Category Archives: Tubie Talk

For individuals with g-tubes

Hemp Seed

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I recently joined a group that focuses on blenderized diets. Originally my goal was to share my experience in order to help others with g-tubes live healthier lives.  Little did I know I was going to need their help as well.  Because Matthew is getting older and in need of more calories but not able to handle large volumes, I posed a question to the group regarding “milks” that were high in calorie.  Hemp seed milk (something I hadn’t heard of) was on the list.  Since this was coming from a group of people that had lot’s of experience, I began looking into it.

What I found was, it is yet another super food.  So, as always, I dug deeper.  Here’s what I found:

  • Hemp seeds have 9 grams of protein per serving.  They contain all of the essential amino acids making them a complete protein.
  • They are a good source of iron and Zinc.
  • They are an excellent source of Vitamin E, Magnesium and Phosphorus.
  • There is also 2.8mg of Manganese which is 140% of the DV.

Hemp seeds are also over 30% fat but they are rich in omega-3 and omega-6 which is more than both chia seeds and flax seeds.  These fatty acids, in balanced proportions, have been linked to a host of health benefits“The typical American diet contains 14 to 25 times more omega-6 fatty acids than omega-3 fatty acids, which many nutritionally-oriented physicians consider to be way too high on the omega-6 side.

The Mediterranean diet, on the other hand, has a healthier balance between omega-3 and omega-6 fatty acids. Many studies have shown that people who follow this diet are less likely to develop heart disease.”

One bit of information I found was very important to know.  Matthew has a condition called Chronic Thrombocytopenia.  Due to a severe infection he had at the age of 4, Matthew has a lower than normal number of platelets in his blood.  Since platelets are the part of the blood that allows clotting to occur, it is important for me to know that the oil in hemp seed may slow blood clotting.  this is why it is so important for anyone being followed by a physician for any medical condition should research any and all super foods that hit the market and, check with and/or inform your doctor if you have or are interested in adding them to your diet.

Sometimes people have g-tubes and don’t have a lot of other medical conditions so just trying out this healthy high calorie food.  Still others, like Matthew, are so complicated medically that research has to be done before even considering it.  Healthy or not, medically complicated or not, my treat all super foods the same.  See what is being said and check it against other websites.  Health food websites tend to only give the health benefits and not the side effects or contraindications.  Medical websites will sometimes do just the opposite.  I choose to look at both sides and decide whether or not it’s something that will benefit Matthew or make conditions worse.  If I am unsure, I check with his doctors.  I especially make sure to alert his GI doctor of any dietary changes I have made.  I also don’t give him anything I haven’t tried myself.

In closing, I follow the “less is more” rule.  In other words, just because a super food has some really enticing health benefits, ingesting lots of it can cause problems.  Look for sites that will give you therapeutic doses and stick to them.  Our goal is to stay out of the doctor’s office, not end up in one.

Hemp Milk

  • Servings: 8
  • Time: 3 minutes
  • Difficulty: Very Easy
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Hemp milk is by far the easiest dairy milk substitute.  There is no cooking and, with the Vitamix, there is no need to run it through a filtration bag.  It is very calorie dense with lots of protein.  It tastes great as is but I’ve added a couple of ingredients for folks who like their milk substitutes a little sweeter.

Ingredients

  • 1 cup hemp hearts
  • 2 1/2 cups of water
  • 4 pitted dates
  • 1 cup of water
  • 2 teaspoons of vanilla

Directions

  1. Place hemp hearts, dates and 2 1/2 cups of water into the Vitamix into the container and secure lid.
  2. Select Variable 1.
  3. Turn machine on and quickly increase speed to Variable 10, then to High.
  4. Blend for 1 minute.
  5. Turn machine off and remove lid.
  6. Add the remaining cup of water and the vanilla and secure lid.
  7. Select Variable 1.
  8. Turn machine on and blend for 30 seconds.

