Feeding Tube Awareness Week 2016

Happy Feeding Tube Awareness Week!

Let's jump right to the point of my blog post this year.

"A child won't starve himself."

LIES

You hear it everywhere.  In moms groups.  In parenting magazines.  In viral internet articles.  From your own mother.  And, as I can attest, from your own pediatrician.

I'm telling you, they're wrong!

What they SHOULD be saying is "A healthy child won't starve himself."  Unhealthy children do it more often than you would think, and in those cases, thank heaven for feeding tubes!

I'm not here to tell you what to do about your 75th percentile child who seems to live off of milk and quesadillas.  Sure, I have a lot of tips for picky eaters, but let's save that for another day.  The majority of those picky eaters will be fine.

Today let's talk about the many reasons why a child will legitimately starve, to the point of weight loss, or at least no (or very, very, dangerously slow) weight gain.

• First, the one that encompasses many, many reasons:  it's less painful to starve than it is to eat.  Let that sink in a little.  My baby would have rather died a slow and painful death than eat.  Eating just hurt too much.  There are many reasons why eating can hurt, and for Caleb and Russell it was because they were reacting to foods that caused tummy aches, nausea, bloating, etc.
• Then there's the cognitive cause.  Some babies are born unable to swallow, chew, etc. due to anomalies in the brain, such as cerebral palsy.  Some brains literally don't tell the body that it needs food.  
• Then there's the anatomical cause.  There may be strictures in the esophagus, making it hard to get food down.  A tongue-tie, making it hard to swallow.  An uncoordinated swallow, causing aspiration.  A loose hiatal sphincter, causing painful acid reflux.  A congenital heart defect, causing early fatigue while eating.
• Then there's the mental side of it all.  Things like tongue ties and reflux and an uncoordinated swallow and intense sensory processing problems can cause oral aversions so severe that children will starve themselves.  Most parents know how hard it can be to get their kid to take medicine, but imagine your kid having so much anxiety over putting medicine in their mouths that they actually throw up at the thought of it.  Now imagine that happening with water, or your baby's bottle, or food that looks or feels a certain way.  It can be pretty intense.
• Then there's the hundreds of other medical reasons, many of which go undiagnosed for many kids.  I know a kid with kidney disease who requires a huge amount of fluids to keep his kidney happy, and the only way to get the fluid in him was through a feeding tube.  Some kids have such extreme hypoglycemia that they can't go all night without food, so they get a tube for that.  There are so many reasons!  The biggest factor in Caleb needing a feeding tube was his poor GI motility.  His body just doesn't digest food fast enough, so he always has food in his stomach, making him always feel full, even when he's only had one snack all day.  His body was literally starving to death, but he absolutely would not eat because he couldn't fit anything else in his tummy.  When he got a feeding tube, he would throw up half of what we fed him, because he was always full of formula.  Now that we found the medication that works for him, throwing up is a thing of the past.  But he still can't eat enough on his own to grow.  We don't know why, but we do know that his feeding tube still keeps him alive.  And there are so many kids in the same boat as him.

Well, there are just a few reasons off of the top of my head that explain why some people need feeding tubes.  I'm sure there are plenty more.  But rest assured, if a child has a feeding tube, the parents have tried everything imaginable to get them to grow (yes, even putting butter on everything, or serving ice cream at every meal).  Doctors don't go handing out tubes to every kid who doesn't eat his veggies.  So instead of questioning the parents' diligence, or knowledge, or parenting skills, think again about the many underlying reasons why a kid really will starve himself.  Then give those parents a pat on the back.  Coming to the decision to tube feed your child isn't an easy thing to do, but at times it is necessary, and then it's an answer to those parents' prayers.  

If you'd like to learn more, you can visit http://www.feedingtubeawareness.org/

To see a video of how we gravity feed Caleb through his feeding tube, go here.

For pictures of many of the feeding tubes Caleb has had, go here.

Soy Trial

After about a 6-month soy trial, Caleb starting to complain of daily stomach aches.  After troubleshooting ("are you hungry" "do you need to poop?"), he would still feel a little pain, so it was time to scope!

