Jasmine Stalker-Firth

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.

Jasmine and I left the house this morning at 11am to go and see our lovely doctor. She was supportive as always with lots of practical advice, unlike the community nurse who keeps coming round and telling me that I am going to get very tired, down, and depressed and need respite care. She says it like a mantra. When I imagine her saying it, I always picture her rubbing her hands together with glee. The reason she was so late last week was that she was sitting in her office typing a letter. Such is life!

Today, Neil and I asked for training on how to give Jasmine her weekly injection. We start training this week.

After the doctors, Jasmine and I went to the V&A. It was lovely and relaxing. The first time in days I felt free and away from it all. It didn’t last long, another community nurse rang up, followed by the community dietician, and then later another nurse. Eventually, I had had enough and told them that yes, I do feel tired, down and depressed and need respite: from them.

Jasmine loved the Robert Adam section as it was full of red and gold. She also loved the cafe downstairs with the big balls of fairy lights. She stared at them for ages and got lots of compliments from passerbys, including the Les Dawson Cissie and Ada ladies on the next table who thought I couldn’t hear them when they were saying in a stage whisper: “Look at that tube in her nose, she must be really ill, poor little mite” and pointing at their noses.

I feel very tired tonight. All this care and attention is exhausting. Jasmine only had a couple of small vomits in the night last night and then this morning a little mucus vomit and has been fine all day. I am thrilled. We have been tinkering with her feeds in the night and during the day to hit on a balance that she gets her full calorie/fluid total but doesn’t vomit it up because it is just too much for her. I spent a lot of yesterday with a calculator trying to figure out optimum mls per hour over 24 hours. So we will just see how we get on, renal babies vomit a lot so today’s result is spectacular.

So it was raining all day today so we stayed in and have done all our chores on one of our busy days (bath, dressing change, dialysis, medicines, feed preparation). Nothing new to report today, we are just enjoying time together as a family and Jasmine absolutely loved watching The Sound of Music.  She couldn’t take her eyes off the television.

It was raining today so we stayed at home and relaxed.

Yesterday was what we call a ‘busy day’, when we have to change Jasmine’s dressing on top of setting up her machine, connecting and disconnecting her, and drawing up her medicines. It didn’t feel busy at all as we did everything in the morning and wandered about in the afternoon, enjoying the sunshine. The more practice we have, the easier everything gets. I am even really into the three minute handwashes – it is like having a mini-meditation. And the good part about changing Jasmine’s dressing is that we can give her bath beforehand, knowing that if we get her dressing wet we will be changing it. Jasmine enjoys her bathtimes.

She is able to do lots more nowadays. She tries to hold her bottle sometimes when you feed her and reaches out for things and wraps her hands around them.

Last night, she reached for face and pulled out her NG tube. She must have been working at it for a while as it was taped down good and proper. Tonight, she vomited it up, poor thing. So we have had two days of NG repassing practice. It gets easier each time and is better than going down to the local A&E, which we would have had to do if we hadn’t had training. Especially since she was on her dialysis so disconnecting and getting organised to go there and then probably waiting a while, would have been a real drag. At home we repassed it in a couple of minutes. It is great to have some control over things and just fantastic to be able to take care of our baby girl at home.

I had one of those days today which made me feel that if I had better control over myself then I would not get so worked up, upset myself and spend the day in a tizzy. I should take a leaf out of Jasmine’s book as she was sitting there all day, her usual happy self, watching me get my knickers in a twist.

Jasmine is into her Baby Einstein in a big way. She loves the links (thank you, Christine and Dick) on her buggy and reaches out and touches them a lot and licks them when she is hungry and falls asleep with her hands stuck in them. She also loves her Uncle Andy’s underpants on the cot and goes to sleep to the music.

The day started early, Jasmine vomited at 5.30am and then the food pump finished at 7.30am and then our dialysis delivery arrived at 8am. These guys are brilliant! They arrive when they say they will and deliver what you need and find their way to your flat carrying lots of heavy boxes.

The community nurse rang up at 9.30am saying she would be there at 10am. She arrived at 11am and had forgotten some things. She said she would be 10 minutes and came back an hour later. She finally left at 12.30pm.

