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.
Showing posts with label feeding. Show all posts
Showing posts with label feeding. Show all posts
Monday, January 14
Friday, September 7
One Week On
So, we are one week on from being home alone with our new PEG tube and I am pleased to say that actually, it is a lot easier than I feared! Last Friday, after getting home exhausted from a sleep deprived few days and understandably cranky baby, I was so worried that this was the icing on the cake and I just couldn't cope. The phone was on standby, ready for me to ring the hospital and plead that I would have to move there and become a permanent in-patient as we just couldn't do things at home.
How wonderful a new day is though-this week we have gained in confidence, Wriggles has regained her mobility and I have set up and disconnected the tube and feeds in shopping centres, museums, cafes, the bus stop and in the playground, surrounded by people. Whether a good or bad thing, I couldn't care less and actually once I am used to it, it is more discreet than I originally thought and people are just as likely to stare because my beautiful nutcase is cackling away in the buggy pointing at things and throwing Noodle the hedgehog over the side as opposed to wonder why an earth I am bobbing around with a syringe and a beeping buggy.
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Climbing skills? Check! Wriggles regains her confidence and ability to move about |
The most difficult thing is keeping Wriggles entertained for the duration of a feed. Luckily, the large chunk of her feeds is contained in a 10 hour night feed so we only have three daytime boluses, one of which can often been coincided with nap time. At the start of the week, I simply could not get any of the boluses, even the smallest amount, under an hour and they would often stretch on for longer to keep Wriggles from bringing them straight back up. I have slowly managed to tweak the rates up, and whilst they are not quite up to the half hourly rate we had before, they are more manageable now and things do not seem half as depressing now there are longer stretches and it no longer seems Wriggles is attached at all times to a feeding pump! The best thing, without a doubt, is not having to re-pass a tube regularly. The nasogasteric tube was re-passed so frequently and was horrible to see. But no more!
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The New Teatimes: running after toddler wielding feeding pump |
Bedtime has slowly become easier. I have managed to bring bedtime forwards a little to something resembling our pre-hospital routine and am hopeful I will be able to soon do the same for the nap and to start having a mildly more structured morning. Living in pyjamas is beginning to take it's toll, especially when realising the rest of the world does not regard 9am as particularly early. Wriggles will now fall asleep by herself again, rather than the beginning of the week when she needed rocking to sleep and a great deal of comfort throughout the night. Her stoma infection is clearing up nicely and she is far less confused or distressed. I am still feeling exhausted after the stints in hospital. It is hard to
switch off, and if I go to bed at a sensible time, I often lie awake
for hours. Like everything else, it is getting easier just not at the
fast pace I would prefer. But like everything else, I am getting used to
it. Slowly. The tiring part is that whilst my toddler might need some
extra care and things doing compared to another toddler, she is still
that: a toddler. A full-of-beans, opinionated, lunatic,
mountaineer-to-be, cheeky, frustrating, wonderful toddler. Does she care
she does some things differently to her friends? Does she heck. Today
we met up with some baby friends in the park, and it was so lovely to
see them all excitedly pointing at each other and one of them exclaim
"Lis! Lis!" at her (toddler language for her name it would seem. Other
toddler-speak highlights from her friend included "Can you say please?"
"Mice"). I went home feeling refreshed and like a bit of the worry had
ebbed away.
So...here is to another week. Cheers!
Saturday, July 21
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.
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.
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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! |
Saturday, July 14
Understanding
Recently, I have been thinking a lot about speech and understanding.
Wriggles is not yet speaking, but quite a few of her contemporaries have begun to say first words (but they are not nearly as pretty or funny or clever...) and learn counting, names and commands. I am not really worried about the absence of speech, and neither is the speech and language therapist which is a good sign to me. The pair of us get by with a very one-sided conversation and generally by intuition, guess work and knowing her inside out, I can just about grasp what it is Wriggles is going on about as she sits there going "mmmmmaaaammmmmnnaaanannanamamammamggh" or words to such effect.
Signing has really made a difference recently. We started going to baby signing (derived from British Sign Language but with similarities to Makaton in that there is a lot of emphasis on speech accompanying the sign as it is to aide spoken language, not substitute) at 1 year old (9 months corrected) and finally at 18 months old, Wriggles signed "all gone" in context.
That was it for quite a while.
Around her, the other younger babies steamed ahead ticking off 5 signs, 10 signs, extra signs....
