Jasmine Stalker-Firth

We weigh Jasmine every morning and every evening to check that she is not retaining extra fluid, so it is difficult to keep her weight gain in perspective and I get quite agitated, especially when she vomits a lot. So today I put this t-shirt on her after another vomit and noticed that it is quite small compared to how she used to look in it. Aha! She is growing – it used to come down to her knees. I am thrilled.

On Friday, Sarah took Jasmine and I out to lunch in Soho and showed us a good time. And on top of that, Jasmine got some lovely gifts: a fabulous flowery t-shirt from Sarah and another soft woolly blanket from her Nan (thank you very much).

Jasmine’s cousin Matthew is one-years old and having a party today. We don’t think about how much fiddling we do on a daily basis, it is our norm. Today though, it would have fabulous been to throw some stuff in a bag, tuck the baby under one arm, hop on the train and go to the party. Unfortunately, a baby on dialysis and spontaneity just don’t sit together and even a trip to the park requires military style planning. So I guess we will just have to have a little party of our own in Matthew’s honour.

The terrible wind and screaming episodes that Jasmine was having seem to have stopped, and her vomiting has reduced. We totally ran out of bibs this morning as there are 10 drying on the clothes-horse. So Neil wrapped Jasmine in a towel and left her vomit to her heart’s content. Poor thing. We have taken her back off her overnight feed and we get a great night’s sleep. Jasmine then wakes at 6am and I prop her up in the cot, so that she can cough up her mucus (NG by-product boo hiss!) and then I give her morning feed. This seems to work really well.

Yesterday she was so quiet all day – no screaming fits, just singing and being a happy baby. I found it all a bit unnerving. I had forgotten these last few weeks, that cool non-screaming baby is her default mode. Neil said that she is calm and easy-going just like him and not like her mother, which is a bit rich coming from a man who after cooking dinner last night, did a lap of honour round the flat and then stood on a yellow-pages podium whilst I presented him with a medal. Dinner was tasty though: egg fu yung, but there was only a main course, unless of course you count the beer and crisps aperitif he organised for us. He even got me a bottle of Theakston’s Old Peculiar. Ahhh!

We are now the proud owners of an epi-pen. So if you ever go into anaphalatic shock after dinner round ours, we can stab you in the leg and phone the paramedics. Fantastic! We are very responsible hosts.

We came home from GOSH 12 weeks ago today. Our girl is bright and beautiful and we love her.

Yesterday we went to GOSH clinic and they seemed pleased with her progress and they said that Jasmine was looking well. So Neil and I looked through our old photos and we can see a big difference too, she does look a lot bigger than when she was in the hospital. Jasmine had her bloods taken and the doctor checked her for hernias (we asked as I was just curious. I know they are common and Jasmine has had them before, but I wouldn’t know how to identify one so I thought I would just get her the once over).

We did several rounds of ‘Jasmine not taking her milk’, as I don’t want to give up on this yet. They were very nice and patient with me and the doctor gently explained that it was unusual for Jasmine to have fed orally for so long and now that she seems to have given up feeding she resembles a baby in renal failure. The most important thing is to get her food into her so that she can grow well. She is way down at the very bottom of the growth charts so she has some catching up to do.

The doctor added that in her experience, renal failure babies all like strong tasting savoury foods and hate sweet things and once she gets older Jasmine will love marmite fingers. I love marmite fingers too so got a bit excited at this point. It is true though, Jasmine loves her Ranitidine which is a horrible mouth-numbing antacid medicine which tastes just like mouthwash. The doctor also said that Jasmine won’t have any problems eating in later life since she has fed so well for this long. And again, it is unusual that she is enjoying some solids.

I am disappointed but I will go on giving her food and keep trying her on milk. Today so far, she hasn’t wanted any milk at all, so I have given her 300mls by tube and she has another 200mls to go. But she has eaten Farley’s rusk mixed in water and also she has had some spinach, parsnip and basil puree. She enjoyed both and smacked her little chops. It is just milk and the sweetness she doesn’t want, as I tried her on a banana the other day and she hated it. So I am currently pondering how best to mix her milk with things which are savoury in order to encourage her to want to drink milk. These Farley’s rusks might help as I got the reduced sugar ones and they weren’t too sweet at all. Neil and I had some and they are very good with a cup of tea.

It has been so hot these last few days that Jasmine has been spending most of the last few days just wearing her pants. We keep taking her dress off to cool her down. We find these little pants really useful and have lots of pairs. She wears them over her nappy so that we can tuck in PD catheter into them. Currently she is lying in her cot just in her pants, sound asleep clutching her Mr Tag-a-long.

After the clinic yesterday we went to the pub for beer and chips, which was fantastic, and then we went to the Hadrian exhibition at the British Museum, which wasn’t. It was so hot that I carried Jasmine around the exhibition in my arms. She was unimpressed about the whole thing, but didn’t mind people making a fuss of her – as per usual.

Jasmine doesn’t need another check up for three weeks which is a first. Neil said that he was a bit alarmed about not going back for three weeks. I don’t feel the same way, which is a bit weird, as normally I worry about everything but knowing that GOSH are just at the end of the telephone is very comforting. They are, as always, a brilliant bunch of people, and it makes me cry to think about how much they do for Jasmine.

