Jasmine Stalker-Firth

We had another clinic at Great Ormond Street on Monday. It is hard to believe that it is four weeks since the last one. That means that it is also time to do the stock take for the next delivery of dialysis fluid. Everyone was disappointed that we didn’t bring another baby with us. Ruth is VERY pregnant now!

Jasmine is still growing at 50g a week, slow but steady. Her bloods are generally ok. Her haemoglobin is a bit low so we are going to increase the epo dosage. Epo only comes in certain quantities, and is expensive, so we aren’t going to give 1500 units a week, but 1000 one week followed by 2000 the next week. That will save her from having separate 1000 unit and 500 unit injections. She is still too small to have the semi-automatic pen, and has to have a subcutaneous injection in her leg.

Jasmine’s cholesterol was high on one set of blood results, so next time she has bloods done we have to make sure she has no food for four hours before. We will give her some water though. Otherwise her blood is very thick and it is painful to get a sample.

The consultant said that we can start to think about transplants a bit more definitely and Jasmine should be able to be transplanted before the end of the year, which will be fantastic. There is a long way to go yet though.

We had a trip to the hospital to talk about live kidney donation. The surgeon was still in theatre, so we met with the surgical registrar. We went through all the standard questions again, just to be sure. It is good that I don’t smoke and am not overweight.

Though my Glomerular Filtration Rate (GFR) is below average for my age at around 85, it is not that far below (98 plus or minus 39, from Epstein 1996). Although kidney function generally decreases with age in many cases it may stay constant for many years.

We got to see the results of my CT scan on the computer, so I had a good look at my liver, stomach, kidneys, intestines, etc. They all looked OK to me, and thankfully they all looked OK to the doctors as well. By this time Jasmine had got bored and was singing away loudly to herself, so Ruth took her back to the waiting room.

There was a woman in the waiting room who had donated her kidney three weeks before. She looked pretty well, so that was encouraging. She was showing her scar to the receptionist, so Ruth had a good look. Ruth tried to ask her some questions, but was too upset at the sight of a scar, even though it was nice and neat.

The surgical procedure would be to use key hole surgery to extract the kidney. The plan is to take the left kidney, as the ureter is longer. The artery and vein are sewn shut with titanium. They use multiple stitches instead of a single clip, so it cannot pop off.

The registrar went through the possible complications. Most common is excessive bleeding, at five percent, requiring a blood transfusion. In one case in a hundred the bleeding is so bad that they have to change from key hole surgery to open surgery to stop the bleeding, which would significantly increase the recovery time. One in 3000 cases they miss some bleeding and you have had it….

Then there is intra-abdominal infections. Physical injury to the bowel, spleen, etc. Most of these can be corrected and will be apparent while in hospital. Chest infections and urinary tract infections are also possible. A hernia may develop after leaving the hospital.

The surgeons seem to think it is fairly routine, as they do the surgery all the time. That is reassuring, but at the same time they have to tell you about all the things that could go wrong, which is not reassuring at all! As Jasmine is so young she needs the best chance of a transplant that will last a long time, and a cadaver kidney is unlikely to last as long as a live one. And you can only have a limited number of kidney transplants before you run out of plumbing to attach things to. Jasmine needs the best kidney as soon as possible, as one of our doctors said, “Jasmine needs a transplant as dialysis shortens your life…. Well, transplantation shortens your life too.”

Jasmine came home one year ago today. So, today we give thanks for the wonderful people who look after us so carefully at the hospital, and for all the amazing equipment we have at home which allows us to tuck Jasmine up in the cot next to us every night.

Things may have been a bit tough but I wouldn’t swap a minute of it. Jasmine is smart and beautiful and we love her.

I had several contractions the other day and was convinced I was in labour. It felt very real. So, I ran about the flat saying that I wasn’t ready, and was quite glad when they wore off after an hour. I have a new mobile phone and haven’t quite got the hang of texting on it yet so when I texted my doula to say I was having contractions but wasn’t sure, was it Brackston-Hicks? She got a message from me saying, “I have had some crack”. She was slightly alarmed. I didn’t have any false labour with Jasmine so this is all new to me.

