What I Wish Everyone Knew About This Preemie Life

Over the last eleven months of blogging, I have noticed a theme within many preemie bloggers’ reason for blogging.  We simply want people to better understand our journey.  For me, what I really ended up finding has been solidarity with other preemie families and a lot of healing through the process of writing and reading my thoughts in others’ writings. Those aspects of keeping a blog have been wonderful gifts and probably more healing than educating “the rest of the world”.

However, I can’t help but still wish for that original goal.  I do have some non-preemie readers, but the majority of this blog’s readers are other preemie parents.  If I had to sum it up into one list of things that I wish people knew about prematurity and being a preemie parent, these are my big ones.

Premature babies aren’t just smaller versions of full-term babies.  Premature babies are born sick.  By referring to where they stay as the “NICU” as one word, it seems that many people forget that the last three letters stand for Intensive Care Unit.  Prematurity, regardless of gestation, presents serious long and short term health and development concerns.

Every premature baby’s story is different.  Your sister’s best friend’s cousin may have had a 22 week 6 day preemie who was less than one pound at birth and is now a Rhodes Scholar and Olympic athlete…or maybe she’s “just fine now”, but that doesn’t in any way predict the outcome for any other preemie.  Preemie parents’ concerns and fears for their children’s immediate and long-term future are real.  You’re right, pondering on those concerns won’t change anything, but if you just brush the concerns under the rug, you’re not being honest, or don’t understand, the risks for children born too soon.

There is nothing magical about two.  Being born too soon is not something that is outgrown.  Medically speaking, once a child is past their due date, they are a “former preemie”.  However, that does not mean the baby has caught up and many don’t “catch up” at two, or ever.  One example is Owen, he will be two in 25 days.  He’s still on oxygen support, he does not eat, he does not walk, he does not talk, nasal congestion caused by teething requires breathing treatments.  He’s not all that unusual within the preemie world.  There are many premature children who are doing better than he and there are many that are not doing as well.  He’s not technically still a preemie, but turning two doesn’t make the impact of his premature birth go away.

Washing your hands is really easy.  I’m pretty appalled that I even have to include this point.  Just do it. It’s the most effective way to prevent the spread of illness and disease.

I am (over) sensitive.  The emotional toll of prematurity is significant for the entire family.  You may mean no harm when you complain about your last weeks of a full-term pregnancy, or use the r-word or try to tell me that I am being over-protective of my child, however, those are only reminders to me that you don’t, at all, get me or my experience.  That makes me feel lonely and sad and a whole slew of other emotions that I haven’t figured out yet.  Just like there is nothing magical in the child turning two, there isn’t some magical point when I become “okay” again either.

I’m not amazing.  I don’t deserve to be on any parenting pedestal.  Some days I’m a great mom, some days I pray that I didn’t just screw up my kids for life.  The tasks on my job description for mom may look a little different from many other’s but at the end of the day, I’m just doing what I need to do to give my kids’ their best chances.  Trust me, it’s what you would do too.

I miss you too.  Partly because of those extra tasks on the job description and partly because of my new emotional needs, I don’t get to see my friends as much now.  For those same reason, I do need to hear from you still.  Thank you for making the effort when it seems one-sided.  I like to hear about your life and not just talk about mine.  If you’re having troubles, I want to still be able to help you through them.  You may need to be more direct with your needs from me, but I am still here for you.  I value your friendship and am so thankful that you’ve stuck by me.

Other preemie parents, what would you add?  Also, I’d love to hear from non-preemie friends and families who follow this blog; what do you think are the key things you’ve learned that we preemie families might be so close to it all that we miss the lesson?

prematurity

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

64 thoughts on “What I Wish Everyone Knew About This Preemie Life

  1. As discussed several times….”They need to get sick to build up their immune system”. I just want to scream when I hear those words. I try and educate people as to why this is “not a good idea”, but it often falls on deaf ears.

    • Trying to explain that to someone who does not to be up all night for 24 hour breathing treatments for days and weeks on end is impossible. They will not understand.

