Jasmine Stalker-Firth

Jasmine had a big poo at midnight. We had given her enough laxatives to make a horse go and we had been massaging her tummy and making little bicycle movements with her legs in order to get her going. We were really worried and had a plan in place with our clinical nurse specialist to take her to hospital if something didn’t happen by this afternoon. People on peritoneal dialysis just can’t get constipated – it is too dangerous.

So, when we heard the rumblings and checked her nappy, we trampolined up and down on our bed and danced around her cot. Jasmine went back to sleep as she didn’t know what all the fuss was about. After that she vomited a little bit through the night: 1am, 3am, 5am, 6.30am and then her food pump beeped at 7.30am to finish. But I just didn’t care that we were up half the night and don’t now, even typing this cross-eyed. Jasmine has had a poo. Hallelujah.

It reminds me of the time at GOSH when she had terrible bowel problems after her catheter insertion operation. She was vomiting bile for the whole weekend and the surgeons were concerned that there was a kink in her bowel and the catheter would have to be removed. On the morning of her first poo, the lovely nurse told us that she had been running up and down shouting, ‘Jasmine has had a poo.’ And then when the consultant came in and asked how we were, I said: ‘Jasmine has had a poo.’ And he was very nice and said that he had heard. And I felt like such a plonker later on when I thought about it and Neil kept teasing me.

This morning around 8am I was lying in bed trying to sleep but couldn’t as Jasmine was singing in her cot again. So, I got to thinking how I love weekends as we don’t have to phone anyone about fixing things in the flat. Two minutes later there was a knock at the door and it was a man who had come to look at our light fitting in the bathroom. Fantastic. I love him! He has ordered a new part and Neil has taped it up as it is dangling over the shower and we need to get a wash.

When Jasmine was singing I sang back to her ‘Hello, hello, hello’ and I swear her next sing-song was a ‘hello’. ‘Did you hear that?’ I asked Neil. He did.

Neil is in bed today with a man-cold so Jasmine and I are nursing him back to health. However, she threw up most of her morning feed, so she wasn’t feeling none too clever either. They are both snoozing nicely in bed as I sit in the corner typing. Good job our bed is kingsize. I have told Neil he has to stay put and can’t take more things back to Argos today. I might even go back to bed myself. At least we don’t have to do much today – just put her on her machine tonight.

One other good thing that has happened is that Jasmine’s blood pressure seemed lower this morning (92). It could be a blip but I am hoping that it is a sign that we are taking off more of her fluid. I will check it again later. She had an extra strong dialysate bag on her machine Monday, Wednesday and Thursday this week to help strip the fluid. Last night we gave her a break. Strong bags are not so good for her peritoneum in the long term and they make her vomit more. However, she vomited most of last night so it wouldn’t have mattered. Today and tomorrow she will have strong bags. The plan is to get her into the best shape for her scan so they can get a good look at the heart and also just bring down this blood pressure. High blood pressure in a baby isn’t good. High blood pressure in anyone isn’t good. We have to look after our hearts. Mine is called Jasmine.

Jasmine had her 3rd set of immunisations yesterday and was grumpy last night. Today she had her usual epo injection making a total of four injections in the last 24 hours – two in each thigh. My poor baby is totally fed up and cross today and a bit sleepy.

She has high blood pressure too. The results of the ambulatory blood pressure cuff proved that she has had a consistently high blood pressure for some weeks now. She will be getting her heart scanned on Monday to see if it is working too hard. A stressed heart can lead to all sorts of complications such as enlarged or dilated chambers. Looking in Neil’s cheery pediatric dialysis book, I found out that a child with ESRF is more likely to die from cardiac arrest than kidney failure. I nearly had a cardiac arrest myself reading that. Lucky for us, they are on the case down at GOSH. So for the rest of this week Jasmine is on one extra strong dialysate every other night until her blood pressure comes down and we will wait to see what they can see in the echocardiagram.

