Jasmine Stalker-Firth

Jasmine and I went to the V&A yesterday. It was lovely. We met Neil, who has been at a conference all week, and we had lunch en famille. Jasmine had a spinach, parsnip and basil puree followed by milk. I had an avocado, aubergine and pesto sandwich and Neil had a salmon galette. Then we had cream scones and cups of tea.

After Neil went back to his conference Jasmine and I were wandering about the plaster casts and the religious imagery minding our own businesses, Jasmine was in my arms enjoying aeroplane rides and cuddles, when a lady stopped us and this was our conversation:

Lady: “What a gorgeous baby, what great big eyes like saucers, so lovely.”
Me: “Thank you.”
Lady: “What is she called?”
Me: “Jasmine.”
Lady: “Lovely. Oh dear what is that on her face?”
Me: “Err, ah, mmm.”
Lady: “What is wrong with her?”
Me taking a deep breath: “Err, I just don’t want to talk about it, if you don’t mind.”
Lady: “Of course you don’t, I am sorry for asking.”
Me amazed: “Thank you.”

And went back to gorgeous-babyness talk. And she waved at Jasmine who sort of waved back. And I was relieved.

Looking on this blog, I have discovered I have a total Friday meltdown about once every two months. So that isn’t too bad. This time I tried to fix things as I was going along to avoid meltdowns in the future, so it only lasted a couple of hours. Last time it lasted 48 hours. Progress all round. I did feel a bit embarrassed today when I got out of bed and thought of me moaning on down the phone to Baxter. Our paper towels were short (they usually are, but we don’t ever say anything), but Friday I phoned them back again and left a message and now I wish I hadn’t.

Jasmine has been receiving lovely things through the post: A very cute red New York body/onesie (thank you, Dara), a lovely blue bolero style cardigan (thank you, Nicola), a flashing musical fly and curling snake (thank you, Lucy), and a funky trouser suit (thank you, Sally). Jasmine loves all of them and chews in appreciation. She is very good at chewing.

The other day Neil was changing Jasmine’s nappy when she started tugging on his hair. She tugged for ages, and Neil said that it was very good and like an Indian head massage. She is so talented our girl!

Her other talents include: lying with her head in one place and moving her body round and round like the hand on a clock, clockwise; leaning forward in her buggy; making a noise that sounds just like yes, and if you sing to her she tries to copy you and burbles back in the same key.

Jasmine’s feeding abilities are starting to come back. She had half of each of her feeds yesterday and I put the rest down her tube. She was only sick at 6am, 9am and 6pm yesterday and didn’t even posit the rest of the time. So that is encouraging. She enjoys her food and boiled water but of course doesn’t eat enough of that to get fat. She is nearing the 5kgs mark so we are seeing progress, it is slow, but it is there. We just have to be patient whilst on operation grow the baby.

I got out of bed this morning, dreading today, as it is delivery day and I hate all the chasing everyone that I have to do.

I was just changing Jasmine’s nappy when only half of my delivery from Fresenius turned up. They are supposed to drop off 30 giving sets and four Baxa syringes every month, and every month they don’t do this, because it is beyond their capabilities.

I rang them up to tell that they were completely rubbish and I wanted to lodge a formal complaint and blah blah blah, because once I am in complaint mode there is no stopping me. After a couple of minutes I managed to ascertain that basically you complain and then the person on the phone prints out a letter of apology and pops it into the post. Pointless! So I said that I didn’t want a letter, I never wanted to speak to them again. And the lady said that she was sorry and was there anything else that she could do for me. Then I had a brainwave and asked if they would send me 16 syringes and the very nice lady on the phone agreed. So that is great I don’t have speak to them again until October, so I got my wish.

After that I put Jasmine in the buggy and we went for a walk about outside to get some fresh air as the Baxter dialysis is due between the hours of 12 noon and 4pm so if I didn’t get out then, I wouldn’t get any fresh air. I am sitting here now actively waiting, although I know I am supposed to do other stuff.

Once we got back from our walk I spent an hour on the phone with the nurse and the dietician in order to get to the bottom of Jasmine refusing all of her feeds and what to do about the raised urea levels. This one decided that Jasmine needs her protein and the urea levels are fine and we won’t be needing the very little blue scoops after all. We are to press on with our feed as we are even if she doesn’t want it and we shall change the dialysis program.

