Jasmine Stalker-Firth

Jasmine has had a rotten cold. One that was proving very difficult to shift. She has had it for about two weeks now and it was probably the reason why she needed her NG tube.

I thought she was getting better, but on Friday she was really tired and wimpering for most of the day which is unusual for her. In the morning her temperature, blood pressure and weight were fine. But something wasn’t right. At first I thought it was a combination of the cold and teething so, for the first time, I gave her some paracetamol to take away some of the symptoms and make her snooze a little.

It didn’t work. She continued whimpering away and by mid-afternoon was vomiting and pooing more than usual too. Around 5pm, when I changed her out of yet more sicky clothes, her legs were all deep purple and mottled. Neil took her temperature – it was 38.6 – and then her breathing became laboured and her eyes were rolling back in her head. We rang the hospital, and took Jasmine’s blood pressure whilst we were talking to them, and then we ran straight down there, getting lots of water down her, as we were told. Squashing on the tube in rush hour with a buggy isn’t easy but it is amazing what you can do when you must.

We got there and almost on arrival Jasmine looked a lot better. The nurses said that this often happens. The mottled purple on her legs (a fever rash) had faded and her breathing was a lot better. They ran some tests: bloods and PD specimen. And everything came back fine. But the doctor wasn’t taking any chances and kept Jasmine in overnight. She was kept off dialysis for the night too to give her a chance to gain some fluid, as she was looking decidedly dehydrated at this point.

So they think that the combination of a bad cold, teething, losing a lot of fluid through vomiting and pooing, and coming off her dialysis a bit dehydrated that morning, had led to Jasmine spiking a fever.

I was very sad at leaving my baby on the ward even though the nurses are brilliant and would watch her all night. Neil and I kissed her goodnight and went out for something to eat but we were so tired after all the panic that we got home as soon as we could for a hot bath and bed. That night in bed, without the machine pumping and buzzing, it was difficult to get to sleep, and we lay in bed chatting about how comforting we find the noise of the dialysis machine.

I woke early and lay waiting in bed until I gave up and rang the ward at 6am to ask how Jasmine was. The nurse who answered said that she was fine and told me to listen as she held out the phone. My baby girl was singing quite loudly across the ward and had been doing so for a good hour.

We got down there at 9am and Jasmine was sitting in her buggy by the nurses’ station and when she saw us she burst into tears. We picked her up and made a big fuss of her, until the doctor came in and said that Jasmine was fine and we could all go home.

When we got back, Jasmine had a parcel from her Grandma and Grandad Stalker with two really cute outfits in. Neil insisted that I took a picture this morning, as she looks like a bobby dazzler in her new suit and like a totally different baby to the one we had to rush off to hospital on Friday.

We are still really tired, and are taking it in turns to snooze round the flat. Neil was asleep on the chaise longue until I took this picture and Jasmine was snoozing in her cot, but now she has woken up and is burbling away to herself. All day yesterday, because she was so thirsty we fed her using the cup, but we are leaving the NG in for now, until she has properly recovered. But she was funny this morning as she cried out loud everytime Neil tried to connect her to the food pump so in the end we just fed her from the cup. She still won’t eat any solids though.

Today, we are staying indoors as it has been freezing. It was snowing last night and it had laid this morning. Now it is pouring down and is really dark outside. But who cares about outside, today we are thrilled and are giving thanks to be back at home with our gorgeous girl. There is nowhere else we would rather be.

Today, I got a letter from the hospital telling me that my glucose tolerance test results were normal so I don’t have pregnancy diabetes. I was so relieved, Jasmine and I went out for lunch to celebrate.

We toddled off down to Cafe Nero and were sitting there minding our own businesses: Jasmine was singing, I was munching on a panini, when a woman came over and said:

“Oh what a beautiful baby!”
And then, “Oh my God what is wrong with her?”
I said, “That is a feeding tube.”
And she said, “Oh do look after her, won’t you?” And she touched my arm.
So, I said in my jolliest school matron voice, “Of course I will.”
And she said, “Don’t be like those parents.”
I said, “What parents?” I had no idea what she was talking about.
She said, “Of that baby.”
I said, “What baby?” Still no idea.
She said, “Baby P.”

In her tiny mind: NG tube = child abuse. I remain speechless.

