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Florence Delilah Daphne Johnston

24.09.2018 4lb 110z 07:02am - 11.10.2018 4lb 6oz 02:25am
During a very difficult pregnancy, doctors wanted to do multiple invasive testing as Florence had suspected high risk trisomy problems. They advised us to medically terminate but as parents we decided against this. Florence had many markers for T18 throughout her pregnancy which consisted of - Choroid Plexus Cysts, Nuchal fold thickness, clenched fists and prominent heels and also was surrounded by Polyhydramnios which is very common for a mother to have when carrying a Trisomy baby. 

At 38 weeks 3 days our beautiful little girl came into this world after a 29 hour labour naturally at 7.02am weighing just 4lb 11oz. When Florence was born it took just nine minutes to resuscitate her which seemed like a nine hour wait where everything stood so still. She was put on CPAP to help her with a journey that had only just begun. We had our first cuddle before she was taken to neonatal for where life would lead to where she destined to be. Over three hours later we was able to go and see Florence on the Neonatal ward where we met some of the most beautiful doctors and nurses that cared for 10 day stay in hospital. Within 24 hours doctors confirmed our little girl had very complex "life limiting" Trisomy problem called Edwards Syndrome, we felt very numb and completely torn apart knowing we had just welcomed our little girl and would one day have to say goodbye to a much loved Daughter, Sister, Granddaughter, Great-granddaughter, and Niece.

Within 48 hours our little girl fought so hard and came off her CPAP being weaned onto Opti flow and all forms of oxygen and managed to breathe alone and only needed help for feeds 2 hourly via her NG tube. Florence also had been diagnosed AVSD Heart alongside other abnormalities with her heart but little did we know at this moment in time it was something much more significant than this.

Our hours turned into days, and what was days felt like a lifetime. Being in a neonatal ward with a poorly baby is a world of its own time stands so still and the sounds of the constant machines while the whole world outside still goes by.

We had many extensive meetings with the Neonatal team, and were overwhelmed by so many professionals that advised us that it would be a good idea to take Florence to a hospice where she would be on end of life care. As parents already of a beautiful 2.5 year old daughter who is now 3 at home we wanted to take Florence home to make the most beautiful memories with her sister and have time as a family where we now hold our ever lasting memories deep within our hearts.

When Florence was 10 days old we were finally discharged and able to put Florence in her car seat for the very first time and bring her home to her sister and where she belonged. Prior to our discharge we learned Basic life support and how to feed via a NG Tube to enable us to give Florence the 24-7 care she needed ourselves. We had some remarkable community nurses who stayed with us when ever we needed them from discharge up until Florence passed away. These Nurses worked so very closely with us and made the 7 days Florence spent at home the most love filled days we could have asked for, and each and every day since we will always be great full for just how much the WHOLE team became our super hero's.

Two days after Florence arrived home, she took a complete unexpected turn and had a sleep Apnoea where she completely slipped away for 45 minutes and went so very pale white.      

We thought she was gone...

Florence pulled out of this and managed to come back around after CPR and oxygen and we cuddled our baby endlessly and continued to make memoires as a beautiful family of four.

Day 16 .. Like any other family day we woke up, got the family ready for the day. Had breakfast and all our flying nurse and health visitor visits, After loosing some birth weight Florence was finally putting weight back on we were so chuffed and super proud! Come 12.15 Noon it was feeding time for Florence and the normal nappy change and feed time began. During Florence's feed little did we know things were going to take a very drastic turn for the worse. She began to turn very blue during her feed so this was immediately stopped. Her oxygen levels began to drop and we knew it was her telling us that it was time to go, HOW COULD THIS BE?!

For the next 14.5 hours Florence had multiple apnoea's where her saturation levels would drop and she would turn a very dusky colour and became significantly distressed. We gave our nearest and dearest the last call to come and see Florence before she went as we knew in our hearts this was goodbye. Once Florence had seen everyone who was most important by 02.25am she took her final breath in her daddy's arms with mummy right beside after a brief whisper in her ear it was okay to let go she didn't need to fight anymore.


Florence's dad Luke has shared his story with us from a Dad's perspective, you can read it on our Support For Dads page. 




Created: 28/02/2019 21:51

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