On goodbye formula!

By | #teammikaere | No Comments

One of the things that happened in the past year was we got Mikaere off formula and onto the blended diet. It wasn’t an easy decision and there were a few heated discussions with our dietician, but the long and short of it is that nutritionally complete formula had ingredients high in glycine in it. I’m not feeding my kid the very thing he can’t process. There is one formula that is glycine free, but it has other side effects that make it not worth trying.

And so, off we went, easing ourselves into the blended diet. I kept extensive spreadsheets for working out calorie intake and micronutrients. I was bit overwhelmed but I started small. One meal a day, at first. Meat, vege, a carb/grain along with some fats (lots of fats, avocado, coconut oil, peanut butter). After a while I added in prunes (as a natural laxative, so we could stop using the horrid movicol) and then I started throwing in some Brazil nuts, as selenium helps is an immune booster.

We moved to two meals a day. He was vomiting less, and seemed more aware. He was tolerating it like a champ!

After a few months I added a breakfast – weetabix, with fruit and honey, with coconut milk. The fruit changes morning to morning, depending on what’s in the fridge. When that became part of the routine it was just the night feed. Porridge, mostly. More fruit, more honey, more peanut butter.

Then I got a bit brazen, and sometimes I’ll change it up and Mikaere will eat what we eat, but blended.

Sometimes if I felt like he could use the extra calories I’ll add in a put of coconut/chocolate pudding (a whopping 100kcal per 45g!) to his feed (it goes through the tube which is why it’s okay to mix meat with chocolate like some kind of magic chilli mix. He never has to taste it). Or if we’re out, an nice dollop of olive oil.

The great thing about this is he started eating oral tasters. We’d still put the blend on through the tube, but he’ll have a savoury/sweet course. Blended, to a nice easily manageable purée. Bangers and mash. Chicken and lentil dhal. Caribbean jerk chicken.

Dessert is usually chocolate pudding or a fruit/yoghurt purée (guess which one he prefers?!)

Overall he’s put on weight, and is managing MUCH better on the blended diet than he could on formula.

So, blended diet wins for us. I don’t fully understand why the blended diet isn’t more wildly supportive, or why we had to fight with our dietician. (I think it’s because nutricia, who provide the button refuse to state their equipment is safe with the blended diet, but it’s because they also provide all the milk formulas, so encouraging business away from their products would be bad for business. If a manufacturer can’t recommend a particular practice, then I guess the NHS can’t? Even though it’s most cost effective for the NHS, often better for the children and with less processing and packaging, better for the environment?)

The other stupid thing is that if it didn’t work with the mickey button (the button between the tube and Mikaere’s stomach that works a bit like a tiny pipe into his belly) and it got blocked, all that would happen is that I’d deflate the balloon, pull the button out, clear the blockage and put it back in again.

Anyway, I fought the fight and I realised that essentially as long as I’m not causing any harm it’s really up to me to decide what’s best (that comes with the caveat that I do my due diligence, discuss with our medical team and research the crap out of whatever it is I’m thinking of doing – I can decide whats best based on an informed opinion. I’m not a maverick, hey). And after all my research on the blended diet and formula, its perhaps no surprise we’ve switched to the blended diet. 
This by far is one of the best decisions we ever made for our boy. Hurrah Blended Diets!

On finally putting on weight!

By | #teammikaere | No Comments

Woohooo!!!!! Thank fuck – Mikaere is gaining weight again. It was scary to watch his weight fall off, the beautiful chub of his cheeks disappear, his little arms and legs get more defined. That with every vomit I knew he was losing calories, and I watched at our weekly weigh in as the numbers went down and down and down. He got to under the 20% percentile – which isn’t a huge deal. He looked healthy (everyone kept saying he he was growing up, but it was because he lost all his baby weight!) and was still alert and aware, still active. There was a reason he was vomiting (#borderlineGastroRegret) and so we were reassured by our team that it was okay.

But as a mama, it was NOT okay. There was always the fear from our dietician that if he couldn’t get his weight up a ‘nutritionally complete’ formula was in Mikaere’s future, and as someone who hates the idea of processed anything (particularly when some of the ingredients are high in glycine aaand its stored in plastic bottles – so terrible!) I went on the offensive.

The first trick was getting the vomits down – we reduced his feeds from 4 meals with three snacks to four meals period, increasing the calories and the feed time, reducing the volume. We got to three hours on/three hours off. We hadn’t been on this schedule since we were on end of life care in hospice.

