Feeding Tube Awareness Week: day one, our story

Our first experience of tube feeding was like most preemies, in NICU. We had to wait weeks for Wriggles to be at the gestational age whereby she could suck, swallow and breathe at once and even then it took weeks to build up her oral feeding, ml by ml as she tired easily. We graduated without the tube though and settled down to a turbulent first year of life with the added bonus of frequent and projectile reflux. After her first foray into PICU (Paediatric Intensive Care) shortly after weaning had commenced with relative success, Wriggles lost interest in solids. She didn't just loose interest in it, she went berserk. At around 8 months old, I could not offer her food to eat, touch or play with, I could not put either empty or full utensils near her and I could not eat near her myself as she would scream and scream as if in terror. I was loosing my mind with worrying-my only consolation was that our childminder reported the same difficulties in trying to feed her also, so even on the darkest days I rationally knew it was probably not entirely me doing something wrong. By her first birthday, Wriggles would very occasionally and with much reluctance take small amounts of yogurt off a spoon and her bottles. Her coordination was still off to self-feed and at this point she was still not sitting which didn't help brilliantly either. "Fuss pot" didn't even begin to describe her attitude towards bottles either and she self-weaned off using a pacifiers as dummies began to make her gag and subsequently vomit. During the times we were home between hospital admissions, my flat was a homage to washing vomit out of every conceivable item of clothing or furnishing and when she went to bed I would sit and cry. Shortly after she turned one, we had a fairly serious hospital admission. It was agreed her feeding difficulties were getting out of hand and there seemed to be a very viable link to her repeated chest infections. She would go home with an NG tube.

We stayed in hospital for nearly 3 weeks whilst they ran some tests, she kicked the infection (and required oxygen) and I was trained how to tube feed. On the last day, a consultant decided to scrap the plan and re-try forcing the issue with oral feeding, different formula and a new course of medication aimed at controlling the reflux which was still at large. We were promised community help and sent home with instructions to keep stuffing her as much as she would take. The "help" was patchy and it continued to be a struggle. We tried several formulas to try and get on top of weight gain and got the reflux to a manageable level. Solids however were another issue. Over the next 9 months I tried so many things to move things along. They didn't budge. She would drink nothing except from milk out of a bottle with a specific teat and gradually she began to drop the levels she was drinking. Whilst I never had fears about hydration, her weight was another story and it became obvious that whilst the milk might be nutritionally complete, she just couldn't or wouldn't take enough of it to satisfy her body.

Looking back through photographs, I do sometimes wonder if I have got our story quite right. So many pictures are Wriggles with food; Wriggles painting herself or the chair with food; Wriggles in a cafe... The reality of course is that these relatively happier or chilled out times were SUCH high points that of course I whipped the camera out. Each time I had no idea if it was a fluke and if it would be months or ever that the time in question was to be repeated and I wanted hard evidence it could happen to help me on the darker days when I felt like I had failed my baby and wonder if we would ever get the "normal" experiences that are associated with feeding.

A (very rare) eureka moment:

This isn't a great picture, but Wriggles was getting skinner and skinnier. Prior to getting the tube for good, she began falling gradually then speedily through the centiles on the all hallowed growth chart. Even allowing for corrected age and periods of illness, she had gone from being your average 50th centile kiddo to sitting at the bottom and not looking like she was going to pick up any time soon. You could see her ribs and her arms were like twiglets. The last time we saw her dietitian before the admission, when she picked her up you could see her face fall. She said there and then "uh-oh"; I later found out she immediately had emailed our paediatrician and advised at the very least NG top ups. Fate, or rather Wriggles and her preemie lungs had other ideas though and we soon were on an NHS mini break again for most of August 2012.

 Then this happened:

Wriggles was not happy about being NG fed. I was not happy about her being NG fed. The community nurses who had to quite literally sit on her to re-pass the NG tubes she refluxed up daily were not happy about her being NG fed. But goodness was I relieved we at last had a plan. I knew instantly that tube feeding was the right thing to do, because when the consultant told me that we would be going home with one and that this was going to be our new normal for the time being at least, all I felt was sheer relief washing over me. I might not have jumped for joy but I knew we were at the end of the line: we had tried, god almighty had we tried, but things were not getting better and we were getting into riskier and riskier territory playing Russian roulette with Wriggles' health and that is not on. Tube feeding is not an easy option, it is a last resort. But when you get to that place, having a tube is like being in Monopoly and getting an out of jail card.

