Apart from a couple of weeks when William was a tiny baby, he has always been tube fed due to an unsafe swallow. Up until a year ago he was fed entirely on a medical nutritionally complete formula, delivered monthly to our home, courtesy of the NHS. Athough William tolerated formula pretty well, we made the decision last year to try him on a blended diet where we blend up normal foods to give through his tube. This is becoming a more popular way to be fed if you have a tube but is still relatively 'new' in this country.
Years ago, people with feeding tubes would be fed blended food because medical formulas weren't available. Over time more and more nutritionally complete formulas became available which suited the hospital environment better as the feeds are sterile. Over time many more patients have come to live long term in the community with a feeding tube and there is now starting to be a return once more to blended diets.
We didn't take the decision to feed William a blended diet lightly. We knew it would be a LOT more work on our part, we had no idea how William's body would respond to normal food and we weren't sure how the medical team around us would react to our decision as we'd heard many mixed reports from other families. However, last March, we took the plunge and bought a very expensive industrial blender! We introduced food relatively quickly but took care introducing common allergens. We gradually weaned him from the formula and have (mostly!) never looked back! We have a fantastic dietician who has supported us and our whole medical team has been really supportive.
We decided to switch to a blended diet for a number of reasons. Firstly we felt it would add a bit of normality into our care for William. So much of what we do for William is very medical, but giving him regular foods gives us a bit of control back and let's us make normal parent choices about what he eats! Secondly we felt a blended diet might suit William better. I read an article written by a tube fed adult who reported that formula would feel heavy in his stomach and could make him feel sick whereas blended food sat a lot better in his stomach. Thirdly we hoped the diet would help to control William's mucus production which had become just a little ridiculous! This in turn would hopefully reduce his sickness. Fourthly we felt feeding him a blended diet was just a lot more natural. William has so many medical problems that we wanted to do everything we could to minimise him developing any problems with his digestive system. For us, we felt giving him a blended diet would potentially reduce the likelihood of this as it mimics more closely a normal way of eating.
As Eliza explained in her post here, William has three meals a day with 'drinks' of water in between. We tend to blend breakfast two days worth at a time. Lunches are blended in batches and kept in the freezer until we need them. His tea time meal is blended fresh most evenings as William usually eats a variation of what we are eating. William became dairy free a couple of months ago so this limits some of what he can have. We also have to be careful that his feeds have the right amount of calories without too much quantity so we use a lot of oils, nuts and seeds to add calories without adding quantity. We don't need to worry about the taste of William's feed so this give us a quite a lot of scope with what we can do! A typical day's meals might look something like this for William:
Breakfast - soya milk, fruit juice, weetabix, muesli, banana, pumpkin seeds, coconut oil
Lunch - seeded wholemeal wrap, salmon, tomato, carrot, spinach, flax seed, prunes, soya milk, hemp oil
Tea - Pasta, sausage, onion, carrot, watercress, apple, soya milk, rapeseed oil, chia seeds
Preparing his meals takes a lot of work! We calculate everything! Every family is different in the way they prepare, plan and give a blended diet. Lots of people don't calculate in anywhere near as much detail as we do. We felt this was the best approach for us as William gives no indications of being hungry or full. We also love any excuse for a good spreadsheet!!! Over time we have got more relaxed with it as we've got used to quantities so we now rarely weigh out his tea time meal, we just guess quantities. Thankfully William is given a comprehensive multivitamin so we don't have to worry about all his nutrients, but we make sure we give him the right amounts of calories, carbohydrates, protein and fat in each meal.
We use our special spreadsheet to plan every meal. On one page we have a whopping list of ingredients and the calorie/carb/protein/fat content per 100g.
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| Meal planner |
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| Ingredients list |
The diagram below shows our blending process for making a batch of lunch meals. The ingredients are added to the blender all weighed out and are blended into liquid. The bread/wraps are then added in and blended too. Water is added until the blend is nice and smooth. The mixture is weighed and divided by the number of meals we have planned to make. It is then measured out into tubs for freezing.
On the whole the blended diet has so far been a success for us. While it does take a lot more time and effort to prepare and give, we enjoy planning his meals and varying what he eats. Since going dairy free we have noticed a big reduction in his mucus production which will undoubtedly help his chest to stay healthier and means less suctioning. We used to often get comments remarking on how pale William looked but now people comment on how well he's looking! He is sick a lot less because the feed is so much thicker making it harder for it to make its way back up.
Ultimately, like any parent, we always want to do our best for William. For me personally, giving William a blended diet felt like what I had to do to do my best for him. So far it has been worth it!
