Jasmine Stalker-Firth

When I arrived this morning Jasmine was having her bloods taken for her operation tomorrow morning. They will fix her plumbing, remove her nephrostomy, fix her hernia and put some stitches in her peritoneum on the other side to prevent a hernia there. Jasmine looked happy enough having her bloods done.

Early afternoon Jasmine pulled her NG tube out so she had to have that put back in. She was due to go on dialysis at 3pm but her blood pressure was low, which can be a sign of dehydration, so her dialysis was delayed until after her 6pm feed when her blood pressure was higher. Jasmine had vomited in the night and after her morning feed so today she was a bit sleepy.

Jasmine loves the ceiling in the hallway of the ward. It has a nice blue sky and strip lights. She likes the light. So walking in this morning I got very excited about the idea that one day we will take her outside the hospital so that she can see the sky.

This morning we met with the consultant who will look after us when Jasmine eventually comes homes and becomes an outpatient at the dialysis clinic at GOSH. From now on we will sit down with her every week to ask questions about dialysis and Jasmine’s progress. The consultant told us that when Jasmine has her operation to sort out her plumbing they will fix her hernia at the same time. We were a bit surprised that Jasmine has a hernia, as no one had told us. Hernias are very common in newborn babies, especially those ones on dialysis.

She also explained why Jasmine needs to take calcium carbonate and magnesium carbonate with some of her feeds: Jasmine needs calcium carbonate to bind with the phosphates in the milk so that the body gets rid of them and her phosphate level doesn’t climb too high. The downside of this is that whilst calcium is good for her bones, calcium in the blood can harden her arteries. Magnesium carbonate binds with the phosphates and also lowers serum phosphate levels.

We give Jasmine her medicines in little syringes in her mouth. She takes most of them quite happily apart from the magnesium carbonate, which makes her baulk. One of the nurses said that the magnesium tastes like chlorine in the swimming baths, so it is hardly surprising.

After our meeting I disconnected Jasmine from her machine for the first time. This was nerve wracking but I am glad that I did it. Tomorrow I will be connecting her to her machine. Whilst I fed Jasmine, Neil went to the treatment room to set up her machine for the first time. Once her machine was ready and she had finished her feed, Neil and I went downstairs to learn how to take a sample direct from Jasmine’s catheter. It uses a special adaptor so we practised putting that on and off and picking it up in a sterile manner.

By this time it was lunch so Neil went off to work to eat at his desk and I had a quick lunch and then went back for more training. I learnt how to set up the dialysis machine when we need to use different strength dialysate bags and how they are connected to a supply bag. Then I learnt how to take a sample from the machine.

At 3pm I wandered back upstairs to give Jasmine her feed and then, under the supervision of the nurse, changed Jasmine’s PD dressing. I managed to touch the top of the tap and also the side of the cot whilst trying to stay sterile so I had to redo my handwash.

Once I finished with the dressing I went back downstairs to learn about the dialysis machine alarms and what to do for each one. This took up to the next feed so I went back upstairs and had just started feeding Jasmine when Neil arrived. We were quite calm this evening and tiptoed off once she was settled but still awake so that we didn’t prod and poke her and make her overtired.

Jasmine’s drain bag was clear this morning, which seems to indicate that her lymph system is healing. Tonight Jasmine will be given breastmilk for her continous feed and the amount should increase too, as she guzzles her milk and is hungry well before her feed time.

It was a lovely day today. I arrived in time to give Jasmine her lunchtime feed and then after a bit of a struggle I managed to get her into her sling with help from the nurse, and took her downstairs for lunch. After lunch we went for a look around the chapel downstairs and then wandered back up in time for her next feed. Then I left her sleep whilst I went to set up her dialysis machine.

When I got back she was awake so I picked her up and she managed to impressively poo down my top and leg, through her romper suit and nappy. It took quite some time before we got tidied up and could sit down to read the TLS together. Jasmine wasn’t impressed and began to cry so I took her into the corridor as she likes to look at the lights on the ceiling.

She dozed a little before Neil arrived and wrestled her out of my arms. Phil came to visit too. We did all of Jasmine’s observations, drugs and feed in good time this evening but managed to swing her round lots until she was overtired and wouldn’t sleep. It took ages to get her settled.

As Yogi Berra would say. The nephrostomy started to leak again today. It will be great when Jasmine has her operation and she no longer needs it.

We had a nice day. We watched the first half of the Boro v Man U match in the canteen downstairs. Then we went back upstairs for the second half as it was time for Jasmine’s feed. Feed times are much nicer now that she is enjoying her breastmilk.

After the match, Neil changed her PD exit site dressing and I set up her dialysis machine so we felt that we deserved a tea-break. We took Jasmine back downstairs for another cup of tea until it was time for her last feed and observations.

