Jasmine Stalker-Firth

Jasmine has been getting much faster at shuffling across the floor. She sits upright and wiggles her way around the living room. We have to keep a much closer eye on her now.

Calista had to go for her second round of immunisations. She is now 6.14 kg (13 lbs 8 oz) and tracking the 75th centile. She is doing really well and starting to look around and smile. We think she is teething already, as her front teeth are visible through her gums and she is drooling. Ruth has been carrying Calista in the sling, which she likes, as she always goes to sleep.

The other day I was sitting on the floor feeding Jasmine and managed to bend my big-toe nail back, causing it to bleed. Ruth got out some sterile water and dressings and dressed the wound, which was great. I went back to feeding Jasmine, and Ruth promptly stood on my remaining toes!

We got Jasmine a mini buggy that she can put her dolls in. Now she shuffles over, puts piglet in the buggy and shouts what sounds like “I did it”. Then she pushes him over to the scales that we weigh Jasmine on every morning and evening (Jasmine is now 10.3 kg or 22 lbs 11 oz). She takes piglet out of the buggy and puts him on the scales (piglet weighs 0.1 kg). We thought that she was going to do his blood pressure and temperature next. It was only then that we noticed that piglet actually had a plaster on his foot. Jasmine had stuck one on to copy her dad.

Last year we had a line break in Jasmine’s catheter and ended up doing two weeks of antibiotics over our wedding anniversary, so this year we were prepared, and began celebrating a week in advance. In the end nothing bad happened, and by the time our anniversary arrived we were worn out celebrating!

On Thursday we met Great Grandma Billie again, before she headed back to the USA, and all the Firths. We had lots of tea and cakes at the Wellcome Collection by Euston station.

Everyone took lots of photos and much time was spent trying to get Jasmine to look in the right direction – she was much more interested in looking at strangers and trying to pick chocolate cake off the sofa.

Yesterday, we got our dialysis delivery, all 22 boxes of dialysis fluid and lots of other stuff that we need everyday. We also got our shopping delivered as we go through 10 million nappies and babywipes nowadays and it is so nice to get them brought to our door. Once the girls are old enough, we are going to go out and plant a whole forest to make up for the massive landfill of rubbish we are currently generating.

Today, we are feeling all organised and are having a calm day. This is mainly because Jasmine slept through the whole night and woke up at 7.30am for the first time in about a year. It was fantastic. I put Calista down at midnight and got unbroken sleep until Jasmine woke. Neil made us a lovely breakfast (pain au chocolat and latte) and then we disconnected Jasmine and I fed Calista whilst Neil did Jasmine’s obs and washed and dressed her. And because we felt so rested we pressed on and I did Jasmine’s exit site and the machine and were all done by 10.30am. Amazing!

This week Neil went to see an podiatrist to get his feet fixed – poor man is dropping to bits – and I went to the chiropractor who has said that she doesn’t need to see me for three weeks as my pelvis has stayed correctly aligned, which is very good. As we didn’t have much in the way of appointments, we had time to catch up on all the exciting stuff like cleaning the windows, dusting, and hoovering round, and tidying up as our new bed no longer has room under it to store things. But because as we have traded in our king size bed for a double one we have room to wander about now – well not walk sideways all the time – so that is good.

We have had a big debate about Jasmine’s hair. Neil wanted to cut it so that it is easier to keep clean and tidy when she vomits (all the time) but I have resisted as she looks so cute with her lovely curls. So yesterday, I put her hair into pigtails which she wasn’t too keen on and kept pulling them out.

We often see other girls Jasmine’s age with hats, sunglasses, socks, shoes and hair accessories in, sitting happily in their buggies, and wonder how their parents manage it as Jasmine thinks everything needs pulling off and throwing on the floor. So we have given up putting anything on her so she will just have to look like a mad hippy (er like me then).