Jasmine is also constipated and has been described an extra laxative PRN (pro re nata which means as it is needed. We are so up on our nursing terms now). It is important that she keeps regular otherwise it can cause problems for the catheter. In the worst case scenario, if she got too bunged up, the catheter would flip upwards in the peritonium and stop working (draining and filling) and then have to be removed.

We have given up lying her down to let her kick her legs as it makes her vomit. I guess we will only be able to do that when she has an empty stomach. On Tuesday we took her to RIBA and laid her flat on a nice big chair: a Mies van der Rohe no less and she sicked up twice on it. He is obviously not her favourite architect then. Good job we were armed with a large supply of baby wipes. They clean up everything. Heaven only knows what they are doing to her bum.

Yesterday we spent the day trying to get a light fitting fixed in the bathroom. It has been out of action for over a week and Taylor Wimpey our customer care people never got back to us, even though Neil phoned them everyday. I decided to keep phoning phoning their offices until I got a result. Eventually, the receptionist gave me an alternative number which led to me being given at least 10 different phone numbers to call until I reached their head of all heads who told me that they have made everyone redundant. Normally, I would be sympathetic but at that point I said that I just didn’t care (and felt quite bad about that afterwards).

After my phone-a-thon, the TV man came round as we don’t get a good reception as the aerial is shared across 400 hundred flats and everyone goes into the cupboards and tweaks the aerial amplifiers so as one person gets a better signal, another person loses channels. This has been yet another irritation. And since we have to stay in for the next year we need all our channels! He didn’t fix it *sigh*.

Ours is a very small flat, and most the time I feel that we are very lucky, as I can’t imagine what it is like to live in a house with a garden etc., it would be impossible to keep all that going and do dialysis. I guess most things are manageable, but when you are tired after another night of dialysis and worrying about a poo shortage, when things don’t get fixed, it just seems worse.

In fact Neil has just thrown a big fit because someone has sent us a letter ‘Neil Fish and Ruth Staller’ but not paid enough money on it so we will have to go to the sorting office and pay £1.27 to pick it up (the last time this happened it was my brother’s Christmas card and I was very pregnant and unimpressed). We will have to physically go there because Neil would have register on the Royal Mail website as Neil Fish to pick up his mail and he refuses and thinks that they are all a bunch morons. I just can’t type this for laughing so hard (I don’t know to whom he is referring) as he is jumping up and down like Basil Fawlty. So this had better be a good letter or the sender is for it.

One good thing that happened yesterday was that we had a designer come round to talk about storage solutions for our flat. He had lots of ideas and it was great. So now we are in the process of turning our flat into the TARDIS so that should make us feel better.

Another good thing that happened was even though Jasmine had her jabs, she didn’t run a temperature and slept all night. She didn’t even begin to vomit until 5.30am this morning, so hopefully her vomiting has settled down a bit.

At about 8am this morning, she woke me up by gurgling and cooing and singing in her cot for the best part of an hour, waiting for her dialysis to finish and for her feed to begin. She is really funny. And then she didn’t vomit at all at 9am feed for the first time, in what feels like, weeks (although she spoilt it by having a small vomit at 11am). We are wondering if it is because she took off more fluid last night and so has more room for milk. Speaking of which it is time for her feed.

Jasmine is getting more active everyday. Yesterday she tried to roll over to one side when I was changing her nappy. She can also reach out for things and pick them up. And when you wave at her she waves back at you. Her Granddad Firth will be thrilled as he has been waving at her for weeks. His hard work has paid off.

Today she is lying on the floor listening to ‘La Traviata’ and is gurgling along and waving her legs about. We have decided that she needs more floor lying time so that she can learn to roll over and all the rest of it. We are holding her back as we hold her far too often (all the time) because a) we love her to hold her, and b) to stop her vomiting.

Her vomiting has calmed down a bit now we have left her feed at one spoonful of maxijul. She was only sick at 1.30am this morning and then at 6.30am. And then after her 9am feed.

