A Preemie is NOT A Preemie

I believe every preemie story is unique.

I believe that anytime your child is in the hospital, it is hard, lonely, frustrating, scary and sad.

I believe my letter to new preemie parents is valid regardless of the course the individual baby has.

I believe the data that proves any child born before 39 weeks is at a greater risk of short and long-term health and developmental issues.

I believe that the emotional toll for all preemie parents is significant, valid and, for many, life long.

And, whenever I see this statement; “36 weeks or 23 weeks, a preemie is a preemie” I feel like someone wearing 6 inch stilettos is kicking me in the gut.  Honestly, just typing those bolded letters bring tears to my eyes.  It makes me feel lonely and like I should discount some of the harder parts of my experience.

There are many shared experiences within a NICU stay.  The fear when you find out the baby is arriving early.  The loneliness of not having the baby in the room with you, instead you have to walk through the halls (often seeing other mothers with their healthy babies) to see your child in the NICU.  You have to ask to hold your child, there are cords and strange machines, IVs, frequent blood draws, feeding tubes.  You’re discharged from the hospital and your baby stays on.  It’s not the experience any parent can prepare themselves for and it’s devastating   There is guilt and anger and hurt and sadness.  No matter the length of the pregnancy, when your child is born sick, all of this is true.

At the same time, some preemies have additional complications that can add further layers to that hurt.

When you’ve been in the NICU a certain point of time and all the babies who were born at the same time as yours, or after yours – at the same gestation who were also really sick – have been home for weeks or months and you’re still going to the hospital every day.  You are still wondering if you will ever bring your baby home.  That is another layer of hurt.

When you have pictures like this with your child.  Pictures that were taken because you realize these may be your last moments with him.  As you walk through the NICU halls and feel the looks of pity from the staff, because you know, they don’t think he’s going to live.  When the Social Worker and Chaplain stop by, not just to say hi, but because the doctors have called to let them know there is imminent concern for your child.  That is another layer of hurt.

Owen and Tatum shortly before Owen's emergency bowel surgery, May 24, 2011

Owen and Tatum shortly before Owen’s emergency bowel surgery, May 24, 2011

When it slowly sinks in that you’re not just a preemie parent, you’re also a special needs parent.  That your child isn’t “just” not going to get “normal” at birth and infancy, he’s probably never going to get “normal”.  That is another layer of hurt.

I don’t say this as competition.  Competition, according to Merriam Webster, insinuates a rivalry.  I believe the preemie community needs to unite and support each other because there are so many ways that we hurt alike.  I would never discount the hurt that someone is feeling because they haven’t had as many complications as we have dealt with.  At the same time, I would never discount the other layers of hurt that some had that we did not.  I will not compete, but I do hope for perspective and support.  Perspective.  Not competition.

I recently had lunch with a NICU friend whose son died after 7.5 months in the NICU.  She’s been very open that it’s important to her to maintain relationships with her NICU friends because she is still not “over” the NICU experience.  She knows that other NICU and preemie moms understand part of her experience that the rest of her world does not understand.  I cannot begin to understand the layers and layers of hurt of losing a child.  It’s clear to me and to her, that some of our hurts are different.  But, because we also share many of the same hurts, we still depend on each other in our support systems.  Our journey and our perspectives are different.  Both perspectives are valid and honest and true and much too real.  Each perspective hurts, but the hurt is not all the same.

I don’t care what gestation your child was born.  If you didn’t get what you expected; that hurt.  Your hurt is valid.  I want to support those layers of hurt; each layer of hurt.  I hope you also want to support each of my layers of hurt.

Does that make sense?  I am not a proponent of competing on who has it worse.  I agree, that’s a ridiculous and very unhealthy notion.  However, I can’t discount parts of my experiences or anyone else’s experience because they didn’t happen to everyone else.  Whenever I hear, “…a preemie is a preemie” I feel like I’m expected to forget those layers.  I won’t forget and I need help getting through those layers.  I don’t want to ignore them.

Each story is valid and, in its entirety, deserves each other’s support.

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

59 thoughts on “A Preemie is NOT A Preemie

  1. Nicely written, Tatum! I cringe at the words- a preemie is a preemie. I feel like it discredits part of our 153 day NICU stay (with 9 surgeries) with our former 24 weeker. I think you said it best and better than I could. I know it’s a hot topic in the preemie community and I am glad you posted this! I will be sharing it on Facebook.

  2. Well said, Tatum! I feel like there is a lot of competition between parents. People who say oh well you had it worse or you have it easier, That does discount The whole story. Every family is different and every family deserves To tell their story in whatever way will help them heal.

