Jasmine Stalker-Firth

Last night Jasmine was a bit pukey and managed to throw up all over herself at midnight, and then when I fished her out of the cot, all over me. So we spent some time cleaning her up and then we settled down to sleep around 1am. Then at 2am, her alarms went off: ‘Low drain volume’, which means that her machine is having trouble getting the fluid back out of her peritonium. Sometimes this is because her catheter line has a kink in it, if she has moved. Other times, it is because the catheter in her pertonium can’t reach the fluid in there and we have to change her position. At 2am I couldn’t see a kink so I picked her up and held her until she had reached her minimum drain target of 250mls. I went straight back to sleep and then at 3am, the same thing happened again. Then again at 4am and 5am and 6am and then 7am.

Consequently, Neil and I were very tired this morning. I was so tired that I dropped a new PD catheter cap on the floor and had to get another one out and wash my hands. Then we had to go to GOSH as we had a 9.30am appointment, so there was no chance of catching up on our sleep.

Jasmine had her abdomen scanned. Today we saw her kidneys, her left one has more or less disappeared and her right one is small. We also saw her bladder and womb and lots of vessels and we could see the big catheter right in the middle of her abdomen. It was another one of those days when we get to know our daughter inside out.

After that we had our usual clinic session and Jasmine has grown and put on weight, which is good. Then Neil and I had our blood taken. They will use our blood to check its type and tissue and see if it is a match and if we can be considered as living donors for Jasmine. After a night of no sleep and seeing her abdomen on an ultrasound, I was a bit teary as I know we are working towards transplant, but it was the first time in a long time that it has been mentioned, and today it became real for the first time.

And it is strange, because even though we live amongst a lot of hospital equipment at home, and we plug Jasmine in every night to her artificial kidney which beeps and hums and ticks over whilst we sleep, we don’t really think about it anymore. We can go whole days where we forget that she has no kidneys and that she needs a transplant. It is odd that we forget and can go about our daily business, loving our girl, and then today all the fears and hopes and memories from our time at GOSH came racing back. And I was overwhelmed. We have come a long way since her birth, a very long way, but we still have a long way to go.

This afternoon we came straight back from hospital all sporting cool plasters (well via the pub and a pint and some chips) and we all went for a lie down. Neil woke up first and put Jasmine on her feed pump for her afternoon feed.

[Just a dietary aside, please skip if you are sick of me moaning: I am still really cross that Jasmine doesn’t like milk – or the taste of anything milky like cauliflower cheese etc., – and the dieticians haven’t an alternative solution. I know how dialysis and medication can replace kidney function because the doctors have explained it to us. So why can’t the dieticians explain what Jasmine’s nutritional targets are and come up with an alternative to pumping milk down her nose? Or at least explain it to me so I could come up with something myself? This is the last time I will mention it, because I don’t think it serves any purpose to keep going on about it.]

Anyway, when Neil came in later on to check on us (well Jasmine, as I am quite good at snoozing) Jasmine had vomited up her NG tube and the milk was pumping out of her NG tube, all over her face, and she was lying in load of vomit and I was fast asleep. So Neil had a big fit, woke me up, and was furious. I could sympathise with him or I would have done had I not been so tired and opened my eyes to see a red-faced Neil jumping up and down on the bed. He calmed down, eventually. But it just confirmed our reasons for not having her on an overnight feed, especially now as she likes to chew the NG tube when she gets her tiny mitts on it!

Jasmine is very clever. She pulls on her catheter line and when she doesn’t have her nappy on, she trys to peel the PD exit site dressing off her abdomen. She regularly reaches over her head in the cot to check for stray syringes to put in her mouth or to pull baby wipes out of the packet and wipe her face with them. She chews anything she can pick up and put in her mouth, and she regularly rolls about the place searching for her tubes to tug. She will also kick us when we try to connect her to her machine on an evening and squeals with delight when we disconnect her on a morning.

