The last day

After a very restless Friday night, I went over to the hospital at about 6am to sit with Raffy. Fred arrived just after 8am after organising Tadhg and Clementine at Nanny and Poppy's house.

The procedure was scheduled for 9am but we were given a couple of extra hours to smother Raffy with kisses and whisper positive words in her ear.

I was a nervous wreck and just had to try and occupy myself till the call came. Fred went over to Ronald McDonald House to do some washing. Derek (our nurse) rang me and let me know the Raffy was off ecmo and still alive. Her blood pressure seemed steady but she was in an extremely critical condition. I immediately rang Fred and he raced over to the hospital. I was just shaking like a leaf by this stage. We went in and saw her and it was just a glorious sight to see her without the awful ecmo machine next to her. We each took one side of the bed and just sat holding her hand and stroking her forehead. We stayed like this for quite a while.

Eventually her blood pressure started to drop slowly. When it got to 29, I called the doctor over to let her know and they put screens around the bed. I knew this was Raffy's final farwell and let Fred know as well. When her blood pressure reached about 20, the nurses started unhooking all the lines and tubes as quick as they could. They wrapped her in the quilt I had made for her and placed her in my arms as soon she would be gone. Fred ran out the room in tears. Strangely, I was quite calm which surprised me. So there I sat with Raphaela in my arms slowly dying. I told her what a brave gorgeous girl she was and that she was going to meet my mum now who would take care of her. I told her how much we all loved her and would miss her. I told her of all the other angels she would meet and have fun playing with. And then I told her that one day we will meet again and that I can't wait for that day but for now, she has to go on ahead of me.

Derek came over and listened to her chest and confirmed that her heart had stopped beating. He then disconnected the ventilator. I sat for a while longer still talking and kissing Raphaela. Fred came back into the room and he sat down and had a cuddle and kiss too. We eventually left her so they could remove all the lines, tubes, tape and close her chest up.

When we went back over to the hospital, she looked like a perfect sleeping baby. We gave her her first ever bath. We dressed her in a cute little outfit. We did hand and foot prints. We took lots of photos. And then with heavy hearts, we had to leave our beautiful princess behind.