  3. Oh Tatum, you look so deeply sad on that pictures that I just would like to give you a warm hug! And I agree, each layer of hurt is valid, no matter where it comes from! xo

  4. Thank you Tatum! I couldn’t agree more. Recently, I have had a couple of experiences of NICU families who don’t want to “complain” about their situation because ours was “worse”. This upsets me too, because like you said, everyone’s story is valid and there are really similar feelings and experiences. Those feelings will not be ideally dealt with if those parents are thinking “well, we should be happy about this…It could be worse..” etc. I value your posts so much, THANK YOU!

    • I agree 100%, Mandy. Also, I’m going to be joining the parent to parent team, so maybe we can see each other in that forum sometimes? I’ll touch base offline.

    • I have to agree with that. We had an 81/2 month stay with a 28 weeker who was under 2lbs. I’ve talked to people about it and they shut up fast, I don’t want that. I don’t mind hearing people talk about 2 month stays or 2 week stays. It does annoy me hearing 37-39 weekers, full size and healthy be called preemies when they’re technically term. I’m an admin on a NICU page on Facebook and one day I’d love to volunteer with parents especially the ones with long stays.

  5. I’m with you on this one. In fact, I don’t even like to use the word preemie, because I think it’s “too cute.” And we know that prematurity isn’t cute…AT ALL! I try not to get upset when someone makes a generic statement about prematurity, but my first reaction when anyone attempts to downplay what our family went through is anger and HURT. I always hated when I’d get the “well, my friend had a preemie and she’s fine now.” Those stories angered me and did not help me…because I knew that there was no guarantee for my boy to be fine! But, I’m also learning, that there is no guarantee at any gestation. I used to think that earlier automatically meant more problems (and probably does most of the time). But I’ve heard more and more stories of babies born early, but later than my son at 28 weeks, who have had more complications than Jack did. And I’ve heard the flip side as well, that some born earlier had a less complicated stay and affects. Like you said, each story is unique and offers a different perspective. No need for competition or comparison.

    • Heather, I’ve never thought of “preemie” being cute. I’ve always just thought of it as a lot shorter than prematurity – but now that I hear it, I really understand your point. I can’t promise that laziness will not win out at times, but point well made. Also, I agree with you on gestation not always being an indicator of outcome. I learned that lesson our first week in the NICU – tiny Owen was next to a beautiful full term baby … she went home on hospice and lived only a few weeks. It was definitely a wake up call for me.

      • Tatum – I think my problem with the word “preemie” is just that many outside of this experience hear it and just think, “Oh, born small and needs to gain weight.” It’s what I thought “preemie” meant before I had Jack, mostly because my only experience was how media and TV portrayed the experience (and that I had a Cabbage Patch Kid Preemie doll that was just smaller than the other ones). I obviously learned very quickly about many other concerns, besides weight, that premature babies may confront. Don’t let me stop you from using the word…save yourself some time and finger cramping and keep using “preemie” 🙂

  6. This is so true. I had a 26 week preemie baby girl in Dubai we don’t have any support groups or social workers that are around in the US so i tried connecting with some of the parent within the NICU. Sadly most of the parents around loved comparing once such instance was when my DD had to be reintubated instead of consoling that my DD had to be vented they would ask her why she cant learn to stay off the vent.

  7. I definitely agree with this, there was a “A preemie is a preemie” post that went around a day or so ago that didn’t sit quite right with me. While yes there are some similarities, I think being able to acknowledge other’s journeys that are different than yours can be supportive not always comparative. Being a NICU parent creates empathy and a connection, gives perspective on where the others are in their journey. A feeder and grower is much different than a child with complications that have lifelong effects and that needs to be acknowledged and not in a pity or guilt sort of way, but in a supportive way. As always, love love love your posts!

  8. My baby was in a large NICU. The NICU staff offered classes for the parents. I remember my first class. I could barely pull it together to attend. The other moms sitting at the table were chatting as if they were friends meeting for coffee. They were talking about plans for going home soon and nursery decor. The instructor came in and started class. She requested that we go around the table and state our babies birth gestational age. The mom that spoke before me said, “I have the youngest baby here. 32 weeks! Can you believe that!” Then it was my turn. The table turned towards me. I mumbled out, “26 weeks” The moms at the table gasped. Then I was flooded with questions… “How big is your baby?” “How early can babies survive?” “How do they put in IVs?”