I packed my bag that evening when things calmed down. And now, I am ready to have this baby and am quite excited, albeit a bit sad that Neil and Jasmine won’t be there. I still have a rotten cough, and Jasmine is still full of cold and was snoring so heavily in the cot last night, but in a very cute way. I got my chest checked at my last doctor’s appointment. All clear, thank goodness. Jasmine is looking really well and her vomiting is right down, which is brilliant! But we keep peering at her wondering what is going on. She hasn’t vomited as little as this for a long, long time. Neil is his usual wonderful self – a bit tired with all the extra things he is now picking up, as I find I am needing a bit of a nap in the afternoons, which then makes me a bit restless and chatty at bedtime, which he can well do without when he wants some sleep.

Tomorrow we are off to see the transplant surgeons and talk about Neil’s spare kidney, so that will definitely bring on labour, but luckily we will be in a hospital. I am always impressed with Neil and am thrilled to be his wife, added to that now, I am in awe of him and his desire to do his best for Jasmine.

We have found a new use for all our spare dialysis boxes. Jasmine loved being dragged about in it yesterday and squealed with delight for over an hour. We are wondering if we can fit the new baby in one, as things are pretty snug in our flat.

So much for turning the corner. I was disconnecting Jasmine this morning and the catheter slipped out of my hand and dropped into the cot, leaving me holding the cap which is supposed to cover the dark blue part of the catheter which no one is ever supposed to touch, and it was there open and touching the sheets. I picked the catheter up and for a split second (which felt like forever) I stared at it. I was so stunned at this outcome that I didn’t know what to do. Luckily, Neil was there and said, “Put the cap on.” So I did.

Then we rang the ward and went down there. The lovely nurses took a sample from Jasmine’s peritoneum and sent it off for testing. Luckily, the white cell count came back as seven, which is great and we came home with two nights of bags full of antibiotics.

Actually we pushed the buggy full of dialysis fluid round to PizzaExpress and we had our lunch. And as Jasmine’s temperature had been higher than it should have been on the very hot ward (37.9) during her observations, we took her temperature again and rang the ward to tell them it was all normal again (37.2). After that and a big nice pizza, we got a cab home.

We were so lucky. I am so cross with myself. But as Neil said, if he had done it, I wouldn’t have been angry with him. He certainly wasn’t angry with me. We are so hard on ourselves, and I am trying to forgive myself. Anyway, at least Jasmine is fine. We got her checked out and we have antibiotics so that is good.

These past six weeks have been the toughest since we brought Jasmine home from hospital. She has been ill a lot, which has been scary at times. And we have been ill too, which has been exhausting, as it is difficult to do all the things we need to do on a daily basis. And at times I have wondered how we could possibly continue.

Jasmine is doing a lot better but still has a chesty cough and lots of mucus. We have been putting Vicks on her chest and giving her the odd bit of Calpol. Neil is feeling much better but says that I am a bio-hazard at the moment as I just can’t shake off my cough and I have missed out on lots of cuddles because of what I can transmit. I am so tired of the neti pot and salt gargles. But, I am really good at coughing as I have been up quite a few nights practising.

Today though, I picked her up as I just wanted a cuddle and Jasmine put her hands on my face and kissed me. It was just lovely.

Thrilled as I am to be pregnant, I would not recommend being eight months pregnant and doing dialysis. It is just too much. Neil is a total star all the time, but dialysis is too much for one person, especially when he has been really ill too. We are a team.

I have been quite lucky and managed to avoid the symptoms in the pregnancy book, but the other day I had terrible back pain. It was right under the bone of my right shoulder blade and during a three-minutes handwash would get very, very sore – like a stabbing pain. But, clean hands after three minutes of scrubbing them focus the mind and make it possible to ignore any pains. Anyway, I was sure it was back pain. So, I looked it up on the babycentre website, which made me feel worse: It said that it was stress-related back pain or some horrible liver complaint or I was in early labour, blah, blah, etc. Anyway, after much ado and Neil sensibly getting involved (well apart from when he asked me if I was getting washed enough and was I changing my bra regularly. How rude!), it turns out that I have a spot (a spot! I don’t get spots) and it has been rubbing against my very unsexy maternity bras until the pain gets unbearable. It was not back pain at all. So, now that it has sudocrem on it and is stinging, I am so relieved. I still have a bit more yoga, kegel exercises and positive visualisations I would like to do in preparation for early labour.