 

Food Tips:

  • It is a good idea to slice the dried pitted dates lengthwise before putting them in the Vitamix.  This will ensure that no part of the pit was left inside during processing at the plant.  I have yet to find any literature that says they are dangerous but the pieces can clog g-tubes.  Even if a piece gets through it could cause problems in the GI tract of someone who already has difficulty processing solid food.
  • If you have time, soak the dates and hemp seed for 30 minutes before blending.  This reduces the amount of sediment and completely removes the need for straining or filtering.
  • One cup of fresh hemp seed milk has about  194 calories.  It has 10 grams of protein and 14 grams of fat so, unless you have a high caloric need, I suggest sticking to the 1/2 cup serving size.  Hemp milk will stay fresh in the refrigerator for 3-4 days.  Drink it straight or add it to smoothies.  It is also a great base for blenderized meals.
  • As with all “Super Foods” take the time to research and steer clear of the idea that “if less is good, more is better.”  This is very important if you are dealing with specialized or restricted diets, on medications or have various health conditions.

 

Time Tip:  Freeze any portion of the milk that will not be used in 3-4 days in ice cube trays.  Store the cubes in labeled and dated freezer bags for up to 6 months.  Since each cube is about an ounce, you can quickly grab what you need without wasting any.

 

Money tip:  Shop around before buying hemp hearts.  They can run as high as 12 dollars a pound in some stores and on line.  Winco has the lowest price at $7.02 a pound.  They can be found in the bulk food section for much less than the prepackaged bags.  It is good to alternate seed/nut milks.  If you are on a tight budget, alternate the types of nut/seed/bean milks you make to save money.  This is also important especially for individuals on blenderized diets to insure balanced nutrition.

 

The Poopinator


The Poopinator was lovingly named for it’s ability to move “mountains” (insert laughter)! I had reached the end of my rope, tied a knot and was hanging on for dear life when the knot unraveled. Matthew’s KUB showed that he was backed up again and the GI wanted me to do another “clean out”.  Matthew does not suffer from constipation in the typical sense (hard stools).  He suffers from slow transit constipation and lack of sensation so he can’t feel when he has to go and I wanted him off Miralax. We had done it before (more times than I care to remember) but this time was particularly bad. Needless to say I (and I’m sure Matthew) had had enough so I reached out to my Facebook group, “Blenderized RN” for help. I got lots of suggestions for foods that work as laxatives. I tried several individually but they didn’t work. So I put on my mad scientists lab coat and glasses and went to work. And so The Poopinator was born!  No more Miralax!

Ingredients


1 once pureed celery
1 once pureed pumpkin
1 once pureed butternut squash
1 once pureed papaya

Directions

  1. Combine all ingredients in a bowl or small jar and stir.
  2. Using a 60cc syringe, draw up mixture making sure to expel any air bubbles.
  3. Give bolus at a rate that is comfortable for your child.  For example, Matthew does well if I give 20mls at a time and wait 5 minutes in between.
  4. Finish with a water flush.  Use whatever volume your child can handle.  I use 15ccs because Matt can handle it.

If 1 once of each item is too much volume, you can cut them in half. You can also start with only 1 item and see how it works before adding another.For convenience I blend the ingredients separately, freeze them in ice cube trays and store them in labeled and dated freezer bags. That way you use exactly as much of each ingredient without wasting any. Because he gets his bolus in the afternoon, I take out the cubes I want in the morning, put them in a small mason jar and let them defrost in the refrigerator. Be sure to warm the jar slightly before giving the bolus so you don’t end up with an upset stomach.

Here are some other foods that can have a laxative effect: Prunes or prune juice, fresh spinach, black strap molasses, peaches, pears,pineapple, orange, apricots, plums, soaked raisins, flax seed and flax seed oil,Aloe juice and fresh Aloe Vera,coconut oil and sweet potatoes.

Since everyone’s system is different, some things may work too well (causing diarrhea) and some not at all. It can be frustrating but don’t give up. Try foods independently or, like I did, create your own cocktail. Like any good recipe, just remember to write it down so the items and amounts stay consistent.

