Jasmine Stalker-Firth

As a parent of a chronically sick child, the message I get everyday is that my time is cheap and I have nothing better to do than either wait around for people who are supposed to make my life easier or I have all day to chase them up when they don’t do their job.

This has happened several times with the community nurses who expected us to sit in ALL DAY and wait for them. It always happens with Fresenius the rubbish food pump people who can’t even deliver giving sets, all the time with our local Primary Care Trust (PCT), and this week it even happened with the Baxter Dialysis people who couldn’t manage in the snow.

Baxter send me a text the day before our delivery is supposed to come to give us a time slot. On Thursday I didn’t get one. I rang them up first thing Friday morning and was told that our delivery would arrive in the afternoon. After much wrangling I managed to get the information that our slot was 11am-2pm, but it would be later especially since we were 6th in the delivery round. Ok fine. We got another phone call at 12noon to say that it wouldn’t be coming, it might come on Saturday if we were lucky – no times at all and that I was unreasonable to expect one, especially as we weren’t an emergency case (I don’t know who is if we aren’t). When I tried to explain that it was very stressful not to know, the woman who was sitting in her call centre told me that she understood EXACTLY how I felt. So, this silly woman with her silly sing song-voice who interrupts you everytime you try to say something knows exactly how I, a pregnant hormonal mother of a chronically sick child, feels. Well she is obviously wasted in the call centre and she should be putting her empathetic talents to better use.

Later we got another phone call to say that the delivery would come on Monday but we would get a phone call from the call centre over the weekend. Ok! So I got out of bed this morning and rang them up to get an ansaphone message telling us that they are closed until Monday so tough luck.

So I was trying not to stress about it, especially as we are due at the hospital 9am Monday morning for a day of hospitals – scans for me and then GOSH – so who knows where this delivery would end up. At noon I was chatting to my mum on the phone (poor woman has to listen to all my woes). When I put the phone down I had a voicemail, and it was the Baxter delivery man, who had been outside 10 minutes earlier (our doorbell intercom is stupidly connected to the phone). When we got downstairs the concierge had already sent him away along with our month’s supply of dialysis bags/dressings/swabs/everything because when the concierge rang our phone/doorbell intercom to ascertain our whereabouts he got an engaged tone, demonstrating that we were in the flat.

After some frantic phoning round (us, not the concierge and not to Baxter who are SHUT even though they know their deliveries are all over the place because of the snow) the Baxter man rang us back and finally came back with the delivery. So, all’s well that end’s well.

Really though, my irritation with how people treat us started at the beginning of the week (if we don’t mention the relatives) when the PCT sent Jasmine a letter to invite her to an open day about food pumps and NG tubes because they don’t know whether to renew Fresenius’s contract with the NHS – even though they sent us a badly designed questionnaire before Christmas on the same subject. Now, I don’t know that many people who wear NG tubes but that is probably because if they need to wear an NG tube then they are too ill to feed themselves and if they are too ill to feed themselves they will be too ill to go out and meet people and go to stupid open days organised by the morons who run the PCT. But then that is just my opinion. And as Jasmine’s carer obviously I have ALL DAY when I am not waiting in for community nurses and deliveries by the concierge’s desk in case he sends everyone away, to go to their stupid open days to tell the PCT how to do their jobs. I would only get to one of their open days however, if I turned private detective and tracked down the incomplete addresses of the random health centres (which seem to be miles from where we live) they included in their inaccurately addressed, grammatically incorrect letter to Jasmine, who can’t, by the way, yet READ.

The next day, Neil went to the GP to pick up our prescription which we had put in 48 hours earlier. They had lost it for the second time this month. (We keep needing to go to the doctors because the dieticians are so hopeless they can’t calculate that a 200gs tub of maxijul only lasts us two days so we need more than four a month – I am beginning to suspect you don’t need much in the way of social skills nor ability to be a dietician. They have software to tell them what to do but unfortunately they won’t give us a copy of it, and it doesn’t include instruction on social pleasantries.) Could we come back the following day? I rang them 9am the following morning to be told that I needed to ring back Friday. I said no and that I was on my way there. When I got there they had created a new prescription which missed off two of things that we absolutely needed and they had already dropped it to the chemist who then needed to order the stuff in. Stuff arriving at the chemist is variable depending on the delivery people. So we plan two weeks in advance and even then sometimes we have to run down to Great Ormond St to get emergency supplies. So when the receptionist at the doctors suggested I should plan in advance, say a week, before I put my perscription in, I again was amazed at how many talented but totally wasted people there are out there who should be running the country instead of squandering their gifts as they do.

