Tube Feeding: Transitioning to a Blenderized Diet

We've been tube feeding our daughter for nearly two and a half years now, and our strategy from the beginning has been to feed her like a typical child. She never caught on to breastfeeding, but I still felt strongly about providing her with breast milk. Part of this is because I was planning to breastfeed during my pregnancy, but the bigger part is that her neonatologist stressed to me the importance of it for her as a micropreemie especially. He likened it to medicine for her tiny body. A pretty strong guilt trip, but it also gave me something to focus on that I could do for her when I felt otherwise helpless. So beginning four hours after her birth, I pumped regularly. I continued for thirteen months of exclusive pumping.

We eventually had to add a deep freezer in our basement.

Except for in the very beginning, my milk always had to be fortified with formula to increase the calories in order to make Olive grow. With preemies there is a huge emphasis on "catch-up growth" in order to catch up to your peers. I know now that every child is different and that your child may not catch up to their peers. And that's ok. Olive is in the less than first percentile for her weight, but she has always followed her own curve, which is all her pediatrician and I care about at this point. Healthy and tiny is fine by me. But we still did and do focus on trying to give her calorically dense food to encourage growth as it doesn't come easy to her.

Our own baby scale was a necessity to avoid weekly pediatrician visits.

We originally fortified with Human Milk Fortifier, made by Similac specifically for fortifying breast milk for premature babies. We did this for the first three months in the hospital and were sent home with a case that lasted for a few weeks. We were next instructed to switch to Neosure formula, but that made Olive projectile vomit almost immediately. We panicked and went back to the HMF, paying an exorbitant out-of-pocket cost as our insurance wouldn't cover it. Next, I stopped consuming dairy products and we switched to Alimentum, a hypoallergenic formula. This seemed to work and improve her vomiting. Her tube, however, was put in shortly thereafter, which seemed to increase her vomiting.

This is how Olive felt about solids. 

But breastmilk fortified with Alimentum is what we stuck with until Olive was one year old adjusted in April 2013 as breastmilk or formula is what is recommended for babies under a year old. In the meantime, we treated Olive as we would a "normal" eating baby.  We started offering her solids orally when she was around six months old adjusted. Unfortunately, she did not enjoy the solids or take any measurable amount. This did not deter us. Instead, we decided to start feeding her baby food through her tube. We started this around eight months old adjusted, and we would simply tube two tablespoons of food into her tummy at a time. We would also offer her the food on a spoon or to play with, but she was rarely interested.

April 2013

We offered her one new food for 3-5 days in a row just as you would do for an orally eating baby. With this process, we had a pretty extensive list of foods (about 35) that she had tried by April 2013 including fruits, vegetables, grains, and even some herbs and spices. We purchased all organic baby food, and most of it was in the pouches, which are especially convenient for tube feeding because they have a smooth consistency and our syringes fit right into the spout, making them easy to pull back and load. With no signs of any allergies, we were in a good place to start transitioning to a blenderized diet.

What is a blenderized diet? I can't say I had ever heard the term until I started to read about children like Olive who are tube fed long term. It came up a lot on message boards and in facebook groups. It is also known as "blended diet" or "homemade blended formula," but we've always referred to it as a blenderized diet or "BD." It is essentially real food. That we blend up with liquid in our blender to make it a smooth enough consistency to put in Olive's tube. For us, it is now 100% real food blended with whole milk, but it can take various forms for different people.  There's no one right way to do it, and you should obviously consult with your own medical team before starting it for yourself or your child.

No medical professional ever mentioned it to us, but Olive's pediatrician was incredibly supportive of the idea when we began to bring it up in the fall of 2012. And her feeding therapist not only knew about it, but she lent us a great book about it called the "Homemade Blended Formula Handbook." Our dietician was also very supportive of our plan.  Luckily we found a dietician in the fall of 2012 through our DME supplier.  DME is durable medical equipment, and we began using a DME supplier as soon as Olive came home from the hospital, for things like oxygen tanks and supplies, our apnea monitor and later a feeding pump and all of our tubes and feeding supplies.  I only learned from their website that they offered dietician services, but I'm so glad I found that because the local feeding clinic dietitians were neither well-versed in nor supportive of a BD.