Homemade “Ripple Milk”

  • Servings: 8
  • Time: about 1hour 5 minutes
  • Difficulty: easy
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The first time I had ever heard of this was on a Facebook group called blenderize RN. Having a teenage boy on a blenderized/pureed diet can be difficult at times. Because of his complicated GI tract and minimal oral experience, it’s hard finding things he can and will eat without slowing his digestion down. Since Matthew drinks his formula, I wanted to increase his calories and protein without adding more formula but do it in such a way as to not upset his very restricted palate. Enter “Ripple” (aka split pea milk). Since everything I blend for him is homemade, I thought I would try making it myself. I added 1 cup to his normal formula recipe and he didn’t even notice. It was so easy and inexpensive, I just had to share.

Ingredients

  • 1 1/2 cups of cooked yellow split peas
  • 3 1/2 cups of water
  • 2 tsp vanilla (optional)
  • 4 pitted dates

Directions

  1. In a medium size sauce pan, bring 1 cup of dry yellow split peas and 4 cups of water to a boil.  Boil for 10 minutes on high then reduce temperature to simmer and cook until peas are soft (about hour).
  2. In the large Vitamix container, add ingredients in the order listed and secure lid.
  3. Select Variable 1.
  4. Turn machine on and increase speed to Variable 10, then High.
  5. Blend for 1 minute or until completely smooth.
  6. Remove milk from blender and repeat steps 2-5 with remaining peas.

Food Tip: This recipe makes a total of 10 cups of milk.  It is thick so if you plan on drinking it, you may want to thin it out a bit.  With 75 calories per cup and 8 grams of protein, it makes an excellent addition to a blended diet.  It can also easily replace cows milk in baking for those who have a dairy free diet.  Milk will stay fresh in the refrigerator for about 4 days.

Time Tip:  Make the full batch and freeze extra milk in ice cube trays then store in labeled and dated freezer bags.  Each cube is about 1 once making measuring a  breeze.

Money Tip: One pound of dry split peas cost around 70 cents a pound at bulk food stores like Winco.  Ripple milk runs about $4.29 for 48oz.  Since I only used 1 cup of dried beans, I made 80oz for only 33 cents!

Emergency Kit

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One of my fellow tubie moms thought it would be a good idea to write a post on emergency preparedness for tubies.  Keeping your freezer stocked with a 30 day supply of blends is beneficial in the event of a power outage but, that won’t help if you are evacuated from your home in an emergency.

This bag is under Matt’s bed.  I equate it to a “diaper” bag on steroids.  Because he has night nursing, it is a requirement but I think everyone should have one in case of an emergency.  If there is an emergency, we can grab Matt and the bag at a moments notice.  This would in addition to the disaster supply kit you have (or should have) for your family.  Typically the kits are set up for 72 hours.  The bag should be restocked after every use or at least once a year.  Here is a list of the supplies I keep ready for our son:

  1. Formula-Even though your child may normally get whole food blends at home, That may not be practical in the event of a disaster.  It is good to keep some of the formula that he/she can tolerate for emergency purposes.  Make sure to include a cup (for oral feeders) and a mixing jug in case you dilute it.
  2. Water-Think about how much free water your child gets or drinks in a day then multiply by 3.
  3. Syringes, extension tubes and bolus feeders-The Mic-Key button comes with an extra extension tube for pump feedings and a bolus tube and syringe.  Even if you don’t use the bolus feeding tube, save them and pack them in the emergency bag.
  4. Medication-The pharmacy will supply you with small bottles extra “emergency” medication if you ask them.  We are required to give the school a 72 hour supply of all medication so I ask the pharmacy for additional bottles for the emergency bag.
  5. Exam gloves, hand sanitizer, wet and/or baby wipes-These make clean ups much easier if you are not near running water.
  6. Surgical masks-Many of our children have poor or compromised immune systems.  You can use the masks if you find yourself confined with others who might be sick.
  7. Dressing change supplies-Even if you normally use the reusable type, having some sterile 2×2 drain sponges and paper tape on hand can be a lifesaver.
  8. Diapers, pull-ups and disposable under pads (chucks)-The under pads make perfect changing pads.  If they get soiled, just toss them.  Also toss in some plastic grocery bags for when disposing of diapers and pull ups isn’t convenient.
  9. A change of clothes-Try to keep a light jacket, blanket and seasonal clothes in the bag.
  10. Finger food-If your child is an oral eater, keep a sealed package of his/her favorite snack.
  11. Lovey/soother-No matter what the age of your child, emergencies/disasters are scary.  Keep something in the bag that can distract and calm them.