She is also starting to feed herself. She can hold her cup and will wrestle with you for the spoon when we feed her veggies. So we give her the spoon of food and she puts it in her mouth. We are not sure if she knows it has food on it, but she eats the food. It is a bit messy this way, but it works, and is less of a tug-of-war, and she is so cute, even when she has covered us all in carrots.

Tonight we have propped her mattress back up in the cot so that she is lying on a slope in the hope that she will drain more easily with the help of gravity. We have also taped the catheter patient line to her thigh to ensure that her wriggling won’t cause the line to kink. It is drastic but we are pretty tired and will no doubt be fighting over who brings whom breakfast in bed tomorrow morning.

It seems like we have been tidying our flat forever and done very little else this past week. We have had to get rid of another load of books and put lots of stuff in our new cupboards. We had just got everything straight on Friday when our dialysis delivery turned up – a whole month of supplies (25 boxes of dialysis fluid). It is great not to think about stock takes and deliveries for a month but the supplies take up a whole bedroom wall and sleeping between them and the new cupboards makes us feel like we are sleeping in an insulated fallout shelter.

After our delivery we went out for lunch at John Lewis and tried Jasmine out in some high chairs. So much choice! In the end we came away with a booster one that you put on our dining chairs and tie her in. Jasmine loved trying out new things and being carried about looking at TVs and baby toys.

As we were browsing round the store, a woman pushed her five-months old baby in a pram passed us and stopped to tell us how cute she found Jasmine. I was carrying her in my arms and this woman had a big stress that her own baby wasn’t being stimulated enough and she wasn’t a good mother since her baby was awake but lying flat on his back. When I saw her later on (Neil and Jasmine were investigating flat screens) she was holding the baby, but five minutes after that when I passed her again (I had been to powder my nose) she had the baby back in the pram and saw me and said, “Oh I picked him up, but he is so heavy I had to put him down. I did carry him though, I did, I did.” She seemed a bit stressed about it all, poor thing. We were just carrying Jasmine ‘cos she likes to see what is going on and it never occurred to us that we should have an opinion about what this woman was doing with her baby. Lately though it feels like everywhere we go we are in some baby olympics with mothers all competing for the most stimulated, active baby gold medal.

On Saturday we tidied up the flat (My Godfathers, it was neverending) so there was lots of activity for Jasmine to watch from the safety of her doughnut (which she got from her Auntie Claire and Uncle Iain and loves, thank you) and she watched the footy as finally the new season has started. We are today breathing a collective sigh of relief as we don’t have to tidy up anymore and we have footy to think about on Saturdays and Sunday now for the next 36 weeks. Fantastic.

Yesterday we had overhead cupboards fitted above our bed in the bedroom. It was a full day job and the man arrived at 8am and set about sawing and hammering for hours. We had dismantled our bed and cot and took everything out of the bedroom on Monday evening and set Jasmine’s machine up in the living room, so it was funny to camp out and see what it would be like if we lived in a studio. I am quite glad that we don’t. We were a bit squashed.

Jasmine loved it! She didn’t have to go to bed in a separate room and could watch our new Setanta Sports channel to her heart’s content. Funnily enough, she went to sleep more quickly and made less noise than she does normally when we put her in her cot each evening. What is all that about then?

I am not one to get excited about fixtures and fittings, but the cupboards look marvellous. They are very swish and have fitted lights underneath. We are moving all our stuff back in the bedroom this afternoon, as we are bored of camping. Even if we did lie on the mattress drinking Pol Roger once the cupboards were up.

I took Jasmine to get her Hepatitis B injections to escape the noise and got stuck in the doctor’s waiting room with a mother and her big six month-old baby. The mother was amazed to find out that Jasmine was the same age and kept saying things like: “She is so tiny.” “What a tiny baby.” “I can’t believe she is six months old,” like Jasmine was Thumbelina sitting in the palm of my hand instead of in her buggy. Then came the usual: “What is wrong with your baby? What is that on her face?” which I nipped in the bud. Then we moved on to:

Mother: Can she sit up? (points at Jasmine)
Me: Not yet.
Mother: She can (gestures at her big baby)
Mother: Can Jasmine roll over? (points at Jasmine)
Me: Not yet.
Mother: She can (gestures at her big baby)
Mother: Can Jasmine recite Macbeth’s last soliloquy?