In fact, blenderized diet is kind of on the fringe as far as tube feeding goes. The standard medical advice is to feed tube fed children (and adults) commercial formula. And it is hard to go against the status quo. We encountered doctors and dietitians who recommended against it. One dietician in particular, who worked with a gastroenterologist that we were considering switching to, gave us her reasons for not doing it, which included: 1) a risk of infection as homemade "formula" is not sterile; 2) a possible lack of micronutrients that commercial formulas provide; 3) the risk that the tube could become clogged from larger food particles; and 4) the fact that a BD is a lot of work for a caregiver. She instead told us flat out that our daughter should be on a toddler formula such as Pediasure or Peptamen. The first two ingredients of Pediasure are water and sugar. I questioned this. The dietician hesitated and told me that it is nutritionally complete and that is what they recommend. She didn't sound like she even believed herself.

Unfortunately, a lot of medical practices are ill informed about the benefits of BD, and commercial formula is big business in our country. Yet, there is in fact no research to support the assertion that commercial formula is superior to regular real food that a "typical" kid would eat. Of course formula has its place for those with allergies or special diets or those whom it works better for their family, but for us, we decided pretty early on that there was no reason Olive shouldn't receive real, nutritious food just like she would if she ate orally. In fact, she "eats" much healthier than she would if she was oral eating as she only gets organic, hormone-free whole foods with nothing processed or packed with salt, sugar or preservatives.

Blenderized diet filled syringes for Olive's meals.

The only item I agree with that the dietician listed as a con of the BD is that it's a lot of work. Because it is.  But I can say that in over a year and a half of feeding our child a BD she has never had an infection from it because the stomach itself is not sterile. There is no need for food to be sterile. We did clog the tube once...with a piece of black bean..but we easily dislodged it and blended it better the next time around. And as for micronutrients, what in the what?  Like a typical toddler gets enough selenium? Who knows. Nobody worries about that. In our minds, there is no way that Olive is any worse off than her peers as far as micronutrients go considering she gets a perfectly portioned and varied diet of healthy fats, fruits, vegetables, dairy and grains.

But yes, the work. It's a commitment. It requires a lot of planning and prepping.  If we're tired, we can't just order a pizza for the family.  We still have to make Olive's food. Because we make it all fresh. And we make a separate meal for breakfast, lunch and dinner, trying again to simulate a "typical" diet of an oral eater.  We probably make more work for ourselves than is necessary as lots of people have success with just blending whatever the rest of the family is having or with making large batches and freezing them. One way is not necessarily better than any other way, but we are pretty set in how we do it after some trial and error. And I really do mean error. There is a learning curve to all new skills, but I have to say that tube feeding is not at all intuitive. And we have never met a doctor who can give us practical tube feeding advice.  They've never done it.  Or they did it once in medical school. On an adult. Tube feeding kids is a different beast, and you learn as you go.  There is no other option. The greatest teachers are those that have come before us. Thank goodness for the internet because advice from other parents has been absolutely invaluable.

A tube feeding mishap resulting in food everywhere.

From them we learned that the first thing we needed was a high power blender. We started with a Blendtec and now have a Vitamix, thanks to a mishap with the aforementioned Blendtec that involved a small child pulling a very expensive blender off the counter and breaking it. There may have been tears. From me. We also learned that it's important to add free water to prime a child's tummy before receiving a tube fed meal. We currently give Olive about 60 ml of water about thirty minutes before a meal, and it has helped immensely with her volume tolerance. We also learned lots of tips for getting air out of the blended food like running the blender on low for a few minutes after it's blended. And the best tip was to purchase o-ring syringes online instead of using the ones provided to us by our medical supplier. They are unbelievably superior. We actually purchased them from a squirrel rehabilitation supply website, which sounds very odd. But if anything, we have learned to improvise over the past three years.

Aside from those tips, we also needed somewhere to start as far as recipes.  Luckily our dietician has a lot of experience with BD, and she made us a detailed list of how many calories Olive should be getting daily from each food group and specific examples of items from each group.  We took that and ran with it, making a base recipe for all of Olive's meals that satisfies all of her nutritional requirements.