Raw Coconut Milk

  • Servings: 8
  • Time: 30 minutes
  • Difficulty: easy
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When I was a little girl growing up in Massachusetts, one of my favorite memories was making coconut beans and rice with my grandma. It was an old family recipe from Jamaica that was made during the holidays. When we were making it, the wonderfully sweet smell of fresh coconut filled the house. I can remember sitting at the kitchen table with a cheese grater grating the coconut meat by hand and placing it on cheese cloth. I can also remember the stern look I got from her when she caught me sneaking a piece to nibble on. It was my dad’s job to “milk” the coconut. The cheese cloth containing the shredded coconut was tied and placed in a pot of boiling water for 20 minutes then squeezed and measured. My dad was the only one tough enough to handle the job. All of this took lots of time but the final dish was like no other. It was a labor of love so we didn’t mind.

Fast forward to the present. Because of the Vitamix, I can make fresh coconut milk in a fraction of the time, no scraped knuckles from the grater, with less mess and nary a burn from scalding water.

Ingredients

Prepare fresh coconut

6oz fresh coconut meat

4 cups of water (total)


Directions

  1. Place coconut meat into the container and secure lid.
  2. Select Variable 1.
  3. Turn machine on and quickly increase speed to Variable 10, then High.
  4. Blend for 30 seconds or until a fine mash is formed using the tamper to press the coconut meat into the blades.
  5. Turn machine off, remove lid, scrape container with a Vitamix spatula, add 2 cups of the water and replace the lid.
  6. Select Variable 1.
  7. Turn machine on and quickly increase speed to Variable 10, then to High.
  8. Blend for 1 minute then pour contents into a Vitamix filtration bag to extract the milk.
  9. Return the mash in the filtration bag to the Vitamix container and add the remaining 2 cups of water.
  10. Repeat steps 6-8.

Food Tip: Save the coconut water extracted prior to removing the meat from the shell to drink separately.  Coconut milk is VERY high in fat calories so watch how much you drink (about 256 calories per 4oz serving). It is an excellent way to boost the calories in a blenderized or pureed diet for people with volume intolerance. Raw coconut milk will only stay fresh in the refrigerator for 4-5 days so freeze any unused milk and/or coconut water in ice-cube trays and store in dated labeled freezer bags. Always test for allergies by giving a small amount (1-2 tsp) over the course of 4-7 days.

Time Tip: Coconuts typically contain 12-14 oz of meat. Freeze any unused meat in a dated and labeled freezer bag for future use.

Money tip: Coconuts are less expensive during the holidays so stock up, process and save.

For more information on picking and processing fresh coconuts, please see my blog post on that topic.

Basic Blend

This is one of those “what we had for dinner” blends.  The picture and the recipe are spoon thick because it can just as easy be used for someone on a pureed diet.  To make it thinner for bolus or pump feeding, just add more turkey stock or bone broth if you happen to have some.  You may notice that the stock is green.  That’s because I blended the meal right after I had made a green smoothie.  By not washing out the container, I saved time and water.  Plus all of the extra nutrients from the green smoothie are now in the dinner blend!

1/2 cup of turkey or chicken stock

2 cups steamed or raw broccoli

1/2 cup brown rice

6oz (approx. 1 cup) cooked turkey or chicken

  1. Place all ingredients in the container in the order listed and secure lid.
  2. Select Variable 1.
  3. Turn machine on and quickly increase speed to variable 10, then to High.
  4. Blend for 1 minute, using the tamper to press the ingredients into the blades.

Food tip: This recipe is great for starting out.  None of the ingredients are commonly associated with food allergies.  Raw broccoli is a little harder to digest so, if the blend causes gas, steam the broccoli first.

Time Tip: If you are blending for a little one, freeze the blend in ice cube trays for quick easy 1 oz portions.  Depending on the caloric need, use batch blending and store in feeding specific quantities.