  2. Thanks Tatum! I would add to the comments about outcome, “so and so being just fine now that she’s 5” etc. I want people to hear and understand that it’s OK if my child isn’t “fine”, its ok that he has disabilities. Please don’t feel sorry for him or us because of this. He is a happy charming kiddo who plays with friends, bugs his big sister and loves trains. If you only look at the disability you may miss seeing Drew.

    • Great add, Mandy! Please write a post for this!!!! Honestly, Owen is still in the “delayed” vs “disabled” stage and so, I’ve not had to get to this place. I’d love it if you wrote about it. I know I’ll need help processing it as we get there and would love to hear the rest of your thoughts on it.

  3. I have a 3.5 year old “former 29.5 weeker” named Everest. He had a slew of “NICU” issues, and has life long special needs because of them. I LOVED this post. Wonderfully written and true.

  4. You touched on everything, in my opinion. So well written, as always! I’m learning the hard way now that the emotional wounds inflicted by the prematurity experience don’t always heal so easily over time. Sometimes, the hits keep coming long after you’re home from the hospital. I think non-preemie friends and family all breathe a collective sigh of relief once a baby comes home, because they think the hardest part is over. But it’s not. We all know micro-preemies have long term repercussions that aren’t always obvious at first. When it becomes more and more apparent what those repercussions are, it’s heartbreaking. Like living the trauma all over again. I have found that to be a very difficult part of this journey. Sometimes, I just want to leave the prematurity behind us and pretend we all lead rosy, normal lives 🙂

    • Thank you Kristie. I agree, the continued issues are really hard for any of us to prepare for – it’s a different kind of hard and a lot people don’t know that. I kind of wonder if one day it will be part of “rosey, normal” but I know I haven’t gotten there.

  5. yet again, this is perfect. so incredibly perfect. one thing I would add is when people say (about the girls being in the nicu), “it will be over soon” or “this is such a short period in your/their life.” No, it’s not!! (but yes it is)… our kids will forever be preemies — that’s not something that will end

  6. Tatum, this is so well-expressed. You do an exceptional job at sharing your experience and helping those of us who don’t have first-hand knowledge of preemies be more sensitive and aware. Looking forward to seeing you after cold and flu season!

  7. Thank you for educating and enlightening me! I learn something every time you post! It makes me feel a bit closer with the miles between us. Honesty is one of our best “teachers”.

  8. My micropreemie is now 13 years old (wow!) but one thing that has really gotten our hackles up (it’s the one thing that drives my hubby crazy) is when educators/therapists/etc. call her a “typical preemie”. There is NO SUCH THING! She’s also autistic and there is no “typical” person with autism.

    To give your readers hope, this year was the first birthday where I didn’t think on her birth and NICU stay (21 weeks). I was so focused on how in the world she could be a teenager that I didn’t think on it. Hubby did, though, probably worse than most! She’s been a Daddy’s Girl from day 1! 😉

    [If you visit her site, please note I haven’t updated it since she was 5. Bad Mommy! But I was “blogging” before it was a word. ;-)]

    • I live hearing from moms further along in this journey. Thank you for keeping in touch with those of us behind you and sharing your story!

  9. Echo the comments that this was fabulous written and well captured! What i would add… my kids will always be preemies and i will permanently be changed by our experiences. They will always be preemies because they will always live with the impact of being born to soon – it isn’t something you get over and grow out of. Sonoma will always have cp and epilepsy, Sierra, while seemingly ‘unaffected’ will have something that will show up from her being a preemie. And their parents will never be the same – we have gained perspective, we have deep, deep love for them and it will always feel like yesterday that they were in those isolettes struggling for their lives.

  10. Try not to judge “stupid platitudes” too harshly. Most are probably said in love and are said because saying nothing seems rude and saying we love you and your kid regardless seems trite. I am sure many times they are said as an encouragement. Remember everyone wants a “perfect” baby and your little one reminds us how fragile that hope is and yes it makes people uncomfortable, so you hear platitudes.

    • Thank you, Lori. I agree and also know that even though I say I agree, I’m not always great at this. It all depends on where I emotionally at the time. It’s a good reminder. Just because people don’t know what to say doesn’t mean they are looking to hurt us.