Anyway, our lovely chemist got on the case with our GP and the helpful planning lady and they have doubled all our doses and got us some BIG tubs of maxijul (as you can see from the pic) and now we shouldn’t have to go back for a month or so. Hallelujah! So if our lovely chemist could just come and live with us and sort out the rest of the healthcare suppliers and services and the dieticians whom we need to interact with and train our concierge not to send our deliveries away, then we would be off our heads with joy! She is great and we love her, especially next week when she will phone us to tell us that the calcium acetate has arrived (and the rest of the vitapro).

We ventured out this morning to go the chemist to get some more vitapro for Jasmine. It was amazing. The snow has covered everywhere and there were lots of people out building snowmen, having snowball fights and jumping up and down in the snowdrifts.

After the chemist we took Jasmine to the park, although it was a bit tricky pushing the buggy through six inches of snow. Jasmine took the whole thing in her stride, of course, and wasn’t half as excited as us and even fell asleep in the buggy on the way home.

Now we are in the warmth and Jasmine is still asleep. I am not surprised. Yesterday was a long and tiring day as she was teething and unusually irritable and didn’t sleep at all during the day. She vomited a lot and at bedtime we gave her some calpol to give her toothache relief so that she could finally go to sleep.

Since getting back from my parents, we have had a quiet few days. It has been lovely. Neil has started going to the gym again as he was feeling unfit and taking me for walks around the place as he has noticed my distinct lack of exercise and the fact that none of the clothes I wore during the time I was pregnant with Jasmine now fit and I still have 16 weeks to go. Still my mum bought me a lovely red top which I love and wear all the time and Jasmine likes to chew it too.

Today it was freezing but Neil put Jasmine in the sling and made us all walk around the Arsenal stadium. It was pretty good as Jasmine was toasty warm inside his big coat and we all got some exercise and got to listen to the crowds inside cheering on their teams. Then afterwards we went to pick up more milk at our corner shop and they had run out of the nice cake (iced madeira) we keep eating so we have eaten grapes this evening instead.

Not much else going on. I have been feeling quite tired as you can tell by the picture below as we have had a few late nights with Jasmine vomiting and pooing everywhere. Her sixth tooth is finally through today and it looks like her seventh might be on its way. Today, she vomited A LOT even by her standards and so has absorbed most of her last bag fill (the dialysis fluid which stays inside of her peritoneum during the day and carries on dialysing whilst she is off the machine) which made the machine beep like mad tonight when I connected her.

Jasmine is now making a determined effort to tug her catheter out everytime she gets the opportunity i.e., when we change her nappy. So we need our wits about us when nappy changing. This catheter tugging loosens her exit site dressing and causes the tube from her stomach to move about and causes blisters on her stomach. One healed up nicely with a bit of sudocrem and we found another one today under her dressing when we were changing it, so we can’t rub cream on it. I have taped her catheter down so it is harder to tug on and won’t loosen the dressing and her catheter shouldn’t be able to rub on her tummy. Fingers crossed that this this works and that it won’t set the alarms off on the machine, as the slightest change in the way her catheter lies can cause it to kink when she kicks her legs about and set those alarms off on the hour every hour ALL NIGHT. She is really funny in bed and manages to get her feet out of her sleeping bag so that she can wave them about or leave them sticking in the air whilst she sleeps.

The other morning she slept right through until 9am (recovering from yet another bug) and when I woke up I kept staring at the clock as I couldn’t believe we had all had that much sleep. This morning though it was back to 7am projectile vomiting and the rest of it.

Her kidney urine output has gone back up. When she first came out of hospital it was about 200mls per 24 hours and then it went right down to about 40msl/24 hours. Just lately it seems to have increased and Neil and I couldn’t agree by how much so we had a bet on and did a fluid balance (very sexy, you weigh her nappies for 24 hours to see how much urine is generated) and I was right it is now back up to 100mls per 24 hours so Neil owes me a small box of the pink foil-wrapped heart-shaped chocolates from the corner shop.

