Thursday, August 22, 2013

Blended Diet Part 2: How we got started

We Choose REAL FOOD!!!
This post will go into detail about how we started our Blended Diet and the steps that followed.  A pretty technical post that may bore those who are not looking to start this form of diet themselves.  :)

All of our ingredients and measurements are calculated to Noah's specific size (33" long), weight (24-27 pounds), and age (20-22 months old) and dietary goals (he needed to gain a couple pounds to start and then maintain for a few months).  We found a dietitian that was willing to help us out and we have had regular blood draws to measure his levels (calcium, protein, vitamins, minerals, ect) so that we can adjust his recipes accordingly.  Each person is different as well as their dietary needs.  Noah currently does not have any form of hormone issues, allergies, or dietary restrictions so we have been able to pick from a variety of food options in creating his meals.  The one are we had to watch closely was the rate at which he was to gain weight.  He is severely low tone and very immobile getting little calorie burning exercise a day.  We had to consider this in every meal so he didn't get too big too fast and hinder his movements or abilities. Noah also had eaten many real food items in his past and we knew that his body could handle real food. 

Goal:  Have Noah gain 2-3 pounds with a well balanced meal plan and then maintain that weight without gaining or losing more than a few ounces for an additional few months.  Then we re-access at that time.

  • Total caloric intake of 900-1000 calories a day.
  • 34 ounces of free liquid a day (24 hours)
  • 15-20 grams of Fiber/day
  • 12-15 grams of protein/day
  • Keep recipe well balanced  
Recipe Elements: 
  • Vegetables
  • Fruits
  • Protein
  • Grain
  • Fat/Oil
  • Liquid (preferably calcium fortified)
  • *Spices-optional
  • *Vitamins-optional
Challenge: getting enough calories to fit into the volume we needed.  Noah can only tolerate 4-6 ounces of anything in his stomach at one time so we have to make sure to pack in everything into that volume while still following all of the above "guidelines" 

Blender: You must have a really high end blender (Vitamix, Blendtech, Ninja) once you get into blending food like whole grains, meats, raw vegetables, ect.  It has to blend well enough to make it thin enough to flow through the feeding tube without clogging.  If you are starting like we did with baby food then you can use pretty much any blender.  We used the baby bullet and it worked great as long as everything you are blending is already the consistency of baby food. 

Tricks & Tips: lessons learned :)

  1. mix all liquid and soft foods first then slowly add in dry foods
  2. blend multiple times to ensure smooth texture
  3. use a strainer if you are not sure if there are any clumps
  4. have a towel, washcloth, or paper napkin around as there are messes
  5. scrape out blender you will be amazed at how much is still in there
  6. have a large space on your counter for this process
  7. save all baby food jars if you plan on freezing your own foods
  8. If you save food in the fridge for the next day measure out your meals and then let sit overnight.  Then the next day add in the extra water/fluid you will need.  Grains absorb fluids and make the meals really thick over night
  9. This is real food and can grow bacteria if not kept clean or cool.  Always put an ice pack when packing this food around with you.  Would you eat your breakfast food at 8pm if it has been sitting out on the counter all day?
  10. warming food before you feed it to your child makes the meal smoother and thinner 
  11. If you freeze your food/meals only fill the container partially as it will expand once frozen
  12. Aim for a rainbow of colors for his foods (veggies & Fruits).  different colors means different minerals, vitamins, and nutrients. 
  13. We opt for variety at all time but if your doctor is okay with a strict but balanced recipe then giving your child the same food each day is just fine.  But talk to your doctor or dietitian first.
  14. Certain foods make blends really thick-Avocados, bananas, quinoa, starchy foods, ect- watch out for these
  15. Certain foods make blends to thin (volume issue)- fruits (melons mainly)
  16. Certain foods are more prone to cause clogging issues- berries, whole prunes, things with tough skins or seeds, hard grains, ect
  17. Dairy milk froths when blended and can alter measurements
Equipment (other stuff you 'might' need):
  1. Blender
  2. measure cups and spoons for both dry and liquid goods
  3. a fine mesh strainer
  4. a spatula
  5. a cloth for messes
  6. 60 cc cath tip syringe(s)
  7. all your food and vitamins and medicines
  8. pump bag (if you go this route)
  9. If you plan to make ahead of time and save or freeze have your jars, bags, pouches, or cups clean and ready to be filled.

