G-tube 6 weeks on

This *points up* makes me very happy.

Now, just ignore a) the mess b) the fact my child is only half dressed at gone noon and c) the fact she is covered in paint (one of those days when you have to pick your battles. The bath can wash it off later).

That is a child who has suffered terrible oral aversion for eighteen months and as a result is now tube fed. Now obviously, she did not eat the whole hunk of bread. In fact, I think the area consumed amounted to about the size of my little finger nail (and I have tiny hands) but the point is she is going for it.

We have had the g-tube for about six weeks now. I can't believe it is only that long; it feels as if we have had it far longer. I think by the time we had it, Wriggles so badly needed it, that it fitted in perfectly because there was no other option such was the struggle of feeding, gagging and vomiting. The first week was a shock to the system. I knew how much we needed it , knew how much better it would be than the NG we had been making for with for a few weeks, but I wasn't ready for how taken aback I was by the sight of it. Something artificial and permanent sticking out of your child's unblemished perfect skin is a shock. Even if you know how necessary it is, it still got me. Let alone her. I really struggled with how to communicate to a small child how she could be put to sleep, then back up in pain with a lump of plastic sticking out of her stomach and at that point, an ostomy bag. The bag went, feeds were cautiously resumed and we got back home. After a few days of feeling sorry for ourselves, we picked back up. That is to say, Wriggles picked up; she clearly couldn't care less and her attitude gave me a jolly good kicking. If a not-quite-two-year-old could cope with this, then her twenty-something mother was bloody well going to join in. Of course it isn't that simple-as a mother and an adult I am effectively "feeling for two" the emotions, the presumptions, the hopes and fears and everything that is attached to coming to terms with the fact that normality has flown out the window.

We have had some teething troubles with the tube; two infections needing antibiotics and dressings, and hypergranulation tissue making an unwanted appearance. Fingers crossed, it has now all settled down and things are pretty good. I have lost any notion of caring and have primed feeding sets, vented, flushed and hooked everything up on public transport, in lifts, in H&M, in the park, coffee shops, baby groups and in an art gallery. We have got some funny looks and stares out of curiousity but have not yet had to deal with any questions which is a relief.

When the tube was placed, we were still very much in a not-eating cycle. Wriggles is prone to being a little more receptive and trying some limited foods for a few weeks, then frequently going for months with complete refusal to take anything by mouth, touch food or acknowledge anyone eating. Even if she is not all-out refusing, she will take miniscule amounts of familiar food such as a handful of crisps a day. Hardly sustaining! Just over a week ago, we started a period of trying food again. I had forgotten how intense the heady bliss is when your non-eating child willingly takes something. When she reached out for something I nearly fell off my chair and had to hold back tears of relief. Since then, I have tried to capitalise on her curiosity especially in the finger food department and in the last week we had tried:

• Mummy's chocolate brownie
• cake crumbs
• bread (including toast)
• rice cakes, particularly bright yellow "cheese" flavoured ones and salt & vinegar
• pizza
• gingerbread
• hand cooked crisps (not by me, by M&S). Worcester sauce got the thumbs up, parsnip did not
• scones

In the last few days, she has also decided to let me spoon feed her limited things (yoghurt, mango, raspberry, banana or blueberry puree) too which is brilliant. Whilst I am over the moon about independant eating with finger foods and expanding that area, I don't want to take away from her ace progress but I will stress when I say "eat" it is far more from a sensory and curiosity point of view than a nutritional or otherwise perspective. The amounts that are chewed, and not always swallowed, are very small and are far more about practising her oral skills. Friends who have seen her put food to mouth simply do not understand the problem. The "problem" is that she might only put one thing to mouth per week if that, and there is no guarantee she will actually masticate, swallow and digest it. Even if she does, we are a long way from her actually eating orally any calories, as the time it takes normally expends more calories than it creates. So if I was to be super-keen on emphasising the calorie side of things (which for the record, I am not. It is very early days, and thanks to the tube we have a nutritionally complete formula which provides all her calorific needs to maintain and increase weight to be able to facilitate hopefully increasing food intake eventually) then the only way to do so would be spoon-feeding purees which she can take a reasonable volume of, for someone not used to eating. On a good day, she can take about 60g (half a baby pouch or jar or a small fromage frais pot) comfortably before she looses interest or gets upset. On a mind-blowingly good day, she can take just under 100g but these are rare and to be celebrated in the extreme! Those sort of amounts and the likelihood of matching those calories are at this point only the stuff of dreams when it comes to finger food or self feeding. But this is why I now love the tube: the pressure is off and it doesn't matter. We have time. We can do it at her pace, and if that takes an age it is ok.

For the time being, we also seem to have her reflux under control which presumably will only help her willingness to try food. She also seems more comfortable in herself and my washing machine is enjoying a longed for break from twice-daily service. I have now been doing this long enough to realise that this isn't a "fix". Refusal and the return of more aggressive reflux may be around the corner. It's sad but true, and I have to acknowledge this. This isn't a defeatist or pessimistic viewpoint although it might seem this way. After the road we have been on with feeding, reflux and tubes to date, I know we are far from the end or even the middle. And it pays to be realistic. It pays to set new goals or everyone becomes upset and frustrated. So if we get through more than one fromage frais in a week and I get my dinner played about with by someone that isn't me, then we're winning. It may not seem much, but to us it's huge. It has taken me a long time to accept this and adapt to realising my baby girl is not as straightforward as I might like but not any the worse for it!