Actually she didn’t say that last bit but if she had have done, I might have enjoyed our conversation more. As it was, I was exhausted with the competitiveness of it all and thrilled when we got called in to see the doctor. I tried to run away but the mother insisted on coming with us to open all the doors ‘cos we need loads of help being so tiny and all.

I was telling Neil when I got back and the nice man putting up our cupboards shouted through that he bet that the other baby wasn’t as gorgeous as Jasmine. He is my new best friend. And then when he was leaving he left us a little ‘touch up’ squirty thing so we can squeeze paint all over the flat where we are generally scruffy, especially in the hallway where we put up a mirror using No more nails and it fell off in the night taking all the paint with it. No more mirror, more like.

We had a lovely time on our holidays. Jasmine got to meet her Grandad and Aunties and Uncles and cousins and my cousins. And we got to show her off to everybody, which was lovely. Jasmine loved all the attention and was happy to sit on everyones’ knees.

Jasmine saw the sea for the first time, and had her first trip round a supermarket sitting in a shopping trolley. She loved both and I loved doing the traditional baby things. In the north-east when people see your baby for the first time, they rub the baby’s hand with silver for luck and then give her the silver. It was nice to finally get to experience this. Lots of people stopped us in the street and supermarket to say that they thought that Jasmine was beautiful but no one – not one single person – asked why she was wearing the NG tube. Lovely, lovely people – friendly, not nosy. It was good to be home.

Doing dialysis in a different place was good too. Things took a bit longer than usual, but it was manageable. A change can be as good as rest and now we are back in our own little flat, we feel rested and pleased to know that with a bit of preparation, the world is our oyster.

Today Neil gave Jasmine her first epo injection without any supervision. It was great and took about two minutes.

We decided to go on holiday and visit my parents. So I wrote a list of what we use per day:

• dialysis machine
• extension lead for machine
• 2 yellow 1.36 dialysate bags
• 1 green 2.27 dialysate bag
• 1 paediatric set
• 1 drain bag
• 1 mini-cap
• 1 sample bag
• 1 connector shield
• 2 mini-caps
• 2 alco-wipes
• tub of alco-wipes
• 1 bettadine scrub
• paper towels
• 2 tempadots
• blood pressure cuff
• KY jelly
• doppler
• spare battery (for doppler)
• screwdriver (for doppler)
• pair of scales
• 1 alco-gel handwash
• 3 packets of soft swabs
• 1 chlorhexidine
• 1 sterile water
• 2 cutiplasts
• 1 waterproof dressing
• 1 day of medicines
• tester strips for tube
• SMA
• vitapro
• maxijul
• calcium acetate
• tablet crusher
• tablet splitter
• feed pump
• giving set
• feed pump adaptor
• feed pump backpack
• 2 baxa syringes
• 7 * 20ml syringes
• NG tube spare
• teddy plasters spare
• duotherm plaster spare
• 1 sodium docusate 2.5ml syringe for PRN
• 1ml syringe of a calcidol from fridge
• table for recording daily results
• PD protocols
• clinic letter with latest info
• red book
• list of phone nos for GOSH et al.

Our dialysis machine sits on a small bedside cabinet and we keep lots of medical equipment in the drawers, so we took that too. It was much easier to tape up the drawers, knowing that everything was inside rather than figure out what we needed to take out and put in another box. It also meant that we had something to put the dialysis machine on when we got there.

Our clinical nurse offered to check the list and when she emailed back said not to forget to take Jasmine which made me laugh because at the rate we were going, it was a possibility.