It has been a bit depressing as I have had to tube feed Jasmine for 3 days now as she won’t take any feed at all. She will however, drink water and eat mashed up vegetables. I ran the idea past the dietician that she is obviously sick of this super-thick milk but the dietician said we just have to force it down.

The dietician said that perhaps that virus Jasmine had last weekend is still present and she may improve and suggested putting Gaviscon in her feed, but I wasn’t too sure about this so she rang the doctor and then rang me back and said that the doctor had said that it wasn’t a great idea and we should increase her domperidone instead. So I can live with that.

After all that I got off the phone I gave Jasmine some squash and sweet potato which she loved and ate and smiled about and then she took 50mls of her feed orally, which was great and made me jump for joy. So perhaps it was the lingering virus.

After that I rang the community nurses to say that my NG tubes haven’t turned up (I requested them on Monday), so one nurse came round and dropped some off, so that is nice. We now have a nice stash and won’t have to phone them anymore.

So now just this delivery and we are all done for a while. I hate waiting in for things, especially over 4 hours. I used to think Baxter were good, but making you stay in all day when you have to stay in every night anyway is just cruel. Actually, I just typed that and thought that it was very cruel so I rang up Baxter to see why they couldn’t just deliver it on a morning like they used to and they said they would deliver it – if you paid them loads more money! And I was moaning on as I am in super-moan mode today, and the man who was trying to deliver my stuff was outside but couldn’t let me know as I was on the phone – our phone is linked to the intercom. So if I had just stopped moaning my deliveries would have arrived sooner. Such is life! I just need more patience. The poor man outside told me he had been up since 5am delivering things. I felt quite bad.

I asked if our deliveries could come monthly and they will starting from next month, so that will be great. Then on the way back up the stairs I bumped into the flats manager and asked about our aerial reception which has been dodgy for the past year and he said that he was looking into it. I asked if he could to get it organised by August and the kick off of the new season as we want to get Setanta and we have to stay in every night as our baby has no kidneys (I thrust Jasmine towards him – she was in my arms, as of course she comes everywhere with me even if I don’t mention it). He said that he is on the case.

Fantastic! I feel like I have achieved a great deal and it is only 3.55pm. Time to stuff more feed down Jasmine.

It is Thursday already and all I can say that I have done all week is feed Jasmine. I really don’t remember doing anything else, except push the NG tube back down her nose everytime she coughs or sicks it up, and then put all her clothes and mine in the wash. I am so used now to feeling tired and fiddling with the NG tube and doing the washing that it is hardly worth mentioning.

I could do with a bit of a kip now but so far Jasmine is refusing to go to sleep and is a bit cross, so I am pushing her back and forward in the buggy with my foot whilst typing this. She is listening to Franz Liszt’s Hungarian Fantasies and it seems to be doing the trick. She is starting to sing along. She has been doing her singing since around 6am this morning after Neil fed her, which was great and was quite cute for the first two hours, and is definitely better than the screaming and crying she was doing just now.

Clinic was good on Monday. Jasmine’s blood pressure is down and her constipation under control, so we can concentrate on getting some weight on her. We are on operation ‘grow the Jasmine’.

At clinic, the nurse swabbed (and cleaned) Jasmine’s PD exit site and her nose to check for staphylococcus aureus which is a bacteria that lives on the skin and up the nose and could infect her PD exit site if it got transmitted there.

I keep my nose clean with a neti pot. I love my neti pot. I don’t know if it does anything for bacteria – I would like to think it did – but it definitely stops congestion and reduces colds. Neil bought me it for Christmas when I was pregnant and I use it everyday, Neil uses it sometimes as he likes to copy off me (when I said that I was going to type that last night he said to say that he has a mind of his own – little does he know that it is only when I let him).

Anyway, at clinic after the swabbing and site cleaning, it was time for Jasmine to produce a urine sample. We had noticed that since she has been on a stronger dialysate mix, her urine output has decreased, but still expected it to be enough for a sample. So we hung about GOSH for a couple of hours and had lunch (panini and latte, of course) in the hope that she would fill a little bag. But alas, it wasn’t to be. There wasn’t enough for a sample and eventually we toddled off home. It is funny, we had gotten down to GOSH that morning at 9.30am and we still never managed to leave the place until gone 2pm.