Jasmine has started to talk and is really funny. She babbles on in a way that sounds like conversation with the odd recognisable word. The other day, Neil took her blood pressure and said, ’90’. And then Jasmine said what sounded like, ’88’. We laughed for ages. She also likes the telephone and gets hold of it, presses a few buttons and then holds it to her ear. She can shuffle very fast now. She shuffles on her bum right across the room taking her opportunities where she can to grab things off tables or open cupboard doors before we catch her. She is great fun.

I am a bit sad today as we have decided to sell our chaise longue. We just don’t have the space for it anymore and it is much easier to sell this beautiful peace of furniture than to move house. It has been lovely to sit on and imagine all the people who must have sat on it over the years (it is supposed to be Victorian) and I am sorry to see it go. So, if you know anyone who wants to own a beautiful antique chaise longue then let us know.

We went out for lunch yesterday with Jasmine and Calista’s Great-Grandma Billie and Great-Uncle Johnny who are over visiting from the States. We had a lovely time and were sorry to say goodbye at the train station.

Today we are waiting in for the delivery of our new bed as our current one’s springs are broken because we sit on the end of it to feed Jasmine and we stand and scramble on it to get things out of the cupboards overhead and to get us in and out of it. There isn’t much standing room on our bedroom floor.

It is nice to be sitting down and not doing anything today as we have had a busy week. It started on Sunday night. Jasmine was up most of the night screaming, either because she was ill – she had an upset tummy, or because she didn’t want to be in the cot, or because the dialysis was tugging on her insides as it does when she is dry. It is hard to tell what was causing her discomfort, but she did quite a bit of vomiting. Normally, I would get her out of the cot to lie with me on the bed. But I was too tired to have her next to me as you have to be really careful not to lie on the patient line. And just lately I have had several dreams about line breaks, which was either my subconscious telling me that something wasn’t right or I can predict the future.

The following morning we were exhausted when we went to clinics (we walked down as I am feeling so much better hip-wise to avoid squeezing on the tube in rush hour). Clinics went well and Jasmine had an abdominal ultrasound. It took quite a while as she was wriggling a bit. But the technician said that her vessels look ok.

We came straight home and got Jasmine on early (5.30pm) as she was due back into hospital the next morning at 7am for her MRV. I was lying down on the bed and Neil sat entertaining Jasmine in her cot as she was outraged to be back in it and attached so soon. Then she went on her first drain and Neil kept staring at the patient line saying, “There is something not right here. There are lots of bubbles in this line. Why are there bubbles?” When she came to the end of the drain Neil picked her up to shake out the last few mls to avoid any alarms and then as he put her down he noticed that her leg was wet. It is amazing how you forget how tired you are when you notice that something isn’t right. I leapt out of bed and got a clamp out of the drawer as we stared down at the patient line and saw that there were bubbles BUBBLES coming out of the line. In my panic I forgot all protocol and clamped the line (without an alco-wipe) using the wrong end of the clamp. My main priority was to get the line shut. Neil got me to hold Jasmine as he got another clamp and an alco-wipe and clamped it further up and then wrapped the hole with an alco-wipe, then we phoned GOSH. During all of this Jasmine and Calista were both screaming their heads off.

After that Neil did a minute handwash, wrapped the catheter in an alco-wipe, opened a mini-cap and then did a three-minute handwash and disconnected her. He is very calm in a crisis. I was holding both screaming children.

Then Neil got Jasmine ready, called a cab and took her to the hospital. Jasmine was thrilled to be out of the cot and waved bye-bye. Calista and I stayed behind and collected together a bag full of clothes and toiletries for Neil and Jasmine. And organised some simple dinner we could eat on the ward.

By the time Calista and I arrived at the hospital Jasmine had a new connector-catheter on and had had a sample taken. The catheter had split just above the titanium connector so she has a rather short catheter now as the lovely nurse had to snip quite a bit off. On the whole, the catheter is great, as it is soft which is perfect for her exit site and her skin but not so good where the connector sits. We think that the weight of the titanium connector has strained the plastic so that it has split, which was where the bubbles came out. But it did well and lasted seven months. It was also better than the other connectors which seemed to split the plastic and caused us problems in the past.