Jasmine is very clever and generous and when she chews on her toys she puts them in our mouths for us to chew on them too and then takes them back again. She recognises the music to In the Night Garden, as I sang it to her today when I was changing her nappy (catheter distraction technique) and she kept looking at the TV to see if it was on. Her other impressive talent is that she can lift the flaps herself when we read her Dear Zoo and she laughs at the animal noises we make. I guess this is in part because giraffes and camels don’t make much noise and according to Grandad Stalker mine sounded like cows and hyenas. Very cheeky! Jasmine joins in with the chimp noises to show me that they are the funniest ones to make.

We have just come back from visiting the Grandparents Stalker and it was just what we needed. We had a lovely holiday. Everything was perfect, even getting everything in the car and packing seemed quite straightforward this time with our list. And even though we had to do the dialysis and dressing changes and everything whilst there, it was really relaxing. This is most likely because my mum kept doing the washing all the time and cooking us nice dinners, poor thing.

Jasmine had a great time being the centre of attention and all the kisses and cuddles from Grandma and Granddad. Since arriving back here she keeps looking around for all the extra faces coming in and out, as she was waving at my mum and dad everytime they came in the room or when we took her out of a room. I know how she feels as we are sad to be back and enjoyed their company very much. We always forget to take photos so I had to take a couple of quick ones just before leaving and I am sure my mum will tell me off for this one – but I like it, it makes me laugh, as I was sitting on the settee next to everyone when I took this one.

On Saturday, Grandma Stalker took Jasmine out for a walk in the buggy and it was really nice but strange, as it was the first time Jasmine has been anywhere ever without one of us. Neil kept saying things to my mum like: “Now don’t take her trousers off when you get outside.” And my mum looked at him as if he was mad and just nodded, humouring him.

Jasmine’s Uncle Igglepiggle (Iain) came round and Jasmine was captivated by him and enjoyed rubbing his face and sitting on his lap and the white chocolate buttons he brought for her. It was also really nice as I was telling Iain about the latest exchange I have with strangers in the street:

Random weirdo: Oh what a lovely girl. How old is she?
Me: 11 months.
Random weirdo: My God, she is tiny. My baby is 12 months old and can walk and do backflips and is taller than me.

… or some such nonsense. Iain said that he hadn’t noticed if Jasmine was small as she seemed the same size as her cousins which cheered me up no end. And since we are all small (I am five feet tall) that makes sense and what has it got to do with random (tall and not fun-sized) weirdos in the street anyway.

Last week we went to see the transplant surgeons and it was great. I didn’t think talking to them could help, but it really did. The surgeon we spoke to was really, really nice and brilliant. He was very matter of a fact about what they do during surgery and how that would benefit Jasmine, and how Neil would recover if he was a suitable donor. We came away feeling reassured, although when I type that now I get a bit teary, as always. But for the first time since she was born I am beginning to feel in my heart that transplant could be a good thing which is progress. Even though we have been told this many times. We had a funny conversation with our consultant, who is brilliant too, and she said that dialysis shortens your life and then she paused and reflected a little and then said that transplant does too. And when we laughed, she said that transplant was definitely better than dialysis, which it is as it will allow Jasmine to grow and not vomit 20+ times a day.

Last night Jasmine hit the 7kgs mark, which we know was excess fluid so we put on a stronger dialysate bag, but she is not far away and this is progress too, as it feels like she has been 6kgs forever.

Jasmine and I have made friends with another lady and her baby in the building and we go for cups of tea and biscuits, and it is really nice and I enjoy their company. I think Jasmine does too as yesterday we were round their flat and Jasmine was lying on the floor next to the baby (10 weeks old) and leant across to hold her hand and then was burbling at her. We talk about normal baby things like feeding and getting babies to go to sleep and occasionally I might say something that I do with Jasmine but then say that it might be different from normal babyness because she is on dialysis (and is fluid restricted and all the other stuff that goes with it) and everything feels fine. Once over I might have cried. Now I am just thrilled to be sitting about drinking tea and chatting and cuddling Jasmine and enjoying the company of my neighbours, so that is great progress. I lost track of time a bit yesterday afternoon and when we got to the flat Neil was already home feeling weird by himself, as he is never in the flat alone.

