Millie’s story, by Nurse Amy

Millie is such a determined little girl, full of personality and she gives the sweetest cuddles. We call Millie sassy because she always makes her feelings known. If she likes something, you know it. If she doesn’t like something, you definitely know it!

I’ve had the pleasure of knowing Millie for over two years now. We’ve been looking after her since she first came home from hospital as a baby, when she was only around six months old.

The very first time I met her, our Lead Nurse Ken and I drove down to Southampton Hospital to meet Millie and Catherine. She was around four months old then, and she had already spent her whole life in hospital. She had been through so many procedures in those first few months.

Could you always be there for the children at Julia’s House?

Sometimes people aren’t always sure what children’s hospice care is or how we can help, so being able to meet families early makes such a difference. It gives us a chance to talk about the support we offer and, just as importantly, it means families know friendly faces are waiting for them when they come home.

Not long after that visit, Millie came to Julia’s House and we began caring for her here.

Millie has very complex health needs, and her journey hasn’t always been easy. She has severe cardiac conditions and that has unfortunately caused her to have breathing problems as well. But one of the loveliest things to see has been how stable she has become since leaving hospital, and how much progress she has made in her own time.

She used to need oxygen support during the day as well as extra help at night. Now she only needs oxygen when she’s feeling unwell, which is a huge step forward. Every small gain like that matters so much.

She’s also grown stronger physically. She can sit up more confidently now, hold herself up and has even started bottom shuffling around the hospice! Seeing those little milestones is incredibly special when you’ve known a child for years.

For the longest time, Millie only wanted to be in our sensory room. We’d try taking her anywhere else and she made it very clear she was not interested. She loved watching the lights, the bubble tube and all the calming sensory equipment.

More recently, we’ve found ways to help her feel more comfortable exploring other spaces. We now start in the sensory room and then make our way into the activity room through the garden. This has really helped her to get more involved in the different activities we have going on and play alongside other children.

Millie absolutely loves cuddles, singing and nursery rhymes. The other day, Carer Gemma was in the garden with her, singing ‘Horsey Horsey’ and playing clapping games with her on her knee, and she was laughing and smiling away.

Gemma even helped her try standing on the grass because she’s getting stronger in her legs now... but Millie was not impressed by the feel of grass on her toes! Her sassy side came out straight away.

Millie can make you work for smiles and giggles, so when you get one, it’s a brilliant feeling. I was playing peekaboo with her feet the other day and managed to get a lovely little laugh. Moments like that are so special.

Millie also has an older brother, Reggie. Supporting the whole family is such an important part of what we do. When Reggie is at school and Millie is with us, it gives Mum Catherine some time to herself. That time to rest, recharge or simply have a quiet moment is so valuable for any parent – especially one caring for a child with complex needs.

For families like Millie’s, knowing their child is safe, cared for and happy can lift a huge weight from their shoulders.

It’s been so special watching Millie grow stronger, become more comfortable with us and learn that our faces are familiar ones she can trust. She used to find it hard when Mum left, but now she knows she is safe here, and that confidence is wonderful to see.

Millie has come such a long way already, and it’s a privilege for all of us to be part of her story.

Millie’s story, by Nurse Amy

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