If I had to name one defining incident that changed my life (and indirectly led to HerCanberra.com.au being created) it would be the premature birth of our youngest daughter.

Four years ago, almost to the day, I was in Canberra Hospital. I was 27 weeks pregnant with my second daughter and things weren’t going so well.

Two weeks before, feeling a little peaky, I had walked out my office door – and I never went back. Within 24 hours, I was admitted on bedrest and that’s where I stayed until 31 July, 2008 when Sophia Rose was born at 30 weeks.

For nearly six weeks, I had fairly calmly dealt with events. I coped with the utter isolation of livening in a 3m x 3m hospital room with really only the midwives and Dr Phil for company (and a wonderful next-door roomie called Katrina). I had managed the heartbreak of being away from my husband and daughter (who turned two while I was in hospital). I honestly thought id endured the worst. But nothing could have prepared me to the fear I felt when they lifted my little girl from my belly… and I saw just how tiny she was.

I glimpsed all 1.43kg of her – briefly – before she was whisked away to The Centre for Newborn Care (NICU). She was surrounded by a tangle of wires; her sweet face obscured by the tube that was breathing for her. And then she was gone… and the rollercoaster journey began.

I thought I was tough. My husband, Drew, and I had already survived the heartache of miscarriage, infertility, and assisted reproduction. But honestly? Nothing can prepare you for watching your child struggle to stay alive. The loss of control is shocking; the situation surreal… such a stark contrast to the first few sleep-dazed, pyjama clad weeks of getting to know my first daughter.

The hardest thing for me was not being able to hold her for five days. She was so little, so fragile, that even stroking would agitate her. So surrounded by the constant alarms of monitors and the grave faces of other parents, I watched her through the plastic windows of her humidicrib and willed her better. After days of feeling an almost physical pull to embrace her, they finally placed her on my chest and nuzzled in – screaming blue murder when they took her away. And my heart knew she recognised her mum.

For 71 days, we existed inside the NICU bubble. Our outside life became a logistical nightmare as we struggled to arrange care for Olivia and Drew’s work commitments, breastfeeding and ‘cuddle’ times. We had good and bad days. We watched countless other babies get better and go home, and there were times when I didn’t think we would ever leave. I rarely let myself think the worst, but there were times when I really didn’t know if she’d make it… and there are just no words to describe the gut-wrenching emotion that provoked… I won’t even try.

But eventually, nearly four months after I was first admitted, we did. And it dawned on me that getting her home wasn’t the end of our struggle… but just one hurdle crossed.

The first two years were tough. Sophie has chronic lung disease. Sounds worse that it is but, basically, her lungs aren’t much chop and a cold for any other kid could mean pneumonia for her. So, even though we got her home, she needed five medications per day to keep her well. Even today, whenever she gets a cough, we’re on edge waiting to see if it will mean a trip to the ED. We’ve been lucky that the last 18 months have been hospital free (I think I have developed a TCH phobia from far too much time within its four walls).

Any parent of a premature baby will tell you that it’s a hard slog. But some have it worse than others. Whenever I would feel sorry for myself, I would remind myself of the mum whose little boy (born at 24 weeks) was still in hospital aged 17 months – he had experienced the total of just one week ‘outside’. His mother would catch the bus every single day from Belconnen to visit him… I was in absolute awe of her strength. I remember her saying to me one day “Samuel was born on a Wednesday, and so every Wednesday I tell myself I am one week closer to having him home.”

Then there was the mum who had delivered twins – one who died at birth, and the other who had been diagnosed with a severe genetic disorder right after the birth. “We’re hoping we’ll be able to take him home for at least a few weeks,” she said. “But he’ll never be able to breathe or eat by himself.” Every single day in NICU was a mix of heartbreak and hope.

Our family – and thousands of others from Canberra and southern NSW – will always ALWAYS be grateful for the care provided to them by the staff of The Centre for Newborn Care at Canberra Hospital. I owe them our daughter’s life. Every baby that passes through the NICU’s doors is fortunate enough to receive their expert attention – they take shell-shocked parents and guide them through the emotional and confusing and heartbreaking journey of having a premature baby. They teach them how to touch their fragile tiny creation, how to feed them, how to feel like a mum even when the ‘normal’ functions of motherhood are taken away from you. They take care of the parents as much as the babies.

When you eventually leave the doors of the hospital, equal parts elated and terrified, they provide support. They give you the confidence to enjoy motherhood after such a shocking introduction. They tell you it’s ok.

The Unit admits approximately 600 babies each year suffering a wide range of problems originating in the newborn period. These range from extreme prematurity, babies weighing only 500 grams at birth, to the other end of the spectrum, babies who are large for their gestational age and occasionally in excess of 5 kilograms at birth. The doctors and nurses from the unit care deeply for every single one of these children – I remember entering the NICU one morning to find most of the staff in tears – they’d lost a baby during delivery, and it rocked them all. To them, it’s not just a job.

Sometimes, I find myself close to tears when I hold Sophia’s tiny hand, and notice the faint scars from the lines that once crisscrossed her body. I remember cupping her tiny head in the palm of my hand… the twig-like limbs that jerked and strained against the tangle of wires that were her lifeline. But most of all, I remember her feistiness; her determination to fight… even when she hardly had the energy to breathe. And I think how incredibly lucky we are to have her here. Alive and perfect.

Help give other parents the same change to take their babies home – support the Newborn Intensive Care Foundation today.