Money Tip:  Buying meat on sale is the best way to save money. For example, I buy an extra turkey during Thanksgiving and keep it in the freezer.  I cook it up some time later as a Sunday dinner, turn some of the leftovers into turkey enchiladas and setting aside at least a cup for blending.  Then I boil the carcass to make a a quick turkey stock or, if I have time, turkey bone broth.  Also, buy broccoli in bulk at a club store.  Use as much fresh as you can eat in 4 days and steam the remainder before freezing in 1-2 cup portions for later use.

 

 

Just Keep Swimming

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Matthew at 3 watching “Finding Nemo”

What do you do when you’ve done all that you can and your tubie needs a clean out anyway? All of the blending and adding and removing and…SO MUCH GREEN STUFF! Well… You just keep swimming, right? That’s what Dori did. Yes, finding Nemo is one of Matt’s favorite movies to this day even though He’s now 15. So amid the overwhelming feeling of defeat,exhaustion worry and fear I hear that song ringing in my head. Oh how I wish it were that easy. Matt has had GI troubles since he was 8 months old. I’ve been at this for 15 years. Shouldn’t I be use to the ups and downs of this tubie roller coaster by now?

But, as we all know, that is not the case. Putting up with the pain and discomfort or watching someone you love go through it is never easy.  So whether you are a tubie yourself or the caregiver of a tubie, a newbie tubie or a veteran tubie, please know that you are not alone. Find a support group if you are not in one already. They are indispensable! Where else can you go and talk about poop and vomit as if it were the weather. We get each other. No need to explain, defend or excuse. Just take a breath and…You guessed it! JUST KEEP SWIMMING!

Nooooo!

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So what do you think happened here?  Was it:

  1. The baby threw up.
  2. The syringe malfunctioned.
  3. The med port popped open.

If you guessed #2, you were right.  Sticky syringes can be annoying if not down right disastrous.  Has it happened to you or is it just me and the mom of this baby?  I have had to clean walls, ceilings and floors because I forced a syringe filled with medication or oils.  You know the drill.  You use a syringe, wash it, let it dry and forget about it until it’s time to reload it.  When bolus feeding a blenderized diet it can cause a sticky syringe within in 1 to 2 uses.  We all know tossing our syringes after so few uses is out of the question. You have to use those syringes 5-6 times a day minimum for up to a week so what do you do?  The answer:  Lubricate the plunger.

I use coconut oil for 2 reasons: 1) It was recommended to me by another Tubie mom and 2) when I used olive oil it still got stuck.  So here’s the process:

  1. Starting with a dry syringe and plunder, dip the plunder into a bowl containing slightly warm coconut oil.
  2. Make sure to coat all surfaces of the plunger.
  3. Insert the plunger into the syringe and move the plunger up and down inside the syringe several times while turning the plunder.
  4. For the 60cc syringe, I sometimes use my finger to lubricate the inside in addition to the plunger.  This is helpful if the blend is fairly thick or the syringe has been reused a number of times.

Now you are ready to load your feeding.  It is very important to give the feeding immediately after loading it. It has been my experience that, if you set the syringe down and come back to it, the plunger will be stuck.  And what happens when you have a syringe full of a blend and you try to force into the extension tube?  Refer to picture 1.

If you are feeding on the go, I suggest you carry the coconut oil with you in a small vial.20170130_091230  It is solid at and below room temperature so you will want to keep it somewhere that is fairly warm.  If you can’t do that, you can still use it on the plunder but you have to do step #3 until the friction in the syringe melts it.

I would love to hear what works for you.  Please leave a comment.  The more information we have the fewer, “Nooooo!” situations we will have.

Baby Steps

Yes, even veteran tubie moms can struggle from time to time.  Matthew can’t handle large volumes because of his slow emptying issues. He is a growing teenage boy who is now more active than he’s ever been in his life. It has been quite a challenge getting him the additional calories he needs without increasing volume. Recently I had to add another carton of formula to his daily routing because his weight was dropping. I have been hesitant to try coconut oil and/or milk because of extreme food allergies in the family. For years I have been making his oatmeal with formula. Helping a transitioning little one has given me the courage to try adding 1/2 tsp of organic coconut oil in his immune system cocktail (given through the g-tube) to see how he reacts. It’s been 2 days and so far so good. If he continues to show no allergic reaction I will make his next batch with fresh coconut milk instead!