The Rainbow after the Storm

We had suffered the unimaginable. I will never ever know how we survived Blake, but what I did know was I was in an extremely dark place alongside Graham, my husband, and my mum. I was very concerned about both of them, every minute of every hour. It kept me going in a strange way, I kind of put myself to one side. I suppose this was self preservation at it’s very best.
How does anyone know how they would react to such a horrendous life even? It’s unbearable to even think about it. We live this every single day and will do for the rest of our lives. To this very day, I haven’t fully accepted that our beautiful Blake lost his life and I now know that I never will.
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Blake, born at 30 weeks, in Neonatal Care

Blake suffered from an enlarged heart which took his life aged just 5 months old.
I couldn’t even begin to process what had happened for such a long time. I didn’t return to work for 10 months and couldn’t do so until we had the inquest and learned what had happened to our boy. How does a parent begin to cope with watching their 5 month old baby die in a bay in A&E surrounded by staff trying to keep him alive, battling so hard to save his life, only to watch them fall apart from when he became unresponsive. When I say fall apart, what I mean is they were immensely professional but naturally devastated. I entered a world that I never knew existed, a big black bubble of hell. It’s an indescribable place. I wanted to lie down and die, but I also knew that I didn’t want my son to ever feel responsible for something so harrowing. That may not make any sense to you, but it makes perfect sense to me. The human mind is a complex thing and my mind had convinced me that I had been in an accident, that I was in a coma and all of this was a dream.
I knew in my heart that I wanted to try again for a sibling for Blake, but I couldn’t bare experiencing any more heart break. As we awaited the inquest and I started to make tentative steps in contacting the IVF clinic. We faced a decision of remaining childless on earth or taking the huge risk of trying for another baby. I was determined to get us there, it’s not natural to have empty arms after becoming parents, it’s beyond life changingly painful, so our journey for Flynn started.
Our first IVF cycle was a success, but unfortunately I suffered a
chemical pregnancy and the pregnancy did not continue. Naturally we were devastated and I had to wait a couple of months to try again and a further 2 months of daily injections of fertility drugs. Round two was successful and resulted in a healthy pregnancy!
After a very anxious pregnancy Flynn was born at 32 weeks gestation weighing a tiny but
healthy 3lb 90z.
Flynn NICU

Flynn, born at 32 weeks

History repeated itself in more ways than one. The prematurity, the delivery, the fear for our new born son and the fear of his medical checks. We knew Flynn would be
admitted to NICU, but this time we knew what to expect and we were familiar with the staff and
the journey, which was a huge comfort.
Our NICU journey
The staff on the unit were delighted to see us. They had been aware of what of Blake’s death and they were delighted to see that we had found the strength to have another child. After all, they loved Blake all his life and now they were looking after his sibling, Flynn.

Being born prematurely, Flynn had to endure the same as Blake on NICU. He suffered with jaundice and received phototherapy, he was unable to regulate his temperature so his little home was an incubator and he was cuddled up to IV’s and lines and fed through a through a tube.

Flynn SCBU

Incubators, wires and feeding tubes – starting life in Neonatal Care

Flynn was doing well, but needed time to grow. We didn’t ever get used to having to go home without him every evening. It didn’t feel right, but we knew he was receiving the best care possible and we couldn’t have wished for a better team to care for our precious miracle.
We came to learn early on that there were no obvious medical problems for Flynn. A huge relief beyond words, but it was very hard to process and believe. We’d lost our first son to a heart condition and I couldn’t understand how our second child could be so healthy, it felt too good to be true. We were discharged home from NICU after 4 weeks. Like Blake, Flynn was tiny on discharge, but we felt much more confident with a tiny baby at home the second time round.
Discharge from NICU
On the outside we looked like we were coping so well after what we had been through, but on the inside I was paralysed with fear on a daily basis. Once home we received support from the Neonatal Family Care Specialist Nurse. She knew us well and it was very easy to discuss our fears with her. Things that are normal in babies, just those little things like facial expressions and the fast heart rate etc. had me in a constant state of panic. I knew it was normal but our lives were the polar opposite of ‘normal’ and I just couldn’t relax.
3 months after being home, I was home alone with Flynn and he was sleeping. I looked over at him and he looked extremely pale and his breathing had changed. I panicked, tried to reason with myself but couldn’t. I picked him up, he was floppy. His heart rate was much faster than normal and I just knew something was not right. Graham arrived home from work very quickly and took us to straight to Kings Mill ED.
Immediately on arrival to Kings Mill a nurse came from behind the reception and said
“your baby looks very poorly”. She took us straight through. Nothing could have prepared us for the fact that Flynn was placed in the same bay where Blake died.
Flynn’s heart rate was low and dropped whilst we were there. Once again I was paralysed with fear. Graham was trying his utmost to keep me calm but I just couldn’t see that the outcome of this would be a good one. The doctor came to see Flynn and we were admitted to the Children’s Ward for assessment. My fears should have lessened as we were out of A&E but still I just couldn’t see that we were going to get Flynn home.
He was monitored over a few days, and those few days were horrendous for me. I was absolutely convinced that it was his heart and that he was suffering the same as Blake. Lots and lots of reassurance was given but I just couldn’t accept that it wasn’t his heart.
It turned out that Flynn was suffering with silent reflux and had had an apnoea episode. Following this diagnosis the silent reflux became very evident. Of course there was much relief that it wasn’t heart related but I still couldn’t be convinced or could allow myself to be reassured. Blake had suffered mini heart attacks leading up to his death and all I could think was it was the same.
Flynn continued for the first year of his life to suffer with silent reflux and it was very distressing. Initially there were days that he would scream in pain for 9 hours a day and it took some time to stabilise his suffering, trying different feed options and medications, but we got there in the end.
Flynn and ickle pickle
Flynn is now medication free and those days of seeing him in so much pain are a distant memory but I will never ever forget how very hard those days were. Flynn’s Paediatric Consultant is amazing on so many levels. Having a good Paediatrician behind us has been paramount to our mental health. He is aware of the issues surrounding Blake and has offered so much parental reassurance as and when required. I could never express to him just how much he has made our journey with Flynn much smoother, lighter and less of a worry. We will always be very grateful to him.
Flynn and mum
It’s still hard for me to accept that Flynn is medically well. I still struggle to understand that my first born child died of an enlarged heart and that Flynn has no heart problems. I know he’s a different child but I live on tenterhooks most of the time. I try to keep it hidden as much as possible, but every time we face a simple childhood illness it flares up again.
Flynn toddler

Flynn is a very healthy 30 month old and brings rays of sunshine into our lives. He is a ball of energy and infectiously adorable. He really is an absolute treasure, a miracle. There will always be Blake missing from our lives, every second of every day, but we have learned to carry this the very best we can. We didn’t just lose a child, we lost a baby, a toddler, a teenager and an adult, everything he was going to be. The most heart breaking feeling is that he also lost us and his whole life he fought so hard for.

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Blake home from hospital, precious memories with his mum

Flynn and dad

Flynn, building happy memories with dad

With special thanks to Haley for bravely telling the stories of brothers Blake and Flynn and for sharing with us her heartbreak, joy and ongoing and long lasting worries.
Please help us to SHARE the brothers stories but clicking on the Twitter and Facebook buttons now.
If you have a story of premature birth and neonatal care you’d like to share, please contact Catriona at smalletthings@yahoo.com

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