Week One:  We replaced one formula meal with one full blended meal.
  • we chose the easy route since Noah was still a toddler and went with baby food.  Not the cheapest option but since we both work full time this was the best option for us. 
  • He was still getting most of his nutritional needs through his formula this week.
  • 4 bolus feeds during the day (8am, 11am, 2pm, 5pm) over 1 hour and a 10 hour continuous feed during the night of water or water with formula to meet his free liquid and calorie goals. 
  • We still ran his BD meal over the same 1 hour time frame to start.  
  • 2-3 times a day about 30-60 minutes prior to each meal we would flush him with 1-2 ounces of water.  This helped meet his liquid goals as well as "clean out" whatever food was still in his stomach to make room for the next meal.  ***free water without anything in it does not digest therefore it absorbs in the body within 20-40 minutes and will not make you feel full or take up any room in the stomach for each meal. 
Recipe: (total of 150-250 calories needed for this meal)-high end if he vomited his earlier formula or not. We gave this one BD meal to him at 5pm each day to start. 
  • 1 ounce protein (Gerber meat-chicken, turkey, ham, beef...with gravy)-50 calories
  • 2 ounces vegetables (Gerber sweet potatoes, peas, or carrots)- approx. 40-50 calories
  • 2 ounces fruit (Gerber pears, apples, mixed fruit)- approx. 40-50 calories
  • 1/4 cup calcium fortified liquid (dairy, rice, soy, almond milk)- approx. 20-30 calories
  • 1 tsp oil (flax seed oil w/omega 3, olive oil, coconut oil)- approx. 30-40 calories
  • 1/4 cup grain (baby cereal-rice, multi grain, oatmeal)-60 calories
  • Vitamin D-400 units
  • 1/2 tsp Probiotics
Week 2&3: We continued to follow this same recipe for weeks two and three but started to experiment with different baby food options.  We also started to introduce 2 BD meals a day by week three at the 2pm and 5pm meals.

Week Four: We stayed with the same guidelines as the prior weeks but now we started to add in adult foods.  We were still doing 2 BD meals a day and 2 Formula meals a day along with the continuous night feed of water and/or formula depending on if he met his calories and liquid intake. 

Recipe: (total of 300-450 calories needed for these 2 meals) 
  • 2 ounce protein (Gerber meats, tofu, ground turkey/beef, peanut butter, grilled chicken, roast)
  • 4 ounces vegetables- 2 oz of 2 different options (Gerber foods, edamame, kale, spinach, frozen mixed blends, grilled squash)
  • 4 ounces fruit- 2 oz of 2 different options (Gerber fruits, fresh fruits, prunes, applesauce, fruit cups, frozen fruit)
  • 1/2-3/4 cup calcium fortified liquid (dairy, rice, soy, almond milk, broth or stocks)
  • 2 tsp oil (flax seed oil w/omega 3, olive oil, coconut oil)
  • 1/2 cup grain (baby cereal-rice, multi grain, oatmeal, brown rice, quinoa, flax seed, Mill seed, hemp hearts, multi grain cheerios, couscous, whole wheat pasta, whole wheat bread, ect)- stay around 120-160 calories
  • Vitamin D-400 units
  • 1/2 tsp Probiotics 
***I started to run into volume issues once I went to two meals a day and learned to adjust my food choices depending on how juicy they were or how thick they blended.   Trial and error. 

Week Six: FULL BLENDED DIET (900-1000 calories/day)-

**We stayed with the four bolus feeds during the day but adjusted the times to fit his needs.  He is more gaggy in the mornings so we do a 4-5 ounce feed at 8am and then increase it to his now 6-7 ounce total dose/meals throughout the day depending on how he is feeling.  If he eats 6+ ounces in one meal then we wait 3.5-4 hours for his next meal (starting from the time he started his last meal).  Whereas before he was starting each feed 3 hours after he started the last one. 

**We still are giving him 2 ounces of free water in-between each meal and are still running him over a 10 hour continuous feed at night but now it is only water.  We still are unable to meet his 34 ounces of fluid goal during the day alone at this point. 

Recipe: (total of 900-1000 calories needed for these 4 total meals) 
  • 2 ounce protein (Gerber meats, tofu, ground turkey/beef, peanut butter, grilled chicken, roast)
    • this does not increase because it meets his protein goals with only the 2-2.5 ounces.  
  • 8 ounces vegetables- 2 oz of 2-4 different options (Gerber foods, edamame, kale, spinach, frozen mixed blends, grilled squash, ect)
  • 8 ounces fruit- 2 oz of 2-4 different options (Gerber fruits, fresh fruits, prunes, applesauce, fruit cups, frozen fruit, fruit juices, ect)
  • 1-1.5 cup calcium fortified liquid (dairy, rice, soy, hemp, almond milk, broth or stocks)
  • 2 Tbs oil (flax seed oil w/omega 3, olive oil, coconut oil, other oils)
  • 1 cup grain (baby cereal-rice, multi grain, oatmeal, brown rice, quinoa, flax seed, Mill seed, hemp hearts, multi grain cheerios, couscous, whole wheat pasta, whole wheat bread, ect)
  • Vitamin D-400 units
  • 1/2 tsp Probiotics
  • Multi-vitamin-currently Noah is on 1/2 of a child's Flintstones type multi-vitamin

