A farming couple who held their baby girl for the first time when they said goodbye hope her short but precious life will make a difference to other sick or struggling newborns.
Cory and Emily Norman spent an anxious three weeks in Waikato Hospital's neonatal intensive care unit (NICU) last March after their daughter Kelly June Norman was born at 23 weeks and six days.
Emily, 36, had an weakened cervix that was unable to hold the pregnancy any longer. At 12 weeks a stitch was put in to keep it together, but it didn't last.
That, coupled with complications, caused her waters to break at 23 weeks and two days.
Kelly had just surpassed the 23-week stage where a baby is considered viable when she was removed from her mother via emergency caesarean section and rushed immediately to the NICU. She was the youngest baby there.
The couple, who live in North Waikato, about 45 minutes from the hospital, were given accommodation nearby so they could be close to their daughter.
"For two weeks Kelly did really well, it was quite surprising. And then the final week [when] things started deteriorating they also gave us a room on the ward where we could sleep and stay," Emily said.
At 18 days Kelly got an infection affecting her bowel. She had surgery but her small body was unable to cope and she died 24 hours later.
Kelly remained in an incubator the entire time she was in NICU.
"We were definitely able to touch, but we were never able to hold her or take her out until she was gone," Emily said.
"The reality of the fact that we weren't going to be able to take Kelly home and that she was passing away was the toughest, but every day since has been tough. It has been more than a year now and it has never gotten easier."
Leaving hospital without a baby was heartbreaking.
"I wish I could tell parents that it gets easier," a tearful Emily said. "If anyone is going through this I'm so sorry. It's all those expectations. It's not just losing your baby, it is losing all the things you planned to do, it's losing all the memories you are not going to have and sometimes that's the hardest part."
The couple said patience and trying to understand how each other was feeling helped them stay together.
"I still have days when I break down, just stop work for five minutes and have a good cry," said Cory. "I've had days I've never had in my life actually and I just can't get the motivation to get out of bed. It's really strange to feel like that, very difficult."
While the three weeks at the NICU was a blur for the couple, they still remembered the kindness of seven or eight nurses they dealt with regularly.
"They were all fantastic, they all care deeply about all the babies they take care of and who the parents are and what they are going through," Emily said.
The couple are organising a gala dinner in Hamilton in July to raise $25,000 for a special bed for babies needing respiratory support or surgical care.
Cory's initial idea had been to auction off beef from his farm, but the idea snowballed into a gala dinner where a cow will be auctioned alongside other major items.
"We really wanted Kelly's life ... to have purpose," said Emily. "And hopefully that's to help other little babies and staff accomplish what they want to accomplish, which is keeping them alive."
NICU charge nurse manager Chantelle Hill said money raised at the gala dinner would help replace vital equipment.