

 

You are going to feel guilt and anger and helplessness and jealousy and mostly…deep, profound sadness.  Some days you’re not going to be sure you can take anymore… “this is just too hard”.

 

And, it is.

 

However,

 

What I can tell you, is that even when you’re feeling lonely, you are not alone.  The mothers and fathers standing over the beds around you, are here with you.  The families that have been down a similar path ahead of you, want to make it easier for those behind them.  And the community of family, friends and strangers will overwhelm you with their kindness.

 

While the hurt that you’re feeling will probably never fully go away, you’re also going to cheer for things you never imagined worthy of a cheer – Open eyes!  Vent setting reduction!  A POOP!  You’re going to feel gratitude to those that work to help your child.

 

You are going to find strength in yourself that you never, before, knew existed.

 

More than anything, be prepared to be amazed and inspired by the, seemingly, helpless, child in front of you.  These babies are proof that miracles happen.

 

It is okay to hope.

What would you add?

© Copyright Tatum, All rights Reserved. Written For: Ain't No Roller Coaster

49 thoughts on “Dear New Preemie Parent

  1. This is wonderful!! I hated those comments as well…especially during my pregnancy. Everyone would tell me everything would be fine, and it wasn’t. I also hated the my sister’s mother’s cousin’s brother twice removed had a preemie and they turned out
    “normal”. Ugh, but this is a wonderful letter!!

    • I hated those comments too, Jana! Today, I’d like to ask them, “what did it take to get to your version of ‘normal'” We can’t poo-poo, the years and work that goes into helping our children get their best chance.

    • loved this letter, but really got a chuckle out of your comment Jana…the sisters, brothers, cousins, uncles neice that turned out fine. I so completely agree with how annoying that was to hear!

        • Tatum – thanks for the link to her blog. I’ve been stalking it for a while and we’ve been in touch! I also stalk your awesome blog! I don’t have a blog of my own, but I’m mom to a 23 weeker who is now 2 and 1/2. Love this preemie community! Thanks for all your awesome insight…one of my favs was the post about the flu vaccine – thanks for giving me a new perspective!

  2. You seem to always post the *right* thing that I need to read on a certain day. Obviously not a new preemie parent but being Sammy’s NICU experience is a whole new ball of wax then Sebastian’s I feel like a new preemie parent at times. I needed to read this, thanks for posting it.

    • I agree, Nicole. The shorter, less complicated stay of Kellen was scary, but I felt like I was in uncharted waters with Owen. It makes me so happy to hear that, when I write what I feel I need to say others also get some healing.

  3. I always tell other mommies that they have to believe in miracles. I also hated the “it’s a roller coaster” saying as the people saying it had NO idea what we were experiencing. It also drove me nuts when people said a friend of a friend had a preemie and they were 100 lbs now or they are 3 and healthy.
    We did a lot of praying and a lot of crying and somehow we got through. The days drag on and the weeks fly by. I can’t tell you the exact day my son got off the vent but I can tell you that it might have been one of the happiest days of my life. Each and every day of progress made us feel blessed and the hard days we prayed and cried and waited for another happy day. I can tell you that I am not the same person I was before having a 24 weeker, I am stronger. Even though I cannot look back at our NICU pictures without crying, I feel so very blessed.

    • Thank you for sharing Ashley. It’s so affirming to hear other moms who share some of these same feelings about their preemie experience.

  4. You say it so well, Tatum!
    I never thought I was a control freak but spending so much time in the NICU made me want to control everything! “It’s like watching a plant grow” it is such a slow, delicate process and sometimes you wonder if it is even growing? And finally, he IS and without micro lipids 🙂

  5. Oh so perfectly written! what i would add is: i learned in the NICU that the human spirit is so strong. You truly never know how strong you are until being strong is the only choice you have. And believe me… you are strong!

    • Great add, Michelle – so very true. I know, I for one, have really appreciated having your notes, as someone who’s been there ahead of us.

  6. so well written! I also had mixed feelings when others told me that everything would be okay or that my daughter would be ok. I appreciated any support that was offered and knew that everyone meant well, but often I felt like no one understood the gravity of our lives. I on the other hand thrived by truly feeling like we would be okay. “okay” had a whole new meaning for me and evolved constantly, but took so so much comfort in convincing myself that things would be okay… whatever that meant then or means now. Ironically I wrote a post last night about being okay 😉

  7. Maybe add something about finding a bond with another parent who has a preemie. There is NOTHING like talking to someone that knows what you are going through. I found the mommy support group in our NICU 100% beneficial in me keeping my sanity which is why I think its important to have some one… anyone that actually understands.

    • Wonderful add Lori. The moms from the NICU are still such an important part of my life then and now. I think others agree too, because a post called The NICU Mom Bond has been one of my most read. You’re right, it should definitely be part of this letter to parents.

