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!

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.

The Good, the Bad and the Health Visitor

First up, excellent news that in a fortnight Wriggles has gained 220g! How this has happened, I have frankly no idea as she has been bypassing all feeds like nobodies business and is only interested in sucking Quavers which are not full of calories. However, I am not questioning this gain but merely proudly putting my little spot around the 2nd centile on the dreaded chart and am prepared to tell any paediatricians to bog off if they think otherwise.

Rather irritatingly, going to baby clinic for these frequent weigh-ins (not by choice but on orders of the hospital) means that I have to see the Health Visitors more often than I would otherwise. I am sure that out there, there are some marvellous health visitors, and although mine is not terrible, she is very good at winding me up. I know she is not trying to, and she has admitted she has little to no knowledge of prematurity or feeding disorders and doesn't really know how to help mothers who struggle with mental health, like PND or anxiety. But each time, her well-meaning but ignorant comments sting and I go home beginning to question again if I am good enough or if making it up as I go along just doesn't cut the mustard.

110

Wriggles has been up to her tricks again and in just over a month has lost 110g.

This is not the best news. She has dropped a centile for both actual and corrected age on the sacred growth chart and although she at least is still on the blasted graph, if she gets a little bit excited or hiccupy, you can see her ribs quite clearly, which I am not particularly enchanted about.

I honestly would not be one of those fretting mothers who anxiously plot each milestone, centimetre and milligramme if it wasn't for being under a handful of consultants and therapists (Wriggles, not me) but to a large extent, I have to do as they advise/say and they say she needs to be going in one direction: up.  The main two problems are a) chronic lung disease, due to extended ventilation and dependence on oxygen. Although she no longer requires help with breathing and can sufficiently oxygenate herself, she still works harder than the average child and thus it impacts on her growth. Apparently it can on energy levels too but no one has told Wriggles this, hence the nickname 'Wriggles'.