Jenny's story

When I started bleeding at 25 weeks, our world was turned upside down. On 12 December 2013, Jack Lewis Bragg was born by emergency caesarean section weighing 1lb 15ozs.

Jack had to be transferred to another hospital where there was a bed available for him, but we had to stay behind until the following day. We only got to see Jack for a few minutes in the transport incubator.

Looking back I probably appeared quite aloof and distant, but I don’t think I had quite realised the enormity of what had just happened. Little by little it started to sink in, although I think I only slept that night because of the effects of the general anaesthetic.

Seeing Jack for the first time, the first thing I did was laugh, not because the situation was funny, but because he had such enormous hands and feet! It took time to take it all in – the ventilator, the wires, the needles in my son’s tiny body.

We were taken in to a side room to be told that Jack had suffered a brain haemorrhage, the next day it was a pneumothorax (trapped air between the lung and the chest wall) and then on day seven he had a perforated intestine which required surgery at Birmingham Children’s Hospital.

I remember crying for hours whilst he was painstakingly moved in to yet another transport incubator.

Jack had to be transferred again 36 hours later as Jack’s operation had been successful although he now had a stoma (a surgically created opening in the large intestine) in order to give his bowel time to grow and develop. We spent the next few days leading up to Christmas at his bedside just watching the monitors and getting used to looking after our son through the holes in his incubator.

There were good days and bad days, but we slowly got used to the hospital, the nurses and doctors and understanding the many problems that Jack was fighting. We were fortunate enough to be able to have accommodation at the hospital which meant we could get some rest, but still only be minutes away if anything happened.

On Boxing Day I finally got to hold Jack for the first time, two weeks after he was born. It was an amazing feeling but equally scary. Soon after he needed less breathing support, and was put on a system called CPAP.

Things were looking up until Jack got a blood infection and was put back on a ventilator. We took a gigantic leap back in our journey which was heart breaking. His stoma prolapsed and we soon found ourselves back at the Children’s Hospital for emergency surgery. He also required another operation for a heart condition called Patent Ductus Arteriosus. Both operations seemed successful and we started feeding, which was when he really started to pile on the ounces.

Things were going well and someone said the ‘H’ word. On reflection I knew I shouldn’t have got excited, I knew I shouldn’t have started to plan his homecoming, but you do. Then his abdomen started to swell, he got another infection and needed another blood transfusion.

He had to go back to the Children’s Hospital to see if there were any blockages in his bowel which may be causing him problems. After a debate between the surgeons it was decided to take Jack in for surgery.

Jack came home on Wednesday 16 April 2014, weighing 8lbs 4oz, with a stoma, fistula, on oxygen and being tube fed – I think most people thought we were mad but after 18 weeks in hospital all we wanted was to have our baby home. Looking back now I think we were absolutely bonkers, it wasn’t pleasant a lot of the time and everything took so much longer, but we did it.

On 6 June 2014 we were back at the Children’s Hospital for another operation. I think I found that trip to the operating theatre the hardest with him being that bit bigger, and that bit more aware of what was going on.

We haven’t looked back since then. We are still mindful of the impact the brain haemorrhage may have on his development and he’s a little bit behind what he should be doing, but after seven surgeries and a long rocky road we are learning to ‘go with the flow’. He’s no longer on oxygen, but still has Chronic Lung Disease and we need to be careful with him being around too many people.

Throughout this journey, and continuing now, we have been supported by Cheryl Curson, our local Bliss Nurse who at every step of the way was there to give the words of encouragement that we needed. Our families were fantastic but Cheryl had ‘seen it all before’ and could point us in the direction of places where we could find advice, especially when it came to things like weaning!

As a first time Mum I can assume that everything is a bit daunting anyway, but to have a micro-preemie was a whole different ball game.

With the leaflets that Bliss have created especially for families like ours and their on-line forums I could access information specific to what my little boy needed. Cheryl is still at the end of the phone if I need her, and I know that we will continue to stay in touch as Jack grows up.