We moved away from regular formula to the blended diet where I painstakingly worked out the calories of each blend, going for high calorie low volume (he eats a lot of avocado, peanut butter, coconut oil and coconut yoghurt). It’s hard work and I have spreadsheets coming out my ears but you know what? It WORKED!

Because my baby is putting on weight. There is something beautiful about all that hard work and extra effort paying off in tangible numbers. Something beautiful that is mostly epic amounts of relief.

It’s even more likely that his was putting on weight had little to do with me and more because Mikaere very gradually stopped vomiting as frequently. For every feed he kept down he gave himself a better chance of putting on weight. That’s not to say the vomits have stopped, because they haven’t. We’re still at at least a vomit a day. Sometimes too. But against the 4-5 vomits we were having? I’ll take that improvement. In fact, even yesterday he had his first vomit free day in forever, so that’s positive!

I feel like I’m on high. When he reaches the 50th percentile, I’ll reduce the calories to a more appropriate level and start adding in more nutrition. We’re not there yet but that his weight is going up? I’m pleased. So so pleased.


On being post gastro

By | #teammikaere | No Comments

We’ve had the gastro for a while now, and I was surprised at how some things have changed.  The biggest being Mikaere doesn’t have the NG tube anymore, which means there is nothing on his face. Spelling it out – when he’s in the buggy you can’t tell that he has a metabolic disorder. He looks neuro-typical.

This means that the attention he gets has dramatically increased when we’re out and about

The scared ‘there is something wrong with this baby’ looks and side comments and fear when people peer into the depths of the buggy has gone. Other parents give me knowing smiles (what is it they know? I feel like there’s a shared secret I don’t get) and people now want to ask about how old he is and how tall he is and tell me how precious he looks. That annoys me, because Mikaere hasn’t changed, just people’s perception of him. Initially I wanted to explain about his disorder, tell them in detail about NKH but I soon realised that one, they don’t want to hear it, and two it takes up waaay too much time and all I really want to do is finish shopping and get Mikaere home away from possible-germ-carrying strangers.

It’s not all bad though, Mikaere still goes for his nose when he’s upset, but we don’t stop his hands anymore. Which means he’s got full access to touching his face. We don’t have to pass tubes anymore and I’m delighted we’re not dealing with the screams from that. Not trying to get an aspirate has been liberating. We’ve started a pseudo-blended diet, which has been good for Mikaere, I think.

The wound is healing nicely, slowly but surely. I’m positive it would have healed even faster has Mikaere not pulled out his stitches yesterday. We’re a few weeks past the gastro now and the button is at the right spot for him to reach without having to support his elbow or move his shoulder in a big sweeping movement. It’s in the sweet spot of reaching. So reach he did and with one big yank had pulled the stitches off the top of the button and almost pulled the whole thing out of his stomach. I had a heart attack and my poor sweet boy screamed. Good thing we were already in hospital for another appointment. And rushed upstairs to the ward to find the on-call surgical reg, who pushed the button back in and restitched what he could.

So cheeky. Mikaere’s clearly been a bit more sore than usual and on top of that he’s not tolerating his feeds/meds as well as he usually would. Which means we’re in the world of all the vomiting. Like, projectile out the nose vomiting. All the time. Everywhere.

We’ve slowed down the rate at which we feed him, the volume and what we’re feeding him (no advice needed, is what I’m saying). Everything is gentle gentle. We vent frequently, the feed goes across three hours (previously took half an hour). He will eat a tiny amount orally, but no where near where he used to. So we spend a large portion of our days feeding.

I’m getting really good at getting baby food vomit stains out of things, too.

Hey ho. Give us a few weeks of healing time and I’m positive things will be better.

I can’t believe we’re on the other side. Mikaere has a gastrostomy. Hallelujah!

On eating and diets and feeding tube awareness week

By | #teammikaere | No Comments

It’s Feeding Tube Awareness Week this week – it’s where I’m allowed to shake my fist at strangers for looking so horrified when they realise Mikaere has a tube in his face. They go from smiling in anticipation as they peer into the depths of the buggy to pulling a face and looking away, not making eye contact. Or there will be the weird whispers (I can HEAR YOU) about how ‘that baby has a tube in his face’.

Kidding. I won’t shake my fist but I will give an epic death stare.