"All gone!"
She knows when she has been cheeky or clever and though doesn't always show much reaction to words, has a very strong visual memory as when we see something familiar, her little hands start clenching in excitement, or she hides behind my armpit depending on what it is. We read books an awful lot, and she knows the order of favourite books and has pictures which stick in the memory she will return to.
So there is clearly a decent enough level of understanding.
There are three things I am mulling over trying to enforce an understanding of or whether to leave it. She is now 19 months corrected and 22 months actual. The last I heard of it, she has been classified as 'globally delayed' although I am convinced her cognitive, social and problem solving skills are pretty much on track for corrected age at least and her fine motor skills are catching up quick. I'm not too concerned about speech as there is understanding present and some communication via signing, which leaves gross motor as the "problem" area. Sometimes, she seems quite young and sometimes far older and wiser. Anyway, what I have been wondering about is:
1. Her Story
How soon do you start explaining prematurity? Obviously in incredibly simplistic terms; 'small/poorly/early' seems a good beginning. She has seen pictures of herself since virtually birth but has never been interested enough to sit still for 2 seconds to see who the pictures are of. She is more interested though in the "term" pictures than neonatal ones. It is down to prematurity as to why to are in hospital such a lot and regularly see doctors and nurses. This is Wriggles' "normal", as she knows nothing different and does not yet have a sense of being any different to those she sees regularly. Not-yet-2 seems very young to grasp a history how you got here, but we know other little people either with or those expecting siblings, that grasp a vague concept of babies and others that know about caring for baby dolls and such similar emotive role playing.
2. The Entourage
Which leads us to the medical professionals. The person we see most is our physio lovely Gemma. Wriggles definitely recognises her and although she won't let her touch her feet, she will happily go to her. I often wonder, does she think she is a funny friend or does she know she is different? I have tried to vaguely explain Gemma comes to do exercises to help her legs so she can feel better but don't get a flicker of recognition or interest. Partly, breaking down the collection of professionals relies on recognising body parts, ailments and time frames. We are getting there on body parts (at least for nose, tummy and the other day, knees) but it has taken a long time for her to be aware of many limbs far less have names or uses for them. The only reason I have been wondering recently about being clearer about separating these people is that she is becoming increasingly aware by the name and quite clear about reactions to places, and I think sometimes it must be very bewildering to just be taken somewhere which either may be nice or may be upsetting or may be tiring. It might be for a short time (e.g. doctors) or might be overnight or longer (e.g. hospital!) but equally the same place (hospital) might be for a check-up or a social visit (e.g. NICU support group and an opportunity to butter up the nurses who remember her as a very fragile scrap). We've read books like Miffy Goes to Hospital and at least pointed at pictures and named key things, but judging by the lack of reaction, linking a connection between story and real life is too advanced. Although some books do elicit connections being made, relating to perhaps routine.
3. Feeding Hell
This is the biggie and the one that is closest to my heart, divides my brain most and is most pressing.
Given our recent ultimatum,time is of the essence and feeding either fluids or solids is really now very important to produce results and also maintain enjoyment and acceptance.
Do I carry on as normal, and then if there are negative consequences (feeding tube implemented or some hospital stays specifically for observing feeding patterns) have to then quickly find a way of describing it in ways a very little person can grasp?
Or do I try to introduce the subject without sounding too terrifying or like a threat? I don't want to scare the poor mite, but it is very unfortunate that at present she is being incredibly fussy about even the few things she would accept orally at a time when I really need her to be more open in order for us to stay off the dietician's radar as much as possible.
"Eat some yoghurt or someone'll put a tube down your nose" does not exactly conjure up a jolly mealtime to look forward to.
Visually presented, she does have a concept of what an NG tube is. I know this because in April when she was poorly and ended up on a drip in the end, when they tried to insert an NG tube, merry hell broke loose before they got within two feet of her with it and she was clearly absolutely terrified.
I really really really REALLY do not want that to be a regular occurrence.
Obviously I am hoping it won't be.
But I do have to face up that either NG or PEG feeding may be a reality in the short term. She is a not a little baby anymore. She is aware of surroundings, has some sense of things to happen and has very clear triggers, visual stimulus and a surprisingly clear memory.