  8. I agree to this 100%. I HATED when people would say “Oh, they’ll be okay.” I wanted to scream back in their face “You don’t know that! You don’t know how things will turn out!” Instead, I always tell people to tell new preemie parents that their baby is in the best place possible, and that the nurses and the doctors are doing absolutely everything they can.

  9. One of the nurses told me once that she always told parents the NICU was like a rollercoaster, and then she stopped saying that. She said she stopped because rollercoasters are supposed to be fun, and the NICU experience isn’t exactly fun.

  10. I hate when people ask is he gonna be normal? Uhh well what’s “normal” to you or what you think is “normal” is NOT my normal so yes my son is normal. Their is no definition for a “normal” child. And I know these people meant well and didn’t mean for it to come out like that but sometimes it was rude and inconsiderate.

    • I agree, Jessica. I wish we could remove the word “normal” from language. Yesterday, I shared a great picture on FB that addresses this: Little Girl to mom, “Mom? What’s Normal?” Mom replies, “just a setting on the dryer, dear”. To me, the biggest point, however, is that you mention the challenge of balancing the knowledge that the speaker is not intending to hurt our feelings when they do it. For me, it’s been a matter of mood in how I respond. It’s hard line to walk.

  11. This letter is perfect! I wish I had something like this when we were in the NICU. Going into the unknown is such a scary thing, especially when your child’s life is at stake. Thank you for this letter, you did an amazing job!

  12. Hello my name is Jennifer and my daughter was born at 26 weeks and she has had over 10 brain surgeries 7 of which happened from April 2012 to July 2012…she has has multiple shunt problems ,failures and revisions …My husband were so tired of hearing that word “normal” it means nothing to me its just another useless word in the English language…Our daughter is now 19 months old and we still just take everyday as it comes our daughter has some sort of therapy everyday for about an hour she cant walk or crawl yet but we are grateful for for everyday we have with her ….she is so beautiful and i really like what i read here and i definitely ill be posting more and hoping i get to know everyone better,

    Jennifer Chaplin

    • Jennifer, Welcome! Your family has certainly been through the wringer. I hope you don’t have to see an OR for a long time. I look forward to hearing your comments and hope that you have the opportunity to meet some of the others. The goal for this space is to Celebrate, Heal and Connect.

  13. Thank you for this letter even though I’m not a new preemie mom. My Xander is 13 months old. And though he is doing “well” still has lung issues. Because he is so social and cute and now off the Oxygen, everyone including my family and partner thinks he is fine, and I’m overprotective. Which is funny because I am too tired to waste energy worrying over nothing.

    The most painful part of my “support” system now believing I am the problem is the loneliness and the lack of a 5 min break. My instincts are strong and are never moved by the comments and decisions and unrealistic expectations of my family. But it’s painful to always receive the covert message that my beautiful baby’s needs are too inconvenient to accommodate so they must not exist. That is the painful slap behind the “He’s fine” messages. And if I make the case for his needs, I’m left ALONE to deal with them justified by some case that I’m crazy, overprotective and obsessed first time mom.

    Considering that, I hope you can appreciate how grateful I for this community and opportunity for contact and support.

    Deeply grateful,
    Tamara

    • Tamara, thanks so much for posting that. My family has seen my six month old baby (26 weeker) twice in her six months. Socially, she is adorable, smiles, coos, and flirts with everyone. She is having issues or tight arms and tense muscles. She has BPD and ROP. (She was 26 weeks after all). Since they’ve all had term babies, they think it makes them the expert on my baby. That I am crazy that she is not “normal” yet or I’m being dramatic. My concern for my baby is dismissed while I have to listen to rambling stories about creaky joints. I just want to scream. Fortunately, my husband is supportive and shares my concerns. I am sorry you are going through that. It comforts me to know that I am not alone. I stopped by this page to show the letter to a new preemie mom… I guess I found something here for me as well.

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  15. This is a wonderful letter, so many times you feel alone while in the NICU, I am going to make sure that I pass this letter along. The NICU nurses and doctors were my family for 3 and a half months, I have to say that I love those people they saved my children more than once.

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  17. Oh how I love this post!
    Thankyou so much for writing it and I am going to share this around!
    I am mum to a 28weeker who is now 3 weeks corrected. It really hit home and I hope more people can read it and learn 🙂
    p.s. I have just started my own blog 🙂

  18. I’m so glad I found your website! I have read so many posts where I’m just nodding fervently while reading on my computer! I had a son born at 24 weeks and 5 days in October. He came home 7 weeks ago and I just started blogging our experience as parents of a micropreemie (handpickedmiracle.wordpress.com). I wish I had read this while we were in the NICU because it is such a lonely experience. I hope to make our micropreemie parenting experience less lonely and am trying to “meet” as many other MP parents as I can while we’re on lockdown! Thank you for your words and for speaking for so many of us who are still trying to find our footing and learning how to live after needing to survive for so long.

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