Category: Maisie’s story

Thursday 14th June Today is my 32nd birthday - one of the strangest birthdays ever. But I really don't care. My birthday is irrelevant. I can't remember much of it. But I'm relieved that they aren't planning on Maisie's surgery today. She is doing really well and is stable, so they are hoping for Friday… Continue reading Part Five

Wednesday 13th June We visit Maisie early in the morning. She looks a lot better. With colour in her cheeks. It is wonderful to see her. I miss her so much. As a mum you're used to your newborn being permanently attached to you: either feeding, cuddling, rocking or holding. So it was strange being… Continue reading Part Four

Treliske at 7am The next few hours are a bit of a blur (and I didn't write any of the rest of Maisie's story down - so I'm now going on last year's memory). I remember our consultant telling nurses and doctors to urgently get different medicines. The doctor who has been looking after Maisie… Continue reading Part Three

So, the doctors believed Maisie had an infection, but they also needed to rule out heart problems (which was highly unlikely). As parents your mind always wanders to worse case scenarios - but you never really believe the worst could ever happen, that just happens to other people, right? The plan that night was to… Continue reading Part Two

It is hard looking back to the last few days before Maisie was admitted to hospital. Looking at photos and videos you can really see her struggling and looking quite sick. But she'd also pick herself up, look calm and chilled out - so she'd always trick us, and all the professionals! For a few… Continue reading The first hospital visit, Part One

And everyone is besotted. The house is full of flowers and a sea of pink. Wisteria blossom falls and blows through the front door. Lowen meets his new baby sister and gives her kisses. All the grandparents see her and fall in love. Her first trip to the beach and she sleeps the whole time.… Continue reading She is here

In many ways, Maisie's birth story was perfect. Of course there were a few glitches here and there, but I remember it as perfect. Simply full of excitement, light and pure, pure joy. On bank holiday Monday, 28th May 2018, we had spent the day at home working on the finishing touches to the new… Continue reading Maisie’s birth story

So. Here is the post I hoped never to write, and definitely not so soon. I began writing this several weeks ago, but have only just now finished it... On 21st November, a cold, wet, dark Wednesday night, our beautiful Maisie passed away. Our fighter, coy smiler, first daughter, water baby, lover of lights, baby… Continue reading Untitled

Since the last blog post, we've been in and out of hospital, and currently, we are in again! She just hasn't been herself. Really tired and irritable, sometimes seeming like she is in pain. There are lovely times when she can seem quite relaxed for a while, but she isn't as happy and excited as… Continue reading Mitochondrial disease