    I knew after that day a preemie was NOT a preemie. Bravo to you for being audacious enough to address it. I’m not trying to compete… Trust me, it is not a thunder I want to steal. It is one competition I would gladly lose. I’m just trying to make sure that my pain, fears, and challenges are addressed adequately. My baby’s medical professionals recognize that having and treating a micropreemie and a preemie are two very different experiences. I am not sure why it is so hard for others to recognize it.

    • You said this so well, R! Our medical professionals also recognized the difference between the two. I am glad you brought that up!

  9. Very well said. I also think support systems are great, but some things moms just work out alone and it’s lonely, but each child and their journey is so unique there can be no comparison.

    Thanks for continuing to share your journey. (And for the high calorie cheat sheet!)

  10. Thank you Tatum. I’ve been following your blog and I feel so relieved I’m not the only one out there…thank you for your honest truth.

  11. This is a really good post, and I struggled with this issue for a long time. People would approach me and say “I know what you are going through because my son was in the NICU for 4 days and it was terrible.” I would be so offended by that type of remark because that is really nothing like the NICU experience that I had, not to mention what we have been through post-NICU. However, the longer I have been removed from that very traumatic experience, the better the wound heals, and the easier it is for me to see other people’s pain. My son recently spent 2 weeks sedated and paralyzed while on a ventilator after a surgery to repair his airway. When we came home from the hospital, I found out that one of my best friends had been going through something during those 2 weeks and she was afraid to call me because she thought her problems were not as important as what I was going through. I realized that every single person I know is probably struggling with something at any given time. Not everyone has a preemie, but everyone experiences their own hardships and I need to be more empathetic and stop comparing their struggles to mine.

    • Such a great point, Kristi. Preemie families aren’t the only people in the world with issues…significant issues. It’s not a competition across issues either.

  12. Thank you for such a well-written statement about prematurity. My twin girls were born in 2007 at 27 weeks gestation. One girl was premature but otherwise “fine” (as fine as a 27-weeker can be) – she was an appropriate size for her gestational age, 2 lbs. 3 ozs. and really only had a few bumps in the NICU. She quickly became a feeder and grower. Her sister, on the other hand, had severe intrauterine growth restriction and was born very sick and tiny, 1 lb. 4 ozs. Her course was more similar to that of a 23-24 weeker. Like a lot of multiples moms and dads, my husband and I would literally stand at one isolette and cheer for weight gain and milestones, then we would turn to the other isolette filled with grief and worry for our tiny baby. I think the hardest weeks were those when one baby was home with us and thriving and another was struggling in the NICU. I remember crying when I had to leave the NICU but crying when I had to leave my baby at home to go to the NICU. BTW, my girls are in kindergarten now and BOTH are thriving and healthy. Not a day goes by that I do not know how blessed we are.

  13. Maybe I’ll be alone here but it does sound like a numbers game…a preemie is a preemie. I haven’t read the original blog entry going around, I guess, so those are my own words. I watched a nearly term baby nearly die before my eyes. I don’t know what happened. Each premature child is unique. I don’t like the feeling I get when micropreemie moms hear I made it to 30 WHOLE WEEKS! My experience was unique and full of challenges, too.

    I really enjoy your posts and appreciate your blog. I do a lot of writing within the premature community as well so I’ve heard a lot of stories and am in several support groups. I can’t imagine what someone else’s experiences are like – I can only listen.

    • I can’t edit what I wrote so I’ll say that I have re-read it and see it differently. I get what you’re saying. I think I see a lot of “preemie-er” responses that brings me back to the “how many weeks and days was your preemie” feeling…like it discounts my journey. I had my child early because my entire home burned down with my pets trapped inside. That is a layer of hurt that goes deeper than I can explain. So thank you for your -perspective- rather than competition. I really hope the preemier stuff stops, though. NICU sucks.

  14. Your right, no journey is the same. Whether it be prematurity, loss, infertility, special needs, or divorce.

    Everyone has a story that defines them. I saw a quote today that said “things we take for granted, someone else is praying for.” I think this is important to realize no matter where you fall on the spectrum.

    With that said there is a reason why prematurity, like cancer is defined on a clinical scale. Stage 1 cancer is vastly different from stage 4 much like a 24 weeker is different than a 34 weeker. There are always outliers, which is why it is so important to not judge a book by its cover (or gestation)

    • hit go too soon…
      Your plea for us to understand and respect your layers of emotions is such a great way for us as a community to support each other. Everyone in this prematurity community starts in the same place – a birth that is vastly different from what they dreamed of. From there it is just common threads that bind us.

    • I’m glad you brought up the external factors to the NICU journey too. Those that lose their jobs or have relationship battles, or, like one mom on here, her husband is sick and her babies are sick. A hard journey is not just defined by outcomes of the baby.