Jasmine seems to have extra curly hair today so I couldn’t resist an extra photograph of her here. Her eyes have changed colour too and now seem hazel and not the bright blue they were when she was born. Her teeth at the bottom are a bit crooked and Neil said to Jasmine when they came through, “Oh no Jasmine, you have teeth like your mother.” How rude. My orthodontist and I are very proud of my English teeth.

Jasmine is also very proud of hers and now she has them top and bottom she grinds them together and sounds like a geiger counter.

So we have just got back from the hospital tonight with Jasmine. Today, I was on duty and took Jasmine off dialysis and checked her drain bag as always. All was good and we got on with the day.

Tonight, Neil took the machine down and saw that I hadn’t properly broken the seal on the dialysate bag which we put on the heater. The seal is in the middle of the bag which has two chambers – one contains calcium and the other has sodium bicarbonate and mixing them together allows the dialysate to maintain the correct Ph level for the body. So, last night we were pumping Jasmine full of sodium bicarbonate all because I didn’t fully snap this seal.

We rang the ward and they told us to come in immediately as Jasmine’s electrolytes could be all over the place and Jasmine herself at risk of alkalosis, which left untreated can cause low potassium levels, putting immense strain on the heart and ultimately heart failure.

I am horrified and cannot forgive myself. This happened because, yet again, Neil and I were arguing about the stupid couple who won’t leave us alone. I cannot believe I put Jasmine at risk because I was angry at this selfish couple who won’t take responsibility for their actions and blatantly don’t care who they hurt. And that is the last time I am mentioning it as I sound like a stuck record and might just spontaneously combust if I think about it anymore.

So, we rushed down there and one of our lovely nurses took charge of us and was very comforting and the lovely phlebotomist took Jasmine’s bloods. Jasmine was calm through them and got a squeaky book because she had been so good. All the nurses are just fantastic and look after us so well, but it just so happened tonight that when the night shift turned up, they were some of the ones who looked after Jasmine during our three months stay so we knew them all well, and I was relieved at the thought of leaving my baby with them overnight (even though she would have been perfectly fine with the ones we don’t know so well – but who is rational at a time like this?).

A couple of hours later, the blood results came back ok and we were allowed to go home. The doctor mentioned that Jasmine has chronically high levels of sodium biocarbonate already and they weren’t much higher after my performance last night. Her heart sounded ok and she was in herself fine. In fact, she has had her first fantastic feeding day for months. She only threw up about four times instead of her usual 20+. She has been wimpering today and yesterday as she is cutting two more teeth at the front, bringing the grand total to six.

So, after saying goodbye to all our lovely nurses, tonight we are back at home and I am on my knees giving thanks.

This week is a big week. We are meeting with the transplant surgeons to talk about the future, which is really scary, but ultimately, it is something we should look on positively as it will give us a different sort of life. I am just having trouble adjusting to this thought and that is why we need to spend our time in counselling wisely and not banging on about things/people that I shouldn’t care about.

I am exhausted typing this. Last night I was up half the night with Jasmine vomiting and pooing because of this bug that she has, so Neil has taken over looking after her, and I am off to bed. Our new baby is kicking away as I type this, which is lovely as we try not to worry about her, but it is hard and sadly, we don’t seem to get the time to do the chatting and the massaging to my big bump that we did when I was pregnant with Jasmine. Although Jasmine had a go yesterday at rubbing my tummy and putting her fingers into my navel, which was very nice. And sometimes, in quiet moments I wonder how we are going to cope with a baby on dialysis and a newborn in our tiny, tiny flat, just the two of us. Although, I am thrilled to be having this baby and feel so lucky to be Jasmine’s mother. Especially, as this time three years ago I was recovering from a miscarriage and was told that I was infertile and unlikely to conceive without assistance (and they didn’t mean just Neil’s). Right now we might be having some tricky times but being married to Neil and being Jasmine’s mother and having a new baby are the most enriching experiences and I am so grateful.

Thank you everyone for the lovely supportive messages and emails. And thank you for reading the blog. Knowing you are out there taking an interest and feeling connected lifts us up and helps us immensely, especially on those days when even after chocolate biscuits, yoga and meditation, I have a little bit of trouble and feel a tad sorry for myself (especially yesterday when the Boro lost 3-0 to West Brom [WEST BROM!] and are now in the relegation zone).