I have also started to make my own veggie and fruit blends.  Here are my two first blends that I came up with.  I keep these in my freezer and then pull what I need out the night before to thaw in the fridge until I mix it into my meal blend.  (I plan on dong many more of these)

Simple Veggie Blend:

1 entire Costco size bag of Frozen Normandy-Stye mixed Vegetables
1 entire grocery store brand bag of shelled steamed edamame
1 entire grocery store brand of frozen kale
  • Cook everything according to directions
  • Blend 3-4 cups mixed veggies, 3 Tbl edamame, 1/2-1 cup kale, and 1 cup water in batches.
  • Pour into your freezer safe containers, label with date or keep note of the date you made these.
When I did this it made 34 (4 oz) containers.  I used cleaned baby jars to freeze these in.  Each container is roughly 45 calories, 2-4 grams of fiber, and 2-4 grams of protein.  I did not label these as I want to use them again in the future.  I put them in a box in our freezer and labeled the box instead.

Simple Fruit Blend:

1 extra large cantaloupe
1 regular sized can of Dole pineapple without the juice
1 regular sized can of pears with the juice
1 regular sized can of pears without the juice
3 regular sized apricots

  • Cut the Cantaloupe and remove all seeds.  Dice up the fruit in chunks and throw away the rind.  
  • open your three cans of fruit and drain the juice out of the pineapple and one pear can.
  • Cut apricots in half and remove seed
  • split into two batches of equal portions
  • blend away :)
  • Pour through a strainer before jarring.  The pineapple will leave a ton of fibers that may cause clogs in your pump tube.
This makes a ton of liquid and frothy volume.  I let it set out for a few minutes to let the bubbles settle.  I then poured into 23 (4 ounce) baby food jars.  I calculate each jar is roughly 60 calories. 

We are still in the learning process as you can tell but I think we are making ground on this whole blended diet thing.  We are currently making two days worth of food at a time and keeping them in the fridge ( I plan to expand this to a full week at a time).  I have personally found that using reusable baby food pouches is our best option.  We have recently purchased the Yummi Pouch which can hold 6-7 ounces of food at a time, opens from the top which I love, fits a 60CC cath tip syringe in the screw off port, cleans really easy, and the bottom expands as you put the food in it and it doesn't tip over while filling. There are many brands of reusable food pouches on the market right now.  I make 8 (6-7) pouches every other day right now which makes it really easy to bring to daycare and on errands.  I use a wine bottle freezer sleeve/pack to slip the the food pouch in while running errands to keep it cool inside his pump backpack. To fill these pouches I have found the easiest method is to either use a large 60cc or 100cc cath tip syringe or to use a measuring cup that has a long narrow spout.  

There are many many blogs, networking groups, websites, and books that offer a variety of other tips, tricks, and recipes.  I am not by any means an expert in this area but I still wanted to share with you our journey and how we got started.  I find myself researching new recipes daily and it is almost a game for me to find one that has the perfect amount of volume/calorie/guideline balance.  I notice a major difference in Noah since starting him back onto real food again. 

I have also met a wonderful tubie friend who is in the process of starting her own line of Complete Tube Fed Meals.  I can't wait until she is in full production :) Check out her website and her adorable Chief Inspirational Officer: JustFood

Blended Diet: Bye Bye Formula

compare to a tiny apple
Noah's eating has been a yo-yo of a journey as you all know.  He started out on breast milk, then was drastically switched to formula.  He was introduced baby food around 4.5 months old and took to it really well and then over some time all oral eating started to decline.  Yada yada yada....(insert many months later)...(add in surgeries)...(with a dash of oral aversions and GI complications).....and now he has the infamous G-tube (feeding tube directly in his stomach).  It's a small "button" that has a cap that is attached to him at all times (the balloon part is inside his stomach).  Yes, we change it out if the button gets old and no it doesn't hurt him at all.  It has a plug that keeps it closed when you do not have a tube/extension attached to it.  As you can see the tube is really narrow and the button is very small so it's not like we can just push a steak through it.  You are extremely limited as to the texture and consistency of food that can be pushed through the tube, past the button, and into his stomach.  Liquid of course being the easiest.  Doctors are very quick to put children on feeding tubes and yet there is very very very few ways to get them off the feeding tube.  ***hint:  Looking for a profession?  Become an experienced Medical professional that ONLY deals with getting children OFF feeding tubes.  You will make millions!!!  No lie.

