Jasmine Stalker-Firth

I went on strike last night. I couldn’t face doing another thing and Neil had to take over when I downed tools and went to bed. I am ashamed to say that I was feeling sorry for myself. I didn’t follow my own advice about sleeping, eating and following a routine and got a bit overwrought. We were late getting Jasmine on her machine and into bed which made her overtired. She was fighting sleep and Neil and I had a bit of a bicker in the bedroom and Jasmine threw up. Neil made me laugh at this point by saying, “Oh no Jasmine, it’s not your fault.”

This morning after a good night’s sleep I felt much better. Being in the doldrums is such a waste of time, I am not doing that again. And poor Neil is knackered as he went on vomit-mopping duty during the night. Although, he kept sleeping on the job and needed supervision. You just can’t get the staff nowadays.

Yesterday, Jasmine and I went to the clinic at GOSH and Jasmine had her bloods and other checks done. Her blood pressure was high again whilst at the clinic (130) so they suggested putting her on stronger dialysate. However, last night when it came to putting her on dialysis her blood pressure was too low (78) so we left her on her usual program after much debate and phoning the ward and taking her blood pressure a million times.

Today I was doing random blood pressure checks and it was a bit all over the place: 90, 98, 74, 60 and then tonight it was 100 so we put her on the stronger combination. At the clinic they suspected that she is retaining fluid even though she doesn’t look like she is and her blood pressure is one of determining factors – hence, my checks. They also changed her medicines and the amount of fill fluid during dialysis. So with these changes I felt a bit lost. Routine makes me happy (never thought I would ever hear myself say those words) and even little changes seem to knock me off kilter. Although, I have less medicines to draw so that is one good thing. And she is vomiting less during the day.

Yesterday was also the first day that I was by myself at home and at the clinic so I had time to think about things. I had been warned whilst still in hospital that this might happen. In the hospital you feel normal as you are surrounded by people in the same situation but outside you realise that you are not ‘normal’ (if there is such a thing) as people look at you all pityingly (mainly ‘cos of her NG tube – cheeky buggers) and then once alone, you have time to dwell on less positive thoughts.

Today inbetween blood pressure checks I was doing a fluid balance – less glamorously put, I was weighing dirty nappies to try and figure out how much urine Jasmine outputs with respect to how much goes in feedwise. I am still not sure and might have to have another go another day.

My mate Wayne came for a visit and was highly amused when Jasmine pooed on the settee whilst I made a hash of changing her nappy – I was totally distracted by this nappy weighing business. It was nice to have Wayne here as I got to chat about other stuff and he got to see how we go about doing sterile PD dressing changes. Jasmine was mesmorised by him and was hanging on his every word about C# and Java, until she got distracted by her feet and was waving them about now that she has figured out that they are connected to her.

Her eyes are changing colour and are now a blue-hazel whereas before they were deep, deep blue. She goes to sleep when listening to Stan Getz but smiles a lot during Charles Aznavour. When Neil came back the other day from the gym she started cry and he reckoned it was because she was forced to listen to Charles Aznavour and that would make him cry too. But I know that really she was upset that we had to stop dancing because it was time for lunch.

Jasmine did a bit of vomiting in the night and then this morning was doing her impressions of Darth Vader. Poor thing has lots of mucus which we have decided is the thing that is making her vomit. When we aspirate her tube loads of disgusting snot comes back. It must be just sitting in her tummy making her feel sick. We propped her up in the cot by putting the cardboard triangle that was previously under her underneath the mattress and it works well. She has a comfy bed and no longer slides down the cot.It was Neil’s turn to lie in this morning but he didn’t really get much of one because of the racket she was making so in the end he got up when I disconnected her, just before the nurse arrived to give her an injection.

This afternoon Neil spent ages putting together the shoe rack. It looks great now it is together and is just the right size for dialysis equipment, but it was a bit of a torturous process so Neil was a bit cheesed off. I seemed to spend most of the afternoon taking things in and out of the washing machine. Then it was time to change her PD dressing and set up the machine and plug her in. And now the weekend is over and we are knackered. I am so going to get to bed early one night this week.