I was a bit alarmed about the urine but apparently it is common in children on dialysis for their urine production to decrease. The dialysis is doing what the kidney does so the kidney is no longer needed and stops working. When it was producing urine it was just throwing away all of the good stuff that the body needed and was only useful from a fluid management point of view. When I asked the clinical nurse specialist yesterday whether it better to have it producing urine or not, she said that it is better to have urine even if it is throwing away stuff, but since we can’t choose we will manage. She said it with such confidence that it really cheered me up.

I was on the phone to her because Jasmine seemed to be dehydrated. When I took her off dialysis yesterday morning, her blood pressure was 66. And last night going on it was 80. The dietician has changed her feed again adding two extra scoops of maxijul and Jasmine hates it. So, I have been tube feeding her more than usual and she has been vomiting more than usual. That could be because she is too dry (dehydrated) or because of her feed.

Last night we went back to weak dialysate bags for the first time in over two weeks and she still took a load of fluid off. So we will see how that goes and then in a couple of days time we will reduce the protein (vitapro) in her feed as her urea is too high and that could be making her feel sick.

The dietician is sending me some small blue scoops in the post, as that is how they like to communicate (big blue scoop, small blue scoop, yellow scoop). I measured these scoops out of curiosity and as I guessed, they equate to tablespoons -15mls, and I guess the small one will be a teaspoons -5mls or half a tablespoon or something. Actually though, the big blue one has 50mls written on it. So it might have been easier to say reduce vitapro to half a tablespoon (7.5mls) or something, but no I have to wait for the small blue scoops to arrive. I would much rather that they speak in terms of mls and grams and calories per kilo instead of blue and yellow and big and little. Good job I do not have the type of colour blindness that cannot distinguish between blue and yellow.

The dietician seemed unimpressed that we have stopped Jasmine’s overnight feed and have taken to feeding her more sensibly. She kept saying things like: ‘Why don’t you start the overnight feed at 10pm and then one of you stay up until midnight and then switch it off? The other one could go to bed.” I didn’t reply: “Because we live in a one-bedroom flat.” She didn’t stop there though and spent ages giving me ‘advice’ as if I was some sort of idiot who hasn’t tried all the combinations over the last 10 weeks. I get really angry every time I think about that conversation.

Dieticians should spend a couple of days and nights looking after vomiting babies either on the ward or better still in a patient’s home so that they can see just what vomiting all night and I know it is hard to see the little one vomit but you just have to get it down them look likes. All of the dieticians seem like very nice people who obviously want to help, which is demonstrated by their choice of vocation. But on Monday I was left feeling that they are so far removed from the ramifications of their advice and the practicalities of NGs and feeding and vomiting and beeping food pumps, that their advice is not particularly useful nor necessarily pertinent.

I also interpreted the dietician’s comments to mean that I had some sort of NG tube aversion, which would lead me to not feeding Jasmine or using the tube. It is in the literature that the NG is a catch-22. You put it down to improve feeding, but then it puts babies off feeding as they have great lump of plastic stuck in their throat and she even said herself that you only have a ‘small window of opportunity’ to encourage babies to feed well. I was just trying to ascertain the best way of optimising the time Jasmine feeds well so that she won’t forget and have a poor appetite in later life. I will just have to find better ways of phrasing my questions so I don’t sound like a mad anti-NG mother.

And I should actually be giving thanks that I can spend so much time thinking about feeding etc., this week instead of worrying about white cell counts, constipation and high PTH readings. I am grateful for that.

One good thing I thought of the other day and ran it by the team was the way we add calcium acetate to Jasmine’s feed. We grind up two tablets and mix them with water. Then we draw then up into 1ml and 2ml syringes to add to each feed. Already, as we are drawing them up we can see in the mix that the calcium is not evenly distributed amongst the syringes and often left in the bottom of the pot. Then by the time we come to use the syringes, the calcium has dried and caked around the top making it impossible to get the calcium into the feed. So, I decided that when we are mixing up her overnight feed and adding the SMA/maxijul/vitapro powders to water, to add in the ground up calcium acetate tablets, then blend them altogether.