  15. could not have said it any better, layer upon layer and layers upon layers. that is a good way to think about it.. and YES every story and each and every baby unique.. in the way 2 babies have the same thing…one may thrive on the love and touch and affection, prayers and so forth of lots of family, yet a single mother has no one..can they both be bathed in love and compassion and positive energy… I believe so. While I was so fortunate to have my husband support me staying day in and day out with our miracle, we had a 2 year old and he held down the fort at home… when my eldest sons appendix ruptured when our miracle who was not going to make the delivery.. did …I saw some spouses NOT support or take it in stride that a union and a team approach of one another was vital to “get through” with out ANY OTHER trials and tribulations. THE NICU was by far probably the most darkest hours of any parents lives.. and the thought of that journey tearing apart a family, couple, marriage breaks my heart. so there are YOU ARE RIGHT so many layers and layers.. and while one person had a “short stay” compared to someone in “competition” shame on them because that mom may have been ALL ALONE. Thank you for sharing, and I agree, I could go on and on here.. but just wanted to agree, smile and as I read was getting chills and being ever so grateful for the miracle I do not know how I deserved … but I am honored to have walked the halls and sat in the most uncomfortable chairs, being asked to “let him go” off life support.. ut chosing NOT TO do so…and finally after 2 1/2 long months took him home on a monitor..my miracle will be 3 March 6th…I pray one day NO baby or mother, father, family will have to endure such a thing…one day…

  16. I sit and cry as I read this. There are so many layers of hurt. As I sit here tonight with my 25weeker, now 3, in the hospital (as he often is), I add layers of hurt. I hurt that I don’t have a 3 year old that can play in a preschool classroom with other 3 year olds, but instead, he is here telling me “no hurt mommy” as he holds his arms each time someone enters his hospital room. I hurt for him, I hurt for his past and each pain I have watched him feel. I hurt for his future, a future I can’t predict. However, I am blessed. I am blessed by the wonderful little boy he is. I’m blessed by this community of parents. I am blessed by the many life lessons this beautiful little boy had taught me. Thank you for your words tatum. Thank you for acknowledging the hurt but also reminding us to tread lightly. We all have different hurts and different ways of dealing with them. We are here to support each other through it.

    • I’m sorry to hear your son is in the hospital, again, Kathleen. Hugs and prayers coming your way. Please keep me updated. I hurt for him and you too. This stuff is hard. Excruciating.

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  18. I totally agree with this and I think you’ve summed it up brilliantly. My little one was a 25 weeker and we had three months of intensive care and five hospital transfers., The vast majority of her growing was through a cannula. It’s as you say, some elements can be compared and then there’s a whole lot of extra.

  19. I am the proud mother of a 28weeker who was born weighing 1lb 11.5ozs, had 5 holes in her heart, 2 large and 3 small muscular VSDs, developed severe bpd due to the heart sending the oxygen to the wrong parts of her body. She will be 2 on the 20th of next month and after having 2 heart Caths, feeding tube surgery and laser eye surgery for ROP she came home about 1 year and 2 months ago. March 20-December 1, 2010 was her NICU stay and it was the best Christmas gift we could ask for. I’ll talk to other NICU/preemie moms and half the time they just shut up or they say things like “I could never do a stay that long…” Or “you’re so brave/strong…” I met another woman who had as long a stay and one couple who’s son celebrated his 2nd birthday there but other than that, I really haven’t met anyone with as long a stay as we had but it wouldn’t have been as long if the first hospital didn’t ignore the problems to earn money from our insurance. She spent over a year on oxygen but now she’s healthy, strong and learning how to walk. She can already crawl faster than we can go after us and she’s a true blessing. I’m almost 22 weeks with her (going to be angel) sister now, who has been diagnosed with anencephaly so we are bracing ourselves to lose a baby too. I’d happily redo the long stay, oxygen and surgeries to have a future healthy baby like my older one.
    I agree with the concept it just annoys me hearing 37-39 weeks called preemie, when its technically full term.

    • I will admit I do envy people with your length stay, I couldn’t even hold her by 10 days, all I was allowed to do was touch her stomach.

      • Thanks for the thoughts, Beth. Yes, my perspective definitely changed about that 10 days after having my second child who spent 6 months in the NICU and a total of 7.5 of his first year in the hospital. However, when I had that ten days that was the worst that I knew. He was in a small special care unit and they only allowed us in the room every 3 hours for a 30 minute attempt to feed, so I didn’t get to know any other parents. My 2nd NICU experience made me think 10 days wasn’t so bad, but that didn’t take away the hurt I had already felt.

