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.

Sorry, Wriggles

Some days I long to see you run off as if in flight, with the crowds of other children.

Some days I long to see you slurp up a drink noisily and blow bubbles through straws.

Some days I long to just go out for lunch with you and order something off the menu for you to eat: with pleasure. No syringes.

Some days I long to hear your voice join the little words you are learning.

Most days I feel at peace with how things are and focused on your abilities.

All days I feel so heartbreakingly proud of you (except maybe, when you are badgering me for Maisy Mouse DVD again).

And some days I feel bone-crushing guilt and sadness that I couldn't "fix" things for you.

That I can't wave a magic wand.

I feel angry we have to rely on so many people and are only adding to that team, to help you achieve what comes so naturally to other people.

When you cry during physio stretches, I am crying with you. I've just learnt to have invisible tears.

If I had a magic answer, I promise you I would have used it.

You are so good; so happy really. So full of beans, so scornful of fear.

So why do I feel so sad and guilty that I have somewhere failed you? 

How is it possible to feel so grateful, thankful and elated and simultaneously so muddled, confused and aching for this life you never envisaged to go back to being hidden?

Blended Diet

Wriggles gets near enough 100% of her nutrition and calories from formula; always has done. With a very slight window of exception, most of her life this has been formula carefully considered by paediatricians and medical professionals and one picked to carefully meet specific needs. We have been through a fair few in our time, found some we liked (as much as you can like commercially produced milk derived 'food') and some we really didn't. Picking a good formula was important with the tube. In some ways, it opened things up as dietitians will readily admit some taste vile so there is little help of children taking them and having a tube eliminates taste as an issue. In some ways though it highlights how important getting it right it. There is so little room for error with children, especially those in fragile health. We have been having a year-long dalliance with high calorie formula to meet Wriggles' weight needs and after having worked through much of the Paediasure range, seem to have it right. 

Recently though, I have been reading about blended diet which is much as it says on the tin. Real food, blended to go down the tube. Mostly, I am pretty at peace with Wriggles having formula albeit through a tube sticking out of her tummy-needs must and all that. She grows on formula. She develops on formula. She digests formula. A large part of me is apprehensive to rock the boat. Why change what works? I haven't yet spoken with a dietitian about it, but I suspect they will say the same. Formula comes with statistics. Formula has studies about it. Medical reports, numbers, averages, facts. Formula is easily measured, it is tailored down to the last 0.1ml. It has a neat little box on the label telling you all the information. I just have two little niggles that I want to at least experiment with or really look into:

1. Although medication seems to largely control Wriggles' reflux, it is far from going away and lying dormant for long, and when we do have flare ups they wreak absolute havoc. There are no formal studies about blended diet and reflux, but huge numbers of parent (and increasingly health professional) anecdotes are testimony to the fact that switching to a blended diet instead of formula can really improve on, if not eliminate the worst of reflux. This won't be true for all children and all diagnoses, but it is something I am very curious about. When we are in a good period, things are ok. When we are in a bad period, there is all manner of projectile vomiting, crying, coughing, gagging and there are still fears about aspirating on reflux. A very good reason for wanting it controlled a little more than it is now. I'd say it is about 70% controlled now. Not bad at all, but 30% is still too much for me especially when it involves dragging the respiratory system into review again and frankly, why would any child be motivated to eat when they are being sick?

2. That eating thing. Sometimes I feel it can be all I go on about, but really it is SUCH a big thing. So far, Wriggles shows no motivation for scoffing. None. What if, even partially, feeding her actual food down the tube stimulated something somewhere into encouraging her body to at least try? I'm not talking whole meals, just curiosity, tastes, most importantly a want to eat for herself. Not because I'm trying to bribe her by letting her holding my keys in exchange for licking a spoon but a desire to satiate the tastes, the smells, the textures. A number of parents have reported very favourable turn around in their children's attitudes to food since trying the blended diet. I know at one point, we will have to look at tube weaning. I have spent hours reading up on this to the wee small hours and am so torn by procedures and philosophies on it. Little of it sits entirely comfortably with me, yet. So what if something helped her there by her own accord first? Sometimes I think, well we've nothing to loose. If it doesn't work, it doesn't work. But you don't know without trying.