I am a genius. It works an absolute treat, and saves us drawing up six syringes a day and carrying the syringes about ready to add to the milk. Neil was very impressed with me as he is on meds duty at the moment. That is a saving of 180 syringes a month and quite a bit of time.

Oh yes, could penta please make some recycleable syringes and do their bit for the environment and the NHS? All these single-use only syringes might be making you lots of money but it is not on!

Right Jasmine is now snoozing. I am going to close my eyes too and breathe deeply and remember that everyone is trying to help and all advice is meant well and I don’t know it all – I just think I do (I can see my parents nodding their heads in agreement).

Boo hiss!! We had to put it down this evening as Jasmine was so far behind feeding and refusing to take anymore. So at some point we had to be sensible and do what would ensure she gets her target feed for the day. It is disappointing and now she is lying in bed crying and trying to cough the tube up but she will soon get used to it again.

We have learnt a lot this week. I guess the main lesson is, she can’t manage without it for too long and when she is not feeding well, the tube does help. However, she has vomited twice since we put it down so the tube isn’t a general pancea. Never mind, eh!

Jasmine hasn’t been feeding as well over the past couple of days. We suspect some sort of tummy upset as she has been producing truly smelly nappies which are nothing like her ordinary ones and she cries when you try and feed her milk. She has also been struggling to drink her milk. She hasn’t been vomiting (well my idea of no vomiting is four times a day) which makes a change, she just hasn’t wanted to drink.

We are out of our routine today as we were late putting her on her dialysis and late bringing her off and feeding her. So we are behind with her milk as she feels too full when on dialysis and doesn’t want to drink and then when she came off dialysis she didn’t want any milk and then I was getting a bit stressed about her not wanting to drink and us not meeting the massive milk quota we need to get through. So I had a break from stressing and gave her some carrots and potatoes and she loved them.

According to the book I was given by the health visitor, babies only eat a couple of spoonfuls at first. Not Jasmine, she smacked her chops and ate about 10 little spoonfuls, and was singing and laughing. And then she went on and drank over half of her feed, that she hadn’t wanted earlier. I am guessing that she is fed up of the taste of milk and is ready for other stuff, as there is a whole world of interesting foods out there. The only problem is that giving her food means she won’t get as many nutrients as if we stuck to just milk. However, she can’t just have milk forever.

I spoke to my mother earlier who said that I should try giving Jasmine a bit of boiled water as she probably has wind. So Jasmine is watching ‘Songs of Praise’ at the moment and enjoying herself whilst the boiled water cools.

We started doing baby yoga with her yesterday. She liked the half spinal twists and the aeroplane rides. They said on the DVD that yoga helps form a bond with the baby, especially if you maintain eye contact. Not Jasmine, she wanted to watch the DVD herself and we were just getting in her way. Are we proper parents now or what? We get on our daughter’s nerves. I am so proud.

Update

My mum is a genius. Jasmine had a few mouthfuls of boiled water and then went on to drink nearly all of her 3pm feed – She was a bit late at 5pm, but we can give her 6pm feed at 8pm and then we are all back on track and she will have had 80% of today millk feed and some baby yoga, carrots and potatoes and only vomited once so far today – absolutely unheard of! She won’t hit her milk target today, she will fall about 20% short. This is the only thing I am worried about. Is it better to feed her more knowing she will vomit more? I.e., put the NG tube back down. Or is it better to feed her less, risking not enough (orally and know that you can’t get it all down if she doesn’t want it) and not have her vomit? I guess only time can tell on this one.

I will go and pop her on her dialysis now, if I can drag her away from Robbie Coltrane’s tour round England.

It seems that people who keep Jasmine in their gardens do google about quite a bit. Last time in my webstats there was How to look after your Jasmine and today there was a ‘Things that will make Jasmine feel better’.

One thing that makes my Jasmine feel better is her weekly epo injection. So this morning, under the watchful eye of our community nurse, Neil injected Jasmine. Afterwards we bathed her, changed her sterile PD dressing, set up the machine, and then went out for lunch with the Grandparents Firth.

