We don't do dairy

We're now almost two weeks into Life After Yogurt, and it hasn't gone as badly as I feared. I don't know if it's the dairy free, the new drugs or just a mysterious growth spurt, but suddenly the little dude is HUNGRY. I mean proper hungry - the kind where he starts crying if you don't shovel the food into his mouth fast enough. I've never seen anything like this before.

He's taken to the Alpro soya yogurts with gusto - sometimes finishing a whole adult sized pot. Yes, they're higher in sugar but frankly I don't care as long as he's eating. He's also noshing on dairy free custard which to me - a lover of all things yellow and custardy - tastes a bit wrong.

I also bought some fake cheese, but he seems to have gone off crispbreads for now, preferring to pick them up and drop them on the floor with a look of contempt on his face.

Best of all, I was overjoyed to discover that tinned spaghetti is dairy free. Oh joy! Last night he actually ate a whole (small) can of the stuff. Again - salt, sugar, blah. Again - don't care.

I did go dairy free myself too, to stop the evil cow-milkies getting into my own supply. I was quite up for the challenge - probably because when I told my partner he laughed and said "you'll never do it," which made me determined to prove him wrong. Three days on and I'm wandering wistfully up the Waitrose cheese aisle, ogling the brie. Problem? What problem.

But the funny thing was, he didn't protest as much as I thought about stopping breastfeeding. In fact he seems to like the bizarre no-milk milk they've prescribed for him, even though it smells of bleach. He's even overcome his horror of the bottle, swept aside by this manic new hunger. Well, he's got a lot of growing to do.

PS: apologies to Florence the Cow from Real People magazine whose image has been shanghaied above. I'm sorry I drew lines through you.

I. Can't. Even.

He's so ill. Four nights of violent sickness. One day where he didn't keep anything down, where there was blood in his vomit and he did nothing but cry. His cough is getting more violent, his lungs wheezier.

We took him back to the hospital to get drugs and he was given an inhaler. It takes both of us to hold him down and clamp his head in place while we puff the chemical into his lungs. His throat is sore with crying and cuddles don't help.

The night before his next dilatation is due to take place, his breathing is clear and it seems to be settling down. He wakes at 11.30 demanding a feed - handy as he's nil by mouth from midnight. He feeds. He chokes. His lungs are full of something - milk or vom, I don't know. And then he cries.

I lie in bed holding a writhing screaming wriggler in my arms and a wave of helplessness comes over me. I try cuddling him, then putting him down. I rock him and sing to him. He just screams louder.

Eventually at 2.30am I go downstairs with him and call up a baby stimulation video on my Youtube app. For some reason the sight of buzzing bees calms him for the first time in nearly three hours. At 3.30 he is asleep.

At the hospital they listen to his lungs and postpone the operation. He looks pale (probably because of the three hours' sleep) so they order blood tests. I hold him down for 25 minutes while two stressed nurses try and fail to find a vein in his white pudgy little foot. It's worse than the inhaler and tears are rolling down my cheeks. The nurse says nothing but hands me a paper towel, and I'm grateful.

The consultant says we now have to go dairy free. Me (because of my breast milk) and him. They have given me a new foul-smelling concoction, some kind of milk free milk, to try and get into him while banning yogurt and cheese, the two foods he actually likes. Oh great.

But we have to beat this reflux thing because if we don't this might happen. A huge irreversible operation. So the food fight goes on.

Just when you thought it was safe...

No matter how hard they try to make them cheerful and fun, children's wards are not happy places. There are kids crying out in pain, a little girl pushes back her curls to reveal an oxygen tube in her nose.

But the parents' faces are the worst. The kids are making the best of things, digging into the toys, rushing around the corridors or trying to guilt-trip more sweeties out of their families. But the parents stay bunched with anxious faces around each bedside. The ward is broken into little curtained bubbles of anxiety.

Yes, we are in hospital again.

We were lucky really, we went a whole year without having a stricture - which is where the scar tissue of his repair site tightens, causing the gullet to become blocked.

But just before his first birthday he developed a stinking cold which stuck around for a week. He became snotty - really, really snotty. Then he started throwing up snotty stuff, and couldn't even swallow milk.

It turns out that happy holiday we've been having from vomit wasn't just the drugs working - the stricture had been keeping the vom down for us. And that's why he couldn't eat the spaghetti pieces, no matter how small I cut them, and why he stopped being able to eat soft pear and peach.

