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Josie's story

14 October 2016

When your baby is handed to you, fresh from the womb, it’s a momentous occasion.

But some don’t get a fairy tale start. Their babies are born then whipped away. Hours tick by before you can see your child and feel that tsunami of emotions rise from the pit of dread in your stomach.

Parents of NICU (neonatal intensive care unit) babies don’t have whimsical milestones like that first snuggly picture straight after birth. We have NICU! The doctors, nurses and specialist consultants are all amazing, but it’s nowhere near 'normal'.

When our eldest was born, a room full of activity soon became an empty shell of just me and my husband. No baby, no cuddles, no first kisses. It was a bizarre journey into the unknown as our 29-weeker was whisked away, intubated and hooked up to every machine possible.

Josie's eldest in hospital

It was 4am. Exhausted and desperate for any news, my husband and I just wanted our boy. Fitful sleep came as we clung to each other, with no tears left but many questions unanswered.

Finally, five hours after our boy was born, a knock at the door. "You can go and see him."

We hurried anxiously across the corridor. In the intensive care room, the quiet buzz of nurses gracefully tending to alarms, beeps and buzzes. Five incubators with machines on either side – a normal day for the nurses, but so alien to us.

We’d never thought we'd start our lives as parents in a room like this. Inside one incubator lay our tiny baby cradled in a comforting snug, attached to a multitude of wires and tubes. So fragile, skin and bone, coated in downy hair and being helped to breathe.

"He’s doing well, he’s a good size."

Doing well??? He was intubated, with wires coming out of his umbilical stump! To us he was tiny – 2lb 15oz.

"The next 48 hours are the most crucial."

Oh God!

Every moment waiting, watching, over-analysing. We soon became fluent in NICU as we looked over his notes at every visit. What were his oxygen levels? How often had he desaturated? I remember telling myself to stop seeing my child as a set of test results but to say hello first.

At first, we couldn’t hold a hand or stroke his face as it might cause him pain. It was heart-breaking, but we could gently place our hands upon him in a containment hold, letting him know we were there. Then we could hold his hand or wait for him to hold ours – when he did, we didn’t want to ever pull away.

Josie holding her son

I longed for anything that would make me feel like a mother. To change a nappy or give him a wash, not just staring through a Perspex box.

After the longest three days we finally held our son. That moment will be forever ingrained in my heart.

Life in NICU is one step forward, two steps back. Exhausting and heart breaking, but you find the strength to keep going.

Usually I was dropped off at 8am and picked up at 5pm, home for tea and then back to say goodnight. I read by his side, wrote a diary, sat for hours watching him, stroking his hand.

Josie's son in hospital

Soon I felt like a pro – I knew what temperature to defrost his milk, how much to draw up and when I needed a nurse to do a quick pH test. I spent hours expressing by his side, storing as much milk as I could for the day he could gobble it all up.

Our milestone moments? When he was no longer intubated but on CPAP and low oxygen. When he was putting on weight and having 0.5ml of milk, then 1 ml. When we could finally dress him, and put a teddy in his incubator. They were all documented, photographed and celebrated.

We watched other babies come and go. Babies smaller than ours were whisked to other hospitals. Other parents entered our world - we were handing tissues as we passed, not wanting to interrupt their private moments but letting them know they weren't alone. We waited to have a high dependency baby, no longer in an incubator but snuggled in a heated cot – finally that day came.

Josie's son being held

Then our tiny boy was chunking up and I attempted to breastfeed. We high fived as his medication doses were slowly lowered. But when we eagerly skipped into NICU one morning, expecting to see his name proudly on the nursery board, it wasn’t there.

"He's not quite ready yet, he's still de-satting too much." The nurse could see how crushed we were. "Don't forget he's only four weeks old," she added, "he's doing really well". Thinking back, we’d been rushing to get home and finally become 'normal' parents.

We'd ridden the waves of small yet massive achievements, hoping he would be a miracle baby, born at 29 weeks and out into the big wide world in four weeks! We would have to accept reality. Our life continued, scheduled around the hospital.

One morning we walked into high dependency and he wasn't there! A nurse hurried over with a big smile. "Don’t worry – he was moved last night". And she pointed to the nursery.

He'd made it! Gone were the wires and his feeding tube. Just a little machine monitoring his oxygen levels – he'd never looked so free.

Josie and her family

We celebrated his first bath. We were ticking things off one by one.

Then we were asked about rooming in. We could be together for a whole night. Time to ditch the final monitor. No more machines or alarms, just me and my boy.

I was scared. I'd subconsciously relied on the machines – this was a leap of faith. That first night together I stayed awake listening to him breathe. Was it too fast? Too slow?

Then we had the all clear. After being handed a bag-load of meds, we said our final good byes and carried our boy out to the car. For us, becoming 'normal' parents took nearly six weeks.

Josie's family ready to leave hospital

But life was never going to be completely 'normal'. We had more milestones to reach – tests to take and medication to wean off from. A whole new set of challenges to face.

And little did we know, 19 months later, we would back in NICU again with our youngest son, starting yet another journey. But that's another story……

Josie with her youngest son

Josie decided to team up with her close friend Laura to start their own business Pudding and Chops, to design and sell alternative milestone cards. Their cards aim to bring a little bit of humour to some of the tricky times that all parents go through.

They have developed a new range of cards specifically to support NICU parents on their journey.

For every pack of cards sold Josie and Laura will be donating £2.50 to Bliss – this will make a huge difference to the 90,000 babies born premature or sick.

You can read Josie’s blog here.

Pudding and Chops

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages. If you would like to share your story with Bliss, please email media@bliss.org.uk

 

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