Jasmine Stalker-Firth

We have finally got back on schedule and got up this morning at 8am. Neil fed Jasmine at 9am - well plugged her into the food pump - after doing her obs (blood pressure, temperature, weight) and I gave her a wash. This was so much better than feeling tired and getting up at 11am and missing feeds and trying to catch up and having a headache from too much sleep and then not getting to sleep at night.

We didn’t put Jasmine on an overnight feed last night as she wouldn’t go to sleep so I had to feed her to get her to fall asleep by which point she had had all of yesterday’s quota and some of today’s. And today it seems that she has put on a tiny bit of weight which is brilliant!

Neil put Jasmine on her front after this morning’s feed as she looked a bit vomity and she fell asleep and looked like she did in the photo. I used to worry about her sleeping like this but that is how her dad sleeps all night every night so I have calmed down a bit. And two minutes after I took this picture she turned her head to one side and vomited all over the carpet. She is now smiling and looking much happier and rolling about.

Jasmine has refused to eat any solids for about three weeks and I was getting a bit down about it. The only thing she will suck on occasionally is a marmite flavoured rice cake. At the hospital they said not to worry as she knows how to eat and how to drink and she won’t forget these things, even if she doesn’t want to eat or drink at the moment.

On Wednesday whilst waiting for my scan, a family came in with two toddlers who were each given a mini-packet of Cadbury’s animal biscuits and were munching away and staring at Jasmine and saying, “Baby, baby, baby,” as toddlers do. And Jasmine was fixated on their little bags and I felt bad that I didn’t have anything to give her.

So, yesterday we got Jasmine her own little mini-packet and she loved it and waved it about. And then I opened the packet and gave her a little mini-chocolate biscuit and she loved it. She sucked all the chocolate off and gnawed a bit of the biscuit and then threw it on the floor. So I am thrilled that she is starting to show an interest once more in a bit of food. Shame that it wasn’t the veg or bread I offered her at lunchtime but now that I know it isn’t all food all of the time I feel invigorated.

It is interesting as up until a couple of weeks ago she wouldn’t eat sweet things at all and turned her nose up at fruit, but now it seems I can try once more with slices of apples and bananas and satsumas. Fantastic!

It is funny that you can buy so many toys to ’stimulate’ your baby these days as Jasmine spent most of yesterday afternoon playing with Neil’s laptop bag. She zipped and unzipped it and pulled the velcro fastenings backwards and forward. Until she finally settled upon chewing one of the straps.

Yesterday was a funny day. On our return from the hospital we went to sleep around 6am until 8am when Jasmine woke up wanting to be fed. After some usual vomiting and singing and tidying around she went back to sleep around 9.30am and so did I (Neil had made a dash for the camp bed and silence of the other room at 8am). And we all slept until noon.

After that the whole day passed in a blur of tea and toast and pyjamas. Neil connected Jasmine at 5pm and I went to bed as I was still really tired and in my pyjamas and slept until my mum rang around 6pm and we had a big chat. Then I got up and wandered about for more tea and toast as I was too tired and feeling too sick to eat anything else. Jasmine was very good and caught up on her sleep and snoozed from 5pm until we went to bed around 11pm and then she slept all night.

We were all awake at 7am and had lovely breakfast in bed and now I am on my second breakfast of tea and toast (my first was fruit and nuts - aren’t I healthy?). Jasmine is lying next to me intermittently snoozing and singing and coughing up phlegm. My new discovery is that a handful of almonds when I feeling a bit ropey, helps to take away the morning sickness feeling.

Jasmine has a really bad cold again and has been coughing which makes her vomit and has a snotty nose. She gave up feeding on Monday evening which was a bit of a shame, as we had had a lovely day. We went out for lunch and to an afternoon matinee at the cinema to see Ghost Town, which was really funny and made us laugh. Jasmine loved the cinema and kept shouting out to join in with the people on the screen. Everytime we walked her to the doorway she would immediately be quiet as if she didn’t want to miss any of the film.

In the evening, it was a struggle to get her feed down her and then at bedtime she refused her milk altogether. I put the NG tube back down on Tuesday morning. She cried for two hours and pulled it out and then I put it down again and she sicked it up and then I put it down again and she screamed. It was a tiring day. I guess after having drunk all her milk every day for seven weeks, Jasmine had forgotten what the NG felt like and was really upset. Tuesday and Wednesday, every time I went near her to hook her up to the food pump, she would scream when I touched the NG.

Wednesday was a tricky day as I had to go to the hospital to have a glucose test as they suspect that I might have pregnancy diabetes. I didn’t eat anything after 10pm and could only drink water. The test started at 9.15am, they took my blood and gave me two cups of Lucozade to drink. The nurse had difficulty getting my blood out and told me she would do it differently the next time. Unfortunately, she had a worse job that time and was trying to suck it out with a syringe until my arm went numb and the blood trickled down to my hand and I threw up everywhere. I was a bit worried that the test would no longer work since the Lucozade was all over the floor, but she said that it was ok and bravely pressed on using my other arm and got another nurse to mop up the sick. Poor things! And then I waited another hour to have the final blood test with my arms all bandaged up.