He was taken in for a dilatation, which is where they sedate him, then push a small balloon device down his throat and inflate it, pushing the stricture out and stretching the area.

Before the stretch, his oesophagus had gone down to 4mm, it's now 1cm. He'll be back in two weeks for another one. The plan is to keep stretching the scar tissue, keeping it supple while he grows.

At least he's getting the help he needs. And although the children's ward isn't where we'd like to be, he's surrounded by amazing, hard-working professionals who keep him alive, and keep a smile on their faces while they're doing it. We've got a lot to be grateful for.

Fingerfood Meanz Heinz

We've been having a bit of a honeymoon period. A few weeks ago the doctor put him on a not-recommended but very effective drug called Domperidone. All of a sudden, the four times daily epic rivers of vom stopped.

The kid perked up. He looked more cheerful. He started to roll around a bit more - still no sign of crawling though. And just as things started to improve, we had our first appointment with the Speech and Language Therapist.

She watched him chomp happily through a selection of snacks and open his mouth wide for Mr Spoon.

So as far as she's concerned he's doing brilliantly. We just have to make sure that he experiences different textures as he grows.

With that in mind I started feeding him Things in Tins - duly mashed up with a fork of course.

Here's how it went:

Macaroni & Cheese: Hated it and who can blame him? I sampled some myself and it tastes like it's made of plastic. Sorry Heinz. I love you but you dropped the ball on this one.

Alphabetti Spaghetti: Loved it, enjoyed grabbing it with his fingers, dodging the hated spoons altogether. Unfortunately I can't seem to get the pasta mashed up small enough to go down. Lots of scary spluttering and choking ensued. Maybe when he's bigger...

Baked Beans: A hit! You can mash these things to a pulp and the texture is still thick enough for him to be able to pick them up. The only problem is it's a bit dry, so if he's in a 'I hate water' mood he does still have trouble swallowing it all down.

However he's rapidly learning what pace suits him, and learning to love feeding himself. I'm feeling hopeful.

Let him eat cake... and ice cream... and biscuits...

Like all good mummies I started out by being a bit obsessed about salt and sugar. I would have liked my little cherub to dine on nothing but pure organic vegetables and meat from locally produced sources, but unfortunately I earn less than a squillion pounds a month so I set a new standard for myself: fresh, home-cooked meals wherever possible with no added salt or sugar.

Oh no, my little one wasn't going to be begging for sweets and Maccy Ds - at least not until he was old enough to go to school, when I believed the other kids would corrupt him.

I spent hours lovingly boiling up veg and processing it down, I only bought healthy organic snacks - Organix Carrot Sticks are like cheesy wotsits without the cheese - or any flavour at all really. Although the kid loves them. I spent ages in the baby food aisle reading the small print on porridge packs trying to buy the unsweetened kind.

As for the dreaded Petits Filous pots - I used to refer to that as 'baby crack' - the gateway drug that gets them hooked on sugar.

But the dude had other ideas. He stopped eating. He rejected my delicious mashed veggies and refused to eat anything but those Organix corn snacks. His weight plateaued, his development stalled. Exasperated I called for help and was referred to a dietician.

"Stop worrying about salt and sugar," she said - there was a tiny tinge of weariness in her tone.

"Wha- what?" I wondered if there was a fault on the phone line. "But... it's bad... sugar... addictive... salt... poison..."

"Look" she said. "At the moment the important thing is to get him eating food, enjoying food and putting on weight. High calorie, high-fat foods that he will actually want to eat. Have you tried cake?"

Later that week I interviewed Sarah Beeson MBE, a health visitor with four decades' experience, and she told me there's something the HVs call "Muesli Belt Malnutrition."

Parents - usually middle-class over-anxious ones - are so desperate to instil healthy eating in their young ones that they'll start them on adult style low-fat, low-calorie diets right from the start. Banning white bread or pasta, choosing low fat spread instead of butter.

While that's pretty extreme and rare I can see how people end up in that situation. It's so hard to figure out what's right. You stand in the supermarket aisles paralysed, trying to work out a complicated algorithm of cost+taste+nutrition+ethics. Organic or mass produced? Added sugar or no flavour at all?

Enough.

That night my beloved made a chocolate cake (see above, it was bloody lovely) and we fed it crumb by crumb into our little boys mouth. It took ages but boy did he enjoy it.

He actually enjoyed something! Bring on the baby crack.