  11. Thanks for the post! I Really enjoyed it. And ditto to what Mandy said, please never pity us because Jackson has disabilities! I can’t stand that!

  12. Well said Tatum!! I would also add that sometimes I feel like people are afraid to ask about Evan’s health or diagnosis and so they say nothing. For me, I am happy to talk about these things and actually find it healing to do so and asking shows you care. Just like any other mama, I love talking about my amazing little guy and gushing over his accomplishments!

    • Sara, I agree. People do act like they are afraid to ask questions, but like you I love talking about my amazing little man!!

  13. I am in awe because I’m the NICU nurse that wasn’t sure if your child would live til I came back for my next shift. I’m in awe because I know the battle is really just beginning when I send you home;-). Very well said. Especially the wash your hands part!;-).

  14. I think this is so wonderful; it’s as if you’re in my head. I am just about to start blogging myself (my son, born at 29 weeks, is 1 actual next Tuesday, with PVL, likely CP and infantile spasms) and I think I want one of my first posts will be about the difficulty I have with people telling me to ‘take each day as it comes’. What does this mean? What would this look like in practice? Of course we all take each day as it comes, and a heck of a lot tends to come parents of premmies (or preemies, as you say in the US). The implied criticism that we aren’t living life in the best possible way, that we shouldn’t look to the future makes me sad and sometimes angry. I have just as much right and need to look to my premmie son’s future as I do to his health, full-term, big sister’s even if they’re likely to be very different and no matter how much it hurts.

    Thanks for the blog. I avidly read it and hope you don’t mind a British interloper (who’s never met you or your family) commenting here.

    • Jennie, thank you for the comment and Brits are welcome! Also, Premmie reall does make more sense than preemie. Happy Birthday to your son! I look forward to reading your blog

  15. Just found your amazing blog. Looking forward to reading about Owen’s amazing journey. My daughter Victoria was born February 11,2011 at 26 weeks gestation. Prayers that God will continue to give you and your family strength and prayers for Owen. My big pet peeve is when parents of full term babies compare their development stage with my daughter’s and when they ask about the infamous % chart! Thank you for sharing your journey.

    • Hello, Ilu. Thanks for introducing yourself and Victoria. I agree. The comparison’s are tough…skills, size, sleeping, etc.

  16. My 25 weeker will be a year in April and I agree with everything you said. I do not know about you but one of the key phrases I have grown so tired of is “she is a preemie, and preemies are unpredictable.” Really? Somedays I wish our lives could be predictable.

    • I get a version of that. What we normally hear is, “there is what we expect to see and then there is Owen”. I normally tell the docs he’s just trying to keep then on their toes. However, I could handle a few predictable appts!

  17. Tatum – I know I’ve commented before, but you are an outstanding writer. I hope you will publish a book some day. Most of us can’t even begin to imagine what preemie families go through and I’m sure we make many ignorant comments. Know you are in my thoughts and let’s plan another visit when the weather gets warmer. We’re having Easter dinner at our house so have been digging through recipes. I so admire how you have handled motherhood given the many challenges you’ve had and continue to have. Someday Kellen and Owen will know how lucky they are to have you for a Mom! Hope you have a wonderful Easter with Kyle and family.
    Mary

  18. This is my first time to your blog. Thank you for writing exactly what is in my head. I have a preemie that is now 13 months and back in the hospital recovering from open heart surgery. I sent your entry to my family and friends and told them this applies to me in our situation as well. One question, what is the “r” word? Thank you again for your amazing words.

    Sarah

    • Sarah, sending healing thoughts to your LO. It’s nice meeting you, please let me know how your baby is doing as you get a chance. Thank you for sharing this post. R word is the derogatory use of the word retard. Hurts my soul whenever I hear it.

  19. I was just sitting down to write a post exactly like this when I came here and saw you had once again taken the words right out of my mouth! Thank you for putting it all out there, so honestly and so beautifully. I will definitely be sharing this and will let you know when I have my version of this list up on my blog soon. So many *hugs* to you as you approach Owen’s birthday!

    • Thank you! I look forward to hearing your take on this subject. The funny thing about blogging is there aren’t many knew thought just different approaches to sharing those thoughts.

