Tube-feeding a two-year-old Whole365??

[Whole9SpecialMama]

Hello! My youngest daughter is two, and has been tube-fed since birth (expressed breast milk). Her relevant diagnoses are cerebral palsy (spastic quad), dysphagia (no swallow), and mild GERD (reflux). She is non-verbal and non-mobile. She is currently fed via G-tube, likely will be for life. She is small (17lbs) but healthy (her size is proportional, doc has no concerns). I have been exclusively pumping breast milk for her for two years (nursing for almost four!). I introduced "solids" by blending up real food, diluting with water or EBM, and administering via G-tube. I am now giving her some feeds of blenderized whole food and some feeds of just breast milk, about 50/50. Total daily intake has always been around 750-800mL (~26oz), with some extra free water in recent months. As my milk supply is reducing, I am looking to transition her completely onto the blenderized diet. My family has been quasi-Paleo (was strict during my 2nd pregnancy), but we just did our first Whole30 last month and LOVED it (3.5-year-old daughter included)! I don't see any reason why my youngest daughter shouldn't be fed strict Whole30 all the time once she is off breast milk. Why not give her only the healthiest food possible? I plan to blend her a full day of food and divide it into four(?) equal portions so she can tolerate the volume per feed.

My questions:

1. Is it okay to live "Whole365" (nothing is by mouth anyway) - an obvious yes, right?

2. Do I calculate meals using the same template (her tiny thumb of fat, palm of protein, ??? carbs)?

3. Can anyone give me some amounts for vegetables? Fruit? What about starchy or carb-dense veggies, how often and how much per serving/day? (I found I needed to eat some sweet potato at every Whole30 meal while pumping, otherwise I got really fatigued.)

4. Would blending just three meals per day be complete, or are snacks advised for this age?

5. Liquid is needed to blend. Other than water, blending with coconut milk would add fat/calories, but I'm concerned about daily use of the cans available to me (Canada). Our almond milk has carrageenan, tapioca starch, etc. Would I have to make EVERYTHING from scratch for her to be safe (she's so tiny/fragile)? (Our life is already pretty labour intensive with all the special needs - LOL.)

6. I have considered using organic whole goat's milk to top off my dwindling breast milk if necessary during the transition (to keep some "milk feeds", but I'd also like to know if that's even needed anymore.

I would really appreciate any guidance that could be provided. The whole medical community seems ingrained to use only commercial formula for liquid sustenance (first ingredient is corn syrup, then lots of chemicals, yuk!), so I've been virtually on my own since I insisted on feeding breast milk longer than 6-12 months, and now blended whole foods. She has thrived and surpassed so many grim predictions, and we believe good nutrition played no small part in that. However, folks here are not very familiar with tube-feeding real food, let alone no dairy, grains, or legumes. You'd think no sugar was a given, but it's not! (Easy energy and calories?) Despite her limitations, I want her to have the best, complete nutrition. Sorry this post was so long. Many thanks in advance!

[missmary]

First off, we aren't doctors and I know you will consult with yours, but here are my thoughts:

 

 

1. Is it okay to live "Whole365" (nothing is by mouth anyway) - an obvious yes, right? YES! The reasons not to do it have nothing to do with nutrition, only the social/psychological aspects of food restriction
2. Do I calculate meals using the same template (her tiny thumb of fat, palm of protein, ??? carbs)? Yes, although don't hesitate to give more if hungry.
3. Can anyone give me some amounts for vegetables? Fruit? What about starchy or carb-dense veggies, how often and how much per serving/day? (I found I needed to eat some sweet potato at every Whole30 meal while pumping, otherwise I got really fatigued.) A "fist-size" portion of carb-dense veggies at 1-3 meals is a good starting point.
4. Would blending just three meals per day be complete, or are snacks advised for this age? Three meals should be fine, but again, add min-meals when hungry.
5. Liquid is needed to blend. Other than water, blending with coconut milk would add fat/calories, but I'm concerned about daily use of the cans available to me (Canada). Our almond milk has carrageenan, tapioca starch, etc. Would I have to make EVERYTHING from scratch for her to be safe (she's so tiny/fragile)? (Our life is already pretty labour intensive with all the special needs - LOL.) Coconut milk is available in tetra-paks by mail order? or just use water and add good fats (coconut oil, ghee, animal fat)
6. I have considered using organic whole goat's milk to top off my dwindling breast milk if necessary during the transition (to keep some "milk feeds", but I'd also like to know if that's even needed anymore.] Not sure. If she tolerates goats milk well that is a good healthy food. you might want to check out Westin A Price goat milk and liver-based formula recipes for ideas.

