I am currently sat watching you sleep in your cot.
You have an NG Tube feeding you 21mls/hour of Infatrini Peptisorb.
Your airways are being encouraged to open that little bit more.
Your heart rate, respiratory rate and sp02 levels and are being continuously monitored.
Your Blood pressure is being checked at 30 minute intervals.
We are in hospital again. This time, though, we are at Noah’s Ark Children’s Hospital for Wales. We are where your cardiology team are. We are not in a hospital from another health board. We are not being seen by doctors who are precious over your medical records.
It all started with an appointment. An appointment to gather further information ready for your case to be presented to the JCC to decide whether surgery really would be the best option for you.
We didn’t come home.
They were concerned about your feeding, concerned about your weight gain (or lack of it). They were concerned that they couldn’t see anything through your left lung during the echocardiogram. They were concerned that your little heart is under too much pressure.
Since Monday, you have been up and down although for the first time you are smiling frequently at us. For the first time you have enough energy to be a 3 month old.
My darling Rainbow, you have to get fit and healthy because you are going to be having surgery in 6-8 weeks. You will be undergoing open heart surgery to fix that pesky hole. I’m still struggling to get my head around it all… I’m still finding it hard to understand.
Fixing your little hole is going to be like a walk in the park to those surgeons at Bristol. It’s the having no control over the situation that gets to me. I have no choice but to trust the team we have around us because they know far more than I do.
At 3 months old you are enjoying your 4th stay in hospital and we know this will be our longest yet… it already is.
We know that you have at least one more stay.
But for now, my gorgeous girl, I’m going to concentrate on you getting better. We need to get you fighting fit.
I love you now and always.