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One special cuddle

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  As I sit here, about to write this article, I have become overwhelmed with emotion looking at this photo. Evelyn is so incredibly poorly by this time, I willed myself to believe we had a future, that there was hope. I am forever grateful to Laurin for making this day happen. As I mentioned previously, when a baby is intubated, you cannot cuddle them, unless under strict and careful supervision. Laurin and I planned the day so that I could have her out, this is one of the photos taken of that moment. I can't remember how long I managed to have her out for; it was several hours though. The thing is, time stopped still for me that afternoon.  It had been 2 weeks since I had held her close to me. That had felt like a lifetime. We were back together, as we always had been, Evelyn and me against the world. I was fully present in that moment, I don't remember worrying about when it would end, I just soaked up every second of her. Her skin was so soft, she smelled so beautifully, I ...
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6 years

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My beautiful Evelyn, Tomorrow is your 6th birthday.  How has it been 6 years?  We should be preparing for a 6th birthday party, instead Mummy, Daddy and Buster will walk up to church, to the place where your ashes are buried. That's 6 birthday parties we haven't held for you now.  I often wonder what you'd have been into. I know Bluey is huge nowadays, perhaps you'd have liked Bluey.  I can't imagine the cake Grandma would have made for you, the games we'd have played, the party bags you'd have had. I wish I could know what you would have been into so that I can imagine these things, but that's not the life we were given. Mummy and Daddy recently went to Disney World, and I wonder what you'd have made of it all. Would you have loved Disney like me, or not really been that into it like Daddy. I so wish I knew.  There are so many milestones we won't get to share with you. Your first steps, your first words, the first time you rode a bike, first day...
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Back in Intensive care - Room 5

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We were back in intensive care, this time in room 5. We were right in the back corner. Evelyn was very poorly. As I stop to think about this time it is like someone has poured icy water over me. My skin prickles and tingles, I feel cold and numb. There are certain elements of her story that I recall that make me physically retch.  Once she seemed as comfortable and calm as a baby can be having been intubated the nurses encouraged us to get some food. I really didn't want to leave. I was stood in the kitchen area at Ronald McDonald House while Aly tried to prepare us some food. I was a wreck; I didn't want to eat. I just wanted to get back to her. I was so scared that she would open her eyes, and I wouldn't be there for her to see that she wasn't alone. I was so scared that it could be the last time she ever opened her eyes, and I wasn't there.  Visiting became more difficult again as when ward round occurred, I wasn't allowed to be by her side. This might take s...
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Birthdays

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  I sit here right now, and my heart is racing, I feel like it might explode at any moment. This is not a good time of year for us. For over a week now I haven't slept well, constant nightmares waking me up, heart pounding, I don't feel safe.  I was always one for going big around my birthday, partying, enjoying the moment so it's very easy to continue that pretence, I can hide behind it. Every birthday is another year without Evelyn. Let me tell you about our birthdays 5 years ago.   2nd April 2019 - As usual I went to spend the day with my girl. Lots of cuddles. She hadn't been well after her vaccinations, which is normal for preterm and poorly babies as so much of their energy is going into just surviving. I remember Aly read her a bedtime story that night, and we left her to go to bed. That never got easy, having to walk away every night, it crushed me. 3rd April 2019 - As usual I turned up in the morning to spend the day with my girl, but this morning was differ...
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Those beautiful eyes

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  Evelyn had the most beautiful dark blue eyes. I could look into them all day. They really were the windows to her soul, and whenever we looked at one another I felt that unbreakable bond that we shared. Those eyes told us exactly how she was feeling, and ultimately it was with her eyes that she told me it was time to say goodbye. That is a part of this journey that is yet to come.  Today I want to tell you about one of the traumatic procedures that neonatal babies often have to endure, Evelyn being one of them. This is Retinopathy of Prematurity or ROP eye exam. The test is performed on babies that are born prior to 32 weeks and under 1501g in weight. Evelyn was born at 32 weeks and 2 days, however she weighed 1324g. That made her eligible for the test. ROP is caused when babies eyes haven't developed fully at birth. Sometimes the premature birth will cause the blood vessels to start to grow abnormally in the retina and this forms scar tissue, damaging the retina. If left un...
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The actress in me...

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 It has been a while since I wrote in my blog. It's been sat there staring at me. I don't think it's really any surprise as the more I write about our journey, the closer I get to having to tell you about when things took a turn for the worst, when Evelyn became so poorly that she went back into intensive care, never to come back out.  It is not that time yet.  I picked this up today as I am finding I am masking myself again. I am unable to articulate how I truly feel for fear of upsetting people and making them uncomfortable. Then I find myself crumpled in a heap on my kitchen floor, unable to move in my pain.  One of the starkest things, and I suppose why I understand the importance of positive touch, is the loss of my physical bond. Those of you with children know how it feels to hold them, to cuddle them, to feel them. It's been 4 years for me. The last time I held her, she was no longer there, I just held her body. For the entire month previous I had only b...
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Family and Friends

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  There aren't just medical staff on the NICU wards, of course there are other parents, family members and friends.  To start this blog, I want to say a huge thank you to our parents. They visited us regularly, bringing food to keep us going, gifts and news from 'normal' life outside of NICU and generally looked after our welfare. We are fortunate that our parents do live close enough by to support us like this. Also, a huge thank you to our wider friends and family who visited us in NICU, met Evelyn, kept in touch via texts reminding us you were thinking of us and loving us all. Not everyone we love live close to us, thank you all of you who kept in touch and kept us in your hearts. I know Evelyn touched all your lives. The thing about NICU, and I suppose other children's wards, is that there are loads of other families around, families that are like your own and families who are not. There was such a diversity of people in that one ward, people from differing cultu...
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