The Second Chest Infection...

We had been carrying on as normal in our new way of life, appreciating the time we had together as a four. Everything was becoming easier. The endless appointments and visits were just normal. I had noticed that Amelia was becoming a bit chesty and a little cough had come back. This time I knew the signs to look out for. Any sign of discomfort or breathing would be a red light that would tell us to go to hospital. I think Paul and I knew that another hospital stay was on the cards.

This time around, I was more worried about Penelope as she had become so used to having her baby sister around, as had I. The thought of having to split myself in two again was making my anxiety levels increase. Unfortunately there is nothing I can do there, unless I could clone myself.

As part of Amelia’s condition she also has a cleft palate, due to the muscles not joining in the womb. We had an appointment with the whole cleft team to talk about the impending surgery and everything else that would follow. I had done a lot of research into this and I knew in my gut that I didn’t want to have her cleft fixed. I believe that her cleft has saved her in more ways than one. It gives her the extra space to breathe, something that I think also helped her during her early days.

I knew that even if they were to operate on the cleft, it wouldn’t be until she was at least 18 months and fed via a G tube. I had said this to Paul, but I think he wanted to hear it from the professionals. The cleft team are amazing and  are there for us when we need them, but we decided not to put Amelia through this. We know that Amelia will never talk, so why put her through an operation that could be life threatening. I have this fear of losing her on an operating table and I can’t do it.

Amelia’s heart specialist has been with us since the birth. He is a wonderful, kind doctor who has gone above and beyond for our family. Amelia also has a hole in her heart that hasn’t yet closed, another thing that needs to be monitored. I will never forget that day of appointments, as that’s the day I became this roaring medical mum. I found my strength and my voice to let my daughter be heard.

Our doctor could see this and he understood. He knew we didn’t want any interventions that could help but also hinder Amelia’s quality of life and he set up meetings with all of Amelia’s medical team and Keech team to plan an end of life care plan for Amelia. He wanted Amelia and us to have the most dignified treatments and care.

I remember whilst all of this was going on Amelia was throwing up, I was standing in the room with Amelia over my shoulder throwing up into a muslin whilst I spoke about her end of life care. I could see these two student doctors looking at me, initially I thought they must think I’m crazy, but maybe they were looking at me thinking ‘how the hell is she doing this?’. As we left, our doctor took both my hands in his and looked into my eyes and said ‘I’m so sorry’

There it was, the honesty and acknowledgement I had waited so patiently for. Of course I cried , it was a cry of relief. I wasn’t going mad thinking my daughter had not long to live. I felt listened too and heard. This doctor had seen Paul and I through most stages, the doe eyed, hope filled new parents in the Nicu, to the fully accepting Parents of a very disabled child. All we have ever wanted is for Amelia to be happy, comfortable and loved. She has all of this from us and now her medical team also understood our wishes.

When you have a child with a life limiting illness, it’s like you are in constant battle with your mind. You know what is best and what you should do, but then you constantly feel like you are wrong or not doing enough. Luckily, Paul and I have always been on the same page so we are always together with our views, including during the pregnancy.

We feel that Amelia is here for a reason, something bigger than ourselves. That child has fought her way here. We had every test available prenatally and she was adamant that she wanted to be here. I remember reading about Nemaline new-borns and how some do not survive natural birth. Amelia was breech so delivered via c section, I feel like this saved her. This saved her the energy to come out and breathe and her cleft allowed her to have more space. I really do think this is why she came off oxygen a lot quicker than we thought.

Amelia is our angel. My mum has said all along, ‘she is an angel, we have just borrowed her for a while.’ 
This is the only way I can get through everyday, by knowing the worst and thinking that anything else is a bonus. I love my daughter more than words but I can’t save her. I would give anything to take all this away from her but I can’t. What I can do is give her the best of me and love her unconditionally.

We took Amelia into children’s A&E on the Sunday afternoon due to her cough, as we knew it was time. She was really struggling and seemed very out of character. We dropped Penelope at my in- laws and off we went to our second home. The hospital knew we were on our way and we were seen straight away and put into a private room. Amelia always has a side room, as she is so susceptible to anything and everything.

This time I was medical mummy. I had her bag prepared and packed with everything she would need, her night light, cuddly toys and blankets. Everything that smells like home. I knew she would be admitted and I knew it would be another long stay. She was put onto oxygen and antibiotics after half an hour, and also had blood tests this time. I felt this was odd but we went with it.

Amelia was admitted onto the children’s ward at 8pm, all the nurses were there to greet her and she was in the same room as before. This time I wasn’t scared, I felt welcome and safe. This time I had Amelia’s folder I had put together, full of everything since she was born. I remember the nurses commenting on how prepared I was, ‘I have to be’ I said. When you have a medically dependent child you have to be as prepared and organised as possible.

The nurses sent us home, told us to rest and that she would be in the best hands. We knew she would be but it still doesn’t get easier leaving your child in hospital. It’s that horrible mum guilt again. If only I could be in two places at once. Penelope needs me more, she knows when I’m not there and she would notice her baby sister not being around. The following morning, I was in a soft play with Penelope (I wanted to cheer her up and give her some normality) on the phone to our keech nurse explaining the events of the previous night. I spent the next two weeks basically yoyoing between home and the hospital. That’s my life now.

This time around I know what to expect and when to be there etc. Also, our amazing Keech nurses and community nurses visit Amelia and spend time giving her cuddles. It helps so much as I know she isn’t alone all the time. The nurses and care staff at the hospital give her endless cuddles too, so she is never without attention.

Amelia finally came home after a 2 week stay. I couldn’t wait to have her home. We all missed her so much. I suppose it’s our reality now, it’s really tough but it’s our life. Penelope was very excited to have her home and was straight in her cot to give her a big sister cuddle.