Jasmine Stalker-Firth

Today was a very long day. I went down the hospital for a full battery of tests. I had to do three swabs to see whether I have MRSA and another urine test and blood sample. Then I had a GFR test, which involved having a baseline blood test, followed by an injection of some radioactive substance into my left arm, I then had to go back after 2, 3 and 4 hours to give blood through a cannula in my right arm to see how well my kidneys are functioning. I also had a CT scan, chest and abdominal x-rays, and an ECG. I also saw the nephrologist, who was brusque and didn’t mess about.

It is strange going to the hospital when you are healthy. Everyone looked very ill. After six hours of wandering around the hospital and waiting in windowless rooms I was quite fed up. Walking past the palliative care department wasn’t very cheery either. Ruth brought Jasmine down mid-morning to give me some moral support, which was really nice. However, in the afternoon there wasn’t room in the CT scan waiting room for babies, especially when Jasmine started to scream after I put on a blue surgical gown, which stressed me out. So, they went to wait in the main entrance and when I finally came downstairs Ruth was a bit tired as Jasmine had vomited and pooed her way through all the spare clothes – including Ruth’s.

Yesterday Jasmine had her clinic at GOSH. Her dialysis has been reduced by half an hour to 12 and a half hours, so that will be brilliant. Her fill volume and last bag fill were both increased as well. Jasmine had her folic acid dose increased, and swapped her phosphate binder from calcium acetate to calcium carbonate to see whether it helps with her vomiting. The doctors and nurses got a first hand demonstration of Jasmine’s vomiting whilst we were there. We also did a dialysis adequacy test, as Jasmine has been on dialysis for a year. We had to take  in a sample from Jasmine’s drain bag to see how well she is clearing various waste products.  We went to the pharmacy to pick up the prescription and then we got some lunch.

Jasmine hasn’t been sleeping so well on dialysis lately. She has been waking up at 4am or 5am and crying and vomiting for the rest of the night. This has been very tiring for whoever has been on dialysis duty looking after her. Hopefully she will get over it, or the change in dialysis will help.

Jasmine keeps waking up early and wanting extra milk, which is just amazing. She also rolls over and over in the cot and either dangles her legs through the bars, or kicks all her covers off so that she can find the long patient line, wrap it around her legs and bring it to her mouth to chew on it.

We have been looking for sleeping bags which fasten down the middle so we can put the catheter out of the front, as she has outgrown her other ones. She has two which have a zip down the right-hand side which used to be fine before she turned into action baby. She had one which had a zip down the left-hand side but we had to cut it open down the right-hand side and put velcro fasteners on it. And then after all that effort, she has outgrown it. And each time we washed it the fasteners would fall off and the edges would fray and bits of the stuffing would fall out and I would ask out loud why they don’t design baby sleeping bags for babies on dialysis. And Neil would say that there isn’t a market for it.

As she gets bigger, it gets harder to find the right sleeping equipment, as she can’t wear pyjamas, well she could but we would have to cut them off her, if she vomited or pooed on them in the night. I don’t fancy waving a pair of scissors near her or the patient line, especially when tired. And if you don’t have her in a baby-gro she can grasp the patient line in her toes and bring it to her mouth that way and she can also pull her nappy off and tug away at the catheter and dressing. And she can’t wear those all in ones without buttons as they are impossible to get off in the night without waking her up. Mmm, just had a thought, I might just start pinning her in – but then I am worried about safety pins. No, I know, I might sew some press-studs on these sleeping bags. Now there is an idea.

Today, she ate some carrots and potatoes, then later on a chocolate finger and then after that a couple of spoonfuls of ice-cream, which was nice on her teeth, as she is teething again. This is the most she has eaten in months and months, and it was fantastic. She has managed without her NG now for 14 weeks and on some days behaves like she is hungry and cries for milk. At least we think she does. With new behaviour, it takes a while to establish a pattern, and truly believe that is why she is crying.