Anyway! We were very lucky as Jasmine’s white cell count was 26 so she didn’t need to go on continuous cycling for 48 hours. She just had antibiotics in her dialysate bags for two days. Neil and Jasmine stayed on the ward so she could go straight back on dialysis and be taken off a bit later the following morning. Calista and I stayed until midnight and then got a cab back. And then we came back the next morning with milk for Jasmine and breakfast for Neil.

We had a nice day on the ward. It was wonderful to hand the care over to our lovely nurses, and to see everyone and to talk to other parents in similar situations. Neil took Jasmine down for her MRV, he said that she didn’t struggle this time as they put the mask on her. And when Neil went down for her after she had had time to recover from the general anaesthetic, she looked fine, as if she had just been for a nap.

Neil said that my bag-packing in an emergency is rubbish – he had two pyjama tops and no bottoms, he had footspray (I always think my feet get hot on the ward) but no nappies or dresses for Jasmine but it was full of various mad things. So we think that I should have an emergency packing list rather like my going away list which works so well.

Looking after Calista has shown us how ill Jasmine is and how time-consuming it is to look after her, especially with all the dialysis procedures we need to do each day, to say nothing of the vomiting that poor Jasmine has to go through before and after feeds and medicines. In contrast, having a new born baby is no work at all. It is the easiest thing in the world and lovely but makes me feel sad that Jasmine goes through so much each day just to stay stable. So, with this new knowledge, I am finally facing the prospect of transplant as a positive thing for Jasmine. I said as much to the nurse specialist down the hospital and she said that we must be, at this point, chronically tired with the daily grind of dialysis. I think she is right. Neil found himself in A&E at Moorfields Eye Hospital the other day and had to sit and wait for three hours. He said that it was bliss just to sit and wait and have nothing to do. It is funny that our idea of a good day out is to sit in A&E or on a hospital ward with someone looking after us.

That said, I am so grateful that we can do PD at home and that Jasmine is with us every night, so I don’t care how tired we get. It is magic. Words cannot express our gratitude for the wonderful team in the dialysis unit and on the ward at GOSH who support us so brilliantly and work so hard to keep Jasmine stable.

We went up to visit my in-laws for the week, so that they could meet Calista. We also needed a break, as we had not been able to get out of London for months. While we were visiting, a family friend came round and said, “A change is as good as a break”, but we weren’t so sure, as we had worn ourselves out getting there and were too exhausted to enjoy ourselves.  However, once we got home, after recovering from the 500 miles round trip, we did really appreciate seeing the Grandparents and the break from our routine.

The day we travelled we all got up at 6am to disconnect Jasmine. I then went to pick up the largest hire car we could find, a Volvo V70 estate this time. Ruth had been packing for 48 hours and going through her checklists. She got the girls ready while I loaded the car. We left at 11:00am and arrived at 6:30pm after many feeding and vomit stops. We then had to unload everything, set up the machine, make the milk, and get everyone to bed. We flopped into bed ourselves about 1am.

Overnight we had more alarms than usual. Jasmine wasn’t at the correct height relative to the dialysis machine, so didn’t fill up properly. The machine kept alarming until it finally stopped working altogether, so we phoned the renal ward at GOSH. We tried a few things, then they suggested turning the machine off at the mains, and back on again. We thought we were talking to IT support by mistake That worked and Jasmine got through the rest of the night okay.

The next day an administrator from GOSH phoned up to schedule an MRI for Jasmine. We weren’t expecting the call and she was going on about MRIs, GAs, AM surgery lists and booking a bed on the ward for the overnight stay. As she wasn’t medically trained she couldn’t explain what she was talking about and freaked us out. A medical registrar phoned us back and explained that Jasmine has to be prepped on the ward as she needs a general anaesthetic for the MRI scan, so she stays still. We have the option to stay overnight, but we will get up early and go in for 7 am.

