Archive for February, 2008

A sleepy baby

Tuesday, February 19th, 2008

Neil holds Jasmine
Neil got to hold Jasmine for the first time today. He said that it was really nice but after holding her for a while he got cramp because he didn’t dare move. When we did get her back in the cot, we noticed some bleeding from the line in her left kidney, so her dressing needed changing. She was weighed again and was 3.3kgs, which means that she is retaining too much fluid.

Jasmine’s feed is up to 14mls an hour of breast milk. She is only on one drug to help her kidneys produce urine. The right one does, but not of a great quality. And the left one only produces blood, which is horrible to look at. She is on 0.2 of oxygen but she keeps pulling the tube from her nose so with any luck she won’t need it much longer.  She slept for most of today and it was nice to see her content after a hectic day yesterday.  Other than that there is no news today. We are all waiting and seeing so that the specialists can decide on the best course of action.

Thanks to everyone for sending us emails and texts and cards, we really appreciate it.

Neil: Transfer to the nephrology ward

Monday, February 18th, 2008

Holding Jasmine

This morning Jasmine was transferred out of intensive care to the nephrology ward. She has a little room to herself with a window looking out to the sky. Jasmine was awake and moving about. She had her eyes open and was looking around. It was wonderful to be able to look at her and have her look back.Jasmine has her blood pressure taken every hour, with a blood pressure gauge around her arm. She really doesn’t like that! As a parent it seems as if the nurses aren’t paying so much attention, and it is a bit worrying. Really this is good news, as in intensive care the nurses didn’t leave Jasmine alone for more than a minute. Now she is stable, so it is good she doesn’t need to be watched so closely. We spoke to the doctor and they are planning her fluid intake for the next few days. They want to support her kidneys for as long as possible, as there is still an outside chance they may recover some limited functionality with Jasmine breathing better.

She is very wriggly and kept pulling out the oxygen tube from her nose and the other lines that she has in, setting off the monitors. She also turned her head from right to left so that she could look out of the window.

Ruth got to hold Jasmine for the first time, which was very moving. She only held her for five minutes as we were worried about tangling up her lines. After we helped to weigh Jasmine, she is now 3kg, but with the lines it took a long time.

My parents came to visit Jasmine. Ruth had her stitches taken out by another very kind midwife, and her scar is looking much better.

Jasmine is breathing by herself

Sunday, February 17th, 2008

Jasmine off the ventilator

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.

A lovely day with Jasmine

Saturday, February 16th, 2008

Jasmine on Valentines

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.

Jasmine is drying out

Friday, February 15th, 2008

Neil with Jasmine

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.

Bad news

Thursday, February 14th, 2008

Ruth with Jasmine

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.

The chat

Wednesday, February 13th, 2008

Neil and Jasmine

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.

Neil at the Neo-natal Intensive Care Unit (NICU)

Tuesday, February 12th, 2008

Jasmine on Tuesday

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.

Neil: Transfer to GOSH

Monday, February 11th, 2008

Transfer to GOSH
I was waiting whilst Ruth was in the recovery room and Jasmine was rushed straight to the intensive care unit (ICU). I phoned the Grandparents to tell them that we have a baby daughter, who weighs 2.8kgs and is 47 cms long.After a while I was allowed into ICU to see Jasmine in her incubator. She was having trouble breathing and was on a ventilator. The doctors had had to remove a lot of mucus from her nose and force air into her lungs. The pressure had torn her right lung and she had air in her chest cavity. So they put a drain in her chest. I was able to look at the before and after x-rays of her deflated and then reinflated tiny lung. I then went to the Turpin Ward to find Ruth who looked well after surgery and was eating her dinner.

The doctor came round to explain to Ruth what had been happening down in ICU and told us that they were waiting for the CATS team from Great Ormond St Hospital (GOSH) to arrive.When they arrived everyone took a lot of time and care to stabilise Jasmine before putting her in the ambulance. I nearly missed the ambulance as I had nipped off to the toilet and they were frantically phoning me, ready to go!

I said goodbye to Ruth and collected her milk from the fridge and got into the ambulance with Jasmine, who was in a blue capsule on a trolley with lots of monitors. We sped across London with the blue lights flashing.

Jasmine’s birth 11th February 2008 1.23pm

Monday, February 11th, 2008

Jasmine on first night at Great Ormond St Hospital
I went into labour on Sunday morning – I didn’t realise it was labour because my pregnancy had been symptom free. It was just like crampy period-like backache with the odd twinge. I carried on as normal and then by about 8pm when we were round at a friends having dinner it seemed to get worse. Neil and I went home and phoned UCH who said come in immediately.We got the tube down there at 9pm and I was 2cm dilated and contracting every eight minutes. They wanted to schedule me for a section that evening but there was a big queue for surgery and I wasn’t that urgent as my contractions had started coming and going less regularly but more painfully. I was prepped for surgery but then at 2am they came in and said that there weren’t enough cots left in the intensive care unit for all the high risk babies and mothers, so as I was the fittest woman in the place they were transferring us to Homerton in Hackney – the only place with room.

At 4am we got an ambulance across town. There I was prepped again – canula in hand etc., whilst waiting in their queue (massive c-section queues all round London that night). At 6am the surgeon came in and said because of the kidney problems he wanted more senior staff to operate on me and also to have the whole neo-natal team there. At 10am the most senior surgeon came in and said that he wasn’t taking any chances and wanted my baby off straight to Great Ormond Street Hospital(GOSH) and I would be apart from her for three days (in recovery) so he wanted to transfer me back to UCH so I could be near her. The trip would be too far to make from Homerton on a daily basis after such a big operation. By this time we were exhausted and I wanted to get the baby out.

At 1pm I was taken down to surgery. Jasmine was born at 1.23pm Monday afternoon. It took him about six minutes to get her out. The operation was absolutely lovely (if there is such a thing), everyone was there and chatting and happy and rejoicing in our baby. They rushed Jasmine out and straight into intensive care so I got a quick look at her as she came out and as I was wheeled out. Then they put me in the recovery room and threw Neil out. I shivered uncontrollably for half an hour and then was transferred to a ward with all the other mothers and babies.

Shortly after I started leaking so they put me on a breast pump.