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Louise and Blake's story

21 October 2016

My pregnancy with Blake was pretty straightforward although I was told that he would arrive between 34 and 37 weeks. I had a bicornuate uterus and my previous children were born at 37 and 35 weeks.

On Saturday 1 August, 30 weeks pregnant, I was bleeding slightly. I rang maternity who asked me to come in. By then I was bleeding a little more but they put me on the monitor and Blake was happily moving around. The doctor examined me and couldn't work out why I was bleeding so they kept me in.

The bleeding got worse. My husband left to look after our other children, when I noticed the bleeding had become watery. The doctor confirmed my waters were leaking. I was put on strict bed rest and back on the monitor. But within ten minutes my waters broke, covered in blood. The doctor took one look and said he was delivering my baby in the next 45 minutes by emergency c-section.

I was so scared. It was so early. I just kept thinking “would he be ok?” Would he be breathing? I rang my husband and couldn't hold the tears back. One of the midwives gave me a hug. I was taken to theatre – my husband got there just in time.

Blake was born at 6.24pm weighing 3lb 6oz. He let out an almighty cry. The doctor said this was a very good sign. I cried. Then he stopped breathing and needed cardiopulmonary resuscitation (CPR) for seven minutes.



Once he was breathing again I could give him a kiss on his head. I was instantly in love – my tiny baby was perfect.

When he was taken away to NICU, I couldn't hold back the tears. How was this fair? This wasn't how it was supposed to be. No parent should be away from their new born, losing those precious moments everyone should have to bond.

Out from theatre I just wanted to see my baby but had to wait until I got the feeling back in my legs. The NICU nurse said he was doing very well, but needed a little help with his breathing.

When I was taken to see him, I was scared – all these wires attached to him! I think the nurse saw the fear in my eyes. She sat and explained what they were for. Then she said the words I’d been waiting to hear. "Would you like a cuddle?" I nearly bit her hand off!

Our first kangaroo cuddle was amazing – feeling him next to my skin, feeling his breath with that amazing baby smell. I could’ve sat there all day.

The next day he was moved from intensive care to high dependency. He was pretty much breathing by himself. I was with him as often as I could, in between resting. He got bigger and stronger, although he had high calcium levels. They discovered he had a heart murmur, and a heart scan revealed he has pulmonary stenosis.

By Week Five he was due to come home on the tube feeding programme – alternate tube and bottle feeds. I was all set, the crib was built, the car seat ready and we were so excited. We were trained on CPR, as premature babies are more prone to stop breathing. I gave him a kiss and said "We’ll see you tomorrow, when we can bring you home".

Then I got a phone call at 9pm saying he’d had a large vomit, had stopped breathing and needed to be resuscitated. He was back on oxygen and in high dependency. So upset, I raced to the hospital, took one look at him and burst into tears.

Thankfully, the next day he was back off oxygen and breathing for himself. Lots of tests all came back clear, and three days later we brought Blake home with his feeding tube in. We were so happy. We could finally be a family and put the nightmare behind us.

Three days later he woke up sounding very chesty so I rang my doctor. They told us to come down. As we waited he was wriggling around and seemed fine, but then I looked down. He was blue and not breathing. I remember shouting at the doctor for help. Suddenly there were three doctors all helping him. The receptionist took me into another room. After what felt like forever the doctor came and said “We have a crying baby!” I've never been so happy to see him crying.

We were rushed to A&E, where loads of doctors asked lots of questions. Blake was put on oxygen and taken to the high dependency unit (HDU). More tests. During a lumber puncture to check for meningitis he stopped breathing again. It was awful watching him being resuscitated.

He was weaned off his feeding tube as they didn't want to take any risks. He was in hospital for two weeks – after lots of tests it was all put down to reflux. He was given reflux meds and came home.

Blake did really well until February, when he ended up back in hospital on oxygen and a feeding tube. They thought he had bronchiolitis but after a few days a test for flu came back positive. On day five he had a temperature, went all grey and needed 80 per cent oxygen on optiflow. In HDU he was put on the highest oxygen possible. We were told if he got any worse he would have to go into intensive care and onto a ventilator. Thankfully it didn't come to that but he spent another two weeks in hospital.

Since then Blake's been in hospital every few weeks due to breathing problems. They suspect he may have an unsafe swallow – if a moving X-ray confirms this they can decide whether he needs medication or tube feeding. A cardiologist is also monitoring his heart condition.

He is now doing well and he loves his food. He's rolling and trying to crawl. It’s all been really tough but seeing the big smile on his face every day makes it all worthwhile.

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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