So, today I feel like we have turned the corner. Although, to be fair I have said that every couple of days for six weeks through all the long nights, and extra blood tests, astronomical amounts of vomiting, and piles of washing everywhere. I have said it so often, I am sure Neil has wanted to strangle me. I know I would have done if I had been him. But Jasmine’s bloods have started to return to their ‘normal’ levels (of chronically sick child) instead of the frightening levels they were at before. And she has put on a little bit of weight. And today we got the vomiting down to around 1/10 of her daily feed, which was just amazing. This has involved an exhausting feeding schedule of every two hours and a bit of a struggle, but it has worked. We are both a bit fed up but it has been worth it.

Yesterday, we had a delivery and normally I would be moaning about the slot as it was 12.40 – 16.40 but I just didn’t care. I am just so grateful that we get deliveries and that Jasmine’s dialysis hasn’t needed to be changed. We have finally had the time to enjoy the fact that it is down to 12 hours each day. It makes life so much easier.

The lovely Baxter delivery man came early so we got the chance to go for a walk and so we wandered off to the Arsenal stadium and went and sat in the ‘E’ of the Arsenal sign as it provided lots of shade.

Today, as part of getting a bag ready for the hospital, we got out all the old baby clothes which we have washed and put away and I cried a bit as they all brought back so many memories. I kept holding up the tiniest things against her as I can’t believe how she has grown. She tried to chew them all of course and really didn’t care.

Jasmine’s latest thing is to shout ‘Mam’ everytime Neil leaves the room, which is really funny. She also has three molars. One of the top back ones looked all full of tooth decay the other day and I was having a big stress, but after a bit of research I found out that some baby teeth come through in a sack of blood. So, that was a bit of a relief. Today, the ‘tooth decay’ has disappeared – well almost, so that is great! I was having visions of trying to get her on a dentist chair and really I didn’t like them.

We have got Jasmine a toothbrush, but she finds the whole thing a bit confusing, although when we brush our teeth (and when the Tombliboos in The Night Garden do theirs) she thinks it is rather funny.

When you chat to Jasmine she laughs politely when she thinks what you are saying is funny. I don’t know how she knows when to laugh but she does (amazing, some people never learn appropriate reponses – my girl could be a diplomat). And she only does it when it is something funny. And when you feed her on a night and she is half asleep and you put her on your shoulder, she pats your back to get your wind up.

Yesterday was a sad day. My Auntie Yolande died in the early hours of the morning. I have been a bit weepy ever since I found out. Each time someone special dies, it makes me sorry that Jasmine won’t grow up knowing that person.

Jasmine and I both have rotten coughs now as part of the never ending process of clearing out this horrible head cold she got three weeks ago. I feel like I want to throw up everytime I cough and so I quite understand why Jasmine does. However, yesterday we managed to reduce her vomiting back down to its normal 100mls a day and are hoping that we can do the same today. A lot of what she is throwing up today is horrible mucus, so I feel really sorry for her, and am impatient for this cough and cold of hers to completely disappear.

We are determined to get this vomiting sorted though because it will help her sodium bicarbonate levels which are far too high and she is hypokalemic, which means that her potassium levels are too low, which in turn can lead to cardiac arrhythmias, something we don’t want. So, we are going to work hard again today. We have started again with the acupressure and feeding Jasmine smaller amounts more often – two things we let slide a bit when we were all so ill and just standing up was an achievement.

As I write this blog, Jasmine is watching ‘In the Night Garden’ and I gave up trying to get a picture of her looking at me, so I took a picture of how she looks when she watches the TV, which is rather funny. She is unimpressed with her runny nose and me wiping it though.

Everyone keeps telling me that I am a different shape now, and that it looks like the baby has dropped, so I guess it won’t be too long now. I do feel like I have more space to breathe and am going to pack my bag for the hospital today, in between doing everything I can think of to get my Jasmine to vomit less.