Neil came down to drop Jasmine off and then Jasmine and I went to lunch and waited about for my 12-week scan in the fetal renal unit. I had to sit with a rather full bladder and feel extremely uncomfortable for ages as unfortunately everything was running behind by about an hour. Poor Jasmine was throwing up in the waiting room every two minutes much to the horror of the new mothers-to-be and then when I went in for the scan she kept vomiting there and everyone was really brilliant entertaining her and mopping her down. It was the same group of people from my last pregnancy and they work closely with GOSH so they knew all about Jasmine and were just lovely. And the doctor who had sent me out in the night to Homerton when I was in labour was really sorry and kept apologising, which was very sweet as it wasn’t her fault there was no room at the inn.

So, it seems that I am further along than first thought. Today, I am 12 weeks and 5 days. The baby was whizzing about so quickly that it took ages to get all the measurements they needed and they had me jumping up and down on the table to get the baby to move to a better position. But Jasmine was very good and sat patiently for ages. Afterwards, they wanted to do another blood test which took a while as my veins were in ribbons and we had to hunt about for another vein. This test went off better as I was well-hydrated and well-fed.

We finally got home around 6pm after Jasmine and I had put in a full day at the hospital. Jasmine came home in a pair of socks, a baby body, a jumper and a fur coat, as we had run out of all the trousers, tops, tights and dresses I had taken with me. I am glad she had her blanket on in the buggy otherwise people would have been wondering why I dress my baby like a nutter.

I met a retired nurse from GOSH on the tube who was attracted by Jasmine’s NG tube and wanted a full medical history. Ah yes, we are back in the NG world of nosy people and people who want to share with you all their terrible stories and troubles, and want you to tell them yours and don’t seem to care that you might find it painful to talk to them at all and that you are sitting there wishing that they would bugger off and mind their own businesses.

Anyway once home I was looking forward to an early night but what with one thing and another and a midnight trip to GOSH, it was 6am before I got my early night.

Neil keeps thanking me for spotting the split, as we have had to ring the community nurses three times this morning to get some syringes, and each time it reminds him about when they had to come in every two days for a fortnight after Jasmine’s last line break. He is so grateful we have avoided all that - not least of all because antibiotics and nystatin for 14 days don’t help with Jasmine’s weight gain - and I feel very popular today.

My Godfathers, I plugged Jasmine into her foodpump at 9am and at 10.45am I wondered why it hadn’t finished and Neil came in and said that I still was feeding her on the overnight schedule. We put her on an overnight feed last night for the first time in months to catch up and let us all sleep, as she had vomited so much. So poor thing this morning had only had a few mls. I have upped the pace and she has gone off to sleep - finally getting some food in. Seven weeks off the food pump and I have totally forgotten how to use it too.

Right, I think it is time I got out of these pyjamas, as lovely as they are, and got on with the day. I might have to wear a long sleeved top as my arms are covered in bruises and I don’t want to frighten anyone.

Oh no Jasmine has started vomiting. Aaargh!

Evening

I know this is the longest blog in the world already, but when Jasmine and I went to the shops, I met a very nice lady who asked what was wrong with Jasmine so I just said that she needs an NG to feed better. And then she told me a rather sad story.

And it got me thinking. The other night, Neil and I had a discussion about what sort of help we would like to have, and if we feel we need help then what sort of help should we be giving others. And perhaps this is one way I can help others. I may not want to talk about my problems but the people I meet want to talk about theirs, and if they choose to do it with me, then the least I can do is listen to them so that they feel better. It doesn’t matter how sad their stories are, if they need to share them with me, then I must let them.

Right, time to do Jasmine’s dressing.

It is 5am. Jasmine, Neil, and I have just come back from a stroll under the stars on a crisp winter’s night. And it is the first time Jasmine hasn’t been connected to her machine on a night since she was 17 days old.

Neil and I had been up chatting late this evening, even though we knew shouldn’t have as we are always exhausted the next day. After midnight we started getting ready for bed and I changed Jasmine’s dirty nappy. When I looked at her catheter it looked slightly different. Normally there is a thin blue stripe which runs down the whole of Jasmine’s line which comes out of her tummy and is connected to the catheter which we open and close everyday. Tonight, or this morning rather, the thin blue stripe on her line had a white gap in it.

We took a picture of it and blew it up on the computer to see it better and then we shone a torch on the white gap. It was a split! We rang the ward, disconnected Jasmine from her machine, and ordered a taxi.

