When your baby is born premature….

From the moment you see those two pink lines on a pregnancy test, you look forward to the day when you’ll meet your child. You excitedly anticipate the birth and the bonding and, a few days and some sleep deprivation later, taking your little one home. For most of us, that scenario plays out fairly well to plan. But others aren’t so lucky. For some, that journey home is long and heartbreaking. My first daughter, Olivia? She was content to hang around inside until 41 weeks and then, after a pretty long and traumatic labour, arrived via emergency c-section. But, really, that was the worst of it. We took her home, wondered what the hell to do with this little bundle, and (once we’d figured it out as much as you ever DO figure parenting out) had a pretty happy time of it.My second? Not so much. I often say it felt like the world’s shortest pregnancy. I didn’t find out I was expecting until I was eight weeks along. At 25 weeks I went into hospital on bed rest and, at 30 weeks and two days, found myself once again in an operating theatre, meeting our daughter, Sophia Rose, for the first time.

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. I had managed the heartbreak of being away from my husband and daughter (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 Neonatal Intensive Care Unit (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 my husband’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. 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.

Sophia has chronic lung disease. Sounds worse than 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 had her home, she needed five medications per day to keep her well.

My sister gave birth to a healthy 4.3kg baby girl while we were still in NICU and I think she felt guilty that she could enjoy having a ‘normal’ life with her baby while our lot was more complicated.
“Don’t you just feel like crying every day?” she asked me, as Sophia and I had one of our daily battles of the syringe. But I didn’t. I was just so happy to have her home that I didn’t care what I had to do to keep her there. And she was (and remains) such a beautiful, happy, placid baby.

Any parent of a premature baby will tell you that it’s a hard slog. We’ve had to make some changes to our lifestyle, including dropping to one income because child care just isn’t an option for someone with Sophia’s health issues. Life sometimes seems like a blur of pediatrician’s appointments, blood tests, dietician and speech pathologist consultations.

We aren’t exactly social butterflies for fear of her contracting some hideous virus…but you can’t wrap the whole family in cotton wool. It’s a difficult balance and, sometimes, no matter what you do, kids get sick. We just spent two weeks in hospital because Sophia’s lungs didn’t cope well with the flu. And for the second year running, I was in hospital for Olivia’s birthday…I think I was more upset that she was.

But, you know, if that’s the worst we have to deal with, we’re pretty lucky. One little boy that Sophia was in NICU with is still in hospital. He’s nearly 17 months old and he has never known life outside those four walls. His mother visits every day and looks forward to taking him home one day soon. I am in absolute awe of her strength.

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.