Category Archives: Tubie Talk

For individuals with g-tubes

Another Testimonial

Testimonials, , , , ,

Blenderized RN. I love this Facebook group! So much support and encouragement for anyone interested in getting their loved one with a g-tube off formula and on to what the rest of us eat…FOOD! With every testimonial comes the oppurtunity to help the Healthcare system know that blenderized diets for people with gastric tubes works. Here is one such testimony from the group:

Our son’s check up today was absolute 360 from the clinic visit he had one year ago: he jumped from ~10-20th percentile to ~50-60th for height and weight, went from vomiting multiple times a week to rarely in a month, and instead of his doctors recommending more fluids to get his numbers down and more calories to get his growth up (both usually resulting in tolerance issues) they said everything is going so great; don’t change anything! The cherry on top was when the head of his team (nephrology) said: “We should really be encouraging families to start a blended diet sooner.” 👏🏻🙌🏻

One year ago, 100% of our son’s nutrition came from a formula. Today, all of his daily intake is real food. He still gets an overnight pump of a water/formula mix, and that balance works for him and our family. For anyone on the fence, give it a try. You don’t have to go all in right away. Every little bit can make a positive difference. It seems overwhelming but soon, like everything else, it will be second nature.

We had nothing to lose, and everything to gain. And gain, and gain, and gain he did!!! 💪🏻🍅🍊🍋🍏🍆🍗

Meet Sawyer

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This testimonial is 1 of hundreds (if not thousands) listed in the Facebook group Blenderized RN. I only share these testimonials with the the permission of the original poster. Each one has a different background, diagnosis and journey but they all say the same thing…BLENDING REAL FOOD WORKS FOR TUBIES!

  • Before
  • After

Just want to give our “testimony” about blended foods, if anyone is hesitant about it. Sorry for the length.
I was super hesitant myself but my wonderful friend Kristen Nichole Leverett helped me SO MUCH.
My daughter is 2. She was born weighing 2 pounds 6 oz in May 2017. She’s had two open heart surgeries and her g tube placement surgery.
She was on Elecare as an infant and then switched to Elecare JR at around 18 months old. She was throwing up constantly. Could barely tolerate 100 ml of Elecare JR ran over an hour through our pump. Finally this past June, I had had enough and knew that Kristen blended real food for her son, so I reached out to her. She talked me through it all for weeks until I figured out what worked for us. We started blending that day and we haven’t looked back to formula at all.
On formula, she wasn’t walking, her hair was so short, she could barely fit in infant shoes, and was constantly vomiting like I mentioned.
Now, 4 months later, she’s almost running everywhere, her hair is growing, she wear a size 5-6 in toddler shoes, and I can’t remember the last time she threw up. She’s also blossoming mentally! She knows her ABCs, can count to 15, and knows most of her colors.
I’m so thankful for this group.
The first picture was sometime in June. She was scooting on her bottom to get around and was wearing walking shoes (size 2 in infants). The second picture was about an hour ago while playing soccer and throwing balls with her brother & me outside (the shoes in this picture are a size 6).

Transition Charts

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The weight and bowel movement chart is vital for transitioning babies, toddlers and children because their bodies respond differently to food and formula differently. For Matthew, because of his Hirschsprung’s Disease diagnosis, he has slow motility. The chart has helped me track how well his current regimen is working. Some babies and toddlers will have difficulty maintaining their weight on a blended diet. That is because a lot of the calories in formula is sugar which is easily stored while whole foods tend to burn as more efficient fuel for the body so more food is necessary. An example would be how much easier it is to gain weight drinking milk shakes as apposed to a balanced diet. The other reason why this chart is vital is for bowel management. Put simply, what goes in must come out. How it comes out will tell how your child is handling certain foods. It will allow you to adjust fiber and water content as you go along. Without the chart it is a shot in the dark. It will be hard to track if your child is gaining, maintaining or losing weight on the new diet as well as what foods are causing constipation. In a nut shell, using this chart will help you see any changes from day to day and show the doctors a your transitioning progress.

Meet Raiden

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Working with Raiden’s mom was an amazing experience. She was highly motivated which was crucial in taking on a blended diet for Raiden. A blenderized diet takes time and commitment and we were working together with 3000 mile and 2 time zones in between us. The fact that we both owned a Vitamix made it easier for me to create a blend for her and have her repeat it seamlessly step by step. My joy comes from seeing little ones with g-tubes grow and thrive on real food and helping other families experience the same success. So, without further ado, here’s Raiden’s story:

Raiden at 1 year

Brechae and Raiden’s Testimonial:

My son Raiden has been tube fed since he was 4 months old. He was fed breast milk fortified with formula for extra calories. As he got closer to a year old and my milk supply began to decrease I sought out his options for nutrition. I spoke to his G.I. and he wanted to put him on Pediatric Compleat. I’m the kind of person who does her research, especially with regard to my child, so I looked up the formula. Upon reading the ingredient list I quickly discovered that the product was mostly sugar. I didn’t want that for him. I remembered reading about a blended diet in a feeding tube group on Facebook. At the time I had no idea what it was but I wanted to learn more. I was directed to “Blenderized RN” group on Facebook and that is where I met Tina!