Then Frenesius, the food pump delivery company, didn’t deliver what they said they would (giving sets which we put milk in and connect to Jasmine’s NG tube for her overnight feed) so I had to phone them up and the woman on the phone couldn’t be bothered to understand what our surname was and asked questions about my order which demonstrated that she had no idea about what her company supplies. At this point I was quite cross and went downstairs to bollock the concierge for signing for two items when we had only received one. The concierge was quite contrite so I went back upstairs and bollocked Frenesius again. They are sending out another delivery tomorrow. I will believe it when I see it.

I unpacked my shopping which I had dragged all the way back from the supermarket and realised that the checkout operator hadn’t removed the security tag from the bottle of wine that I had bought so I will bloody well have to return it. My Godfathers! It really was the last straw. No wine.

So, Jasmine and I had to watch Hairspray to calm my nerves. Jasmine was her usual chilled self and enjoyed the catchy tunes. By the time I was calm, it was later than usual to put Jasmine on her machine. She was tired and cross and had a temperature (37.6). I had a melt down for ten minutes until I pulled myself together and took some deep breaths and Neil took over and put her on. We waited an hour and her temperature had gone down to 36.4.

I really must start doing my yoga again as it has fallen by the wayside since Jasmine came home. Yoga will be good and not only for my nerves: I tried a dress on today and it wasn’t very flattering at all. I am chubby round the edges and felt a bit down about this so I stuffed my face with lots of lovely chocolate caramel shortbread to cheer myself up.

I am sitting in the bedroom typing this with a nice glass of red wine. Jasmine is snoozing in her cot. We have bathed her (as she was a bit crusty from all the vomiting), changed her PD dressing, and put her on dialysis. And this feels like the first time I have sat down all day (which just isn’t true). It is lovely sitting in here. Jasmine is peaceful and the room feels really nice. Neil is in the other room on a conference call to America for work and before it started I got the chance to speak to his very nice colleague Leonardo (Hello Leo!!).

So, we have had Jasmine at home for two weeks. It has been fantastic. Last night, whilst congratulating ourselves about it and doing her observations, we discovered that Jasmine had a temperature (37.9). Aargh! If Jasmine ever runs a temperature and is vomiting during the day we must take a sample of her peritoneal fluid to the hospital to test for peritonitis. Because we are using the peritoneum as a big kidney, she is at risk of infection. So, taking a sample of fluid enables the hospital to test it for her white cell count and see what is going on in there. If the cell count is raised she would have to go into hospital and spend 48 hours on continual dialysis. And in a worst case scenario of serious infection, her catheter would have to be removed and we wouldn’t be able to use the peritoneum at all.

After I had lived through the above scenario and lots of others in my mind, her temperature came down – it must have been due to the hot day. It was boiling in the flat and Jasmine and I had had a lazy time lying on the bed listening to Radio 4′ Listen Again on the internet and discussing at length whether we thought Cherie Blair’s autobiography serialised on the radio was any good (we didn’t think we would be rushing out to buy it). So, Jasmine must have just been a bit hot when we took her temperature. Neil and I didn’t believe it was that simple and spent the evening (in between watching the footie and John Terry crying, I ask you) taking her temperature and bickering amongst ourselves about whether we were doing it correctly. Six temperature takes later we were satisified that she had just been hot and we didn’t need to rush down to GOSH.

Instead Jasmine and I went to GOSH today as I forgot to pick up her prescription medicines on Monday – too busy chatting. So we sat about in the pharmacy and received lots of compliments. I just can’t ever hear too many times how gorgeous my girl is. Then we toddled up to the ward to say hello to everyone. It was lovely to see the nurses and have a chat (I miss my chats) and they said that she had grown and was looking well.

We got back this evening and I tidied up, as this morning I did some reviewing for the EPSRC and was very pleased to have done something with my brain and to feel part of something. The downside of reviewing was that I left the flat in a tip as I wanted to make sure I got to the pharmacy in time so when I got back I had to fiddle about for ages straightening things up and hang up yet more washing instead of flopping on the couch. And then Neil came back early so we could do her PD dressing before his conference call.

Tomorrow we will get all our deliveries and the community nurse is coming round so it will be good to get an early night as the deliveries could start at 8am and no doubt Jasmine will be awake in the night. Last night she woke us up at 1am crying really loudly just because she had had a poo. What a drama queen. When she finished she went straight off back to sleep leaving Neil and I wide awake, dirty nappy in hand.