No, my baby isn’t normal

No, my baby isn't normal (2)

It started off as a minor irritant. A prickle, easily brushed aside. But after what felt like the 200th time someone blithely compared my micropremmie to a ‘normal’ baby, that word felt like a festering sore which was never allowed to heal.

Ok, in the scheme of things, it wasn’t the worst thing you could have said to me. That award goes to you who offered condolences for the loss of my son, even while he valiantly fought on in the next room. But I digress.

Normal.

Why does that word raise my hackles so much? Perhaps it’s because once Etienne was born, we always seemed to be in its endless pursuit.

To the young lady at the stationery store, I’m sure you meant well, but your encouraging comment when my son was already a few months old that he was ‘starting to look like a normal baby’ wasn’t the most sensitive thing to say to someone rampant with post-natal hormones, off-the-chart cortisol levels and an emerging case of the baby blues. But of course, being the consummate polite English girl that I am, I merely smiled and nodded, while inwardly crying for my beautiful, almost-normal boy.

My almost-normal boy

My almost-normal boy

It wasn’t just the inexperience of strangers though. Medics, family members, and well-meaning friends would all use the dreaded ‘n’ word. I assumed people would grow out of it, just as my son grew into his skin, but at age six months adjusted, he’s still being defined in terms of his inclusion or exclusion from that elusive group of babies. And it snaps at my heels. A lot.

But here’s the thing. It’s not you, it’s me.

When you give birth to an extremely premature baby, nothing is normal. From the moment you lie on the surgical table, eyes locked on the sterile curtain that will reveal your son’s fate, to the day you finally leave the hospital with your tiny, fragile baby, still reliant on oxygen cannisters, and already four and a half months old. So we keep hoping for, pursuing that nirvana, normal. Running away from abnormal.

Like so many other micropremmie parents before me, I fell into the trap of thinking that once my son was home, finally, life would be normal. But it’s not. The eternal scramble to make sure Etienne takes every last ml of milk because we’re terrified of losing a single percentile is not normal. Nor is the unrelenting war against germs, meaning we need to avoid crowded places and quarantine him from other children. No mothers groups, no day care, no playing on the swings in the park. The mounting fear when your baby shows the slightest sign of illness. No flights for a few years because of chronic lung disease, so no proud reunion with my family overseas. No baby shower, no first birthday party because it’s bang in the middle of flu season, and no easy answer when a stranger asks how old your child is. It defies every preconception I had of what would constitute normal.

And yet. If this is the very small price for taking our very significant prize home, I’ll gladly pay it again and again, whilst stoutly defending our claim to be the luckiest and happiest little family in the world.

Two-thirds of my happy little family

Two-thirds of my happy little family

But please, do me a favour, next time you want to talk about how ‘normal’ my son is or isn’t, ask yourself, does normal even really exist – or are we all just different shades of the usual?

In any case, when I think of the litany of hurdles; the swathe of night-time horrors my baby had to overcome to be here today; compared to your average milk-drunk, rosy-cheeked full-term chubby bubby, I must admit Etienne is indeed not normal. When you’re a micropremmie, normal just isn’t enough.

Nope. He’s super-normal.

Watch Etienne’s story here:

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35 thoughts on “No, my baby isn’t normal

  1. No mothers groups,

    OK, I don’t know where you’re located and so whether there are any ex-prem groups near you – but if there are then I would definitely try them out. It’s other mums who are also germ-phobic, it’s a chance to get out of the house, it’s other mums who’ve been through NICU and have shared experiences.

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    • Hi lsn

      When summer comes we will definitely be joining an ex-Premmie group! Because of Etienne’s chronic lung disease we’ve been warned away from exposing him to other children over winter by his respiratory consultant and paed.

      Thanks for your suggestion and for stopping by!

      Carmen

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      • Most ex-prem groups have an illness policy, which is basically don’t bring your child if they’ve been unwell at all. Best wishes for the winter, and just for the record – my son got his first three colds from the hospital when we went in to get the RSV immunogloblin injections. Bloody hospitals, full of sick people.