This afternoon she was full of energy and keeps trying to take her weight on her feet when you hold her, so we put her in the babywalker and she can now push herself backwards across the room. Our carpet hampers her progress, so this is no mean feat. She screws up her face and pushes with all her might and then looks amazed that she has moved herself. We put her on the kitchen tiles and she was spinning herself round and round in the walker quite fast and was so thrilled that she was squealing to herself for at least half an hour and clapping her hands at her progress and admiring her reflection in the glass oven door.

She woke me up at 5.30am this morning and was sick quite a lot as she has had yet another cold. All horrible mucus. So, this afternoon we were both having a nap. She woke up first and as Neil was changing her nappy, I woke up and as I sat up, she waved at me and said something that Neil and I both agreed sounded remarkably like ‘Hi Mama’. Later on she was shouting ‘Baba, baba, baba’ to herself for a long stretch of time and waving to people out of the window.

Yesterday, we took the tube, originally with the plan of going to the end of the line. Jasmine kept sticking her feet out of the buggy and pushing the buggy backwards away from the glass partition between where I was sitting and where the buggy was and away down the tube even with the buggy breaks on. Neil jumped up and grabbed the buggy before she sailed down to the other end of the carriage.

You can tell we don’t go out much. We got out of the tube at Southgate and were amazed. The station is built in the Art Deco style and is funky and the escalators have the original lighting. Neil and I were ‘oohing’ and ‘ahhing’ for ages and wandering about the station. And that was before we went into the big world outside of the tube and out to lunch. Later, we came across a massive Asda which sold everything – my goodness, we were in there for hours, and we only bought a handful of things. It is just that there are no supermarkets near us, so it was a novelty. By the time we get to transplant we are going to be so weird, living in our small world of dialysis as we do.

The other day, Jasmine and I were coming back from the doctors when I spotted a sign saying ‘Women’s Day’. I followed the signs to the local community centre and went in. Inside there were different stalls with information about activities in the local area for women and their babies.

I had a chat with a lady about play centres, as I am still undecided about going or not even if Jasmine can’t join in with sand and paint and water. The lady referred me to the Early Learning Foundation program set up by the Government, which is apparently imperative to growing babies. And it made me ask: Is there nowhere in society where the Labour Party hasn’t felt the need to interfere? And then, against my better judgement, I got really stressed about Jasmine’s development and felt like a bad mother who is not doing enough to ‘hot-house’ her baby. And I resolved there and then to be like Rick Moranis in the film Parenthood who teaches his toddler Nietzsche, advanced mathematics, and kung-fu.

Luckily, after a couple of days common sense prevailed. I am doing exactly what my mum did with me as a child: singing, playing, chatting and reading, as well as going out and about and mixing with others. And I have turned out ok. I have even managed to get a PhD without the Labour Party’s help (which is probably why the cheeky buggars address me incorrectly as ‘Mrs’ in their correspondence).

Anyway, at the centre they had a man singing songs and playing his guitar, so we joined in. Jasmine bounced up and down as she recognised the songs: The wheels on the bus go round and round (her Grandma Stalker sings this to her down the phone), If you are happy and you know it clap your hands (a firm favourite), Row, row, row your boat and some others. And then he sang Heads, shoulder, knees and toes, which I had totally forgotten about – what a great song – and Jasmine loved it. We have been singing it to her ever since. She is great fun and taps her head when we sing. I guess with a bit more practice she will work down to the rest of her body.

The guitar man was thrilled to get some feedback, as the other kids there didn’t recognise any of the songs, but they did enjoy kissing Jasmine, which she objected to, so I had to wrestle them off in between clapping and the like. My goodness, toddlers can move fast. I felt like the West Brom goalie. Later, as we got ready to leave, the guitar man gave her a giraffe balloon as he had really enjoyed having a No. 1 fan and was sorry to see us go.