Our cleaner is going off to train as a beautician, so I cleaned the bathroom yesterday afternoon. It is the first time for months I have done any housework and I had forgotten how therapeutic I find it. Jasmine found the whole thing very entertaining and watched me from the hallway as I mopped and scrubbed. When Neil came back he said that it wasn’t as clean as when our cleaner does it, so I beat him with my feather duster.

We had just sat down for a rest when Jasmine’s Great Auntie Linda came round. She brought us some lovely chocolates and hand cream to keep our skin soft, and she brought Jasmine a really cute pair of leather booties. They are a little bit big but we think they are great. Jasmine is wearing them already and as they are elasticated, they don’t fall off her feet.

Last night, Neil was changing Jasmine’s nappy about 11pm and she was in the middle of a fill. (A fill is when Jasmine gets fresh fluid pumped into her peritoneum ready for a dwell. A dwell is when the fluid sits in there cleaning the blood using the wall of the peritoneum. And a drain follows a dwell and the fluid comes out of her peritoneum, ready for her to fill up with fresh fluid.) He was just tidying up when he thought he spotted a black bit floating up her patient line. When she is filling, it happens really quickly and we have dim lights in our bedroom when she is asleep, so I have often thought I have seen things in her line when I haven’t. But Neil was a bit freaked out by it. We had a chat, and I said that I thought it was a bubble which sometimes look dark against the wood of the cot, and Neil said perhaps. And we discussed it for a bit longer, reasoning as to why it should only be a bubble and nothing sinister, and then eventually we said that we would wait and see in the morning. So, even though I thought we had reasoned calmly, I still lay there worrying about it, until I fell asleep. This morning I checked her drain bag in a forensic manner and was happy to report that there was nothing in there. It probably was a bubble.

I had to stop typing there as Jasmine just threw up her NG during the middle of a feed. You can’t put the NG back down on a full stomach otherwise she will just vomit, so she will be a bit short on this feed. Still, we are giving her lots more milk in our endeavours to get her to put weight on, so she is already ahead of her feed schedule today. And now the tube is out, she is rolling around the floor very impressed with herself.

I have tried to make this blog shorter since my mum (‘our mam’) left me a message on here yesterday, and I was so pleased and touched (as she went round my brother’s house to read the blog) that I rang her up to tell her and she said, “You don’t half go on typing for ages,” which made me laugh. I explained that it is much quicker for me to type a long blog than a short one. But she wasn’t buying it.

We have finally got back on schedule and got up this morning at 8am. Neil fed Jasmine at 9am – well plugged her into the food pump – after doing her obs (blood pressure, temperature, weight) and I gave her a wash. This was so much better than feeling tired and getting up at 11am and missing feeds and trying to catch up and having a headache from too much sleep and then not getting to sleep at night.

We didn’t put Jasmine on an overnight feed last night as she wouldn’t go to sleep so I had to feed her to get her to fall asleep by which point she had had all of yesterday’s quota and some of today’s. And today it seems that she has put on a tiny bit of weight which is brilliant!

Neil put Jasmine on her front after this morning’s feed as she looked a bit vomity and she fell asleep and looked like she did in the photo. I used to worry about her sleeping like this but that is how her dad sleeps all night every night so I have calmed down a bit. And two minutes after I took this picture she turned her head to one side and vomited all over the carpet. She is now smiling and looking much happier and rolling about.

Jasmine has refused to eat any solids for about three weeks and I was getting a bit down about it. The only thing she will suck on occasionally is a marmite flavoured rice cake. At the hospital they said not to worry as she knows how to eat and how to drink and she won’t forget these things, even if she doesn’t want to eat or drink at the moment.

On Wednesday whilst waiting for my scan, a family came in with two toddlers who were each given a mini-packet of Cadbury’s animal biscuits and were munching away and staring at Jasmine and saying, “Baby, baby, baby,” as toddlers do. And Jasmine was fixated on their little bags and I felt bad that I didn’t have anything to give her.

So, yesterday we got Jasmine her own little mini-packet and she loved it and waved it about. And then I opened the packet and gave her a little mini-chocolate biscuit and she loved it. She sucked all the chocolate off and gnawed a bit of the biscuit and then threw it on the floor. So I am thrilled that she is starting to show an interest once more in a bit of food. Shame that it wasn’t the veg or bread I offered her at lunchtime but now that I know it isn’t all food all of the time I feel invigorated.

It is interesting as up until a couple of weeks ago she wouldn’t eat sweet things at all and turned her nose up at fruit, but now it seems I can try once more with slices of apples and bananas and satsumas. Fantastic!