Jasmine’s sodium bicarbonate levels have been high for a while. This means that her body pH levels are higher than the normal healthy range of 7.35-7.45 and so her body fluids are too alkali. The doctors think that this could be because Jasmine has been vomiting too much with being ill and so has lost a lot of stomach acid. This leaves the rest of the body out of balance. It is better to be too alkali than too acidic though.

Another issue is that we have swapped to the two chamber dialysis bags. Single chamber bags are glucose based, which is acidic on the peritoneal membrane, and may cause damage over the long term. The two chamber system has a chamber of glucose and a chamber of bicarbonate, and you have to break a seal to mix the bags while setting up the machine. This gives a bio-compatible mixture at the same pH as the body.

However, using the two chamber bags on pediatric patients can lead to alkalosis. The first thing we tried was changing the dialysis program from 11 dwells over 12 and a half hours. Jasmine now has nine dwells of one hour over 12 hours. We have saved another 30 minutes, which is great, but we are a bit worried about the bicarbonate to fully appreciate it at the moment. Jasmine has been for U&Es (blood tests for urea and electrolytes) twice, and though the bicarbonate levels have come down slightly they are still too high.

The next thing to try is to reduce the vomiting. We have been trying to do that since Jasmine was born though. We are going to reduce the amount of fluids we give her and give them more frequently. Otherwise we may have to go back to the naso-gastric (NG) tube again. Jasmine has been feeding without it for 20 weeks now, which is unheard of. She is the only baby on dialysis at Great Ormond Street without an NG tube or gastrostomy. Jasmine vomited all the time with the NG tube though, so I don’t expect it to improve much. We may try feeding her from a bottle, rather than the cup, and see whether that makes it easier to spread the feeds out.

Jasmine is one tough cookie. Neil and I both caught her head cold and my goodness, we were ill. I was in agony as I couldn’t take anything at all and felt very jealous of Neil drinking lemsip. It felt like someone had banged me over the head with a shovel. I was constantly doing neti and drinking hot lemonade and going for lie-downs, at which point Neil would get out of bed do some neti, drink some lemsip and take over looking after Jasmine. Neil has been so ill he has been going to bed in the afternoon – something he never, ever does. It has been a tiring week.

Jasmine who had the head cold first, carried on as usual, singing, laughing, and teething – she has three molars coming through. She kept on drinking her milk and any other fluids we gave her and we gave her a lot, as her blood pressure has been a bit too low to put her comfortably on dialysis, so we have been keeping a close eye on that and letting her drink lots of milk and glucose water.

Yesterday, though she looked really good for the first time in weeks and today, apart from the hacking cough she has, she looks content. At the moment, she sitting watching a bit of Formula 1 with her dad and drinking her milk. Neil is not particularly into Formula 1 but he is obsessed with sunshine and this race is in Shanghai. He likes to watch anywhere hot and sunny. Even his hunt for a ‘manly’ Yoga DVD (he is bored of prenatal yoga) has as its main goal an outdoor sunny backdrop.

Lately, Jasmine has been taking an interest in food. She has been eating Pringles, which she does with gusto and then she crumbles them and throws them on the floor. And she quite likes banana dessert. Neil and I take different approaches to feeding her. I give her whatever I am eating whereas Neil buys baby food that he thinks he might like.

So at the moment, Jasmine likes Pringles, shortbread and chocolate biscuits, Haagan Daas ice-cream and a mouthful of home-made Ayurvedic vegan carrot cake. Neil likes Boots baby banana dessert, Organix baby apple and peach puree, baby oat and berry bars. I think Jasmine likes ice-cream because it soothes her gums. Unfortunately, Neil ate the rest once he got bored of baby food.

The dietician said at our last appointment that because Jasmine eats very little food it really doesn’t matter what we give her. It is just important to encourage her interest in food. And it is much easier to get a few extra calories down her with half of chocolate biscuit or a spoonful of ice-cream than the equivalent in super-rich milk, especially when she is fluid-restricted (and not ill).