Vegetable Glue

I cannot really speak for meal times and fussy eaters, as our path with weaning and consequently feeding has strayed from the norm and into an area regulated and plotted by medical professionals. However, I do remember growing up with my sister who was a supremely fussy eater (she accused me of being a traitor when she saw me eating broccoli. She was at least 14 at the time...) and I suspect that my little baby is fast becoming a contrary toddler so I thought I had better brush up on some literature to arm myself with knowledge for the next stage of development. One book I discovered whilst working at Seven Stories, the centre for Children's Books and remembered fondly ever since was Vegetable Glue by Susan Chandler and illustrated by Elena Odriozola. It always raised a giggle from children and story times and an understanding eye roll from many parents around the room.

Vegetable Glue is a cautionary tale from a little girl who only eats cake. The problem with this is that vegetable glue keeps all your body parts stuck on* and makes sure they do not fall off. Should your head accidentally take a tumble, you would need to flag down a wise granny (or possibly greengrocer) and beg for some magical glue to repair the damage.What's that; you've never seen someones arm spontaneously fall off in the playground? Ahhh, well they must have all eaten up their greens then to keep their arms and legs stuck firmly to their bodies. You don't need to guzzle down your body weight in peas and carrots to create vegetable glue, a few bits from your plate will suffice (if you are unsure, ask your mum or dad. They generally seem quite knowledgeable in the vegetable consumption arena). And I don't know about you, but if I knew my head was likely to fall off in the middle of going down the slide then I think I would stay indoors too. Terribly embarrassing, this body falling apart business.

"You can see for yourself,

That something's not right,

People don't fall apart.

It's just not polite.

I have to keep with me,

A big tub of glue,

To stick bits back on,

To make good as new."

So how then, do we avoid this? Luckily, the answer is here and written beautifully in rhyme. The text is large for new or budding readers (or tired parents) and accompanied by gorgeous watercolour illustrations on every page.

"It's not in the shops and it's not on the telly, beacuse vegetable glue is in everyone's belly!

But I was quite silly and made a mistake.

I wouldn't eat cabbage, or turnips or beans; I didn't like carrots, I didn't like greens.

I didn't eat sprouts and now I've no special glue. No goodness inside me, like other kids do.

While others are playing, I can't even cough. If I sneeze or I burp then something falls off."

By this point, I was already sold on the book when I first read it. It's marvellously silly as well as being full of subliminal common sense, but just in case your child might not be convinced, there is an almost obligatory rude picture for all the back row to collapse in giggles....

Although she is too young to sit through the whole story or understand fully the content, Wriggles is more than happy to flick through the pictures and was amused by the rhyming text. It also lends itself to silly noises and learning body parts if you feel like being very involved and interactive.

I don't know about you, but I will be having mainly vegetables for tea tonight. With a side helping of more vegetables. You can't be too careful....

*not scientifically proven but backed up by 99% of desperate parents especially at dinner times

Recipe for Teatime

Equipment needed:

1 child. I am using an orally aversive one just to be difficult. This is not necessary, especially if you have a nervous disposition

1 highchair or sitting device, preferably with a table

100000 spoons or thereabouts

A wipe clean floor. Start with it super-clean

Ingredients:

1-2 small pots of fromage frais or similar

approx 40g fruit puree

2 cheesey biscuits (can be replaced with other dry food like crackers, breadstick, ricecake)

A soft texture like strips of bread or cake

A few soliders of buttered toast/hot cross bun/tea cake/use your imagination

Some slices of fruit/avocado/steamed or roasted vegetables

Several large dollops of patience, and then a bit more for good luck

Instructions:

1. Seat child in the chair. Strap said child in: they will try to escape.
2. Lay loose food items out on tray of highchair. 
3. Let the child browse and pick them up. Many will fly over the sides. Try to intercept as many as possible. A clean floor is vital. If you are unfortunate enough to live in a carpeted kitchen, put down an old sheet, newspaper or similar NOW.
4. Encourage child to touch items they are blatantly ignoring. 'Share' in the meal. Better still, have a similar one at the same time or use the time for a buffet style snack.
5. If child attempts to feed you (hint: thrusting dribbly half-chewed item of food at your nose is code for sharing) take some nibbles and then try and return the favour. Try not to be mortally offended if they refuse.
6. Once you can see teeth marks in food items and there is now more on the floor or in the stomach of the child than on the table, unleash your spoon collection.
7. Take top off fromage frais pot
8. Administer small spoonfuls. Assuming this goes well, carry on. Child may at this point start trying to grab the spoon. Unveil your patience and allow this. Replace with one of your many spare spoons. Repeat as necessary.
9. Once you have reached approximately half way through the small pot, start to add some smooth fruit puree. Try to get a mix of half and half on the spoon. Feed child as normal.
10. If child does not bat an eyelid or scream the house down, repeat for a few steps.
11. If this is still going well, steadily add fruit puree.
12. ADVANCED MOVE (optional): crack onto the second fromage frais with fruit combo. Use your intuition on this.
13. When child begins to cry, hide under their arms or bite the sides of the highchair, it is time to stop. This is different from avoidance tactics like staring into space and squwarking.