My kid has a feeding tube, yes. Bar three glorious/terrifyingly difficult weeks before he went into his seizure coma, he’s had one his entire 15 months. Without his tube there would be no eating, no meds and no thriving. That’s what the tube is there for.

I’ve talked about Mikaere’s NG tube before. How it works, what it does (delivers medication and food into his belly, by passing his mouth/throat. Which means it’s got nothing to do with breathing – probably the second common comment after the obvious ‘theres a tube in his face’). I’ve also talked about how we’re still waiting for the next step – a gastrostomy (where of instead of down his throat a tube will go through his abdomen straight into his belly).

I’ve even talked about safe feeding, and how a few months back Mikaere was so ill, it wasn’t safe to eat and he was declared nil by mouth. I’ve never been more grateful that Mikaere had a tube where we could still feed him.

As it stands, Mikaere is a different kid today. SO different from that sick little baby. His swallow is awesome and safe he’s protecting his airway like a CHAMP. He’s eating maybe half his feeds orally.

However, the things Mikaere is eating isn’t like a neuro-typical kid. No finger foods. Nothing solid. It’s all pureéd goodness and formula. Also… as a side effect of him being super ill beginning of December, Mikaere lost a lot of weight.

He’s been gaining, but he’s not anywhere near where he should be. As an example: Mikaere is height wise in the 98 percentile range. He’s LONG. Super long. Or tall, I guess is what you’d say if he was standing upright. But weight wise, Mikaere is below the 25 percentile. He’s skinny. He’s lost all his baby weight.

So we saw our nutritionist and looked over his diet, and while we’ve introduced purées it’s not been quite enough.
Our dietician has suggested an older kid formula equivalent with more calories… but it feels less like a formula and more like a “nutritionally complete” chemical liquid stored in tiny plastic bottles.

Other neurotypical kids aren’t on it, why does Mikaere need to be? So instead of chemically made up formula, we’ve been stepping it up. I’ve started introducing other things. Calorie dense foods. Avocado. Cream. Cheese. Honey. Chocolate mousse (that one goes down a treat). He often gets a pudding after meals. The calories, they are going in. Take that, nutritionally complete chemical formula.

Having that conversation with our dietician wasn’t particularly easy. When I talked about a blended diet she practically panicked and said ‘let’s not be too hasty’. But here’s the thing – when I start weaning Mikaere off formula, I’m not going to replace it with chemical milk. I’m just not going to. I hate the idea of feeding it to him.

I know that the blended diet is controversial (apparently the tubes aren’t made for blended food… only formula. Does that not sound like the biggest line of bs ever? If it is blended correctly it’ll be fine and unlikely to block the tube). But as far as I can tell, considering that Mikaere is eating part of his meals orally, we’re headed for a blended diet.

Which is to say, a blended diet through a tube. No formula. No weird replacement chemical milk.

And I know. I know this isn’t a thing you usually have to think about it – unless you’re knee deep two feet all in the world of special needs, tubes and feeding and weird chemical older kid meal replacement formula are not things you need to think about.

So, in the interest of Feeding Tube Awareness Week – next time you see a kid with tube, please smile and say how cute they are. When you see a parent feeding a child with a syringe through a tube that goes into their belly – don’t look away. Smile at them. Go say hi, say that the green goop looks delicious and their kid is the most adorable you’ve seen. If going up to talk is too much, just meet their eyes and smile.

I promise it’ll make their day.


On feeding Kai purée when he’s nil by mouth

By | #teammikaere | No Comments

Our speech and language therapist (SALT) came by last week. I like her, she’s lovely. It’s her job to assess Kai’s suck and swallow, ensuring that it’s safe for him to feed. That his swallow is good and his suck solid and that we’re doing everything we can to encourage oral feeding in a manner that’s safe.

She decided that Kai should be nil by mouth. That we should put nothing in his mouth, that his suck was nonexistent (which we knew) and his swallow was unsafe. Kai would hold anything in his mouth in his cheeks. Or not even his cheeks, he’d drool it out if positioned correctly.

100% tube fed.

That was hard to hear. Also, completely impractical for us. Since he’s been ill, Kai has been maybe 98% tube fed. Part of having the ng tube is that we check each and every time we use it to ensure it’s in his stomach and not in his lungs. Every time. Because every cough or vomit could move the tube up his throat, and it could move from his belly to his lungs. If we put something down the tube and it was in his lungs, we could drown him. Nothing like an element of extreme danger when feeding your own child, hey?