 

I hope this helps. Mostly I just want to say: you are doing a very good thing here. Don't get discouraged if it isn't totally perfect in every way at first, take your time and make adjustments as you go knowing this is 100% better than the commercial stuff. no doubt about that.

[praxisproject]

If your doctor is after any particular supplements, you may be able to get these as a powder from a naturopath that could be added to the blend.

 

If your doctor thinks it would be okay, maybe you could do some bulk blending and keep some blends in the freezer.

 

Coconut milk will likely have far more nutrition than almond milk. We generally like almond milk for the taste. I'd skip anything with carrageenan in it.

[Whole9SpecialMama]

Thank you! Yes, I am finally in consultation with a good doc who supports breast milk and gave the okay for real food, no worries. He has approved of what I've been feeding her so far, but I am the type of person who needs very specific instructions to proceed and ease my own anxieties.

My daughter cannot really communicate (yet?), so it's a real guessing game to determine hunger and satiety. We will continue to monitor growth and weight to ensure enough calories. I just need a starting point that's a best educated guess.

@missmary: Could you please clarify suggested amounts of veggies per day (to start), other than the starchy carbs? Should I also add 1-2 fruits per day going forward? My other daughter eats 1-2 fruits per day, but she enjoys them and asks for them. One nutritionist had advised me not to mix fruits and veggies in one meal (digestion?), so now I'm confused about whether to add them to blends or not.

[missmary]

@missmary: Could you please clarify suggested amounts of veggies per day (to start), other than the starchy carbs? Should I also add 1-2 fruits per day going forward? My other daughter eats 1-2 fruits per day, but she enjoys them and asks for them. One nutritionist had advised me not to mix fruits and veggies in one meal (digestion?), so now I'm confused about whether to add them to blends or not.

 

On veggie quantities, I would think in terms of proportion. Imagine what a palm of meat+2-3 cups of veggies looks like for you, then reduce the amount of meat to her palm size and reduce the vegetables in the same proportion. I'm guessing maybe 1.5-2 cups would be good (including the starchy ones). Of course, blended spinach is a lot less volume than the same quantity of raw spinach, so use your best judgement. This might be a case where it is worthwhile putting your planned quantities into a calorie counter, just to check. Your doctor should be able to recommend an appropriate level of calories for her.

 

On fruit. Eating fruit with meals helps with blood sugar regulation, so Whole30 emphasizes that. There is a theory that eating fruit separately makes it easier to digest...I don't know much about the science there, but research food combining for more info if you want to go that direction.

[Whole9SpecialMama]

Thank you @missmary, this has been SOOOOOOO helpful! It also helps to know that starchy veggies count towards total veggie amount, as I thought it had to be extra (even for us). I'll ask the doc next week about her calories, but it will be useful to tell him what I've been doing or plan on doing (and for me to be clear on what that is!).

@praxisproject: I have been giving her a probiotic recommended by her doc, so could continue with that or hopefully introduce fermented foods (once I try making some!).

Many thanks.

[A_Whole_New_Me]

I'm so glad to read your update that you finally found a doctor who can advise you in tube-feeding your daughter.  It's going to be tough custom-designing a diet for someone who can't give you feedback on if she's hungry, if she needs more starches, etc.  My hat goes off to you for your persistence in helping your daughter thrive .

 

I agree with you that the ingredients for commercial tube feeding don't seem optimal to healing the body.  How many meals are you giving her currently?  If you're putting all of her calories into 3 meals a day, I'd be concerned the meals would be pretty large to tube-feed.  I wonder if juicing some of the fruits/vegetables would be a good addition; I'm not sure how much fiber your daughter needs, but there's a lot more fiber in the Whole30 than the pre-made tube meals.

[Whole9SpecialMama]

@A_Whole_New_Me: Thank you for another vote of support!

I'm currently giving her four feeds a day, the first and last are around 200mL of breast milk. still pretty low volume. She started with eight feeds over 24 hours (NICU), then I eventually cut out the overnight feeds and went to six slightly larger feeds, then to four when she tolerated that volume. It has been four for awhile, and she is still slowly growing. I expect the volume will increase as she grows, but will hopefully still be able to keep it at four feeds daily for all her calories. I cannot do much else while syringe-feeding her, so that's plenty. Plus three meals with my 3.5-year-old.