Luckily everyone decided that an NG was not a long-term solution and so we got slotted into surgery pretty quickly for a PEG (G tube)...

...which made things much easier! Whilst surgery is never easy and I found the initial week a struggle, it was the best thing all round. When Wriggles was first in recovery coming round after the anaesthetic and screaming the place down (whilst the nurse was reeling off all the pain relief she had already had which was not touching the sides...) and I saw the PEG dangling out of her beautiful previously unblemished stomach, I felt sick at what I had consented to have done. However, once the pain had settled down for her it was obvious that the new chapter we had started was a good 'un. Like NG feeding, we had to settle down into a pattern of working out what was the best rate for her. At first she did not tolerate bolus (quick) feeds well and for quite a while we relied on the pump., Her volume tolerance, even now at 3 years old, has always been on the low side and I still have to rely on gut (ha!) instinct, common sense and a quick assessment to avoid my carpet getting covered in regurgitated feed.

Last summer we swapped the PEG for an AMT mini button which I now love. Wriggles calls the extension her "tail" and most of the time is pretty nonplussed about being tube fed. The truth is, she probably can't recall any other way. She never ate enough solids, if any at all, for them to provide even a contribution to calories and nutrition to fill her up and her drinking was tailing off and warning signs of aspiration into her lungs were sounding like a klaxon so there was not a great deal of choice. We still have a long way to go with introducing consistent feeding and upping volume anywhere beyond "tasters" and have only just begun to reintroduce fluids. But she is healthy and the main thing is that she is getting the nutrition she needs, and also the medications she requires. Since we began tube feeding we have ditched the complete high calorie formula she was fed round the clock and switched to a blenderized diet. Given her lack of eating, I wasn't 100% about how her body would handle solids but after a very gradual changeover she has been fine with just about everything as long as the volume isn't too much and it isn't overly fatty. She how has 3-4 boluses of pureed food down the button at conventional meal times and fluid boluses in between; anything orally is a bonus and she will eat crumbs of cheese scones, toast, Pringles (my nemesis, I detest them now), the arms and legs of gingerbread men and nibbles of sausages. I still can't tell you exactly why she didn't before and still doesn't like eating or why we still get into cycles of all out refusal. The tube is as much here to stay as it was when it was first placed, but that isn't to say it will be forever.

This week is Feeding Tube Awareness Week, with the brilliant theme of "nothing will hold us back". Getting a tube can initially throw a proverbial spanner in the works, but once you find your groove it seeps into your routine until it is another way of feeding. We might still be too new to add the "just another way of feeding"; it is after all a very emotive and physically obvious difference. But feeding tubes are necessary for a huge variety of reasons. They may not look like it, but for many children and adults are not just life saving or nutrition related devices, but are compassionate. Getting a feeding tube has allowed my Wriggles to become to self-assured, mischievous and energetic little person she is today and that is why I am passionate about this week.

Quavergate

So we're coming to the end of the first week on our whizzy new high calorie potion, Paediasure Plus. If I can find the strength enthusiam will time, then I may take Wriggles to the hallowed Baby Clinic for a weigh-in next Tuesday to see if it may be working. Then again I may not seeing as she spent the best part of a week drinking next to nothing, let alone eating. And the eating bit is not yet back on track. We are back to what I refer to (mainly to myself; I am getting quite used to having inner monologues) as Quavergate.

Wriggles really likes Quavers.

(I have developed a new tolerance for Quavers as a result.)

It helps if they are proper Quavers too, rather than own brand Cheesy Curls or whatnot.

Quavers first came into our life as one of the many helpful suggestions from other parents when no one medical was taking us very seriously that at nearly a year old, my child was still eating nothing and have seemingly developed cutlery-phobia even if I was the one using them for me. I appealed to the wise people on the Bliss message board community and received some very reassuring responses and suggestions of things to try. Melt-in-the-mouth type snacks, whether your earth-mother-friendly Organix type no-salt-sugar-additives-flavour-guilt-free puffed carrot sticks, or the more common Quaver, Skips or Wotsit were suggested to help her oral skills and give her something to hold, if she so wished. She didn't. There was one blissful moment of curiosity just before her first birthday, never to be repeated for months. I didn't forget though, and made sure my cupboards resembled a well-stocked Asda just in case she ever felt tempted by anything that wasn't out of a bottle.

