Life in the NICU: A long, tough journey for baby born months early

The first thing most new mums do is hold their newborn baby in their arms, but for one Auckland woman this precious first cuddle happened a whole week later.

At just 24 weeks and five days gestation, and weighing little more than a pound of butter, 630gm, Olivia Agnew was too fragile to be held any earlier.

Today, just over a week after she was born on October 23and almost a year-to-the-day since her older brother Ollie-Mack died in utero, dad Jason Agnew, 33, said his daughter was doing well.

Given her gestation, the tiny newborn was healthy; tolerating small amounts of breast-milk via a feeding tube, had put on 84g, and while she was still on a ventilator, doctors were looking at removing her breathing tube soon.

On Sunday Olivia also had her first kangaroo cuddle [skin-to-skin] with mum, Amy Agnew, 34, and has opened her eyes to peer up at her parents.

"It was nice to have that bond with her again," said Olivia's mum. "That was really special, just having that skin close."

Already, Agnew said her daughter's personality was beginning to peek though.

"I've noticed she likes to point her toes quite a lot, we sort of nick-named her little ballerina," she said. "She's very sweet."

Jason Agnew said it was an "awesome feeling" to know the newborn was doing well - given he didn't expect to have a baby daughter till well into the new year.

"Honestly we expected her to die," he said. "I was kind of ready for it."

Olivia's parents, childhood sweethearts who have been married for 18 years, have already experienced the agony of losing a baby.

In their four years of trying for a child, they've had one miscarriage, followed by the loss of Ollie-Mack from an incurable condition.

"We lived in hospital for two weeks while waiting for him to pass on," Jason Agnew said. "We turned up expecting them to say he's a little sick and we are going to treat it."

Instead they were told, "Sorry" your baby is going to die; if it's born it's going to die, or it will die in utero'."

Jason Agnew said to be told a year on, five to six months into another pregnancy that their baby's birth was imminent, was "scary".

"It's really tragic, to feel like that [she would die]; the first few hours were torment."

According to Auckland National Women's Health annual report, in 2015, 12 babies were born at 24 weeks' gestation, 1.7 per cent of 691 births; and 10 were born at 25 weeks, 1.4 per cent of all births.

The percentage of those born alive at 24 weeks was 50 per cent, and at 25 weeks 90 per cent. Of those born alive, survival for longer than 28 days was 83 per cent for those at 24 weeks and 100 per cent for those at 25 weeks.

Amy Agnew cuddles baby Olivia yesterday in the NICU ward at Auckland Hospital. Photo / Greg Bowker

According to National Women's Health information database, rates of disability for extremely premature babies who survive are about 20 per cent, and are worst for those under 25 weeks' gestation.

Disability can range from mild, to severe and include cerebral palsy, developmental delays, hearing and visual impairments.

Typically those born under 24 weeks were not considered to be viable - with only three of six infants born at 23 weeks at the DHB in 2015 born alive - none survived longer than 28 days.

Olivia was born just shy of 25 weeks, via an emergency C-section.

However, it was a close call, with Agnew admitted to hospital, a week earlier - when Olivia was only 23 weeks and five days' gestation - two days short of viability.

Jason Agnew said it was "pretty tough, but we kind of became a bit numb and were realistic it was either going to go great, or it wasn't".

When Agnew finally got a glimpse of his baby girl, he wasn't convinced she was out of the woods.

"They took me to see her, she was wrapped in plastic, she looked pretty lifeless and was doing nothing," he said. "It was pretty traumatic actually, she was really small."

Agnew cut the cord and Olivia was put into an incubator and wheeled off to Neonatal Intensive Care Unit (NICU) .

"We didn't know at that stage, whether she's going to die or live."

Another week on and little Olivia is not quite out of the woods. She has a long journey ahead and isn't expected to head home till at least her due date - February 7, 2017.

Amy Agnew said it was hard having to put all your faith in the medical team and equipment, but she was grateful a service, like the NICU existed.

"It's not a situation, I would wish upon anyone, it's a long, tough lonely journey."

• To learn more about NICU and how to help go here