“Reading about what Bliss were doing for families gave us comfort” - Michelle’s story

Michelle and her husband, Matt, have had two children who needed care in NICU. She says the experience was an emotional rollercoaster that she will never forget.

Our son, Kai, was born at 27 weeks plus 6 days. We don’t know why. I started to get pains on 23rd January 2010, although my due date wasn’t until 19th April, so we were very worried. We decided to ring the midwife for advice, and with me having a history of premature labour, she sent me to the hospital. This was at 12.30pm. Once at the hospital, it was obvious things were starting and this was very scary. The hospital staff were great at trying to keep me calm, all the right people were sent in to talk to me about what could happen, and percentages were thrown at me about survival rates, it was very emotional and very difficult to take in.

Kai was born at 8.30pm weighing 2lb 2oz. I was told this was a good weight for his gestation. He didn’t cry for what seemed like a lifetime, but was probably only a few seconds, they held him up to show him to us, but then he was taken away to the NICU. I didn’t see him again for 24 hours, he was on a ventilator, I only saw a picture (sometimes I’m glad I didn’t actually see him like that).

I always remember a nurse coming into my room and I thought this is it, she’s going to tell me he’s gone, but she didn’t, she said he had spat the ventilator out and he was breathing on his own. They always made sure I didn’t get my hopes up though and said we had a long road ahead.

Kai did really well, although we had a few setbacks where he had a few infections and had to have antibiotics, luckily there was nothing majorly wrong with him.

NICU was such an emotional rollercoaster. We wanted to be with Kai all the time, but we had a five-year-old at home who also needed us and she was having a hard time understanding why her baby brother wasn’t coming home. We dreaded phone calls and also dreaded walking through those doors on the unit each time fearing what we might be told.

Kai spent three months on the unit with a lot of time on oxygen via CPAP. He had problems keeping his temperature, but when the nurses said we could take him home and that we didn’t have to bring him home on oxygen, this was really good news. That moment was the best day but also very nerve wracking as you grow used to every beep of the machines. Learning what they mean in a lot of ways gives you comfort, but at home you haven’t got that, you’re on your own.

Having a premature baby doesn’t end when you bring them home from the hospital. The journey just begins with countless hospital appointments and hurdles to overcome. Kai was admitted to hospital twice after his stay on NICU. Once with an infection and then another time with pneumonia.

He had to have physio every week for a while as he didn’t meet his milestones of rolling over and holding his head up. But I am glad to say he is a happy healthy 11-year-old now who loves chocolate biscuits a little bit too much!

We will never be able to repay Derby NICU for what they did for us in every way possible. They were great not just with Kai but also with our daughter Kasey who was also born early at 31 weeks and spent a month on NICU. She luckily didn’t need oxygen or experience any major problems. She weighed 3lb at birth so she needed help gaining weight before being allowed home. Again, this was a very emotional time. But Kasey is now 16 and has just left school, started a job and is waiting to start college.

Our time on NICU is something we will never forget and will never really get over either. We know we are one of the lucky ones who got to take Kasey and Kai home.

We went on to have another child, Daisy, who actually managed to go full term and reached 37 weeks. The pregnancy was hard, with numerous scans, making sure everything was ok. The care I received due to having two previous premature babies was amazing. Daisy weighed 5lb 3 oz and has never had any problems, although psychologically it was hard for me, as I’d never brought a baby straight home. Before, I needed the machines and the nurses, but I was on my own this time, constantly checking temperatures and watching her breathing. I was paranoid that something bad was going to happen, but now she is a happy healthy four-year-old who is due to start school in September, full of sass.

The first time we spent on NICU with our first daughter, Kasey, we weren’t aware of Bliss at all. We always had support when we needed it, but when we had our dark moments, we also felt helpless, (and there were a lot of these moments).

We had seen some leaflets dotted about on the unit whilst there the second time with Kai, but we were never really told what Bliss was and didn’t know about the information and support they provide to families in similar situations to ours. It wasn’t until after Kai had been discharged that we started to research Bliss a bit more, as this was when it hit us that we were now on our own. We had friends and family to support us, but sometimes they didn’t realise the silly things they would say, or the way we did certain things, or why we would worry about things that apparently, we shouldn’t worry about. It wasn’t their fault, but they just didn’t understand.

Seeing the stories and reading about what Bliss were doing for the families of premature and sick babies gave us comfort. Each NICU experience is different, and everyone has a different journey. Our journey could have been so much worse which is why we feel Bliss is an amazing charity to support.

We are so glad and grateful that Keltruck, a company who my husband works for, has chosen to donate £5,000 to Bliss. We hope this donation goes to help lots of babies and families like us. The support we were able to receive from the nurses who helped us through the most testing times in our lives was amazing, and we will be forever grateful to them and to Bliss.