The day before we were due to come home we had recovered enough to try to enjoy ourselves, but then we had start packing all over again to get ready to leave.

It was our dialysis delivery day today and normally I moan my head off about having to stay in but today, I was so glad just to be able to sit down at home and not be waiting in a hospital, doctor’s surgery, chiropodists, or chiropractors. Huzzah! I am glad all these places exist and look after us so well, but it is nice when you don’t have to go to them. I didn’t have much of a sit down as Jasmine kept throwing up everywhere and Calista was a bit grizzly too and vomited a whole feed back up. Neil has had an upset stomach which started the other night and has left him feeling ill and weak so, I think they have all had a bug, as there was a lot more vomit than usual all round. Fingers crossed I don’t catch it as I was in charge of dialysis and giving Jasmine her epo injection (boo hiss) this evening.

As Jasmine’s dialysis regime has changed, the Baxter man arrived with 21 boxes of dialysis fluid. Our living room is now one big dialysis store room and we are out of ideas about what to do with them. So, they are just piled up against one wall. After the lovely Baxter man left, all four of us went for a lie-down. Unfortunately, I was near the phone which kept bloody ringing with annoying people offering me debt collection schemes and wanting to do surveys on me.

This week has been the busiest, but all the appointments went quite smoothly and we were really lucky that we didn’t have to wait too long for any of them. On Tuesday my six-week check-up went well and afterwards I came straight home to pick up my girl Jasmine and give her a big cuddle. I have really missed picking her up whenever we need a cuddle and having to ask Neil to put her on my knee and take her off again has been a bit of a drag all round. She has gotten so big and is quite heavy, but it is lovely to pick her up whenever. I know that I am getting stronger as I can almost do all the exercises the chiropractor has set me. This evening I got my little carpet cleaner out to wash the carpet, although it is a bit of a lost cause now with all the vomit stains everywhere, but since Jasmine rolls about a lot on the carpet, it is nice to know that it is clean for her even if it looks a state. I must be recovering if I have the energy to scrub the carpet.

On Wednesday, Jasmine’s parathyroid scan seemed to be ok. We won’t find out the results until the next clinic but the sonographer said that if you can’t see the parathyroid on the scan, which she couldn’t, then all is well. We walked down to GOSH as we had to travel in rush hour and two buggies on the tube can be a bit of a challenge. After lunch, Calista got a clean bill of health at her six week check-up. And late afternoon we even managed to fit in some Abbot food pump training. The lady came to our house which was nice. After she went Neil and I lay on the sofa stuffing our faces with chocolate biscuits to build up the strength to do the machine and the dressing and all the evening chores, as we were really tired by then.

On Thursday morning, Neil went round to the doctors to get various ailments treated. I think he is run down after his heroic non-stop dialysis duty and generally looking after everyone. The poor man needs a Bob Martins, as my mother would say. After the doctors he went to the chemist to pick up all of our supplies and struggled home under the weight of the massive maxijul tubs that Jasmine uses. And then he went down to the concierge to drag back our new food pump and all of its accessories. The concierge came with him as there were a lot of boxes.

We also have some new style reusable medicina syringes for Jasmine’s medicines. You can use them seven times – it says seven days on the box, but we are interpreting this as seven times, as I am sure they won’t spontaneously combust at the end of the week. You have to wash them before you can use them even though they arrive in a sealed packet. How to do this and whether you should sterilise them before use is just not clear, but they do have jolly pictures on the side of the box. So, if you draw up your medicines one at a time just before you give them, then life is going to be one big cycle of washing your syringes and sterilising them before use, or worrying about whether you should have sterilised them if you are just washing them. Mmm! Not great when you have a load of other stuff to do. After a bit of a dither this morning, I washed a big handful, sterilised them and then drew up some Ranitidine. My top tip is to separate them out, and put them in a colander and fill the sink up with Fairy Liquid and let them soak for a while and then rinse them out – no hassle since they are in the colander – and then put them in the steriliser. Ours is one of those microwave steam ones which are really good.

