Rainbow, my dear little Rainbow… this last month has been the hardest time of my life to date.
Last month I was writing about your upcoming open heart surgery… we had no idea when it would happen but we knew it would; I was planning Christmas with you in hospital; I was terrified…
However, since I wrote that I feel like I have been to hell and back!
You made the journey to Bristol on 22nd December and I watched you go to sleep at 12.30pm on 23rd December and handed you over to the surgeons. I had no choice but to trust them. Although, I didn’t know whether I would ever see you awake again.
The last 3 weeks since surgery have been awful… RSV Bronchiolitis has a lot to answer for. You only came off the ventilator yesterday. You have struggled so much with lung collapses but finally you seem to be improving.
I thought we were going to lose you over New Year but despite everything you have pulled through.
You never made it back to Ward 32; instead you were transferred from Bristol PICU straight to PCCU in Cardiff. Today, you finally made it out of Intensive Care to High Dependency. They are hopeful that you will be off CPAP tomorrow too.
Our lives have changed again, Rainbow… Yesterday, we received a diagnosis of DiGeorge Syndrome (22q11.2DS). Nobody has any idea what it will mean for you because it truly is a spectrum disorder. You could have many severe problems or few mild problems. There doesn’t appear to be any correlation between the severity of one symptom to another.
I’m not scared, I’m not upset. I am relieved. I am relieved that we have a reason for your floppiness, your poor immune system.
Everything to date has been on your terms; so why stop doing something you’re so good at Princess.
We will take each day as it comes and try not to get too wrapped up in the future and what it holds.
I love you, beautiful girl. We all do.