Leo George Lewis

The last post I published was a tour of the beautiful nursery we designed for the impending arrival of our first born but sadly, his life story doesn’t have a happy ending.

Leo George Lewis, our beautiful baby boy, arrived into the world in the early hours of Sunday morning, 6th January 2019, filling our lives with unimaginable joy - a perfect little bundle of love. The morning before I’d been out on the boat, towing my husband and friends around on wakeboards and enjoying a regular morning in paradise. I was having mild contractions and casually told Rich “I think we’re having this baby today” and sure enough that afternoon I was admitted to the maternity ward of George Town hospital.

After an easy breezy pregnancy and a reasonably quick and straightforward labour, we met our son and felt like all of our Christmases had come at once - overwhelmed with pride and joy.

What followed were 24 hours of blissful parenthood - Rich went out to wet the babies head as I enjoyed cuddles with our snuggly newborn, before it started to became apparent that Leo was not a “normal” baby. Multiple (amazing) doctors came to asses him as the midwives started to grow increasingly concerned about the fact that he wasn’t feeding - and then all of a sudden we were told that he was being admitted to NICU. At that moment the world flipped upside down and Leo was taken from my bedside into intensive care on what was the loneliest and most terrifying night of our lives, the second night of his.

By the next day things had gotten worse and we were medi-evac’d to Miami where he was admitted to the Nicklaus children’s hospital and cared for by a team of the words finest experts in children’s medicine.

Nicklaus children hospital Miami NKH

48 hours of tests and assessments by a myriad of genius consultants led to us receiving the devastating diagnosis that Leo had NKH, a rare and severe genetic metabolic disorder which is terminal and often leads to death in the neonatal period. An MRI showed almost a complete lack of Corpus Collasum (left-right side connector) in the brain and the doctors told us that there was no hope for our little boy. Our little fighter held on for long enough to meet his family and fill us with love, before passing peacefully in our arms on Monday 14th January.

You can read the full story of his life here.

Since then we’ve been trying to honour Leo’s life by remembering the lessons of strength, courage and love that he taught us in his short life. We’ve been trying to survive each day by seeing the blessings that we still have in our lives, and celebrate the memories we made with our incredible son. As we’ve muddled through the grief and loss, I’ve been sharing my thoughts on Instagram and recording them in a notebook which I’ve now decided to share as part of this blog. It will still remain a place where I share bits about our expat life in paradise, our home, as well as our travels and adventures around the world - but it’s also now a place to talk about Leo and our journey through a different type of parenthood.

I recently finished Elle Wright’s book about baby loss and like her, I don’t want to separate my day to day life and my life as a mother just because my baby isn’t alive. If he’d lived and we’d taken him home, Leo would have featured on this blog and filled my instagram squares and just because he’s not physically with us, he is part of our life so there’s no reason for him not to be part of them. I want to acknowledge the journey that our family is on and I’m not going to hide the fact that I’m a grieving Mum but that doesn’t mean I’m a miserable so and so and this blog is going to be full of doom and gloom from now on! Quite the opposite - I’ve always loved writing and I want this to be a place where I can be honest about my feelings, maybe help others going through a rough patch, and celebrate the awesome things in life too - including Leo’s legacy.

I’ve always wanted this blog to be a source of inspiration and so many people have reached out to tell me that my instagram posts have helped them with their suffering, so this blog will be an extension of those posts and even if I only reach one person, I’ll have done my baby proud. Leo is a new source of inspiration in our lives as we try to figure out what’s next for our family and plan more adventures and travels, and I hope he can inspire yours.

So here’s to Leo and our journey - it’s really only just begun.

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