Innholdsfortegnelse for Issue 1 i The Blend Magazine

Disclaimer This resource is for general information and support purposes only. The information is not intended as a substitute for professional medical advice and if you have questions or concerns regarding your health or that of your child, please seek assistance from a qualified and licensed health professional. While every effort is made to ensure that the information contained in this book is accurate and appropriate, The Blend creators make no warranty of any kind, expressed or implied, and are not liable for the accuracy, currency, errors or omissions in the information contained here. All access to, and use of, the information is at the reader’s discretion and risk. Credits The Blend is written and edited by Melanie Dimmitt and designed by Edie Swan. The cover photo is by Kate…

Whether it be for ourselves or our child, the prospect of eating through a tube can be, well, hard to swallow. It certainly was for me. As a parent to a kid with a profound physical disability, who already needs support to do so much, the new order of ‘nil by mouth’ hit with the force of a sledgehammer. Here was yet another part of life that my son wouldn’t be partaking in. Be it Christmas stuffing, a sanga on the run or hot chips at the pool, food underpins life’s most special - and taken-forgranted, ordinary - moments. Eating food is a human right, for crying out loud (which I was doing quite a lot of in the wake of Arlo’s damning barium swallow test). Once again, our kid…

This is one that I make often. It’s also the one I give to friends when they have a hospital stay, stress or anything where I know they need a meal. It’s so healthy and nutritious. It’s also vegan and gluten-free so it covers all the dietary basics. Sarah Serves 6 Ingredients + 2 tbsp olive oil + 2 red onions+ 3 tbsp rogan josh paste+ 1 fresh red chilli+ 3cm piece of ginger+ 1 bunch of fresh coriander+ 3 sweet potatoes+ 400g tin chickpeas+ 8 ripe tomatoes or 400g tin chopped tomatoes+ 400ml tin light coconut milk+ 400g pre-washed spinach Method 1. Heat 2 tablespoons of oil in a large saucepan over a medium heat. 2. Peel, finely slice and add the onion along with the curry paste, mix…

For a multitude of reasons, whether short-term or long-term, there are babies, children and adults whose bodies need to access their food and nutrients via a tube. Sometimes via the nose or directly inserted into the stomach or bowel. The simple fact is that these tubes allow people to access food and nutrients which keep them alive. But while that may be simple, this daily reality can often be fraught with isolation, shame and fear. In working with the SUCCEED Child Feeding Alliance, I was invited into the homes of several families with ‘tubie kids’. I spoke at length with the mothers and was struck by the common threads which embodied their stories. The isolation they felt in the initial weeks and months of tube-feeding their kids. With no social…

Myth 1 “Homemade blended food creates a higher risk of tube blockage.” Typical reasons for tube blockages include: + Infrequent water flushes + Improper crushing of medications + Slow feed rates The first two can be easily prevented with careful regular water flushing, correct crushing of medications, and flushing between each medication. In terms of slow feed rates, this is a risk with homemade blended tube-feed formulas, but it can be prevented with a high-quality blender and adequate blending time to ensure particle sizes are as small as those in ketchup or a smoothie. Myth 2 “Homemade blended food creates a higher risk of infection from food contamination.” If the following rules are followed, using homemade blended tube-feed puts you at no higher risk than eating homecooked food through your…

The real deal Why are blenderised feeds a point of interest for you? As a gastroenterology dietitian, I see a lot of kids with reflux, constipation, vomiting and other gastrointestinal issues. I find that for many kids who transition to tube-feeds, their reflux and lower gastrointestinal symptoms can be exacerbated by commercial formula. There is evidence to support a blenderised diet reducing symptoms of reflux, vomiting, retching and diarrhoea - so that’s why I am interested in it. How restricted are you when it comes to recommending blended feeds for children? I am bound by my national regulatory body which, at the moment, doesn’t have clear recommendations for dietitians to use and promote blenderised tube-feeding. For this reason, I don’t actively recommend blends. It’s usually either initiated by the parent,…

