All posts by The mom doc

About The mom doc

Proverbs 31 wife and mother of 6.

Another PICC Line

Another PICC line

Hands up.  Eyes closed.  Twisting at the waist as if the top half of him was actually a washing machine agitator.  Sunday morning worship is extra special when Matt is with us.  Sometimes I just watch others watching him and smile. Other times I think “If they only knew what it takes on a daily basis to get him ready to go anywhere or how much pain he has experienced in the 15 years he has blessed us with his presence.  Some would say, “Well, he doesn’t know any better.”  I beg to differ. He may not understand it (neither do I for that matter) but he feels it.  He doesn’t like it (see above picture) but he chooses not to let his circumstances steal his joy.  Oh, if I could only live life the way he does-To be that strong.  I think I would have checked out long ago.  What joy he brings to others.  I truly believe that is his calling.  “Matthew” means “Gift from God” but it might as well mean “Acceptance with Joy”.  But, as his mom, it is times like this that break my heart.

Another PICC line. Another g-tube stoma infection that won’t clear.  Another round of IV antibiotics.  A bowel that stops working no matter what I do with his diet. More unanswered questions.  More decisions to make for him.  Decisions that undoubtedly will involve more pain and more time away from home and school.   I try not to question God but sometimes it’s hard.  It’s hard when he’s in the hospital and is asking at least every 30 minutes to go home.  Or,  every weekday when he says, “Mom.  Go school?” and I have to say “I’m sorry.  Not today.  You can’t go to school with a PICC line.”

I have read that, 90% of in utero diagnoses of Down Syndrome end in abortion.  Some would use cases like Matthew’s as justification. Not everyone with Down Syndrome struggles with such complicated medical conditions.  Many live long, happy and even independent lives.  When Steve and I said no to the amniocentesis, we said “yes” to whatever God had in store for us as a family.  I liken it to standing at the alter on your wedding day.  You stand before God and man and make a vow “til death do us part”.  Why?  Because we have no idea what lies ahead. God doesn’t give us a crystal ball on our wedding day.  If He did, many of us would never marry.   And so it is with our children.  Some come into the world healthy and stay healthy.  Some come in healthy and get very sick or become disabled in some way.

So what do we do?  Just as we would for any sick or injured spouse or child.  We rise each day, ask God for renewed strength and deal with what’s in front of us.  If  Matt can  take it, we can make it.

 

Mooie!

enteral-feeding
Night Feeding Via Pump

Ok it’s been a while since I been able to add a new recipe so here goes.  I’m dedicating this to 2 young tubie warriors.  This ones for you, kiddos!

Three years ago, right before Matt had his hip surgery, his digestive tract started giving him problems again.  I was trying to avoid putting him on laxatives so I developed a green smoothie that I had hoped would help him.  I originally put fruit in it and offered it to him to drink.  He liked it (sort of) but he only drank 2oz.  I knew that was not enough to work so I went back to the drawing board.  Then it dawned on me.  He has a g-tube!  He doesn’t need to drink it so I can remove the fruit and add more greens!  It worked.  The added greens allowed me to add more fiber without fighting with him about the taste.  Now when I give him a bolus feeding or hang his bag for his night feeding he smiles and says, “Ooh! Mooie!  Yup.  You got it.  That’s where the name came from.

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Bolus Feeding

Since each child and adult that are g-tube dependent have different issues, I caution you to check with your doctor before changing a feeding regimen and, if you get the ok to to try this, add small amounts at first and watch for adverse effects.  I do not recommend making this smoothie with anything else but a Vitamix.  The Vitamix blends the green so finely that there are little or no leave particles to get caught in the filter of the feeding bag.  If the filter gets clogged that feeding stops and the alarm goes off.  It’s less of a problem for bolus feeding but, if there is difficulty in breaking down solids, it could cause issues.  This is the one that worked for Matt:

  • 1 Cup of peppermint or chamomile tea
  • 2 Tablespoons Organic apple cider vinegar
  • 1oz fresh Aloe Vera (optional)
  • 2oz Avocado
  • 3 Cups packed greens (your choice)
  • 4 tsp organic olive oil
  • 1/4 cup fresh basil leaves

Makes 2 8oz smoothies.  I have also added 1 tsp of fresh pureed ginger when Matthew’s stomach was more upset than usual.  Feel free to experiment with different greens.  Sometimes I will buy the large bag of Power greens or spinach from Costco along with Romaine lettuce hearts.  I also keep a close eye on the local farmer’s market for greens that are on sale.  Parsley is great because it helps settle the stomach.

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.

 

Papaya

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Ahh, papaya!  I’ve come across two groups of people when it comes to this amazing fruit.  Those that love it and those that are, well…let’s just say, not so fond of it.  Whether you like it or not, it’s health benefits are impressive, to say the least, so finding a way of incorporating it into your diet is definitely a good idea.  You will often find papaya in tropical frozen fruit blends. Blended in a smoothie is a tricky way of sneaking it in if you ave a struggle with the after taste.  But that’s only 1 way.  There are lot’s of recipes to suit anyone’s tastes.
Aside from being and excellent natural laxative, papaya has some some pretty impressive nutritional facts . One cup of raw papaya contains:

  • 55 calories
  • only 8 grams of sugar
  • 3 grams of dietary fiber
  • 144% RDI of vitamin C
  • 31% RDI of vitamin A
  • 13% RDI of Folate
  • 10% (360mg) RDI of potassium

Papaya can also:  Promote digestive health, work as an anti-inflammatory, boost the immune system and much much more.

Food Tip:  When pureeing papaya, remove the skin.  It adds no nutritional benefit, can be bitter to taste and can contain latex can cause allergic reactions.  Also, for some reason, papaya goes from being a smooth, slippery, and easy to use in a bolus or pump feeding to this:

Pureed papaya with skin
Pureed papaya with skin

Yes I did that.  No, it does not bolus well (threatens to clog) and will not blend into my food-based laxative cocktail.  Chalk one up for experience.  So, in the end, if you have not tried papaya…Go for it!

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.

Vitamix: Engineered to Last

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So why is the Vitamix the only blender I will endorse?  It is the Vitamix engineering.  Vitamix has an extensive history and a warranty that backs their claims.  And why not?  This company has been going strong since 1921!  Mine has been running strong since 2011 and I use it daily.  There isn’t another appliance in my house that I can say that about.  It is an investment into the health of my family.

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
  • Print

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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.