When she was poorly very recently, I did try to reason with her (I say reason; I was literally sobbing in desperation trying to persuade her to at least part her lips to take just a 5ml syringe of water, hydration fluids, milk, juice, Calpol...anything) when she was becoming very dehydrated through refusal to take anything orally and the nurse was warning us that an NG tube was very much on the horizon as soon as the shifts changed over if progress had not been made. Maybe she took pity on me, maybe she just changed her mind, maybe she understood-but at 10pm that night, she finally took some fluids for the first time in 24 hours.
Now that was an extreme situation. We were both displaced, tense, she was very ill and I was very upset. Crying at teatime is not an everyday occurrence and it is not going to become one. I don't want to sound like I am regularly making threats, but should I refer to the prospect of tube feeding in the future? Or should I just leave things relaxed and then think on my feet if it comes to that?
Who would be a parent, eh?!
Thursday, July 5
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
Thank goodness. Is that...can it be....just maybe....a...smile?
Labels:
dinner,
feeding,
food,
meal times,
mess,
messy play,
oral aversion,
sensory
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.
Monday, June 25
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.
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...
I am struggling now.
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?!
Wednesday, June 20
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!
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.
Thursday, June 14
Warning: Contains Sick
I am sick of all the sick.
I have scrubbed my carpets better than Cinderella ever could and I can still smell it.
On my fingers, washed a thousand times.
On our clothes, washed again and again and aired in sweet fresh air.
In Wriggles' soft baby hair, washed as many times as she'll let me.
The sickly smell of regurgitated vanilla peptide-milk has seeped into my consciousness and is following me about.
At work or with friends I become paranoid others smell it too.
Every time in public that Wriggles' hiccups, I tense. Is another fountain coming?
Did I pack enough spare clothes?
Have I got a muslin or tea towel?
If not, why an earth not? Stupid mama.
How pissed off is this swanky art gallery going to be? (Actually didn't bat an eyelid.)
Slightly, Wriggles is too over-friendly with the rounds of viruses. Mostly, she has a very sensitive gag reflex and still at 21 months is plagued by reflux.I am pretty sure the gag reflex is strongly linked with reflux, which has besieged her since term.
During the first year of your baby's life, the muscular valve
gradually gets stronger and better at keeping food down, so his chance
of having reflux decreases. About half of babies will get some reflux
during their first three months, but it’s only a real problem for a
small percentage of these. By 10 months only about five per cent of
babies have reflux," from Babycentre.
Oh dear. Once again, we sent to have fallen into the small pond of percentages making us ever so slightly different from those all-hallowed baby books. Wriggles has always had the vomiting variation of reflux. Projectile vomiting at that. She can easily aim halfway across a room. One of my strongest memories from her 'newborn' period was when she was term plus a few weeks, one friend who was visiting came in and sat on the end of my bed. She was still wearing her coat. She opened her mouth the speak and bleeeeeeeeeeeugh-Wriggles managed to get her dinner in the coat pocket. We can laugh about it now. To her credit, my friend could laugh about it then, once she had gotten over the first few seconds of being stunned. She even (sort of) continued laughing when she had to wear her coat into work the next morning.
It took a long time to get a GP or HV to take me seriously about the reflux. It even took a while to persuade the neonatal consultant we were under. In fact, it took over seven months and changing doctors surgeries to get anyone to listen, and then it clicked with the consultants. The difficulty feeding, the recurrent chest infections, the coughing... Possibly because she was vomiting large quantities several times a day, and as a result of the irritation was producing large amounts of mucous, which really wasn't helping her already impaired scarred lungs.
The first port of call for most babies trying medication to control reflux, is commonly an antacid such as Infant Gaviscon. They reduce the acidity, so even if they do not decrease to occurance of reflux, they should reduce the pain and discomfort. Infant Gaviscon helps to thicken the stomach contents making it harder to force their way up. Side effects include constipation, which Wriggles already had and was made worse. Gaviscon did not suit her at all, so off we trundled back to our New Favourite Ever GP. Infant Gaviscon does suit a lot of babies though, and for many will control the symptoms. It can be used if you are breastfeeding also, if added to a small amount of water in a bottle.
The second medications we tried were an H2 Blocker (or H2RAs) and prokinetic agents in tandem with each other. These were both weight sensitive so needed reviewing regularly, but finally began to do the trick. Week by week, although the reflux was not eliminated, it was lessened. We were able to go from about 60-70% of feeds coming back up to maybe once or twice a day. It was still far from this posseting I have read about, but my washing machine could at least draw breath!
