Tube Weaning: Week Four

We’re still going….

Day 22

I woke up to a response from the feeding school about the videos I sent them of him eating. One of him munching chocolate cake and another of him clearly showing interest, hunger and a desire to eat but everything that went in, coming out. The response agreed with my observations and explained that he thinks he is eating and suggested myself eating with him and showing exaggerated swallows (I’ve already tried this, he has no interest in watching me eat) and using a mirror at the table so he can see himself which had worked for another child similar to Jaxon. So that’s me off to Amazon.

Another untouched breakfast but 250mls of water down so swings and roundabouts ay. He had bacon, scrambled egg and cheese to try for breakfast. Nada interest.

I thought for lunch I would give him rice and have some cheese and broccoli pasta sauce. I expected it to go down well as rice was one of the first items he appeared to (accidentally) swallow and I was totally surprised that he enjoyed licking the sauce off my pasta a few days ago. I was sad to watch the rice pop straight back out of the corners of his mouth no matter how much eagerness he showed to eat it. The pasta was not appealing at all it seemed. I dug out some crab sticks and makarel from the fridge but he pretty much pretended they weren’t there. However, I was surprised when I got myself a biscuit and he reached out for it OK JAXON! I used my thumb to crush it on his table and he munched away and swallowed at least an eighth of it!

Dinner time I tried him with chips and onion rings. He brought a chip to his mouth a maximum of 4 times. Ok, brownie it is. I’m pretty sure he ate about one and a half brownie bites (that you get in a box from sainsburys) which I was pretty darn happy with – CALORIES. I the started nibbling a choc chip hob nob again and that hand reached out, sweet tooth mr? He nibbled a few crumbs which was delightful.

I just checked the messaging system, I’ve been told off for still feeding him in the day. Sighhhh. I’ve been deviating a little, not moving along as quickly as they suggest, lingering for a few days or reverting back when his weight drops. I’ve continued to fill in his daily intakes on their logs honestly and they’ve obviously just noticed and given me a slap on the wrist. However the slap did come with some reassurance that he is behaving how they expect him to and want him too and he IS moving forward etc etc so *breathe*. They’ve also asked if I would consider the feeding school despite the travel which took me aback as they rejected him from the school and said netcoaching was the only option, are they going to change their mind?!

Food orally consumed: 1.5x brownie bites and possibly around 1/4 of a choc chip hob nob
Fluids orally consumed: 500mls
Weight: 8.6kg

Day 23

For the first time, Jaxon was interested in eating this morning. I let him sleep and wake up in his own time and put him in his chair around 8.30am. He tasted bacon and then took me by surprise when he not only entertained Frosties (dry) but actually swallows them! He then went on to have a brownie (obv) most of which was consumed.

He napped so lunch was late around 2pm but he enjoyed some more bacon tastes and swallowed one brownie (each brownie is 79calories and just the bite size ones).

I drove us to my grandmas for a visit thinking we’d grab a McDonald’s on the way back to try him with the burger meat again but on the way there he was fuming. I asked if he was hungry and he said YEAH. I asked if he wanted chips and he said YEAH. It’s not guaranteed he’s actually responding appropriately to these questions with understanding but I try to communicate with him as much as possible. I did the drive through and he munched fries in his car seat but when we got to my grans he was only licking them with little interest. I feared it was the change of environment distracting him. An hour later he pointed to quavers in the kitchen so I gave him them and (aswel as throwing them everywhere and crushing them into the carpet) he swallowed a few small bites!

When we got him I gave him a brownie, already late for bed but thinking of it as guaranteed intake and he sat there munching it so well that I didn’t want to get him up and to bed until he had no more interest. He had around 2.5 brownie bites!

Best day to date!

Until it came to weight o’clock and it read 8.2kg.

Food orally consumed: 3-4 x brownie bites and some teeny tiny quaver swallows.
Fluids orally consumed: 775mls!
Weight: 8.2kg 😦

Day 24

What a night. Jaxon woke at 2am and when I went into him he had chewed through his feeding tube so not only was all the water being pumped in was leaking out on it’s way to him, his own stomach contents we’re leaking out too. Disaster when water equals weight too, the last thing we need is him dehydrated. Thank god he drank so much yesterday. I put on a new tube set and offered him some water orally which he eagerly took, I’m hoping that made up for what was missing. He fell back to sleep at around 4am but I was wide awake on TikTok until my alarm goes off at 6am (we have his first adjustment at the chiropractor at 9am and it’s an hour away) by which time I’m just about being hit over the head with tiredness. I fall asleep.

Wake up at 9.30am and Jaxons still asleep. Sh*t.

Now Im anxious. Why is he still sleeping? Is he lethargic? I wake him and he’s moody, does he have hunger pains? A dehydration headache? He refuses water orally, why?! I can feel my anxiety building irrationally, triggered by yesterdays weight loss.