So, we are going to go to try out a weekly sing-a-long session and investigate what is on offer at all the centres, but I will not worry too much if it doesn’t work out, regardless of Labour’s learning-what-not (Neil: Ruth, please shut up about the Labour Party). Jasmine’s safety is paramount and getting out of the house and somewhere for 10am is fine and necessary for hospital appointments, but it is a massive commitment for a bit of singing.

Yesterday was a bit of a tiring day. Jasmine was so pukey she needed five changes of clothing and I needed three and that was just the afternoon. So, today when we went round a friend’s house and I fed Jasmine and she wasn’t sick at all (well, just a posit), it was very nice. She even gnawed on a shortbread biscuit before rudely hurling it across the room (I was impressed by the distance though). And later she got friendly with my friend’s baby and held her foot, which has to be the start of a beautiful friendship.

Jasmine has started to turn herself on her side on a morning when she wakes up vomiting. She is so clever to have figured that out. It is sad that my poor girl has had to learn how to position herself when vomiting, but I am so impressed by her ability to adapt.

The other morning she woke us up earlier than usual by running her cup up and down the cot bars, like prisoners do in the movies. I picked her out of the cot and gave her some milk, which she guzzled down. She must have been hungry and wanted us to know. This morning she flipped herself over and dangled her feet through the bars, as if she was about to climb down and onto our bed. She is fantastic and I never cease to be amazed by my clever, gorgeous girl.

I am giving up moaning today, as it is not useful. It makes me feel tired and recovering from moaning takes a lot of energy. To say nothing about how poor Neil has to listen to it all. But the plus side about moaning is that if you have time to moan then nothing much is going on. And nothing much going on means that that we are having a good day. Hurrah!

The other day we received through the post some leaflets about our local ‘stay and play’ centre which I got momentarily excited about until I read what was on offer for her age group: sand and water games and painting. Not a great idea for someone who has a catheter sticking out of their abdomen. So, I felt a bit sad, but then reminded myself that we will be able to do all that and more such as giving her a bath and going swimming when Jasmine gets a transplant. And moreover, she will have the energy to run about and enjoy it more. So, we just have to be patient and do all we can to encourage her to grow.

Today the sun is shining again which is lovely so we are going to go out in a bit and look at the bright sky and some of the lovely crocuses which are out in full bloom in the park.

Last week Neil dressed Jasmine in all of the stripey things that she owns altogether. Once he sat her down, he said that she looked a bit mad since the stripes didn’t go together. I said that I thought she looked really cute, and he said that I was as mad (how rude!). I think she looks lovely!

Today we are waiting for our Baxter dialysis delivery. I am a bit worried as our helpful concierge broke our doorbell again (he is still upset about Jasmine – he looks like someone has died everytime we walk through reception, which makes me want to go over, slap him round the chops, and shout: ‘Pull yourself together, man’). We told him to stop trying to fix our doorbell which isn’t broken after we got another concierge to fix it. But hopefully all will go well as it is not snowing today like last month and we have a fixed time and we won’t be on the phone. I know I should stop stressing but sometimes it is hard and it is easier to stress about the minor irritations in life than other things.

Jasmine is absolutely wonderful. This morning whilst Neil was washing her, she was shouting ‘Howzat’, so she is obviously into sport in a big way. Her other words are ‘Abba’ and ‘Ebb’. And once she said ‘Mama’ and I was thrilled. She waves when we take her off to bed and she lies in the cot rubbing her hands together, either rehearsing for Lady MacBeth or she thinks constant hand washing and handcream rubbing is normal.

We have been doing yoga together everyday and Jasmine claps when I put my hands together in Namaste. She also likes to rub my big bump and taps on it when she feels some kicking. The first time she was really alarmed but now thinks it is a good game to play.

