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
DIY Ripple Milk
This recipe is more of an addendum to my split pea milk recipe. I have had many more questions about it coming from Ripple drinkers. Some of the struggles were: separation, strong pea taste, watery taste and thickened texture. My original recipe was written for g-tube feedings and oral eaters with limited taste experiences. After fielding many of your questions, I set out to make a recipe that would work for Ripple drinkers. Please keep in mind, nothing we make at home can match the process that Ripple can produce in the lab. This recipe is creamier than my original recipe and does not separate. Hopefully my adjustments will make it more palatable. Please take note of the pictures above. The picture in the top right corner show 2 mason jars. The jar on the left is Ripple. The jar on the right is the DIY Ripple. Even after sitting overnight, it had not separated.
As always, my goal is not to just create and share new recipes but to educate: To give information not opinions. The pictures and notes are here to help you make the best choice for you.
- 1 cup of dry split peas (cooked in 3 cups of water)
- 4 large Medjool dates (3oz)
- 2-4 teaspoons of vanilla
- 1/4 cup of Sunflower oil (or oil of choice)
- 7-10 cups of water
DirectionsCooking the split peas: Place 1 cup of dried peas into a bowl and cover with 3 cups of water. Let sit for 8 hours or overnight. Transfer the peas into a pot or into the pressure cooker. If cooking on the stove, cook peas about 1-1 1/2 hours or until the peas are completely soft and all of the water has been absorbed. Stir. Note: If using an electric pressure cooker, there is no need to soak the peas overnight. Select “beans/lentils” and adjust the time setting to 30 minutes. Once the timer goes off, allow the pressure to release naturally. This may take up to 15 minutes. Remove lid and stir. Note, if using the pressure cooker it is important NOT to use the quick release. The starch in peas is very light. Using the quick release up and out of the pressure cooker through the valve making a mess:
Making the milk: Place 1 1/2 cups of cooked peas into the large (64oz) Vitamix container. Add 3 1/2-5 cups of water, dates, 1/2 of the oil (5 teaspoons) and vanilla and let stand (to soften the dates) for 30 minutes. Blend on High for 1 minute or use the “Smoothie” setting. Transfer first batch to mason jars and ice cube trays. Repeat the process with the remaining ingredients. If If the texture is not to your liking, you may want to run the milk through a nut milk bag to remove the starchy component of the peas.
Please keep in mind that, if you need it to have a higher caloric content, you will lose quite a few calories this way. The milk will keep fresh for about 4 days in the refrigerator. How quickly you use the milk will help you decide how much to freeze. After I use what is in the refrigerator, I take out only what I will use the next day and let it thaw overnight.
Time tip: If you have a pressure cooker, use it. Time and clean up can be cut in half that way. Freezing the extra milk in ice cube trays makes it easy to defrost exactly what you want. Each standard ice cube is 1 once.
Money Tip: Buying your peas from a bulk food store like Winco Foods is the best money saver. Most of their bulk food items are 1/3 to 1/2 the cost of those bought prepackaged. It also saves on waste because you only buy what you need.
“HELP! My DYI Ripple doesn’t taste, look or feel like the store bought one!” And, it won’t. Ripple is made in a lab where they are able to isolate the pea protein from split peas while our home versions are, well, made in our kitchens. We do not have machines that can do that. Also they add oil and different gums that keep it homogenized and smooth. Last time I checked I could not just walk into the grocery store and buy guar gum. Don’t get me wrong. I have nothing against Ripple. In fact, now that I have tried it, I think it’s pretty good.
So why bother making my own? Certainly going to the store and buying a bottle is far more convenient and less time consuming. I’ll be honest. It’s the cost. In fact that’s why I choose to make my own hemp , coconut and almond milks. When the doctor says Matthew’s calories need to increase by 200 calories a day, the cash register goes off in my head. Let’s do the math. Each 48oz bottle of Ripple costs $4.99. That’s 6 cups. If each cup is 70 calories, I am going to need to add almost 3 cups a day to his current diet. So the bottle will only last about 2 days. Lets’ say I buy 3 bottles a week. That’s $15 a week or $60 a month just on Ripple! Since that is not an option for me (and I’m guessing not for you either) getting as close to taste, consistency and texture is my goal. I have made a new batch that is much closer and it does not separate. That post is coming soon.