  20. Thanks for writing what I still haven’t had the courage to write about on my own blog. But I did at least have the fortitude to share what you wrote on FB!! And I especially love the “washing your hands is really easy.” Why do people have so defiant about this simple task? It’s not as if we are asking them to cut off their hands…just wash them! I still don’t understand it!

  21. non-premie stranger here who has had a lot of friends and family members with preemies. glad you posted this. just wanted to say that the “just fine now” thing is not said to brush concerns under the rug but to potentially provide a positive example to help offset the incessant worry. even if even a small part of the loved preemie parent can remember that it’s not always the “worst case scenario”.. in my experience, anyway, it would be said out of loving compassion, not out of denial of real concerns.

    • Thank you for stopping by and for your comment. You’re right, I definitely think 99.9% of what is said is meant out of love and care and hope. I also know some of my words show the misplaced anger that I continue to work to overcome. I will get there. I promise. At the same time, I’ve been really surprised at the number of people who have admitted that they didn’t know that many preemies (and most micro preemies) have long term health issues and/or disabilities. Truth be told, when we were given the statistics, I had no idea that 80% of 24 week boy preemies had long term issues. The balance is tough. Walking the line between hope and accepting that our child might not be “just fine” and then there is the real fear…if he’s not “just fine” will he be accepted? I can only speak for myself, but I guess that’s my biggest fear in all of this and that’s why, even when I know no harm is intended, I still struggle to hear those words. I definitely don’t struggle with the individual saying the words and do appreciate the encouragement and love hearing great outcomes. I’m still just a little messed up with the unknowns. And that’s why I write and that’s also why I love getting comments like yours that help remind me that it’s not “us” against “them”. So thank you.

      • I absolutely understand what you’re saying, and I know when you’re talking about a loved one’s health, any kind of unknown is an understandable source of fear or anxiety!

  22. Perfectly put—thank you. My daughter Vivian (former 27 w, 5 d micropreemie) just came home a week ago after 10.5 months in the hospital (where she has spent her entire life). She came home with a trach, ventilator, & g-tube. People have been incredibly kind and supportive of us and I am intensely grateful for all of it. But it is so true that turning a certain age doesn’t “fix” things, and even coming home after all this time doesn’t magically heal things or mean she is now “okay”. We have a mountain of work and unknowns ahead of us and as sweet as homecoming is, it is also a source of much stress. Wouldn’t trade it, of course, but her being home versus being in the hospital doesn’t now make her a “normal” baby. I’m babbling now, sorry, but wanted to know I appreciate your posts. They’ve helped me feel a lot less alone over our nearly year-long journey.

  23. My 29 week, 5 day micro preemie is now 13 1/2. I am humbled OFTEN by what miracles happened in our life because of her special beginning. She is (as all children, preemie or typical, are) an incredible blessing, who, I am grateful to report, has an appreciation of her fragile start and knows what it means to be different. I disagree with a TINY point: we are kinda awesome. Moms of preemies are an elite group of gals who rock those challenges with tears, grace, and a bigger than average dose of humor. I’m just saying…if moms are SEALS, we are SEAL TEAM 6. The Only Easy Day Was Yesterday. 🙂

    • I have shared this on my page, and have read it 100 times, it is so true, especially the “I miss you too”, I am the mom to micro preemie twins (25 weeks 2 days, 13 months old now), my daughter, the weaker twin who no one thought would survive is blowing the odds away, my son who had an easy NICU stay and a “blurry” brain scan is delayed, but getting there. Many of your posts have helped in my “healing” but this was the best one yet! Than you!

