Jasmine Stalker-Firth

Today Jasmine had her procedure to insert her Peritoneal Dialysis (PD) catheter. She wasn’t allowed any milk, so she was put on a drip to keep her hydrated. She went down to the operating theatres on the third floor at 1.30pm. The anesthetist removed the remaining milk from her stomach using the line into her stomach through her nose. She was put under a general anesthetic using a tiny mask over her mouth. She wriggled a bit, but once she was under I had to leave the room. The operation took about an hour. Once Jasmine had regained consciousness she was moved back to the nephrology ward.

Jasmine was a bit irritable once she was back on the ward, so they gave her some morphine. The nurses were checking her stats every 15 minutes to keep a close eye on her. The catheter is used to insert fluid into the lining of the abdomen. This fluid is then left in the abdomen and removes impurities from the blood by osmosis. The fluid in the abdomen has to be exchanged a number of times to clean the blood sufficiently. They are going to leave the catheter as long as possible before using it, to give the area time to heal. In adult dialysis the catheter would be left for a month so the skin heals and holds the catheter in place, and reduces the infection risk. Jasmine will probably not have this luxury, as the doctors may have to start dialysis at any time. Her electrolytes are fairly stable at the moment, so they will build up the amount of fluid used slowly. In adults the fluid exchange is done by machine, but in new born babies it all has to be done manually, and the amount of fluid exchanged varies.

Jasmine was bottle feeding today, but it is a bit of shock for her. She managed 10 mls from Ruth and later on I fed her 30 mls, which she promptly sicked up again. The nurses are trying to train Jasmine up to feel hungry, as she has been feeding continuously through the tube in her nose so far. She is back to 2.9 kilos, so her fluid is back down and she looks much less puffy.

While we were cuddling her we managed to knock off one of her nephrostomy bags. Luckily it was the left one, which doesn’t work, so Ruth just got a little “kidney sweat” on her jeans. The surgeon came in and decided that the left kidney has been given enough time and is completely non-functioning, so he removed the catheter by snipping the stitches and unwinding the pig tail catheter. The skin under the dressing was sore, so it was good to clean that and put on a fresh dressing. We had been hoping for a miraculous recovery from that kidney, so it is a shame to give up on it.

Today one of the doctors explained the procedure to insert the catheter ready to start peritoneal dialysis. This is difficult to do in babies as small as Jasmine, and there are lots of potential complications. Jasmine has been through a lot already, but she is a strong little baby. She will probably be going in for surgery tomorrow afternoon.

She had her cannula moved from her foot to her hand. She had so many bandages around her hand that we couldn’t get her gown on or off.

The nurse looking after Jasmine today said that she had to fight off another nurse to get to spend the day with Jasmine. It is really nice to think that Jasmine is a popular girl.

It was a lovely day. We got to hold her lots and have got the hang of getting her in and out of cot without setting off the alarms. The line in her femoral artery was taken out and she has a canula in her left foot now. Because her fluids are down she has had better blood results: she is losing less electrolytes and sodium and her creatine hasn’t gone up anymore. Her blood pressure has also come down.

Since she was born she has been fed my breast milk through her nose on a continuous feed,  so today’s main goal was to get her used to feeding through her mouth.  She didn’t like it much this morning when they tried a bottle and vomited. However, this evening we gave her a dummy dipped in glucose water and put it in her mouth.  At first she didn’t like the idea of having something in her mouth but soon got the hang of it and was trying to eat it.  With any luck she can gradually get weaned off the tube and begin to feed orally.  In this way she will learn to recognise when she is hungry and establish regular feeding patterns.

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.

The website was down on Thursday and Friday, as Zen Internet’s servers crashed and needed replacing.

Jasmine looked even puffier today. The fluid seemed even worse. She had high blood pressure and the diuretics weren’t doing anything at all. Her creatine levels haven’t come down, her potassium levels are rising, and even though the left kidney has started remarkably to produce a tiny amount of urine, her kidneys haven’t recovered any functionality. She is losing salts and she is entering into a critical state.

They want to begin dialysis as soon as they can. We were warned that only two thirds of children make it through dialysis until they have grown enough enough to have a transplant. Along the way they may be seriously ill because of the dialysis and they may need to be fed by tube because they cannot absorb the necessary amount of calories needed to grow. There are no guarantees.

The doctor said that some families stop at this point because dialysis everyday is a major commitment and no one can predict a child’s quality of life.

Jasmine is retaining too much fluid so she looked really puffy today and had trouble opening her eyes. We both got to hold her for an hour each and she slept peacefully in our arms. There was no change in her situation, just waiting for the diuretics to work and to see if the kidneys can produce urine which is of any use.

Jasmine could be in hospital for up to six months, but everything is still up in the air. We were warned today though that we should prepare ourselves for a couple of rough days.

At some point she will need dialysis but it would be better if this could be put off for as long as possible.

Currently Jasmine is retaining too much fluid so they are changing the diuretics to see if they can get the fluid out of her body and from her lungs to help her breathing improve and to give her kidneys a chance. This is the big challenge for now – reducing her fluids. They had to increase her oxygen today as she was struggling with her breathing, even though she still pulls the tubes from her nostrils.

We both held her for a long time today so that was lovely. Neil washed her in the morning, and I changed her nappy twice in the afternoon. She was snoozy again today in between wriggling and stretching and she is very beautiful.

Neil got to hold Jasmine for the first time today. He said that it was really nice but after holding her for a while he got cramp because he didn’t dare move. When we did get her back in the cot, we noticed some bleeding from the line in her left kidney, so her dressing needed changing. She was weighed again and was 3.3kgs, which means that she is retaining too much fluid.

Jasmine’s feed is up to 14mls an hour of breast milk. She is only on one drug to help her kidneys produce urine. The right one does, but not of a great quality. And the left one only produces blood, which is horrible to look at. She is on 0.2 of oxygen but she keeps pulling the tube from her nose so with any luck she won’t need it much longer.  She slept for most of today and it was nice to see her content after a hectic day yesterday.  Other than that there is no news today. We are all waiting and seeing so that the specialists can decide on the best course of action.

Thanks to everyone for sending us emails and texts and cards, we really appreciate it.

This morning Jasmine was transferred out of intensive care to the nephrology ward. She has a little room to herself with a window looking out to the sky. Jasmine was awake and moving about. She had her eyes open and was looking around. It was wonderful to be able to look at her and have her look back.Jasmine has her blood pressure taken every hour, with a blood pressure gauge around her arm. She really doesn’t like that! As a parent it seems as if the nurses aren’t paying so much attention, and it is a bit worrying. Really this is good news, as in intensive care the nurses didn’t leave Jasmine alone for more than a minute. Now she is stable, so it is good she doesn’t need to be watched so closely. We spoke to the doctor and they are planning her fluid intake for the next few days. They want to support her kidneys for as long as possible, as there is still an outside chance they may recover some limited functionality with Jasmine breathing better.

She is very wriggly and kept pulling out the oxygen tube from her nose and the other lines that she has in, setting off the monitors. She also turned her head from right to left so that she could look out of the window.

Ruth got to hold Jasmine for the first time, which was very moving. She only held her for five minutes as we were worried about tangling up her lines. After we helped to weigh Jasmine, she is now 3kg, but with the lines it took a long time.

My parents came to visit Jasmine. Ruth had her stitches taken out by another very kind midwife, and her scar is looking much better.