Jasmine Stalker-Firth

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.

The training today was on hand washing technique. We will have to make sure we are very clean to avoid as much infection as possible when changing dressings and putting Jasmine on dialysis.

Jasmine had a small oxygen mask next to her as she slept because she is falling into a deep sleep and not breathing as she should. Apparently, this is quite normal for a baby who has spent so long on oxygen. However, the nurses are limiting her oxygen as her brain has to learn how to trigger the ‘need more oxygen’ switch.

Other than the hand washing and some taking our blood pressure practice, we had a quiet day. Jasmine was behaving like a normal baby which was very exciting. She cried a lot when she was hungry, had filled her nappy and was overtired. She stayed awake between feeds and liked to be held and now stares at her mobile as if she sees it.

This afternoon Jasmine pulled her NG tube out and the nurses left it out for now as it seems as if Jasmine is saying she doesn’t want it. We will have to see if the nurses need to put it back in to feed her.

Jasmine is now on 52mls every three hours. It is fortified with 4% SMA and vitapro. Her weight is creeping up steadily but the nurses have to take her blood pressure to see if it is actual weight gain or if she is retaining fluid. High blood pressure could mean that she is retaining too much fluid. Low blood pressure could mean that she is dehydrated.

Jasmine got upgraded to a bigger cot today. She no longer needs a heated cot. Her new bed is still pretty high tech. It tips up at the head, at the foot, and raises up and down parallel. It doesn’t tip up at the head though, as it is broken, so the nurses have switched it round! We just have to be careful with the electric control panel.

Otherwise it was a quiet day. Jasmine took all her feeds and was topped up on the breast. She was sleepy today, and vomited just once after her 7pm feed. The only time she was upset was when her PD catheter sterile dressing needed changing as she had pooed up it.

Jasmine’s Great Auntie Linda was asking about weight and height today: Jasmine is now 49.5cms long and 2.85kgs (born she was 47cms and 2.8kgs). Everyone’s main goal at the moment is to get Jasmine fattened up and to grow as much as possible.

When we came into the hospital today Jasmine was looking different. She had pulled out her nasogastric (NG) tube during the morning, so had her face free from tubes for the first time. She has put some weight on and is looking better. It was amazing to see her looking like a healthy baby.We took Jasmine out of her room again today. We put her in her tri-cotti sling and took up and down the corridor. Jasmine looked very snug tucked in.

Andy popped in today to say hello to Jasmine. At the end of the day they had to put the NG tube back in through her other nostril. Needless to say Jasmine was rather upset.

The registrar rang us early this morning to say that the renal and urology teams had discussed Jasmine’s case and they had a cancellation in their surgery schedule and were operating on Jasmine this afternoon. Unfortunately, by the time we got to the hospital the slot was no longer available and so Jasmine’s surgery has been postponed until next week or the week after.

It was an exciting day as Jasmine finally started breathing completely on her own. She has only been on 0.1 of oxygen but has needed it so that she doesn’t struggle when breathing. Today though she managed ok without it and it was really lovely to see more of her face. Jasmine off her oxygen means that we can leave her room. So we carried her into the corridor just to see what it was like and tomorrow we might even venture downstairs for a cup of tea, if she is ok.

We took in Jasmine’s new toys today. Gifts from Cris. She has a mobile with strong patterns in black and white and colour and a set of Lamazes wrist rattles and foot finders. Jasmine says thank you very much. She stared at the mobile as if she could really see it which impressed us no end.

This morning we had a visit from the nurse who looks after the children who do home dialysis. She looked at our flat to assess its suitability. Apparently, it is fine: we have taps that you can wash your hands under without touching the basin so you are sterile, and no damp or window drafts.

Later on this morning we had a chat with one of the urologists about removing the blockage in the tubes from Jasmine’s right kidney to the bladder and the various ways it could be done. The renal team think it is worth keeping the kidney and the different teams will be discussing her case tomorrow.

After that we got to feed Jasmine and give her cuddles in her new taggie blanket. She vomited a bit today and we had to shampoo her hair. She latched onto the breast which is amazing since she is bottle fed and after each feed she was happy snoozing on our laps.

Late afternoon we had a lesson on how to take blood pressures using a doppler and a blood pressure cuff and then spent the rest of the afternoon practising on each other before it was time for Jasmine to have her various observations and get weighed. We fed her again and she had yet another little vomit before she settled down to snooze.

Today the nephrostomy started to work again so there was no immediate need to do anything.  Jasmine went for an ultrasound to see if any urine had backed up into the kidney.  We will meet with the urologists tomorrow to discuss what they are going to do.  The options are: fix Jasmine’s tubes and blockages, or take the kidney out altogether.

Philip popped into the hospital and met Jasmine tonight.  She wasn’t at her best as she was screaming and in the middle of a nappy and dressing change.  Normally, she is quite chilled out and likes to lounge on our lap and stare a lot.  After her feed we sat her up to wind her.  She was swaddled in a blanket but poked her long skinny arm out with its red probe (her oxygen saturation monitor) and rolled her big eyes. She looked remarkably like E.T, so we were a bit disappointed when she didn’t say, ‘Phone home’.