H2 Blockers, such as ranitidine, act in a similar way to antacids. They reduce production of stomach acid so what comes up should be less and hurt less.
Prokinetic agents, such as domperidone, are used to treat nausea and vomiting in adults. It also helps the stomach contents to move more quickly into the intestines. Prokinetic agents help formula fed babies most and those on solids, and breastmilk is digested quicker anyway.
If none of these make a significant difference, there are PPIs or proton pump inhibitors which we eventually ended up trying when the oral aversion and still-ongoing vomiting was affected her weight and intake of solids (ie. none) and milk, which was unreliable. Omeprazole or lansoprazole are often prescribed and can be in a liquid form which has a very short shelf life and is hideously expensive, or more commonly MUPS-a water-dissoluble tablet. The plus side of MUPS is that the strong medicinal flavour and odour is removed: the downside is that as in many soluble medication, it is never 100% and so you can be there stirring the solution until your arms ache like billy-oh to ensure a correct dosage. It is also easier in tube-fed children to use liquid, although certainly not impossible to use the tablets.
If reflux is ongoing, it could be worth checking that it is reflux and not a Cows Milk Protein allergy, as symptoms can be similar. If you are formula feeding, you can request to try either a lactose free-formula, soya formula or hypoallergenic formula such as Neocate or Nutramigen. If your baby is on solids; try cutting out dairy products making sure to replace them with appropriate foods for a balanced meal plan. Parents should be able to request a meeting with a paediatric dietician if their HV cannot give them full information needed. There is an ever increasing market of dairy and lactose-free items; it just takes that extra five minutes of label reading in supermarkets or some ingenious recipe scouring of which the internet is a goldmine. Soya intolerance or allergy is also not uncommon in babies, so it could be worth considering this. If you are breastfeeding, try cutting things out from your diet to see if it makes a difference and keep a food diary. It will take a few weeks to work, to get all the proteins out of the body's system so if you or your doctor suspect this, you may have to be patient and give it a while. Working with our paediatrician and sanity-saving-dietician, I tried Wriggles on a dairy free diet for three months. It made a very slight difference to her stools, but not to the vomiting, chestiness, feeding ambivalence and her weight gain plateaued then wavered. With the blessing and encouragement of our dietician, Lovely Ruth, we gave this up and switched to a high calorie peptide milk with lansoprazole which we have been on for the last seven months.
And all was well. Most of the time.
The vomiting and chestiness reduced, and with a sigh of relief, we began to think we had seen the back of the big, bad Reflux. The main problem we were left with, was a very sensitive gag palate. Sometimes, all it takes is for something to touch Wriggles' lips and she can be sick. Now she is older, I do think a small amount of this is psychological behaviour, but for the most part, she goes eagerly to complete a feed or try something and it is heartbreaking then to see her enjoyment and hard work come back up all over the pair of us. Watching her retch over and over until there is nothing but bile and mucous is really unpleasant-emotionally as well as physically! My poor bairn. Teething and bugs always make it far worse, and I suspect this current resurgence we are in the middle of is fighting off a plethora of bugs that she is meeting in the temporary nursery she is at for the last week. Roll on the end of June!
Other things you can try include using a wedge or creating a slope for your child to sleep on (think several Argos catalogues and Yellow Pages), frequent winding and little and often feeds. Also buying really nice smelling soap to make bath times more relaxing to give that dreadful sick-y smell a good seeing off-the same applies for investing in pot pourri in the living room. And take a look at Living With Reflux: a fabulous charity dedicated to supporting those people through the difficult time when you appear to have morphed from mother to Mrs Tiggywinkle and is full of supportive similarly-frazzled parents with tips for understandably-frustrated babies and to just soothe your nerves as your HV shrugs it all off. Again. But keep trying with doctors if you believe it really is affecting your child; arm yourself with information and don't give up. You know your child best and know what goes on everyday. Babies need a spokesperson and you need a night's sleep!
"Reflux is what happens when your baby's stomach contents come back up
into his food pipe (gullet or oesophagus) or even into his mouth. The
long name for reflux is gastro-oesophageal reflux disease.
Babies get reflux because the muscular valve at the end of the food
pipe, which acts to keep food in the tummy, hasn’t developed properly
yet. This means that when your baby’s tummy is full, food and acid can
come back up. This can cause him to bring up small amounts of milk
(possetting) or even vomit.