  24. Amen!!! I found your blog while working on my research project for my Master’s Program. I am a preemie mom and people drive me crazy. My son was still on oxygen past his 2nd birthday. He just turned 3. He talks a little. He walks and even runs now. Just in the past few months he has made leaps and bounds, but he is still a preemie. He is still delayed. He is still on a feeding pump and I am so sick of being asked when he’ll get off it. There is no magical answer. I’m tired of him being compared to full term babies. I’m thrilled your baby or grand baby is doing all that, but my baby is NOT a full term baby. He has had far more medical intervention than you may realize. Yes, he does need to build an immune system, when his body can handle the germs. We are just now getting to take him out some to see how he handles the germs. A cold to most may mean so little, but a cold to a lung challenged baby is scary. People do not realize it hurts when they forget about you, complain about washing their hands, complain about getting their flu shots and tdap vaccine’s. They get offended that they smoke and cannot come near your child. I’m tired of hearing I don’t know how you do it. If they were in our shoes they would do it to. You do what you have to do to protect your baby and help your baby grow and develop. Wow, I could go on all night. lol Great post and I’m glad I found it. The majority of NICU families I know do not have babies who have been through as much as mine. However, I feel so beyond blessed because one of my sons roommates lived in the NICU 9 months and 21 days before he lost his battle. Preemies fight so hard and they show us how strong they are everyday.

    • Hi Terri, thank you for your note. I’m dying to know what your research is, if you can share. Thank you for sharing a piece of your journey too. I love that your son is running! I hate that more people don’t understand.

  25. Hi my names Vanessa I don’t have much to add I’m a new preemie mom my daughter Abigail , Abby for short , was born on Thursday 5/30/2013 at 23 weeks 5 days I stumbled upon your blog and I think it’s been the most amazing thing today..I’m getting used to living day to day or hr by hr at this point but it’s so hard I know preemie parents understand that I guess I wish there was words to use to explain it to a full term parent

    • Welcome to the world Abby. I am sending all the best thoughts for more ups than downs in your time in the NICU. You’re right, Vanessa, there are many of us that understand. Feel free to ask questions as they arise. We are all in this together.

  26. I am a newish preemie mom. Our Dempsey was born on 5/20/13 at 25+6. We are just over a month into our NICU experience and I’ve had a hard time vocalizing and being as poignant as you have been in this post. You have crawled into my mind! Thank you for putting words to my feelings. I think I’m still numb and figuring out the whole ” roller coaster from hell that you can’t get off and never asked to be on” thing. I’m excited to get more acquainted with your blog. Wash your hands people!!

    • Hello Laura, Thank you for introducing yourself and Dempsey to us. I’m wishing you both as smooth of a course as possible in the coming minutes, hours and days.

  27. I loved this! It is hard to hear my friends tell me that she is normal now because she is out of the NICU and appears “normal”. She has a brain injury and just because you see her one day for a few hours and she looks like a normal kid doesnt mean shes “all better”. She is very high needs and so many dont understand what happens behind closed doors. Thank you for writing this.

    • Hi Lori, thanks for sharing. It is hard to help people understand, as you say, behind closed doors…I love how you articulated that. It’s nice to “meet” you and Laura.

  28. Thank you so much for sharing your journey, as have some of your readers. I have learned so much more than I ever anticipated needing to know, about premature babies and what they may or may not face in the future. I am the great-grandmother of a precious little boy, born 2 1/2 months too soon, who was able to go home with his parents last week. This information that you and your readers have shared, hopefully, will help prepare all of us (family and friends) to better understand what the preemie families go through, after the little ones are able to go home. And by understanding, be more supportive, when they meet challenges with their child that we have not had to meet with children born full-term.

  29. Pingback: In My Defense: Why it May Seem I'm too Harsh | Ain't No Roller CoasterAin't No Roller Coaster

  30. Hi! My name is Misty and I have a 5 year old 30wk preemie boy. He is all boy in every way. Very energetic, but he is tiny for his age and he gets sick really easy. He has been officially diagnosed with asthma, but not the kind where we have to have rescue inhalers with us at all times, but when he gets sick it is really bad. He is on 2 kinds of allergy meds and a preventative inhaler and when he is really sick he is on 24 hour nebulizer steriod, a steriod by mouth, and usually an antibiotic and usually it is weeks before he is completely well. We have been hospitalized once with rsv and we are currently battling a nasty case of the flu. I’m thankful I cam across this page I would love to connect to someone that is also going through the same thing. The worry and the isolation and the exhaustion you feel is something no one can understand unless they have been through it. Thank you for listening!

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