        I also agree that it’s really important to have those of us who understand the extended NICU stays. The NICU for my 2nd son was very large and there were 4-5 of us that I got to know that had 6-9 month stays. On the most part, they are the moms I remain closest to, as I feel like they best understand that total experience. I wish you would have had a group like ours, it helped immensely with coping to see other moms that had been there as long. I’m happy to hear your daughter’s doing so well now.

        Most importantly, I am sorry to hear that your second child will be an angel. As you say, a NICU experience is so worth it if your baby can come home. I’m sorry that it won’t be an option for you this time around.

        • There is still a chance the anencephaly diagnosis could be wrong but its a low chance. We hopefully find out this week.
          What killed me was that we sent our daughter to a different hospital for a noninvasive surgery (laser eye surgery) and she came back just one week later testing positive for MRSA… Not the infection and I was told because it was colonized it made itself practically her body’s natural bacteria and could give her a stronger immunity to the infection but could potentially be contagious, although I’ve touched her nose many times with open cuts and never got it. I think they did get the MRSA out of her system but really, you send a child to a hospital for a simple procedure and they come back with something like MRSA… We swore off ever going there again.

  20. Thank you for this, my daughter was not as premature as some (35 weeks) but she was born with Gastroschisis, a congenital defect that resulted in a long NICU experience, and many recurrent hospitalizations through the first year. I met some amazing NICU mommies in my time there, one of the most supportive was the mom of two 28 weeker twins and while she marvelled at my strength dealing with the surgeries, all I could think is I don’t know how she handled TWO sick babies and an extended NICU stay. We all walk different paths, and I loved how this article addressed having the ability to sympathize without competing, recognizing the strength require to “survive” each unique situation.

  21. Thanks for articulating something that is ambiguous, along with so much of the experience each of us has which is completely unique. It is not a competition but there are, for sure, grades. I could spit now, 11 years on, when someone has a 38 weeker and extols the ease of their “premature” journey. And yet I know in my heart for any parent to be separated from their baby, even for one long night is a complete nightmare.
    Thanks for wonderful post. Please can I seek permission to reproduce on prematurejourneys.com site with a link to your blog. Your words will help I am sure! thanks

    • I have mixed feelings about all of this. I really feel like even though people say its not a competition…somehow it always seems to get back to that. My little boy was born at 32+6. He was a BIG boy at almost 6 lbs. But while we were in the nicu I never felt like we were “sick” enough. Even when we were right there in the critical area he wasn’t small enough.

      I’m angry and crying just writing this…nobody took my baby seriously and now he’s severely behind compared to most nicu grads (even micro preemies). He has PVL (how I found this blog). He is 2 now and is nonverbal, can’t crawl, can’t self feed, can’t play pattacake, he’s was blind with cvi but thank god has made some improvements there. Why isn’t my baby’s history significant?
      I’m angry because I heard from two different nicu professionals that my baby was sent home earlier than he should have been (this was after his discharge that I found this out). They never ultrasounded his head and we just had to sit around and wonder why he wasn’t developing. Wonder why he screamed nonstop for 4 months. Wonder why he wouldn’t smile, wouldn’t look at toys etc.
      I hate that people think that just because he had a shorter nicu stay that everything is simple.
      Thanks for the blog. I wish I knew how to stay positive about it all. I still have so much anger and sadness. I often feel that ppl don’t understand.
      On a positive note, I love my little boy and would not trade him for anything! Despite all of his problems he is the happiest boy and has the best laugh! No matter how hard things are he makes me smile.

      • Thank you for sharing, Shannon. I’m am truly sorry if anything I said makes you feel like you shouldn’t get the same support because you had a 32 and not 23 weeker or that you had a shorter stay in the NICU than some. My intention was to use my examples of things that we experienced that not everyone did as evidence that each story is unique. I do understand, in hindsight, that it may looked like I was saying, if your story wasn’t like this, it’s not significant. I am sorry. I tried really hard to chose my words in a way that said every story is significant and unique, therefore a preemie is not a preemie and I hate that I didn’t get that right for everyone, including you. I do think his (and your story) is significant and would be happy to share it or read it privately if you don’t want it shared widely.

        It’s not exactly the same, but I think I understand what you’re saying. I one time had a special needs mother say to me, “is he just a preemie?” – as in, he’s not like my SN son because he’s going to outgrow his issues. And what I wanted to say was, “no, he’s a child with PVL and chronic lung disease that was caused by prematurity”. There is more to the story – similar to your son who some may say, “he’s just a 32 weeker.” I can’t apologize enough, if I made you feel like that and I thank you for having the courage to let me know.

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