Really, blended diet should seem the most natural thing in the world. Humans are made to eat food by whatever means, yes? But the opposition towards blended diet is surprising. Few professionals recommend it, fewer support it. Our community nurse recently remarked another patient she sees has tried it; she did say that it was brilliant for reflux but that the parents did it out on a limb without positive backing. Pages could be written for or against. Feeding is such an emotive issue, from a personal, parental or professional point of view. Nutrition is the essentially the building blocks of life for a healthy future, simply put it must be gotten right. But it is also so easy to medicalise and forget the pleasure it brings to the giver and receiver. 

So I have been experimenting. Just a bit. Nothing radical.

I feel so naughty.

I keep expecting a dietitian or doctor to pop up screaming "PUT THAT SYRINGE DOOOOOWN!".

I knew I had become a bit institutionalised by our hospital history but was slightly taken aback.

I have my defence ready. "It's just a bit of porridge, guv." No. "For chrissakes it's just food." "She's my child!!!" "If she ate this with her mouth, you and I would be dancing a jig on the ceiling!" I think I might have over-thought this.

So far, I have only experimented with swapping one daytime bolus feed. I have kept the same calories and as near to the same volume. I haven't tried anything I wouldn't give her orally or any complex flavours. I just want to see how she responds to digesting anything but milk and the odd Quaver. We've only been doing it a week and I'm so far sitting on the fence as to if we carry this on or if we might be some of the lucky ones to reap results. But one thing, I can't begin to tell you the joy, the excitement of mixing porridge, of smelling real fruit, of looking at flavour, colours and smells. It excites me, putting it down the tube. It really makes me happy that it is real. 

It makes me hope that one day I will be making these concoctions not just for a tube and syringe. Maybe I need to get out more, maybe I need to stop looking so far ahead, maybe I need to stop caring about food...but for now, I'm just enjoying feeding my daughter a little more.

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!

Feeding update

Sod's Law dictates that whatever we want within a time frame will of course be denied. Probably to be fulfilled as soon as it is not relevant.

Since our appointment with the dietician and the fact although improving, Wriggles' oral aversion is not disappearing anytime soon, Wriggles has gone from being practically curious about meal times to back to square one: refusal. There I was a month ago, blethering on to lovely Ruth about the amazing progress and how proud I was, to have it all grind to a halt. Although she will consume or at least chew, very small amounts (I'm talking mouthfuls, or pieces the size of my fingernail constituting a "meal") of dry textures like corn and maize snacks or crispbread, these are so low in calories they are in dietary terms counterproductive. I have been frantic in trying to avoid getting a feeding tube but am slowly coming to be at peace with if we end up with one, we end up with one. 

Three weeks of ending up back at square one, encountering all-out refusal of any solids, difficulty feeding milk (our one and only source of calories and nutrition) and being back to all manner of tactics to get out of any feeding has made me feel a broken mama. Against all my wishes and attempts at it being otherwise, feeding in any situation now, including drinking which it never has been, is a battle of stubbornly massive proportions. It was never meant to be like this. I was trying to hard to teach enjoyment and acceptance and the opposite has happened. No 'usual' tricks work, and any former fail-safes have fallen. The progress we made painstakingly had been rapidly backtracked on through a combination of illness, teething, toddlerdom and the horrid beast that is oral aversion. 

Would I be far more patient if I wasn't on a time frame against tube feeding?

Maybe.

Then again, maybe not. I suspect any more patience, any more gaily aborting mealtimes in the face of tears and upset, any more tackling defiance, would only be the work of a saint. And I am not a saint. I, like many others out there, am a humble parent trying to do the best but sometimes that will be called into question.


There are two big things I have been thinking about recently. One, is something a doctor said to be in hospital, and one is a debate which I have read on many feeding blogs and in support and awareness groups.


1. "Is it ever 'right' to use a feeding tube for children?" mused the doctor to his students.

And as he followed up, yes, in many cases. In premature infants before they can suck or swallow and co-ordinate, in sick children who cannot feed, in children who for a vast array of reasons either cannot eat or drink or cannot co-ordinate, those with complex medical needs and those who do not tolerate a variety of feeding. What he was specifically addressing though, was FTT (Failure to Thrive) children. It is a tricky question, and one he admitted he sat on the fence about. Given that food is available, surely a child will not let himself actually starve or dehydrate? Would even the worst feeding disorder be conquered by approaching starvation and malnourishment? And on the other hand, is it more cruel to push a child to those extremities which may prove fruitless? What if by that point, the child's internal sensory and psychological hard wiring was so confused, that the same signals and reflexes did not register? A hard choice and not one to be taken lightly by parents or physicians. 


