Jasmine Stalker-Firth

We did more training today. I set the dialysis machine up from scratch, and am getting more confident with it. I connected, and disconnected the teddy bear. We also did some training on different types of infections and peritonitis, and how to recognise potential problems. It is essential that we take her temperature and blood pressure twice a day, and check her dialysis waste bag for cloudiness.Ruth did her first dressing change on the catheter exit site. Jasmine was very quiet as she had just finished a feed. She hardly cried at all as Ruth pulled off the old dressing, cleaned the exit site, and applied a new dressing. (Ruth: I cried more than Jasmine) We have to change the dressing every other day, and check for signs of infection.

Jasmine pulled her NG tube out again today. She is getting really fast. We turned round for two seconds and she had grabbed hold of it and pulled it out. We gave her all her feeds and meds orally through the day, but she will have the tube put back in overnight.

Jasmine was 3.005 kg this evening, but she had just had a feed, and was retaining some water, as her dialysis schedule was shorter overnight. The target is to put on 150g or 200g a week. Currently she is putting on 50g a week, so we have to increase that. The idea is that if she is on a continuous pump feed she won’t wake up in the night, and won’t waste energy crying or sucking on her bottle.

A five day old boy arrived on the ward today. Jasmine is no longer the youngest child.

We arrived today at 12 noon but the nurse had already fed her for her 12 noon feed, so I felt a bit disappointed that we had missed out. Then we met a mum whose son is now 14 years-old but was born with kidney failure like Jasmine and had gone through dialysis and got a kidney at two years-old. She was lovely and encouraging, saying that we would get used to it and organise the medicines and dialysis around our lives.

After that the counsellor popped in but we were on our way to lunch, with Jasmine in the tri-cotti sling. We decided that lunch was our priority but we will see him at some point. For the time being though we are doing our best to eat and sleep well and that takes us a long way. Neil also made me walk up and down the tube and hospital stairs today as the first step (or 175 steps) back to fitness, after my operation.

We were just eating our lunch when Grandma and Grandpa Firth arrived. They had baked us a lovely Victoria Sponge Cake with fresh cream (my absolute favourite). Neil has just eaten a rather large slice whilst I am typing this and says he feels a bit sick. Greedy man, my slice was just the right size. Anyway, after that we went back to the room and fed Jasmine. We took her blood pressure and temperature and then we had to go off for training so Jasmine got cuddles from her Grandparents.

Today in PD training we learnt how to disconnect a patient from dialysis. I set up the dialysis machine and then connected the teddy and then disconnected him. Neil will practice this tomorrow. Having been through the whole cycle I feel more confident and less afraid of what dialysis means. The main message I took home today was to do the three minutes handwashes thoroughly, confidently perform the tasks in the same order so that you become comfortable and familar with the routine, making sure that you don’t rush or panic so that you don’t inadvertently touch anything you shouldn’t.

Jasmine isn’t growing as fast as they would like so tonight she will be put on a continuous feed over night. This means that she won’t have to wake for her feeds and she will take them all through her tube. In this way she will use up less calories, not vomit any feeds up, and finish all her feeds. They have also decreased the number of cycles she needs during dialysis. I can’t remember exactly why this helps, we did have it explained to us but have forgotten. We can ask again tomorrow.

This morning I had to go for my six weeks check-up at Homerton hospital. They lost my notes and wrote on the letter I had brought because they thought it was scrap paper and didn’t tell anyone that I had arrived. So, after an hour of sitting with pregnant women and new mums glowing with their babies – all with working kidneys – I burst into tears. When asked if I wanted a drink of water I said that I wanted my appointment, which I got two minutes later. They were very apologetic for their incompetence but by that time I was beyond consolable and forgot to ask the questions I wanted to and just got out of there as quick as possible. So I am no wiser than before I went and wasted a whole morning. My scar is pretty small though and it is amazing to think that Jasmine came out of there.

I came back to GOSH and my lovely family and we went for lunch, but Jasmine was hungry and wouldn’t settle, so we made it quick and took her back upstairs for her feed. Later in the afternoon we took her back down to the cafe for a cup of tea when she had been fed and changed and Neil wore her in his homemade Tuareg sling, which is actually a turban that Neil used to wear when he was in Niger. She was very happy, but then who wouldn’t be snuggled up near Neil’s chest?

