Oral Adventure:Feeding and other Oral Aversions

Our Salty Sweet Battle against Oral Aversion, Calorie Intake, Tube weaning, and Proper Digestion 

I have mentioned this many times but our top two battles right now with Noah are his low body tone and his inability to drink any form of liquid while he is awake.  This post is going to go into detail describing the feeding methods we have tried/succeeded/failed/cried over/laughed about/and recorded.  I am not sure where to even begin but here I go...

Noah was feeding tube fed from approx. month 4-6.5 of his infancy.  It was an Ng tube (the kind that goes down your nostril to your stomach).  Now, 2.5 months seems like a skip in the park compared to all those who have had to endure much worse in regarding to tube feeding themselves or their children.  However, with Noah being so young when being put on the tube he gained all kinds of oral aversions and completely lost his ability to suck and swallow.  The muscles in his mouth went practically unused during this time except for a pacifier or the 1ml of liquid we were approved to drip into his mouth a few times a day.  I have been told by some doctors that Noah was never really able to suck and that his current struggles were always there.  Yet, I have also been told the complete opposite from other doctors.  From our observations I feel that Noah would be able to take a bottle if he had never been forced off it in the first place.  I will not go into detail about our feeding tube experience since I have already written posts (vented) about it  Here and Here but I will now proceed to talk about what we have done since this time and how Noah has been able to get where he is today regarding his eating and calorie consumption.


Noah has had four swallow studies with his final one showing that he is no longer aspirating as of last week.  He has had a throat xray (different than a swallow study) that showed he needs his adenoids taken out next April.  He has also had an upper GI barium study done that showed in addition to his severe reflux he also has a hiatal hernia and really fast stomach emptying into his intestines which makes his body not absorb as much as it should and is working against him in weight gain. 

We are currently working with a Speech Therapist through our insurance as well as an Occupational Therapist that focuses on feeding techniques through Early Intervention.  Both have completely different techniques but we have learned to combine the two and incorporate our own techniques to work with Noah.  So far I think we have made some major progress. 

Our 10 Techniques to help Noah's Oral Aversions & Calorie Consumption

Right after Noah was put on the tube and no longer nursing or taking a bottle he started to no longer want anything near his mouth or in his mouth at all except his pacifier.  We used many items to get him to once again accept things in and near his mouth.

1. Summer Infant Dr. Mom Gentle Vibrations Toothbrush

This toothbrush comes with two different attachments and only costs around $10-$20 depending on where you purchase it.  I bought mine off Amazon.com.  At first we kept the vibration off and would wrap his fingers around the toothbrush for a few days.  Then we did the same while the vibration was turned on.  Once he got familiar with it in his hands we moved to his shoulder for a few minutes of play and then his chin and cheeks.  Once he was ok taking the stimulation on his face we inched closer and closer to his mouth.  Today this happens to be one of his favorite toys and brushing his teeth has become a game he really enjoys.  I also happen to feel that this is the number one cause of him losing his oral aversions...among other things.

2. Baby Wash Clothes.


You know, those really cheap thin pieces of fabric they call wash clothes but in reality they are more like dryer vent blockers.  Wrapping your little finger in one of these and wetting it with a variety of different tastes like milk or juice or food helped Noah get used to flavors while still getting the same texture each time with the cloth.  I started by twisting the fabric to form a small piece that could easily be inserted into the side of his mouth for him to gum on it.  Of course you have to hold this the whole time so they do not choke.  Now that he is teething we even freeze applesauce and have him chew on the frozen fabric to sooth his sore gums.

3. Different Shaped Teethers :
We liked teether and gummers more so than just the typical teething toy or ring because these came with bristles or textures and were small enough to move around to different parts of the mouth and across the tongue to help reduce the gag reflex.  Here are a few of our favorites.

Nuby Gum EEZ

Baby Buddy's 1st Toothbrush

Zo Li Gummy Stick                                                                            RaZberry Teether

4. Kissie Lips
Exactly what you think it is....kissing his lips...and often.  Everyone loves to kiss babies but actually kissing his lips or making lip smacking sounds near or on his lips with my own lips helped him get past the aversion of sound and touch near his mouth.  I also would personally eat chips or loud sounding foods in my own mouth but near his so that he would get used to the different sounds that could come from a mouth.  He hated it at first but after a week of chomping near him and this aversion was gone.  