The only worrying thing is that during the night Jasmine’s machine alarmed several times to say that she was filling slowly. This could be due to fibrins (stringy bits) in the dialysate, though her fluid this morning was clear. The nurses are keeping an eye on it.

Jasmine was totally into her feeds today because she was back on breast milk. They had taken a sample of her peritonium dialysis fluid last night and it didn’t have any lipids in it. So, for now she will continue on breast milk. This is good news, as she takes her feeds all orally and enjoys them. She was even back into sucking on her dummy, so it seems that she just hated the monogen and didn’t want it.

Aarti came for a visit bringing lots of chocolate and a lovely dress for Jasmine (thanks Aarti). We met Aarti in the canteen with Jasmine and later on when we went back to Jasmine’s room Aarti was cuddling Jasmine.

At the end of the day Jasmine was tired but refused to sleep and kept whingeing everytime we put her back in the cot.

It was the end of a tiring week. I was glad that it was Friday so I can have a bit of a lie in tomorrow! Ruth set up Jasmine’s dialysis machine again, and was much more confident with it. She also had a go connecting and disconnecting teddy again. I changed Jasmine’s PD dressing for the third time, and each time it gets a bit easier.

Jasmine has been changed back to breast milk during the day, as the monogen concoction is making her vomit. She is still on monogen through the night. They think that the chyle and the infection have both cleared and they want to get her growing. Her white count was 1 today, so that is good.

Later on Trish came to visit bearing more gifts including some really nice hand cream for after those handwashes (thanks Trish).

Today we registered Jasmine’s birth. She is official. They use fountain pens to sign everything because they use ink which never fades.

The nurses took a sample from Jasmine’s dialysis fluid last night, and her white count is back down to 2, so this latest case of peritonitis seems to be under control, which is good news.

I set up Jasmine’s dialysis machine this afternoon, which was nerve-wracking as I was actually setting up a machine that our daughter would be plugged into later. Afterwards, I felt really glad that I had done it. It is another step towards us taking care of our Jasmine.

Afterwards, the nurses and I worked out a daily routine with specific times for feeding, bathing and dressing changes so that as each shift changes over, Neil and I can stay with the same routine.

Sarah visited later with lots of lovely smellies for Jasmine and for us (thanks Sarah). Sarah’s Grandma also sent a soft blanket which she knitted (thank you Mrs Vincent). Unfortunately, Jasmine christened it by being sick almost immediately. We are washing it this evening and will try again tomorrow.

Kelly Rowland, from Destiny’s Child visited the ward this morning. She wanted to hold Jasmine but since we weren’t there, she couldn’t without our permission. One of the nurses pointed out that this was just as well. Had Kelly washed her hands? Can you ask pop stars to wash their hands and wear a plastic apron and latex gloves? Apparently, she was very nice and sat and chatted to the older kids as well as signing autographs.

Jasmine had her bloods taken.  The doctor asked me to close the curtains and turn out the lights, which was slightly worrying.  However, she just took Jasmine’s arm and scanned it with an infrared light to find her veins.

This afternoon, Jasmine had her brain scanned. This was to check that her droopy eye and lip smacking are only symptoms of dialysis – too much or too little fluid. She slept through the ultrasound and the cold gel on her head and only got upset when she filled her nappy on the way back up in the lift. She is my gorgeous strange girl.

Under supervision, I changed her PD exit site and that was good as I felt less frightened of it. Although, I did have to wash my hands for six minutes as I managed to touch the sink after the first three minutes hand wash. Jasmine was brilliant throughout the whole thing. She didn’t even flinch when I was pulling off the large waterproof dressing. Neil and I both took her blood pressure too.

She was put on dialysis early today and the nurses took a sample which was clear and sent it off for analysis. Hopefully, they have caught whatever infection it is. Jasmine will be on antibiotics for two weeks.

Jasmine wasn’t sick at all today, which was good news. She even had an extra feed, because we got a bit muddled up again with times. This could explain why she wasn’t too excited about her feeds and had to have quite a lot through her tube today.

Now, when I put her up on my shoulder to wind her she puts her arm around my neck and pants little hot breaths onto my skin. It is wonderful. I spent most of the day winding her.

I went back to work today. That was a big change after weeks of going into the hospital every day.

Ruth had a tough day at the hospital. Jasmine was sick, and wouldn’t stick to her routine. She had to have her NG tube repositioned, which is always distressing. Also, there wasn’t an opportunity to do any training. Jasmine is still on continuous dialysis with antibiotics. She will be taken off dialysis at 6am tomorrow morning. They will then take a sample of the fluid from Jasmine’s peritoneum and send it off for analysis to check that the antibiotics have worked.

I came along after work and changed Jasmine and gave her a feed. She took all the feed, despite it being a monogen, liquigen cocktail. Jasmine has rather sunken eyes today, and a sunken fontnelle, indicating dehydration.