Our flat looks great though – no big boxes around the place anymore – we have space for the next delivery and we will start all over again trying to find places to put things.

Before Grandma Stalker left she figured out how to strap Jasmine into the buggy so here she is looking like she is about to parachute behind enemy lines wearing her strawberry beret.

We have discovered that shoe racks are really useful for storing all kinds of medical equipment when you don’t have a lot of space. They are not very deep and can fit into awkward spaces. We are also discovering that it doesn’t matter how often you do the washing there is still a big pile of washing to be done.

This morning Jasmine pulled her NG tube out again and then this afternoon when I decided that it was ok to leave her wearing her bib like a superhero during a nap, she was sick down her front. I think it was the excitment of watching the FA cup final. She was sitting in front of the TV, staring at it as if she was following the action. She is really funny.

I didn’t install webstats on this bit of my site as I didn’t think it was appropriate. Now I am wishing that I did because this evening I was looking at the webstats on my technical blog and someone had ended up there after googling: ‘How to look after your jasmine.’ I am wondering if they found something useful.

My mum went back today so I was a bit sad as we waved her off at King’s Cross. It was really nice having her here – a definite case of how to look after your Ruth. Our flat is really tidy as she kept hoovering and cleaning things everytime my back was turned and she kept telling me to put Jasmine down – for my own good of course, but I can’t put her down just yet.

This afternoon, Jasmine and I went to the doctors so we could register her. GOSH have been faxing them all sorts of prescriptions ever since she left so the receptionists made a lovely fuss of Jasmine and knew who she was already. Then the company who provide our dialysis equipment rang up for a stock check. We use a lot of stuff everyday.

We have had her home now for over a week. Last night she slept right through the night without being sick and today she took all of her feeds without me having to put them down her tube. This evening I set up her machine, we changed her PD dressing, connected her, and drew up her medicines in less time that it took during the first few days. I believe we are getting the hang of things and are finding more time to enjoy her company, which is just fantastic as she does something new everyday. This evening she put her hands around her bottle as I was feeding her as if she was holding it. Last night, she cried to let me know that she was too hot.

At the hospital we gave Jasmine a dummy because a) it soothed her and b) it was good for her to keep sucking and feeding orally, which is something that renal babies can forget to do as they have difficulty feeding. However, she has given up her dummy now as she much prefers chewing her hand. If you give her the dummy, she will spit it out in order to chew her hand. At first we thought that she did her handchewing because she was hungry. Now we have decided it is a comfort thing as she chews it before feeds, after feeds, and when she is tired.

I still can’t believe that she is ours and is home with us. To celebrate, we are going to lie about the place this weekend admiring each other.

We had a lovely quiet day today. It was the first day I didn’t feel like we had lots to do since we got home. It was great. Grandma and Jasmine enjoyed lots of cuddles and because it was rainy outside we spent most of the day at home drinking tea and generally having a good time. Jasmine still has lots of mucus and is a bit vomity but hopefully that will clear up as colds do.

We are still experimenting with Jasmine’s sleeping arrangements because she needs to be on a gentle slope to ease her vomiting. I am so glad we bought a really expensive mattress for her cot just so we could put some cardboard on the top of it to prop her up. Any ideas on how to stop her vomiting through the night would be gratefully received. She has improved a bit, which made Neil say that he was pleased Jasmine had slept all last night and not vomited once. Unfortunately, Neil was talking about himself – he was fast asleep when I had all the lights on so that I could mop up sick and trampoline up and down on the bed.

The community nurses arrived this morning to inject Jasmine’s dialysate bags with heparin. They donned their sterile gloves and plastic aprons and performed the operation on the kitchen table. My mum was in the other room with Jasmine who was hungry, poor thing. I had forgotten to get her milk out of the fridge and once the nurses were in full injection flow we couldn’t open the door. Jasmine enjoyed her bottle once she finally got it and will probably be really glad when she learns to talk and can ask me for things.