Since eosinophilic reactions occur in response to food proteins, and oils and sugars don't have proteins in them because they're so highly refined, Caleb has always been able to have soy oil and soy lecithin.  (Some very sensitive people can't have them, but we discovered that Caleb can.)  So the only things that he eats that have soy proteins in them are a few brands of granola bars (his favorite snack), soy sauce used in Asian food (which we use a lot), and a few odd things here and there.

The biopsy results are in and Caleb IS NOT reacting to soy!  So that's GREAT!  But the pathology report also showed some odd things ("fragments of antral and fundic mucosa with focal foveolar hyperplasia and elongated pits" in his stomach, and " mild basal cell hyperplasia, mild papillary elongation, and mild spongiosis" in his esophagus...don't ask me what any of those words mean!).  So even though the biopsies didn't show yeast, we're going to treat him for a yeast overgrowth, just for good measure, since he's been on daily antibiotics for 3 years.

If that doesn't take care of things, we may have to consider whether or not Caleb has a good, old-fashioned intolerance to soy, and think about removing it from his diet.  I'm hoping it doesn't come to that, but his comfort is a high priority!

It's a little crazy to think that Caleb's diet now is how it likely will be for the rest of his life!  That is:
*eosinophilic reactions to dairy
*eosinophilic reactions to eggs, but without symptoms...he has now passed two scopes while eating limited amounts of eggs
*behavioral reactions to wheat...we had to stop the trial before being able to scope, because his behavior was effected so negatively.  Maybe some day, when he's more mature, he can trial wheat again.

It's amazing how far he's come from the days when we could count his total safe foods on two hands!

There's a new restaurant in town called Chi-Ku and everything on the menu is Caleb-safe!  It's kind of emotional seeing Caleb choose whatever he wants, and then actually eat it.  It never gets old watching him stuff his face!

Russell is 4!

Happy 4th birthday to Russell Sprout!

Four just seems so old, doesn't it?

Here is what Russell is like these days:

• He weighs 28 lbs 1 oz, which is around the 10th percentile.
• He measures 38.5 inches, which is also around the 10th percentile.
• He wears 2T clothes.
• He's obsessed, I repeat, obsessed, with animals.  Pygmy hippos, regular hippos, and rhinos are his favorites, but there isn't an animal that he doesn't like.  Sometimes he says he doesn't like "bad" animals (aka, predators), but most of the time he's still a fan.  
• Loves to tell jokes.  His most common joke goes like this: Why did the chicken cross the road?  To make friends!
• His favorite lunch is hot dogs and steamed carrots.  The only food he doesn't like is avocados.  He's a very adventurous eater and even enjoys spicy foods.  If his picky side ever surfaces and he starts refusing foods (it only happens when he's in a bad mood), we just remind him of our family rule:  We will put the food on your plate, but you don't have to eat it.  He always ends up eating it anyway!  He just needs to have a little control, that's all.
• His favorite snacks are fruit leather and a piece of bread.
• He can zip his own zipper, but has recently convinced himself that he can't.  Same goes for doing up his own car seat buckles.  
• He wakes up early (ugh) and makes his own pop tart for breakfast (nice).
• His hair is wavy and pretty thin.  I think he likes being the blond one in the family!
• He is very thoughtful and is great at sharing with Caleb.  
• He adores his baby brother and knows just how to talk to a baby.  He always makes Zach smile when he interacts with him in any way!
• He is very, very...shall we say "strong-willed."  Ok, ok, he's stubborn.  Sometimes he'll have a fit over something small, like when we ask him to clear his plate, and it'll escalate to needing to scream it out in his room for 20 minutes.  But what he doesn't know is that his mom will always be more stubborn than him.  I learned a long time ago that one key to parenting is to be more stubborn than the child.  ;)  He's not going to get away with anything on my watch!
• The most common source of distress (read: tantrums) for Russell is when we request that he change out of his pajamas.  He strongly prefers to wear pajamas all day, and refuses to wear clothes that aren't "comfortable."  I'm not sure if I should pack up all of his pajamas and make him sleep in regular clothes, or just choose not to fight this battle and let him wear pajamas all day every day and hope that this is just a phase.  I do let him wear pajamas most of the time as long as we're not leaving the house...after all, I would do the same thing every day, if I could.  ;)
• At times, when he's having a tantrum, I've been able to say to him, "Russell, do you think you'll get what you want if you cry?"  And he realizes that crying won't work on me, and he stops.  Clever little manipulator.
• He is also very clever in other ways.  He makes the most witty jokes, and notices the most obscure details.  I love that about him.
• The dentist has been telling us that Russell has a small mouth and his teeth are close together and that he needs to floss better than other kids his age (which isn't a problem, Russ loves flossing) and that he'll need braces.  Yes, we knew when our kid was three that he'll need braces.  Real fun.
• He has told me many times that he doesn't like being called Russ or Russell Sprout.  Only RUSSELL and SPROUT.  I still call him Russ all of the time, and he never corrects me, but if you have that conversation with him, he'll tell you he prefers Russell.
• He gets a lot of compliments from strangers on his eyelashes.  Somehow all of my boys have lovely eyelashes.
• He is very attached to Baby Bear, his small stuffed black bear.  He sleeps with him and brings him places when he's nervous (like to Church) and even uses him to wipe his tears.  Literally.