Andy came for a visit and brought Jasmine a baby music centre in the shape of large underpants, which we strapped to the cot and admired. Andy is thinking of getting himself one to wear during his Brazilian Jiu-Jitsu, which he will no doubt perform on me when he reads this! Thanks for the music centre, Andy.

Today, we learnt how to wash her PD catheter exit site with a non-touch technique, which we will be doing every two days. It needs to be wiped with antiseptic, then sterile water, and then dried. The catheter is wiped with antiseptic and then a clean, new dressing is applied over the area, and then a waterproof one over that. Jasmine didn’t complain much and was quite happy afterwards.

Oh yes I am totally getting into the plinkety plink CD and might have to get a copy. It is called Classic Chimes, and is well catchy. Jasmine and I were listening to it all yesterday afternoon.

Jasmine is losing her hair at the front. We might have to organise some sort of comb-over for her as it is still long at the back. As it was Easter Monday, the hospital had a quiet weekend feel to it and we had a calm day cuddling Jasmine in her room.

Jasmine’s feed has been increased to 61mls every three hours, so that she can put on a little bit of weight. Her weight has crept back up past her birth weight so it is 2.845kgs and it looks like proper fat. However, with dialysis it is difficult to know whether it is just fluid. But we think she might be starting to fill out.

She had a little vomit when I gave her a syringe full of sodium bicarbonate. Normally she is ok. We laughed as some of her medicines do sound like cooking ingredients. We keep waiting for the syringe of 1ml of hundreds and thousands.

We gave her the 7pm feed early so that she wouldn’t vomit when she was put on dialysis at 7pm. However, she had trouble finishing it and fell asleep so we had to put half of it down her NG tube. I have stopped worrying about the tube, I just want to her to fill out and grow.

It was quiet on the ward today. Jasmine had her feed increased from 52 to 58 mls every three hours. She hasn’t put much weight on so far, and needs to build up. She was feeding well all day, but was sick at 7pm. She had just been filled up with 170 ml on the dialysis and the extra 50 mls in her stomach seemed like too much volume.

We took Jasmine’s blood pressure twice today, under the nurse’s supervision. The first time Jasmine got upset and we couldn’t hear her pulse on the doppler over the sound of her screaming. We had to redo it later. We also took her temperature.

The nurse was telling us some more about the dialysis training today. When Jasmine is ready, in a few months, we will go to ‘D’ side of the ward, and stay for a few days. We will be responsible for Jasmine’s food, medicine, dialysis, fixing alarms during the night, etc, but will be able to get a nurse to help us if we need to.

So we arrived today to see that Jasmine’s feeding tube was back in her nose. I was a bit sad but then it is really whatever works. She is still beneath her birth weight because she has been retaining fluid after her dialysis and when she has a fill, that is when they leave fluid in during the day, she absorbs that too. So they have stopped the fill and she has now dipped below her birth weight again. She is starting to fill out around the face though, so hopefully she will continue to put on weight.

Her nephrostomy was leaking again today and an urologist came up to check on it. He said it was ok for now and the nurses are keeping an eye on it. We took Jasmine for another coffee downstairs today and that was lovely. She likes the sling and snoozes quite happily in it. I like the sling too!

Tonight she just wouldn’t go to sleep. We changed her nappy, nursed her and kissed her. But she wouldn’t close her eyes and kept screaming. Apparently, she wakes up for her three hourly feeds during the night and screams for them too. So we were wondering whether she knows now that between 7pm and 8pm we get ready to leave her and go home. Eventually, we got her to go to sleep by playing her some mad soothing music CD collection a nurse had left in there the other day. Jasmine calmed down and fell asleep to a plinky-plinkety tune. As I said: whatever works.

Today we both successfully took Jasmine’s blood pressure and were very proud. She wriggled but didn’t get upset as she does sometimes. So, the more practice we get the better we will be, as we will be taking her blood pressure twice a day when she comes home.

We also discussed her feeds with the nurse who increased her day time three hourly feeds by 10mls and decreased her night time ones by 10mls, as Jasmine sometimes struggles to finish her feeds at night and is often hungry during the day. We don’t want to have to wake her and force feed her food she doesn’t want at 4am every morning!