1. Usually it’s important to make blends that are calorie dense. I like to define this as containing at least one calorie per millilitre. If this sounds complicated, don’t worry. All it really means is that you want to make blends that have lots of calories (energy) in a reasonable volume. So, when you are thinking about foods to blend together, make sure that you are picking foods that will make for a hearty blend. You can’t go wrong with ingredients like cooked grains, root vegetables, avocado, eggs, tender meat or fish, beans, lentils, oils, nut butter and calorie-containing fluids like milk or milk alternatives. If you want, you could ask your healthcare team to provide calorie targets and you could use a nutrition app to see if your blends…

I noticed a comment on one of my group social media platforms that went as follows: ‘Hey guys! I really miss the taste of bacon; does anyone know if it will blend correctly to where I can just drink it or know of anything that is easily blend-able that tastes like bacon?’ Someone helpfully suggested they should just lick a Pringle. I thought, we can do better than that! - Yvonne Ingredients + 6 rashers of bacon Method 1. Take 6 rashers of bacon and grill them on high until crispy. 2. Let the rashers cool and then grind them to a powder in a coffee/spice grinder. 3. Store in an airtight jar in the fridge. Add to soups (try cauliflower, potato and leek), casseroles, scrambled eggs, sauces and pizza…

This resource is designed to inform, comfort and inspire people who are new to tube-feeding. It offers a glimpse into the lives of individuals and families who are doing this thing and making it their own. It’s something that, I hope, will help you land more softly into this space.On these pages you’ll find parents who are tube-feeding their kids, as well as teens and adults who’ve previously, or are currently, tube-fed. Their stories lift the lid on this way of eating - and share a taste of just how creatively our most fundamental needs can be met. You’ll also find interviews with business owners, dietitians and medical professionals at the forefront of this growing sector, recipes to suit and satiate a broad range of appetites and features exploring the…

My brave little boy,one day you will know,that you were fed through a tube,that it helped you to grow. But it didn’t define you,it didn’t make you any less.In fact quite the opposite,it helped you be your best. With that pesky little tubeyou were able to thrive.So happy, so bright,it helped you survive. It was a part of you, my boy,that I will never forget.Because, despite your struggles,you charmed everyone you met. There’s something to be saidfor your bravery, my dear.You’ve taught me so muchin your short time here. You are absolutely perfectin every single way,You teach me to be fearlesswith every passing day. I want you to rememberthat you are brighter than the sun.You are a warrior, my boy,I love you darling one. ♡ Jump to page 46 to…

Bright as a button How did tube-feeding come into your life? When Callum was born we noticed that he had an issue with his breathing and had nine weeks when we couldn’t get anyone to take us seriously. At our third private paediatrician appointment, we were admitted within 15 minutes of stepping foot in her office. Three days later Callum had airway surgery and we found out he was aspirating, as well. So from nine weeks old he was tube-fed. We started on an NG-tube and then we moved to an NJ-tube, because he was refluxing, and then we went to a G-J-tube, which caused some major complications. We have had quite a roller-coaster ride with Callum’s tubes. He had a stomach ulcer that nobody knew about, and the balloon…

From one PEG mother to another Firstly, thank you for saving our lives. What gave you the confidence to tell me to try blends for my kid? I was a bit brutal saying it blankly but the amount of people I know who have persisted and persisted with formula - I persisted with formula for a long time, with Sarah and it just didn’t work. It was a huge relief when we changed over. I was scared at first because I had dietitians telling me I had to get the recipe perfect, but after trialling different formulas and not getting on top of Sarah’s vomiting, I started just blending our ‘normal’ meals and she improved straight away. It’s very much trial and error at first, but it’s possible. Tell me…

Ingredients + 1 cup frozen fruit (the more colours the better)+ 1 cup of milk (we use almond)+ A blob of some yoghurt (we use almond yoghurt) Method 1. Kids put ingredients into the blender-make sure they touch and smell the fruit pieces and describe the colours. 2. Mum adds milk and a blob of yogurt. 3. Kids hide while mum blends the mix (this is the noisy part). 4. Mum puts the mix into three cups. 5. Kids taste smoothie. 6. Whatever isn’t consumed goes through the G-tube.…