We bonded over both having tubie sons who also have Down syndrome. She helped/taught me to slowly start the transition from fortified breast milk to real food through his tube. Raiden doesn’t have dietary restrictions/sensitivities or G.I. issues. His aversion to food is mostly sensory so I was able to trial all kinds of baby food, baby cereal, eggs, whole milk, etc. with no problem. Once we learned what he tolerated, Tina created a breakfast blend just for Raiden (Raiden’s Breakfast Blend)! It had oatmeal, eggs, an apple and whole milk. It was my go to meal and gave me the confidence to create blends for him on my own with my Vitamix.

Initially he was fed via Infinity pump and could only handle small amounts at a time. I was worried it would always take hours and hours of him being connected to his feeding pump to get him to grow. Tina assured me that based on his medical history we would one day be able to bolus feed via syringe and that he would be able to handle more volume and she was right! When I started blending Raiden was 18lbs. Now he is 27 lbs! We are two years into our blenderized diet journey and I can honestly say that it has been one of the best decisions I’ve made for my son. Tina’s wisdom and guidance along the way has been such a blessing!

Raiden at 33 months

Meet Zoe

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I met Tina in 2018 not long after my family and I had relocated from Washington to Southern California. My daughter Zoe has a rare syndrome and is g-tube fed. When we moved, Zoe was 100% formula fed and as we later found out, she was not tolerating it well. Tina was invaluable to me as I decided to change Zoe’s diet to blended real foods. She is always so encouraging and knowledgeable. So readily available to answer my texts or calls about calorie counts, g-tube tricks, blended recipes or really just about anything! She has met with me, taken me to the grocery store to show me what to purchase and how to prepare it, she is always willing to help.  It was daunting for me to start this journey, because Zoe has so many medical issues and allergies, but Tina is always so encouraging and reassuring that I can do this! She truly has a heart to help other families and a passion to keep our fragile kiddos healthy and thriving. I’m so blessed to know her!Brooke Maxwell

The Maxwell Family
Zoe Maxwell

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Stained Containers

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Before
Before

Anyone’s Vitamix container looking like the first two pictures?  Don’t worry.  It’s not dangerous.  I blend lots of fruits and leafy greens and I only recently started having this problem.  Normally this is my routine after blending:

  • Rinse the container thoroughly
  • Fill 1/2 way with warm water and 2 drops of dish soap
  • Run the machine on high for 1 minute
  • Rinse and dry upside down in a dish rack

The container can be put into the dishwasher but, I use mine so much that it I need it ready at all times and you can’t beat a 1 minute wash cycle.  So why is my container looking like this now?  I began using peppermint and chamomile tea as the base for Matthew’s green smoothie instead of plain water.  The film is a build up of oils and minerals from the tea. So, now when the container starts looking like that I:

  1. Add 1/2 cup of white vinegar for 32oz containers and 1 cup for 64oz containers.
  2. Add hot water until the container is half full.
  3. Turn the machine on with it set to Variable 1.
  4. Quickly increase the speed to Variable 10, then to High.
  5. Blend for 15 seconds to mix the water and vinegar.
  6. Let sit for about 15 minutes.
  7. Pour the vinegar and water solution over a clean sponge or dish cloth then dump the rest down the sink.  Use the sponge or dishcloth to clean any tough stains that might be left behind.
  8. Rinse the container then refill half way with fresh water.
  9. Repeat steps 3-5.
  10. Empty and let stand upside down to dry completely.
Clean Container (2)
Clean Vitamix Container

If you have let your container build up a thick film or if you are a stickler like me, you may want to put a little baking soda on the cloth or sponge and give the inside another go.  This is totally optional.  It you are on a tight time schedule, this step is not necessary.  FYI, if you are thinking of short cutting by using the baking soda and vinegar from the beginning, DON’T!  Remember that active volcano replica you made back in grade school?  No?  Ok, I may be dating myself.  If you do you will end up with:

Ooops!
Oops!

What is Carrageenan?

Helpful Hints, Know Your Super Foods, Specialized Diets, , , , , , , ,

what-is-carrageenan

So I just got through having a very interesting conversation with a fellow tubie mom.  She was looking for advice because her son had suddenly been vomiting his morning blends.  At first she thought it might be a cold but no other symptoms arose.  He was tolerating broth and baby food so it did not sound like a flu bug.  Then she mentioned a change in the coconut milk she had been buying for her blends.  She went from using Silk coconut milk to using Simple Truth coconut milk.  She questioned whether or not it might be a particular additive in the Simple Truth that was not in the Silk.  That additive was Carrageenen.  Since I make my milks fresh, I hadn’t thought about additives and the side effects they might have. I vaguely remember hearing the name but had no idea what it was so I hung up the phone and went looking.

