Andrew and Emma Gower always knew their baby daughter, Lucy, was "daddy's girl".
Throughout her pregnancy, Emma said she could feel the tiny baby girl kicking furiously whenever he was around.
Andrew was there through the roller-coaster of Emma's pregnancy and was there when Lucy was born in the late hours of a Friday evening last year.
And when Lucy died an hour-and-a-half after her arrival, her father was there holding her close.
Andrew and Emma's story began with a friendship, as they attended primary school together in Tamworth, NSW, but it wasn't until Andrew's 20th birthday party that they became a couple. They were married in 2011.
Emma, a midwife, and Andrew, operations manager of a car dealership, were looking forward to having children, with good news awaiting them after they returned from a cruise in March 2012.
Apart from morning sickness and feeling lethargic, Emma said the first trimester of her pregnancy was uneventful. They received the first hint something might have been wrong at the first ultrasound scan, at the end of the first trimester.
"The first two minutes was fine," Emma recalls. Then a doctor came in and told the couple that the foetus had a large nuchal fold (a flap of skin at the nape of the neck), which is an indicator of various genetic disorders, including Down syndrome.
The pair walked out of the scan in shock.
"We were in tears. We wanted to see arms and legs, not to find out something like that," Emma said.
After undergoing chorionic villus sampling to determine whether or not the baby had genetic disorders, the couple received some good news when a nurse rang to say their unborn baby had normal DNA.
"We had a mini-celebration," Emma said. "We felt so lucky, like we'd dodged a bullet."
A further three scans at 19, 22 and 25 weeks showed that everything was normal.
But a few days after her 25-week scan, a grossly swollen Emma said she knew something wasn't right, feeling "this intense, uncomfortable feeling I couldn't shake".
Fluid was gathering in her stomach, her energy was down, and she felt a constant discomfort.
Another scan revealed the baby had fluid on her lungs and under her skin. Ordered to go to Newcastle's John Hunter Hospital, Emma was put on bed rest.
Doctors diagnosed the baby with hydrops fetalis, a serious condition affecting the body's ability to manage fluid, at 29 weeks.
Emma spent the final weeks of her pregnancy swollen, tired and frightened about the future of her unborn baby. Then an ultrasound revealed the urgency of the situation and Emma was prepped for an emergency caesarean.
"A whirlwind of emotions took over, partly excitement at meeting our new baby, but fear too about not knowing how ill the baby really was.
"I knew the reality was she probably wouldn't make it."
Surrounded by 12 doctors, Emma gave birth to her daughter at 11.38pm.
In the frantic minutes afterwards, and as doctors went to work on the silent newborn, massaging her failing heart, the baby was named.
"She was beautiful with a head of curly, black hair. We called her Lucy. It's a pretty girly name. She just seemed like a Lucy," Emma said.
"She didn't cry. She was alive though. The doctors said she was fighting so hard. They said 'we're trying to save her but we're not going to win'."
The couple said they had to decide whether to let the doctors continue working on her, or to spend Lucy's final hours in peace.
"So we asked the doctors to stop treatment. She had to be with us," Emma said quietly.
Emma said the hardest thing to deal with in the week after Lucy's death was leaving hospital with her arms empty.
"I just felt like a shell of a person," she said. "I went into that hospital with a baby in my belly and I was supposed to leave with a baby in my arms."
In the hours, days and weeks after Lucy's funeral, Emma came to a decision.
"I had two choices, crawl up into a ball and think the world is a nasty place, or I could get up and deal with it," she said. So she went back to work - where, as a midwife, she was surrounded by the excitement of new life every day on the maternity ward. She says that at first, every crying baby reminded her of Lucy.
"But I had such a supportive workplace, so it got easier. I had to separate my experience from everyone else's," she said.
"I had to say to myself 'that's their baby' with their experience and I have my own."
Logging onto the closed Bears of Hope webpage filled with women talking about their own similar stories, Emma said she could feel the support through the wealth of shared experiences.
"It was nice to know that we weren't alone, that someone else had gone through this, too. They know exactly what you've gone through and exactly what you're feeling."
Emma said she hopes sharing her story would help other people who may have gone through the same experience.
"A lot of people don't talk about it; they repress it, but it's something that happens every day to someone out there."
It's clear from the many photographs and mementos around their home that far from fading into memories, the story of Lucy will continue to be shared.
Although Emma and Andrew say it's too soon to think another pregnancy, they know that one day, when the time is right, a tiny brother or sister will come home to Lucy's nursery - where her photos will stay.
"Lucy will always be our first baby and we will always be her parents," Emma said.
"Her story will continue."
- Essential Baby
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