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  2. Hi Carmen, your story really hit me hard. Sitting here with tears because you are a woman after my own heart ;-( My son was born at 25 weeks plus 1 day with a birth weight of 520grams. He spent 6 months in the NICU and is now 19 months ‘corrected’. He also has/had Chronic Lung and came out of the NICU on low flow oxygen which he stayed on for the first 13 months of his life. Despite these obstacles he has done incredibly well with no long term physical side affects to speak of. His lungs will always be a worry and flu season is very nerve wracking (especially the first year out) but it gets easier year two as they get bigger and stronger. We are still VERY VERY careful with him but his energy and fierce little personality prevents us from keeping him as restricted. Anyway, without going on too much I just wanted to say thank you. So nice to know that someone out there knows how I feel. TKG

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    • TKG thank you so much for sharing your story. So wonderful to hear that your son is doing well (and so remarkably similar to Etienne’s story too). You must be so proud. x

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  3. What an amazing story! My son was born at 30 weeks and although every story is different some of the things resonated with me. The thought of the first bath and clothes which others take for granted I completely understand how exciting it was for these things. What strong little men we have, my little man was born at the women’s and then transported to werribee Scn. All the best for the rest of your little mans story

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    • Hi Tara I think whether your baby is 17 or a few weeks prem we all have our shared experiences. Leaving the hospital for the first time without my baby was just so heartbreaking, and something you’d absolutely understand. I hope your little man is thriving now!

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  4. I haven’t had a micro-premmie or even a premmie so I could never truly understand what it is like or what you go through but I would like to say congratulations on your beautiful bundle of joy, and may your wonderful little family stay happy and healthy through the colder months.

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  5. I’m just about to finish my midwifery studies, and …. wellllllll ….you guys are amazing! what an amazing story to share with the world. The love you’ve already showed little Etienne is just beautiful. Keep doing what you’re doing guys. All the best! x

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    • Thank you so much for your gorgeous words Matilda! And what an amazing profession you have chosen. May you help deliver lots of prems safely into their mother’s arms…just not too many 🙂 x

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  6. Hi Carmen, thank you for your honesty and articulate manner of describing what it is like for microprem mummas and their babies. My little Millie was born last September @ 795g but she was very blessed and only needed 2 transfusions during her 73 days in NICU. She is 7 months now and 4.6kg 🙂 I watched your video, it was beautiful! I have one for my miracle baby too. We have a FB page “Every Step Of The Way With Millie”. Do you have one? I would love to look at it and give it a like! 🙂 xox

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    • Hi Rebecca thanks for your lovely words. What a gorgeous girl you have! Your FB page is such a wonderful dedication to her. I don’t have a FB page (only started the blog a few days ago!) but would love you to check out Milky Mums, which is a community organisation I helped establish to support women breastfeeding in NICUs. https://www.facebook.com/milkymumsaus Oh, and I’m a big fan of music therapy for babies too! I sang CONSTANTLY (and still do) to Etienne while he was in hospital. Unfortunately for anyone nearby, pretty much the same 3 songs over and over again…
      Carmen x

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  7. Your little one is gorgeous normal or not you will love him with all your heart and thats what a good mom does Bless you both xxxx

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  8. Hi Carmen, i feel like you took the words from my mouth! Thank you for putting in writing something i haven’t been able to. My daughter was born at 25 weeks, spending 5 months in nicu and coming home on oxygen. She is now 4 and in and out of hospital with colds, she also has a windpipe issue requiring it to be reconstructed meaning she struggles with breathing, there are about 12 cases in the world so a very scary stressful situation to be in. Fortunately she can do pretty much anything the average child can however I’m sick of and it breaks my heart when people look at her and say how lucky she is to be doing so well, it invalidates the stress and heartache of the millions of appointments we continue to have, the fact she has to stop playing because she’s out of breath, having to have an oxygen tube when she’s already feeling crap with a cold and having a 4 year old that knows more medical terms than the average adult!! Bringing your child home from nicu is such an exciting time but people forget that its not necessarily the end of our premie journey so when I’m walking through the supermarket and a stranger asks if my daughter is ok because you can hear her breathing 5 isles away don’t tell me how lucky she is because she survived being a premie baby, we still have the highs and lows that were experienced in the nicu, just because she made it home its not over.