For those of us approaching a feeding tube with trepidation, it may be heartening to know that, 80 years ago, ‘rectal feeds’ were all the rage. Up until the 1940s, enteral nutrition was delivered via enema - in its earliest form, it’s believed the ancient Greeks and Egyptians used animal bladders to achieve this - but the surgically placed feeding tubes of today have their roots in the mid-to-late 1800s. Nasogastric feeding tubes debuted more than two centuries earlier when, in 1617, Italian surgeon Girolamo Fabrici d'Acquapendente proposed treating tetanus with a ‘small, curved silver cannula, through which we introduce the food in liquid form directly into the palate, passing through the nostrils’. However, old mate Girolamo might be peeved to know that US physician Abraham Louis Levin, inventor of…

This soup is special to me because I’m Palestinian-Australian and believe that food is such a huge part of our cultures and our identities. When we strip away someone’s right to their cultural food or their mother’s homecooked meal, it can only do more harm than good. Lentils are a rich source of protein and B vitamins, thus making for a brilliantly nourishing dish on a meat-free Monday. - Lina Serves: 4  Preparation time: 5 minutes  Cooking time: 30 minutes  Nutritional info: 450 calories, 18g protein Ingredients + 4 tbsp olive oil+ 1 onion, chopped+ 1 carrot, chopped and steamed+ ½ cup vegetable broth+ 1 tsp ground cumin+ ½ tsp turmeric+ 1 cup red split lentils, boiled from raw or canned+ 1 tsp salt Method Blend all ingredients together. Add…

This is a good one to test whether blenderised feeds are going to work for your child and family, because you don’t have to cook anything. - Kate Ingredients + ½ banana+ ½ Weet-Bix+ 100ml almond milk+ 3 tbsp Greek yoghurt (full fat)+ 1 heaped tsp of peanut or almond butter (smooth, non grainy) Method Mix together and blend in a high-quality blender. Add almond milk to get the right consistency. The nutritional breakdown is as follows (which includes 100ml almond milk). Per serve: 220 calories, 6g protein, 25g carbs, 10g fat, 2.5g fibre, 180mg calcium.…

Model behaviour You’re twice a tubie. Are you happy to talk about when you first started tube-feeding? Sure. So when I was eight, I had anorexia nervosa. I got really unwell and was basically on death’s door. My doctors had to eventually say, ‘sorry, she’s got to come in and start tube-feeding, otherwise this is going to end badly’. I spent most of 2005 in the Royal Children’s Hospital and dealt with 20 nasogastric tubes in that time, which was so traumatic. It left me with PTSD afterwards, because they wouldn’t sedate me or even give me Valium when it was going in. After I gained weight I was able to come off tube-feeds and come out of hospital, so I thought that whole part of my life was over.…

Aspiration means accidentally inhaling liquid or food into the windpipe and/or lungs. Blenderised food or a blenderised diet is real food, blended with liquid and put through a feeding tube. Bolus feeding means large amounts of formula delivered through the tube. Continuous feeding means feeding small amounts of formula constantly throughout the day (or night) without interruption. Enteral feeding is a method of supplying nutrients directly into the gastrointestinal tract. A feeding pump is a small machine, plug-in or battery powered, that automatically controls the amount of formula being delivered through the feeding tube. Gastroesophageal reflux or acid reflux occurs when stomach acid leaks from the stomach and moves up into the oesophagus. A gastrostomy is a surgical opening (stoma) through the skin into the stomach. A gastrostomy (G) tube…

A whole(some) new world How did tube-feeding come into your life? Lewis had a stroke when he was three and during his recovery we were on and off an NG-tube. Then he started eating, but when he was at school he got diagnosed with ADHD and we put him on ADHD medication that suppressed his appetite. Lewis also struggles to swallow and chew - but we didn’t know this for a long time. We had gone through a year of intensive feeding therapy that we had paid for ourselves - nearly $10,000 - and it was just so hard. When I was told Lewis needed to have a PEG permanently inserted, I felt like I’d failed, as a parent, to feed my child. It was the worst feeling I’ve ever…

