Thursday 29 September 2016

'It was 143 days before I would bring home my baby'- Meet miracle baby Amy, born at 25 weeks

At just 20 weeks' pregnant, Judy and Gary Mullane knew their baby wasn't going to go to full term when Judy was diagnosed with placenta previa. But when baby Amy was born on week 25, they had no idea it would be 143 days until they could take their daughter home. Kathy Donaghy meets the parents and their now thriving daughter

Kathy Donaghy

Published 09/08/2016 | 02:30

Judy Mullane with baby Amy, who left hospital after 143 days just last week.
Judy Mullane with baby Amy, who left hospital after 143 days just last week.

For all parents, taking your precious new baby home from hospital is the kind of special day you'll never forget. For Judy and Gary Mullane, taking their baby Amy home after she spent her first 143 days in hospital, felt like a miracle.

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Judy says that day, just over one week ago today, when Amy finally got out of the Rotunda Hospital in Dublin, and got home to meet her big sister Isabelle (1), will be etched in her memory forever. And she recalls how Isabelle's face lit up when she saw her little sister, who she hadn't been able to meet until that very day.

It's been a long road for the Mullanes, who live in Dublin's Blackrock. Getting to a point where they could finally take their baby home was filled with many ups and downs, and days when baby Amy was literally fighting for her life.

Judy's pregnancy was straightforward until she reached the 20-week mark, when she began to bleed. She was diagnosed with placenta previa, where the placenta is low-lying, and told to rest. However the bleeds continued over the next few weeks. On February 28 of this year - the day of her husband Gary's 40th birthday - Judy woke up with a bad bleed and went straight to hospital.

Read more: 'He just fought and fought'- Miracle baby Arlo born at 24 weeks celebrates with Super Hero-themed Christening

She recalls a traumatic car journey from Kilkenny, where they had been visiting Gary's family, to the Rotunda Hospital in Dublin where a nurse was waiting to meet her at the door. Within minutes Judy was hooked up to a drip. She spent that night in hospital and had another bleed the next day.

Judy and Gary Mullane with daughters Isabelle (1) and baby Amy, who left hospital after 143 days just last week. Photo: Frank McGrath
Judy and Gary Mullane with daughters Isabelle (1) and baby Amy, who left hospital after 143 days just last week. Photo: Frank McGrath

Gary had just left Judy's bedside to go to work when her consultant, Dr Rishi Roopnarinesingh, examined her to find that she was already three centimetres dilated. Baby Amy's journey into the world had already begun only 25 weeks into Judy's pregnancy.

While the Mullane's knew that Judy's pregnancy going to term was not a realistic option, they never imagined that their baby was going to come at 25 weeks. Judy rang Gary to come back and Amy was born by Caesarean section that evening at 5.20pm weighing just 890 grammes, less than two pounds.

Judy remembers a doctor from the neo-natal unit taking her hand and telling her it would be a long road ahead but she says at the time she didn't really know what this meant.

As soon as she was born, Amy was taken away and intubated and put in an incubator. Judy says her memory of the time immediately after Amy's birth is blurred.

"I remember being wheeled down to see her. Her arm was the size of my little finger. You could never imagine anything so tiny. I think from the get-go I knew I had to be strong for Amy even though I've had a fair few meltdowns along the way.

"One of the hardest things was not being able to hold her until she was 10-days-old, because she was so fragile," recalls Judy. "You can't imagine how hard that is - not being able to hold your baby. That instinct to nurture your baby has to be put on hold. You have to take a back seat to allow others to become the primary caregivers, and this can leave you feeling helpless."

The Mullanes never envisaged that Amy's time in hospital would be as long as it turned out to be. It was a long road, as the doctor who had taken Judy's hand predicted.

"The neo-natal unit can be a bit of a scary place. It is alarms going off all the time but it is also a place full of hope. We just knew we had to be strong for Amy and we had another little baby at home so we had to make sure we maintained a happy home. We had to come home smiling for Isabelle, who was only 15-months-old at the time," says Judy.

"Our coping strategy was to take it day by day. Every single day we would write down something positive from the day, things like Amy taking her first drop of breast milk - that kept us going," she says.

While the medical team were amazing and supportive, Judy says the situation they were in left them with many questions.

"One of the first times I logged on to Google, the word 'unfortunately' came up. After that I didn't Google again. I would have loved some advice from parents who'd been in the same situation and could offer some insight," she says.