But, to check Kai has to have something in his belly to aspirate – for us to draw up the tube to know it’s in the right place. If we don’t get an aspirate, you can’t just put things down the tube – there’s that risk of drowning.

So we do the aspirate dance. We reposition him, lie him on his left side, sit him up, push a small amount of air down the tube. We pull the tube out slightly and push it back down. If we still don’t get an aspirate (which is most of the time) what we would give him something orally till there was enough in his stomach to get an aspirate.

If Kai is nil by mouth, we’d need to pull the tube out and pass a new one. If we still didn’t get an aspirate (which is likely, because there’s probably nothing wrong with the tube), our nurse’s advice is to go into the a&e and get an X-ray.


No. Just no. I am not taking my kid into the a&e and exposing him to all the risks of the other sick children to get an X-ray and mistime all his meds 3-4 times a day because we can’t get an aspirate. It was the most impractical piece of advice I’d ever heard.

What we need is a gastrostomy, because with a gastro you know it’s in the stomach. It’s surgically placed in the stomach and has zero chance of moving with a cough or a vomit.

But we’re still waiting for that.

So, we very very carefully weigh the risks.

It’s the risk of aspirating something into Kai’s lungs by giving him something oral vs the risk of Kai catching something while we wait in the a&e waiting room, and the risk of increased seizures while his medication schedule is all out of whack while we wait on the hospital time.

There are other considerations: the risk of the tube moving into Kai’s lungs is not zero, but it is small. What’s more, if it’s blocking his airway we should be able to tell, in the same way we can tell when he’s working harder to breathe with the increased secretions of a cold. It’s not a 100% reliable method (and we don’t rely on it) but it’s something to think on.

The second is that Kai is recovering from a horrific respiratory virus. His body is exhausted and everything is out of whack. He’s lost some skills (womp) but we’re hoping it’s a transient loss – that he’ll regain those skills. What’s more, Kai had a seizure before our SALT arrived. She saw Kai for maybe half an hour, at a time when he was particularly low. Her view of his Kai’s ability to suck and swallow is based on that snapshot.

However, my perspective is based on hours and hours with Kai. Sure enough, later in the day when Kai was positively perky, he was showing much more interest in swallowing and sucking. The next day was even better, with him managing a dummy with enthusiasm.

So, I took a calculated risk and fed Kai some purée. Which of course he nommed down like a champ. It wasn’t a lot of purée, maybe an ice cube amount, and it wasn’t pre-illness standards, there was a second swallow to clear what was in his mouth, but he took just enough to enjoy himself and to get an aspirate.

This is one of those moments where I hear what our medical professionals are telling us, and I absolutely consider it, but then I look at Kai and figure out what is really best for him.

If Kai is awake and aware and doing just fine, and managing his secretions, sure, let’s try purée or a bottle. Just a small amount, because I don’t fancy tiring him out eating. But enough to get an aspirate and for him to enjoy the sensation of food in his mouth and for him to use the muscles required for sucking and swallowing.

If Kai was drowsy, or had a seizure earlier in the day or was maybe a bit less with it, I’d never try feed him purée. I might try a tiny amount cooled boiled water if I thought he was awake and aware enough to swallow it (if he aspirated, cooled boiled water is going to be less harmful in his lungs than say a mouthful of chickpea and sun-dried tomato purèe).

If I couldn’t wake him, and he wasn’t managing his secretions I wouldn’t even try the water. I’d take him into a&e for that X-ray.

I’m not an idiot, despite how our medical team dole out advice and insist they know best. My problem is they see Kai for a short amount of time, a tiny snapshot, and make huge sweeping decisions that I’m expected to follow without hesitation or argument. I’m meant to trust our team implicitly.

But they’re just people. Who are sometimes wrong, who don’t look at the big picture and who don’t have the perspective I do. They’re also bound by NHS policy, which is designed for the cost saving average, rather than the wellbeing of Kai specifically.

Becoming a special needs parent is about becoming an expert in your child, and in advocating for Kai, I perhaps stand up to our team more than other parents do. Or at least I get that impression from the manner in which I’m treated when I disagree.

So. I’m feeding my son purée when he’s been declared nil by mouth.

I don’t enjoy being in this position, but hey ho. Bring on that gastrostomy, hey?