Hello my little Rainbow,
Happy half birthday! Today, you are 6 months old. It’s been a rough ride to get here but we are here. There were moments I thought we wouldn’t get this far. But we have!
I am incredibly proud of you, Rainbow. The past few weeks have been a whirlwind. But you are making me more and more proud as the days go on.
You went to the general ward on 3 weeks ago and while you are still in hospital, we can see home on the horizon. Next week we have the pre-discharge multi-disciplinary meeting where everyone involved in your care will be present in one room; from general paeds, your lead paediatrician, immunologists, dieticians… you name it they will all be there.
From what the team were saying this morning, home is closer than I want to believe. 3 months are coming to an end. Our life is going to change completely once again.
I’m terrified at the thought of you coming home. I’m so anxious that things aren’t going to go well… but we can work on this my little girl.
In the last 2 weeks we’ve been trying you on the bottle… it started with 30mls over the day and today you’ve taken around 400mls. You are only being tube fed overnight while you sleep.
Your weight has increased to 6.8kg (14lb 15oz). When you were admitted almost 3 months ago you weighed 4.95kg (10lb 5oz). I am so pleased.
We’re still struggling with spending time down the hospital. Boyo has had a stomach bug, Princess Pants had the chicken pox vaccine last Tuesday and Comma has had bronchiolitis. I’ve had a stinking cold too.
While I’m not with you, I know you are well looked after. Why? Because the play therapists fight over getting to play with you. They all understand that they have to be careful not to jeopardise your health – in fact, they’ve made arrangements for you to play in the cardiac playroom despite you being on the general medical ward.
It’s been such a tough 3 months, Rainbow… I’m scared of returning to ‘normal’… I’m scared of us being independent of the hospital… I don’t want to believe that it’s going to happen. I don’t want to be disappointed again.
I will be down to spend most of the day with you tomorrow and I can’t wait for us to play together again.
All my love,