Yesterday it was a similar story during the night and in the morning and then she wasn’t sick for the rest of the day – just a couple of posits/possets (?? little spoonfuls of sick). I have no idea how to spell this, it was what the nurses said on the ward. I googled for the right spelling and read that Samuel Pepys used to drink posset: a mixture of wine and hot milk and spices which would curdle before you drank it. So posset it is then because that is exactly how Jasmine’s possets look, especially after her morning medicines.

Jasmine has been vomiting more than usual since the dietician changed her feed. She was fine with one extra tablespoon of maxijul, but two spoonfuls have pushed her over the edge. She was vomiting through the night, last night and the night before, so we haven’t slept properly for two nights. And then tonight just before I sat down to write this I checked in on her and she was lying in a pool of vomit. It was all in her hair and round her neck. Poor thing. We have changed her feed back to what it was and just increased the volume and hopefully that will do the trick and we can all get a good night’s sleep.

We had our dialysis deliveries today and the guy turned up an hour after the slot we were allocated: 9am-12.45pm. This was rubbish, which is a shame as normally they are fantastic. This man had no end of trouble getting into the building (his small van was far too big to into the car park so he had to park outside) and getting lost (and was driving about our street asking people for directions!?!) and getting stuck with his trolley in the lift and making the lift jam until it made lots of alarming noise. He was just not having a good day. I was so tired at that point I thought it was funny, which probably didn’t help matters, and he nearly had a fit when I said that I hoped we didn’t get stuck in the lift after what he had done to it.

Lucky for us, we didn’t wait in *just* for him all morning. Oh no! We had other things to look forward to. We had our Fresenius deliveries which turned up on time this time and altogether. Last month they were dreadful, especially when I rang up to ask where my deliveries were before 9am (as their driver had mistakenly rung me up at 7am to collect supplies and not deliver anything) and the woman who answered said that she was a nurse and asked me to get off the line as she was waiting for dying people to ring her up and wasn’t interested in my problems.

We also had the community nurse come round this morning. We practised our subcutaneous injection techniques again by injecting a rubber ball with saline solution. It was good, except I had to wear very small latex gloves which cut off my circulation. She has left us a DVD to watch so that we know what to do in case Jasmine ever goes into anaphylatic shock after an injection. We will be getting out the popcorn to watch that one.

This evening I was so tired after the day’s excitement that it took me ages to set up the machine. I went into a trance during one of the three minute hand washes as I was so tired and washed my hands for about five minutes which would have been fine had I not touched the wall when I was drying my hands and had to wash them all over again. Once I had done another long handwash and got to the machine I realised that I hadn’t set the machine to self-test after I had connected one of the bags. I am not sure if this would have caused any problems from a sterile/safety point of view, but I wasn’t going to take any chances. I scrapped what was on the machine and started all over again. To do this I went off to wash my already clean hands and then realised I hadn’t got my equipment out and had to rewash my hands all over again once I had gotten my equipment ready, before I got the machine self-testing for yet another three minute handwash. My hands were very clean.

Tonight, after Jasmine vomited everywhere, she was beeping away as she wasn’t draining well, so I tipped her this way and that to get her to drain properly until she started to cry and the beeping stopped. Then just after she got back to sleep, Neil couldn’t get anything out of her stomach when he aspirated her tube (after all that vomiting) so he had to wake her up again to feed her some milk so that he could test the tube and get some milk back, before setting up the overnight feed. She was understandably upset about that too. Imagine spending the best part of the day vomiting because someone has fiddled with your feed and getting into bed for some shut-eye and then people come in fiddling with you and tipping you up and down and pulling the contents out of your stomach and waking you up to force feed you. Not happy!