5 Things that have been The Answer

So for a while, after our holiday in Italy, Ricotta cheese was The Answer. We're always on the lookout for the Answer. Something that will suddenly sweep in like a magic wand and make everything work properly.

So far The Answer has been:

Corn snacks dipped in something
In the darkest days of spoon phobia these were the only way we could get anything into him - we'd dip the Organix carrot sticks, sweetcorn rings or tomato slices into the mush then generally encourage it in the direction of his mouth. For a while it worked - he would suck the mush off and sometimes even hold it out so we could put  more mush on. And then, just like that, he stopped being up for it.

Ricotta cheese
The great white hope of our trip to Italy. He loved this stuff. Not on a spoon obviously, but the great thing about it is that it breaks up into handy lumps that you can hand directly into his mouth. It's also lovely and creamy and you can mix spinach into it without destroying the taste. He really liked it, right up to the point when he just stopped being up for it.

Soft pears and nectarines
In Italy these were in abundance. Ripe, juicy and big as his head. We'd graze off the skin with our teeth then hold it in front of him and he'd bury his face in it, scraping the flesh off with his gums and having a whale of a time. This still works, provided he's in the right mood but now he has top teeth as well as bottom he sometimes takes a slightly-too big lump which causes lots of regurgitation and choking.

Pre prepared food in pouches
You know the things - they're in a kind of metallic bag with a plastic spout. They provide spoon free fun and he can control how much he's eating by sucking at the spout. This was fun for a while but then he stopped being up for it.

Crispbreads
I heard about these cardboardy wonders from the Tofs Facebook group, which you really must check out if you have a tofling. They're bite-and-dissolve like the the corn snacks but they're a better shape for spreading. When I first discovered these I was overjoyed. I smothered all sorts of things on them - we even managed to smuggle some of the Dreaded Enemy Avocado onto them, which he thoroughly enjoyed (it's a complicated relationship). He loved being in control, biting and nibbling at his own speed. But then he stopped being up for it.

When he stops being up for it, what he does is drop your lovingly prepared whatever straight on the floor, thereby rendering it instantly unusable (depending on how recently I've mopped.) With the crispbreads I was determined not to give up, they were just too good an opportunity.

I got to huge lengths to keep them from going stale and chewy. I break them into small bits and place them in front of him two by two. And sometimes he smiles upon them and puts them into his mouth.

In the course of all this I'm learning that there's no such thing as The Answer. There's no Aha moment, no convenient narrative turning point which makes everything click into place. Every crispbread eaten is progress, but some crispbreads will always end up on the floor. He sets the pace, he's in control.

But things are going in now, and some things are even staying in.

I don't think he's ready for this jelly

His body's too tofalicious for it babe.

He did like splattering it all over the table with his hand, though.

Mind the (incredibly narrow) gap

Sometimes I get frustrated. I want my little guy to get better, fast. I see his little pals from our NCT group moving from one or two cubes of babyfood, to chunks of mushed banana, to ham or cheese sandwiches, while my little one is still battling with me over a few spoonfuls of baby porridge.

I think: he should be moving on now. His oesophagus should be learning how to push down instead of up. He should be eating lumps, grabbing food and shoving it in his mouth, losing interest in breastfeeding. Beneath these thoughts is an image of those other babies, eating and growing, overtaking him, turning into toddlers while he stays behind.

And then the other day on Twitter I found this picture. It's a mockup of an oesophageal fistula and atresia repaired which has been beautifully - OK, grimly - recreated using pig bits. Thanks to surgeon @ffolliet for the tweet.

The tube on the right is the trachea, with stitches in it where the fistula has been removed (I think it's cut off at the bottom just because it's a mockup - surgeons please correct me if I'm wrong.) The tube on the left is the oesophagus. Look how incredibly tiny, how incredibly stretched that tube is. To be precise, as @ffolliet puts it, "The anastomosis is about 6 joined to 2mm."

And somehow, eventually my little boy will use that to swallow food. It's already expanded and grown with him, it will continue to grow. But it's hardly surprising that he's taking his sweet time. I've posted this picture here so I can look at it and remind myself how far he's come.

Sun, sea and sick

Our first ever holiday with the baby - visiting family and friends in Italy - and what an amazing little traveller he is. Despite the fact it took us about 14 hours to get to our destination the little guy took it all with an even temper and even the occasional smile.

He greeted everyone with a happy smile, squealed with delight as we walked around medieval villages with him strapped in his Bjorn and splashed happily in his bath-with-a-view on our balcony.