When Neil read Christopher Alexander’s Nature of Order we spent a long time discussing how Christopher Alexander looks just like Neil’s Uncle Alastair. This weekend we managed to get some proof. So if anyone ever need a Christopher Alexander lookalike to impress their architecture friends at all social events, just let us know.

We have had a lovely busy weekend. Jasmine is quite the party girl. Our socialising started on Friday evening when Trish came round for dinner. I had spent the day trying to decide what to cook but in the end burnt myself out looking through ‘Good Housekeeping’ in between dialysis and lying about complaining about the heat so that poor Trish had to make do with pizza and salad. She was very nice about it and we all had a lovely time.

The following morning we got up early and I was on dialysis duty (Neil and I take turns). I was on fire: I disconnected Jasmine, got rid of all the stuff on the machine, changed Jasmine’s sterile PD dressing, then set up the machine for the evening time. It was a personal best of about 55 minutes. After that we had breakfast and went off to the Grandparents Firth.

The neighbours came to meet Jasmine as they have been following her progress here (Hello to the Bunce Family) and then we wandered inside so that Jasmine got to meet her second cousins and Great Aunts and Great Uncle for the first time, who were all very kind and brought her lovely gifts: Jasmine loves her new Mr Tagalong and chews him constantly as he small enough for her to clutch on to all the time. And as soon as the weather cools down, Jasmine will be snuggling under her beautiful new quilt. It was a baking hot day so Jasmine was irritable and everyone was brilliant pushing her up and down the garden until she went off to sleep. We had a lovely time and had to leave all too soon to come home.

Today we went for a delicious lunch at Aarti’s and Jasmine got to meet her family, who were very kind and gave Jasmine a beautiful dress. Aarti’s Mum and Gran were very lovely and patient and spent ages nursing Jasmine who was irritable again with the heat. Aarti’s Mum finally got Jasmine to sleep lying in front of a big fan. We had a lovely afternoon and were sad to have to say goodbye and come home.

I set up the machine tonight in our flat whilst Neil and Jasmine waited outside in the cool breeze of our courtyard. It was absolutely baking as you have to keep the windows shut during sterile procedures. They weren’t in any rush to come in and when they finally arrived, Neil admitted that he had bought himself a nice little can of gin and tonic and enjoyed a little cocktail hour chatting to his daughter whilst I was boiling in the flat. I admire his thinking.

We got Jasmine on earlier than usual tonight as we have to go to GOSH clinic tomorrow so that we can see how she is doing. Jasmine is over 5kgs now and her blood pressure seems relatively stable, so hopefully this is proper baby weight and not fluid. It is difficult to tell the difference so we will have to wait and see. Jasmine is still refusing to drink her milk so we are feeding her using the pump – a bit depressing. However, she enjoys her vegetables and sips of water.

A man on the tube asked me what was wrong with Jasmine today and I gave my don’t want to talk about it if you don’t mind answer, but he did mind and looked really offended. I felt terrible for about an hour afterwards but probably less terrible than if he had started asking a million questions about kidneys. Mmm! I need to think about a better answer.

On Monday we went for our breakfast in Highgate. It was very nice. We went in Weatherspoons where they serve quorn sausages, which was very exciting. I had one of those and an egg banjo and Neil had a bacon butty and pots of tea. Jasmine took all of her feed and we were thrilled and then we wandered around the park and had a lovely time swinging each other about.

Alas the feeding well wasn’t to last. We have tube fed Jasmine most of the time since then. It is all getting a bit stressful. She will eat solids and drink water, but doesn’t want anymore milk. So now we have her on a continous feed, hooked up to her feed pump, to get this milk down her. I have spoken to the dieticians many times but they don’t have any solutions. Jasmine is in renal failure and according to them all babies in renal failure don’t feed. So, they treat her like a baby who doesn’t feed and has never fed and that is it. This approach has worked for other babies under their care, so it works for Jasmine.

She is sitting in her buggy puking and spluttering as I type this and I feel very tired and extremely violent. Perhaps I don’t understand anything at all about babies and feeding but, I just don’t believe that a baby, even one in renal failure, who fed perfectly well would overnight just stop feeding altogether, especially since it coincided with yet more feed changes. Her SMA mix is 250g of SMA to 550mls of water and on top of that we add three scoops of maxijul and one scoop of vitapro. We give her 500mls only. It is very sweet and would make me puke if I had to drink it all day.

Yesterday we put her on the continous feed all day as we were really tired. We went for a picnic in the park and then for a wander about near the Arsenal stadium. At one point Jasmine was a bit vomity and full of wind so I had her on my shoulder and the feed pump in a pack on my back and a woman stopped me to show me her daughter. She told me that her daughter had been tube fed for a year and then had a serious operation and now was fine. Her daughter looked big and happy and about six years old. This was very encouraging and very kind of her.

Today we are going to rest and regroup and then tomorrow we will start tinkering again, as we have a few new ideas up our sleeves.

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.