It was a shame that we were so ill and in bed as we had no hospital appointments and we couldn’t take advantage of the free time. This week coming up we are back to our usual round of clinics: Jasmine and ante-natal, and bloods and doctors, so we will be roaming between hospitals and sitting in waiting rooms.

We are happy to be at home this Easter.

Last night, Jasmine spiked a fever of 38.8 and after an hour of freezing with the windows open it had still not come down, so we took Jasmine to the hospital to have a sample taken of the fluid in her peritoneum. The white cell count came back at 25, well below the 100 limit for starting treatment with antibiotics.

However, her temperature was still 38.8 and her pulse was 160. The registrar examined her and said that she had a head cold and cough which would make her febrile and that ideally they would keep Jasmine in and treat the fever and observe her until her temperature went and pulse came down to 120 or 130. As it was already 10:30 pm and our dialysis machine was waiting at home ready to go, we thought we would take her home, connect her, and keep an eye on her there. The registrar and nurses, as always, were really lovely and understanding, and after discussing it at length, they let us go home and told us exactly how much Calpol to give her, and how long the fever should last, and to ring them if we were at all worried.

On the ward there were several tiny babies and their parents. Ruth got a bit teary as it reminded us of the tough times we have had and how difficult it must be for these new parents at the moment. Our hearts go out to them.

We got back at 11:00pm and by 1:30am Jasmine’s temperature was normal and her pulse was back down to 130 so we all went to sleep. The lovely nurses on the ward rang us today to see how things were. Jasmine is much better, albeit with a cough, cold and snotty nose.

We were so relieved to be able to go home that we told the black cab driver that we had come from the hospital and why we sometimes have to make midnight dashes. He very kindly refused to take the full fare for bringing us home, even though we insisted.

Yesterday was a day when people were very generous with us. Ruth had a free pedicure from the new beauty salon which is opening up in our complex (Ruth: My toes look great – not that I can see them).

This morning, we had a lazy morning, as Jasmine didn’t finish dialysis until lunchtime, so we had to stay in bed and eat Easter eggs. And then once we disconnected Jasmine, we had an Easter lunch of Greek salad that we had not had the chance to eat yesterday, and then I ate Christmas pudding.

Jasmine’s latest trick is that some mornings when she is bored of waiting to be disconnected, she takes hold of her catheter and passes it to one of us, as if to say: ‘Go on then, disconnect me.’

We have filled Jasmine’s little pink notebook, where we keep her daily fluid intake and vomit record, so yesterday we started a new pink book. This feels like a bit of a milestone. Jasmine has now been drinking without the NG tube for 18 weeks, which is amazing. And over the past few days she has been eating four or five spoonfuls of fruit puree as well.

It has been an exhausting couple of weeks. Grandma left last week and it was sad to see her go. We hoped Jasmine was feeling better with the vomiting and horrible diahorrea, after our hospital visit ruled out any kidney related illness, but it wasn’t to be. Things seemed to get a lot worse, including a great big horrible rash that she got over her legs, arms, and face.

Luckily, as we were wandering around the train station putting Grandma on the train, we bumped into one of our lovely nurses from GOSH, who even though she was on her day-off was fantastic and gave Jasmine a medical exam outside Starbucks and calmed our fears about the rash, which is typically post-viral. So that was good. I was worried that it might be mild measles or something from the MMR, because I had looked up rashes on the NHS direct website which was very vague and didn’t say (as our lovely nurse did) that measles after the MMR jab is quite rare. It just said oh yes your child might get measles 7-10 days after the jab (which fitted Jasmine’s rash) or mumps or german measles.

So throughout the rest of the week, we gave Jasmine loads of fluids as the horrible end of the virus worked its way through her body. She was pooing and puking day and night, but she never stopped drinking her milk and more – glucose water, ordinary water, in fact anything we gave her, which was quite amazing. The poor thing must have been dehydrated some days, even though we were checking her blood pressure more than usual, but it is so variable depending on whether she has had a vomit or a poo, or whatever. We just made sure she had loads of fluids as we didn’t want her to be a crispy baby on a morning after a night on dialysis. And sometimes in the night we would whip out the blood pressure cuff and do a quick check.