Jasmine is totally addicted to In The Night Garden and sits wide-eyed watching it. I don’t see why, there isn’t much of a plot and Igglepiggle is annoying as he loses his blanket all the time (he runs like Jasmine’s Uncle Iain – well just the once when we had both had one shandy too many in Zurich and were trying to catch a cab). Why doesn’t he tie his blanket round his waist? But Jasmine loves it and I love watching her, watching them, and waving bye-bye when they all go to bed.

Jasmine is smart and gorgeous and we love her. We are thrilled that we are all home together tonight. Here is the latest cutest picture of our girl, which was taken especially for her Grandma Stalker’s birthday.

I have been just as upset as Ruth about a certain couple. After asking them not to contact us because of how much they have upset us,  today I received an email asking me whether I could ring them and wondering when we are meeting up next.

The amount of stress and conflict Ruth and I have been through just because they were offended by an email is astounding. I don’t have the time or energy to make allowances for others at the moment. I don’t want to meet up. I want to be left alone.  Please put Jasmine first, by leaving us alone so that we can care for her without any additional stress.

Jasmine has lost weight due to a cold and an upset stomach this week and that is what is foremost in my mind.

Neil and I have had trouble sleeping these past two nights. This is a bad thing, because we need to be refreshed to manage all our dialysis tasks. If we are not fresh to do this, we can make errors, errors which can lead to Jasmine ending up in hospital. We live on a knife edge.

The reason for our unease is that someone close to us who wants to help has always offered unsolicited advice and often sent email. This is because this person cannot help with dialysis which is where we need help, but wants to help in anyway, now that they have finally overcome their distress and fear of Jasmine’s condition. Back in November, this person offered to pay for the storage of the umbilical cord and blood of our new baby (due in May), and asked if we had done that with Jasmine because they had been shocked that I had said on the blog that a kidney transplant only lasts 10 -15 years.

This email although well intended caused me to lose my temper. I replied:

I am astonished and extremely irritated by your email. I can’t believe that you didn’t know about the length of transplants because we have told you many many times over the last nine months. You would have also known had we stored Jasmine’s umbilical cord and blood because we would have told you.

I do wonder why I bother keeping a blog or indeed tell anybody about anything to do with Jasmine because I feel that I am talking to myself and the only person who really really listens and retains the information about our baby and doesn’t think that he is qualified to offer an opinion every two minutes is my Dad.

Our lives are difficult as it is and I really do wish you would bear that in mind before you offer us your constant stream of advice. It is highly offensive when you tell Neil how to give Jasmine her medicines or how he should feed her or when you ask how much money Neil has left in his bank account every single time we see you, as well as taking pictures of Jasmine without including us as if we don’t exist at all, which is a most hurtful thing to do on the regular basis you seem to.

We didn’t store Jasmine’s umbilical cord nor blood since it was an emergency section and we had only found out about this sort of two days prior to her birth and didn’t have time. There are only two places in London that do it and it is science fiction to think that you could grow a kidney from stem cells – the research I have read doesn’t concentrate on this sort of thing at all.

Jasmine is screaming and Neil is trying to calm her down when we are both exhausted so I will finish here and will ask you to please think before you give us anymore advice. We don’t need advice what we need is practical help and a sympathetic ear – both which are in very short supply.

I stand by what I have written. I know that it isn’t particularly warm and fuzzy and reading it now it seems harsh and pompous. I was 12 weeks pregnant at the time and we were thrilled but petrified of having a new baby, after all the heartache we have been through. I like to think that if I had received such an email I would cut me some slack.

This person’s spouse has rung me up twice – both times lasting over an hour and screamed at me down the telephone: I am ridiculous, I am spiteful, mean, and nasty. It is the most devastating thing this person has read and that I would be really embarrassed if this email was shown to anyone. So, today I am showing this email to everyone. The tirade went on until:

Me: It isn’t about you. It is about Jasmine receiving the best care Neil and I can give her.
The person: It is about us.

And shouted at us until we were physically drained and depressed..

The first time this person shouted and screamed, afterwards we had to leave our house at 1am and go down the hospital with Jasmine for an emergency. The next day I rang them up to explain where we had been and to demonstrate no hard feelings etc. A few days later we had a visitor, who trying to help, told me that I had to apologise because this bad feeling caused by the above email wouldn’t go away on its own. I didn’t.