Around a year corrected, teething was immensely helpful. I don't think you hear that phrase very often. I do believe though, that as well as general development, accumulating trust, etc, that the desire to gnaw generally anything not nailed down to relieve her poor gums, really did help. Because suddenly the very small circle of things that she would mouth (her fingers, my fingers, the tip of my nose, her dummy, Christmas Hedgehog's nose, Mouse, her favourite rattle but not any other rattle, rattly Frog's leg) expanded to include other rattles, books, toes, blocks, the edge of a cushion, paper, cardboard, bath toys and BREADSTICKS. Hallelujah! Although she didn't swallow or 'eat' them, she did chew on them which marked our first real breakthrough in anything not related to fromage frais.

Then, at around 13 and a bit months corrected we started going to a hydrotherapy group for early years run by our physio and some of her colleagues in speech therapy, social work and education. After a hydrotherapy session in the pool, there was snack time. They put out some very baby un-friendly (Annabel Karmel would recoil in shock) such as Quavers, pink wafers and cake as well as banana and fromage frais pots. These foods were specially picked as they are particularly good for developing oral motor skills, especially as every child attending has some level of feeding problems. Week by week, Wriggles slowly consented to touching, then holding, then licking and then tasting. It wasn't until about the last week at around 15 months corrected that she ate one, which was massive cause for celebration. SALT were very pleased too, as it proved that she could develop the motor skills which boded well for the future.

For a while she ate nothing but Quavers.

Considering she ate very little anyway and still battled with reflux, this wasn't super news.

I was over the moon she was gaining in curiosity about foods (well, one food) and branching out, but was a little concerned that Quavers contain very little nutritional value or many calories. Weeks dragged on. It felt like years. If I withheld the Quavers, she ate nothing. Not even a fail-safe fromage frais. Bitterly I recalled the SALT wittering on "Oh try Quavers, they're great at developing feeding skills." I'll stuff you full of Quavers, you silly old bat, I thought. Quavergate was in full swing.

Of course, in true baby style, just when I was teetering on the edge of complete despair, considering sending hate mail to Walkers and wondering if I would ever be able to start a meal without a little yellow foil bag, then she suddenly ate a whole petit filous, tried some fruit puree, wolfed down some custard and sucked my hot cross bun (not all at once. That is the stuff of dreams, dear reader).

I know now that Quavergate #2 is a shadow of it's former hold. She is still recovering after feeling grim; today is after all the first day in a week where using the inhaler hasn't been a necessity. We all, adults and children alike, feel horrid after being poorly and can eat atrociously. If Quavers are her comfort food and give her a sense of Independence, who am I to argue? They are after all, 88 calories per bag versus 64 calories of the Organix Goodies range. Those 24 calories sound ridiculous, but in our quest to stay on the same line on the dratted growth chart, I will take those 24 thank you very much. I might even have them with added Quavers.

Tears

6:18pm

It's teatime and there are tears. 

This isn't unusual. Wriggles' aversion to feeding has often distressed her to the point of tears in the past. I have long learnt that if this reaction is even hinted at, to chalk it up to experience and leave it for another go later. Somethings are just not worth it if that are that bad.

What is unusual is that today the tears are from me: I am crying.

But not from frustration.

Wriggles has just put a vegetable finger to her mouth.

No wait, she has put it in her mouth.

And...

I hold my breath, almost too hesitant to get my hopes up.

...bitten, chewed and swallowed! 

Tentatively, over about an half an hour, she returned again and again to nibble away at the vegetable finger. What was even more incredible than this* was the fact that when she couldn't cope with a texture, like a whole piece of sweetcorn, rather than gag and vomit like she has always done, she moved it around her mouth until she could spit it out. I was amazed at this sudden leap in process than I have been waiting for for what is now over a year. To actually willingly handle food, put it to her face, try some, repeatedly try it and use her oral motor skills to break it down... it is so simple and what we take for granted, but it is such PROGRESS and even thinking about it now brings a lump of pride to my throat. 