Most of the time I try not to think too much about it all (especially when I am torturing Jasmine) and just get on with the task in hand, and luckily there are lots of tasks to get through so I don’t have to think at all. But on days like today when things don’t work properly and I haven’t slept properly, I get a bit teary and a bit frightened and a bit fed up. At times like these, I phone my dad who says: ‘Never mind, eh.’ He says this because he is a very wise man and knows that there is nothing in the world that anyone can say to me that will make it better. ‘Never mind, eh’ is the only thing to say. It gives me the strength to keep going, to go to bed, to get some sleep, and get up tomorrow and start all over again.

The days are just flying by. On Monday we went to GOSH and Jasmine had her usual checks and bloods done. They are quite pleased with her progress and said that she was looking much better too. However, her blood pressure (BP) is still a cause for concern so we borrowed an ambulatory cuff and Jasmine wore it for 24 hours and it took her BP every half hour during the day and every hour during the night. We got a phone call today to say that there is nothing to worry about and we will find out in more detail what her BP is like next week. It varies a lot though. Tonight it was good (88) as she was snoozy, but it fluctuates. We are continuing the same amount of medicines but increasing the dialysis fill.

After the clinic on Monday we popped up to the ward to say hello to the nurses, before we went out for lunch and then to the British Museum for a mosey round. That evening Trish took me out for dinner. We went to Sarastro on Drury Lane to listen to the live music and opera singers. It was very nice, but it felt a little strange not being with my Jasmine. That evening was the longest I had been without her since she came home from hospital. I missed her even before I said goodbye.

When I got home that evening poor Neil was worn out, because if we get behind in our routine of all the feeds and getting Jasmine into bed then she gets rather tired and crotchety and all the tasks of setting up the machine, sterile handwashes and putting her on dialysis, then sorting out medicines and overnight feeds, can take much longer. It is hard to concentrate with a wailing baby especially when you have sterile hands and can’t pick her up.

On Tuesday Jasmine’s nose had been bleeding from, we think, the NG tube irritating her nostril. I pulled it out and got a fresh one and popped it down the other nostril. Yesterday she spent most of the day tugging on it until she pulled it out whilst we were doing her PD dressing change. So, we carried on with washing the exit site and then Neil held her whilst I repassed the tube.

I seem to attract lots of advice as I wander about minding my own business. On Wednesday, a homeopath, whom I happened to sit next to when I was having a coffee and letting Jasmine stare out of the window, asked lots of questions about Jasmine and I thought I would try out talking about her and wished I hadn’t in the end. The woman decided that homeopathy could support Jasmine’s kidneys and help them function better. I mentioned that I am losing my hair and she said that that it could be a sign that I have kidney trouble. I begged to differ and diagnosed ‘having a baby’ as a the cause of my hair loss. She agreed and showed me her bald patches where her hair fell out after giving birth and is just growing back after two years. Not a great advert for homeopathy.

Two other old ladies stopped me this week. One in Boots, to ask me if I am breastfeeding, tell me that I should be, and how she fed both her children for six months. The second stopped me to tell me not to give my child drugs and that I should be careful. Careful about stopping and giving any mad old bat the time of day in the street. This goes for homeopaths too.

Our boiler packed up about two weeks ago and we have had such a kerfuffle trying to get it fixed. Tonight for the first time in two weeks we have hot water. It is bliss. Washing your hands for three minutes a go in an icy stream isn’t much of a giggle, not to mention all the other bits of our bodies that need a wash. I embraced nature and gave up showering a while ago but Neil was brave and carried on being invigorated in the mornings. Jasmine is one lucky girl to be so small and able to get washed with hot water from the kettle.

It is Friday already! What a week. On Tuesday we got our curtain rail up and then had an endless battle with the curtains we had bought and eventually had to take them back to the curtain shop next door to the Argos where we take things back.

On Wednesday we went to see the Grandparents Firth and had a lovely time in a pub by the Grand Union Canal, but got squashed in rush hour on the way back, so next time we will have to get organised earlier so that we can set off earlier. It feels like we are planning a major expedition everytime we leave London.