Finally, I got a letter from the screaming person, saying that we were in a ‘muddle’ and they just wanted to help. I appreciated the gesture and wanted to move on but was having a hard time forgetting all the dreadful things this person had said about me, as things said cannot be unsaid and stay with you whether you wish it or not. To help, we had some counselling and learnt that living with a child with a chronic illness means dealing with all sorts of people and their behaviours. People want to help and be good, but stressful times don’t always bring out the best in people.

Our counsellor advised us to get some ‘closure’ on the event so that we could move forward and put our energies into caring for Jasmine. And to use our precious time in counselling discussing how we should deal with Jasmine having a transplant, particularly if Neil is a suitable donor.

So, yesterday we took the opportunity to try and explain how we felt when this person rang us. It did no good. This person shouted again (an improvement on screaming) down the telephone and said that on top of me being all the things I was before (nasty, spiteful, etc), The Family are shocked at my sending this email. When I asked which bits of the email, it soon became clear that this shouting person cannot remember what is in the email and has blocked out all of the horrible things they have said to me. Now I don’t know who The Family are but what I do feel is that I have been misrepresented, which has upset me further. So I am using this opportunity to put forward my side of the story. I also want people to see that having a chronically sick child on dialysis means that you have to deal with lots of things, not just medical problems.

It has also put an immense strain on our marriage – something that having a chronically ill child could never do. We have had blazing rows, tears, lost sleep and lots of sadness over Christmas because of this one person. And we have never ever in our whole relationship of ten years been in a phase like this. We love Jasmine more than words can express and we love and respect each other deeply.

I have not blogged about this before although the situation has upset us for two months, because I thought it would cause more damage. I am blogging about it now because I have found writing about all aspects of Jasmine’s illness here to be cathartic and after yesterday I feel no more damage can be done.

We are not coping well. I am weeping as I type this because of tiredness and because of the emotional stress this person has caused our little family here and the fact that this person has gone about misrepresenting me to others. Neil and I can cope with what we have to do each day for Jasmine. We thank God everyday that she is alive and at home with us. But at the end of each day we are exhausted and don’t have anything left to do deal with other people and their frustrations.

We have taken the step of asking this couple not to contact us again. We must protect ourselves.

Jasmine’s care and the health of our unborn child are the most important things in our lives. If airing our dirty linen in the public domain causes further upset and distress to anyone then I will take down this blog and never write online about Jasmine again.

Today is delivery day. The man has been and we have reorganised the bedroom to put all the dialysis stuff in it and the living room, since the new babywalker and baby highchair are taking up lots of room. I am lounging on the daybed and Jasmine is snoozing next me. We are having a quiet moment and later, I am going to make some cookies – they are from my Sivananda Yoga cookbook and do not contain any animal products so we can stuff our faces with them as they must be good for us.

It has been a busy week. On Wednesday, we went for the 20 weeks scan. We were trying not to get stressed about it, but we were kidding no one least of all ourselves. The lady who led us into the room asked us at what point during my last pregnancy were the problems with Jasmine’s kidneys identified. It had been the 20 weeks scan. Trying to say that made me burst into tears, at which point I gave up trying to behave like I wasn’t besides myself with worry. Everyone was very nice and got the hankies out.

The sonographer began by saying, “Let’s do the important things first.” To us that meant the kidneys, but to her there is more to a baby than a pair of kidneys, so she started with the head and worked her way down to the heart. It seemed like a very long time until we finally got to the kidneys. The sonographer said that there were two. In my pretence of being non-stressed and not worried for the last two weeks (hysterical) the scenario of only one or possibly no kidneys hadn’t even entered my mind. So it just shows you, I don’t have half the imagination I think I have when I give myself over to a good worry. So, really what is the point?

The scan was fine. The picture isn’t great because the baby was moving constantly and giving the sonographer a really hard time in getting all the measurements she needed. However, the baby appears to be healthy. There were no visible boy bits, so it seems that we are having a girl! We are thrilled. We would be thrilled if it was a boy. With Jasmine we didn’t know at all until the minute she was born that she was a girl and had called her Stanley all the way through. It is a bit strange to know already but it is lovely. We are booked in for another scan in four weeks as Jasmine’s kidneys didn’t appear damaged until 35 weeks so they are going to monitor us all the way along.