Oh dear. Once again, we sent to have fallen into the small pond of percentages making us ever so slightly different from those all-hallowed baby books. Wriggles has always had the vomiting variation of reflux. Projectile vomiting at that. She can easily aim halfway across a room. One of my strongest memories from her 'newborn' period was when she was term plus a few weeks, one friend who was visiting came in and sat on the end of my bed. She was still wearing her coat. She opened her mouth the speak and bleeeeeeeeeeeugh-Wriggles managed to get her dinner in the coat pocket. We can laugh about it now. To her credit, my friend could laugh about it then, once she had gotten over the first few seconds of being stunned. She even (sort of) continued laughing when she had to wear her coat into work the next morning.
It took a long time to get a GP or HV to take me seriously about the reflux. It even took a while to persuade the neonatal consultant we were under. In fact, it took over seven months and changing doctors surgeries to get anyone to listen, and then it clicked with the consultants. The difficulty feeding, the recurrent chest infections, the coughing... Possibly because she was vomiting large quantities several times a day, and as a result of the irritation was producing large amounts of mucous, which really wasn't helping her already impaired scarred lungs.
The first port of call for most babies trying medication to control reflux, is commonly an antacid such as Infant Gaviscon. They reduce the acidity, so even if they do not decrease to occurance of reflux, they should reduce the pain and discomfort. Infant Gaviscon helps to thicken the stomach contents making it harder to force their way up. Side effects include constipation, which Wriggles already had and was made worse. Gaviscon did not suit her at all, so off we trundled back to our New Favourite Ever GP. Infant Gaviscon does suit a lot of babies though, and for many will control the symptoms. It can be used if you are breastfeeding also, if added to a small amount of water in a bottle.
The second medications we tried were an H2 Blocker (or H2RAs) and prokinetic agents in tandem with each other. These were both weight sensitive so needed reviewing regularly, but finally began to do the trick. Week by week, although the reflux was not eliminated, it was lessened. We were able to go from about 60-70% of feeds coming back up to maybe once or twice a day. It was still far from this posseting I have read about, but my washing machine could at least draw breath!
H2 Blockers, such as ranitidine, act in a similar way to antacids. They reduce production of stomach acid so what comes up should be less and hurt less.
Prokinetic agents, such as domperidone, are used to treat nausea and vomiting in adults. It also helps the stomach contents to move more quickly into the intestines. Prokinetic agents help formula fed babies most and those on solids, and breastmilk is digested quicker anyway.
If none of these make a significant difference, there are PPIs or proton pump inhibitors which we eventually ended up trying when the oral aversion and still-ongoing vomiting was affected her weight and intake of solids (ie. none) and milk, which was unreliable. Omeprazole or lansoprazole are often prescribed and can be in a liquid form which has a very short shelf life and is hideously expensive, or more commonly MUPS-a water-dissoluble tablet. The plus side of MUPS is that the strong medicinal flavour and odour is removed: the downside is that as in many soluble medication, it is never 100% and so you can be there stirring the solution until your arms ache like billy-oh to ensure a correct dosage. It is also easier in tube-fed children to use liquid, although certainly not impossible to use the tablets.
If reflux is ongoing, it could be worth checking that it is reflux and not a Cows Milk Protein allergy, as symptoms can be similar. If you are formula feeding, you can request to try either a lactose free-formula, soya formula or hypoallergenic formula such as Neocate or Nutramigen. If your baby is on solids; try cutting out dairy products making sure to replace them with appropriate foods for a balanced meal plan. Parents should be able to request a meeting with a paediatric dietician if their HV cannot give them full information needed. There is an ever increasing market of dairy and lactose-free items; it just takes that extra five minutes of label reading in supermarkets or some ingenious recipe scouring of which the internet is a goldmine. Soya intolerance or allergy is also not uncommon in babies, so it could be worth considering this. If you are breastfeeding, try cutting things out from your diet to see if it makes a difference and keep a food diary. It will take a few weeks to work, to get all the proteins out of the body's system so if you or your doctor suspect this, you may have to be patient and give it a while. Working with our paediatrician and sanity-saving-dietician, I tried Wriggles on a dairy free diet for three months. It made a very slight difference to her stools, but not to the vomiting, chestiness, feeding ambivalence and her weight gain plateaued then wavered. With the blessing and encouragement of our dietician, Lovely Ruth, we gave this up and switched to a high calorie peptide milk with lansoprazole which we have been on for the last seven months.
