It was a shock to see how fragile she was

 

As the Republic’s most prematurely born baby (to survive) reaches her first birthday, Caroline Kelly’s parents share their story.

MY PARTNER Phillip was driving me to work at the Irish Financial Services Centre when I got cramping pains. It was my first pregnancy and everything had been more or less fine until that day – May 25th, 2011.

We phoned the National Maternity Hospital who said it would be best if we came in. By lunchtime, the pains had got worse but a scan showed everything to be normal. The doctors decided they would keep me in and I was moved to the pre-labour ward even though I was only 23 weeks pregnant.

The doctor there did an internal check and she said, “I’m really sorry but your baby is going to be born today and the outlook isn’t good.” I couldn’t believe what was happening and I burst into tears.

Very soon after that, I was moved into the delivery ward and was surrounded by midwives and doctors explaining what was going to happen before and after the birth. We were asked whether, if our daughter (we had just confirmed it was a girl two weeks earlier) was pink and moving when she was born but ran into breathing difficulties, we would want them to continue to support her. We both replied, please, please do everything you possibly can to save her. I was then given two injections – half an hour apart to help develop the baby’s lungs when she was born.

At 7.20pm, our beautiful daughter Caroline was born naturally – I was not allowed any pain relief because of her prematurity. They put a little woolly hat on her head to keep her warm. Her skin was so transparent, we could see her ribs and her little heart beating. Most premature babies are born by Caesarean section so the fact that she was born naturally was unusual. I got to give her a little kiss on the head just before she was ventilated.

We were told she had a 9 per cent chance of survival and the next 48-72 hours would be critical. She was born at 23 weeks and four days gestation. She weighed 630g and was six inches long – the length of a Biro.

The next morning, Phillip wheeled me down to the neonatal intensive care unit to see our baby. It was a shock to see how fragile and small she was with all sorts of drips, tubes, lights and machines connected to her.

An ultrasound scan showed that she had two intra-ventricular haemorrhages. She was on high levels of ventilation and was given morphine. Later that day, Caroline’s lungs collapsed and the hospital chaplain arrived to give her a blessing to which we agreed.

The next few days were filled with meeting her neonatal paediatrician, Dr John Murphy, and staff and trying to understand their medical terminology. Caroline’s weight dropped to 500g. Her lungs collapsed twice more and she was administered caffeine to stimulate her brain. She was also given numerous blood transfusions. The duct in her heart was still not closed and we were advised that she might need surgery. Luckily the duct closed a few days later.

Caroline was still very tiny to tolerate food but I was encouraged to breastfeed so that she could be given small amounts of breast milk – initially only half a millilitre every four hours. When she was 15 days old, she opened her eyes for the first time. It was a great sign that she was doing well. Her ears were still not developed and looked like tiny baby cabbages but we really didn’t mind. We watched them grow and unfold.

On June 18th, when she was 24 days old, I was able to hold Caroline for the first time. I felt very scared because she was still hooked up to the ventilator and lots of tubes. I don’t think I moved a muscle in my body the whole 10 minutes I held her for. The next day was Father’s Day and Phillip got to hold her for the first time. She fitted in the palm of her daddy’s hand and her hand fitted around the tip of his little finger.

We spent all our time going in and out of the hospital over the next 10 weeks. She gradually put on weight and was about 900g when she was moved off the ventilator (which did all her breathing for her) and onto the CPAP (continuous positive airway pressure) machine that closely monitors her breathing and takes a breath for her when necessary.

At this stage, we were allowed to change her nappy in the incubator, wash her, help with her feeding and hold her close for short periods. This is called kangaroo care, and gives parents and baby valuable skin-to-skin contact.

July 11th was a landmark day for us because, at 47 days old, Caroline reached her a target weight of 1kg. When babies are this weight, their chances of survival double.

We saw her full face for the first time as the staff took off all the equipment except the feeding tube.

Unfortunately, the next day Caroline became extremely ill with a bacterial infection in her intestines. She looked snow white that day and didn’t move at all. The doctors asked us to put our hands in and talk to her. She felt as cold as a stone. She was put on antibiotics, taken off all feeds, put back on the ventilator and on a drip with nutrients. Her weight dropped dramatically. It was very scary.

Incredibly, she got through it and within seven days she was back on her normal feeds. On July 30th she was transferred from the neonatal ward one to neonatal ward two. She had got nice and big and was one of the biggest babies in the ward but, when she moved, she was one of the smallest again. At this stage, we were able to dress her in micro-premature baby clothes.

August 8th was another significant date because Caroline was given her first bottle. On August 17th, we moved her into a cot for the first time and she continued to progress well. Soon, she was moved to the special care unit (her final stop) where we began dressing her and feeding her regularly like a normal baby.

We asked if there was any chance we could take her home soon and we were told that she was to be discharged a few days later. We went home and cleaned the house in a complete panic. The day before she was discharged Dr Murphy and all the doctors and nurses and care assistants came to say goodbye. We owe so much to them because without all their amazing support and care, Caroline wouldn’t have got to this day. The next day, September 1st – at 100 days old – we brought her home.

It was a reality check for us, with no machines and staff hovering around her. We didn’t sleep for a week we were so busy checking her but Caroline didn’t have any breathing difficulties once she was home. The public health nurse came to see her and weigh her every day for the first 10 days. She wasn’t allowed any other visitors.

Due to her prematurity, Caroline is being assessed and monitored by St Catherine’s Association in Newcastle, Co Wicklow, whose therapists come to our home in Greystones and give her physiotherapy and speech therapy. And there are regular check-ups at the National Maternity Hospital.

Although she is now about 13 months old, she is technically only about eight or nine months. She manoeuvres back and forth but doesn’t crawl yet. She does stand and puts pressure on her feet and she is starting to eat finger food. Each milestone is huge for her but, overall, she’s doing very well and is a happy baby.

We can’t believe she’s got to this stage and that we’ve got through the last year. We really want our story to give hope to other couples who have a premature baby.


In conversation with Sylvia Thompson

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