2. ...which lead on to "is it more cruel in either long or short term to keep pushing food as a primary source, or to rely on an invasive feeding tube to be able to let the child go at his own pace?"

Again, not easy to answer and one that ultimately will differ from each child, each situation, each paediatrician and each family. I have always been of the opinion that feeding tubes are a no-go zone. A last resort. Giving up. And then along came oral aversion, blighting our meal times. We have gone beyond toddler-tactics. Beyond baby book advice. Beyond crafting edible animals and such like out of lunch. Beyond trial and error. Beyond simple solutions. Beyond discipline. We are in a murky territory and more than it pains me to see Wriggles not eat, it pains me to see her unhappy. And sometimes, she is miserable around food. Actually, sometimes? A year ago, I thought I must be doing something wrong. That there must be something to change and it would all suddenly fall into place. It is frustrating, but I now know there is no suddenly. Yes, there are small victories and milestones that feel HUGE, but no sudden snap of the fingers. This is going to take time. More time and more patience that I ever envisaged. I must admit, I have begun to wonder if it is more harmful or hurtful to keep pushing constant feeding on her. When she does feed, it is so slow that it can be easy for one thing to run into the other. The only way to get a decent amount of calories (and nutrients) into her is to ensure she drinks at least 600ml of Paediasure Plus a day. This is no easy task. She struggles with large volumes, can take well over an hour to sink a bottle and becomes bored and upset easily. She still struggles with a strong gag reflex too, which all too often undoes the hard work of the previous hour. Would her quality of life be improved by allowing her more freedom, or would it be hampered with more medical intervention? I am not wholly sure I can answer that right now. Since switching from a peptide to this current milk, I think she has put on weight. I can see one less set of ribs at least. But if so, and if they quite happily drop the feeding tube shebang at the next review, what then? Do we just struggle on in vain? I am beginning to wonder if part of the problem is that the poor mite feels she is in her eyes, constantly being asked to feed, with little satisfying result. It is going to take a lot more than some simple distractions or super-yummy food to turn mealtimes into fun times. More than just trust. Is it fair to ask her to carry on like this? 


A lot of food (haha) for thought for this premmy mum.

13 months old in hospital, when there was a vague plan to place a permenant NG tube that got quashed at the last minute, two hours before discharge!

17:53

Ways to keep your sanity and temper and keep your child amused and cheerful at teatimes*

17:53

Both offered favourite yoghurt and also selection of finger foods were declined and lobbed over the side in manner of drunk vandal. Milk was fussed about and frustration was rising as time dragged on. Poor Toby-dog on Abney and Teale was getting very ignored.

Cue impromptu messy play.

Add some mixed spice for a nice smell and some pink sugar for texture

Chuck in some mini marshmallows and macaroni for good luck. Hell, why not add an owl shaped stale biscuit. It's not going to get eaten!

Thank goodness. Is that...can it be....just maybe....a...smile?

*not foolproof in the slightest

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.

The New Teatimes

After last week's ultimatum on the eating things front, I have been doing a lot of thinking (and encouraging of biscuits). I do "get" the problem and seriousness of the issue at stake, but I am loathe to chuck a lifetime of being taught about good eating habits out the window. Am I being naive? Is this "for the sake of a few pounds and ounces" attitude in fact not facing up to the severity I am presented with, or am I making a big deal about what should be a no-brainer: doing the best for my daughter. The trouble is, in this arena I don't know what IS best for her. My gut instinct, my protective instinct says not a feeding tube. Continual changing of an NG tube would only be enforcing trauma I'd imagine, especially on a child with a proven track record of being very sensitive to procedures and it impacting on her feeding and sensory acceptance. Any child would quarrel about having something put down their nose, but on one that has already endured more than she should, it just seems cruel. Which leaves us with PEG feeding, or a gastronomy button. I am nervous about Wriggles having an operation; going under general anaesthetic on a ventilator. I know she is older now, hardier, sturdier, more robust, but it still fills me with fear. She is my baby, after all. So that leaves lots and lots of eating. We will soon be switching more high calorie nutritionally complete milk to super-high calorie nutritionally complete milk which we are all hopeful will make a difference. Although they have improved indescribably, Wriggles' eating habits are still so pitiful to attribute to her weight gain, that we have been told we will have to rely mainly on the milk for increasing her weight. Obviously whatever (fortified!) solids I can get into her will be a bonus and only enforce a positive image of feeding for her, but the message was that the focus should be on the milk and calories, calories, calories.

I am struggling now.