We got there around 1.30am and the nurses inspected the split and decided that we should wait a while longer to make sure that we got a good sample from Jasmine’s peritoneum.

At 3am they snipped the line where it was split, soaked it in bettadine (antiseptic), attached a brand new catheter and took a sample of her peritoneal fluid and sent it off to the lab. We studied the left over piece of line and the nurses said that it would have definitely split by morning and it was great that we spotted it.

At 4am, the lab results came back - Jasmine’s white cell count was six and we were cleared to go home. Fantastic. Our lovely nurses packed us up with forty-eight hours of dialysis fluid full of antibiotics and heparin and now we are back home drinking tea. Neil is sorting out the washing and I am blogging - the things we do to relax.

We are a bit tired and teary but very proud of my obsessive-compulsive dialysis. Jasmine is snoozing in her cot and we have the rest of the night off dialysis. We are officially on dialysis holiday until 4pm tomorrow and thrilled to be in our own bed tonight.

We made a Christmas cake yesterday, which is something we do every year and is a part of our getting ready for Christmas ritual. Jasmine thought the whole thing was very interesting and kept sticking her hands into things. Neil was worried at one point as he was stirring the cake mix and Jasmine, who was sitting too close for comfort, was wretching a little bit. Luckily, nothing untoward happened and for the whole afternoon our flat smelt delightful as the cake baked in the oven.

This week we will be buying Christmas Cards from Kids Kidney Research who have some lovely cards for sale. Kids Kidney Research raise money to fund kidney research for babies and children in the UK.

Most people don’t realise that a good working kidney transplant will only work, if you are lucky, for 10-15 years, after which time it slowly starts to fail. If you are fortunate, you go are back on dialysis and the transplant waiting list. Research which explores new therapies to heal damaged kidneys or correct the faulty genes that cause kidney disease gives us all hope for a better future. So buy some cards or better still become a kidney donor!

This morning Jasmine and I watched the National Service of Rememberance at the Cenotaph in Whitehall on the Beeb. I was a bit weepy thinking of all the young people who have lost their lives over the past 80 years and gave thanks that the people I know who went off to war, came back.

We bought Jasmine a lovely fur coat, fake of course as she is one ethically-minded baby, to keep her warm in winter. She looks very fetching and so I couldn’t resist putting a picture up her.

We’ve been out to the shops this morning so that she could model her new coat and now she is flaked out having her afternoon nap.

Once it gets dark this evening we are going to take Jasmine to the top of our building to show her some fireworks and have fun on her first bonfire night.

We went to clinic yesterday morning and they seemed pleased with Jasmine’s progress, which was great as I had been stressing about the fact that Jasmine has lost weight this week. However, she has grown about two centimetres in a month, so that is a good amount. She is back on the 2nd centile, as she was slipping off the chart and it was a bit of a worry. There was another baby getting his bloods done just before Jasmine and he was huge in comparison to my little baby girl! Still, she is growing which is the main thing.

They increased Jasmine’s feed in a big way which is great and we have swapped from SMA to Cow & Gate, because SMA in the concentrated doses we now need provides too much Vitamin A. So, with this new formula hopefully Jasmine can start ‘putting the beef on’ as my mother would say.

We got home late afternoon and then got a phone call from GOSH, Jasmine’s potassium levels were way too high and it was a bit of a worry. So, they invited to us to go to GOSH on Wednesday morning to repeat the blood test because it seemed so strange that her potassium was so high and her calcium low and generally, the results didn’t tally.

We then had a bit of a bad night as Jasmine’s alarms went off hourly through the night until 4am and then we had a break until 6am when it went off again and then at 7am someone rang us up - wrong number. This morning Jasmine and I were taking turns to vomit, until I felt loads better and used the brief window of opportunity to rush about and get the machine ready for tonight and do all the other things around the house until the sickness set back in.

GOSH rang this afternoon as they had managed to use the extra blood they had taken from Jasmine, as her blood was coming out really well yesterday - as sometimes it is a bit of struggle to get everything they need from her tiny veins - to repeat some of the tests and her potassium came back fine and her calcium was just a tad on the low side which means she is putting it in her bones. I was so relieved. So, we don’t have to go back to GOSH tomorrow. Her other blood results - urea, creatinine, iron, etc., - are looking ok. And with her extra dose of epotein she is quite energetic, which is lovely to watch everyday.

Today she was on her new super high powered Cow & Gate with loads of maxijul and vitapro and she managed beautifully. She is still on the doidy cup as she hasn’t needed the NG tube yet and she managed all of her extra feeds and more - since she was doing a bit of vomiting - and I must replace what she loses. Hopefully, she will get used to the new super feed and her vomiting will calm down as she did about a third more vomiting today than she usually does.

