Vanessa Neilson, 30, Hobart, Tas
My nine-month-old son Toby's body went rigid and started turning blue. 'Call an ambulance!' yelled a woman.
Meanwhile, the other parents at the kids surf competition we were at watched with concern as I calmly tried to hold my breath for as long as Toby - so I'd know when he was really in trouble. Seconds ticked by and Toby went a horrible shade of grey.
Eventually he relaxed enough for his airways to open. It was time to start resuscitating him.
I massaged his chest and breathed into his mouth until his lungs started. The soft sound of his breath was music to my ears.
By the time the ambulance arrived he was sitting on my lap giggling. 'He's okay now,' I muttered, exhausted.
This terrifying scenario was far from new to me. Since his birth, Toby had been having episodes like this.
Born 16 weeks premature on May 31, 2009, and weighing just 760g, my husband, Kent, 41, and I were told Toby would have some problems.
But nothing could prepare us for repeatedly having to watch as his heart rate plummeted and he stopped breathing.
'He has apnoea,' the doctor explained. It meant Toby would stop breathing for no apparent reason. He also had weak lungs. The doctors said both were common in premature babies but that he'd grow out of it. If only that had been the case.
At each episode we had to wait for up to a minute before resuscitating Toby, to allow for his muscles to relax and his airways to reopen. 
My daughter Aimee with baby Toby.
It seemed like our lives were torn apart. We had to stay near the neonatal unit in Hobart, four hours away from our Burnie home. Our other children - Larissa, 12, Anthony, 10, and Aimee, seven, were looked after by their grandparents.
'Mummy and Daddy will visit you as often as they can,' I told them over the phone.
The problems started when Toby was just a week old. A nurse called to say he was going onto a ventilator because he'd had a dangerous seizure that had left him fighting for breath. 'I'll come straightaway,' I'd said.
It was the first of many times I thought Toby would die. But by the time we arrived at the hospital, he was looking better.
As he got closer to full term he got stronger and doctors talked about letting him go home.
'We don't know why he's still having seizures or why his heart rate plummets each time,' a doctor said. 'In fact, we may never know. But we're happy to teach you how to resuscitate him so you can take him home.'
It was terrifying. We'd be responsible for keeping Toby alive.
We were taught how to give him mouth-to-mouth and massage his chest to bring him back to life.
Then, as we were preparing to bring Toby home, he became really sick.
He had a seizure, turned blue, was resuscitated and then had another one directly afterwards. It went on for two days and all we could see of Toby was his cot as doctors stood around him, continuously working to save his life.
Tired and shocked by the turn of events, I sobbed in Kent's arms. 'He'll make it, he has to,' I whimpered.
We nearly lost him about 1000 times in 48 hours. Then the doctors realised he had a urine infection. That's what was causing the massive number of seizures. 
Our family sticks together.
By November, six months after Toby was born, his seizures slowed to a couple a week and he was finally allowed home. We were overjoyed.
A few days later, when Toby was having a midday nap, something made me check on him.
He was blue and lifeless, lying in his cot. My training kicked in and I jumped into action, breathing into his mouth until he could breathe himself.
Then his seizures became more frequent - up to eight times a day. I was terrified to take him out and the few times I did, it panicked everyone around us who didn't know what was happening.
'I can't cope with this anymore,' I sobbed, realising it wasn't working at home.
The hospital agreed and Toby was admitted again. Doctors said he could be there for some time and suggested we relocate closer.
It was a hard decision because we'd lived in Burnie all our lives. Our families and friends were there and the children were settled in schools.
'We don't have a choice,' Kent said. 'This is our son's life we're talking about.'
 We've been in Hobart since April 4 and Toby was allowed home at the beginning of May.
'You're staying here this time,' I told him as I cuddled him on the lounge.
Thankfully we only need to resuscitate him about once a week now, which is a vast improvement. We're hoping he'll eventually grow out of his seizures but the doctors can't tell us that will happen for sure.
Toby celebrated his first birthday on May 31 and we had a huge party to celebrate.
It's amazing he's made it this far and we're all so proud of him. After all, who else can say they died thousands of times by the age of one?
Babies who stop breathing - Apnoea of prematurity (AOP) is when a premature baby stops breathing by itself.
- It's common as a premmie's central nervous system, which controls breathing, is often not mature enough to sustain nonstop respiration. This causes large bursts of breath followed by periods of shallow breathing or breathing that has stopped.
- The breathing problems may start as soon as two days after birth and can last for up to three months.
- The lower the infant's weight and the more premature it is, the more likely he or she will have AOP.
- Most of the time, premature infants will receive medical care for AOP in the hospital. It usually resolves on its own with time.
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