In April 2013, we began to transition Olive to a blenderized diet. We started by replacing one meal at a time, as our dietician gave us plans for 25% BD, 50% BD, 75% BD and 100% BD. We also transitioned to whole milk, removing the need for the Alimentum that we had used to fortify breastmilk. By the end of June 2013 Olive was completely switched over to a blenderized diet with three meals and two snacks of real food each day.  The hardest part was figuring out the volume that she could handle.  She is very volume sensitive so we started small, and we started slow, with feeds taking nearly an hour. But that is the only way she could keep it in.  It was frustrating trying to find what worked for her. We had to tweak a lot of things. For example, we discovered by trial and error that Olive couldn't handle very much fat at breakfast. We made adjustments as we went, and after three months of BD we were absolutely convinced of its benefits.

Olive has one speed...go.

On a blenderized diet, Olive's vomiting is so much better.  She went from vomiting 6-8 times a day to about once a day and then about once every other day. Currently, she handles her food amazingly well.  She almost never throws up during feeds anymore, which is such an incredible change. Unfortunately she does still vomit regularly, but it is caused by her anxiety, which often presents itself when we go somewhere unfamiliar. She also has an incredible amount of energy. The girl runs circles around me all day and is nonstop action.  We are convinced her energy comes from her super healthy diet. She "eats" way better than we do, and it makes her a happy and healthy toddler.  We have chosen to feed her almost exclusively organic (with the exception of the Grape Nuts which are high calorie) and all of her dairy and meat is hormone/antibiotic free.  It's an expensive way to eat, but we think it's worth it as Olive is absolutely thriving on her diet.

A typical menu for Olive includes:

BREAKFAST (approximately 150 ml)

• 90 ml high calorie fruit puree (stage 1/2 baby foods in pouches like banana, blueberry banana, orange banana, etc..)
• 2 tablespoons ground Grape Nuts
• 15 ml whole milk
• 3 tablespoons yogurt
• 1 teaspoon olive oil
• 1 vitamin D drop

MORNING SNACK

• 55 ml YoToddler yogurt mixed with a small amount of peanut butter (1-2 tsps)

BOTTLE (some of which she takes orally; the rest is tubed)

• 200 ml whole milk 

LUNCH/DINNER (two separate meals of 145 ml; recipe makes one meal)

• 4 teaspoons oil (usually 2 flax seed, 2 olive oil)
• 1/4 teaspoon iodized salt
• chicken cube or 3 tablespoons beans
• 1-2 veggie cubes
• 2/3 cup cooked grain 
• 60-75 ml whole milk
• probiotic packet

Our recipes are really basic, and we try to vary the fruits, veggies and beans often.  She gets one orange vegetable and one dark green vegetable daily per her dietician's advice. To make it easy for us, we make large batches of chicken and vegetable purees that we freeze in ice cube trays.  We then take four cubes out of the freezer every morning to use for that day's lunch and dinner.  We also try to choose higher calorie items because she is so volume sensitive, and our blends need to be calorically dense to help her grow.  With this plan, Olive gets about 800 calories a day. She is small, but she is growing, which is one of the most important things for us. We still regularly weigh her just to make sure because it's really hard with a tube fed child to know exactly how much they need to grow. Many children need more calories on a BD than they do on commercial formula. 

With the help of our feeding therapist, Olive's meals are now down to about 20 minutes.  She gets 145 ml that we put in her tube.  40 ml every 5 minutes followed by 10 ml of water to flush any excess food out of her tube.  We feel like she has about as close to a typical schedule and diet as a tube fed kid can have, which makes it all worth it to us as we envision the day when she moves away from tube feedings to orally eating.

First day of preschool. October 2014.

Helpful Resources: 

BOOKS:
"Complete Tubefeeding: Everything you need to know about tubefeeding, tube nutrition, and blended diets" by Eric O'Gorman
"Homemade Blended Formula Handbook" by Marsha Dunn Klein

WEBSITES/FACEBOOK GROUPS:
Real Food for Real People
Feeding Tube Awareness Foundation
Blenderized Food for Tubies Facebook Group