Neil bought a car seat and I spent two days packing things into boxes and ticking things off my list and piling the boxes into the corner. Then we hired a Vauxhall Zafira which has seven seats which we folded down to make room. After we made sure we had all the dialysis equipment in, we stuffed in all the usual baby stuff like bottles, steriliser kit, nappies, baby wipes, clothes, bibs, buggy, bumbo, Mr Tag-a-long, whose first name we have decided is Arbuthnot, and a picnic (teapot, cups, thermos, teabags, milk, cheese and branston butties, crisps, fruit) and we set off on our jolly-days. We forgot to take any coats at all and so prayed for sunshine on the way.

I was worried because the car was an automatic. When Neil and I went to Hawaii, a few years ago, we had an automatic and one day I was driving up a steep hill to the top of the volcano on Kauai and some mad couple behind kept driving up my bum. I forgot it was automatic and tried to change gear to get us going a bit faster but instead I put us into reverse. The woman had a big fit and gesticulated in a rude manner when I pulled into one of those passing spots. Dear me! So I wasn’t looking forward to driving an automatic again.

But I needn’t have worried, it was great. It was like driving a big bumper car with one foot on the big pedal and made driving in and out of London and 250 miles up the motorway relaxing. I am totally into automatic cars now. Except actually, when we arrived to near where I grew up, I saw my cousin and was so excited that I beeped the horn, forgot I had an automatic and tried to change gear as I pulled into the side street where she was. I nearly ran her down (Sorry, Marguerite). I guess I am best driving automatics on the motorway where there is nothing to get excited about.

We weigh Jasmine every morning and every evening to check that she is not retaining extra fluid, so it is difficult to keep her weight gain in perspective and I get quite agitated, especially when she vomits a lot. So today I put this t-shirt on her after another vomit and noticed that it is quite small compared to how she used to look in it. Aha! She is growing – it used to come down to her knees. I am thrilled.

On Friday, Sarah took Jasmine and I out to lunch in Soho and showed us a good time. And on top of that, Jasmine got some lovely gifts: a fabulous flowery t-shirt from Sarah and another soft woolly blanket from her Nan (thank you very much).

Jasmine’s cousin Matthew is one-years old and having a party today. We don’t think about how much fiddling we do on a daily basis, it is our norm. Today though, it would have fabulous been to throw some stuff in a bag, tuck the baby under one arm, hop on the train and go to the party. Unfortunately, a baby on dialysis and spontaneity just don’t sit together and even a trip to the park requires military style planning. So I guess we will just have to have a little party of our own in Matthew’s honour.

The terrible wind and screaming episodes that Jasmine was having seem to have stopped, and her vomiting has reduced. We totally ran out of bibs this morning as there are 10 drying on the clothes-horse. So Neil wrapped Jasmine in a towel and left her vomit to her heart’s content. Poor thing. We have taken her back off her overnight feed and we get a great night’s sleep. Jasmine then wakes at 6am and I prop her up in the cot, so that she can cough up her mucus (NG by-product boo hiss!) and then I give her morning feed. This seems to work really well.

Yesterday she was so quiet all day – no screaming fits, just singing and being a happy baby. I found it all a bit unnerving. I had forgotten these last few weeks, that cool non-screaming baby is her default mode. Neil said that she is calm and easy-going just like him and not like her mother, which is a bit rich coming from a man who after cooking dinner last night, did a lap of honour round the flat and then stood on a yellow-pages podium whilst I presented him with a medal. Dinner was tasty though: egg fu yung, but there was only a main course, unless of course you count the beer and crisps aperitif he organised for us. He even got me a bottle of Theakston’s Old Peculiar. Ahhh!

We are now the proud owners of an epi-pen. So if you ever go into anaphalatic shock after dinner round ours, we can stab you in the leg and phone the paramedics. Fantastic! We are very responsible hosts.

We came home from GOSH 12 weeks ago today. Our girl is bright and beautiful and we love her.

