On Thursday we went to see everyone at Neil’s work.It was lovely to meet all the people he has mentioned over the last year and it was extra lovely to spend some time with people who knew all about Jasmine and so I had a whole day free of explaining what was wrong with her.
Before we went out on Thursday, Jasmine had pulled her NG tube so we spent the day tube free too. It was good for me to see that people stare at her a lot without her tube, and it is not the tube that they are staring at necessarily.
Thursday night was a bit of a stress because I put the tube back down her nose as Jasmine screamed to let me know she hated it. And then, an hour or so later she vomited so hard, the tube came up too and I had to repass it. I stuck it down good and proper as passing it twice in an hour was all a bit nasty and I felt like an evil mum. I made up for it during the night as I decided to pause her feed for an hour before I went to bed and that seemed to work really well. She only vomited once in the morning. So it seems that pausing her overnight feed gives her time to digest food and she is sick less.
Today we had a trip out of London to Welwyn Garden City. It was great to go somewhere that seems empty compared to central London to get a bit of shopping done (it is never ending the stuff you need for a baby on dialysis and I hate shopping at the best of times). We were showing Jasmine the fields and horses on the way, even though she probably had no idea what we were talking about. She was more interested in her milk.
Neil bought Jasmine a book full of lovehearts, mirrors and the word daddy! To catch up I sat by her cot whilst Neil was doing his sterile handwash this evening saying mammy, mammy, mammy, until he caught me in the act and after connecting her, got his subliminal brainwashing book and put it in her face. Who can tell? Her first word will probably be domperidone or peritoneal dialysis or something.
She is doing lots of stuff now: She reaches out and grasps things like her tube and her blankets, she lies in bed clutching them to her chest. And she pulls her dress and bib up over her face. The other day she rolled over onto one side and impressed us no end.