It seems so counter-intuitive. But is that because I am subconciously comparing Wriggles to other babies who have had the good luck to tread a more straight forward path? Am I not accepting that we need a change of tack to make some headway to get her onto that path? Am I somewhere just digging in my heels in the desire to have some grasp of normal that I know and understand, when we have deviated somewhere else? I no longer know at all.

The problem is not Wriggles being small and light. She has never been huge, and both sides of her family are on the short and slight (well, a bit wobbly round the edges once cake is discovered) side, so that doesn't concern anyone. The problem is that she is seeming to struggle maintaining weight whilst becoming mobile and exploring food. Both these things are to be expected, but the unexpected twist has been a continual slide from centile to centile. One, is a shame. Two is more frequent weigh ins. Three is really taking the biscuit (I wish!). She is pretty much the same weight she was six months ago, despite taking in more calories overall. If mealtimes (any food and milk combined) took any longer, they would quite literally run into each other. If I limit them, she does not get nearly enough to keep her going and snacks run into snacks running into meals...you get the picture! She has always struggled with volumes, which is were it makes sort-of-sense to think about an overnight tube top-up feed.

What would you do? It seems so funny just when we are beginning to have a breakthrough in curiosity and acceptance and dare I say, enjoyment, of food, to sideline it for the high calorie drink. Concentrating on milk, as opposed to exploring solids in a growing child seems just so topsy turvy. The food aspect is limited as Wriggles still struggles with so many textures and although is gaining in curiosity, will not entertain a vast number of foods. Cheese, marscapone, cream, avocado, nut butters, oil...so much I still have had no success with. Not that I am giving up that easily! So far, the best success we have had is buttered hot cross bun and a sweet potato wedge (just the one. She takes VERY small mouthfuls). I have a list of ideas longer than my arm to try, it is just finding one, or maybe more, that sticks. Wriggles, would eat crispbread or Quavers until the cows came home, but unfortunately they are mainly air!  
Would having a tube allow us more room to manoeuvre with food? Knowing that by hook or by crook, the precious calories will go in, will this free up time to play and explore food in the daytime? To take the pressure off? Or will this confuse the issue by meddling with natural hunger and feeding patterns? My other hesitation is forgetting about healthy. I don't want to "fix" this with say, cake, only to have the issue drawn out years down the line trying to then get a 5 year old to look a pea in the....erm, maybe not exactly the face. My current compromise is a full fat yoghurt or custard accompanied by fruit or a fruit/vegetable puree! But again, am I just not getting it? Are the medics being too cautious or am I not cautious enough? She is still (just) on the growth chart. When is the cut off point when enough is enough? Are we really staring it in the face? How can we be when she is still so full of beans?!

Any advice would be gratefully received. It seems so complex to me and yet to the doctors is so very black and white. I am hoping against hope that these mad ramblings turn out to be just that; ramblings of someone with an overactive brain. There is every chance that we might just stay on that curved line on the graph and buy us some extra time. Better still, Wriggles might prove them them wrong again. Maybe, just maybe, Wriggles will develop a goat-mentality overnight...

Last Chance Saloon

Today, we had our review with our dietician, Lovely Ruth. It had been a few months since we saw her and although I had the familiar butterflies, I was largely very confident with the progress Wriggles has been making with trying out new foods, textures both orally and otherwise and her acceptance with mealtimes generally. She has made huge strides with her oral motor skills this year, learning how to chew and push food around her mouth. I hoped for at the least a gold star!

In the weighing room though, I began to catch a whiff of reality as they furtively plotted her height and weight. I knew from regular weigh-ins at baby clinic and the fact her ribs have suddenly got visible that although she isn't consistently dropping weight, that her weight is very unstable. I tentatively asked how the dreaded graph was looking. She has dropped another centile, in weight and also in height for the first time.

Although never exactly beefy, I used to have a vaguely chubby baby. When we started out weaning, Wriggles was quite healthy looking and cheerfully sitting around the 50th centile. Even after her intensive care foray, she still stuck not too far from there. Even after the dreadful summer of hospital admissions, she didn't stray stupidly from her line, and sat around the 25th centile mark with her height nicely matching up. No one was really overly bothered about the chart at this point. She wasn't doing anything overly silly, although no one was quite listening to me about the lack of eating anything. Ironically, at the height of her reflux when she was vomiting large amounts nearly every feed, she was around her heaviest.