On Thursday the community nurse came round to give Jasmine her epo injection and us some injection training. We both practised injecting a spongey rubber ball with saline solution. So to give a subcutaneous injection we:

1. Prime the needle.
2. Divide Jasmine’s leg into four quarters.
3. Pick the outside upper quarter which has lots of fat on it.
4. Squeeze the fat together so that we have a nice big section.
5. Push the needle in at a 45 degree angle until the whole needle is in the flesh.
6. Slowly press the needle in to inject the epo and hold for 10 seconds.
7. Pull the needle out and press some gauze over it.
8. Cover with a plaster.

We have decided that since I do NG tubes, Neil can do the epo injection.

We were really tired on Thursday as Jasmine’s alarms went off nearly all night on Wednesday night and Neil was in his usual coma state so I beat him severely round the head with a pillow since he was supposed to be on night duty, thus waking him, so we were all shaggy-knacked (as my dad would say) for the whole day.

We have finally decided that there is no point him (Neil not my dad) being on night duty and I am the night duty queen now. Last night we all slept well and Neil got up early this morning. When I asked him what for, he said that he wanted to get started on all the chores. When I asked which ones, he said: “Opening the curtains.”

We went to Highgate today and we found ourselves passing the cemetery so we popped in to have a look at the various headstones: Karl Marx, George Elliot, and others (£3 per adult, can you believe it? Plus £1 for a map). It was nice though, as we fed Jasmine on a bench staring at the graves and it reminded me of home. My mother used to always take me to the cemetery on a Thursday night after we had been swimming for a wander round the graves. And once in Whitby she put down a tablecloth over a flat gravestone in the churchyard of St Mary’s Church up the 199 steps and we had a picnic on the gravestone.

Afterwards Highgate Cemetery we had a nice lunch. I had Eggs Florentine ( poached eggs was the only thing I really missed when pregnant) and a pot of tea and we sat outside. Jasmine enjoyed watching the world go by. There was a massive dog on the next table which kept barking and Jasmine looked on amused which made the lady dog owner say that she had never met such a lovely chilled baby before. I bet Jasmine was staring at her to force out the compliments.

For the past few days Jasmine has only vomited small vomits (less than 10mls) a couple of times a day and has been fine through the night. This is fantastic and will give her a chance to put on weight. She has now taken to smiling at everybody all the time. She gave the man who fixed our boiler the biggest, nicest smile ever – she must know how much we appreciated him giving us hot water.

I bought a yoga cookbook when I was pregnant as I like yoga and I had cravings for chickpeas and lentils. Neil wasn’t sure they were cravings as apparently I eat mad things when not pregnant. Now he has finally joined me in my madness and yesterday made a mountain of yoga kitcheree: mung beans and brown rice. Apparently, kitcheree is nice to eat when you have been fasting. However, if you have been stuffing your face with chocolates and shortbread for weeks, then it doesn’t taste of much at all, I can tell you.

I made a banana nut pie and we had lots of slices as according to the yogis, bananas increase calmness and humility. It is hard to tell if we are calmer or not, even if Neil keeps buying big bunches of bananas from the fruit man at the end of the street, but we are less tired and getting into a routine. And it is good. Yesterday, it was one of our busy days: the usual dialysis, changing her PD dressing, and drawing up medicines. And we managed to squeeze in some cooking and football.

Jasmine loves watching football, it must be the movement. She also loves looking at herself in the mirror when we are washing her. We tend to wrap her in a towel and hold her over the sink so that there is no chance of getting her PD exit site wet. She leans back so that she can get a good look at herself in the mirror and smiles at what she sees. Neil says that she takes after me.

Jasmine no longer vomits through the night as we feed her 25mls per hour over 8 -9 hours. We all sleep well now and she only begins to vomit around 6am. The downside of this, is that she vomits more during the day, but it is easier to handle when you aren’t tired. The next step is to figure out a way of stopping her vomiting during the day. She tends not to sleep much either during the day because she sleeps all night. But even when she needs a nap during the day she will fight it so that she cries with exhaustion and irritation at 7pm when we connect her and the machine fills her up with fluid. I have been getting into bed early too since Neil forces me to and then runs in and shouts ‘Lights out’ and wrestles whatever I am reading out of my hands. It is great fun and we never stop giggling.