When Noah was put on his feeding tube at 1 1/2 years old it was because he stopped eating orally and never really could drink orally anyway. This was a means to keep our boy hydrated and nourished.  We were given a choice of either pediasure (dairy based) or Bright Beginnings (soy based pediasure type drink).  Basically a high calorie formula.  How many "typical" 1 1/2 year olds do you know that is still surviving solely on formula or breast milk without any other type of food or drink given.  Not too many I am sure.   Why should Noah?  A question that haunted me since we left the hospital.

Have you ever read the ingredients on a can of pediasure?  Um...water, sugar, more sugar, stuff I can't pronounce, and even more stuff I have never heard of.  And this is what the medical field was telling me over and over and over was the best choice for my son.  I just didn't get it?  He was eating many types of baby foods and ground up dinners that my husband would make for the family.  He never once had an allergic reaction to any type of food including all those that they tell you to be careful of.  He loved spices and avocados and beets of all things.  Then BAM....insert gtube....and then take away all real food?!?  Can you see why I was so put off by forcing my toddler to now only consume formula.  It just wasn't right and I could tell that Noah's body also didn't agree with his new forced diet plan.  He got constipated every single day, he threw up more days than not, his reflux was horrible and his GERD/Sandifer's Spasms intensified.  He was always full of gas.  He was always crying during therapy or tummy time.  He didn't like to be hugged tight.  He was always sickly looking from always feeling like he needed to vomit of from constant bouts of vomiting.  He would wake up every single night.  Not always crying but usually tossing back and forth from discomfort.

We had to rework our lives and everyone who ever watched him to fit in his new feeding schedule that was so strict that with the slightest alteration you would be sorry to not have a puke bucket handy.  Here was his "formula" schedule that we lived by.

8am, 11am, 2pm, 5pm: 4 oz of formula dripped in by pump over 1+ hours while he was sitting angled upright to prevent puking or reflux.  Then he would have to continue to stay in that upright position for more than 30 minutes while we prayed he didn't puke.  Then if we were daring enough and had a towel handy we could then try to lay him down for a nap or to play on the ground and again say a prayer he wouldn't lose all that went in him and choke.  He never just lost a little bit.  If he gagged or refluxed hard enough he would have three rounds of projectile vomiting.  I am sure every inch of everything we own has been a victim by now.  Then we had to "try" to give him free water in between meals to increase his fluid intake and again hope he didn't lose it.  Then we also had to slip in two different types of medications to reduce the acid in his reflux so his throat wouldn't get damaged from all the vomiting.  We would have to line his crib rails, under his bouncer chairs, and under his high chair with towels.  We even had to keep a towel draped over the backseat of our car when he was sitting in his car seat.  If we won the feeding lottery he was able to keep that 4 ounces in him and he/we would have 1-1.5 hours to get in as much as we could with play or therapy or errands before we had to start the cycle all over again...every single day.  Those were good healthy days.  Toss in a running or stuffed nose, a cough, an upset stomach, constipation, teething, fevers, crying fits, too tight of highchair belt, or just too hot of weather and the whole process got much much harder and the rate of keeping in any of that formula would literally be an act of God. We just kind of expected him to throw up and it became a new norm for us and we had the whole Operation: Puke Patrol down and could do it with our eyes shut and one hand tied behind our backs.

None of this should be normal.  None of it should sound right.  None of it should ever happen.  Our lives should not be turned into fear of feeding our child and then sorrow for not being able to keep anything in him.  We told any medical professional that would listen.  All of his many many doctors.  Nobody would ever consider that it was the formula. All they did was make us change the type of formula.  "Try a non- dairy based one, try a soy based one, try a special anti protein one, ect."  We tried to listen to them but we knew...I knew! It's the formula that isn't working not my son's body. I am not against formula in general but for Noah specifically it just wasn't working for him and I needed to figure out what would.

a great book to get you started
I took a very controversial and highly debated route and switched Noah over to what in the tube world is referred to as "The Blended Diet"  BD for short.  Basically, real food, blended very thin, and fed through the tube instead of the formula.  Not rocket science but try finding one medical professional that promotes such a diet is like finding a needle in a haystack. Yes, many are intrigued with the idea of the BD and some will even give you the go ahead to try it.  However, nobody is really there to help you get started and you pretty much have to research it all on your own.  Most insurances will not cover a dietitian for the BD either.  Thankfully there are networking sites full of BD families and even a couple books now published that help with some of the in's and out's of starting and living with a BD. 