In the mean time, if you are interested in seeing how Ripple is made, I found an interview sheds some light on how it’s made. Obviously the cost is somewhat justifiable with all that they have to do to make it taste the way it does. Personally, I’d rather adjust my taste buds a bit and spend the money elsewhere. But, if I’m in a pinch, I will not feel guilty about buying a bottle now and then.
This was an unexpected surprise! I was originally trying to add more fiber to the Poopinator Plus because we are still waiting on a referral to UCLA Children’s Hospital for a more in depth motility. I also thought it would help his weight loss issue due his currently very limited diet. Sadly the fig gave him too much gas so I had to pull it out. But, as always, I try all of his blends to make sure they taste good and this was amazing! So far, with only 2 calorie dense ingredients an zero prep time this is by far the easiest, highest fiber calorie booster I have made to date.
-8oz Hemp Milk
-8oz Dried Adriatic Figs
- Place the ingredients to the 32oz Vitamix container in the order listed and secure lid.
- Let sit for 20 minutes to soften the figs.
- Select Variable 1.
- Turn machine on and quickly increase speed to Variable 10, then to High.
- Blend until completely smooth (approximately 1-2 minutes), using the tamper to press the ingredients into the blades.
Food Tips: This recipe packs 56.8 calories per 1 ounce serving. That makes it a good calorie booster without added sugars and/or syrup. Because it’s important for oral eaters, I always taste my recipes. This tastes amazing on toast (as seen in the picture). By itself it’s pretty sweet but added to other pureed dessert or snack recipes, I think it would tastes great.
Time tip: Freeze this butter in ice cube trays then pop them out into freezer bags for easy storage and quick defrost.
Money Tip: As with most of my ingredients, the figs and hemp seed are best purchased at a bulk food store like Winco. The prices are always much lower and you can by just what you need so there’s no waste.
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:
- Add 1/2 cup of white vinegar for 32oz containers and 1 cup for 64oz containers.
- Add hot water until the container is half full.
- Turn the machine on with it set to Variable 1.
- Quickly increase the speed to Variable 10, then to High.
- Blend for 15 seconds to mix the water and vinegar.
- Let sit for about 15 minutes.
- 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.
- Rinse the container then refill half way with fresh water.
- Repeat steps 3-5.
- Empty and let stand upside down to dry completely.
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:
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.
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.
- 4oz of the original recipe or any combination of the foods listed in The Poopinator
- 1oz of hemp milk
Directions: Warm the Poopinator THEN add the hemp milk. 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. 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!
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:
- Find a lunch box that will fit your feeding bag.
- Cut a whole in the top of it to thread the loop through so that you can hang it on the IV pole.
- Cut a whole in left side to allow the tube to exit and connect to the pump.
- Add Bag filled with the feeding and ice packs front and back.
- 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.
One of the most rewarding parts of being a tubie parent is being able to help others along on the journey. Raiden’s mom and I connected through a group online and now I get to watch him thrive on…You guessed it. Real food. Just look at that smile! I don’t know about you but I think he’s saying, “Thanks, Mom!”
Getting started can be scary and overwhelming. Just remind yourself that, barring any dietary restrictions, tubies are real people who need real food. Think to yourself, if my son, daughter or family member could take in 100% of what their body needs to thrive orally, what would they eat? If the person was able to eat before the tube was placed, what did they like to eat? That is always a good place to start. If your tubie is a baby just starting out, introduce 1 food at a time just as you would any baby, paying special attention to possible allergic reactions. There is also a hidden benefit to the tube. Tubies often get a more balanced diet because you don’t have to battle their taste buds.
Now, the title of this post is Raiden’s Breakfast Blend so let’s get to it.
- 1/2 cup of old fashion or quick oats
- 1 cup of Fairlife whole milk
- 1 cooked scrambled egg
- 1 apple
Combine oats and milk and cook according to the directions on the package. Cook the scrambled egg and set aside. Cut apple into quarters and remove the seeds. DO NOT PEEL.
- Place apple oatmeal and egg into the Vitamix container (in that order) and secure lid.
- Select Variable1.
- Turn machine on and quickly increase speed to Variable 10, the to High.
- Blend for 1 minute or until completely smooth.
This blend is about 300 calories. If the blend is too thick, water can be added to reach the desired consistency. Thinner blends can have lots of bubbles so it’s best to let it sit a while before giving it as a bolus feeding.
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.