It is funny that you can buy so many toys to ‘stimulate’ your baby these days as Jasmine spent most of yesterday afternoon playing with Neil’s laptop bag. She zipped and unzipped it and pulled the velcro fastenings backwards and forward. Until she finally settled upon chewing one of the straps.

Yesterday was a funny day. On our return from the hospital we went to sleep around 6am until 8am when Jasmine woke up wanting to be fed. After some usual vomiting and singing and tidying around she went back to sleep around 9.30am and so did I (Neil had made a dash for the camp bed and silence of the other room at 8am). And we all slept until noon.

After that the whole day passed in a blur of tea and toast and pyjamas. Neil connected Jasmine at 5pm and I went to bed as I was still really tired and in my pyjamas and slept until my mum rang around 6pm and we had a big chat. Then I got up and wandered about for more tea and toast as I was too tired and feeling too sick to eat anything else. Jasmine was very good and caught up on her sleep and snoozed from 5pm until we went to bed around 11pm and then she slept all night.

We were all awake at 7am and had lovely breakfast in bed and now I am on my second breakfast of tea and toast (my first was fruit and nuts – aren’t I healthy?). Jasmine is lying next to me intermittently snoozing and singing and coughing up phlegm. My new discovery is that a handful of almonds when I feeling a bit ropey, helps to take away the morning sickness feeling.

Jasmine has a really bad cold again and has been coughing which makes her vomit and has a snotty nose. She gave up feeding on Monday evening which was a bit of a shame, as we had had a lovely day. We went out for lunch and to an afternoon matinee at the cinema to see Ghost Town, which was really funny and made us laugh. Jasmine loved the cinema and kept shouting out to join in with the people on the screen. Everytime we walked her to the doorway she would immediately be quiet as if she didn’t want to miss any of the film.

In the evening, it was a struggle to get her feed down her and then at bedtime she refused her milk altogether. I put the NG tube back down on Tuesday morning. She cried for two hours and pulled it out and then I put it down again and she sicked it up and then I put it down again and she screamed. It was a tiring day. I guess after having drunk all her milk every day for seven weeks, Jasmine had forgotten what the NG felt like and was really upset. Tuesday and Wednesday, every time I went near her to hook her up to the food pump, she would scream when I touched the NG.

Wednesday was a tricky day as I had to go to the hospital to have a glucose test as they suspect that I might have pregnancy diabetes. I didn’t eat anything after 10pm and could only drink water. The test started at 9.15am, they took my blood and gave me two cups of Lucozade to drink. The nurse had difficulty getting my blood out and told me she would do it differently the next time. Unfortunately, she had a worse job that time and was trying to suck it out with a syringe until my arm went numb and the blood trickled down to my hand and I threw up everywhere. I was a bit worried that the test would no longer work since the Lucozade was all over the floor, but she said that it was ok and bravely pressed on using my other arm and got another nurse to mop up the sick. Poor things! And then I waited another hour to have the final blood test with my arms all bandaged up.

Neil came down to drop Jasmine off and then Jasmine and I went to lunch and waited about for my 12-week scan in the fetal renal unit. I had to sit with a rather full bladder and feel extremely uncomfortable for ages as unfortunately everything was running behind by about an hour. Poor Jasmine was throwing up in the waiting room every two minutes much to the horror of the new mothers-to-be and then when I went in for the scan she kept vomiting there and everyone was really brilliant entertaining her and mopping her down. It was the same group of people from my last pregnancy and they work closely with GOSH so they knew all about Jasmine and were just lovely. And the doctor who had sent me out in the night to Homerton when I was in labour was really sorry and kept apologising, which was very sweet as it wasn’t her fault there was no room at the inn.

So, it seems that I am further along than first thought. Today, I am 12 weeks and 5 days. The baby was whizzing about so quickly that it took ages to get all the measurements they needed and they had me jumping up and down on the table to get the baby to move to a better position. But Jasmine was very good and sat patiently for ages. Afterwards, they wanted to do another blood test which took a while as my veins were in ribbons and we had to hunt about for another vein. This test went off better as I was well-hydrated and well-fed.

We finally got home around 6pm after Jasmine and I had put in a full day at the hospital. Jasmine came home in a pair of socks, a baby body, a jumper and a fur coat, as we had run out of all the trousers, tops, tights and dresses I had taken with me. I am glad she had her blanket on in the buggy otherwise people would have been wondering why I dress my baby like a nutter.