However, during this week he managed to vomit in the following places:

The airline bag check queue
Over my cousin
Over my aunt
Over my other cousin
On a restaurant manager who was holding him so we could eat something.
On the hire car carseat (car seats are the worst possible thing to vomit on as removing the cover is an epic task. Confession here: we sponged it down lightly and dried it in the sun. The car reeked for the rest of the week, but we're kind of immune to it now.)

Top tip for travelling with a tof baby: ALWAYS GET ACCOMMODATION WITH A WASHING MACHINE. I seriously don't know what we would have done without it.

This fiesta of chunder would have been fine, if he'd actually been eating - but he wasn't.

As the week went on the amount of baby food he would take went from "a little bit at breakfast plus some corn snacks" to "nil by spoon". We decided he didn't like the Italian baby food (liquidised horsemeat anyone?) but it was more than that. Mealtimes were becoming stressful for him, he was actively hating food.

More than once, I had to turn away from him and have a bit of a silent sob. I pictured the surgeons giving him a gastrostomy or drip feeding him just to get his weight up. I was afraid, and of course that fear was making its way down my arm, into the spoon and into his head too.

Towards the end of the week, a glimmer of hope. His dad was eating a ripe, juicy peach when the little lad stretched up and planted his face into it. With nothing to lose (as it had already been lost about an hour before, all over the living room floor) we let him chomp away, raking at the flesh with his gums and two little teeth.

It stayed down!

At lunchtime I tore open my tortelli and fed him morsels of spinach and ricotta cheese. It stayed down too!

In the evening, we went to my cousin's for dinner and while I tucked into the spinach and ricotta tortelli they'd made for me (I know, I didn't say anything) the little guy ate some more ricotta, some more peach, even a few miniscule slivers of ham and miraculously we were able to get a few spoons of ice cream into him. He was happy, he was laughing and licking his lips.

I know enough now not to think "we've turned a corner, things will be fine from now on" but at least I know he's not a gastrostomy case yet. He can enjoy food, and someday, he will.

Hello again, Square One

It's been three months since we started weaning. I get up every morning and make exactly  the same amount of porridge I made on Week One. If I'm lucky, he'll eat about half of it.

Lunchtime - two or three ice cubes of butnip (butternut and parsnip) or sweet potato and something. If I'm lucky he'll eat about four spoonfuls before going onto his sweet.

If I'm lucky, he'll eat his sweet.

At dinner time, I'm lucky if he eats anything at all.

He has started crying at the sight of a spoon, and blowing raspberries the instant it comes near his mouth. The only thing he hates more than a spoon is a sippy cup filled with that revolting poison, water. Last week he nearly ended up in hospital with dehydration.

After that, his already tiny interest in food shrank to almost nothing.

I call the dietician, tell her I don't want him ending up hating food. She says I'm not over-reacting, I'm right to worry, which makes me feel better and worse at the same time. She's going to refer him to a speech and language therapist.

On the Tofs Facebook group there are women whose children are so averse to food it takes hours of persuading to get them to eat one Rice Krispie. Please don't let him end up like that...

The green menace

Avocado makes great baby food. It's high in fat, bursting with vitaminy goodness and incredibly easy to mush up. We're big on avocados in our house, I live with a guacamole addict and I'm pretty keen on them myself. So I was looking forward to introducing our little toflet to this new eating experience.

Sure enough, as soon as I popped some in his mouth he gave me a big smile and opened his trap for a bigger spoonful. There's no feeling more rewarding and wonderful than that. I kept shovelling.

Until four spoonfuls in, he retched, lent forward and deposited a mucusy parcel of avocado on the tray in front of him. Poor little chap looked at me all bemused and opened his mouth for more avocado. I put some in, it came straight back out again.

I figured maybe I hadn't mashed it up enough, as I'd only used a fork. So next time we whizzed it up really finely and added a little water to thin it out a little. Again smiles, again open mouth - again sick.

So avocado has gone from being the weaning mother's best friend to public enemy number one - a green slimy agent of destruction. It's going to be a long time before this little guy gets to eat Mexican food.

Cookin' up a mush storm

 Time to introduce the little guy to some different flavours. Overcoming my strong dislike of peppers - yes, I know that's freaky but there you are - I decided to make a lovely red pepper mush. Two reasons for this. Firstly, according to the evidence (chat on the tof Facebook group and some throwaway comment from my consultant) tof kids like strong flavours.

