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.