Violet’s first ever trip in her car seat was in an ambulance on the way to Alder Hey Children’s Hospital. I still wasn’t strong enough to walk or stand up for long periods of times so I was on the hospital bed in the back of the ambulance trying to still make sense of the last few hours.
We arrived at Alder Hey in the middle of the night. I was in a wheelchair being pushed down to the ward and my Mum was carrying Violet in the car seat. When I got the ward I could see other babies in cots and young children hooked up to monitors and the constant beeping of the medical equipment. That night was again such a blur, I hardly slept as I knew in just a matter of hours my baby would be going for surgery.
Violet has the most amazing neurosurgeon ever, Dr Mallucci. He is the most incredible man I have ever met. He told me that Violet would be going in for surgery shortly. I cried and cried. When the Doctor reads you out all the possible consequences of brain surgery and you have to sign to give your consent. I had only been a Mum for a few days. I didn’t know if I was doing the right thing. I was surrounded my family, friends, Doctors and Nurses and yet I felt so alone. I felt like no one understood. I was sad, upset, full of emotion and so angry. Angry at the world for what was happening.
There were times when I wanted to take Violet and run. Far, far away. I wanted Violet back in my tummy. Where I could look after her. No one could harm her in there. She was mine. But now, me, her Mum, the person in her life that is meant to fix everything, couldn’t. I couldn’t do anything. I felt hopeless and completely helpless. Her life, my whole world, was in someone else’s hands.
Walking away from Violet in that Anaesthetic Room was, hands down, the hardest thing we have ever had to do in our lives. I would of gone through a million zillion bad epidurals if it meant my little baby could not be on that table. Our tiny baby being left with strangers who were going to operate on her. My Mum and Glenn were trying to be strong for me the past few days but at that point I could see they were broken, not only were they worried about Violet but also concerned about me too. Violet had only been in our lives a few days but we felt so lost without her there.
It was the longest 4 hours ever. I smiled fully for the times in days when I saw her gorgeous face back from theatre and strangely, her eyes were wide open. We had never seen them open properly before. (The pressure of the fluid on her brain was making her eyes look down). She was staring at me. Like properly looking at me. She fed so much and was staring at me as I breastfed. She looked absolutely beautiful. She had a bandage on her head where they had operated but they told me that with brain surgery she would be in no pain as she can’t feel it. Nothing would be sore and she wouldn’t be in pain whatsoever.
Oh she was stunning. I changed her bum. I took her out of her theatre gown and put her in a sleepsuit and she was perfect. In every sense of the word. The huge sense of relief that evening was nothing like ever before. My baby was OK. They had looked after her. How do you repay someone for saving your daughter’s life? How do you say thank you for mending your entire world?
There was obviously a long road ahead and Doctors did tell me that the surgery they did could fail, which it did after three months, but right then that night I felt happy. Happy and so thankful.
Violet is doing so well these days and I promise my next post will be a happy one and one that shows how brilliant she is doing now! She is seen in lots of clinics and by different Consultants but she takes it all in her stride. Violet is so strong and brave and she makes me so, so proud every single day. If she ever does read this, I love you Vi – so very very much.