Would juicing require a juicer, or would a high-speed blender do the trick? I'll keep that in mind going forward!

[Mary Carmosino Beougher]

@A_Whole_New_Me: Thank you for another vote of support!

Would juicing require a juicer, or would a high-speed blender do the trick? I'll keep that in mind going forward!

I think I'd go with a high speed blender over a juicer. I have a Ninja and drop in veggies and fruit skin and all (I take out seeds) and end with something the consistency of a thin smoothie. Don't juicers take out the pulps and skins, taking out a lot of fiber, etc? At least, that was my understanding.

[Whole9SpecialMama]

Great, since I'm already using a Blendtec! I think the suggestion to juice was actually in order to remove the fibre and reduce the overall volume. I'm hoping there's no need to do so, and I can just blend the equivalent of the meals she would otherwise be eating by mouth. She should end up eating healthier than all of us by never having the occasion to "slip"!

[Whole9SpecialMama]

Okay - we are 100% weaned off of breast milk, and blended meals have been going well! Thank you to everyone here who helped support us through this transition. What I've been doing is feeding three meals of blended diet, then 150mL of organic goat's milk before bed, to match the volume and frequency she was already used to. However, the blend I've been making consisted of three meals' worth of food, but yielded four "servings", so she really has been getting 3/4 of three complete meals plus the milk feed each day. What I tried today, is to adjust the liquid to yield three slightly larger feeds (which she can probably tolerate now), and that would be three compete meals. So...I thought I could just serve them as a proper breakfast, lunch, and supper, then give her milk before bed.

What I'm wondering is whether I should/could drop the milk feed, either now or at some point. My goal was to be dairy-free once she was weaned, but I had also planned to be pumping breast milk much longer than two years (my health got in the way). My other concern was that if I dropped the milk, she would not be eating between supper and breakfast, which would be around 14 hours. Is that typical for a 2-year-old? My eldest was stil nursing at two, plus eating three good meals. Not much snacking, but the nursing was like snacking. She has stopped nursing now, but still mainly eats three good meals, and she fasts around 13-14 hours before breakfast. Just wondering what age or weight that becomes appropriate. My "tubie" cannot tell me if she is hungry. Well, she has been known to cry on occasion when I thought she was hungry, but most of the time she doesn't react to late feeds at all.

I'll be consulting a dietician this week as well, but she already sounded leery on the phone about me feeding my family AND my kids a Paleo diet with "absolutely no grains?". She mentioned there were nutrients I'd need to replace that were found in grains, like fiber, so I shared with her that vegetables actually have more fiber than grains and it's more readily absorbed. She said we would talk more at the appointment. She might not believe that dairy-free can be healthy too (I told her my daughter gets goat's milk), so I wanted a few other opinions going forward. I have no issue giving goat milk for another year or two, but I kind of want to know if I can ever cut out the 10pm feeding...would be nice to all get to bed at a good time one of these years. Please note: I will be giving free water between meals and for flushing after meals, for added hydration and to make up for the liquid I took out of the blend.

Thank you in advance for any suggestions!

[Whole9SpecialMama]

A couple of clarifications: The reduced liquid in the blends makes for a slightly thicker purée, which seems better for her in avoiding reflux issues. And the 10pm feed I wondered about possibly dropping at some point, when there are any interruptions or delays to her feeds (medical appts, etc.), can often end up being as late as 11:30pm or midnight - not fun.

[littleg]

I'm not sure if you've had that app't with the RD yet so I figured I'd chime in.  I'm a Peds RN and what I can say from my experience is that growth curve data (as well as other data I suppose) is used to determine caloric needs for these tube feed kiddos.  Of course this is usually easy for the RDs because its formula  So, your RD might want some information so that he/she can get an idea of the calories your daughter is getting.  Entering your typical "recipe" into Cronometer to get macro and micronutrient data would be helpful for the RD so she can see that real food (gasp!) has very high nutritive value...

 

These kiddos are also all over the map for feed schedules.  Some are on continuous feeds, some are tube fed at night, some are bolus fed every 3-4 hrs... Also, do you have access to a feed/flush bag set up?  You said you do free water flushes so I just wanted to make sure that you at least knew that they do make dual bags and you can set the pump to flush with water every hour for a certain amount.  

