Jen & Stuarts story (Robbie’s mum& dad)

Robbie was born at St Mary’s hospital, at 23+2 days on the 28th April 2016, he weighed 1lb 5oz.  He was taken to the NICU straight away and put on a ventilator within six minutes of being born. This was the beginning of an unforgettable 10 month journey.

Every week there would be a different priority.  First it was reducing the ventilator settings which took two months to eventually get him off after three courses of steroids, then it switched to his eyes or heart then back to lungs. Infections, immunisations, blood transfusions.  All these things were a setback. Having a child in NICU is like being on a permanent rollercoaster of emotions – you can take one step forward and then three steps back. Things you expect to do naturally with a baby become big milestones for you, every ml of milk and every gram gained was a step in the right direction. Bonding with Robbie was a milestone in itself – I was too scared to form a bond in case I had to say goodbye. I was in shock and found it so hard to even talk to him. Most parents cuddle their child in the first few minutes after they are born – I had to wait two weeks before I could give my son his first cuddle.  Robbie’s eyes were fused shut when he was born.  It was nearly three weeks before he opened his eyes and could see me, but I can’t put into words how rewarding and exciting each of these little milestones felt to us. The first hours and days are crucial.  You do your best to rest and you begin to build trust in the people who are caring for your child.  These days merge into one, you live in a constant bubble and it’s almost as if you feel safe. Nothing that happens in the outside world matters anymore.

It became a bit like a job I would be on the unit for 9am caring for Robbie, dressing him and bathing him, play time with him, toys, stories or music including physio. I made friends with the nurses and other parents, so would chat to them all the time. I would nip out for some lunch and then be back with Robbie till dad arrived back from his work at 6pm.   We would spend time together as family and then Dad and I would head to the pub or go back to Ronald Mcdonald and watch a film – this was our new life but we always knew it wouldn’t be forever.

After 245 days on NICU, Robbie left Saint Mary’s and was moved next door to Ward 85 at Royal Manchester Children’s Hospital. Here we got even more confident and prepped for taking him home.  But as usual there was still ups and downs.  After 307 days Robbie was finally discharged on the 28th February 2017. He came home on oxygen but every month we have been able to wean him and as we wait for an operation to fit a gastrostomy he is fed by a tube but we are making slow progress weaning him into solids. The hole in his heart has closed, the bleed on his brain has gone and he wears glasses now. Who knows what other challenges he will face as he gets older but we know we will always have great support from the hospital.

Life won’t ever be what some people would say is normal as he will be closely monitored by specialists till he’s at least 2 but the main thing is that Mummy, Daddy, Big Brother and Robbie are finally home together as a family.