Today, Jasmine seems back to herself or thereabouts. Her weight is back up, and her vomiting is back down to its normal (rather large) amount as opposed to the abnormal scary amounts, and the pile of washing going into the washing machine has gone down to its normal once or twice a day as opposed to the three or four when things got really bad. We are relieved. Today she refused some milk for the first time in days, so she can’t be dehydrated anymore. Hallelujah! She also ate a couple of spoonfuls of fruit puree, so that was amazing.

In the middle of this, the hospital where Neil has had a load of tests rang several times over various test results and new tests. And then one of my relatives was rushed into hospital and is poorly. And, then someone suggested some VBAC (vaginal birth after caesarian) websites for me to read, which I would never do normally.

Unfortunately, they weren’t the happy successful stories that the person thought they were. Let’s face it, if you have a happy experience you just live it, you don’t write it down, you only write down the bad stuff (ah yes, I know all about that). So, I read some really frightening scary horrible childbirth stories which made me first hysterical and then really angry, as I have avoided random websites about any medical condition since Jasmine was born, because you can die of fright reading them. Anyway, got over that and my top-tip to anyone is don’t read forums about medical stuff, and try not to be rude to the people who send you the links.

I also keep getting random women coming up to me in the street and then we have this kind of conversation:

Random woman: Oh my God, you are pregnant, when are you due? How old is your baby?
Me: Next month. 13 months.
(Well this bit normally takes much longer and does have a few ‘how cute is your baby’ and ‘you look so well to be that pregnant’ bits, which I quite like as sadly, I am vain)
Random woman: Oh your daughter looks so much smaller.
Me: *Big bad stare*.
(this is not the way I want the conversation to go, where are my compliments?)
Random woman: Did you plan this?
Me: No, it was a pleasant surprise. My husband is disappointed it’s not twins.
Random woman: Blah, blah, blah….
(which extends into big rant about insensitivity of my husband how rude!)
Me: *Polite fake laugh*
(whilst hunting round for an exit)
Random woman: Well you are going to have your hands full. How will you cope? I only have one child, but it was a nightmare, my friend has two and she can’t cope at all, blah, blah, blah, blah…..etc…
Me: Bye then.
Random woman, gabbling on, grabbing my arm as I try to flee: Good luck, you are going to need it, with all those babies, oh my God….

And then I am off – I can run quite fast for an eight-months pregnant lady pushing a buggy full of baby and shopping.

Neil always says that people don’t know the half of it. And it is true. Because the idea of us having a baby that doesn’t vomit everywhere and doesn’t need to be plugged into a machine for 12.5 hours and you don’t have to count (or force down or restrict or pump through her nose) every milligram of specially prepared to a specific recipe milk that passes her lips, to say nothing of the medicines, dressing changes, and injections, seems like such a delightful idea, so much easier to look after, it is hard to get too worried about having your hands full. And I wouldn’t moan about the baby we do have to do things to either. Jasmine is such a delightful girl. She is cute, and smart, and beautiful. And we love her to bits! And I am thrilled to be her mother and to be pregnant.

I do feel we have learnt a lot about ourselves just lately. It is amazing, it doesn’t matter how bone-tired we are, Neil and I always manage to stand up and do whatever needs doing for Jasmine, whether that is dialysis, injections, trips to the chemist/hospital/doctors, nappy-changing, cot-changing, clothes-changing, dialysis orders, deliveries, whether that is at 4am or 4pm. And we do know our Jasmine really well, and understand a lot more about dialysis, blood pressures, weight and why we do what we do everyday, a lot more than we used to.

The new baby is kick, kick, kick now so I am not sleeping that much in the night and wander about quite a lot. Neil suggested that I go back to bed today, so I did and slept until 1pm. So poor Neil didn’t get his Sunday lunch until 3pm as he waited for me.

This week we have another round of blood tests, scans, consultant appointments, counselling and all the rest of it at various hospitals, so we are just making the most of relaxing today, before dialysis and dressing change time kicks off. Oh, Jasmine has just started complaining about lying in her cot – she was supposed to be napping – so I am off to play with her, since she says ‘Mam mam mam mam mam mam,’ all the time and enjoys being kissed (don’t we all?).