Secondly a mother at the under ones group had suggested ages ago that I gave him sticks of red pepper to suck "they like the taste and can't bite it," she said. "So he won't choke." Of course the first thing he did was bite it and nearly choke, but he loved the flavour so much he cried when I took the stick away.

So I lovingly grilled a red pepper and carefully scraped off the skin. Then I tried to run the remaining bits of flesh through the mouli-legumes without much success. I scraped what was left out and then tried to whizz it with the hand blender. Unfortunately there wasn't enough for the blender to get a proper purchase, so I had to squish it through a sieve to get it properly smooth.

At the end of the process I had this much washing up:

And this much red pepper mush.

Guess what - I'm still not that fond of red peppers.

Cooking with Annabel

So, having given up on baby led weaning I took myself down to the library and brought home these Annabel Karmel books. Spent the afternoon cooking up a storm. The little dude is making things harder by deciding that the sound of the blender is torture to him, so I can only mush things down while he's safely asleep upstairs. But fingers crossed there'll be some flavours he likes among this lot...

The carrot stick method

Talk to any dietician, most health visitors, nutritionists and nurses and they'll want to sign you up to baby led weaning - or Baby Edwina as one of my friends insists on calling it. It makes perfect sense - for too long we've been shoving spoons in babies' mouths without giving them a choice in the matter. I mean, as the dietitian said to me, how would you like it?

"Cook a few different things," she said. "Soft boil some carrot sticks, broccoli florets things like that. Lay them out in front of him, let him pick and choose. Let him feel the texture, put his own fingers in his mouth to discover the taste. Let the baby lead."

It sounded so appealing, so free and easy. No tension at mealtimes, no persuading him to eat his greens - he'd learn to love broccoli. In fact, he'd teach himself to love it. The problem was that I couldn't give him anything at all with lumps in. Just three months before he'd had a dilatation - where they use a little balloon to stretch the scar tissue in his oesophagus in order to allow more food down. Fully stretched the gap measured 8mm. That's not going to fit many carrot sticks.

"Well," the dietician said, "mash the food up, but do the same. Put a little bit on his lips with your finger. Let him play with it."

So I mashed up some sweet potato and placed it in front of him, in one of those bowls with suckers underneath so he wouldn't just throw it on the floor.

He threw it on the floor.

I gave him some more and he squished his hands in it. He smeared it in his hair, the high chair, the walls. He threw gobbets of it all over me. In short, it went everywhere but his mouth.

I dabbed some on his lips. He ignored it.

Everything he picks up - from rattles to cuddly toys to bits of wood in the garden - goes straight in his mouth. Everything that is, but food.

I shoved a spoon in his mouth. Some went in. I beat myself up about it for a bit, then I gave him some more.

If only this was a blog about the best places for toffs to eat.

It isn't. It's about my gorgeous ball of energy of a son, and my ongoing quest to get him to eat.

The little guy was born in Autumn 2013 with something called tracheo-oesphageal fistula and oesophageal atresia - a huge mouthful of a condition, which is ironic really because it means is he was born unable to swallow.

The technical bit
Essentially he had a gap in his oesophagus and a small tube joining the top part his opesophagus and his trachea. Surgery on day two joined up the two tiny parts and got rid of the extra pipe, but life is still complicated for a tof child. They get reflux - it has to be said some of the vomiting is quite spectacular. They have a distinctive 'tof cough' that provokes stares from strangers in the street. And then there's the swallowing problems.

The part of his gullet that the doctor stitched together is narrower than the rest, because of scar tissue. And because the top and bottom  parts have been joined together artificially, the nerve endings aren't connected so sometimes the food gets pushed down, sometimes it gets pushed up, and sometimes it just queues up, unsure of what to do.

The first few weeks of his life were terrifyingly stressful but he soon settled down to happy breastfeeding. When weaning started, it became a whole different ball game. So I thought I'd start this blog to share my ups and downs with other tof parents out there, to vent when things get frustrating and - when things go well - to brag in a smug parent kind of a way. I'm trying not to include too many pictures of my lovely little chap, simply because I want him to have his privacy in years to come.

I apologise if some of the medical info here is a bit shonky. There's much better information about tof here written by people who know a heck of a lot more than me, and there is a lively and brilliant Facebook page for tof parents which provides extra support.

Extra note: If you're American it's called TEF/EA. Same condition, much more sensible spelling.