5. Momma-Birding (this one I get embarrassed about but you do what you have to do, right!) :)

It all started one day when Noah was about 10 months old.  He is not a strong chewer and in fact even those baby puffs were too much for him to handle.  He just refused to make the chewing motion with his mouth.  My husband made me breakfast that included bacon.  I was holding Noah on my lap and decided to just touch the bacon to his lips to see if he would like the flavor (which I do with everything all the time starting at 4 months of age).  I don't put the food in his mouth but just touch it to his lips to see if I can get his tongue to dart out and touch/taste the food.  I started to eat the bacon myself and noticed that bacon really gets the saliva glands going big time and bacon actually mushes up pretty well too.  So, I literally dipped my fingers into the mush ball in my own cheek, I pulled out the smallest of wades and I stuck it directly into Noahs cheek.....and he ate it!  I was in shock.  Not only at the disgust of the situation and the fact that I actually just did that but Noah chewed!  So for the next hour I proceeded to chew bacon for my son and feed it to him in small pieces.  He loved it and it was packed with calories. At 12 months old we tried pulled bbq pork that we blended every so slightly so it still had a ton of texture.  He loves it, chews it, and this is the one thing we think started to build the muscles enough in his mouth to start chewing other foods. 

6. Dissolveables:
You first want to start out with those baby puffs you can find in the baby isle that dissolve within seconds of them touching your tongue.  They can be the fruit ones or the ones that resemble adult cereal but make sure that you start off with the kind made for babies as these will dissolve faster.  I also would break them into even smaller pieces to start off with especially if your child has a really sensitive gag response.  After they can devour these little gems you can start to play with the other steps of baby biscuits or cookies.  Then you can advance to adult foods like cheeto puffs, veggie stix, wafer cookies, or soaked pieces of adult cereal like cheerios.  It is a slow process but it has worked for Noah.

7. Sweet vs. Savory:
Noah is not a fan of sweet things including fruits.  He never has been.  The only thing that I know he will not gag on right off the bat is applesauce...so that is where we started.  We start off feeding him savory foods and then after a few bites we will add a tiny dab of fruit to the same spoon and then gradually cut back on the savory item on the spoon while increasing the sweet item.  We also have found that by adding bold flavors to his foods he will consume much more.  Salt, spices, condiments like soy sauce or ketchup or pickle juice.  A different bold flavor of something savory will get his mouth watering again and he will consume so much more in one sitting.  We start off with plain baby food or blended food and when he gets tired of it we add a pinch of Mrs. Dash or a dribble of salad dressing to the food and he starts to enjoy it and will eat more.

8. Calorie  Packing Options:
Stuffing calories into a little guy is one of the hardest things I have ever been challenged with in my life.  He can't drink while awake and as he gets older he is taking less naps so sleep feeding is getting harder and harder.  Yet, he still needs calories and still needs fluid.  Well, every type of food has liquid in it so we have had to adapt to adding more fluid in with his foods but still making them thick enough that he will be able to eat the food easily.  He is still on formula but we add an additional scoop to each bottle.  He also still has to take thickener in his bottles so that also adds calories.  When he is having a really bad eating day we will add baby food banana to his bottles or we opt for children's pedasure drink.  You an also do a high calorie milk (or soy, hemp, almond milk) and add carnation instant breakfast packet to it for packed calories.  There is also a powder called DuoCal that you can purchase to add calories to pretty much anything but we have found other options that are not so expensive.  Baby foods have at most 120 calories and that is in a stage 3 food that most children gag on because of the inconsistent texture blends in stage 3 foods.  We chose to take table food, blend it using baby food as the mixing agent, and then adding some type of really high calories item to the dish that will help with flavor in addition to calories.  These items include avacado, olive (other) oils, coconut milk from the can, whip cream/heavy cream, cottage cheese, yogurt, coconut oil, bacon grease, meat products that blend well, banana, sweet potatos, ect. Pretty much the highest calorie items that most people do not keep in their homes because they are trying to watch their own figures.  Table food hands down will have a substantially higher calorie and fat ration than any form of baby food will.  We use a baby bullet machine and it will blend any table food into the perfect smooth texture you need.  If you are in a time pinch you can quickly make a frozen meal and blend it.  Usually high in sodium but we have found the healthy choice frozen meals will contain a lot of vegetables, blends down to the smallest of portions, and will provide a really high calorie meal for your child.  If you really want to get into the blended diet there are so many websites and forum groups that go into detail on the different kinds of items you can add to your foods for organic and healthier option down to cost saving alternatives.  We are all over the board and have tried pretty much everything out there to see what Noah likes best and what will provide him with healthy high calorie options.

