Little Miracles for premature babies.

By KATE WALTHER

The night my daughter was born I couldn’t look at her. I heard her tiny cry, like a lost kitten, and saw her miniature 1 kg frame and turned my head away, shocked at how fragile she was. How my body had failed her at just 26 weeks gestation. Luckily, she was born fighting.

So many times in her 4 month stay in the NICU we would hear the mantra from her doctors and nurses – 2 steps forward, 1 step back. It was a warning to expect turbulence, even when things seemed good, but it was also a source of comfort when things were bad. I knew what it meant before – intellectually at least – but I didn’t understand what it was like to live it day by day. Hour by hour. Beep by mechanised beep on those damn monitors.

As we watched the screens, mesmerised by the blue line, (oxygen saturation), life quickly became about seconds. It seemed as though we lived in a cocoon where time slowed to the sound of those alarms. Life continued around us at breakneck speed, but we remained so focussed on the numbers on her monitor that we barely noticed. When you live your life by seconds, something goes numb inside. You live on the edge of your seat, waiting for that breathtaking step backwards. Dreading it.

Lucy’s first month went by slowly, but without a backwards step. She was strong, and amazed her doctors, who like us waited with baited breath for what was inevitably to come. And then it came. Infection. And even though we saw it coming – even though we were warned, and the signs were there – it changed me. I felt vulnerable in a way I could never have comprehended. Desperate. Exposed. I bargained with the universe to take my life instead of hers so many times.

The day we knew for sure she was sick I couldn’t bring myself to stay at the hospital. I wanted to – I was so afraid of not being there. Of being at home and getting that phone call. “You need to come in now. Things are touch and go – we’re not sure if there will be another step forward.” But I was a wreck, and she needed strength, not tears.

This is where the NICU team stepped in for me, their experience and fortitude making up for my weakness. An hour after I left I got the phone call to say she had been ventilated, but her doctor was reassuring. “She is on a very low setting. Don’t worry. She is in good hands.” He and a very special nurse asked to take a double shift to take care of her and get her through the night, calling with hourly updates. Her nurse, Esther, sang to her in Chinese and stroked her gently to sleep. It may have saved her life, I can’t say for sure, but I will forever be grateful for her willingness to care for my little girl in her hour of need when I just wasn’t strong enough. I’ve learned that strength is relative – as much as I felt like I had failed Lucy, not being there that day was the best thing to do for us both. The only thing I could do for her was to let her fight on her own.

Slowly she recovered – those two steps forward took another two weeks. She fought three different ventilators and had to be sedated. She fought too hard, and wouldn’t let them breathe for her. She even extubated herself, something no one believes unless they witnessed it. She’d had central and arterial lines, was put back onto a drip, was given several blood transfusions, antibiotics, steroids, a nebuliser and shift after shift of extraordinary care from the staff in the NICU. And finally, slowly, she emerged and clawed her way back to health.

Then the doldrums set in. 6 weeks of no progress.Of no steps forward or back. We weren’t quite out of the woods, but we could see the fields beyond and just out of reach. Other babies came and went passed us, but she just kept fighting. On and off CPAP and low flow oxygen, specialist after specialist.

Day after day, beep after beep. I settled in and watched those numbers. When I wasn’t there I called at every shift change, desperate to know what the blue line was saying.

And one day when I called the blue line had moved. Her oxygen levels were stable. Her reliance on the supplemental oxygen was decreasing. Almost to air. I had pictured the moment through those beeps. One day this will be different, I had told myself. She can’t stay in here forever. One way or another things will change. In a few months she will be home. Yet when her doctor told us the news of her impending release I felt that strange numbness. Exhaustion perhaps – I had been there all day every day for 119 days straight with the exception of 4 days. I felt a mental fatigue. I had long since resigned myself to riding the wave of that blue line, every beep feeling like an eternity. Every daily heel prick like a huge developmental milestone just waiting to happen. Emotion had left me weeks ago.

I had missed so much – my final three months of pregnancy which I had so cherished with my son. That first few days in hospital, just you and your baby against the world. The quietness of night time feeds, having the world to yourself with just a tiny little person as company. The daily grind – dressing her, feeding her, going for walks. But life truly does go on, with or without my permission, and we barely had time to blink before we had a newborn at home. Gradually, a wonderfully normal existence fell over our family and we settled into a nice comfortable rut.

Lucy still fights every day. It’s in her nature now, and I will never know how changed she is by the way she came into the world. There are no more steps backwards. She laughs a lot, is madly active and terribly cheeky – boy can she throw an epic world class tantrum. But mostly, she brings everyone around her immeasurable joy. We will bear the scars of her time in hospital forever, she and I. We will be forever changed by the experience, her father and brother too. I am so grateful for the love and support we received from our family and friends, and from the staff in the NICU who saved her life so many times. And although part of me wishes that we never went through the turmoil of prematurity, and especially the physical pain that Lucy must have felt at times, I know it has made me a tougher person, able to accept the limits of my own strength and still get through.

Funding for the Royal North Shore Neonatal ICU is scarce, and more funds are needed to run the unit- to purchase new pieces of equipment and save the lives of babies like Lucy. To help create another miracle like Lucy’s, Our family is paying it forward! We are holding a Little Miracles Trivia Night on June 14. For tickets or to donate, please visit http://rnsnicufundraiser.wordpress.com/ .