Jasmine Stalker-Firth

Today we arrived at the NICU to find Jasmine off the ventilator and breathing by herself. This felt like nothing short of a miracle. She opened her eyes when we got there and stared at us. We watched her as she wriggled and squirmed and frowned and cried and laughed and smiled. So many expressions and the first time we could see them, as it was the first time we had seen her awake.

One of the nephrology specialists came and introduced himself and said that, if all goes well, he would see us tomorrow as they are transferring Jasmine out of NICU into the nephrology ward. Her right kidney is producing some urine which is a positive sign, and her creatinine levels (of which too much is a bad sign) have plateaued out.
We spent the rest of the afternoon holding her hand and watching her. We fed her a couple of times through the tube in her nose and took part of her cares.

So I was a bit weepy yesterday but feel useful as I can pump lots of milk which is filling up the NICU freezer. We got down to the NICU quite early so we could be part of Jasmine’s ‘cares’. This is when she gets a wash. So we washed her eyes in nice saline solution to remove any sleep and then we changed her nappy but unfortunately set all the alarms off, as she was wearing lots more drains and lines yesterday as part of constant monitoring and care she has. Marion was looking after her and was very patient with us as we caused havoc with our ‘caring’.In the afternoon Jasmine had a blood transfusion and we left the ward and went to sit in the chapel so that they could do it without us stressing. It was just as well because when they removed the line from her umbilical cord a fountain of blood squirted out and we would have been totally useless at witnessing with this, even though it is a common occurance.

She is producing urine of sorts from the right kidney, but they are monitoring her blood to see how much good stuff she is losing in her urine.

We sat with her until about 6pm and then came home. She is wearing the nappies we bought so she is wearing something of ours. She can’t wear clothes because of all the monitors.

I slept better than the night before as I had been dreading the talk from the consultants. Neil woke up worried after finally getting some sleep and phoned NICU to find out that Jasmine had been put back onto the original ventilation mode (they had been trying different modes to encourage her to breathe better) and was able to take about five breaths a minute herself.

We couldn’t get a taxi so I decided to brave the tube. On the way Juliette, who was looking after Jasmine that day, rang Neil to tell us that Jasmine was being taken downstairs for a scan and not to panic if we arrived and she wasn’t there.

We hopped on the tube where I was accosted by a madman saying, ‘These things are sent to test us!’ about the TFL staff he wanted to ‘deck’. It seemed a nice message although I don’t have a problem with the TFL staff at all. Lucky girl that I am, I get advice from people on the tube at least once a week.

Jasmine was downstairs when we arrived so we went to the midwife centre that runs Monday, Wednesday and Friday. GOSH thinks of everything and really takes care of parents. This midwife was very comforting and made me feel much better about my bruising.

When we got back upstairs Jasmine was back, wiggling her feet, and waking up from the drugs that she had been given whilst having her scan. She was passing more urine through the drain from her right kidney, and was on drugs to encourage that and to try to take fluid off her lungs. She had already begun to look a little less puffy.

I was feeling better and tired of going from our flat to the hospital without seeing anything so we got the tube and Neil made me sit down every five minutes. The family support nurse chatted to us about facilities at GOSH and turned out to be from the same place near the Boro. Becky was looking after Jasmine.

In the afternoon we sat down with two specialists who told us the news we had feared. Jasmine has no kidney function on the left and barely 1% functionality in the right kidney. Some fluid is draining from the right kidney, but it is not working well. In a best case scenario Jasmine is looking at a future of dialysis and kidney transplants, if her lungs recover.

We were able to hold Jasmine’s hand and help feed her through a tube. She was on fewer muscle relaxants and able to move her head a little as she was waking up from the various drugs. Every time Becky came over to look Jasmine stopped moving, rather like Andy from Lou and Andy in Little Britain.

Jasmine was moved off the oscillator venatilator, which kept her lungs inflated the whole time and just `fluttered’ air back and fort, and onto a regular ventilator. It is easier to move patients on a regular ventilator, as they can be hand pumped as they are wheeled around the hospital.

We got a taxi back in the evening, had a good dinner and I got an early night. Neil stayed up, reading about kidney dialysis on the web and consequently didn’t sleep at all.

A midwife rang up from UCH at 9am and asked me if I was coming in for my caesarean today. I said that I had already had one, after I had been transferred from their hospital in the middle of the night, and that all that excitment was enough. I lay in bed for a bit as Neil had to go on a a milk run to the NICU as Jasmine was running low on breast milk. Neil was out for a while as he did some shopping on the way back.

In the meantime, a midwife from the Whittington came to visit me, but a lot of her advice was tactless and irritating, especially when she said that she had never seen bruising like it in her life and she had been a midwife a long time (thanks). She moaned about how she had had to come round and not phone me because I hadn’t left a telephone number with Homerton hospital. Then having shown her a picture of Jasmine (at that point I only had two pictures), she drew on one when she was explaining (incorrectly) what all the lines were. She then left me a telephone number that didn’t work and wrote on the back of my hospital discharge form which we need to register Jasmine’s birth. She left me upset pondering on the reasons why she could she not bring her own paper and not write on things which don’t belong to her.

After lunch we got a taxi to GOSH. Later in the evening we got ‘the chat’ from the consultant about how Jasmine could die and we should be prepared for that. Lung trouble alone could kill her without all of her kidney problems and that she was very lucky to be alive.

We got a taxi home, exhausted.

Jasmine survived the night, but had to be put on nitrous and oxygen, and a lot of ventilation. She was also on morphine and paralysis drugs. I then packed Ruth’s bag (!) as she was convinced on the Sunday that UCH would send her home. I then went to visit Jasmine in NICU where Juliette was looking after her.

Afterwards I went to Homerton to find my parents visiting Ruth. The surgeon said that Ruth could go home due to the circumstances as she had had a long night listening to babies crying and being monitored by the staff to check all was ok.

Later that evening we got a taxi to GOSH to visit Jasmine. I got an update, while Ruth was worrying in the parents’s waiting room. Ruth got to touch Jasmine for the first time. Ruth said that Jasmine was very beautiful with lots of curly black hair and very long piano-playing fingers. We stayed ten minutes then got a taxi back home.