Gosh, what a week it's been! Obviously we had the lovely Tea For Bea on Tuesday then on Thursday we had an outpatient's appointment with Dr Doom. I was chuffed to bits as she couldn't say anything negative about Beatrice and she even said hello to her 
I was really pleased to see her weight gain means she is now back on the weight charts, on the 0.4th centile 
Friday came, and dh and I went out for my best friend's birthday. At 9.30pm I received a call from an unknown number and it was Beatrice's gastro surgeon from Oxford! He had a lot to say, good job I hadn't started on the wine by then! Basically, he said that some surgeons will perform a jejunostomy under a regional anaesthetic for an adult, but no one would do it for a baby, because if anything were to go wrong during the surgery, they would have to be able to switch to a general anaesthetic anyway. So, he said the anaesthetist and someone from PICU would need to meet her to decide if a GA would be appropriate. He gave me 3 possible dates for surgery, but the first two fell a day before and after dd1 and dd2's birthdays. So I opted for the 3rd date.
Yesterday, Beatrice seemed really uncomfortable, had a high temperature and began to do large dark brown vomits with specks of old blood in it. I recognise these as signs that her tube is dislodging, so I rang the children's ward and they told me to take her in. They had no space on her usual ward, so we ended up on the other ward. It's horrible going somewhere with nurses who don't know her. And strangely, they had 2 TVs in the room and neither of them worked- I'm beginning to feel that TVs, hospital rooms and I do not match! Anyway, she had an xray and 4(!) hours later, a doctor came and said he felt the tube was in place, so we came home. What a fun Saturday night!!
This morning I took all the girls to the cinema, which Beatrice enjoyed a usual. After that we went to a May Day fair, but as it was outside, Beatrice got upset with the wind and bright lights on her eyes, they are so sensitive from not being able to blink. So we left pretty soon after getting there and I went to Boots to buy her a pair of baby sunglasses- I really hope they help her.
This afternoon, I was doing my ironing when I received another call- from her surgeon again (I was very impressed with his dedication to his work, calling on a Friday night and a Sunday afternoon!) to say we have a meeting with the anaesthetist and PICU team on 18th May, and if they agree to it, her surgery will take place on 19th June.
I started thinking about it all and it was too much. Imagining putting her to bed the night before, and kissing her to sleep before her GA. It terrifies me. If her brain cannot remember how to breathe after being ventilated, I will always know that it was me who agreed to the procedure. But then I remembered the title of this thread- and I mustn't, mustn't allow myself to get upset about something I don't know and have no control over. Until I have spoken to the anaesthetist, I don't know what all the risks are. Add in the fact that Beatrice is here, and continues to be here- she will decide.