And all was well. Most of the time.
The vomiting and chestiness reduced, and with a sigh of relief, we began to think we had seen the back of the big, bad Reflux. The main problem we were left with, was a very sensitive gag palate. Sometimes, all it takes is for something to touch Wriggles' lips and she can be sick. Now she is older, I do think a small amount of this is psychological behaviour, but for the most part, she goes eagerly to complete a feed or try something and it is heartbreaking then to see her enjoyment and hard work come back up all over the pair of us. Watching her retch over and over until there is nothing but bile and mucous is really unpleasant-emotionally as well as physically! My poor bairn. Teething and bugs always make it far worse, and I suspect this current resurgence we are in the middle of is fighting off a plethora of bugs that she is meeting in the temporary nursery she is at for the last week. Roll on the end of June!
Other things you can try include using a wedge or creating a slope for your child to sleep on (think several Argos catalogues and Yellow Pages), frequent winding and little and often feeds. Also buying really nice smelling soap to make bath times more relaxing to give that dreadful sick-y smell a good seeing off-the same applies for investing in pot pourri in the living room. And take a look at Living With Reflux: a fabulous charity dedicated to supporting those people through the difficult time when you appear to have morphed from mother to Mrs Tiggywinkle and is full of supportive similarly-frazzled parents with tips for understandably-frustrated babies and to just soothe your nerves as your HV shrugs it all off. Again. But keep trying with doctors if you believe it really is affecting your child; arm yourself with information and don't give up. You know your child best and know what goes on everyday. Babies need a spokesperson and you need a night's sleep!
Friday, June 8
A Day of Two Halves
If ever there was a day of getting out on the wrong side of bed, today was it. I only have one side of bed, but obviously today it was Wrong.
I had a rare lie-in until 08:20 (thanks Wriggles!) but awoke in grouch-mode and it got worse and worse. I intended to get ready early and go out before 10 to take Wriggles to soft play before lunch in the hope of tiring her out a bit so she might re-take up napping in the daytime and thus start sleeping a bit more normally at night times. Partly due to the rain and mostly due to my ineptitude, we weren't both ready until gone 11. Wriggles was driving me up the wall, only content to throw everything off my bookshelf constantly ad shriek at me if I dared correct her from reading books upside down (not a deliberate attempt to spoil fun: she can and has for months read them the 'right' way and now her upside-down-and-back-to-front method is very rough, breaks the spine of all the books and thus makes the pages likely to fall out. She has developed superhuman strength and can easily destroy a board book) or suggest that she could do something, anything, other than book flinging either with or without me. I discovered I had missed a series of payments on things so had to do some organising and grovelling which is never nice, and finally wrapped up a parcel to post to a dear friend who is having a baby shower this weekend, which I cannot afford to go to (WHY do airlines charge practically an adult fare for infants who will after all, only be sat on your lap with no luggage?). There wasn't a proper reason for getting cross, especially with Wriggles who after all was only being a toddler, but I found myself getting increasingly wound up and stressed with everything. The washing up pile haunted me, reminding me that I was rubbish at doing things when I knew I should and I felt tired and a bit overwhelmed by just life.
By the time we left, it was pouring down but I could not stand to stay inside. I know from prior experience, being couped up with a full of beans Wriggles in destroy mode is not a recipe for a happy day. We had a nice hour where we go some jobs done, called in on our recently retired childminder who was delighted to see the Wriggly one and had some lunch . Then the trouble brewed again as I tried to persuade the baggy-eyed and yawning child to have a nap. Just five minutes (or preferably twenty if you're asking). She looked sleepy. She has until very recently, had a hour or longer nap after lunch to recharge her batteries. This has suddenly turned into a battle meaning by 5pm she is a whining and exhausted child and bedtime is frankly a miracle when it eventually occurs. We walked around the park. We walked around the park again. We had some top-up milk. We walked around the park some more. In the rain. An hour later, with a very frayed temper I gave up.
