Dear NICU Mum…


 

My baby boy at 6days old or 27weeks and 4days corrected.

My baby boy at 6days old or 27weeks and 4days corrected.

 

I’m a member of a few special clubs. I have battled infertility and I am the mummy of four angel-babies and one living Miracle. My beautiful son was born at 26weeks and 5days, weighing 860grams. Despite all the odds he survived. This is a letter to myself and to all the others who have walked the steps of the Mother of a baby in NICU…

 

 


 

Dear me,

Today it feels like this will never be over. It feels like every day for the rest of your life you will be spent in this room. I just want to tell you that, sooner than you think, the moment will come where you find yourself putting that baby in a car seat. You’ll sit in the car park in disbelief that this is it, it’s over and you can just go home.

One day there will be no more alarms and monitors. No more DSATs and blood gasses. No more billilights and humidicribs. No more expressing breastmilk and tube feedings. No more sanitiser and incessant hand washing. No more bright lights and nurses. One day it will just be you and your baby, alone, in a silent room, at home, where you belong.

One day there will be no more ‘last phone call of the day’. There will be no more carparks and crappy cafeteria lunches. No more sideways nappy changes and bi-daily weigh-ins. One day this will all feel like it happened a thousand years ago… To someone else.

I want you to take a photo every day. Take the time to take photos of every single milestone because this isn’t just your story… This is the story of a miracle. This is the story of a baby who was born to change the world just like they have changed yours. One day you will wish you could explain to this child just how incredible, how extraordinary, how captivating their story really is. One day you will wish they understood just how precious they really are. You will wish they understood just what it took for them to be here. So, write their story. Write a note every day and one day, when you have a moment of peace, you will make the scrapbook of a story worth telling.

I know that you look around at the other mums and you feel shy, exhausted and like there is never a good time to chat. I wish you knew that a year from now those women will be some of your closest friends. They will be the only ones who ‘get it’. They will be the only ones who you feel like you can compare notes with. So, take a minute to smile at them. Take a minute to look out for one another. Take a minute to leave a note with your name and number as you brush past each of them and go from one ward room to the next, because these women will be in your life forever. Their faces will be etched in your memory for the rest of your life, because this journey is something you need to share. This load is too great to carry alone and no one will ever understand it the way they do.

I know that right now expressing breastmilk is something that tears you in two. Sometimes you feel like it’s the only thing you are doing to help and other times you don’t know why you bother. I want you to know that in a few months from now, in the dead silence of night you will sit in a room alone with this creature and in the dull glow of a night light, he will lean his head back, look up at you and smile as if to say “Thanks Mum”. In that one solitary moment, every minute spent listening to the dreadful squishing of that pump, every sore nipple and mastitis ache, every millilitre you made, will have been worth it.

I know there are moments where you feel like you just don’t want to go to that place today. There are even times where you feel like you don’t want to go ever again. I know you feel like that baby isn’t really yours anyway. It’s ok. What you have to do goes against every instinct, it’s unnatural. But it is the only way. One day you will feel it. One day you will finally know how it’s supposed to feel. You will know what all those other ‘lucky’ mothers talk about. It will take you longer than them, but it will happen and it will be worth it.

I want you to know that you’re stronger than you think. Even when despair comes at you like a tidal wave, it will ebb away again and you will still be there, standing strong.

I know there will be moments on this journey when you can’t bear to watch. Where you can’t stand to see the pain and the things they have to do. I won’t tell you it’s ok, because it’s not. There are so many things about this that are unfair… This one is the biggest. But you need to remember that this is the only way. Without this pain, this blood test, this needle, this tube, this ultrasound, this eye test, there won’t be anything to come after. These are all the things that will make joy possible.
Please remember that you aren’t a bad mum for having to wait outside, or for being upset by it. You feel like this because you are a good Mum. You feel like this because you are fighting the instinct that tells you to grab that baby and run. And one day you will take your baby to be immunised because you know what it’s like to watch one really suffer, in real pain, and you will know that this needle is worth it. The Doctor will look at you puzzled as you sit serenely holding this baby and the dummy with sugar syrup on it (because some tricks you won’t ever forget). In that moment you will be thankful that this tiny needle is one more thing that will keep you from ever going back to that place again. You will thank the part inside of you that knows that this is nothing to be scared of because this is one of those things that will keep your baby safe.

I know sometimes you find yourself in tears for no real reason. Don’t be afraid to cry. Even if you don’t have the time to notice, even if you try hard to avoid it, your grief is there and it is real. It’s ok to be heartbroken. This isn’t how it was supposed to be. You feel ripped off because you were. You miss the tummy kicks because they aren’t supposed to be over yet. It was supposed to be joyful and happy not terrifying and devastating. Even when they say it could be worse that doesn’t negate how bad it actually is. It’s ok to grieve the loss of what you don’t get to have. You won’t ever get it back and you won’t ever be able to change it. So, stop. Miss. Cry. Because this is your reality now and it’s ok to feel sad. It’s ok to be angry. Embrace it. Because right now it feels like it could swallow you alive, but it won’t. It will make you a stronger, different, but better version of you. This experience will change the person you are. It will make you forever grateful and eternally optimistic and one day you will understand that these are qualities that you were lucky enough to have earned the hard way. These are virtues that will change the way you see the world. These are attributes that will make you less selfish, more patient and most importantly, you will become generous and understanding in nature because for you, life has become precious.

One day you will look back on this and you will know that your baby isn’t like the other kids. Your baby is tough, resilient, a fighter. Your baby survived the unthinkable, the unfathomable. Your baby is a superhero. I want you to remember; you too are strong, powerful. You are a force to be reckoned with. You are a survivor. But right now you aren’t even living, right now you are battling, you are surviving each day and they are blending into one big blur. But surviving this and making it to the end will make you into a hero in your own right, in your own way.

I want you to know all of this because one day down the road from here, you will be at the supermarket, making small talk, chatting about the sweet little thing, sitting with a smile, in your trolley. When they ask ‘how old’ and you answer and for the very first time the conversation doesn’t lead to talk of Prematurity, birth weights, gestational ages and NICUs, you will find yourself standing there with a silent grin. You will be smiling because you know a secret and those around you have no idea. You will know that you are in the presence of a wonder of modern science and medicine. You will know that you are in the presence of a superhero. You will know that this isn’t just any child; this is a living miracle.

So breathe. Feel. Embrace and know that these ‘worst days’ of your life will make every single one of the ‘good days’ greater.

Love,

You.

Written by Bess O’Connor (nee. Gairns)
Doting mother to Ned.
Loving Wife to Andrew.


Please support the National Premmie Foundation, Australia’s Official host of World Prematurity Day, the 17th November.
Visit prembaby.org.au to donate or https://www.facebook.com/nationalpremmiefoundation to tell your story and promote awareness, celebrate and commemorate babies #BornTooSoon #BornTooSmall & #BornTooSick.

Eddison's World Prematurity Day Poster for 2014. Thank you to the National Premmie Foundation.

Eddison’s World Prematurity Day Poster for 2014. Thank you to the National Premmie Foundation.

 


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