So we arrived at the hospital expecting another day of terrible things. However, we had a lovely day. Jasmine was having an ultrasound but when she got back the doctors told us that she was stable and as long as she continues to be so, they will hold off with dialysis for a day or two. It is better if her fluids reduce, as it will make the operation to install the dialysis catheter (in her stomach) much easier. They will do the operation early in the week unless she enters into a life or death state in which case they will do it earlier.
She had a heart murmur yesterday but this is all due to the excess fluid she is carrying. She does remind us of a beautiful cabbage patch kid as she is still looking puffy but managed to open both her eyes. She is regularly pulling the oxygen out of her nose and yesterday during her ultrasound pulled the feeding tube out of her nose too. She didn’t like the ultrasound and made her feelings known. She also turns her head if it is put in a position she doesn’t like.
We met another parent in the parent’s room who was in with his 20 month-old daughter Blossom, who had an infection. They had gone through the same early days and then they had managed with dialysis for twenty months until Blossom was big enough for a transplant. She has her dad’s spare kidney and looks like a happy normal baby. He was really kind to take time out of his own worries to help us.
We googled about the internet too to look at how babies manage on dialysis and found www.savebabygavin.com. This family managed to look after their boy and raise the money for a transplant operation. He has his mum’s spare kidney.
We mentioned to the doctor that we had been reading things on the internet and he said that we shouldn’t as you only find the worse case scenarios. This made us laugh a lot. What could be worse than total kidney failure? Funnily enough though, there are some hideous stories out there much worse than total kidney failure – so be warned if you go looking.
It is official that I am from good working class stock and have definitely missed my vocation as a wet nurse. The nurses on the ward have organised me a nice breast pump so I can sit and pump away and I am thinking of selling my spare milk on e-bay to weird men who have strange fetishes to make a few bob. Jasmine likes my milk too as she was chewing her fingers yesterday, as for several hours she was nil by mouth in anticipation of her catheter operation. They are still fortifying my milk as she is on restricted fluids but sometimes it can be a bit too rich for her and the other day she vomited green stuff.
We got to hold her for quite a while yesterday and she stopped crying immediately which was very nice. She is good at filling her nappy especially when the nurse takes it off to weigh her (she had lost 20gs of fluid) and we are so impressed with her and look at her all the time with awe and love.
My caesarian scar has healed up nicely and I am back in my jeans and had a bath last night for the first time. The midwife asked me the other day if a black bruise was off my trousers (she thinks I don’t get washed). I now have a big lump on my stomach which is normal and could take up to a year to disappear. This was not mentioned in my UCH ‘Guide to Caesarian Sections’ pamplet. Not that it would have made any difference if I had known, it just looks so weird. Good job I burn by moonlight and never wear a bikini in case I blind people on the beach. Although I do have a shelf to rest my beer on.