Having breakfast at 10am knocks off the whole day in my world of anxiety. We don’t have the time we would normally have in the day and he needs to get more in, this is a bad day!

He’s not as interested in food or water at breakfast but he does swallow maybe half a brownie and drinks around 100mls. I need a repeat of yesterday please! What is this?!

Okay, it’s 11am and he’s swallowing small bits of minced beef, this is progress. When I’m documenting this on his daily log “brownie swallows” “minced beef swallows” it puts in black and white his progress. That’s food being consumed, not tastes, swallows. This is a bloody miracle.

What a rollercoaster.

It’s also worth noting for the past week he has had a chesty cold; snotty nose, cough, mucus on his chest. So actually, he probably lost some appetite and has struggled to taste food. He’s doing great.

We had a great evening at nandos where I half went to avoid needing to sweep and mop my kitchen floor for the 70th time this month and half to enjoy a date with my little love. Ugh what a rollercoaster!

Food orally consumed: small brownie and minced beef swallows and A CHEEKY NANDOS
Fluids orally consumed: 400mls
Weight: 8.6kg

Day 25

no diary entry

Of course I got him a beauty mirror so I can use it too!

Day 26

I always feel like when he’s with other people I’m in the dark about what he’s having and I worry he’s not being offered it ‘right’. Not that anybody else is wrong but that nobody else has had 91 message exchanges with the feeding school, or observed him with the intensity that I have. Or maybe I haven’t passed on that the food needs to be cut into crumb sizes and only offered a small amount at a time to not overwhelm him. I then feel guilty hWe had a busy morning again. We love Wednesday mornings now; the chiropractor followed by Footprints conductive education. He’s doing so so well but breakfast ends up rushed so we can leave the house at 8.20am and we’re not back until 12.30pm. With him not eating properly, feeding him in the car doesn’t work so I keep leaving Footprints early worrying that he’s using all his energy and he’s got non to waste!

However, today another mum told me how her daughter is 3 years old and 10kg. She explained that she has 4P deletion which has its own weight chart and therefore no one has worried about her weight. Jaxon has something called 1p36 deletion syndrome and another diagnosis of Bartters syndrome. I haven’t heard anyone mention a seperate weight chart. It would make complete sense that with so many organs struggling (Jaxons heart is 4x the size it should be, his kidneys are ‘leaky’ and he has cysts in the brain which we don’t know much about) then his weight would suffer. Surely it’s unfair to mark him on a chart comparing him to typically healthy babies? Of course he’s not going to be on there. I’ve called the geneticist for some insight. The 1p36 mums tell me they’re not aware of another growth chart for this syndrome and that half are underweight and half are overweight. I’ll be pursuing this though as weight has been a huge worry for me but he’s doing so well and isn’t lethargic and has been recovering well from illnesses which counteract him being malnourished.

He’s not been drinking great today (only 300mls all day!) which is bloody typical because we’ve got bloods tomorrow morning!

Food orally consumed: small amounts
Fluids orally consumed: 300mls
Weight: 8.7kg

Day 27

We had bloods this morning so I woke him at 7am. He tends to need a while to wake up before having any interest in food but don’t we all. However, it makes it difficult when we have appointments to get too. Another slow day on the drinking which I’m praying doesn’t show up in his blood results, I’ve text and asked for them to feed the results back to me when possible as often of they’re normal you won’t hear anything. Really quite nervous for them to be okay as his professionals seemed concerned about the programme before we even started it so I don’t want to give them any medical reason to intervene.

He’s at nursery today and I asked them to give him extra time to eat which they were super about.

The renal doc called – bloods all gone WAHOOO. Potassium haemolysed which basically means they didn’t get a result for that but he asked if I was concerned which I’m not so he said we could do bloods again at the beginning of Feb.

Day 28

Jaxon really doesn’t just wake up in the morning! Every morning at 7am I’m ‘Jaxooon’ ‘Jaxoooon’ and he tries to roll over and ignore me, do I have a teenager already!?

Breakfast is okay but I notice he doesn’t tend to swallow the bacon anymore.He tried to bread and butter, briefly. Chocolate cake went down fine of course. Though even after over an hour in his chair I still feel I’m rushing him to get him to nursery.

Nursery said he did well at lunch, he appears to be actually eating some now with less going down him (onto the floor). He enjoyed some crisps and his cake but didn’t really touch the rice. Why does this kid go off everything after I think it’s a concrete?!

Dinner he munched and munched through chips and burger meat followed by chocolate cake. Lots coming straight back out but I’m confident we’re getting more and more swallows.

Food orally consumed: chocolate cake, crisps, burger meat and fries!
Fluids orally consumed: 400mls
Weight: 8.9kg!!!!!

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