Russell, I'm glad that you're making up for your difficult infancy by being a wonderful preschooler.  You are full of whit beyond your years, you have an amazing brain for storing animal facts, and you are one of the most caring, giving, and gentle little kids I've ever met.  Russell, never change your gentle ways or your goofy personality.  We love you exactly how you are!

And now for an interview with Russell:

Crazy Kid Quotes

Russell--Mom, what are those rat things that aren't wearing any clothes?
Me--Naked Mole Rats?
Russell--Yeah.

Caleb--Mom, I was watching you from behind when you were going up the stairs, and I thought, even from behind you look like a princess!

Caleb, thinking to himself as he tries to figure out where I am--Where is my beautiful mother?

Caleb--You eat your eye boogers like me?!  Mom, Russell eats eye boogers like me!!  (while I try not to puke)

Caleb--I like playing with Chelsea because she's really easy to catch.  I like playing 'boys chase girls' on the playground.  Mom, we should play that, then we could chase you!

Russell--Your eyes look like sunshine.

Russell--I can spell BYU!
Me--How do you spell BYU?
Russell--B/Y/U!

Caleb and Nate went into a restaurant bathroom and they were out of toilet paper.  Caleb said, "I'm going to do something that will make them so happy!" and he went to the cupboard underneath the sink and pulled out a new roll of toilet paper.  He then put the toilet paper completely on the holder and Nate told him, "That was so nice of you!  I bet they'll really appreciate that."  Caleb replied, "I do what I can."
[Caleb always voluntarily puts the toilet paper on the holder at our house.  Always.]

Russell--How does Santa know what toys to bring me?  [He was concerned that Santa wouldn't bring him "kid" toys.]
Me--Well, I guess it's because Santa knows everything.
Russell--Like girls do?!  [Caleb and Russ often ask me how I know so much, and I tell them it's because moms know everything.]
Later that day, I told Nate about what Russell said and Caleb asked what we were laughing about.  I told him the story, and he didn't laugh.  I asked him if girls really do know everything, and completely seriously he said, "No, but moms do."  I've trained them well.  ;)

Caleb wrote me a note that said, "I love you, Mom."  He told Nate that he wrote it because I was being mean and he wanted to show me how to be nice (I kept getting after them during quite time because they were being anything but quiet!)  That night, I made them cookies.  When I gave them the cookies, I said, "I made you these so you can't ever think I'm a mean mom."  Russell said, "You should make us cookies every day so we don't ever think you're a mean mom."

Russell--I want all the food in the whole house!....So I can have a tummy ache!

Russell--Why did the chicken cross the road?  To make friends!

I got the hiccups one morning and Caleb told me, "Mom, the way to stop hiccuping is you hop on one foot in a circle while counting to ten."  I asked him where he heard of that and he said, "I thought of it in my head."

Russell--Mom, you have to eat a pineapple so you won't have hiccups.  [Apparently he got that from Mickey Mouse Clubhouse.]

Zachery--laughs when I hiccup.

When I told Russell that pencils work in outer space, he said, "Yeah, and you can play connect-star.  Like connect-the-dots."

Russell--(holding up a twizzler) I think these should be sucky-twizzies, not "twizzlers" because they don't TWIZ!