It is very rare I am grumpy with Wriggles or tell her off seriously. I do employ "No!" at appropriate moments ("NO Wriggles do not turn the TV on or off/grab plug sockets/climb onto the toilet/throw your dinner on the floor") but partly I've never really had cause to tell her off and partly I'm terrible at it as I instantly feel terrible. I'm not talking about dodging discipline, but shouting for the sake of a bad or frazzled mood over something that doesn't warrant that level of reprimand. I know it was wrong to snap at her, but snap I did. What with working and managing everything on my own from baby things to finances to the sodding washing up (where, where does it come from!) when it gets to the end of the week, a hard week of sleep regression, a frustrating previous day at work, then to be honest I need Wriggles' nap as much as she does. Just to get fifteen minutes or so to me. Just to sit down without guilt and breathe a sigh of relief. Just to know that the whining will almost-probably be cut out later. Just to have a cup of coffee that is still hot. Just to stop being two parents rolled into one with eyes in the back of my head and enough patience to shame a saint, for a tiny tiny fraction of time. I was cross and I told her off. I'm not proud of it. At all. But it was that or burst into tears. Needless to say, it did nothing. With defeat and now over an hour lost, I gave up and chalked it up to my list of failings and headed into soft play. As I paid the entrance fee, I knew full well that she wouldn't last the two hours it gives you but by now we both needed somewhere neutral and shrieking friendly.
And actually it did the trick. I chilled out and relaxed especially as Wriggles clambered over me. Seeing her cackling away to herself trying to climb the wrong way up the slide reminded me why I love her completely. I helped her perfect her clambering skill, which I suspect I may regret. It was rather hot in there, and as time passed Wriggles began to concern me slightly. She was getting very sweaty and clammy; I removed her t-shirt and clipped her face back. She was still very hot. In horror, I watched a bright rash spread across her arms and chest. It was very red and very spotty. Whether fever or heat rash it was hard to tell. Gradually it faded as I tried to cool her down and my bed time it is as if it had never been there. It is horrible moment though when your heart leaps into your mouth and panic is suddenly everywhere! We came home without even and had a cuddle that put the world, or at least mine, to right.
This week has been a little ray of bliss in terms of Wriggles' feeding. We have tried:
It dawned on me that I am enjoying food times with Wriggles. For the last 14 months I have been very much trying to enjoy food times zen to a fine art, but enjoy it? No way. Would you enjoy your offerings refused for months and months? Every day, several times a day no matter what you do with it? Would you enjoy seeing your child make herself sick with distress because she caught sight of a spoon....no not her spoon, your spoon you intend to eat your yoghurt with? Would you enjoy finally revelling in her trust that fromage frais is actually yummy only to see her stomach contents cover the entire kitchen because of one little gag? No, thought not. Live with, yes. Accept, yes. Chill out about, very almost yes. Enjoy? No. But now, now Wriggles is trusting food enough to at least make sensory discovery and her own mind up and at best actually use her oral skills and digest it, now there is variety and her enthusiasm matches my own, now it is fun. Now if she just put on a little bit of weight so I couldn't play the xylophone on her ribs...!
I had a rare lie-in until 08:20 (thanks Wriggles!) but awoke in grouch-mode and it got worse and worse. I intended to get ready early and go out before 10 to take Wriggles to soft play before lunch in the hope of tiring her out a bit so she might re-take up napping in the daytime and thus start sleeping a bit more normally at night times. Partly due to the rain and mostly due to my ineptitude, we weren't both ready until gone 11. Wriggles was driving me up the wall, only content to throw everything off my bookshelf constantly ad shriek at me if I dared correct her from reading books upside down (not a deliberate attempt to spoil fun: she can and has for months read them the 'right' way and now her upside-down-and-back-to-front method is very rough, breaks the spine of all the books and thus makes the pages likely to fall out. She has developed superhuman strength and can easily destroy a board book) or suggest that she could do something, anything, other than book flinging either with or without me. I discovered I had missed a series of payments on things so had to do some organising and grovelling which is never nice, and finally wrapped up a parcel to post to a dear friend who is having a baby shower this weekend, which I cannot afford to go to (WHY do airlines charge practically an adult fare for infants who will after all, only be sat on your lap with no luggage?). There wasn't a proper reason for getting cross, especially with Wriggles who after all was only being a toddler, but I found myself getting increasingly wound up and stressed with everything. The washing up pile haunted me, reminding me that I was rubbish at doing things when I knew I should and I felt tired and a bit overwhelmed by just life.