Yesterday, I was round a friend’s house and Jasmine insisted on eating a Cadbury’s Chocolate Finger which was brilliant, as she has not wanted to have any food in such a long time. So, I didn’t mind when she rubbed chocolate all over my clean trousers. I am going see if she wants anything more nutritious today.

I tried taking Jasmine out to the corner shop in a sling too, but it wasn’t too successful. I had her on my hip in the sling and she kept leaning sideways to rub my bump and tug my cape and once I had a full shopping bag that didn’t help. Outside the shop luckily, there were a couple of workmen on a fag break who thought I was funny and didn’t mind fastening my cape, picking up all my items, and putting Jasmine’s hat back on. Although the buggy is a nuisance it is easier to go out and about with her in it, especially since I am 29 weeks now and getting quite round, so I think I will stick to that and stop imagining that life is easier without it.

The last week or so, it has been quite tough, thinking about transplant. It is exhausting. Neil was ill the other night – severe headache and feeling sick, and we only had calpol in the house to take away the pain (and that is enough to make anyone feel sick). In the end I had to resort to rubbing lavender on his temples (got that from my herbal remedies book) and spent the whole time thinking ‘Good Lord, I know why they invented neurofen’. Then a couple of nights later I ate something that made me violently sick and poor Neil had to tidy up after me and get me to replace all my fluids. He then phoned the hospital as we had a similar thing when I was pregnant with Jasmine where I was vomiting and felt unable to eat for three days. For a long time afterwards we felt that the illness had caused her kidney failure as it coincided with all the bad news. It wasn’t the case at all – her kidneys never formed properly – but when you are tired and you need some reassurance, it is great to be able to ring the midwife and know exactly what we should be looking for.

It is quite scary when something happens to one of us, as we are totally alone – with no one else to come and help – and that is a frightening thought. On a day when I have lots of energy it makes me really angry – violent, violent rage! People like to talk complete nonsense such as: ‘how sad/angry they feel’, ‘how hard things are for us’, ‘how terribly difficult their lives are but it is nothing compared to our in-their-eyes-really-sad life’. But very few people offer anything sensible that would be of help to us and most don’t even listen when you talk to them, as they are too busy telling you how they think you feel and giving you rubbish advice. But, the one thing that makes me want to strangle someone is their pity. We don’t want anyone’s pity, thank you very much. Having spoken to others in similar situations, this is a common complaint. Talk is cheap and people have difficulty dealing with anything out of the ordinary so instead they like to twitter on, thinking that they are helping. Or, worse still they like to tell you dreadful stories (worse than yours, Ruth) about people they know – ‘top that stories’ – and don’t seem to understand that knowing that someone is worse off than me isn’t going to cheer me up, it makes me cry to know that someone is suffering.

Practical help is thin on the ground. People just don’t want to be a part of anything unpleasant and might offer you two hours of their time on a day that suits them because they imagine it would be cute to look after Jasmine. They have given little thought to the fact that she doesn’t know them as all those visits I was promised, when we first came out of hospital and I was alone all day learning to cope with a baby on dialysis, never happened. Jasmine might not like spending time with strangers. And can these people deal with her constant vomiting or what would they do if her catheter snapped? And then when you say ‘thanks, but no thanks’, people take umbrage. Better still, other ‘helpful’ people tell us that we should think up things for people to do so that they feel better. My Godfathers! I am not running a day-centre here. Jasmine’s care is paramount and I don’t have the energy nor the time for other peoples’ feelings – it is not their life, they are not affected in the way that we are, and why do I have to demonstrate what our daily life is like before they begin to understand anything? Whatever happened to a) taking my word for it, or b) having some imagination. I don’t see why I have to be the one to help them deal with the way they feel about Jasmine. And no, I am not angry about what has happened to Jasmine, as our counsellor keeps asking. No, I am truly angry with, and feel let down by, so-called family and friends.