The past year has been a rollercoaster and has taught me a lot in patience and acceptance and I must admit, there were times like in recurrent weeks whereby she would not even go near food, where I fear it would never happen and we would succumb to tube feeding. I have a small section of baby and children books on my bookshelf that have taunted me with their weaning guides and food ideas. Before Wriggles came home and long before weaning, I devoured them soaking up ideas and formulating my own plans. I talked to the neonatal nurses about weaning premature babies and read the Bliss literature. I couldn't wait and had a box of food items and accessories before she even reached term. I did not forsee  a fraught period whereby she wouldn't even entertain being near food or touch cutlery; I didn't know the work that would be to break down her fear or distate for the sensory textures. Slowly, we have introduced milestone after milestone and now, a taste and management of "real food" is the icing on a cake. I'm not expecting miracles; it might not even be the beginning of the end of this time, but I am so pleased for her.

 I am so proud of my clever baby girl.

"What's all the fuss?"

*if you have never read anything here before, Wriggles has struggled with oral aversion and building up trust never mind a variety has been a very long slow process. In over a year, we are now at an albeit limited, "stage two" of the weaning process!

Highchair

A year ago we got our highchair. Like much else about Wriggles, prematurely! She was being weaned (if you can call it that, not actually eating any solid food) but even with the insert, was very small and her chin was practically resting on the table. She also couldn't sit up by herself and wouldn't for around 6 months more. The only reason I bought it then was that it was reduced at the time and my parents were up visiting to help carry it back from the shop. We duly placed Wriggles in it for a photo opportunity and after that, it stayed rather unused taking up a corner of the kitchen for months to come. She wasn't very impressed at all and it seldom got used as anything further than somewhere for dumping things organising post.

Wriggles was still being (attempted) fed in the bouncy chair and Bumbo, which I cannot praise enough. We were kindly loaned it by the physiotherapy team to help Wriggles' core muscles, but it really came into it's own for so much more. She seemed frightened of the highchair for a very long time, but trusted the Bumbo which she was always more than happy to sit in. I think it made her feel more independent and like she could achieve more. It also freed up her hands rather than trying to balance on the floor trying to support her weight sitting. I did try to use the highchair briefly, not for food but to play in. Partly it was useful if I needed to have both hands free for a short period, and partly I wanted her to relax in it and learn to trust it. She was so swamped in it, there were often about three separate rolled up towels supporting her as well as a booster insert. Slowly, she began to hate it a bit less and discovered the fantastic game of "chuck it over the sides/Mummy pick it up". She was definitely at least one before it got used even semi-regularly for meal times, as other times she was far happier sat in the Bumbo or on my lap. Given that meal times were not her favourite bit of the day, the last thing I wanted to do was make her more fraught by the choice of seat.  


Although progress isn't fast, Wriggles really is making strides with feeding and also accepting more textures and touch. The highchair has now come into it's own, especially as the Bumbo is no longer safe now she is mobile, and the tray is ideal for presenting a buffet of leftovers and finger foods, and if she wants to really get involved and explore the food, then it is wipe-clean (as is she!). Now, we have lunch and dinner in the highchair and she happily will pick through a selection of things like cheese biscuits and Cheerios as well as being spoon-fed. It also makes a good hiding place, standing aide and toy basket when not in use. She still is rather swamped by it...

Happy birthday, highchair.

Gingerbread

A year ago, I would not have believed this picture. A year ago we were in the hell of trying to persuade an orally aversive child to eat before I realised it was oral aversion. Wriggles is still not a brilliant eater and has made what seems minimal progress but to me and to the medical people around her is phenomenal. And the important thing is that we have made progress, no matter how small or large. Very slowly but surely, the list of foods is inching longer...

At 20 months old, or 17 and a half corrected Wriggles can:

*eat fromage frais and similar textures like set custard or thick yoghurt

*she can manage small, dry foods in her own time, like Quavers, crackers or biscuit

*she will sometimes decide to try or at least touch what I am having. So far the only progress made on this front of going on to eat this is one chip at the childminder's but I live in hope!

*eat most fruit puree and small amounts of vegetable puree if it is mixed with fruit puree or yoghurt

She is even beginning to show preferences, such as apricot yoghurt is the best flavour fromage frais and that cheese flavoured things are yummy. Above, she is gnawing on her new favouite: gingerbread men! She can manage about half of one leg at the moment so I get the rest-not complaining there!

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. 

Living with Oral Aversion

Oral aversion is hard. Really hard. It strips away one of the most natural things a parent does for and subsequently teaches their child: to eat.