This afternoon we went out to enjoy the sunshine again and when we arrived back Jasmine’s Auntie Zoe was sitting outside waiting for us. Jasmine was delighted with her new Pooh bear and looks forward to feeling and squishing all the different materials on it. She showed her appreciation by promptly throwing up on Zoe.

We had dinner early tonight before Jasmine was on her machine so she sat on the settee and watched us all tucking in and got quite upset at not being the centre of attention. So, we made a fuss of her so that by the time we got her to bed and on her machine she was overtired and took longer to settle down. She was just dozing off when the machine started to alarm so we had to pick her out of the cot so that she could drain more. She was a bit cross about being disturbed – quite rightly so. She took another little while to settle back down but now she is snoozing quite happily.

I am going to trim my fingernails tonight – something I have never had to do before. My nails have started to grow really long and look great for the first time in my life. Unfortunately, performing dialysis duties means that a) they get in the way, and b) I can’t wear nail varnish. Isn’t that typical? I will just have to do my toenails instead.

Leaving the hospital I thought that life might take on a slower pace, but so far I haven’t noticed that change. Yesterday we got up early and got Jasmine ready and took her down to GOSH as an outpatient for the first time. Jasmine had her bloods and observations done and then when the nurse inspected her PD catheter exit site, she did the sterile routine and dressing change and saved us a job. Fantastic. We recognised some of the other parents at the clinic and then after the clinic we went upstairs to our old ward to say hello. The ward was business as usual: lots of patients and busy nurses.

After that Jasmine and I wandered up to Kings Cross Station to meet Grandma Stalker and then we hopped on the tube home as the health visitor who normally comes to see newborn babies came round. She had a pile of leaflets on what to do if you are worried about breastfeeding, or if your baby cries – normal worries that I don’t have. The GOSH nurses have done a great job: Jasmine sleeps through the night and only cries if she has a dirty nappy or you are holding her in a position she doesn’t like. The rest of the time she is very chilled and sits about watching the world.

Last night as we did our usual routine of putting her on dialysis and then wandering in and out to admire her at all stages through the night, we saw a fibrin in her tube. We took a picture of it, as it was weird (as are we). Fibrins are often found in the peritoneum and aren’t anything to get worried about normally, just when you are on dialysis. They can block the line and stop dialysis working properly and need to be treated by injecting the anticoagulant Heparin into the dialysate.

By the time we had drawn up her medicines and mopped up her sick we got into bed quite late. We were up early mopping up more sick and fiddling with the food pump which is the most annoying thing, beeping in the night and generally not being very clever. I had just got Jasmine off her machine this morning when GOSH rang up needing her observations, which is something they do when you first go home, and then the community nurse arrived. She gave Jasmine an epoetin injection to prevent anemia.

Grandma, Jasmine and I went for a walk in the sun this afternoon as it is boiling, before coming home later on to speak to the dietician about changing Jasmine’s feed, and the clinical waste collection people, and the community nurse about when she is coming next. Lots to do everyday to get ourselves organised. Poor Grandma had to cook the dinner and hoover round as inbetween phoning people up and feeding Jasmine and changing after her being sick, I didn’t have time to do anything else.

Hopefully things will calm down soon so I can drink more cups of tea whilst staring at Jasmine and talking to my mum.

Neil put Jasmine in the sling this morning a different way up now that she is older and can almost hold her head up by herself and proceeded to potter round the flat making bread and breakfast for me. I had a lie in and he took charge which was lovely as I didn’t get to bed early enough last night and then I was overtired and fretting. Fretting does no good and the best thing to do is to get some sleep and eat well. Soon I will add exercise to that list as I have put on more weight since the birth which is annoying. I know why – all those lattes and flapjacks at the hospital – now none of my clothes fit as I bent over on the ward the other day and ripped my combats which were a bit snug. Now I will have to buy more clothes and I really hate shopping. So today we are all having the day off clothing and are sitting about dressed in nappies (Jasmine only) and vests.