There have been a couple of people who have understood calmly and without fuss what we go through and have said specifically what they can’t do but have offered to help in other kind, useful ways at great inconvenience to themselves, including taking time off work, and coming to stay with us, which is humbling and brilliant, and moves me to tears. I am very grateful to these people and will be taking them up on their offers when transplant time comes around. And I will remain indebted to these people forever.

Hurrah! The Baxter man has been, like all the Baxter men, he was very nice and jolly, so now I am going to reorganise and count my PD cassettes, a very soothing activity, and then we are all going to go and do something very nice in the sunshine for the afternoon.

Oh yes, we went to GOSH on Monday for bloods and counselling and several people said that Jasmine looked fantastic. I was thrilled, as sometimes when you are tired, you do get a bit paranoid and think: ‘Am I doing everything correctly?’ So to hear our medical team say that Jasmine looks good is the best thing.

I woke today to the dulcet tones of Ruth bawling out the window. She had been keeping up surveillance on the fencing club below us and had caught someone throwing litter in the flower bed (this is being generous to the patch of dirt by the wall outside our window). The guy sheepishly picked up his litter and put it in the bin.

That was just the start of a hectic day. We did the stock take for Baxter ready for our next delivery. There has been a mix-up over the different types of alco-wipes that we get, so Ruth had to explain the problem. The woman on the phone said that there had been a shortage of alco-wipes which is probably explained by the fact they keep delivering them to our house and not giving us any of the other ones which we need.

Jasmine’s catheter dressing needed changing as well. It was a bit crusty today, as she has been pulling on it and it has been weeping. It is difficult to stop her pulling on it, as she is getting very fast.

Jasmine was also due to have her Epo injection. Ruth gave the injection this week, and did a great job, I held Jasmine on my knee while she got stabbed in the leg. She screamed, but soon got over it.

We need more Epo syringes from the chemist, so we tried out the new ordering process. I phoned up the pharmacist and told her what we need. She is going to fill out the prescription, take it to the doctors, get it back from the doctors, order the medicines, and give us a ring when everything is ready. As you can imagine, this should be fantastic, and save us many trips to haggle with the doctors over lost prescriptions.

Our hoover has been on the way out for a while so we went to Argos and got a new Henry Extra. Ruth was so excited we had to unpack it immediately and spend the evening hoovering the flat. Ruth told me, and anyone else who would listen (she kept phoning her parents and giving them updates), all about how she likes hoovering.

Usually we wouldn’t have had time to walk out on such a busy day, but we are managing to do everything a bit faster these days. Though I was worn out just from watching Ruth shampoo the carpet and do her yoga, and had to take to my bed…

We have all been to the hospital to talk about transplants. As we waited in the windowless reception area with all the ill people we soon felt pretty depressed.  We met the living donor transplant co-ordinator and had lots of questions for her.

I had the initial screening tests. You have to have good blood pressure and a body mass index no greater than 30. I was fine on these, and on the urine test.

I can now go on to the transplant assessment day, which does take all day. I will get blood tests for various viruses, creatinine clearance tests, a glomerular filtration rate (GFR) test using a radioactive tracer, an electrocardiogram (ECG), chest X-ray, renal ultrasound and computed tomography (CT) scan. This will ensure that I am healthy enough to donate a kidney, check that I actually have two kidneys, and confirm how many arteries my kidneys have, to decide which kidney would be removed. A significant proportion of potential living kidney donors are rejected after these tests. If you are rejected then whatever health problem you have has to be monitored by your GP.

The good news is that Jasmine is a universal recipient, and so can accept kidneys from any blood group, and would have a reduced waiting time for a cadaver kidney. It also means that Ruth could be a potential donor in the future when Jasmine’s first graft (kidney transplant) fails. All the statistics are at uktransplant.

