Back in Intensive care - Room 5

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 several hours, and I would just have to wait to be allowed back in. It was torture. 

I could no longer hold her. When a baby is intubated, meaning that there is a breathing tube down their throat, there is a high risk of it being dislodged and damaging the windpipe. So, she could no longer have cuddles. The pain of that separation will haunt me for the rest of my life. I instead took to reading to her, every day, so she knew I was there, could hear my voice. I read Harry Potter to her. You don't half realise how dark Harry Potter can be until you are reading it out loud on a neonatal intensive care ward. I would place my hands on her so she could feel my touch. 

The problem with intubation is it causing inflammation and the build-up of fluid that needs to be cleared. You can hear and feel when this has built up as breathing becomes raspy and you can feel the vibrations of this on their back and chest. When it has built up enough it causes a lot of discomfort and so needs to be cleared. This is cleared with a suction device. My heart rate has just sped up at the thought of what I am about to describe, it's a procedure that fills me with dread just remembering it, knowing that she had to ensure this in her short life. The suction device would be inserted down the tube and turned on, clearing the airways. The way her body would convulse at that moment was so painful to see. My own body convulses now at the memory of that procedure. 

One particular night I had gone back to Ronald McDonald House for some reason. I can't quite remember how late it was, whether it was just for some food or to go to bed. I also don't remember if Aly was with me or with Evelyn still. All I remember is my phone ringing - Evelyn's condition has rapidly declined. I ran back to NICU, and I remember it was Kerry, one of her regular nurses, waiting for me to take me straight to her bedside. Evelyn was grey. She looked dead. She was still breathing though. All I could do is watch while the consultant worked on reviving her. Eventually, with changes made to the breathing apparatus, the colour came back to Evelyn's skin. She was alive and her condition was improving again. I will never forget that image, it is burned into my heart.

During the time she was back in intensive care I couldn't look at any of the previous photos we had taken of her. Aly's sister had made us a calendar of beautiful photos of her for our birthdays, but I just couldn't look at it. I wasn't ready to see her looking well now that she was so poorly. She had more tubes than ever all over her body. More medication than I ever remembered her having. She was physically separated from me in her incubator. I was losing hope.