Jasmine’s mucus comes and goes. Our latest theory is that because she has a NG tube her body produces mucus to fight this foreign body which is stuck up her nose. It came out again yesterday and I had to repass it. This doesn’t get any easier but I am so glad that I do it and we can get it over with in a couple of minutes. Being in control of our day is so good. Last night her alarms went off on her dialysis machine every couple of hours so we are a bit tired today – it seems that we can’t control everything.

Anyway, specially for Barbara, her weight today is 4.5kgs and she was 58cms (or thereabouts) at her last clinic. They increased the amount of calcium she takes as she hasn’t enough at the moment to make her bones grow big and strong. I had to laugh at myself the other day as we were plotting her height on a graph and she is on the 2nd centile, which means that if there were 100 people in the room, there would only be one person smaller than her. I felt depressed about this until I realised that small person would be me. Viewed in this way, she is growing well.

This week has passed by in a blur of DIY as we are still making shoe racks. This latest one actually holds our shoes and has freed up space in our hallway to put the buggy.

On Wednesday we went to Canary Wharf. Jasmine loved the shiny buildings and it was nice and sunny. She also loves the tube and stares at everyone, who then feel obliged to say how lovely she is. Again, she is so like her mother, Neil says that I am always squeezing compliments out of people. I didn’t think I stared people down on the tube to get them, but perhaps I do. I have had many a compliment on the tube.

On Thursday the nurse came round to give Jasmine her epotein injection and then the curtain man came round. He is going to fit us with some curtain tracks in our bay window. I hope he does come back to fit them as I am afraid I was overcome with giggles about having corded curtain tracks and imagined standing by the cords on a morning and saying: “I now declare this pod bay open”, as I pull them open. You could tell that the man thought we were mad and was glad to leave, and that was before we showed him the curtains we have bought.

On Friday we went to an antiquarian book fair at Olympia. We kept Jasmine in her buggy as we didn’t want her vomiting on anything as there was a first edition of Jane Eyre for £95,000 and we got to see books signed by Dickens, Wilde, and Fleming. She was the star of the show as the youngest person there and took yet more admiration in her stride. Afterwards we went to the pub and had a quick shandy before braving the tube home. My mum told me to stop telling everyone that we go to the pub all the time as we sound like a pair of lushes, but you have got to grab your beer drinking opportunities when you can.

I have had a couple of people say that Jasmine’s chair looks like a potty (my mum included). It is hard to tell from the photo but it is really comfy and spongy and supports Jasmine really well, as it is ergonomically designed for babies so that they can learn to sit upright. I am laughing as I type this as I suppose it does look like a potty and have started to wonder what kind of nutter people think I am. Would I really buy an oversized potty to put my daughter in? Perhaps I might have done, if I’d thought of it.

I have to stop here as Neil has started to cook more mad food in the kitchen so Jasmine and I are off into the bathroom to admire ourselves and practice our surprised but joyful expressions for when Neil gives us buckwheat and seaweed burgers for lunch.

Last week we tried a different type of plaster on Jasmine’s face for her NG tube. Instead of the cutey teddies we had a see through one. I didn’t like it much as it reminded me of the phantom of the opera face mask. It didn’t last long either and wasn’t as kind to her face as the teddy bear plasters which was why, when it came out last week, we rested her face for the day. From now on, she will be sporting teddies.

I am guessing that since I gave birth to Jasmine and Neil didn’t, I am always listening out for her in the night. The other night I woke up as she was vomiting and clambered across the bed to get to the cot (our bedroom no longer has floor to walk on). At this point Neil woke up and asked me if I had moved in his direction to give him a bit of a cuddle. I said that no I hadn’t I was just climbing over him to get to Jasmine to clean up her sick. He was on the cot side of the bed because he was supposed to be giving me the night off, but he was totally sleeping on duty and didn’t wake up any of the five times she vomited but he did snore very loudly. He didn’t get many cuddles that night, I can tell you.