Jasmine likes it in Tas as the food is brightly coloured for her to stare at, there are lots of mirrors so that she can look at herself, and the staff are lovely and make a fuss of her. A couple of people eating in the restaurant came over to tell us how beautiful they found Jasmine. And her Grandparents gave her lots of cuddles – all things to make Jasmine feel better.

We are settling into the new routine and getting more sleep. Jasmine is crying less and was feeding well today even though her routine was disrupted. She is also starting to move about a bit. This evening we left her lying on the floor on a blanket with an open nappy underneath her and she moved off the nappy to the other side of the blanket.

The other day when Jasmine was wailing constantly, Neil put her in the recovery position. She really liked it and stopped crying and started singing to herself, my mad gorgeous baby.

We have been giving Jasmine an extra feed around 9pm each evening in order to reduce her overnight feed, so that she wouldn’t vomit in the night. As she has adapted, her overnight feed has been getting less and less, until the other night I didn’t see the point of putting one up. So, I just took her NG tube out too and even if we only get a week or so without it, it will give us time to get a good night’s sleep, and it will give her nose, face, and neck a rest.

I was so tired of listening to my girl puking all night and me getting up four or five times to mop her down, change the towel she was lying on, and pick her up to wind her. Every morning when the stupid food pump beeped to let me know it had finished, I was exhausted.

I was also, really fed up of putting sudocrem on her neck. She had a red angry rash in the gap between her chin and chest where vomit dribbles and stays, and is quite hard to successfully clean at 4am when you are cross-eyed, and sometimes it can lay there for hours if she has a quiet vomit and the sound of her wretching doesn’t wake me up. I was also really fed up of holding her whilst she wretches and brings up loads of mucus.

If living with a NG tube sounds bad, then I can tell you, living without it is worse. The first two days were stressful. I didn’t realise how much we relied on it. We aspirate it to wind her and we put her medicines down it, and if she is struggling to finish a feed we put her in the cot and put the rest of her milk down her tube and we don’t have to force feed her. It takes the pressure off feed times in a big way. So I was frightened about taking it out but if I didn’t do it, I would be forever curious.

The first day without it was difficult. She had loads of extra wind and was screaming for a good hour or so, and we didn’t know and couldn’t tell if she was hungry, had wind, or whether it was just the change in her routine. By the end of the day I was wondering whether it really was a good idea.

Yesterday, was the same and she was running a temperature too. We rang the hospital and were told to bring in a specimen of Jasmine’s peritoneal fluid. If Jasmine has a temperature and it doesn’t come down and if she is in pain, it can be a sign of peritonitis, which is a worry. If the catheter gets infected it would have to be removed. As it was the middle of the day we took a specimen straight from Jasmine’s peritonium. This is the drill:

1. Close all doors and windows.
3. Wash hands for one minute.
4. Sterilise area and get equipment ready.
5. Wash hands for one minute.
6. Open equipment without touching anything and then wrap Jasmine’s catheter in an alcowipe to protect it from the environment.
7. Wash hands for three minutes.
8. Take cap off catheter, attach specimen bag, unscrew catheter clamp, watch fluid drain until there is enough for a sample. Twist catheter clamp shut and clamp specimen bag.
9. Wash hands for one minute.
10. Open catheter and specimen bag caps equipment without touching anything and then wrap Jasmine’s catheter in an alcowipe to protect it from the environment.
11. Wash hands for three minutes.
12. Detach specimen bag, put cap on catheter, then put cap on specimen bag.
13. Leg it to the hospital.

It was 3pm by the time we dropped it off and went for lunch. Jasmine fed beautifully in the restaurant, without even a posit (thanks Leo for looking up the correct terminology) for the first time in about a week, even though we were ready. Everytime we feed her we have: a towel and babywipes to hand, and spare bibs, a change of clothes, flannels and a spare towel in her bag.

We sat there for a long time. When we got home the hospital rang to tell us that her fluid was ok and her white cell count was fine. We breathed a sigh of relief as otherwise we would have had to go back down to hospital for 48 hours continous dialysis and antibiotics. And then we got on with the rest of the day’s stuff. We wiped down the table and got ready to change Jasmine’s PD dressing – three minute handwashes, sterilising her exit site, etc., I will write the drill out another day. Then Neil did her obs (weight, blood pressure, and temperature – still high) and then he fed her whilst I set up her machine.