It is so hot! We should go outside and make the most of the weather but it is quite nice to lie about and enjoy this bit of time as Neil goes back to work tomorrow. It is not quite time for the footie yet, but it is good listening on the radio footie weather – the last games of the season in the premier league which is a bit sad. What will we do next weekend?

Jasmine threw up her 12 o clock feed and so we had to feed her again as she got hungry and started to cry. She is snoozing away on Neil’s lap as he reads the paper. Later today we will have to get organised as Grandma Stalker is arriving for a few days tomorrow afternoon. In the morning we have to go to GOSH for our first outpatient appointment and then we have our health visitor coming round. It is all go!

One of the nurses from the ward rang earlier to see how we were getting on and to get Jasmine’s figures: weight, blood pressure and temperature before and after dialysis. It was nice to chat to her and it was nice to get the phone call (we got one yesterday too) so we know we have someone we can talk to if we get worried about anything.

Jasmine was sick around 6am and at 7am she pulled out her NG tube. I was a bit annoyed with myself as I had seen at 6am that it was a bit loose and instead of dealing with it there and then, I lay back down and thought that I would sort it out later. If I had just restuck it to her face at 6am, at 9am I wouldn’t have found myself repassing it down her nose and making her upset. Still hindsight is 20/20.

She was a bit cross most of the day and quite rightly so. If it wasn’t enough that it was hotter than hell all day outside and in, I had already stuck a plastic tube down her nose and into her stomach before Neil gave her a bath which annoyed her. And then, we changed her PD dressing. Then her Grandparents came round so we were passing her round for cuddles.

Later we went to Mimi’s party. We are now the annoying folk who turn up at 5pm and get in the way instead of arriving at party time. Mimi and Ben were really nice about it and didn’t even make us help with the preparations. Mimi gave Jasmine lots of cuddles. We left just as she was due a feed (Jasmine not Mimi) as we didn’t want her throwing up on their nice settee.

After her feed we wandered along to see Chris and Lorna in The Regent. Unfortunately it was 7pm at that point and we were standing at the bar, Jasmine in arms, trying to order beer when we were asked to leave. Lots of people were staring and it finally dawned on us that it must seem a bit shocking to have a small baby in the pub. We had only popped in for a swift pint and a quick hello as we had planned to get back for 8pm to put her on her machine. But it must have looked pretty bad, especially as I was quite tired at that point and giggling a bit. They must have thought we had been on an all day pub crawl with her. On reflection, six months ago if I had seen a couple come into a pub with a small baby in the evening I would have tutted and been outraged too. Now I realise that we don’t know the half of what goes on in other peoples’ lives. The barman was very nice and said that it was the law and we could come back another day in the afternoon and no we couldn’t have beers to take outside!

Well and truly barred, we sat on the wall outside across the road from the pub and fed Jasmine the rest of her feed through her tube (ignoring the shocked stares of passersby). She was doing ok and even got some wind up so we felt safe to hand her out for cuddles when everyone turned up but alas she threw up, up the wall, so it was time to leave.

Got back about 8pm and popped her on her machine, but the excitment and heat of the day was all too much so she took ages to settle. What we learnt from this was: it is good to get ready before you go out as you only have five minutes sterile handwashing at that point thus preventing a wearing time of a cross baby and 15 minutes of sterile handwashing before all the other procedures. And also, it is good to have left-over curry from the the previous evening so that you don’t have to fiddle on cooking dinner when you are a bit worn out with it all.

We fed her more milk around 9pm as she was too hungry to wait to get hooked up to her feed pump and then she went off to sleep and was snoring away until 5am.

Friday was a bit more relaxed as we got ourselves organised before we went out to the pub. We originally went to Highgate to wander about and go for a coffee but it was so hot we ended up in The Flask and had a nice big pint each of Franziskaner. Jasmine had milk. After that we wandered back via Argos to take back some of the stuff we had bought on Thursday, as it is not until you try things out that you find your ideas are a bit mad.

The evening was quite relaxed and we managed to get to bed before 11pm so that when Jasmine began her night vomiting at 2am it felt like we had had a good sleep and were ready to hop out of bed and clean up.