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    • Hi Rebecca Thank you so much for sharing your story. You have been on (and still are on) an amazing and unique journey with your daughter – one that most parents will never experience. You and your daughter will have gained so much strength from each other but it doesn’t take away from the fact that sometimes its just bloody hard, and you should be allowed to say that. I truly hope that the universe sends you a few more gifts to you both – you deserve it. Carmen x

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  9. The picture of r baby reminds me of how my grandson looked and of the agonising times that he battled to survive. We who have this experience bear the emotional scars but also the greatest trophy, every time we look at our beautiful tough little super babes.x

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  10. This was absolutely beautiful. My son was born at 25 weeks 1 day this past January. We are still in the NICU but praying to be home come May. I feel like I have experienced so many of the feelings you talked about. Especially with people telling me my son is starting to look like a real baby now. Um, pretty sure he has always been a baby. And a strong one at that! Thanks for sharing.

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  11. I have micro premie twins. What you written above is exactly my experience. My twin are 4 1/2 years now and we’ve stopped correcting their age and they are pretty much ‘normal’ now but it took a long time to shake off the premie badge

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    • What an incredible journey you must have had with micropremmie twins Alison. I hope you’ve switched the ‘premmie badge’ to ones that just say ‘amazing kids here’? 🙂 Thanks for reading, Carmen

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  12. I also constantly sang to my little boy in the NICU. Mainly songs from the Sound of Music (as they’re all I could remember the words to). Now I sing ‘little white bull’ because he’s my little bull, a pretty little bull & a brave little bull but just ain’t black (normal).
    he was 500g born at 25 wks and we spent 7 months in hospital. He was on O2 at home until 13 months. At the age of 2 he’s just started rolling all the way over and doesn’t sit unaided but considering we were told if he survived he wouldn’t ever smile or acknowledge us, he’s an absolute joy, and so happy.
    I also hate answering the how old is he question.
    Good luck x
    siobhan

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    • Congratulations on the amazing progress of your little miracle Siobhan. You must be so proud. And what a sweet song with so much intrinsic meaning to sing to him. I’m a big fan of music therapy – during those periods when Etienne was too sick to hold (sometimes weeks at a time) singing was the only nurturing or positive contact I was able to have with him, so it was so important to me. I still sing, which means that even if I’m in the other room I only have to bellow a song through the wall for him to calm down 🙂 I hope your little one continues to defy expectations, with a happy little smile on his face! Carmen

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  13. I love this!! It brought tears to my eyes. My baby was born weighing 500 grams and her first year of life has been anything but normal. I can definitely relate! Thank you for sharing!

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    • Thanks so much for your kind words Preemie Mama. What an amazing journey you must have been on with your tiny daughter. One that may not be normal, but which will have made you all stronger, more hopeful, more thankful, more present and yes, ‘super-normal’. I hope the future holds great things for you both! Carmen

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  14. Its an amazing journey. I am the proud mom of a feisty tenacious 3 year old that some days really sets the bar as far as challenges go. And then I remember how uncertain thing were when she arrived at 24 weeks and 2 days weighing in at 589g. And how that same determination got us to where we are today. And I think if I had a flash forward then to life now I would have said bring it on we can handle anything. The truth is you never forget but we are very fortunate – our daughter is now very healthy and strong, fearless and amazing and her prematurity now helps to remain grounded as we deal with very ‘normal’ challenges associated with a very determined toddler.

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    • Wow Moira you have articulated everything I feel now and hope I am still saying in a few years too. I think its more than luck that you and your daughter ‘found’ each other!

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  15. My premie twins were monsters compared to Etienne – 1.2kg and 1.3kg at 32 weeks. Leaving them in NICU for 4 weeks was horrid bringing them home when I should have been 36 weeks pregnant was amazing and terrifying. You are going to have am amazing journey with your beautiful little man. I did with my girls who are about to turn 16.

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    • Thank you Shauna. It has been an amazing journey, although thankfully today its mostly about the ‘normal’ wonders of new parenthood. Great to hear about your twins too – my twin sister and I were ex32 weekers weighing the same as yours, and there’s not a sign of it today 🙂

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