After I connected her, Neil drew up the medicines and I got her milk ready, then we had dinner and then it was 10pm. So, I went in to feed her. She was awake and ready for a feed, which she took, and some more, and wasn’t windy and only had a small vomit. And so by the end of the second NG-free 24 hours she had kept down 495mls of the 500mls of her feed. We were really pleased. Her feed is super-duper-concentrated SMA, I don’t think a bodybuilder drinks anything more potent, but she seems to like it.

Today so far, she has fed much better, her 6am feed went really well and I slept through it. Neil gave her it, and she made very little fuss. On top of this we have now had two good nights of quality sleep. We are working on the quantity. Her appetite has picked up, and she is feeding more quickly, and now cries for her 9am feed at 8am, and her 12noon at 11am, and so on, so hopefully we will get her on an even keel and be able to get more calories down her. She hasn’t put on any weight for three weeks now, so we need to fatten her up. Hopefully the NG-holiday will help, as a big piece of plastic at the back of your throat is not generally known as an appetite stimulant.

We are having a quiet day. Jasmine is currently in her buggy, licking her links and staring at the rain on the windows. The skin on her face where the tube was is healing nicely.

Yesterday morning, under the supervision of the community nurse, Neil gave Jasmine her weekly epo injection. Erythropoietin is a protein that is made in the body by the kidney. It causes the bone marrow to produce oxygen-carrying red blood cells. But as Jasmine’s kidneys don’t do this, she needs the synthetic epotein which does the same job in preventing anaemia.

Typing this now, I wish I had taken a picture of this milestone. He had his latex gloves on, Jasmine in his arms, all good to go. We were so focused on what we were doing, that we never thought about it. Next time when things are a bit more familiar, we will do a reconstruction of Neil injecting Jasmine. And after a few more injections under supervision, we will just do it ourselves and not have to wait in for the nurse anymore and can spend the time in the sunshine.

Neil said that it was fine. We have both practised so much injecting the little rubber ball and Jasmine has quite nice chubby thighs now, so it was nice to be doing the real thing. Jasmine was fine about it. She was crying before the injection because she gets upset about being restrained, rather like when we hold her head straight whilst I repass the NG tube. She doesn’t get upset at the actual action: NG tube or injection. Understandably, it is not being able to wave her legs or head about that is upsetting.

Neil’s only problem is that the latex gloves made it hard to inject the epo as they made him lose his sense of touch. We are going to ask GOSH about whether gloves are necessary. At the hospital (and in the community) nurses wear them to reduce the risk of cross infection between patients. So they use purple gloves for various activities like feeding and nappy changing. And then they use sterile latex gloves for injections and connecting patients onto dialysis. We don’t, we wash our hands for three minutes, as we only have one patient. Yesterday, Neil washed his for one minute and then put on the gloves.

Perhaps doing our usual thing will be better, for us, and we can do a little bit for the environment. With all the equipment we use and can’t recycle because of health/infection risks, we are not doing a great deal for the environment at the moment. The plus side (if there is one), we can’t go on holiday, we don’t own a car and we live in a very small flat, so perhaps we counteract all the bad stuff we do. Jasmine’s deliveries arrived yesterday and we seem to have an awful lot of boxes piled up in the corner of our bedroom. Neil has to climb over me to get into bed. Any excuse.

Jasmine’s singing is just fantastic. She was thrashing a bit in her cot at 4am, she does this when she is uncomfortable, so I picked her up to wind her, which she did herself instantly and fabulously, and then when I lay her back down, she started to sing again, 4am is early, even for her.

I am sure Jasmine recognises tunes. Everytime I sing Corinne Bailey Rae ‘Put your records on’ , she smiles as if she is thinking: “Ah yes I like this song.” She also likes Ray Charles, Pavarotti, and Barry White, especially when the last two duet together. There are so many songs to show her on YouTube. We had a viewing session together last Saturday and she was mesmorised. And then we watched Wimbledon. How cool was our Saturday?