Oral aversion is defined as "reluctance or refusal to eat". It can arise from a number of sources, and often from more than one. It responds well to therapy but does so at snails pace. The reluctance or refusal is not a generic toddler phase of bad manners or defiance; it is linked with oral trauma and thus is an intense experience for the child that literally stops them from eating, swallowing, trying things or allowing textures nearby the face. It must be very frustrating if your child only eats Quavers, cucumber sandwiches and Kit Kats but that is not quite oral aversion.

This post by Life with Jack sums up perfectly much of how I feel about it. Having not yet encountered someone face to face with this problem, the internet has been a lifeline of information and hope for the future. It has given me reasssurance and I have "spoken" virtually to other parents who have been there, done that and got the sodding t-shirt. This has meant a lot, as it is one of those issues that is hard for some people to truly understand and therefore can be quite isolating. It is easy to say airily "Oh they'll get there in the end" but when your child is only on fluids or is reliant on tube feeding whilst around you others are scoffing three meals a day of a variety of textures and tastes, it can feel like another world. And the reality is that it is not going to change fast or go away over night. It is not solved by intense hunger or withholding "safe" or favoured items.

Hooray

Hooray, a success!

As you may or may not be able to deduce from this here snapshot of my resident pest, she has eaten some food. This may not seem a particularly news-worthy event for a 16 month old.
It is.
I won't go as far to proclaim it is a miracle, but it is not far off.
For reasons knows best to Wriggles, she does not eat.

At least, apart from a handful of coffee shop based exceptions, nothing solid or even petit filous based has passed her lips since mid-December. 

Not that she was really eating before then either.

At 6 months she weaned as any normal baby (I think. I don't have any other baby experience but she seemed to do what most other baffled infants did ie. glower at spoon, spew out baby mush, repeat process for a few days and then wolf down an entire pureed banana) and then The Trouble started. Namely a trip up to Intensive Care with pneumonia, and when we returned to the outside world things were a bit, well, buggered. Initially she ate like a horse for all of errr 3 days. Then overnight it was as if a switch had been flicked: nada.

She would get distressed at the mere sight of cutlery, refused to even look at food, point blank ignored me when I ate, gag like mad even on bottles and would not put anything at all near her mouth apart from her trusted possessions: a bottle, Christmas Hedgehog's nose, dummy, her favourite rattle and my fingers.

The months that followed were trying. For a start we were backwards and forwards to the wards as respiratory infection followed respiratory infection. Inbetween, I tried to re-establish weaning and wax lyrical about the Joys of Food. Not hard; I love eating. I quite like playing with food. I tried every trick in the book and invented some of my own. Every time I thought I'd cracked it (Yes, she WILL lick the spoon at least if Spot the Dog 'feeds' her while I bellow "The Grand Old Duke of York"!) it was a false alarm and like in snakes and ladders we would be back on square one at the bottle of the pile. Eventually she began to hold a spoon if it was empty and play with a bowl. Then she expanded gradually the things she would put near her face and in her mouth. She would sometimes touch food and warily paint both of us in puree and yoghurt. She began to slowly take minuscule amounts of puree and fromage frais and hold small pieces of finger food like biscuits or rice cakes.

Around 14 months we were on a high at two small portions of a 'stage one' fruit puree or yogurt daily and occasional practise-chewing of crackers and breadsticks. I proudly reported that to the dietician in December and of course the next day she stopped eating again and has not resumed yet until today! Please let this not be another fad...

It is hard to suss out. The combined medical opinion is that it is a muddled up combination of "oral trauma" from repeated nasogasteric tube insertions, intubation (ventilation), multiple breathing support occasions which are all centered around the face be it via mask, cannula or tube, amounting to a juvenile 'phobia' or aversion; combined with terrible reflux which took a very long time to be medicated adequately which has likely damaged her oesophagus even if not severely or long-term; an over sensitive gag reflex and immature stomach valve, meaning that sometimes even brushing her lips result in the entire stomach contents of the day landing on your carpet. Well, my carpet; oral sensory issues; possible other sensory dislikes (won't entertain even holding moist-like textures like steamed carrot, fruit, jelly) and as she has become older, general sheer-bloody-mindedness of approaching toddlerhood. Or as the paed says when he is stuck "Could be a prem thing." My instinct is that what was once a genuine real issue with feeding has now morphed into familial behaviour; even if it no longer hurts or distresses her to taste, she imagines it will so won't even try a large amount of the time. Argh!

Except for lunchtime today!!!