Jasmine spent some of the morning lying on the floor arching her back and some of it trashing her baby gym and then the rest of it sitting next to me on the settee whilst we watched the American Elections getting underway. It was difficult to completely hear as Jasmine was singing very loudly for at least an hour and staring at me whilst she was singing, which was very funny. Later on we went for a walk and Jasmine was singing in her buggy and waved back at one of the guys who works in our building. She is just fabulous and her little gummy smile makes me cry with joy.

Jasmine has been making loads of noise over the past 24 hours. We think it is because she is teething. Her weight, temperature, blood pressure and peritoneal fluid are fine (I know I have checked them twice in the last 24 hours, as usual). So, in between giving her things to chew and rubbing her gums with bonjela there isn’t a lot else we can do. Everytime she puts something in her mouth she pushes it up into her top gum so we are waiting to see if a tooth will appear.

Jasmine started wailing about 6am this morning, so once I disconnected her, Neil got his Tuareg sling out and has been carrying Jasmine about in it. This is very nice as we can see how much she has grown since the last time he used it.

So, I am 10 weeks pregnant. This is a lovely surprise, totally unexpected and now we are over the shock, we are really excited and pleased. Our nurse clinician said that we had done really well to fit that in on top of dialysis, which made us laugh for ages.

Last Friday, I went to the antenatal clinic for a scan to see what was happening. It was a bit of strain as all the memories of Jasmine’s scans and birth came flooding back. I gave up trying to put on a brave face and was a bit weepy through the scan and the bloods and talking about my previous pregnancies to the midwife.

I have morning sickness (or should that be all day sickness) which doesn’t sit well with dialysis. I have to breathe long and hard when I have clean hands ‘cos I really don’t want to wash them again. And when I don’t have things to do, Jasmine and I are spending a lot of time lying on the settee eating marmite rice cakes. Jasmine likes them and they stop me feeling sick.

Jasmine was really funny earlier as she was sitting on top of me and I was a bit tired and was sighing and yawning. She would stare at me for a bit and then yawn and sigh right back at me. Now, she is lying on the floor chewing her sock. I have lost count of the times I have put it back on her foot.

Today is the first time for over a month that Jasmine is struggling with her milk. She keeps refusing it and screaming if I try to press it on her. I think she is teething again and even let me put some bonjela on her gums, so she must be in pain. I guess we are going to have to put the NG down this evening. I am a bit sad, but she has done so well to drink all of her milk everyday for 30 days and eat food on top of that. And as long as she gets what she needs to grow, that is the main thing. She has been sitting round 6kgs (13lbs) for a while now, but I guess that is in part because she had to go on antibiotics again. We have clinic on Monday, so hopefully they will push her food quota right up.

Here is, probably, the last picture of Jasmine without her NG for a while in her winter woolly hat:

A couple of weeks ago we noticed that the sealed wrapping which the dialysate bags come in had changed. Previously, they had been very clear so you could see what the colour of the dialysate bags were like. Suddenly, they had a marbled opaque look to them. We threw a couple of bags away, as we thought that there was something wrong with them. All bags are normally clear and easy to see. We hadn’t been warned that the wrapping was changing so we just assumed that there was something wrong. It looked like there was definitely something wrong with these bags. Finally, when it seemed like the whole batch looked like that, we rang up our unit, then we rang up Baxter who makes the bags, and then the ward, and no one really had an answer. This was a shame as normally Baxter are quite good at informing our nurse clinician if there are any changes at all.

So we got used to the idea of ripping open the wrappings and then inspecting the dialysate bags to check that they were ok. Then, we got another batch of dialysate and the bags seem back to the way they were. So who knows? Baxter certainly, didn’t but then when we ring them, we ring a call centre and the people in there have nothing to do with bagging or anything so of course wouldn’t know.

Anyway, the whole thing got me thinking about how my attention to detail, which was always pretty good thanks to doing a PhD, is now getting out of hand. Because hygiene is paramount when doing dialysis, I am now obsessed with clean hands. When the community nurse came round to add antibiotics to our bags, she brought a student nurse, whom she asked to hold something. He hadn’t washed his hands on arrival, so of course I wouldn’t let him touch anything. I didn’t know where he had been. And now I notice what other people do with their hands all the time. I see people in the street touching their noses and then shaking hands with other people.

And on an evening when I am setting up the machine, I notice exactly what my hands touch, if I have an itchy nose or hair in the way or glasses slipping down my nose, it just all has to wait, until these bags are connected. I notice the exact colour of each bag, the condensation on the wrapping and the blue connectors, how sometimes the drain line steams up a little bit when I connect it to the drain bag, where the lines from the machine touch the cot, and the cabinet we have the machine on. It is neverending. But is it healthy?

I guess it is a good thing because this attention to detail is the thing that prevented Jasmine getting an infection two weeks ago when she kicked Neil’s hand so that he touched the catheter, but I do wonder when Jasmine gets a kidney, will we recover from our OCD?