Not sure why doctors and therapists are so hesitant to learn and promote the BD.  A variety of reasons have been brought to light but no real definitive answers.  Some are too scared of causing their patients to have an allergic reaction.  Some are nervous that the families will not take on the full responsibility of the BD and harm their child's bodies.  Some are afraid parents will just throw in PB&J's or Mac and Cheese for every single meal and call it good.  Whatever the reason is I have not had a single doctor get excited about me even mentioning the idea of starting Noah on the BD.  So, I didn't tell most of them and really would only talk to his Dietitian up at Shriner's (because my insurance would not cover a dietitian) and she and I would work out the logistics  to the BD...because their are many.  She has been a lifesaver for me and has been the only person I could turn to for help coming up with recipes to fit Noah's specific needs.  Since meeting with her I have been given a few other food ideas by a couple of his doctors that I have admitted doing the BD with.  Not full recipes but ideas of different foods.  That has been helpful. 

So active these days
I will go into all these logistics in a separate post for those who might be interested. For those of you who are just looking for Noah updates I am proud to say that we are currently two months into the process of a blended diet.  We had to start slow and transition him (doctors orders) but now I wish, for our own situation, that we would have jumped in head first.  It has only been in the past five days where Noah has been on a full blended diet with little to no formula. 

This week alone Noah has made strides.  I mean that when I say it.  He is sleeping through the night completely.  He has found his voice and is really letting everyone know how much he likes to hear it.  He is so much stronger I can't even describe it.  He is consuming four times as much food per feeding than he was in half the time= more free time to play :)  He is so much happier, doesn't have really any gas, is going potty unaided daily, has energy like I have never seen before, and the MOST rewarding thing of all.  We are now FIVE full days vomit free.  We have been able to cut out one of his reflux medications and we can actually lay him down on the ground mere minutes after feeding him.

Yes, the process of a BD is tedious to start out but it has literally changed our lives for the better.  It has been one of the best decisions I have ever made for my son.  It's almost been a little miracle for my family.

****Update (one week after drafting this post) Noah has run into some major constipation issues. The motility of his GI tract isn't functioning properly.  I am pretty sure it has something to do with one of the foods I was putting in his BD.  Recipes have been adjusted, we have cleaned him out, we have started using Miralax daily again, and I now know what signs to look for to prevent future GI issues.  This should be a warning to all of you who chose to start the BD.  Make sure to keep them going regular.  If you find that their motility is slowing down then you need to take action immediately to prevent a total shut down..  Also, makes sure to add a fair amount of fiber to their BD.

I still stand by my last statement that the BD  has been a lifesaver and the best decision we have made for Noah.  Even with this past weeks hiccups.  Learning as we go :)

Tuesday, August 6, 2013

To Those Who Chose

This is my unofficial disclaimer to those moms and dads who share 50% of the same DNA as their Special Needs child(ren).  This post is different. This post has a very specific audience that I would like to express my gratitude towards at this time because I feel that they need to know as much as we do....

Since being handed my official "welcome to the special needs world" entry card I have been privileged to witness many acts of kindness, read many blogs, seen thousands of networking and forum posts, and made several wonderful friends.  There are so many emotions that swirl around and change from day to day for anyone dealing with any form of hardship in life.  The highs are high and the lows are low.  The one thing that stays constant is that for those who gave birth to their special needs child they do what they need to do, every day, to learn, understand, face, and grow each day with the news they were handed about their child.  Yet, we are not alone.  There are these additional angels out there. These are the angels that chose to be a major part, if not the most important part, in the life of a SN child and took on this role I thank you!

Through marriage, adoption, foster care, a friend or family member, no matter the chose to pick up your special needs entry card and slip it safely into your pocket and take on whatever highs and lows came your way.  You chose to be there for every sickness and smile.  You chose to endure every fight and phone call.  You chose to love unconditionally and stand hand in hand with this child that did not come directly from your I thank you!

Caring for any child is hard.  Caring for one who comes with 10+ doctors, over 50+ appointments each year, a medical history 5" thick that you have to memorize, a constant flow of onlookers, and a conclusion that the local hospital is your second residence is very very very hard.  It takes a special kind of person to take all of that on especially when you had a choice not I thank you!  

I want to say THANK YOU over and over again.  You may be a grandparent.  You may be a step, adoptive, or foster parent.  You may be a sibling or extended family member.  You may be a nurse or  you may be a friend of the family.  To the child you love you are their world, their lifeline and the one who holds a special place in their special heart...and they thank you!