Beth Rees said she felt a huge sense of relief when her healthy looking baby daughter Florence was put safely into her arms following a straightforward delivery.
But only a few hours later the newborn needed to be rushed to the neonatal intensive care unit with severe breathing problems and blood oxygen levels at dangerously low levels.
She remained stable for the first 24 hours on the unit until she began having a seizure in her dad Stuart's arms, followed by a series of more violent seizures which hospital staff struggled to control.
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The decision was made to take the one-day-old child away from her terrified parents for an urgent brain scan - the results of which were truly life-changing for the entire family.
"Flo had had a massive bleed in her brain and were told there were no guarantees that she would survive the night. The bleed had damaged her brain but there was no way of knowing to what extent, so even if she were to survive we were advised to prepare ourselves for the very real possibility that Flo could be left severely disabled," said Beth.
Thankfully Florence did make it to the morning, and over the course of the coming days her clinical team at the University Hospital of Wales found the right combination of medication to control the seizures and change her condition from "critical" to "stable".
But the newborn was about to face another huge challenge. During the days that followed, she started suffering with severe reflux which caused her to vomit up all her feeds.
As a new baby who was now rapidly losing weight, this very quickly became the biggest and most urgent cause for concern. It took another seven weeks for the clinical team to stabilise Florence's feeding enough for her to go home. During those weeks, her mum and dad took it in turns to hold a constant vigil at her side.
Beth, recalling the events of May 2018, added: "I didn't want to leave Flo for a minute, not even to get lunch. I felt completely bereft that this was happening to her and terrified about the completely uncertain future that I felt lay ahead. I would just sit by her side with my box of tissues and cry."
Florence finally went home with a nasogastric tube (NG) tube to receive her feeds. Though Beth and Stuart had wanted more than anything to take their daughter home, they admit that for a good while things felt that they had gone from bad to worse.
After only a month, their daughter was admitted again and she continued to vomit up her feeds. Her parents said her growth and general health were suffering as a result.
Still very fragile, Florence caught infection after infection and would need admitting to hospital repeatedly for observation and nutritional support. With toddler Seb at home, Beth and Stuart's families rallied around to help.
"Those stays in hospital were incredibly hard. I felt so guilty about being away from Seb but with Flo so incredibly poorly, I knew I had to be with her," Beth added.
"At certain points Flo would vomit up to 20 times a day and some of that would be blood. I found it almost impossible to do anything with her or enjoy time with her because I was feeling so sad, and also because even moving her slightly would make her sick."
Beth said the play team at the Noah's Ark Chidren's Hospital for Wales made a huge difference.
"The play specialist helped us see the child beyond the illness. She knew exactly what to do with Flo and would bring us play equipment and include us in activities so gradually we felt more confident to do the same," she added.
"She introduced us to the sensory room so when Flo was well enough, we got a break from our room and she'd encourage me to take breaks while she took care of Flo so that I could go and have a shower or get some food. It was such a tough period anyway, it's hard to imagine how much harder it would have been without that kind of support."
After six months of shuttling between home and the Island ward at the children's hospital, Florence had an operation to fit a gastrostomy tube so that she could be fed directly through her stomach instead of a naso-gastric tube.
The procedure made it much easier to feed her, but hospital stays remained a frequent part of the family's life right up until the first lockdown in March 2020.
The break from fighting off the common viruses and infections that she caught so easily in normal life gave her body the chance to grow and strengthen. Though there have been a few blips along the way, Florence has now managed to mostly stay out of hospital for the past two years.
"The change we've seen in Flo has been nothing short of incredible. Early in that first lockdown she got up and walked for the very first time, something we were never sure she'd do," Beth added.
"And even more incredibly - given her very rocky start with food - Flo has started to eat. She still receives her nutrition through her gastrostomy but that's such a major milestone. In fact every little thing is a big thing for Flo – every ounce of weight gained, every bit of food eaten, every infection avoided.
"Even though she still faces a number of developmental challenges she understands everything and is the most loving, cheeky and determined little girl."
Beth, from Heath, Cardiff, said three-year-old Florence's strength and determination has inspired her to sign up for the Cardiff Half Marathon in March to raise funds for the Noah's Ark Charity.
"We've always wanted to give something back to the hospital which effectively saved Flo's life and now she's doing so well, I finally have the time to.
"When I'm running, she's always the thing I think about - how she's been through so much and how determined she is. I tell myself that Flo never gives up so I'm not going to either.
"Life isn't as we expected it to be since Flo came along but we're so grateful and thankful to have her here. This is my way of saying thank you to the children's hospital for the continuous support they've given us over the past four years.
"Having the equipment and the facilities and the play specialists there to support us has all played such a vital role in our journey. We still have lots of things to worry about that we never had to worry about before but there are so many more positives then negatives in our lives these days."
While she was incredibly grateful to hospital staff for their unwavering support, Beth said the family would have benefited from an emotional support service.
"Flo's condition came as a total shock to us and our life as we knew it just vanished before our eyes. I couldn't even begin to process what had happened in those first few weeks of her life on NICU and there was no respite from it when we went home because she was still so sick and we were in and out of hospital continuously.
"We lived with this constant threat that we might still lose her as well as the complete uncertainty over whether she'd ever do even basic things like eat, walk and talk, let alone things like go to school or ride a bike.
"Life felt so sad and hard and heavy during those hospital days and I know it would have made such a difference to have had someone who was just there to help me process it all and understand my feelings, even if it was just to tell me that what I was feeling was all perfectly normal.
"I think I still carry the trauma of it all to this day and had I had someone independent and non-threatening to support me at the time, it would have made such a difference to how I was able to cope."
The Noah's Ark Charity is looking into how it can work with its hospital colleagues to provide more emotional support for families. For more information about the charity and how to help please visit https://noahsarkcharity.org/
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