After clicking on the first website that spoke about it and reading the contents, a light bulb went off.  There was a quote from an article that made me feel that this mom had hit the nail on the head:

“Although derived from a natural source, carrageenan appears to be particularly destructive to the digestive system, triggering an immune response similar to that your body has when invaded by pathogens like Salmonella. The result: “Carrageenan predictably causes inflammation, which can lead to ulcerations and bleeding,” explains veteran carrageenan researcher Joanne Tobacman, MD, associate professor of clinical medicine at the University of Illinois School of Medicine at Chicago. She says the food ingredient irritates by activating an immune response that dials up inflammation. Her previous work showed a concerning connection between carrageenan and gastrointestinal cancer in lab animals, and she’s involved with ongoing research funded through the National Institutes of Health that is investigating carrageenan’s effect on ulcerative colitis and other diseases like diabetes.”

And what do pathogens like Salmonella trigger the body to do?  You guessed it.  Vomit.  Unfortunately a lot of organic foods add these ingredients to stabilize their products and add shelf life.  So it could be that or a number of different additives that could be causing this little tubie’s tummy troubles.  The best answer is to go back to what was working.  If the vomiting stops, you’ve at least solved the immediate problem.  Then, keep a list of ingredients of the problem item in a file.  If a similar problem arises from another product compare the ingredients to see what they have in common.   Then research the side effects of those ingredients so that you can narrow down the list culprits.

It is best, whenever possible to make your own milks.  That way you know exactly what is in it and what, if anything, needs to be removed.  It is also much more cost effective.  I do understand that not everyone has the time to do this.  But, if you are cooking and/or blending for someone on a specialized diet or has multiple allergies/sensitivities, it is well worth the time and effort.

If you are interested in reading more about Carrageenan this article contains a lot of interesting information.

The Poopinator Plus

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Matthew did very well on the Poopinator for a time.  Then slowly it stopped working and he began backing up again.  We had to put him back on Miralax, added Lactulose, Senna Plus, Enemeez and eventually the Peristeen pump.  Each addition brought some relief for a time but then stopped working.  He ended up back in the hospital for yet another clean out in October and to complete some much needed testing.  After a Sitz Marker Study, we came to the conclusion that there was no specific areas of colonic inertia .  His infectious Disease doctor highly suspects the backing up of his bowels was the cause of the g-tube stoma infection and the GI doctors are suggesting an Apendicostomy.

So here we are caught between a rock and a hard place.  Matt eats most of his blends by mouth but gets meds, extra water, the Poopinator and an overnight feeding of green smoothie.  Because of issues with his immune system, having an Appendicostomy done most likely would increase his chances of  infection.  On the other hand, after 16 years of major GI issues, I can’t see how I could maintain his nutrition and medication regimen without the g-tube.

So now I am on a mission.  Delay or completely avoid another surgery.  He has been drinking a blend throughout the day that contains hemp milk and it seems to bring him some relief.  Then it came to me:  Why not give him a straight shot of it with The Poopinator?  It might have a better effect that way.

Ingredients:

  • 4oz of the original recipe or any combination of the foods listed in The Poopinator
  • 1oz of hemp milk or kefir

Directions:  Warm the Poopinator THEN add the hemp milk or kefir.  I have found that warming the Poopinator Plus in the microwave causes the hemp milk to clump.  That can cause an extension tube to clog. I have also noted that heating hemp milk in a recipe causes it to thicken. Also, if you are using kefir, you will want to add it after the mixture has been warmed to avoid killing off the good bacteria.  Give as a bolus at the fastest rate that is tolerated.  Flush with at least 10cc of water.  If the volume is too high, reduce the solids before reducing the hemp milk until a tolerable volume is reached.

Please remember this:  Medication and/or surgical intervention is not a failure on your part (somehow I think I’m talking to myself here).  The goal is to do whatever it takes to give our loved one(s) the best quality of life possible.  Blended whole foods is by far the best choice over formulas but sometimes it’s just not enough.  Hang in there and don’t quit!

Blend Cooler

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One of the objections health professionals have for not using home blended meals is food-born illnesses. Though they are justifiably concerned, it need not be a road block to good nutrition.  Individuals who must or choose to use a feeding pump don’t have to be excluded from enjoying the benefits of a whole food blenderized diet.  Where there is a will, there’s a way.

That being said, many of us may have some idea about what proper food storage is but not have the whole picture.  So I took a look at what the FDA had to say.  Even though it was a confirmation, it felt good to see it in writing.  When it comes to blends, I don’t keep them in the refrigerator for more than 48 hours.  That’s why I freeze in small portions.

