Wednesday, 25 July 2018

#StillOurBaby Carys.

Another beautiful #StillOurBaby story, from the lovely Megan and her precious little girl Carys. Megan discusses life in NICU and parenting after neonatal loss. An incredibly inspiring story.

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A special thank you to Katie for letting me share Carys’ story. 
My name is Megan, and I am the mum of Carys, our little Sleeping Beauty.
I found out I was pregnant back in 2015, totally unplanned and thrown into a world of decisions and life changes I was in no way prepared for. It was terrifying, but the moment I saw that tiny being growing inside me on the 12 week scan, nothing else mattered. I was going to protect that little human from all the bad things this world threw our way, and I was going to love them more than anything else. The pregnancy went pretty smoothly; the 20 week scan came around fairly quickly and we were both over the moon when the sonographer scanning me said that our little girl was healthy and doing well. I excitedly told family and friends that I was expecting a girl and started to plan properly for this new exciting adventure. However, this normal, ‘easy’ pregnancy all ended very abruptly on the 5thOctober 2015. Her movements had reduced, and they weren’t as strong, and I started to question if something wasn’t quite right. So, on my lunch break from work, a friend drove me to the hospital to get checked over. Little did we know that we wouldn’t be going back to work after lunch, and I was about to give birth, 13 weeks early. Within an hour or so of being at the hospital, we were rushed into surgery, and she was born. 
Carys Aurora Greasley, was born at 15:16 on the 5thOctober 2015, weighing a tiny 1lb 3oz. She didn’t cry, she struggled to breathe alone, but she was alive. They let me see her briefly before they took her up to the neonatal unit, and I just couldn’t quite believe that I had made her, she was so perfect and tiny. Later that evening, when I was in slightly less shock and had told my family we were both okay, Carys’ dad (Patrick) and I were both taken to meet our little love properly for the first time, and it was without a doubt one of the best moments of our story. She was covered in tubes, and wires and monitors, but she wriggled around with her little pink hat on, fist pumping the air and showing us both that she wasn’t giving up without a fight. The consultants were honest with us at this point, she was so much smaller than she should have been for 27 weeks and had obviously been struggling for a couple of weeks inside me, so the first 48 hours were touch and go. But she battled on. 
She overcame so many obstacles, defied all the odds week after week, and slowly started to grow and develop. Her personality shone through in every aspect of what she did, and I questioned on a daily basis how we had managed to make such an incredibly strong and brave human being. She was doing so well that she moved hospital to ensure we were closer to family. She moved out of intensive care, and there was even talk about the prospect of finally taking her home with me. 


On the 29thNovember 2015 though, our world was turned upside down once more. The hospital called to say Carys had taken a turn for the worse overnight, and they believed she had developed Necrotising enterocolitis (NEC). I rushed to the hospital, feeling unimaginable guilt that I wasn’t there to hold her hand, watched as they prepped her for surgery, and watched as a crash team tried to save her. I couldn’t leave her, so I stood helplessly around a group of medics who frantically ran around trying to keep my tiny little 2lb baby alive. We held her as her heart took its final beats and prayed this wasn’t happening to us. We spent the rest of the day with her, had our only family photos as a family of three, and had close family come to support us. Then we left the hospital, with the boxes of her things, knowing we wouldn’t be returning the next day to see her bright blue eyes staring back at us from the incubator. 

Fast forward to now, and we are just over two and half years from that day. Memories of her scent, of her beautiful face, of her personality are captured in limited photos, and items of hers that are stored in a memory box, but most importantly in our minds. I am ashamed to say those memories aren’t as clear as they used to be, that I can’t remember the wrinkles on her forehead in as much detail as I could back then, but I guess that is the reality of time, memories always fade despite our best efforts to save them. I dream about her daily. I dream about the life I could have had with her, about the family we could have been. The waves of grief still hit me hard, and I can whole heartedly say that I will miss her till the end of time. 
Parenting a child that I no longer hold in my arms has been far from easy, but I imagine that she would have kept me on my toes if she had lived too. I have tried hard to keep her memory alive over the last few years, and we will continue to do this forever. We have raised money in her memory for Bliss and Sands, two charities that were incredible to us throughout Carys’ life on the neonatal unit, and in her passing. We held a charity event for her first birthday, held bake sales, have taken her on adventures, and Patrick has even run 8 half marathons in the last year to represent the 8 amazing weeks we had with her (actually 9 now, and he has the running bug too so there will be a lot more runs in her memory I imagine!). 


She helped me find my passion in clinical research, and I decided to carry out an MSc in her honour, dedicating my dissertation to her. I hope one day I can continue the research further. I hope one day that Carys' legacy will be the reason that care for infants at risk of NEC improves. It never quite seems enough though, I always feel like I am not doing enough for her, that she deserves more from me. I have felt immense pride, joy and love since Carys was born. She showed me what it feels like to love someone unconditionally, and it is a love stronger than I can ever explain. She showed me strength, bravery, and determination, and because of her I still wake up every day and survive.
I was told at the start of this journey that things would get easier, that over time that gut-wrenching pain would soften, and in some ways, it has. But there will forever be those days when we both sit there and question why. Grief still knocks us back, possibly catching us more off guard than in those earlier days. The reality of baby loss really is lifelong. We obviously miss those moments we physically shared with her, but my god do we miss the moments that we didn’t. The first walk, the first word, the first day at school, the graduations, the future - that’s our reality now, a lifetime of what ifs. 


Grief is forever a part of us now, just like Carys is. They will forever shape our lives, and she will forever be on our minds. Our little Briar Rose, our Sleeping Beauty for always. 
To see more of Carys' story and adventures:
IG: @CarysAurora
FB:@CarysAurora
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Thank you Megan, for sharing your beautiful Carys with us, such a special little girl. 

If you'd like to be a part of the #StillOurBaby series please contact me. 

Katie xx

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