Yesterday we went to GOSH clinic and they seemed pleased with her progress and they said that Jasmine was looking well. So Neil and I looked through our old photos and we can see a big difference too, she does look a lot bigger than when she was in the hospital. Jasmine had her bloods taken and the doctor checked her for hernias (we asked as I was just curious. I know they are common and Jasmine has had them before, but I wouldn’t know how to identify one so I thought I would just get her the once over).

We did several rounds of ‘Jasmine not taking her milk’, as I don’t want to give up on this yet. They were very nice and patient with me and the doctor gently explained that it was unusual for Jasmine to have fed orally for so long and now that she seems to have given up feeding she resembles a baby in renal failure. The most important thing is to get her food into her so that she can grow well. She is way down at the very bottom of the growth charts so she has some catching up to do.

The doctor added that in her experience, renal failure babies all like strong tasting savoury foods and hate sweet things and once she gets older Jasmine will love marmite fingers. I love marmite fingers too so got a bit excited at this point. It is true though, Jasmine loves her Ranitidine which is a horrible mouth-numbing antacid medicine which tastes just like mouthwash. The doctor also said that Jasmine won’t have any problems eating in later life since she has fed so well for this long. And again, it is unusual that she is enjoying some solids.

I am disappointed but I will go on giving her food and keep trying her on milk. Today so far, she hasn’t wanted any milk at all, so I have given her 300mls by tube and she has another 200mls to go. But she has eaten Farley’s rusk mixed in water and also she has had some spinach, parsnip and basil puree. She enjoyed both and smacked her little chops. It is just milk and the sweetness she doesn’t want, as I tried her on a banana the other day and she hated it. So I am currently pondering how best to mix her milk with things which are savoury in order to encourage her to want to drink milk. These Farley’s rusks might help as I got the reduced sugar ones and they weren’t too sweet at all. Neil and I had some and they are very good with a cup of tea.

It has been so hot these last few days that Jasmine has been spending most of the last few days just wearing her pants. We keep taking her dress off to cool her down. We find these little pants really useful and have lots of pairs. She wears them over her nappy so that we can tuck in PD catheter into them. Currently she is lying in her cot just in her pants, sound asleep clutching her Mr Tag-a-long.

After the clinic yesterday we went to the pub for beer and chips, which was fantastic, and then we went to the Hadrian exhibition at the British Museum, which wasn’t. It was so hot that I carried Jasmine around the exhibition in my arms. She was unimpressed about the whole thing, but didn’t mind people making a fuss of her – as per usual.

Jasmine doesn’t need another check up for three weeks which is a first. Neil said that he was a bit alarmed about not going back for three weeks. I don’t feel the same way, which is a bit weird, as normally I worry about everything but knowing that GOSH are just at the end of the telephone is very comforting. They are, as always, a brilliant bunch of people, and it makes me cry to think about how much they do for Jasmine.

When Neil read Christopher Alexander’s Nature of Order we spent a long time discussing how Christopher Alexander looks just like Neil’s Uncle Alastair. This weekend we managed to get some proof. So if anyone ever need a Christopher Alexander lookalike to impress their architecture friends at all social events, just let us know.

We have had a lovely busy weekend. Jasmine is quite the party girl. Our socialising started on Friday evening when Trish came round for dinner. I had spent the day trying to decide what to cook but in the end burnt myself out looking through ‘Good Housekeeping’ in between dialysis and lying about complaining about the heat so that poor Trish had to make do with pizza and salad. She was very nice about it and we all had a lovely time.

The following morning we got up early and I was on dialysis duty (Neil and I take turns). I was on fire: I disconnected Jasmine, got rid of all the stuff on the machine, changed Jasmine’s sterile PD dressing, then set up the machine for the evening time. It was a personal best of about 55 minutes. After that we had breakfast and went off to the Grandparents Firth.

