If it was not for The Sick Children’s Trust, we wouldn’t have managed to be by our little man

Albie was born on 31st May 2016 at just 26 weeks + 2 days. He weighed 2lb 1oz which, considering how early he came, was a strong weight! He was born in Colchester Hospital but he was taken straight away from us – we didn’t even manage to get a cuddle. It wasn’t until he was five hours old that we got to meet our son. Although it broke our hearts we knew it was because the neonatal team were working so hard to give our little man the best fighting chance…so he could be transferred to The Rosie Hospital in Cambridge for lifesaving treatment.

Albie made it to Cambridge with no major problems, but he was so fragile. He was intubated to help him breathe and as the days went by, we watched our tiny son fight for every single breath – and we had no idea just how much he needed to fight. When Albie was just a few days old, we really thought we were going to lose him. It seemed like he was getting better, so much so that the doctors decided he was ready to be extubated and put on a ventilator. But Albie stopped breathing, and Michala and I were there watching the nightmare unfold right in front of our eyes.

This wouldn’t be the last time we saw this happen. Albie stopped breathing suddenly a lot… and as any parent with a seriously ill child in hospital will know, the sound of the emergency call is the worst. Everything can be all calm and cool one minute then all of a sudden machines start bleeping, the emergency call goes and the next thing you know the incubator lid is up and an influx of doctors and nurses come running through the door. Thankfully though, half the time this happened, Albie would just open his eyes look around and start breathing again.

The days and weeks went by and things were starting to look on the up. Albie was still having lots of medication and tests being done, so many that we actually began to lose track of time. But despite being in hospital, we had a ‘Home from Home’ as we were provided wonderful free accommodation by the lovely people at The Sick Children’s Trust, which helped us so very much. If it was not for them we wouldn’t have managed to be by our little man. Thanks to The Sick Children's Trust though, we were just minutes from his side.

Time went on and one day we started to notice things were not right with Albie. His temperature was very low, his oxygen requirements went up drastically and it ended up with the decision ventilate our son. We went in for a chat with the doctor who specialises in babies’ lungs and he told us that Albie had chronic lung disease due to being born prematurely. He explained all about it, but we needed to know whether our son would pull through. The scariest moment of our whole journey was when the doctor replied that he didn’t know if he would.

Every day we woke up not knowing what the day ahead would bring. Having the support of The Sick Children’s Trust helped us enormously with coping with the uncertainty. We were staying just minutes from Albie’s side in the charity’s ‘Home from Home’ Chestnut House and without this place; we would not have coped physically, emotionally or financially.

Albie continued to deteriorate and his oxygen requirements were increasing constantly. He was even put on steroids to help his lungs become stronger but he didn’t get better. It was once they decided to change the ventilator to a different machine called an oscillator that after two days we began to see him change. We couldn't believe it. We thought our son was dying, living the last few days of his life but then he fought just a little bit harder and finally everything was heading back in the right direction.

Because Albie was so ill, it wasn’t possible for us to sleep by his bedside, so we really don’t know what we would have done. We were so far away from home and couldn’t have funded a place to stay for over two months. It wouldn’t have been manageable.

After a very rough nine weeks in Cambridge, our little monkey had worked and fought so hard and he was weaned down on his oxygen. He had been on the radar to be transferred back to Colchester for a couple weeks. And when the day finally arrived, it was the best – we were told in the morning they were ready to transfer Albie back and within a couple of hours Albie was on the road heading back to where he started his journey. And he was reunited with the doctor that resuscitated him at birth.

Leaving Chestnut House was a big step for us, we were so happy to making our way home, but sad to leave the fantastic team at Chestnut House – everyone from the house manager to the cleaner cared about Albie. They would always be there to listen and to talk.

We spent four weeks at Colchester in the NICU, but generally he was constantly improving. At Colchester, we started talking about the day we had been waiting for – bringing our baby home. Then that was it. We were packing up and setting off home.

Taking Albie out of the hospital grounds was terrifying, but as soon as we got him home it just felt natural. It was a bit hard and stressful getting used to wires everywhere but that didn't take long

Albie has just turned seven months old and weighs over 16lbs which is something we never thought would happen. His oxygen is on the lowest flow rate it could be and he has started to do periods of time off oxygen as well.

We couldn't thank everyone who has helped on this rollercoaster of a journey enough. So many people have helped to give us our baby boy and we are forever grateful to you all!