Jasmine was asleep all through the scan and woke up just in time for the receptionist to tell us that Jasmine and I look very similar – same eyes and eyebrows, apparently. Neil felt quite left out, but Jasmine has his long eyelashes and gentle nature.

Last week my urine looked and smelt a bit strange. I waited a few days as I thought it might be dehydration and then eventually I looked it up in the pregnancy book you get given when you first go to the hospital. The book said that it could be a symptom of many problems: dehydration, kidney infection, liver complaints, and UTIs, which undetected and untreated can damage the kidneys of your unborn child. When your baby has ESRF that is not something you want to read. In fact I am tempted to throw the stupid book in the bin as it tells you not to get stressed as it could stress the baby out – My Godfathers, who writes this stuff?

I got myself into a complete state and almost ran out of the door to the hospital in my pyjamas. Neil said that I couldn’t go anywhere by myself so we all went. I handed in my sample and had a big stress about it for three days. THREE DAYS. Part of me thought that if it takes three days to get the results back then obviously it isn’t urgent but then the other part of me kept imagining all sorts of nonsense.

Everything was fine, probably dehydration, but most likely hormones and the midwife told me to drink 3-4 litres a day. Now, I like to drink water and I drink a lot of it. I rarely drink anything else (well apart from tea and coffee – now limited due to my pregnant status) as most drinks are too sweet. I just like my water : fizzy and still (but none of those horrible fruit flavourings), but I have to say, I am struggling to get four litres down myself. I really am. But I obviously need it because I keep getting blinding headaches and feel parched. So there you have it! I am glad to have got that off my chest (which like the rest of me is getting rather large and I am running out of clothes including maternity ones as I am getting to be a big lass).

Anyway, Jasmine has a cough. Poor thing! I suspect her throat might be a bit sore too. She drank down all of her sytron today which is normally a big struggle and she pulls faces and gags and throws up and screams. Not today, she kept opening her mouth ready for more, probably because sytron is sweet and syrupy it eased her throat. And she is a bit whingey today – very unusual, as she is so normally easygoing. I am going to google about in a minute and see what else I could give her if that is the case. I have a sore throat too and a bit of a cough so sympathise.

Her latest thing is to blow raspberries at people on the tube. I have no idea where she got that from. And, she waves sometimes when you say ‘hi’ and ‘bye-bye’ at her but a lot of the time she waves at inanimate objects. The other day she was waving at my laptop when I was emailing Jen. This morning she was waving at her cup when I was feeding her milk – since the last time her tube went down, she doesn’t feel the need to hold it, unless she wants to push it away. And sometimes she waves at her catheter after you wrestle it out of her hand.

Her other trick is that she is good at undoing her own nappy and pulling really hard on her catheter so that the dressing actually lifts up from her tummy. So now we have to leave her dressed all the time – no more lying on the floor kicking without her nappy, it is just too dangerous. My girl is just so clever – too clever for her own good.

Today, Jasmine’s new highchair arrived, a present from her Grandparents Firth (thank you very much). She sat in it, long enough for a quick photo and then threw up all down it. So, now she is rolling about on the floor, squealing with delight. We have set it up next to our dining table so that Jasmine can see us eating more easily and hopefully, will want to join in.

With our first practice run, she enjoyed putting her feet on the dining table, but that is a start, because although, she is managing her milk quite successfully, Jasmine hasn’t wanted to eat any solids since the last time her tube went down in early November. She will only eat the occasional marmite rice cake – normally when she feels a bit sick (know how that feels) and she will lick the chocolate off a cadbury’s animal biscuit. And sometimes she will eat a spoonful of the creamy cheese sauce off a nice quorn lasagne.

I am hoping that sitting next to us watching us eat will make her want to join in, as she will be the same height and strapped in safely. Balancing her on the table in her bumbo wasn’t really ideal and didn’t make her want to eat carrots and roast potatoes when we were, as she was too busy trying to lean down and touch things on the table.

Our other project – the babywalker – is going really well. She now takes the weight of her body onto her feet and has started to stand in our laps when we hold her up. Previously, Jasmine thought her feet were just for chewing, and is delighted to find out that they are multi-functional. As are we!

We have had a lovely time and can’t believe that tomorrow is 12th Night and all our decorations will come down. In one way it is good as we are running short of dialysis fluid as the Christmas tree is sitting on two boxes of dialysate wrapped in Christmas paper.