 

Granted most of my TF kiddos are not cared for at home but if ever had a parent who said "I blend up a paleo diet to tube feed my child" I think I'd hug them  Good for you mom.

[Whole9SpecialMama]

Thanks littleg! I met with the RD twice, and wasn't able to get any help, unfortunately. I had explained before we met that I did not want to waste both of our time, did not want to be told to feed her formula or give her dairy/grains/soy or anything that we are not eating as a family at present. I asked her point blank whether she would be familiar/experienced enough and willing to help me in feeding her a Paleo diet. She assured me she could and would. Well, after two sessions (and two weeks!) of me giving her all my info and reasons, answering all her questions (but getting NO answers to my questions), all she came back with was a nutrient analysis (she said it was good, a little low in Calcium). She then said that firstly, a blended diet of real food was not recommended by dieticians (commercial formula was best), and secondly, that she was not happy with the ratio of lower carb and higher fat (protein ratio was okay, but was higher than they recommend for her weight). She also said fiber seemed low, but since she poops 2-4 times per day (perfect consistency), she did not feel this was an issue. She said they do not consider coconut oil, for example, to be healthy, and that her only recommendation would be to feed her milk and grains, and to follow the Canada Food Guide/Health Canada guidelines! She flat out lied to me, and wasted my time. I asked her about adding sardines, canned salmon, or blackstrap molasses (for Ca), and whether she could at least help me with amounts or how to adjust my whole recipe (should I reduce protein?), and she said no. I was on my own if I choose to feed her Paleo. :-/

Perhaps as an RN, you can help me understand how to deal with such treatment from the medical community, when I'm only trying to do what I believe is good and healthy for my family. I would like someone to just help me tweak amounts, or confirm that what I'm doing is optimal for her. This is challenging, since most people suggest going by how you feel and not measuring everything or using numbers, which I have to do in her case.

Any suggestions for my situation? Referral to someone qualified that I can consult with? Anyone??

[littleg]

Unfortunately I'm across the border.  So I have no actual recommendations but I can say that everyone struggles to find practitioners like you are looking for.  I would go to a really big paleo site like marksdailyapple or something and just post there asking for suggestions - you might find someone in the same general geographic area.  There are a few websites that list "paleo" MDs but I don't know them off the top of my head, a google search will find them.  I am currently paying a ridiculous amount of $ out of pocket for a functional medicine doc (he is actually a chiropractor...) because I've had it with the MDs I see and their asinine advice - so you aren't alone.  Sadly.  As for the treatment you got - she is telling you what she learned in school.  She truly believes that grains and soy and infant formula made with corn oil are *good*.  It is unfortunate she misled you - she should have been more honest up front.  She probably just thought that you were some "hippie" and that after a meeting with her you would see the error in your ways

 

I would still enter your recipe into cronometer and see what is coming up - make sure she is ok on micronutrients and calories.  There must be info about the caloric needs of kids her age/weight on the internet for you to compare her daily intake to.  If she is low on calcium your ideas sounded good to me  Just make sure you blend up those sardines well so the bones don't clog her tube As a non-verbal kiddo the best data on her calories is going to be her growth.  For a while you may just need to wing it - you can always adjust.  In terms of food tolerances her poop and her abdomen and reflux will be the tells.  Good poop, no bloating, no reflux and she is tolerating things ok.  But you figured that out already since you noticed the thicker feeds help with the reflux.  Make sure she is sitting up after feeds too (you probably already do that).  

 

You should start a blog about this  You can't be the only paleo parent with a child with these kinds of needs - that way if I ever find a parent in your shoes here I can say "go check out W9SpecialMama's blog - she's got it all figured out !

[missmary]

I'm sorry I don't have any answers, just sympathy. I hate that the medical community is so behind and so stubborn! 

[ultrarunnergirl]

In regard to nutrients your child may not be getting (because she is not eating fortified foods) here are two informative pieces from Mark's Daily Apple to read before your meeting with your RD:

 

http://www.marksdailyapple.com/5-common-nutrient-deficiencies-and-what-to-do-about-them/

http://www.marksdailyapple.com/2-more-common-nutrient-deficiencies-and-what-to-do-about-them/

 

As long as you pay attention to these, she can still get everything she needs to nourish her.

 

Keep on keeping on!