Last night though was fantastic. Jasmine slept from 9pm, when her overnight feed goes up, until 5am and didn’t vomit once. I woke up at 5am and couldn’t believe the time. I checked the food pump, Jasmine, her sheets, and everything and couldn’t believe it. She was asleep, happy and vomit-free. She started vomiting around 6am but at that time I could cope as I had had plenty of sleep and Neil wakes up out of his coma and hears her when she is sick. I went to bed at 9pm too last night, which was great! I am going to do lots of that. I need my sleep.

Today we went to for our appointment at GOSH’s Renal Clinic. Jasmine had her weight, height, and head circumferance measured and her bloods taken. They were quite pleased with her progress and will ring us tomorrow with the blood results. We were there quite some time, as there were lots of people today all needing to be looked at, but not too many whom we recognised, apart from a teenage girl who remembered Jasmine from when she was on the ward too, so she asked if she could hold Jasmine and have a cuddle. She went away one happy girl. After our appointment we treated ourselves to a nice long lunch and came home late afternoon as it was raining too much to go anywhere else.

Jasmine has a new chair and can sit up straight in it and only leans to one side when I take (lots of) pictures of her. Her new chair is great but she doesn’t sit in it for very long as we think she is so cute in it we have to pick her up for cuddles.

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.

I spoke too soon. Jasmine vomited three times in the night: 1am, 4am, and 5am. And then at 6.30am it seemed as if the milk was flowing down her nose, into her stomach, and back out through her mouth. I switched the pump off, as I couldn’t face it anymore and I was knackered and the pump is so rubbish. I am going to do a user experience (UX) critique on it and put it on my technical blog as soon as I can write sensible things in a professional manner, as yesterday I told the community dietician that in my professional opinion it is crap. With a bit of thought (and you don’t have to be a UX consultant), the pump could really easily be improved, e.g.,

1. Don’t put the information button (which tells me how many mls before she reaches her target) next to the on/off button. If you must, please have luminous buttons which glow in the dark.
2. Don’t beep at me every eight seconds when I put the pump on hold – I am not a goldfish and would like to set my own beeping defaults.

Jasmine threw up just mucus before her 9am and then milk after it and her 12noon feed. So we had several outfit changes before we left the building. Her rhinestone jumpsuit is now in the wash.

She has been home three weeks today. To celebrate I took her to the baby clinic to get her 2nd set of vaccinations. She cried a little bit, but was generally very good. I cried more. They wanted to weigh her and I refused and there was a bit of a kerfuffle until I explained that her kidneys don’t work and having to say it out loud when I was very tired made me cry. I mentioned that I have to weigh her twice a day and all of that so could you write that figure down in the red book. No they couldn’t as she hadn’t been weighed there. I understood (and will write my own damn figures in the damn red book since it is just a record for me) but it just reminded me of all the silly things I have had to listen to over the past few days by people who are supposed to be supporting us, so I burst noisily into tears. Result: they let me jump the queue and get her jabs done next. They were very nice to us saying that they imagined that we wouldn’t want to hang about and we didn’t have to have a doctor’s exam either. Suits me fine.

Jasmine was brilliant for the rest of the day. No more vomits and was crying this evening when we put her down and I think she was hungry as she had missed some of her required amount. We have started her overnight feed early to catch up.

We spent what was left of the afternoon lying on the bed listening to the radio. No phones call – bliss! I popped in the beauty parlour after the jab clinic today to see what nice things I could use as a pick-me up. I can no longer wear nail varnish on my fingernails whilst doing sterile handwashes for dialysis so I might have either a pedicure or a full body massage. Alternatively, I could save my pennies and paint myself orange and run naked up and down the street to let off a bit of steam. I just can’t decide.