Little miracles How did tube-feeding first come into your life? Jack was born prematurely at 34 weeks. He was too little to feed by bottle or breast, so he had a tube for the first two weeks of his life. We weaned from the tube and he was then fully breastfed for the first four-ish months of his life. But during that time he had frequent chest infections and we were in hospital every couple of weeks. We found out he was severely aspirating - a lot of the milk was going into his lungs - and that explained why he was so unwell. So at five months, he had a nasogastric tube put in and we were told to stop breastfeeding. We are still tube-feeding now that Jack’s two…

Fried rice used to be Sarah’s favourite takeaway meal. When we found out she is allergic to rice, we started making cauliflower fried rice at home. - Eron Ingredients + ​2 carrots+ 1 stick of celery+ 100g corn kernels+ 200g peas+ 20g olive oil (or sesame oil)+ ½ onion+ 2 garlic cloves+ 4-6 rindless bacon rashers+ 350g cauliflower rice+ 950ml water+ 2 eggs (lightly beaten)+ 500g chicken Method 1. Crush the garlic. 2. Chop the carrots, celery, onion, chicken and bacon into small cubes. 3. Place oil, garlic, onion and chicken in a pan, saute for 5 minutes. 4. Add bacon, saute for a further 5 minutes. 5. Add all vegetables and cauliflower rice and cook for approximately 20 minutes until cooked through. 6. Before removing from the tray, pour…

A blendable feast “As I listened to patients of mine who are tube-fed, I realised that food is a love language… That is when I got interested in homemade blended feeds.” Tell me a bit about who you are and the work that you do. I’m an accredited practising dietitian. Through working in several hospitals, for a decade now, I’ve learned that people want to be treated as humans, not as their condition or disease. People want to feel heard and that their choice of nutrition intervention is seriously taken into account. No one wants to feel like they are part of the ‘one size fits all’ equation that is sometimes applied in therapy and treatment. This is particularly true in nutrition; an individualised nutrition approach is our duty of…

Fed is best As a paediatrician at a multidisciplinary paediatric feeding clinic, what do you do for your patients and their families? A multidisciplinary feeding clinic has a speech pathologist and a dietitian, and sometimes - but not always - a paediatrician or other doctor. I see our main role as helping solve mealtime problems for children who are having trouble feeding. We’re always asking: What’s going on? Why are things hard? Why aren’t things getting better? The wonderful and challenging thing about feeding is that it mostly happens at home, not in hospital. So if we don’t understand what’s happening in the house, we can’t figure out how to help. Families and carers are the most important people when it comes to feeding children. I believe families, like all…

Life unplugged How did tube-feeding come into your life? I’d resigned from my job, packed up my life and moved from Australia to Vietnam. I was about to start working on Phu Quoc island running a hospitality business college and I had a really bad sore throat. I just put it down to stress, but I noticed I was starting to live on really strong painkillers. I thought, ‘oh shit, something’s not right here’. I returned to Australia and, as it turned out, I had a squamous carcinoma, which is a very large tumor, on my left tonsil. They took out that tumor, about 30-40 lymph nodes, both my tonsils and a third of my tongue. That’s why I ended up with a PEG. How did you respond to this…

An Esky wine bottle cooler fits feeds perfectly and hangs over chairs and wheelchairs. I use a salad spinner to clean and start drying my syringes. For mixing in the thickener for bottle feeds once you are weaning, use a Kmart electric whisk to make your bottles lump free! Those super-cheap linking chain toys are great for hanging a bottle from the pram or handle above the car window. Get the good-brand adhesive remover that you can only order from a medical supply shop, the stuff from the chemist is AWFUL! Also use scissors like they have the hospital that actually cut tape. We bought a plug adapter for the car so we can plug in the pump in the car. So many times, we forgot to charge it up…