Still not convinced?  Take this scenario, for instance.  You have to go to work or school and you choose to bring your lunch.  Do you get to your lunch break and toss your nutritious lunch in the trash?  No?  Why not?  Because it’s been in your lunch box with an ice pack all morning, you say?  Exactly!  We don’t think twice about for those that eat orally.  So, when I was faced with the same issues, here’s what I came up with:

 

  1. Find a lunch box that will fit your feeding bag.
  2. Cut a whole in the top of  it to thread the loop through so that you can hang it on the IV pole.
  3. Cut a whole in left side to allow the tube to exit and connect to the pump.
  4. Add Bag filled with the feeding and ice packs front and back.
  5. Zip up the lunch box and start you feed.

It is best to start with a cold blend if you can-by.  That way the food stays fresher longer.  Depending on how long the feeding runs, you may need to replace your ice packs.

If your pump came with a mini backpack,  you may use it but I had a hard time fitting ice packs in with the feeding bag.  If anyone reading this has figured it out, feel free to add your idea to my comment section.  If you need something more portable, you can get a regular backpack that has sections to hold the lunch box and the pump so the tubing doesn’t get kinked.  Nowadays they usually have an opening for headphone wire.  If not, adapt it yourself.

At first I was afraid to do this thinking the blend would upset Matt’s stomach because it was too cold.  Then I realized that, by the time the food got to the extension tube, it was room temperature.  Besides, we eat cold food all the time without even a thought.  He as not had any issues.  As with anything you do with your tubie, when you try something new, watch them closely.  Look for signs of discomfort and stop the feed if there are any.

I hope, pray and dream of the day when manufacturers of feeding pumps get on board with those of us who choose food over formula.

Another Testimonial

Testimonials, You are Not Alone, ,

Ship
Us verses the Healthcare System

I got a message from a dear friend today.  I say friend but she’s more of a sister to me.  So many times I have called on her for prayer and support.  So many times she has been there for me.  Being an amazing NICU nurse is a bonus.  I can only imagine how the parents of the sickest of babies feel when their precious angels are in her care.  She has the uncanny ability to know when I am hurting even when no one else does.  Her looks and hugs speak volumes while her carefully chosen words are condensed libraries.  In my experience, she is a rare gem… A medical professional who gets it.  In the 25 years that I worked in the medical field I got to see first hand those who stand on both sides of that fence.

But now, as a parent of a medically complicated child with special needs,  I see it from the other side of the desk.  I understand on a deeper level the frustration expressed by the patients I dealt with.  Much of my time now is spent fighting a system that is caught up in codes and protocol to the demise of common sense…Fighting for what is best for my child. Thankfully,  Matt has a great group of doctors who listen and are open to my input about his care and are just as frustrated as I am when we hit a road block.  Many of you who will read this are not so fortunate.  My heart goes out to you but I am here to encourage you not to give up and not to give in.

So when her simple message read, “Sound familiar?” I knew I had to stop and read the story she had tagged me with.  As I read through “Kate’s Story” I couldn’t help but feeling it could have just as well read “Matt’s Story” and I felt a kinship to the family.  Then I found myself becoming angry.  More like frustrated.  Real food for real kids.  What a concept!  So why do so many of us find ourselves bucking a system that is supposed to want the best for our children?  Do doctors and dieticians wake up each day and say, “Hmmm.  I have 50 kids to see today.  Let me see how I can mess them up.”  Certainly not!  The doctor’s and dieticians that have spent the last 15 years helping keep Matt alive are not ill willed.  Many are simply uninformed.  Others simply lack the time due to huge case loads.  Still others find themselves with their hands tied thanks to a healthcare system that has become more about making money and less about caring for patients.

So where does that leave those of us who have the gall to insist that our tube-fed children and loved ones deserve and desperately need a diet that consists of real food?  In the battle, for better or worse.  We keep fighting, educating and spreading the word.  When it comes to blenderized and pureed diets for people with and without g-tubes, we can’t quit even when we feel we’ve hit a wall.  Our loved ones often can’t advocate for themselves.  We must be their voice.  Matt has been blessed with an amazing GI doctor.  She has seen what a whole food blended diet has done for him and other patients she has referred to me for help.  She too wants better nutritional options for families.  But, to paraphrase a comment she made to me one day, the healthcare system today is a large ship and  we are the rudder on that ship.  If we simply hold our position for long enough, the ship will turn.  Ever so slowly and often without notice.  My hope and prayer is that our voice gets so loud that big companies that sell fake nutrition for a profit will crumble and fade away.  Until then we will just keep doing what we do best…Loving. Caring. Sharing.

When you get a moment, read Kate’s Story.  It will both encourage and inspire you on your journey.