Today we are going out to lunch and then watching the William’s sisters Final when we get back, as that should be a good bit of tennis, and a pleasant way to spend the day.

At GOSH they do a great range of really cute plasters. The other day when Jasmine had her bloods done the nurse put this cool plaster over her arm. It says ‘excellent’ on it and has a fish on it. Last time she had a mouse with ‘well done’. At each clinic now I run about asking all the kids what’s on their plasters.

So Jasmine’s blood pressure seems to be coming down. It is a slow process, but I guess that is the best way to do it, without stripping all the fluid and making her dehydrated. Tomorrow we will get our latest dialysis delivery and Jasmine will be getting new dialysate bags which have more calcium in them, as she is still not getting enough calcium and is taking what calcium she has from her bones. At the GOSH clinic they keep an eye on this by measuring her parathyroid hormone (PTH) levels in her blood.

If Jasmine’s PTH reading is too high, it means that she is taking calcium from her bones instead of using the calcium (serum) in her blood and other calcium ions. Normally, her kidneys, regulated by her PTH, would reabsorb calcium as they filter the blood and take vitamin D from her feed and convert it to an active form of vitamin D, which helps absorb calcium. But because her kidneys don’t work, Jasmine gets an active form of vitamin D in medicine form every morning called 1 alpha calcidol which does the job for her.

She also gets calcium acetate with every feed so that it binds with the phosphates in her milk and gets rid of them in her urine. Normally, her PTH would help her kidneys to regulate phosphate reabsorption but since they don’t, the calcium acetate does it for her. It is a balancing act though, giving her too much calcium can lead to other complications, so that is why her PTH and calcium levels (serum and ions) are measured at clinics.

It is amazing how much work the kidneys do, regulated by hormones, and even more amazing how many ways our medical team replace all the things Jasmine’s kidneys don’t do, so that she can grow well. We are in awe of, and very grateful for, their great skill and dedication.

We had a very relaxing time this weekend with plenty of time for reading and cooking, which was just what the doctor ordered, inbetween our concern about Jasmine’s blood pressure.

Neil did a stella job yesterday of changing Jasmine’s sterile dressing which covers her PD catheter exit site in her abdomen. It looked absolutely fantastic and very neat.

This morning we got up early to walk down to the GOSH Outpatients Clinic via St Pancras for a nice breakfast, after a hectic night: Jasmine vomited at 3am, 5am, 5.30am and 7am.

It was a busy morning in clinics. Jasmine was weighed (4.82kgs) and measured (59cms) and her blood pressure taken (82). They are still concerned about the extra fluid she has on board, so the dietician has reduced her milk intake to 500mls and concentrated the recipe. Hopefully, this will help her overnight vomiting as she had been doing so well. Unfortunately, since our last clinic she has vomited more than usual and hasn’t put on any weight. It is a balancing act of giving her enough nourishment to grow and enough dialysis to clean her blood and take off the excess fluid without making her sick. The renal team at clinic have to constantly tweak things to keep up with her development and to encourage her to grow.

Part way through our appointment we went to the Cardiac Department inside GOSH where Jasmine had her heart examined. It was very busy because they had a shortage of technicians, so we had a bit of a wait.

Some mothers may say that they know their children inside out. With Jasmine, I have taken it to a new level. Today, I saw inside her heart and watched the blood flow through the chambers when she had her echocardiogram. When she was a GOSH in-patient I looked at cross-sections of her brain and watched the blood flow through the large veins in her head when she had an ultrasound on her skull. At home, I regularly inspect the contents of her stomach via her NG tube. I know my daughter, scarily well.

During the echocardiogram, the technician said that Jasmine’s heart looked fine, but we will find out the extended results tomorrow or the day after.

After our visit to the Cardiac Department we went back round to the clinic and Jasmine’s had her bloods done and then we popped up to the ward to say hello and return a blood pressure cuff that we had borrowed whilst we were all investigating cuffs and different readings and ambulatory cuffs the other week. They were very busy today and had five babies in there. One of the nurses said that it felt more like a creche. The nurses on night duty have been very busy with five babies crying altogether.

We finally left the hospital and went for a late lunch and then got the bus home. It is hot today so Jasmine is lying in her cot having a well deserved snooze.