If I had to name one defining incident that changed my life (and indirectly led to HerCanberra being created) it would be the premature birth of our youngest daughter. Long time readers may already know her story…others may be hearing it for the first time. I first wrote many of these words for Mamamia back in 2009, during a particularly difficult time…but we got our happy ending.

On this day seven years ago, I was in Canberra Hospital. I was 30 weeks pregnant with my second daughter and things weren’t going so well. Six 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.

For nearly six weeks, I had fairly calmly dealt with events. I coped with the utter isolation of living 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, Drew, and daughter, Olivia, (who turned two while I was in hospital). I honestly thought I’d endured the worst. But nothing could have prepared me for 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 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 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 she 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 around 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 provokes…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. Sophia came home from hospital with chronic lung disease. Sounds worse than it is but, basically, her lungs weren’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. We’ve been lucky that the last few years 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.

Today, my baby girl turns seven. There was a time when I never thought we’d see this day, so to see her happy and healthy and bright and funny and just so full of life is such a happy occasion. Those difficult times seem like a lifetime ago.

But we’ll never completely forget. There are things that even time can’t erase – Sophia’s hands still bear 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.

Happy Birthday, my miracle girl xxx

Help for parents of prems, and their friends and family

Finding yourself the parent of a premmie is shocking, to say the least. Miracle Babies Foundation aims to make the journey through the NICU – and life afterwards – a little less lonely through their Nurture Program, which includes a free play and support group, in-hospital support for families currently in the NICU, and a 24/7 helpline for parents, friends and family.

Donate

The Centre for Newborn Care at Canberra’s Centenary Hospital is supported by funding from the Newborn Intensive Care Foundation. Whilst the ACT Government funds day-to-day routine activities within the Intensive Care Unit in the form of staff and stock, etc. additional educational, equipment and research time is inadequately funded and the development of new skills, new technologies and new insight is thus retarded. External funding allows these aspects of critical care to go forward, and expand the quality care of the Unit.

You can donate here.