And then, bit by bit, it all began to fall away and over the last few weeks I began to uncomfortably notice my child is resembling a xylophone. I know part of it is that she is growing up and loosing the baby features and also is a lot more mobile and full of beans. But to keep being full of beans and keep her development fuelled, she really needs energy. And energy, as my biology lessens taught me, comes from food. She is already at a disadvantage with slightly dodgy lungs thanks to prematurity, so she needs even more energy than your average mad toddler. Ideally when your baby or child is learning to eat, it helps to have some weight to play with as they might yo-yo whilst dropping milk feeds to accommodate food and tasting through things finding out what they may or may not like. Unfortunately, this is where we hit our snag. Sitting at the bottom of the blasted graph, we now has no weight to play with and an all-too-well documentation of having "no reserves." And thanks to acquiring a dietician and a very interested paediatrician, now the graph does matter and we are very much on the radar of the team again. We now have to make 'plans' and have 'options'. And I'm not just talking choosing lunchbox items.

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.

Miracles do happen

Saturday 26th May, 2012

Wriggles' food diary

age 20 and a little bit months (17 and a bit corrected)

07:00

200ml Paediasure Peptide milk (high calorie formula milk that has been partially broken down to aid absorption)

09:00-10:40

Graze on small crumbs of biscuit found on the carpet. Buffet is interrupted by Mummy hoovering said crumbs up. Lord knows where they came from/how long they have been there

11:15

What are these delicious items?! About five Organix Tomato Slices (wheel shaped puffed corn type items. Mercifully containing no salt, unlike the beloved Quavers Wriggles has lived on for the past two weeks)

12:45

[ferrets in my handbag and thrusts yoghurt pot at me] "Mother, this here I believe is a yogurt and this is a spoon. Feed me!!"

Just over three quarters of an Alpro soya yoghurt, toffee flavoured

13:15

[mime] "What is that, mother?"

"My sandwich. Yum yum yum."

[grab]

"Errrr you can have A BIT. I need some lunch!"

"Hmph."

Chews a corner of malted bread: first time she has consented to trying to eat bread!

13:28

One cheese and onion crisp (Scottish Grandma's lunch)

Half a ready salted crisp (Mummy's lunch)

Several more Organix snack thingies

13:32

Stop trying to sneak food past me. I can see you have opened the chocolate rice cakes. Give!

A nibble of rice cake. Does not pass the taste test.

Another chew of becoming-stale corner of Mummy's sandwich

13:48

The end of a cardboard kitchen roll tube

13:50

160ml Paediasure Peptide with some chilled water as it is Very Hot

15:40

125ml Paediasure Peptide mixed with 25ml chilled water

17:30-18:25

Polish off remainder of Organix Tomato Slices bag and nibble on fingers

18:35

Two thirds of Alpro vanilla soya yoghurt with a about a quarter of Plum Apple and Raspberry stage one puree pouch whilst waiting for the metro back home

18:50

Few more spoonfuls of soya dessert and fruit with intermittent grazing of bit of sponge finger located under the bookshelf. (Note to self: must tidy up more often)

19:15

Chew fridge magnet.

Swiftly have fridge magnet removed.

Return to increasingly soggy sponge finger

19:40

150ml Paediasure Peptide

20:10

Gag on bottle and projectile vomit across collection of toys, sofa and carpet.

Looks suspiciously like entire teatime contents from 17:00 onwards*

20:45

125ml Paediasure Peptide as nightcap (and to replace the vast majority of dinner and previous attempted nightcap)

Ignoring the gag-induced vomiting, this is the most Wriggles has eaten for bloody ages.

It is also probably the healthiest she has eaten for bloody ages.

(Alright, it might not read very healthily, but largely she lives on a) high calorie milk which usually makes up around 90%+ of her daily nutritional intake b) Quavers-the curse of Speech and Language's suggestions c) occasional crumbs of biscuit, and not always sugar-free baby-friendly guilt-free ones at that)
It is certainly the most adventurous. She tried at least two new things. In one day.
Does this mean that my own meals are no longer sacred?!




*people always say airily of vomit "oh it's never as much as it looks!". However, Wriggles is very good at disproving this theory. On previous admissions, nurses have done double takes at the enormous pools of yuck on the floor and frequently have been known to exclaim mildly unprofessionally "Christ almighty, was that just in one sitting?" and her notes generally read 'vomit: MASSIVE +++'. She appears to have a pretty sluggish digestive system too and can quite easily soak a large adult bath towel. She has also previously (accidentally I sincerely hope) aimed into receptacles such as a mug and bowl. Classy.

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.