I met a retired nurse from GOSH on the tube who was attracted by Jasmine’s NG tube and wanted a full medical history. Ah yes, we are back in the NG world of nosy people and people who want to share with you all their terrible stories and troubles, and want you to tell them yours and don’t seem to care that you might find it painful to talk to them at all and that you are sitting there wishing that they would bugger off and mind their own businesses.

Anyway once home I was looking forward to an early night but what with one thing and another and a midnight trip to GOSH, it was 6am before I got my early night.

Neil keeps thanking me for spotting the split, as we have had to ring the community nurses three times this morning to get some syringes, and each time it reminds him about when they had to come in every two days for a fortnight after Jasmine’s last line break. He is so grateful we have avoided all that – not least of all because antibiotics and nystatin for 14 days don’t help with Jasmine’s weight gain – and I feel very popular today.

My Godfathers, I plugged Jasmine into her foodpump at 9am and at 10.45am I wondered why it hadn’t finished and Neil came in and said that I still was feeding her on the overnight schedule. We put her on an overnight feed last night for the first time in months to catch up and let us all sleep, as she had vomited so much. So poor thing this morning had only had a few mls. I have upped the pace and she has gone off to sleep – finally getting some food in. Seven weeks off the food pump and I have totally forgotten how to use it too.

Right, I think it is time I got out of these pyjamas, as lovely as they are, and got on with the day. I might have to wear a long sleeved top as my arms are covered in bruises and I don’t want to frighten anyone.

Oh no Jasmine has started vomiting. Aaargh!

Evening

I know this is the longest blog in the world already, but when Jasmine and I went to the shops, I met a very nice lady who asked what was wrong with Jasmine so I just said that she needs an NG to feed better. And then she told me a rather sad story.

And it got me thinking. The other night, Neil and I had a discussion about what sort of help we would like to have, and if we feel we need help then what sort of help should we be giving others. And perhaps this is one way I can help others. I may not want to talk about my problems but the people I meet want to talk about theirs, and if they choose to do it with me, then the least I can do is listen to them so that they feel better. It doesn’t matter how sad their stories are, if they need to share them with me, then I must let them.

Right, time to do Jasmine’s dressing.

It is 5am. Jasmine, Neil, and I have just come back from a stroll under the stars on a crisp winter’s night. And it is the first time Jasmine hasn’t been connected to her machine on a night since she was 17 days old.

Neil and I had been up chatting late this evening, even though we knew shouldn’t have as we are always exhausted the next day. After midnight we started getting ready for bed and I changed Jasmine’s dirty nappy. When I looked at her catheter it looked slightly different. Normally there is a thin blue stripe which runs down the whole of Jasmine’s line which comes out of her tummy and is connected to the catheter which we open and close everyday. Tonight, or this morning rather, the thin blue stripe on her line had a white gap in it.

We took a picture of it and blew it up on the computer to see it better and then we shone a torch on the white gap. It was a split! We rang the ward, disconnected Jasmine from her machine, and ordered a taxi.

We got there around 1.30am and the nurses inspected the split and decided that we should wait a while longer to make sure that we got a good sample from Jasmine’s peritoneum.

At 3am they snipped the line where it was split, soaked it in bettadine (antiseptic), attached a brand new catheter and took a sample of her peritoneal fluid and sent it off to the lab. We studied the left over piece of line and the nurses said that it would have definitely split by morning and it was great that we spotted it.

At 4am, the lab results came back – Jasmine’s white cell count was six and we were cleared to go home. Fantastic. Our lovely nurses packed us up with forty-eight hours of dialysis fluid full of antibiotics and heparin and now we are back home drinking tea. Neil is sorting out the washing and I am blogging – the things we do to relax.

We are a bit tired and teary but very proud of my obsessive-compulsive dialysis. Jasmine is snoozing in her cot and we have the rest of the night off dialysis. We are officially on dialysis holiday until 4pm tomorrow and thrilled to be in our own bed tonight.

We made a Christmas cake yesterday, which is something we do every year and is a part of our getting ready for Christmas ritual. Jasmine thought the whole thing was very interesting and kept sticking her hands into things. Neil was worried at one point as he was stirring the cake mix and Jasmine, who was sitting too close for comfort, was wretching a little bit. Luckily, nothing untoward happened and for the whole afternoon our flat smelt delightful as the cake baked in the oven.

