Our beautiful Sienna’s last moments

Hi everyone, I can’t quite believe we are in this situation and I’m having to do this..

Siennas Story-
We were told throughout the whole of my pregnancy and after she was born we have a perfect healthy little baby. However this was far from the truth, at 3 weeks and 4 days old, she woke up her daddy struggling to breathe, she was then rushed to a&e, turned blue and had to be resuscitated, somehow our little miracle was stabilised. They were unsure what was wrong with her at this point and she was then rushed to Great Ormond Street hospital where we were told ‘she may not make the journey’. Luckily she did and she was diagnosed with HLHS meaning she was born with half a working heart, but due to this going undiagnosed and her body shutting down it didn’t give her the best of chances to survive. We were given the choice of turning off her machines and saying goodbye or the doctors trying a hybrid procedure to try give us some time with her. They were completely unsure how her body was going to cope, after 7 weeks of torture being unsure whether she would even come back home with us, our little miracle made it through and her recovery has been amazing. 
We were waiting on results from an mri to tell us whether she would be able to have anymore surgery as this would have given us a few years with her. But yesterday we were hit with the devastating news that her heart would not be able to cope because of how badly damaged it was due to her shutting down. We knew this could be an outcome and were told she wouldn’t make it past 1 but we weren’t expecting the doctors to tell us we have weeks, possibly only a couple of months left with her. 

We are beyond heartbroken but are trying our best to continue to get up and be strong for her and not wasting any time as it’s so limited. Our ideal last goal for her and our dream is for us to go and have a weekend break away as a family to enjoy, play and let her experience and see as much as she can before she gains her beautiful little wings.  

Anything would be appreciated, even just reading our story and sparing a thought for our brave girl means the world. 
Thank you. 
Kelly x
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Organiser

Kelly High 
Organiser
Norwich, East of England, United Kingdom
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