I wish I'd known how strong my baby is - Emma's story

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Emma's son Leo was born at 28+2 weeks. She describes what she wished she had known about pregnancy, premature birth and the strength of her son.

Prematurity is not what most parents-to-be expect when they are having a baby. We thought we still had three months to prepare for our little arrival. Leo cannonballed into this world at 28+2. A tiny 1.46kg (3lbs 3oz), he was incubated and hooked up to machines, with a spaghetti junction of wires, within minutes of his birth. He looked so small and vulnerable.

I wish I'd known how much of a shock it would be to see our baby like this, in this sterile environment for that first time.

I kept wondering what I’d done wrong and how we’d ended up here. I felt like I’d failed him and that I’d failed my husband James too. I should’ve been able to protect him and yet I now had to watch by the sidelines as others kept him safe in a world he just wasn’t ready for yet. It was terrifying but soon became our normal. He spent 72 days in hospital.

I wish I'd known that a big and often unspoken part of prematurity is learning how to cope with the raw feeling of being robbed of your pregnancy.

After Leo was born, I quickly felt this overwhelming sense of grief. Overnight I’d lost my bump and I suddenly felt so empty. Pregnancy and huge baby bumps were everywhere. Seeing pregnant women filled me with this horrible feeling of jealousy and sadness. I was angry, heartbroken and confused. It was “just bad luck.” or “unfortunately just one of those things.” No one could tell us why this had happened and somehow we just had to accept that we probably never would know why.

I got discharged three days after Leo’s birth. Physically I was healing well but mentally I was broken. That first journey home was gut-wrenching. I held on to James tightly as we had to walk past so many proud families with their tiny newborns in tow. I cried the whole taxi ride home.

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I wish I'd known how mentally and physically exhausting every day would become.

Having to wait a whole week to cuddle your baby. Accepting my precious maternity leave starting months before we could bring Leo home. Coping with James having to return to work while our baby was still in intensive care. Sitting with him for eight hours straight, listening to that same monotonous bleep of machines and still feeling guilty when it’s time to leave. Having to leave the hospital with empty arms day after day.

As the days slowly passed, I began to fall into a routine, safe in my NICU bubble. Every day I’d arrive and sit quietly in my corner with Leo, counting the hours away until James would arrive after work. Babies would arrive and quickly go, breaking my heart slightly every time that we seemed stuck in this NICU Groundhog Day. When was our time going to arrive?

Looking back now, I wish I'd known to have more faith and patience in our baby.

Amongst all the uncertainty and fear, Leo was continually showing us how much he was fighting. Surviving those first critical 24 hours. Reaching 2kg. Reaching 3kg. Wearing clothes for the first time. Transitioning into a cot. Finally being strong enough to breathe without support. Making that graduation to SCBU. Celebrating all the milestones no matter how big or small, we had reached the home stretch.

I wish I'd known how unpredictable our journey would be.

We’d been in SCBU one week. One morning the nurses finally said those long awaited words to me, that we were allowed to take him home that weekend. I was over the moon and rang James straight away - there was still so much to do, we needed a car seat! Leo just needed one more MRI scan to assess his bleed on the brain, which he was booked in for on the morning of the first day of ‘rooming in’. All went well and Leo was sleeping off his sedation in our room. I was unpacking my bag and glanced over at him. He looked so strange. So still and blue. I froze. It was like it wasn’t registering that he wasn’t breathing. I picked him up and he flopped in my arms. I don’t know how long I was screaming for help, it seemed like a lifetime. The other preemie mummies held me as I watched helplessly while the doctors fought to save Leo’s life on the resuscitation table. Leo eventually cried - I literally collapsed on the floor. We made the return to NICU. It seemed he’d been in too much of a deep sleep that his body had forgotten to breathe. I dread to think if I’d simply looked over a minute later.

Day 62 will haunt me for a very long time.

Even though prematurity is a journey we would’ve never obviously chosen, it was ultimately still a blessing, as Leo survived and we were lucky enough to eventually bring him home without any complications. Leaving the hospital for that final time was such a surreal experience. The endless days were actually over. However, because we’d built such a bond with all these amazing nurses, it was quite emotional saying goodbye. They’d become such a massive part of our lives and we can’t thank them enough for all the love and constant support they showed all three of us. For the round the clock care they selflessly provided. For the cuddles they gave Leo when we weren’t there. For the cuddles they gave me when I was struggling. For making us feel involved in his daily care as much as possible. For saving our baby’s life. For helping us feel like normal parents.

Our time in hospital has changed me. It’s been an incredibly long journey, one which we’re still very much on. You focus so hard on getting out, that you don’t realise the post hospital journey is just as difficult. I’m fortunate enough to be starting therapy soon to help me start dealing with the trauma and despite how I may be feeling, I’m still amazed at how strong Leo was and continues to be today.

Our son has brought so much joy to our lives - his smile, happy babbling and his hilarious stuck bug impression, as he desperately attempts to roll over. He’s a fierce little fighter and prematurity is something that we’ll never let define him. It may not have been the start we’d have ideally hoped for and he’ll probably be playing catch up for a while too, but one thing’s for sure; I feel like the luckiest mummy in the world to have him in my life and he was worth every second of the blood, sweat and tears!

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