It has been a very tiring two weeks since we came out of hospital. What with running about constantly picking up antibiotics and the community nurses coming in (or not as the case may be), I was very glad when Jasmine’s course of antibiotics came to an end. She was vomiting loads more than usual and also had a big rash all over her back and legs – we think due to the antibiotics. So this week is all about settling back into a routine. Saying that though, this morning she had her Hep B part two injection and will no doubt be vomiting and thrashing about later on, as it didn’t agree with her last time.
On Monday, we went to GOSH and I was a bit worried on Sunday as Jasmine hadn’t gained any weight at all for three weeks. Admittedly she was on antibiotics for two of them, but whenever Jasmine doesn’t gain weight I feel like I have let the team down. I know this is silly as everyone at GOSH always tells us that we are doing tricky stuff and give us lots of positive pep talks. Anyway, Jasmine may not have put on weight – she is still 5.5kgs (12lbs) – but she has grown and is 62cms long. And she is filling out. Some of her clothes are too short and she is bursting out of some of her babygros.
After clinics we went to the champagne bar at St Pancras. Neil and I have been trying to celebrate our wedding anniversary for days. Each time we tried to do so, something would happen like one of the dialysate bags would split or we would run out of antibiotics and have to sprint off to the hospital. Sometimes it seemed to happen literally as one of us stood there ready to open a bottle of something nice to have a little party. We managed a little celebration on Monday, finally!
It was funny in the bar. We were sipping away on our bubbly (Pol Roger) and had propped Jasmine up so that she could see the Eurostar trains and people would wander by and say things like, “Oh never too early to start on the good stuff,” etc. We had a lovely afternoon and I went to sleep for a couple of hours when we got home so that I was fit and raring to go on dialysis duty after our celebrations. We have been married six years now so it is getting pretty serious.
Yesterday, we took it easy and enjoyed relaxing at home. Jasmine was still super pukey but she is still drinking out of the doidy cup and has had her NG out for a week now. At clinic Jasmine gave the doctor a drinking demo. She was very impressed and said that it is rare for a renal baby to have an appetite as they behave like anorexics (not anorexic nervosa : people starving themselves, but the medical anorexia: reduced appetite because of a medical condition such as ESRF). So, it is good that Jasmine appears to have some appetite.
This week we are giving her extra sweetened water (three spoons of maxijul in boiled water = 25 kcals) whenever she is thirsty, especially when she is on dialysis as that is the time she is the most vomity, and lots of milk. She is back on porridge too. We are building up to other solids again, after she lost her appetite on antibiotics.
We have been feeding her more slowly, which is quite difficult with the doidy cup as she gulps the milk and wrestles with you and won’t let go of it and reaches out for the cup when it is in sight. We lie her on her front straight after a feed for about 15 minutes and that really helps. It allows her to digest her food and somehow stops vomiting – it is magic. She is happy in this position. Earlier when I picked her up to put her back on my shoulder she started to cry. I had to put her back down on her front – well whatever works.
Come on guy’s where’s the new blog? x