The neighbours came to meet Jasmine as they have been following her progress here (Hello to the Bunce Family) and then we wandered inside so that Jasmine got to meet her second cousins and Great Aunts and Great Uncle for the first time, who were all very kind and brought her lovely gifts: Jasmine loves her new Mr Tagalong and chews him constantly as he small enough for her to clutch on to all the time. And as soon as the weather cools down, Jasmine will be snuggling under her beautiful new quilt. It was a baking hot day so Jasmine was irritable and everyone was brilliant pushing her up and down the garden until she went off to sleep. We had a lovely time and had to leave all too soon to come home.

Today we went for a delicious lunch at Aarti’s and Jasmine got to meet her family, who were very kind and gave Jasmine a beautiful dress. Aarti’s Mum and Gran were very lovely and patient and spent ages nursing Jasmine who was irritable again with the heat. Aarti’s Mum finally got Jasmine to sleep lying in front of a big fan. We had a lovely afternoon and were sad to have to say goodbye and come home.

I set up the machine tonight in our flat whilst Neil and Jasmine waited outside in the cool breeze of our courtyard. It was absolutely baking as you have to keep the windows shut during sterile procedures. They weren’t in any rush to come in and when they finally arrived, Neil admitted that he had bought himself a nice little can of gin and tonic and enjoyed a little cocktail hour chatting to his daughter whilst I was boiling in the flat. I admire his thinking.

We got Jasmine on earlier than usual tonight as we have to go to GOSH clinic tomorrow so that we can see how she is doing. Jasmine is over 5kgs now and her blood pressure seems relatively stable, so hopefully this is proper baby weight and not fluid. It is difficult to tell the difference so we will have to wait and see. Jasmine is still refusing to drink her milk so we are feeding her using the pump – a bit depressing. However, she enjoys her vegetables and sips of water.

A man on the tube asked me what was wrong with Jasmine today and I gave my don’t want to talk about it if you don’t mind answer, but he did mind and looked really offended. I felt terrible for about an hour afterwards but probably less terrible than if he had started asking a million questions about kidneys. Mmm! I need to think about a better answer.

On Monday we went for our breakfast in Highgate. It was very nice. We went in Weatherspoons where they serve quorn sausages, which was very exciting. I had one of those and an egg banjo and Neil had a bacon butty and pots of tea. Jasmine took all of her feed and we were thrilled and then we wandered around the park and had a lovely time swinging each other about.

Alas the feeding well wasn’t to last. We have tube fed Jasmine most of the time since then. It is all getting a bit stressful. She will eat solids and drink water, but doesn’t want anymore milk. So now we have her on a continous feed, hooked up to her feed pump, to get this milk down her. I have spoken to the dieticians many times but they don’t have any solutions. Jasmine is in renal failure and according to them all babies in renal failure don’t feed. So, they treat her like a baby who doesn’t feed and has never fed and that is it. This approach has worked for other babies under their care, so it works for Jasmine.

She is sitting in her buggy puking and spluttering as I type this and I feel very tired and extremely violent. Perhaps I don’t understand anything at all about babies and feeding but, I just don’t believe that a baby, even one in renal failure, who fed perfectly well would overnight just stop feeding altogether, especially since it coincided with yet more feed changes. Her SMA mix is 250g of SMA to 550mls of water and on top of that we add three scoops of maxijul and one scoop of vitapro. We give her 500mls only. It is very sweet and would make me puke if I had to drink it all day.

Yesterday we put her on the continous feed all day as we were really tired. We went for a picnic in the park and then for a wander about near the Arsenal stadium. At one point Jasmine was a bit vomity and full of wind so I had her on my shoulder and the feed pump in a pack on my back and a woman stopped me to show me her daughter. She told me that her daughter had been tube fed for a year and then had a serious operation and now was fine. Her daughter looked big and happy and about six years old. This was very encouraging and very kind of her.

Today we are going to rest and regroup and then tomorrow we will start tinkering again, as we have a few new ideas up our sleeves.