It was from their own experience that Judy and Gary started a blog charting their journey through the neo-natal world in which they found themselves. The blog is an intimate portrait of their lives as they tried to keep things normal at home, while at times being on an emotional roller coaster in hospital with Amy.

In their blog, 'Baby Amyazing', they document how they made Amy part of their family life at home by improvising with photos. They had plenty of these and would use them to talk to Isabelle about her little sister. Because of the restrictive policy regarding infection control that allows only the baby's parents into the neo-natal environment, Isabelle was never allowed to visit Amy. But by having photos at home that they all used to say 'Good morning' and 'Good night' to Amy, Isabelle knew her little sister before she made the special journey home.

Over the course of her 143 days in hospital, the Mullanes developed a routine. Judy would rise early and go to the Rotunda while Isabelle went to crèche and Gary, who works for an IT consultancy firm, went to work.

"The first few weeks in intensive care were just about surviving. I think breathing was Amy's biggest challenge. She was on and off the ventilator for the first 23 days of her life and she was intubated four times," says Judy.

"After she came off the ventilator she was on another breathing apparatus called a Bipat which delivers pressure into the lungs - she was on that for another 40 days and was being fed through a tube.

"At the time in intensive care it was day by day and it was scary. Amy kept forgetting to breathe. That was her biggest challenge until the very day we left hospital," says Judy.

In the course of her time in hospital, Amy became unstable a couple of times. A little alarm would go off when Amy literally forgot to breathe. On those occasions she needed oxygen delivered through a little device that fitted over her mouth and nose.

On those days Judy recalls thinking how much more could she take witnessing her little girl go through so much. However, despite the set-backs, Judy says she never thought her baby wouldn't make it.

"I always thought she'd make it. I had to believe that. Deep down I knew she was in the best hands with the Rotunda's neo-natal team and Amy's consultant Dr Breda Hayes," she says.

Five months later and a million mountains climbed, the Mullanes were finally given the go-ahead to take Amy home. There was a song that kept them going throughout the sometimes arduous journey to getting home, and that was Damien Dempsey's Bustin' Outta Here. On the day after Amy got home the family's story was featured on The Ian Dempsey Breakfast Show on Today FM, and Amy's anthem played. The broadcaster himself took their story to heart. By strange coincidence the number of days Amy had spent in hospital - 143 - had a special resonance for Dempsey. The number was a special code he had with his daughter meaning "I love you".

Settled at home now and enjoying being together as a family, the Mullanes are doing what they do very well by now; taking one day at a time.

They know Amy will have challenges - the winter will present its own challenge for her little lungs. She still has a monitor that will sound an alarm should she have problems breathing. But for now they are simply enjoying precious cuddles and just being at home.

"Isabelle is loving having her little sister at home. It's beautiful to watch Amy interact with her. We're just trying to get back to a bit of normality. It's only now this week, when we've stopped all the running around and shuttling between home and the hospital, that we realise how manic it was.

"We were just chasing our tails all the time. Just to be able to relax is great - to see her when I'm in my pyjamas is great," says Judy.

Amy has been in the world for five months now but because she was due on June 12, her corrected age is now seven weeks old. The Mullanes are waiting on her first smile any day now and when it comes it will have been worth the wait.

* Visit the Mullane family blog at babyamyazing.wordpress.com/

Making the most of your time in hospital

For parents who find themselves in the same situation as Judy, she offers a few tips to help make the most of the time they will spend in hospital with their baby.

1. Try to establish a daily routine in the hospital (e.g. cares, feeds, expressing) to give structure to your day. It will also help pass the time and make you feel like you have a purpose.

2. Get to know the nurses and doctors and make an effort to know their names - they are very important people in your baby's life in the neo-natal unit.

3. Get to know some of the other mammies and daddies in the unit - they will be at different stages of the journey so it's mutually beneficial.

4. The hospital is not a perfect environment but try to stay focused on all the good things rather than dwell on the bad.

5. Make the most of the resources available in the hospital (e.g. chaplain, social worker, lactation consultant, physiotherapist).

6. Keep a log of your baby's weight together with key medical milestones - this will help you stay on top of your baby's progress.

* You can find more tips on surviving NICU on the blog page, babyamyazing.wordpress.com, including tips on looking after yourself

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