This week we will be buying Christmas Cards from Kids Kidney Research who have some lovely cards for sale. Kids Kidney Research raise money to fund kidney research for babies and children in the UK.

Most people don’t realise that a good working kidney transplant will only work, if you are lucky, for 10-15 years, after which time it slowly starts to fail. If you are fortunate, you go are back on dialysis and the transplant waiting list. Research which explores new therapies to heal damaged kidneys or correct the faulty genes that cause kidney disease gives us all hope for a better future. So buy some cards or better still become a kidney donor!

This morning Jasmine and I watched the National Service of Rememberance at the Cenotaph in Whitehall on the Beeb. I was a bit weepy thinking of all the young people who have lost their lives over the past 80 years and gave thanks that the people I know who went off to war, came back.

We bought Jasmine a lovely fur coat, fake of course as she is one ethically-minded baby, to keep her warm in winter. She looks very fetching and so I couldn’t resist putting a picture up her.

We’ve been out to the shops this morning so that she could model her new coat and now she is flaked out having her afternoon nap.

Once it gets dark this evening we are going to take Jasmine to the top of our building to show her some fireworks and have fun on her first bonfire night.

We went to clinic yesterday morning and they seemed pleased with Jasmine’s progress, which was great as I had been stressing about the fact that Jasmine has lost weight this week. However, she has grown about two centimetres in a month, so that is a good amount. She is back on the 2nd centile, as she was slipping off the chart and it was a bit of a worry. There was another baby getting his bloods done just before Jasmine and he was huge in comparison to my little baby girl! Still, she is growing which is the main thing.

They increased Jasmine’s feed in a big way which is great and we have swapped from SMA to Cow & Gate, because SMA in the concentrated doses we now need provides too much Vitamin A. So, with this new formula hopefully Jasmine can start ‘putting the beef on’ as my mother would say.

We got home late afternoon and then got a phone call from GOSH, Jasmine’s potassium levels were way too high and it was a bit of a worry. So, they invited to us to go to GOSH on Wednesday morning to repeat the blood test because it seemed so strange that her potassium was so high and her calcium low and generally, the results didn’t tally.

We then had a bit of a bad night as Jasmine’s alarms went off hourly through the night until 4am and then we had a break until 6am when it went off again and then at 7am someone rang us up – wrong number. This morning Jasmine and I were taking turns to vomit, until I felt loads better and used the brief window of opportunity to rush about and get the machine ready for tonight and do all the other things around the house until the sickness set back in.

GOSH rang this afternoon as they had managed to use the extra blood they had taken from Jasmine, as her blood was coming out really well yesterday – as sometimes it is a bit of struggle to get everything they need from her tiny veins – to repeat some of the tests and her potassium came back fine and her calcium was just a tad on the low side which means she is putting it in her bones. I was so relieved. So, we don’t have to go back to GOSH tomorrow. Her other blood results – urea, creatinine, iron, etc., – are looking ok. And with her extra dose of epotein she is quite energetic, which is lovely to watch everyday.

Today she was on her new super high powered Cow & Gate with loads of maxijul and vitapro and she managed beautifully. She is still on the doidy cup as she hasn’t needed the NG tube yet and she managed all of her extra feeds and more – since she was doing a bit of vomiting – and I must replace what she loses. Hopefully, she will get used to the new super feed and her vomiting will calm down as she did about a third more vomiting today than she usually does.

Jasmine spent some of the morning lying on the floor arching her back and some of it trashing her baby gym and then the rest of it sitting next to me on the settee whilst we watched the American Elections getting underway. It was difficult to completely hear as Jasmine was singing very loudly for at least an hour and staring at me whilst she was singing, which was very funny. Later on we went for a walk and Jasmine was singing in her buggy and waved back at one of the guys who works in our building. She is just fabulous and her little gummy smile makes me cry with joy.

Jasmine has been making loads of noise over the past 24 hours. We think it is because she is teething. Her weight, temperature, blood pressure and peritoneal fluid are fine (I know I have checked them twice in the last 24 hours, as usual). So, in between giving her things to chew and rubbing her gums with bonjela there isn’t a lot else we can do. Everytime she puts something in her mouth she pushes it up into her top gum so we are waiting to see if a tooth will appear.

Jasmine started wailing about 6am this morning, so once I disconnected her, Neil got his Tuareg sling out and has been carrying Jasmine about in it. This is very nice as we can see how much she has grown since the last time he used it.