Christmas Day was lovely. We had a late start, as Christmas Eve Jasmine had been really vomiting and we had changed the cot twice and our bed once and Jasmine herself so many times and we finally got to bed late and Jasmine was awake in the night and didn’t settle very easily. So on all the photos of us on Christmas Day Jasmine looks all nice and fresh and Neil and I look like we can’t keep our eyes open. Jasmine got lots and lots of clothes and bibs, which was brilliant as she has grown quite a bit without us realising, so we have put a lot of small things away for the new baby and made space for all her new big girl clothes. She also got some great toys too. Thank you, everyone.

On Monday we went to clinic and she has put on a little bit of weight so she is now around 6.4kgs (dry weight). Her head circumference has gone up 0.7cms which was great as it hadn’t been growing and was starting to be a bit of a worry. And she has grown a centimetre in length (now 67cms) which is brilliant too.

On New Year’s Eve we were really exhausted as we had had another bad day and night with Jasmine – with constant vomiting and changing clothes and bedclothes and everything all day and decided that we would just go to bed and not wait up for the New Year. However, being a northern woman I just couldn’t fall asleep. So, at 11.45pm I put the clock on my stomach and kept checking it, then we had this conversation every couple of minutes:

Me:”Are you asleep?”
Neil: “Not with you asking me every two minutes.”
Me:”Do you think we should get up and let the New Year in?”
Neil: “No.”
Me: “Ok.”
Silence, then:
Me:”Are you asleep?”
Neil: “Not with you asking me every two minutes.”
etc…
Neil is a very patient man.

Finally, at 11.57 I got up and said that I was letting the New Year in because traditionally if you don’t let the New Year in then you can’t go out until someone comes round to your house. And I didn’t want to sit in the flat until Easter. So, Neil gave up pretending to be asleep and we got ready.

Traditionally, the person who lets the New Year in is a dark-haired male (we had a small round dark-haired lady in her pyjamas with rather large stomach), he takes with him coal (I had matches), and salt (I never bothered), some people take bread too and an unopened bottle, especially if they are going round someone else’s house to let the New Year in.

So, I stood in the hallway until it was midnight (I had the timer with me as we discovered that none of our clocks tells the same time) and then as soon as my timer went off, I let the New Year in as it was freezing in the hallway and Neil hadn’t yet arrived to open the door. He came running over and said, “Oh let yourself in did you?” (which was a bit rich since he didn’t want to get out of bed and do it. I don’t think you are supposed to, but really it was below zero – even in fluffy bedsocks).

So, we wished each other a Happy New Year and Neil gave me, the person who has let the New Year in as tradition demands, some silver (20p – I asked him if times were hard, he told me not to be cheeky) then I carried on through the flat and let the Old Year out through the balcony door (you can’t sit down until this is done as it is bad luck) and then I cut a fresh cake (a mini-mince pie as we hadn’t got our New Year’s cake organised) and opened a fresh bottle (there was a toss up between some left over cava from the summer and a bottle of beer, the cava won), so that we could toast 2009.

After all that festiveness, we made a nice pot of tea and got back into bed. Jasmine slept through all of this of course! And Neil soon went to sleep, glad that this northern madness which he didn’t sign up for, was over for another year. I sat in the dark drinking my tea and thinking about 2008 and was off my head with joy that Jasmine was asleep next to us – even if that did mean she would wake up, raring to go at 6am!

Today, I have been off my head with joy again as we bought Jasmine a babywalker. I was so excited and couldn’t wait to get home and set it up. Jasmine is doing really well sitting up and can roll a bit and she can wave and stuff, but she has no desire to sit herself up or stand up or anything. So, we are hoping that the babywalker will encourage her to use her legs and stand up. She will remain a few months behind other babies development-wise until she gets a transplant.

So far, so good. She was standing in it and liked the activity music centre on the front and was very happy to be upright and potentially mobile. It was good to feed her milk in as well as it is very tidy because she can vomit all over the table on the front and not over herself. Fantastic!

Now she has flaked out on the floor and we are psyching ourselves up for the usual round of exit site dressing change, setting the machine up, observations, and plugging her in. Things don’t stop even during the holiday season. Neil gave Jasmine her epo injection on New Year’s Day. Poor thing!

So, here’s wishing everyone all the best for 2009. Happy New Year!