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surviving the premature baby journey

6 minutes

09/11/2020

Finding yourself in the neonatal intensive care unit (NICU), staring at a baby inside an incubator – when your baby wasn’t supposed to be here for another few weeks, or even months – can be like an out-of-body experience.

But every year, tens of thousands1 of preemie parents are thrown into a parenthood they never envisaged. An experience made even more challenging when combined with the uncertainty and restrictions of a global pandemic. If you’re sitting there right now, or you know someone who is, we’re sharing some wisdom and insights from those who’ve been there.

Making sense of becoming a preemie parent

If you find yourself next to a tiny baby who you weren’t expecting to meet for quite some time, you may feel like you’ve landed in an alternate universe. The fact is, the NICU is just that. And until you've experienced it, it’s hard to imagine what it’s like until you become a preemie parent yourself.

Your head will spin, you may be in shock (mum’s body almost certainly will be), and the fear is real. It will take time to come to terms with a situation that you weren’t emotionally or physically prepared for. You never dreamt you’d be caring for a premature baby, and you have every right to feel overwhelmed. The first hours, days and weeks can be all-consuming and scary, so try to focus on just the minutes and hours ahead of you instead of looking too far ahead. One mum told us: “In the first few days I asked every doctor and nurse who’d listen how long it’d be until we could take our baby home. But no-one could answer me. It took me a few days to realise that every preemie is different and I just had to take it one hour, or one day at a time.

Understanding premature baby development

So what is a premature baby? These special babies – born before 37 weeks – have simply been born too soon, before they’re ready. Much of their development hasn’t finished, which can result in a number of difficulties including breathing, feeding, and regulating their blood sugar. Their skin is especially delicate. Our article on premature babies’ skin can give you some more insight into how to care for it, and WaterWipes have been specifically-developed to be mild and gentle enough for your premature baby’s delicate skin. Some premature baby development problems are resolved before they leave NICU, some can last a lifetime. Premature babies can usually leave NICU once they can feed by mouth, breathe independently and gain weight.

Letting go of the journey you’d imagined

Julie’s twins were born at 23+6 weeks, “It was a surreal experience. I was initially a little naive about NICU, thinking that they’ll be fine and will be discharged when they reach their due date. Of course, as the days went on, I knew our journey as parents would be so, so different.”

Premature babies might need to stay in hospital for weeks or even months. Part of the NICU experience is learning to let go – your baby is fighting a brave fight with an incredible team around them, but so much is out of your control. It’s normal to grieve for the birth and beginning you thought you were going to have, Julie shared, “I learnt to accept and let go of the picture of what I thought life would be like.”

Riding the preemie parent rollercoaster

Every minute of every day in the NICU is an emotional ride you never wanted to be on. Your premature baby is unique and will follow their own development path. Comparing them to the other preemies around you is only natural, but it’s a shortcut to heartbreak.

One mum told us “Things can change in a moment – they might have had a really difficult night then by the morning things are looking positive again. You can go through every emotion in the space of a day: fear, guilt, jealousy, anger, pride, happiness. It’s exhausting, but all totally normal.”

Befriending the other NICU parents around you can be a great support. You’re going through the same thing – they get it. That sense of shared experience is vital, as it means you have someone to listen when things get tough, and celebrate when you have moments of joy.

While not being by your baby’s incubator is hard, allowing yourself to actually leave the NICU and take short breaks to clear your mind, get some fresh air or hear the voice of a friend is essential. Yes, it’s tough to see the world carrying on while yours is upside down, but the space helps you re-centre and come back re-energised – your baby needs you at full strength.

Celebrating every victory

Premature baby development is unpredictable. Every little step your baby makes is amazing progress, and a huge victory in their journey to home – it’s important to find joy in and celebrate them. The day their feeding tube is removed, the day they come off oxygen, the day they are ‘promoted’ to SCBU and you get one step closer to bringing the car seat in. Celebrate inchstones, rather than milestones.

Julie remembers, “When Jack was about 5 months, I came in one morning and called his name, he instantly smiled as he knew it was his mummy and that it was his name. It was such a special moment.”

It takes a village

If it takes a village to raise a child, imagine the support you need as a preemie parent. Not just during their NICU stay but well beyond as you rebuild and recuperate from your experience. Although well-meaning requests for updates from friends and family can feel annoying, always take up offers of help. Or better still, ask.

They will be desperate to support you through this difficult time in whatever way they can, but they won’t know what you need. Ask them to make you some home-cooked meals to heat up when you get home from a day at the hospital. If you have other children, let family take them out to have some fun at this difficult time. And if they offer to come and meet you for a coffee, take them up on it.

Recognising your resilience

Preemie parenthood is relentlessly tough. But caring for a premature baby teaches you so much, and you discover reserves of strength and resilience you never dreamt you had. This will be your parenting super-power which you’ll use endlessly on the rest of your parenting journey.

How WaterWipes is supporting preemie parents

We’re working with Bliss – a leading UK charity for premature or sick babies. To support preemie parents, WaterWipes and Bliss have launched the About Neonatal Care guide. Designed to inform and support parents during this challenging experience, the guide answers many of the questions you might have if you find yourself in the NICU. Read more about how WaterWipes is supporting and raising awareness of World Prematurity Day, and supporting preemie parents.

References

  1. https://www.tommys.org/our-organisation/why-we-exist/premature-birth-statistics

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