[littleg]

Got a few things for you from the RD at the hospital today

 

http://www.oley.org/

 

Real Food Blends

Food Babe

 

And its Feeding Tube Awareness Week!

[Alexian28]

Sounds like you're doing a great job!  I make my daughter's coconut milk, it only takes about 5 minutes, and you could thin it out as much as you need to, if you're looking for an alternative to goat's milk that still has healthy fat.  I order the unsweetened shredded coconut in bulk online.

[TheDuchess]

  I don't have any advice- just wanted to say Yay You!!!!!  First off I put in about 3 1/2 years total breastfeeding my two kids and it is no small feat so cheers to a momma that is doing it with so much else on her plate.  The medical community- arghhhhhh I had to fight tooth and nail to breastfeed our eldest when he was in the NICU and my OB and his pedi were so un supportive I had to find new doctors.  The OB told me- after 6 weeks- that he (our son) had gotten all he could possibly get from breastmilk and it was time to switch to formula.  Our eldest has austism and I am getting ready to do a whole30/AIP for my own autoimmune issues and am going to take him along for the ride- I can already hear the gasps of horror from doctors, other moms, and teachers when they find out. 

   Your daughter is so lucky to have such a comitted and hard working mom and family who is doing everything for her and giving her the absolute best even though there is this more socially acceptable and convenient option being shoved down your throat at every turn (I imagine).  It is hard work and made harder by all these people constantly making you explain (and maybe even occasionally question) yourself.  I'm sending you a big virtual hug.  Is that super creepy since we are strangers- it's only virtual touching    Thank you for being such a wonderful parent- we need people like you to raise good kids so this world will keep spinning.

[Whole9SpecialMama]

Phew, we have had quite the wild ride this winter! My DD is now 28 months, and feeding has been going well apart from all the viruses and a few hospitalizations (she and my husband!). I continued to blend food even during admissions, which is NOT easy (hubby has epilepsy and can't drive). She has just been diagnosed with a seizure disorder as well.

I cut out goat's milk a couple of months ago, and she has been doing well. No reflux issues with thicker purées. I was blending up three meals and feeding them in 3.5 feeds (every four hours), but I'd like to feed her three complete meals (volume is perfect) and add one mini-meal. What do I add?? My 4yo snacks on apple with nut butter or we have some nuts, fruit, or sweet potato with ghee...is that what I should try to blend?

Please post any ideas for blended mini-meals...I tried giving her milk again last night before bed and it seemed to bother her (too liquidy). Was aiming to mimic nursing at bedtime. I will feed her a purée meal (supper) before bed instead, but add an afternoon snack. Should I try a fruit snack? Sweet potato, nuts, and some water, or blend with coconut milk? If I add almonds and water, won't that make a milk? Or blend food with goat's milk but make it a purée? What quantities to try? Aiming for 3-5oz purée.

We just got out of hospital again a few days ago (I rolled out of bed into ambulance at 6am, she was in full seizure and had aspirated. I hate nights that we do not have a nurse...we went to bed at 4am after she fell asleep...we cannot stay awake watching her 24/7...), so I'm just wanting some quick and easy answers because I am SO tired. She is otherwise doing very well! One or two large poops per day of perfect colour and consistency. Chubby cheeks, perfect skin, hair, nails, gorgeous smile.

My main reason to add a mini-meal is the spacing of her meals; I want to feed her every four hours during the day, last feed at bedtime, so she fasts around 10-12 hours overnight until water upon waking and then breakfast shortly after. She sleeps better this way, and it seems to do well for her digestion. I don't believe she needs reflux meds if we stick with purées. In hospital, she gets liquids (lying down), so they wanted to put her on reflux meds. But at home, we never see this issue anymore (since dc milk), as we feed her purées and always upright.

Thank you in advance for any comments or suggestions. Still nobody local to consult or troubleshoot with.

[Whole9SpecialMama]

SORRY! If I could delete my previous post, I would. It just occurred to me that I could add a bit more sweet potato, some nuts, fat, whatever I want...and then divide her blend into four meals (which would cover three meals and a mini-meal or snack). Duh! After more than a week of stressing and planning, somehow I only JUST thought of this. :-/ Need. More. Sleep!

[littleg]

Glad to hear things are going ok in the TF department - so sorry to hear about the other health issues of the family  Have you joined any internet support groups for TF parents?  The RD I work with said there were some on facebook - might be a good resource for you if there aren't any local groups.