On Monday we went for our breakfast in Highgate. It was very nice. We went in Weatherspoons where they serve quorn sausages, which was very exciting. I had one of those and an egg banjo and Neil had a bacon butty and pots of tea. Jasmine took all of her feed and we were thrilled and then we wandered around the park and had a lovely time swinging each other about.
Alas the feeding well wasn’t to last. We have tube fed Jasmine most of the time since then. It is all getting a bit stressful. She will eat solids and drink water, but doesn’t want anymore milk. So now we have her on a continous feed, hooked up to her feed pump, to get this milk down her. I have spoken to the dieticians many times but they don’t have any solutions. Jasmine is in renal failure and according to them all babies in renal failure don’t feed. So, they treat her like a baby who doesn’t feed and has never fed and that is it. This approach has worked for other babies under their care, so it works for Jasmine.
She is sitting in her buggy puking and spluttering as I type this and I feel very tired and extremely violent. Perhaps I don’t understand anything at all about babies and feeding but, I just don’t believe that a baby, even one in renal failure, who fed perfectly well would overnight just stop feeding altogether, especially since it coincided with yet more feed changes. Her SMA mix is 250g of SMA to 550mls of water and on top of that we add three scoops of maxijul and one scoop of vitapro. We give her 500mls only. It is very sweet and would make me puke if I had to drink it all day.
Yesterday we put her on the continous feed all day as we were really tired. We went for a picnic in the park and then for a wander about near the Arsenal stadium. At one point Jasmine was a bit vomity and full of wind so I had her on my shoulder and the feed pump in a pack on my back and a woman stopped me to show me her daughter. She told me that her daughter had been tube fed for a year and then had a serious operation and now was fine. Her daughter looked big and happy and about six years old. This was very encouraging and very kind of her.
Today we are going to rest and regroup and then tomorrow we will start tinkering again, as we have a few new ideas up our sleeves.