Emma’s Diary Note: 21/11/16: Oral glucose tolerance test at TCH followed by growth scan at Fetal Medicine Unit (FMU). 25 weeks + 4 days. Due date: 3/3/17.

Little did I know that our world was about to be turned upside down, with the scan identifying the likely early arrival of our baby. I remember not really understanding what the doctor was saying at first, as I felt great and we’d been hiking in Tasmania the week before. After a long journey to fall pregnant in the first place, this was something that hadn’t entered our minds. The possibility of having a premature baby was the beginning of an emotionally challenging time, that continued until we finally got to go home together, a family of 3, almost 14 weeks later.

After going home to pack a bag, I was admitted to hospital for bedrest- until the baby was born or I had surpassed the goalpost of 28-30 weeks. I hoped that I would get to go home again before our baby was born and thought that was pretty likely initially. I sure felt a bit like a fraud, sitting in a hospital bed, unable to return to work, waiting.

Leila arrived at 28 weeks, weighing in at 1053g- a mass that the doctor remarked at the time was ‘a pretty good size for a premmie’. I had joked with the midwife that the baby could be the first baby born in Canberra in 2017- at 31 weeks gestation, but instead Leila arrived in early December. It seemed that she had received the memo about staying put until 28 weeks, at which time the risks of complications are somewhat reduced. Leila would not have survived without the amazing care of the Neonatal Intensive Care Unit (NICU) and Special Care Nursery (SCN) staff and the equipment they used to constantly monitor her, help with her breathing (CPAP) and provide her a home in the outside world, after leaving her natural home too soon, due to an infection that we didn’t know was there.

During her hospital stay, we hung on every test result and piece of information that suggested that Leila would be OK. Multiple head ultrasounds looking for bleeding due to immature blood vessels being damaged as a result of her early arrival; blood transfusions; us as parents giving consent for a medical procedure to be performed on someone who was our responsibility for the first time; awaiting blood test results and the constant watching of Leila’s oxygen saturations as they fluctuated up and down (a trap we were warned to avoid, but couldn’t)- too high and this could affect her eyesight, too low and she turned blue, needing physical stimulation to start breathing again. We watched as an infection came and went, and as she endured painful eye tests- there seemed ample opportunities for things to go south. It was not long before we realised how fortunate we are to live in Australia, where premature babies are given a fighting chance for a healthy life.

It wasn’t all waiting for test results and worrying for her health. We were able to watch Leila grow each day, in a way that we would otherwise not have experienced. I still recall the feeling of getting to hold her for the first time, 3 days after she was born. She was so little and fragile, with multiple tubes protruding from her arms and her ‘snorkel’ on her head, but so lovely to finally cuddle. I was surprised her skin wasn’t transparent. I think I broke all the rules, falling asleep while she was snuggled in against my chest. The first time Ray had a cuddle, he cooked her- bless him- sending her heart rate sky high and Leila going back to her little nest sooner than expected. Learning how to change her nappy in her humidicrib (which Ray affectionately referred to as her ‘shed’), massaging her head when the CPAP mask was removed for a moment, washing her tiny face, or holding her tiny hand, all became valuable and an eagerly-awaited part of every day. Watching her grow each day required patience and some awareness not to wish the days away, knowing that she was getting stronger each day but not wanting to rush those precious moments of her early life.

When we couldn’t be beside her ‘shed’, we realised the importance of simple innovations like the Zaky hand, which mimicked our own absent hand, and the NICU CAM which allowed us to peek in on her from home once she had moved into the SCN.

All of the staff in the unit had a role to play in the care and development of our little Leila. As opposed to new parents of full-term babies, we were the recipients of 11 weeks of expert knowledge, that enabled us to go home feeling well-prepared- a benefit not afforded to most first-time parents. We are so fortunate to have a healthy, rambunctious 18-month old living with us- exploring the world and learning more each day. Without the support of the Newborn Intensive Care Foundation (NICF) and all the staff at the NICU & SCN, this may not have been possible- and for this we will be forever grateful.

Emma & Ray Ellett