By the time we left, it was pouring down but I could not stand to stay inside. I know from prior experience, being couped up with a full of beans Wriggles in destroy mode is not a recipe for a happy day. We had a nice hour where we go some jobs done, called in on our recently retired childminder who was delighted to see the Wriggly one and had some lunch . Then the trouble brewed again as I tried to persuade the baggy-eyed and yawning child to have a nap. Just five minutes (or preferably twenty if you're asking). She looked sleepy. She has until very recently, had a hour or longer nap after lunch to recharge her batteries. This has suddenly turned into a battle meaning by 5pm she is a whining and exhausted child and bedtime is frankly a miracle when it eventually occurs. We walked around the park. We walked around the park again. We had some top-up milk. We walked around the park some more. In the rain. An hour later, with a very frayed temper I gave up.
It is very rare I am grumpy with Wriggles or tell her off seriously. I do employ "No!" at appropriate moments ("NO Wriggles do not turn the TV on or off/grab plug sockets/climb onto the toilet/throw your dinner on the floor") but partly I've never really had cause to tell her off and partly I'm terrible at it as I instantly feel terrible. I'm not talking about dodging discipline, but shouting for the sake of a bad or frazzled mood over something that doesn't warrant that level of reprimand. I know it was wrong to snap at her, but snap I did. What with working and managing everything on my own from baby things to finances to the sodding washing up (where, where does it come from!) when it gets to the end of the week, a hard week of sleep regression, a frustrating previous day at work, then to be honest I need Wriggles' nap as much as she does. Just to get fifteen minutes or so to me. Just to sit down without guilt and breathe a sigh of relief. Just to know that the whining will almost-probably be cut out later. Just to have a cup of coffee that is still hot. Just to stop being two parents rolled into one with eyes in the back of my head and enough patience to shame a saint, for a tiny tiny fraction of time. I was cross and I told her off. I'm not proud of it. At all. But it was that or burst into tears. Needless to say, it did nothing. With defeat and now over an hour lost, I gave up and chalked it up to my list of failings and headed into soft play. As I paid the entrance fee, I knew full well that she wouldn't last the two hours it gives you but by now we both needed somewhere neutral and shrieking friendly.
And actually it did the trick. I chilled out and relaxed especially as Wriggles clambered over me. Seeing her cackling away to herself trying to climb the wrong way up the slide reminded me why I love her completely. I helped her perfect her clambering skill, which I suspect I may regret. It was rather hot in there, and as time passed Wriggles began to concern me slightly. She was getting very sweaty and clammy; I removed her t-shirt and clipped her face back. She was still very hot. In horror, I watched a bright rash spread across her arms and chest. It was very red and very spotty. Whether fever or heat rash it was hard to tell. Gradually it faded as I tried to cool her down and my bed time it is as if it had never been there. It is horrible moment though when your heart leaps into your mouth and panic is suddenly everywhere! We came home without even and had a cuddle that put the world, or at least mine, to right.
This week has been a little ray of bliss in terms of Wriggles' feeding. We have tried:
- Mummy's sandwich
- Mummy's cake
- Strips of pitta bread
- Wafers
- A bit of buttered roll
- A vegetarian sausage
It dawned on me that I am enjoying food times with Wriggles. For the last 14 months I have been very much trying to enjoy food times zen to a fine art, but enjoy it? No way. Would you enjoy your offerings refused for months and months? Every day, several times a day no matter what you do with it? Would you enjoy seeing your child make herself sick with distress because she caught sight of a spoon....no not her spoon, your spoon you intend to eat your yoghurt with? Would you enjoy finally revelling in her trust that fromage frais is actually yummy only to see her stomach contents cover the entire kitchen because of one little gag? No, thought not. Live with, yes. Accept, yes. Chill out about, very almost yes. Enjoy? No. But now, now Wriggles is trusting food enough to at least make sensory discovery and her own mind up and at best actually use her oral skills and digest it, now there is variety and her enthusiasm matches my own, now it is fun. Now if she just put on a little bit of weight so I couldn't play the xylophone on her ribs...!
Getting a bit cocky with the "climbing" malarky... |
Sunday, June 3
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.
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!
Friday, June 1
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...
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.

Happy birthday, highchair.
Labels:
baby,
development,
equipment,
everyday,
feeding,
firsts,
food,
highchair,
messy play,
oral aversion,
playtime,
toddler,
toys,
weaning
Saturday, May 26
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.
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