All kidney harvesting is done with the hand-assisted laparoscopic nephrectomy technique. This gives reduced recovery times and smaller scars, and is supposed to allow the kidney to be harvested just as well as the open technique. I would be in hospital for a week, and have to take it very easy for some time afterwards. I would be on morphine for 24 hours, then the strong paracetamol for a week, and weaker paracetamol after. I will have to keep the wound clean, and go for a check up after four weeks, to keep an eye out for hernias. I would have a check-up every year for the rest of my life.

Potentially, my kidney would then be taken across London to Jasmine in Great Ormond Street Hospital and she would be in hospital for a week or more. We would then have to take her in every day for six weeks for blood tests. We would also have to monitor her fluid balance, replacing any fluids she loses to ensure that the kidney is fully hydrated. We keep being told that this will be very stressful, and I’m sure it will be, but we already do a lot every day, and we wouldn’t have to do any dialysis, and Jasmine’s vomiting should improve straight after the transplant. We want to get Jasmine a kidney as soon as she is big enough to accept one so she can get growing and have more energy.

After many hours in the hospital we were totally stressed out. We went down to a pub on the Thames for some lunch and I had a pint to steady my nerves…

Jasmine likes to share things with us. She will lick whatever she is playing with then give it to you to put in your mouth. Sometimes she pushes it straight into your mouth. And sometimes if you are having a snooze she will bash you with whatever she is playing, so that you can wake up and share it. Ahh!

Her other new skill is that she can clap and she does so all the time and she is brilliant. She started doing it the other day. Her Great Auntie Carol bought her a nursery rhyme book which sings so Jasmine likes to clap along to the singing and then gets very upset if you take the book off her to feed her. So it comes everywhere with us. She likes you to sing along with the book whilst she claps but she turns the pages so quickly that sometimes you are singing Twinkle Twinkle Old Mac-Rockabye Hickory Dickory Dock. Singing all the nursery rhymes together is a talent I didn’t know I had but Jasmine is very impressed.

This week has been quite hectic again. We went to clinics on Monday and Jasmine is growing but slower than before, but apparently that is quite common and nothing to worry about as she is getting all the right levels of protein and the rest of it. She is getting her vitamin D levels monitored too now, which is very good as she is taking part in some new research. They have learnt down at GOSH that vitamin D levels which are too high or too low can affect the artery blood vessels and make them brittle, which can eventually lead to heart problems. Her blood pressure was running a bit higher than is completely comfortable so the consultant reduced her fluids and the dietician gave us a new recipe to make her milk a bit more concentrated.

After GOSH, we went to see an acupressurist to see if she could help us reduce Jasmine’s vomiting. The idea behind the bit of acupressure we are now performing on Jasmine is that we massage her digestive system so that it works quicker and her milk moves quicker through her so she has less time to vomit. This is how the drug domperidone works – it stimulates the digestion to push food through the gut – but unfortunately it had unpleasant side-effects on Jasmine so we had to stop giving her it. So, we are giving acupressure a go. It has been two days so far and there has been a bit less vomiting (saying that though I have just heard Jasmine vomit in the other room where Neil is keeping an eye on her). We have to be patient and try for a good while, as when we began the acupressure on Monday her dialysis program and her diet got changed at the same time, so we need to wait a few days for everything to settle down and then we will see properly what is going on with the acupressure and if any changes need to be made.

Everytime she vomits though I get really disappointed, which is silly, since she can vomit up to 20 times a day and that is not going to disappear overnight. Neil said acupressure is not sorcery and we have to work at it. He is very wise!

The other amazing thing is Jasmine has managed to drink all of her milk for the last 10 weeks without her NG tube. This is just incredible. Although, the other day she did struggle as another tooth was coming through and Neil got a bit down thinking that we might have to put the tube down. But, I was (unusually for me) feeling positive and said that if it did come to that then at least her nose has had a rest for 10 weeks and we would get a bit of a break on an evening – as we always wake her up to give her a nighttime feed, otherwise we struggle to meet her full quota, which she doesn’t like at all and kicks up a big fuss.