9. Bottles and Alternatives:
Our #1 struggle area and the one area we are still seeking help and advice on since we cannot seem to get Noah to suck on any form of bottle.  Nor can he hold liquids in his mouth at all unless they are the consistency of pudding and that pretty much defeats the whole point.  We have literally purchased almost every single bottle, nipple flow, sippy cup, honey bear cup, training cup, cut out cup, bottle top alternative there is on the market and to no avail he still is unable to take any form of liquid while he is awake.  The second he slips into dreamland he can suck a 6-8 bottle dry in 10 minutes flat with no problem.  Obviously this shows us that he has the ability just doesn't have the skill to do it without his natural instincts and reflexes taking over for him.  This poses a major problem for us as he gets older and he is starting to take shorter or fewer naps.  We are barely getting 21 ounces into him daily of calorie packed formula but we do know he is getting additional fluid in the food he eats during the day.  We have tried different flavors and consistencies of liquid, we have tried different kinds and textures of thickening agents, We have even gone as far as recently trying bottles/nipples specifically made for children with cleft lips/palates.  Yet we still cannot get him to take liquid awake.  The second I find what works for him I will post it but for now you can see all the areas we have tried and maybe one of these ideas/options would work better for your child. 

10. Its an All Day All Consuming Process:
We could easily put Noah back on a feeding tube and in fact his special needs pediatrician tells us that he is just barely meeting the threshold before we will be forced to put him back on one.  However, we personally know what it was like to tube feed him and have heard so many friends fight an even bigger battle trying to wean their children off the tube or the complications that have come from surgically inserting a feeding tube directly into their stomachs or intestines.  We have opted for our son and our family to work endlessly every single day to help Noah win this battle on his own.  Yes, it tests our patience and we cry many days from pure exhaustion.  Yes, it is hard...but so far it has been worth it.  I might not notice it today but all I have to do is look back on where he was a year ago...or even a month ago and there is progress there.  Small but still progress.  It keeps growing and so does our knowledge and know how.  We try new things daily, we research things weekly, and we never give up...ever because we know he can do it and we know that we can do it no matter how exhausted we are.  If we get to the point where Noah's doctor tells us it is time to get a feeding tube we will not put our sons health on the line and we will get one.  Until then we will continue to fight the battle and hopefully one day we will win.

***Bonus technique (Dum Dum Suckers):  Recently our OT had us take a small dum dum sucker and get Noah to dart his tongue out of his mouth to touch the sucker.  Once he gained a desire for this sucker we then would put the sucker in his cheek and pull his cheek outward to get him to try and move his tongue from side to side inside his mouth (this is called tongue lateralization).  You can play all around his mouth inside and out with this sucker and it will help his tongue to get stronger and also explore the other areas of his mouth.  This techniques not only helps with tongue movement but will also eventually help with speech.  It also made Noah hungry because it got his saliva glands working.  (make sure to have a towel or bib under his chin cause they will drool a ton during this exercise)

Noah is currently 15.5 months old.  He weighs 22 pounds 10 ounces.  He is 32 inches long.  Every time we see a doctor he grows longer putting his BMI lower and lower.  Currently his BMI is at a score of 89 and his doctor tells us that a typical child needs to be between 90-100.  One point off but that is huge in the world of special needs children.  If we can maintain this 89 we can keep him off the tube but if he drops by our next visit we have to rethink the feeding tube situation.  If you look at a picture of Noah all you see are cute baby rolls and a round plump face.  Most do not understand that he is underweight because you can't see it.  He looks so cute and chunky because he is so low tone that his muscles are are weak and that makes him look the way he does.

Winning any battle with oral aversion or eating is no easy feat and one that should be celebrated even for the smallest of wins.  He ate a cheerio and didn't gag...Win!  He took one suck from a bottle and didn't cough it back out...Win!  He ate four whole veggie stix...Major Win!  He ate a 300 calorie meal...You just won yourself an Oscar!  Learn to celebrate these wins and that is what will keep you going.  Every day there will be one win no matter how insignificant it might seem. He didn't throw up..he didn't gag....he made the chew motion...or it could be as simple as he let you touch his bottom lip without pulling away.  The steps have to start some place and the only way you can move forward is by continuing to take these steps. 

Good luck on your own personal Oral adventure and know that if you need help there are many Facebook or other web based groups out there that can help you.  If you need professional advice please contact your pediatrician and they will be able to guide you in the right direction.