It was a quiet day today and I felt much better after yesterday. We fed Jasmine and changed her and she was sleepy and nice, but I couldn’t help myself and kept hugging her and stopping her from going back to sleep. In the end I had to put her back in her cot so that I wouldn’t disturb her.

Jasmine likes her new SigiKid Cheese Mouse, it helps her doze off and she seems to stare at the big cheese. Thank you Auntie Claire and Uncle Iain. We are saving the lovely dress until she is a bit bigger and can fill it. She has also got another lovely dress from Andrea, Sean and Callum and says thank you very much.

Jasmine was sleepy today, and didn’t need to have anything nasty done to her. We were just taking care with her nephrostomy line. It has been leaking a little bit again. Jasmine needs a specialist anethetist and surgeon, as she is a baby, so she can only be scheduled in a particular operating theatre. That is why she is waiting for confirmation of a time for her operation to remove the nephrostomy.Jasmine is receiving lots of gifts and got some natty romper suits today. They are the right size, so aren’t dwarfing her. She was looking very cute again.

We were honing our blood pressure skills again today, and paying more attention to how her blood pressure, weight, and fluid clearance are all interrelated.

Ruth: Tonight I was feeding Jasmine whilst she put on dialysis and having her blood pressure taken at the same time. She kept screaming everytime I pulled the bottle out of her mouth and tried to wind her. So, in the end I let her guzzle the lot and then shortly after I had changed her and got her settled for the night, she threw up the majority of her feed. I feel like a terrible mother and have spent the whole evening feeling guilty.

Today we took Jasmine down to the Costa Coffee place in the hospital on her first trip out of the ward. It was such a lovely feeling to be doing something normal. I had Jasmine in the sling and went and sat down whilst Neil and Grandma and Grandpa Firth went for the coffees and paninis. It was fantastic, but odd to be sitting without monitors, lots of equipment and nurses to call on at any given moment. I panicked for a second or two but then relaxed – after all surgeons, consultants and nurses are walking through the cafe every couple of seconds – and enjoyed holding my baby girl so close to me until everyone else came back.

Before lunch, Neil and I did more dialysis training. I set up the machine in the way we learnt yesterday and then we practised connecting and disconnecting the patient (a rather large teddy bear) to the dialysis machine using teddy’s PD catheter.

Later on Greg popped in for a visit and Jasmine demonstrated how she sometimes vomits after her medicine. It was just a little bit, so not too bad. She had been sick this morning after guzzling her food. She soon recovered to take the rest of her medicine and her feed. She is so clever! She was also sporting her new dummy which is now connected to her blanket by a nice ribbon so we won’t lose it. Neil braved Mothercare this morning but Jasmine didn’t seem that bothered about sucking on her dummy today even though we dipped in it glucose sugar.

The milk room told me to stop expressing so much as there is no room left in the freezer. I must say I am a tad relieved as I do seem to spend a lot of time with my breasts out, attached to machines.

Today we learnt how to set up the home dialysis machine and how to plug in the bags. There are two, as Jasmine is only small and on the weakest dialysis fluid, one which drains fluid from her peritoneum and one which contains the new fluid which goes into Jasmine. There is a cassette which contains the tubes which you connect the bags and Jasmine to, and this also contains an area where the fluid in and out passes through so that the machine can calculate how much fluid to put in and how much fluid is drained from Jasmine.

Just learning this first step has made me feel much better as I was having a bit of a wobbly day today and got quite upset when one of the nurses suggested incorrectly that Jasmine might have to have a gastrostomy (she doesn’t, as this would involve piercing the peritoneum).

Later, when we were getting ready to take Jasmine downstairs to the cafe her nephrostomy sprung another leak and then she wouldn’t settle and we couldn’t take her down in case the urologists wanted to look at her. At this point we discovered that Jasmine’s dummy had disappeared so we couldn’t give her anything to suck on so that she could go off to sleep. I became very upset. Neil took over calming Jasmine down and sent me off for a break. He was then stuck there with a screaming baby.

It is the small things like dummys or someone being insensitive, even when you know they are, which are upsetting. These are the things that really make you think that you are not going to make it through the day. Things that really help are learning how to do take blood pressures and setting up machines and getting on with getting on so that you don’t have time to get fixated on the small stuff.