Luke’s Story

My story begins in January of 2018. After my wife suffered a miscarriage in November 2017, the thought of having another child scared me tremendously, so when in January we found out that we were expecting again, my shattered world was finally healing. As the prospect of becoming a father again really held me together, we went for a "reassurance scan" on the 14th February and everything was perfect.

Our 12 week scan was rapidly approaching and unfortunately, due to recently starting a new position at  work, I was unable to have the day off to go to the scan as I was working out of county. Before I left for work that morning I gave my wife a kiss on the forehead and asked her to let me know how the scan goes. I finished work early that day so had the call with my wife whilst on my way home and I heard those dreaded words for the first time.
"Trisomy 13"
"Trisomy 18"
"Trisomy 21"
That's all I kept thinking of. No longer the prospect of a healthy baby but what could be wrong. This is where my downfall began.

From that day on when I had a moment spare at work or at home I looked up statistics, the possible problems that may come and everything else you could possibly think of when you get told your baby may have these conditions. Although I was preparing myself, I believe I was also setting myself up to fail. My life became what if... not what it is.

Although we already have children we decided to have a scan at 16 weeks to determine what the sex of the baby was.
Both of us sat there eagerly waiting to be told, it's a girl.....

I knew love before, but this time my heart was dancing, the daughter I was wishing for was now only at arms length and would be making her appearance in 20ish weeks time.

Due to the markers they kept picking up at every scan, all we could hear from the consultant was - it's never too late to abort. Both myself and my wife declined many times. Our argument was "what will be, will be", no matter the complication, no matter the disability, this was our daughter and whether she would have a full life or not, we weren’t willing to give that up on a consultants say so.

The night my wife went into labour I remember everything as clear as day. We had arranged to watch the boxing and the running joke became, "What if I went into labour during the fight?" We managed to watch the event with no problems (thank god) but little did we know whilst we slept my wife's waters broke.

In the morning my wife realised that something wasn’t quite right so after a call to the hospital they asked us to go in and be prepared because we may be leaving with a baby.

They did their checks and said that my wife's waters have been broken too long to send her home.... we shall have our baby girl here soon.

24.09.18
Half 6 in the morning we get taken from observation into a delivery suite and within half an hour our daughter was here..
So small, so perfect....

Not breathing.

After 9 painstakingly minutes they were able to resuscitate our daughter, to which she was placed into an incubator and whisked off to neonatal. It took 3 hours before they allowed us to make our proper introduction to our princess.

The day after she was born they did the tests needed to determine what the final diagnosis was, which was full trisomy 18.

After 8/9 days in hospital, provisions were put into place to be able to bring our daughter home where she belonged, as we didn’t feel it was right to send her to a hospice for her life to end.

Day 10 we waved goodbye to the hospital as we brought our daughter home where she belonged, to live the rest of her days with her family, making the most beautiful memories.

Day 16 started off as any day did. Our daughter was fed and her nurses came out to do their checks and they were happy with her as she was making progress. She started gaining weight, after being told she would struggle, our daughter carried on proving them wrong.
Her midday feed did not go to plan, she wouldn’t tolerate it in the slightest, the nurses came back out to us and helped us with her care until the early hours of the morning.

Day 17. Is now the final hours of our daughter's life, we could see the struggle our daughter was in. After a talk, we decided it was in her best interest to have morphine to ease her pain and allow her to slip away peacefully. At 2:25 on the 11th October our daughter took her very last breath in my arms after being told she didn’t need to hold on no more and it was okay to let go.

By far the worst experience of my life, to this day (23.3.20 as I write) I still have nightmares of my daughter's final minutes.
But it is a 17-day period that I would relive time and time again if given the choice.

As I say today is the 23.3.20 and my wife and I are blessed to say we have a 7 month old boy who has filled the void (not replaced Florence). Our 4 year old is absolutely besotted by her baby brother and we are proud to say we have another baby on the way...

As much as our home is full of love, tantrums and stinky nappies, our lives also contain very bitter sweet memories that we will remember with every second we live.

Forever our daughter, forever our warrior

May you rest in peace my princess

Till the day we meet again, my heart is forever yours.

Florence Delilah Daphne Johnston

You'll always remain our one in a million

Forever and always princess

Daddy
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