Jasmine Stalker-Firth

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.

Jasmine has now been home nearly 48 hours. It is fantastic. She has a a rock and roll lifestyle lying in pools of her own vomit and urine and taking lots of drugs. We are the lackeys who clean up after her. I am just waiting for her to throw the TV out the window. She is so cool and has just vomited as I type this. Luckily Neil has taken charge of the cleaning up operation.Yesterday, we felt like we had so much to do we forgot that we were actually doing it for Jasmine as our whole day was spent doing things and not nursing her half as much as we would have liked. This was how our day shaped up:

Woken up at 4am by an alarm on the dialysis machine. Put Jasmine on her side so that she would drain some more and stop the machine making a noise. Went back to sleep. Woken up at 5am by Jasmine being sick. Changed the sheets and her nappy and tidied her up, left her off her feed pump for a bit. This kept beeping so eventually put it back on and then was woken up at 7am by the food pump alarm going off. Disconnected the food pump and put some medicines down her tube. Lay there for a bit and then gave Jasmine more medicines at 8am. Went back to sleep and woke up at 9.30am. Gave Jasmine a bottle and some medicines. Had some breakfast and a shower and then Jasmine threw up everywhere so tidied her up.

The community nurse came round at 11.30am to give Jasmine an injection and bring us more syringes and forms and things. She left at 1pm. We had some lunch and fed Jasmine. Then we went to Argos to buy plastic containers to put all of Jasmine’s stuff in. Then we bought Jasmine a sunhat as it was so hot and some cool pink trousers and a lovely summer dress that I couldn’t resist.

It was a lovely day so we went to the Landseer Pub to have a shandy. Neil and I have turned to the drink to get us through as Jasmine’s drugs – magnesium carbonate, folic acid, calcium acetate, etc., don’t really get you high. Jasmine had milk. Then we got the bus home and tidied around the flat – we are gradually getting rid of all the delivery boxes and putting things away. We then changed Jasmine’s PD dressing (sterile handwashing total = 4 minutes), set up her PD machine (sterile handwashing total = 5 minutes), did her observations, fed her and then tidied all around after she vomited again.

We put her on her machine (sterile handwashing total = 5 minutes) and then we had some dinner (because I am a domestic goddess with my home-made bean lasagne) but the alarm went off several times which I went and dealt with as Neil thought it was next door’s microwave. Then we drew up her medicines (she has 20 syringes a day) and made up her feed for the next 24 hours. We did this watching House and Grey’s Anatomy but we didn’t really need to watch them as we are living through our own medical drama. After several cups of tea we were cross-eyed and started getting ready for bed. Jasmine was sound asleep but I thought I would check her nappy, which was just as well as she was lying in urine-drenched sheets. I changed her again and then she filled her nappy so I changed that and got into bed around 2am.

Neil got up around 4am as he heard Jasmine wretching and tried to wind her. He managed to get some wind up after finally deciding to aspirate her tube and get wind out of her tummy that way. Then we put her back down after some nappy changes. At 6am she vomited again so we took her off the feed pump and began the day all over again.

She doesn’t normally vomit this much but her feed mix and her dialysis program changed the day she came home so she might take a couple of days to settle down. Fingers crossed it does, as most pop stars would tell you that the rock and roll lifestyle is not all it is cracked up to be. My top tip to them is: lie on an A4 ring binder so that you are propped up a bit and less prone to vomiting.

Today we finally left Great Ormond Street Hospital. Ruth and I both slept over and were over excited as we got Jasmine ready to leave. We were sad to say goodbye to everyone, as they have been so brilliant thoughout Jasmine’s stay. However, it will be good not to have to go to the hospital, and we will soon be back as outpatients. We promised to pop back up to the ward.

The hospital booked us an ambulance to take us back to our flat. It took us forever to work out how to fold our buggy down and fit it into the boot of the car. We got all Jasmine’s stuff, her medicines, some extra dialysate bags, and a pair of scales into the flat, and spent the rest of the day getting organised.

We got up early this morning and headed down the ward. Jasmine looked quite small this morning as they have been putting her on stronger dialysate in order to get rid of the excess fluid she is retaining. The registrar thinks that she is still retaining some fluid and was squeezing her thighs to test her fluid retention. I disconnected her from her machine, Neil made up her medicines and then we fed her and went out for breakfast.

After breakfast we headed back to the ward so that Neil could set up her machine for this evening.  Then we came home and are lying about here, which is very nice. Jasmine is now getting into the habit of crying really loudly if there is something not exactly to her liking. We find it really funny, but shouldn’t as she is terribly spoilt, but so gorgeous we can’t help ourselves and give in.