A beautiful beginning, my heartbreaking story after premature birth

Graham and I were in Warwick for the weekend when I went into labour with Blake. At 30 weeks gestation I put the labour pains down to all sorts of other possible reasons as I didn’t once consider I was in labour. Graham had started to time my pains and quite soon on they were 10 minutes apart. We contacted the maternity unit and was told to go home and take paracetamol, but something was telling me to go straight to the hospital. I was frightened that something was wrong. We started our journey to Kings Mill Hospital in Nottinghamshire, we didn’t want to be out of area if we were to admitted to hospital. Contractions were becoming more frequent and so was the panic and concern for our unborn child.
Once at the maternity unit, I was put on the CTG monitor and tested for infections. An hour into being on the maternity ward my waters broke and our beautiful, tiny baby boy Blake was born two hours later.

The neonatal team were on standby whilst Blake was delivered and they took over in a way that calmed me. I could immediately see that Blake was in the hands of experts. I will always remember the doctor that took Blake and placed him in the incubator, he was so calm and collected in the chaos of the situation.

We were in total and utter shock, I had never known anyone to have a premature baby and I just didn’t know what to expect. My first feelings were ‘how can our baby survive being born at 30 weeks and what will he have to go through? All of this was very new to us and we just couldn’t comprehend what we were about to face.

Blake was cared for in neonatal intensive care for 6 weeks in total.
We were terrified, in shock and delighted that our son was safe and that we could see him…. but could also foresee he had a long road ahead of him.

I had been in theatre after giving birth to Blake and had an epidural which meant that I couldn’t see him for the first 6 hours. I could only see my new born son in the pictures that Graham had taken on his phone. I couldn’t wait to meet Blake and the staff who I would spend every day with for the next 6 weeks. On entering the ward to meet Blake for the 2nd time I was going through an array of emotions and one of the nurses said to me “congratulations”. It took me back a bit as it was like the focus was on the negatives at this point and just by her saying that to me put a huge smile on my face.

Blake appeared to look quite a size on the pictures for a 2lb 7oz baby, but nothing could prepare me for how tiny and vulnerable he was.

Feelings of guilt soon set in. I felt let down by my own body, I wondered if it was age related (36), I thought of all possibilities, I just couldn’t understand why this had happened.

I had to inform my employer and colleagues that my maternity leave had started approximately 8 weeks early. They were still working on sorting a secondment to cover my maternity leave and my department was already under immense pressure with a heavy work load. Although otherwise engaged I was concerned for them. They were amazing and very supportive, and of course they were concerned about Blake and what progress he would make. It’s easy to detect what is at the back of people’s minds ‘will he survive being born so early?’. It’s a question I asked myself constantly. I of course didn’t know the answer to this, nor was I qualified to fully understand what he may face medically.

It was soon revealed that Blake had a ventricular septal defect (VSD), a hole in the heart. It is a common heart defect that’s present at birth (congenital). After further tests the Cardiologist was happy that Blake wouldn’t need any intervention until nursery age.

The medical staff were simply amazing, nothing was too much trouble for them. Always more than willing to explain things to us and answer any questions and concerns we raised. Blake’s Consultant sat with us at length to explain Blake’s heart condition.

The Consultants without doubt are extremely busy, yet we never felt rushed by them. I always describe the nursing and medical staff as “angels without wings”. They are special and I admire them and what they do very much. They are on the edge of life and death every day and they also have worried parents to look after.

As we watched Blake experience bradycardia’s, tube feeding, jaundice, living in an incubator unable to regulate his own body temperature, surrounded by machines and wires the one thing that always struck me was the amazing staff and how they are just like a family. At such a distressing time the staff made our journey much more bearable.

Parents can be very hands on in NICU. You do cares, tube feeds, bathing and as much cuddling as the staff will allow. I was always terrified as Blake was so tiny, but you receive constant support.

We stayed with Blake in NICU approximately 16 hours a day and only went home to sleep. The hardest part for us was always going home. Of course parents are encouraged to go home and rest, but it’s so hard to do. I was expressing milk at 3am, ready to take in with me the next day. It felt so unfair, it was so unnatural to be away from your precious baby.

Graham returned to work after 2 weeks and it was such a difficult time. Graham is a diamond, an amazing dad and extremely supportive. His absence was felt and I just couldn’t wait to see him back on the unit at the end of his working day. His big beaming smile when he arrived on NICU was always very heart-warming. I don’t know how I would have survived this without Graham and my mum, they were my rocks. My mum and her partner Steve were always there for us and helped us in so many ways.

From Blake being delivered to being discharged, our journey on NICU was a huge emotional rollercoaster, but also an incredible experience and we were blessed to have such a beautiful and strong little soldier.

The NICU journey is very hard to imagine and understand unless you have experienced it. It changes you. It makes you realise how fragile life can be. It puts you on the edge of your nerves every day and when you get the news that you can take your baby home along comes more feelings of delight mixed with terror. NICU had been a safety net for so long, it was hard to imagine being without the experts and caring for our tiny baby at home.

On discharge Blake weighed just under 5 pounds. The main part of my fear was the size of Blake, he was so tiny, so fragile and vulnerable. I couldn’t even imagine him in a car seat, I could hardly breathe on our way home, I was so scared.

Unfortunately my story has an extremely sad ending, but in part 2 you will get to hear about our rainbow after the storm.

Sadly, Blake died at 5 months old. He had an enlarged heart, which wasn’t revealed until we had the inquest 10 months later. It’s a very long and complex story, but our rainbow baby, Flynn, is now 30 months old and thriving. Both our boys were conceived via the wonderful science of IVF so after losing Blake and deciding to try for another pregnancy we knew we would have to face another uncertain battle. There’d be more heartbreak. Flynn was born at 32 weeks…

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