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Ed, Jacob and Kate's story

29 July 2016

At our 20 week scan the sonographer measuring Jacob wondered if our dates were wrong, as he was quite small. She wasn’t too worried but wanted to get a consultant’s advice. We had another scan two weeks later which didn’t show anything unusual. Jacob was still small, but growing.

But at the next scan things weren’t going according to plan. Jacob’s growth rate had slowed down and we were referred for a consultant appointment. I was a bit apprehensive, but I didn’t think anything was too out of the ordinary.

It wasn’t very good news. Jacob would definitely come early. The consultant thought his slow growth was probably due to difficulties with the placenta and that at some point it would fail. Kate was only 27 weeks pregnant: I thought this would all happen a long way off. The consultant arranged to see us again as he wanted to closely monitor the situation.

Kate went for a routine midwife appointment. I was at work and didn’t have any major concerns. She rang me, which I thought was a bit odd – she told me she had high blood pressure and we needed to go to hospital for tests.

After monitoring, Kate was diagnosed with preeclampsia and was admitted. I was more worried now, although I didn’t know what half the terminology and investigations meant. Not understanding the scale of the situation, I thought Kate would be home in a few days.

She was monitored over the weekend. We saw the consultant again on the Monday and he was surprised things had developed so quickly. We had an amniocentesis to check for any genetic conditions. The results take a few weeks to arrive, and at this point the consultant still thought we had that long to wait.

I went back to work while Kate remained in hospital. Then her condition deteriorated and I had to rush back in case Jacob arrived. Luckily Kate stabilised but as Jacob was predicted to be so small they decided to transfer her to another hospital with a specialist neonatal intensive care unit (NICU). Here they seemed much more relaxed as they were more experienced in dealing with similar situations.

But after another scan it became apparent that the placenta was failing and Jacob needed to come out. Thankfully my work were very supportive throughout, as once again I had to leave work and rush back to hospital.

That evening Kate had a caesarean and Jacob was born weighing 1lb 10oz. For me this was probably the most daunting part of the whole experience. I was surrounded by people rushing around, knowing exactly what they were doing, and I was just sat in the middle. Jacob was born screaming and despite his size he was rather loud! The NICU team stabilised him by putting him into a sandwich bag - it actually had Tesco written across it, which amused me. After five minutes or so I was asked if I wanted to cut the cord. Jacob was then rushed up to NICU.

Jacob at birth in an incubator

Several hours later I was able to visit him on NICU while Kate was still recovering. He was so small and it was quite scary, seeing him hooked up to lots of wires and a ventilator.

Over the weekend Jake stabilised and we decided that I would wait until he came home to use my paternity leave. As we didn’t live near the hospital we were able to use the parents’ accommodation on the NICU. Once discharged from hospital Kate stayed on the unit while I travelled between home, work and the hospital, taking Kate’s clothes home to wash and taking Kate to get food as she could not yet drive.

Jake continued to progress well, but everything still felt surreal as he was so small and in an incubator. I was reluctant to touch or cuddle him for fear of breaking him.

Kate touching her son Jacob in an incubator

After making it out of intensive care and into high dependency, at exactly one month old Jake was deemed strong enough to move back to our local hospital. This made it easier and harder because Kate was back at home but our local hospital is over an hour away from where I work, so it still meant lots of driving! It did feel like a big step in the right direction though. The NICU in our local hospital was a lot smaller but it had a family atmosphere. We got to know many other families and made some good friends.

Kate giving Jacob kangaroo care

After Jake had been there for about five weeks, hospital staff started talking about him coming home and we had some rooming in nights where we stayed at the hospital with him. Jacob would need to come home on oxygen and with a feeding tube. This didn’t seem to faze Kate but I was a bit apprehensive. I found it quite daunting as I hadn’t been helping with most of his care, making it quite a learning curve for me.

Ed holding his son Jacob

Jacob finally came home after 74 days in hospital. We could start to function as a little family. I was pleased that we were home, but this brought its own challenges. Jacob was still being tube fed and I was learning how to help with this, and we were also getting used to using his oxygen equipment. However, we soon got into a routine and settled into family life.

Now Jacob is six months old. He is no longer tube fed and we are gradually reducing his oxygen. He had some difficulties putting on weight but is growing steadily and weighs 8lbs 13oz, nearly the size I was when I was born!

Jacob after returning home

We have had amazing care and support from medical staff throughout, and we are very grateful to all those who have helped us on our journey.

Ed and Jacob on an outing

Being a dad is tiring but also quite good fun. It’s difficult, as I can no longer do all the things I used to do, but when Jacob is playing happily on the floor it makes it all worthwhile. That’s why, this weekend, I will be taking part in Prudential RideLondon to raise money for Bliss – you can watch my video of Jacob’s story and why I’m riding.

If you’d like to find out more about raising money for Bliss by taking part in Prudential RideLondon 2017, please contact Megan.

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages. If you would like to share your story with Bliss, please email media@bliss.org.uk

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