Jasmine Stalker-Firth

We arrived early this morning to give Jasmine her first bath. We used the lovely Neal’s Yard baby bath set that Sarah had given us. Jasmine cried a bit at first and then she seemed quite happy to sit in the nice smelling bath whilst we splashed her and posed for pictures. Once we dressed her, Jasmine and I waved Neil off to work.

At lunchtime Jasmine and I went to Carluccios for lunch. She liked the red walls and the bright sparkly lights. After that we went to see the Elgin Marbles and the Near Far East section of the British Museum. She wasn’t too impressed and fell asleep but did enjoy being pushed around in the buggy again.

This afternoon Grandma and Grandpa Firth took Jasmine and I for a coffee in Costa, which was very nice and we got back upstairs just in time for Jasmine to get weighed and measured (3.3kgs and 54.5cms). Then Neil turned up to give Jasmine her evening feed, after which she went straight to sleep.

We arrived early this morning to have our weekly meeting with the dialysis consultant and were early enough to feed Jasmine. After that Neil went to work and our home liaison nurse said that my training this week was about baby things, in particular going outside and having a bath (not together of course). So in no time at all Jasmine and I were kitted out with a buggy and feed, medicines and nappies.

Jasmine and I hopped on the bus (and met a lady who was very excited about Jasmine, even though she had her own big baby) and went to the city to meet Neil for lunch. I was so excited that I ended up waiting outside the office he worked in a year ago and Neil had to run across the city to meet us. We had a tasty curry lunch in Tiffinbites and Jasmine enjoyed being made a fuss of by everyone in there. Vegetable biryiani made a change from paninis. Afterwards, Neil went to work and Jasmine and I walked back to the hospital. Jasmine took the whole trip out in her stride and was the chilled baby she is always.

After lunch Jasmine and I had an afternoon nap. The nurse looking after us today organised me a huge recliner so I was able to have forty winks too. This evening, Jasmine went straight to sleep after her big day out and didn’t even mind me squirting her medicines in her mouth. She is still off dialysis whilst her surgery heals.

When I arrived this morning Jasmine had been enjoying herself in the ward buggy. She was pushed up and down by one of the nurses and had been sitting by the nurses’ station watching the world go by. She was a bit grizzly today which could be either because she is still sore from surgery or because she is feeling the effects of not having dialysis (her creatinine level is 319). Everytime I put her down, she would cry so I ended up wandering about the hospital with her sleeping on my shoulder.

She is feeding well and is managing to latch onto the breast too.

We arrived today and Jasmine had already finished her feed. So she was all ready for cuddles. We took her downstairs for lattes and paninis and she fell asleep inside Neil’s jacket and was very happy wearing her new bout’chou suit (thank you Pascale, Nordine, and Charlotte).  We came back up to watch the football in Jasmine’s room.  It was all very exciting but Jasmine managed to snooze right through the two matches.

Jasmine’s hernia stitches are looking good and healing nicely. She is still off dialysis and the doctors are monitoring her bloods, in particular her creatinine levels. Her urine output volume is good (but of poor quality). She hasn’t swelled up as her fluids are being carefully managed. We weighed her this evening and she is 3.28kgs. She is about 52cms long (possibly longer as we haven’t looked at her charts for a couple of weeks).

Today we both managed to take her blood pressure individually without any help. This involves holding the doppler on her wrist with one hand and holding the manual sphygmomanometer in the other hand. Manual blood pressures are more accurate than automatic ones.

I did my yoga this morning for the first time since the caesarian and it felt good.

Today we put Jasmine in a dress for the first time and took her downstairs for afternoon tea. It is so much easier to get dressed now that the nephrostomy has gone. She was less tired today and stayed awake for several hours.

Her kidney is producing urine again but it is difficult to measure how much now that it goes into the nappy. They are regularly checking her blood to see how she is managing off dialysis. But the consultant said she was looking good.

Neil went to see Jasmine before he went to work. She was sleepy today but took her feeds well even if she did fall asleep in between mouthfuls. She didn’t seem to be in pain. She is on paracetamol which comes in a strawberry flavoured syrup which she quite likes. She is staying off dialysis over the weekend to help her heal. So, her feed has been concentrated and reduced to 50mls every three hours to help her manage her fluids. Her kidney was in shock after the operation so she was put the diuretic furosemide to encourage the kidney to produce its usual urine and more.

I finished my PD training today. The next step is to practise more and become confident.

Neil arrived at 8.30am this morning and the nurse took Jasmine off dialysis and weighed her. Jasmine was grizzly and so Neil nursed her and gave her the dummy. She got called down to surgery at 10.10am so Neil carried down in a blanket and held her on his lap until the anesthetist put Jasmine under. Neil went to work.

I arrived at the hospital around 2.30pm and Jasmine was back on the ward sleeping and doing quite well. She didn’t need any oxygen and was breathing fine by herself. She started to wake up about 5pm and had some milk. Then she vomited and went back to sleep.

The doctors came round and seemed pleased with her progress. She will be off dialysis for several days whilst the hernias heal up.

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.