This morning, Jasmine put her arms out for Calista. I put Calista into Jasmine’s arms and Jasmine hugged and kissed her, and then job done, Jasmine got a bit distracted and poked Calista in the eye.
Jasmine is also totally distracted by Calista’s new fabulous booties (thanks Nicola) and funky feetfinders (thank you Barbara) and pulls them off poor Calista’s feet.

I think that the new dialysis regime is doing something as Jasmine has been waking up at 6am instead of 5am. That extra hour is just magic, as are my girls! (And Neil of course!)

Jasmine had her line changed today at GOSH. The titanium connector has worked very well and lasted seven months without any problems. The line has to be soaked in Bettadine for three minutes before the catheter can be changed, to minimise the chance of infection. The risk is low, so we don’t have any prophylactic antibiotics this time. I held Jasmine during the line change and our lovely nurse clinician very kindly made Ruth a cup of tea (who was a bit teary after a big transplant talk) and was very encouraging about the way we care for Jasmine, which was just what we needed to keep us going in this busy week.

Jasmine’s dialysis volumes have been increased again, to a fill volume of 500 mls, so she needs three dialysis fluid bags a night, rather than two. This means that our next delivery will be bigger, but since we are using the dialysis boxes as furniture in the living room that isn’t a problem.

We walked all the way to UCH for an ultrasound scan for Calista, as Ruth’s hip is much better now. They couldn’t see any problems with Calista’s kidneys, so that is a relief. It is now six weeks since Ruth’s c-section, so she can start doing some exercise.

At GOSH we also met the transplant co-ordinator, who went into more detail about what we have to do pre and post-transplant. Jasmine needs a magnetic resonance venography (MRV) to check that all her veins are free from blood clots. She also needs another electrocardiogram (ECG) to check that her heart isn’t under strain. Post-transplant her blood pressure will be maintained at a higher level to match my blood pressure, and she will need at least two litres of fluids per day to keep it hydrated. This will put extra strain on her heart, but will limit the amount of tissue that is damaged in the new kidney.

We should be able to get hospital transport to and from our flat, as it is important not to go on public transport until the immunosuppressant regime is stabilised. This will make our lives a bit easier, as getting to and from hospitals with two kids can be a struggle, especially during rush hour and once Jasmine is discharged we will be going everyday for at least a month and then every other day and so on until we work down to monthly visits. Any infections could cause the kidney to start rejecting, and any changes in her bloods will mean immediately being admitted into hospital. If Jasmine or I have an infection pre-transplant, even the morning of the operation, it could delay the operation by months.

Jasmine had clinic down at Great Ormond Street on Monday. There were lots of changes this week. Her length (71 cm) and head are still on the 0.4th centile, but she has been putting on a bit too much weight around the middle, so the dietician cut back on the glucose supplements. She is about 9.5 kg which is 21 pounds.

They had some new products in clinic. We tried out the CATHcarry exit site dressing. You can see the exit site through a clear window, which is a bit freaky. There is also a loop on top of the dressing that is supposed to hold the catheter safely. However, it just seemed to give Jasmine something to grab hold of and she instantly started tugging off the dressing. The dressing would need trimming down for Jasmine, and we lost 1 hour 25 minutes of dwell time overnight, so we are going to stick with the cutiplast dressings that we are used to.

Jasmine’s blood results show that her Parathyroid Hormone is high (higher than her normal chronically high level), so her calcium-based phosphate binder has been increased, and her one-alpha vitamin D supplement has been decreased. The doctors are always closely monitoring these levels. This is a common problem with peritoneal dialysis, and is difficult to manage, especially in babies. Jasmine has to go for a neck ultrasound to see how these imbalances are affecting her parathyroid. These problems should all clear up after transplant.

