Jasmine Stalker-Firth

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’.

Jasmine had a hectic day today, and not too many nice things to do for her one month birthday.

She was scheduled for the Newborn Hearing Screening test. However, this was neither quick nor easy. Jasmine was asleep when they started the test. After an hour of poking things in her ears and scraping the skin off her forehead to stick on electrodes she was very cross. The test was inconclusive and they wanted to try again on another day. It all sounds far more trouble than it is worth, so we’ll give that a miss.

Later in the day Jasmine sprang a leak. The nephrostomy bag that was collecting the output from the right kidney stopped filling up. Jasmine’s urine is leaking out of her side. We were obviously worried, but no one on the ward appeared overly concerned, so we are hoping that it isn’t too serious. The doctors have been discussing what to do about the nephrostomy for a couple of weeks, but this will no doubt bring plans forward. Hopefully they will be able to do something for her tomorrow.

Today we met the nurse in charge of the home dialysis programme at GOSH. She will be training us to take Jasmine’s blood pressure, and put her on the dialysis machine. She will be telling us how to prepare the machine, and what all the error codes mean. It is encouraging that they are planning that far ahead, as Jasmine will not be able to come home for months yet. We will need space to store the dialysis fluid, and somewhere to put the dialysis machine. The nurse will be visiting our flat to advise on the preparations.

Jasmine was taking most of her milk and medicines orally, and was looking about and sleeping and wriggling. There are still no signs of any infection, so hopefully the antibiotics have done their job.

We will also be meeting with Dr Rees once a week to check up on Jasmine’s progress, and ensure that she is growing well, and getting all the regular tests and immunisations she should.

Jasmine received a teddy from her cousins Cameron and Ewan and a lamb from Aarti.  Jasmine says thank you very much.

For the past couple of days Jasmine has been smiling to herself. She has a whole range of facial expressions but her latest addition is the smile. She can turn her head from side to side and tends to arch her back when you are holding her legs up to change her nappy.

Today, we had a lovely quiet day with her made up of feeding and nappy changing and holding her whilst she smiled at us – inbetween bouts of crying when hungry and being sick once.

Jasmine is getting into watching football on the television in her room. She was a bit down that the Boro lost today to Cardiff and she yawned a lot throughout the Wigan v Arsenal game.

Jasmine was on 34 ml of milk every 2 hours today. It is very important to keep her calories and nutrition under control, so her milk is being fortified with 2 percent of SMA gold. Some feeds she took immediately, others she wasn’t bothered. She was sick a couple of times, but her temperature and blood pressure were fine. She is now on a fill of 150 ml for the overnight peritoneal dialysis. This makes her stomach swell up rather bizarrely. We are getting more confident lifting her in and out of the cot. She is still on 0.1 of oxygen, a tiny amount.