Over the weekend Neil and I met some doulas so that if I go into labour during the night when Jasmine is on dialysis, I have someone to take me to hospital and stay with me through the birth, knowing that Neil is with Jasmine and we don’t have to worry about her and our doula is with me so Neil doesn’t have to worry about me. We have found a lovely lady so I am feeling all excited now. It was a bit tough talking to doulas at first as their first question is understandably: “Why do you need a doula?” So that was hard, as it meant talking about Jasmine’s birth and all that we went through.

Feeling settled in my mind has meant that I have finally gotten off the settee and onto the floor to do my yoga. And I am feeling better already. I found that I couldn’t do the pregnancy yoga that I did before as it brought back all of last year, but now I am raring to go and get birth fit. Hurrah! Neil is very encouraging and Jasmine sits on the settee throwing toys off it and sometimes onto me – helping in her own way.

Today we are off to the GP for Jasmine’s latest round of innoculations. She has two today and then she needs two more in the future and then she is ready, vaccination-wise, for transplant. After that she won’t be able to get any more innoculations as she will be immuno-suppressed, so we have to get them all in now.

On Thursday we are off to another hospital with Neil to begin talking about transplants and living donors and to investigate Neil’s potential as Jasmine’s living donor, which is really scary but could be really good as living donor organs have much better results.

I keep hearing lots of people at the moment moaning about their lack of achievements in life (job, career, money, whatever). And I am a bit fed of up to be honest (pregnancy hormones are responsible for a lot). So today, my advice to anyone who feels like they haven’t done much useful with their life is: give a kidney away. One way to do it is called non-directed altruistic donation where you don’t know the person who receives your kidney, but you save a life. What greater achievement is there?

I know a lovely lady who gave her son her spare kidney and this is what she has to say on the subject: http://www.savebabygavin.com/2008/04/23/donate-life-and-save-a-life/. She is an inspiration to us all.

Jasmine is one today. I have cried a lot, tears of joy. Neil has been his usual lovely self, and has rubbed my back a lot. And Jasmine has been non-plussed by the whole event, even though she received loads of lovely cards and presents (thank you, everyone).

We only managed to get her to look at the first card, as shown in the picture here, that played music, and then she was permanently distracted by the envelopes and the lovely shiny wrapping paper. So in a few days time perhaps she will notice that she has lots more interesting things with which to play.

Jasmine loved the candle on her cake and kept trying to touch it, but didn’t want to taste the cake itself, so Neil and I had a little slice each (now there is only a little bit left).

There was a bit of a mix-up with our dialysis delivery on Saturday when it finally arrived, so Neil had to rush off to GOSH this afternoon to pick up more supplies, and when he came home he arrived with a gift from our lovely nurses for Jasmine’s birthday. Here she is modelling one of the hair ribbons, sitting next to her new teddies (she also got a cute hat and mitts but we will save those for another picture).

And finally, we keep this picture in a frame in our living room. It was taken after Jasmine arrived at Great Ormond St, once the team at Homerton had spent several hours making her stable enough to travel. Some lovely person in NICU took two pictures for which I was so grateful. I got to study my daughter whilst I was still at the Homerton and poor Neil was dashing back and forth between hospitals, after having had no sleep the night before.

So today, we remember and thank all the doctors, surgeons and nurses at Homerton on the first day and GOSH ever since, who took such great care (and continue to do so) of Jasmine and I. We remain eternally grateful and give thanks that such wonderful people exist. And we thank everyone who has thought of us, prayed for us, and shared with us over the past year. Thank you for all your love and support.

After all the drama of the week, we have had a lovely Sunday – just lounging about and taking it easy. We are hoping for an early night tonight surrounded by our dialysis boxes and to catch up on our sleep. We will be doing the dressing and the usual dialysis stuff later.

I love Sundays it is the only day of the week when you don’t get post, phone calls, and deliveries. It gives us time to collect our thoughts ready for a new week. Magic!