Jasmine’s dialysis program has also been changed as her surface area has increased. She is still on 12 hours a night, with 9 dwells, but her fill volume has been increased to 450 mls, and her last bag fill is up to 250 mls. Increasing the volume causes Jasmine some extra discomfort, and she took a few days to get used to the change. She has been waking up at 5am vomiting and screaming every morning now, for several months, whatever the program, so we take turns to get up and see to her.

Jasmine is also due for a line change on her catheter, as it has been on for six months. We have to go back to GOSH to have the catheter changed. We will probably have to do prophylactic antibiotics for two days, to prevent against infection.

Calista is doing well, sometimes sleeping through the night to 5 am. She is putting on weight, and is up to 5 kg (11 pounds). She is starting to stay awake a bit through the day and is looking about at lights and peoples faces and smiling. She has had various rashes, nappy rash, prickly heat spots on her head, and rashes around her neck where she dribbles, but otherwise is doing well. We are taking down to UCH this week for an ultrasound on her kidneys. Her blood results came back fine last week, after our last check up there, so that was a big relief. We also registered her at the nearby town hall after our visit.

Ruth’s hip is much better and she only has to go to the chiropractor every two weeks now. She has her six week check up next week, and will hopefully get signed off, so she can start doing some exercises, and strengthen her back.

So, we will be a little busy this week as we have to go to UCH for Calista’s ultrasound, then GOSH for Jasmine’s ultrasound, then the GP for Ruth’s six week checkup and I have to go to the chiropodist, then back to GOSH for Jasmine’s line change and a chat with the transplant co-ordinator, and then off to the baby clinic for Calista’s six week check-up. We also get our monthly Baxter delivery of dialysis fluid and the other medical supplies, and we will get a new food pump from Abbot, which our PCT has decided should replace the Fresenius one.

Thank you everyone for all the lovely presents for both girls. We very much appreciate them.

Busy has taken on a new meaning with one new baby and a toddler (well in a babywalker) on dialysis. We had appointments every day this week: three visits to the chiropractor, one newborn hearing test, Jasmine’s second MMR, and our monthly dialysis delivery. To say nothing of an endless round of midwife and health visitor home visits, who promise they will come early morning and then don’t and make you stay in all day. We also squeezed in trips to the chemist for hand cream and bandages and the doctors to register Calista.

The weather has been lovely, but it means that we have to do all our dialysis chores in the morning as the flat gets too hot in the afternoon (average temperature 28o c). Calista is settling in nicely and is sleeping five or so hours in the night. Jasmine has been learning how to do stickers in her ‘In the Night Garden’ book (thanks to Auntie Claire and Uncle Iain), and has been applying her new knowledge to peeling stickers off the bus which indicate where people are supposed to put their wheelchairs.

After much research (i.e. stopping strangers in the street), we have decided against a double buggy. They are too heavy, too wide, you can’t go down the tube steps, on the bus, or in a black cab with them, so we have bought a second single buggy and now go everywhere in convoy. We now need a couple of walkie talkies to complete the convoy effect, so we can shout 10-4, 10-4, at each other, or whatever it is you say. Jasmine keeps leaning over to grab the other buggy, causing the wheels to get locked together, so now we have to go in single file. I laughed so hard the other day about being in convoy that I thought Neil was going to cross the road and leave me.

My scar is healing up nicely, and I am walking better thanks to the chiropractor. My legs are now the same length again, which is a good thing. It never occurred to me that I was limping because my right leg was shorter, I thought it was just that I was in pain. Calista’s navel has healed up, and Neil’s wrists are looking a bit better. I have been doing the exit site and injections so the poor man only has to wash his hands in surgical scrub for 15 minutes a day instead of the usual 20 minutes. This week I am going to start doing the machine to give Neil a break.