Russell--I feel sad for flies, because chameleons eat them, and so do spiders, so they might go extinct!  [No one else in the world is concerned about flies going extinct except my Russell Sprout.]

Russell--Guess what?  The Gila monster, they have a venomous bite.

Caleb--Isn't is sad that sometimes people kill pigs to eat them?  Is that why farmers are around, to save the pigs?  [LOL!  I can hear my granddad, a pig farmer by trade, turning over in his grave.  We need to move to the country STAT!  These kids need to be taught some life lessons!]

Caleb--Isn't that crazy that so many people were praying for me?
Russell--Yeah.  And they didn't even know you!
Caleb--Yeah.  Some of them did.  And I'm glad, because I didn't want to have heart surgery.
(I told him recently about how he almost had heart surgery as a baby.)

(Russell was playing with his animals and a shoebox, pretending that it was Noah's Ark.)
Me--Wow, Russ, there were t-rex's on Noah's Ark?
Russell--Yeah!  And then they ATE HIM!

Russell--Mom, what's a "dame?"  (from BaBa Black Sheep)
Me--A dame is a lovely lady.
Russell (thinking...)--Mom, you're a dame!

Caleb--Feel my heart!
Me--It's pounding!  Maybe you should take a break.
Caleb--No, I don't want to!  It makes me feel alive!

Russell--Mom, I love you 100!  Daddy, I love you 39....

Caleb--Did you know what?  Firemens even break stuff, that's why they like their jobs so much.
[Turns out that's exactly what the firemen at Caleb's field trip said...but it was still funny coming out of his mouth!]

Zacher is Half a Year Old!

Happy six months to this happy boy!

At half a year old, Zachary:

• Weighs just about 16 pounds and measures 26.3 inches.  That's in the 21st and 33rd percentiles, respectively.  His head is in the 44th percentile.  He officially weighs as much as Russell did on his first birthday!  Zachary has more than doubled his birth weight, which is pretty incredible to me (supposedly that's how healthy babies roll!).
• Wears size 2 diapers and size 3-6 month clothes.  Since his brothers were born in the winter, and he's the same size as them when they turned 1 year old, he fits all of their winter clothes.  It's ideal!

• Looooves rice cereal, doesn't love applesauce (but still eats it, although somewhat grudgingly), and has had bananas once, and...LOVES them!  (Although, his cheeks have been beet red since eating banana...so that worries me a bit.)  He's also a fan of munching on baby mum-mums.

•  Also loves eating his feet, but only realizes they're available for eating when I'm changing his diaper.

•  Holds his own bottle, which is a first for me!  I still hold it for him often, because he can't do it flawlessly yet, but mostly because I enjoy snuggling him while I feed him.  :)

• Still nurses before every bottle feeding, which is time-consuming, but I do it because it's best for his tender tummy.  Also, since dairy formula causes bloody stools and soy formula causes extreme spitting-up, he drinks alimentum, which is crazy expensive.  So having an ounce or two of breast milk at every feeding helps a little.  But the good news is, he seems to be doing ok with alimentum, so we don't feel the need to desperately seek out donor milk like before, which is nice!

• Loooves our dog and cat.  And they love him.

• Gives kisses!  And they're real kisses, too, not just "I'm hungry so I'm going to eat your face!"

•  Is caught sucking his thumb every now and then, but not often.  He doesn't take his binky often any more, either.  Usually just when we're out and about and he's tired but too overstimulated to fall asleep on his own.

•  Sleeps like this at least half of the time.

•  Really enjoyed that time that I let him teethe on a carrot.

•  Fits in with his crazy brothers!  One thing's for sure, my kids don't lack personality!

•  Is a serious pro at sitting up.  I don't remember the others catching on this fast.  He's just a natural.

•  Is just plain awesome when we walk the big brothers to school.  Zach is very content to be strolled around the neighborhood.

(This is his extremely happy face...I never catch it on camera because it's a whole-body smile and it's always blurry.)

• Is so insanely happy almost all of the time.  All you have to do is look at him and he'll flash you a gummy smile.  I think he's got a little ray of sunshine hidden in his chest and it always wants to come shooting out.  This boy really does make me happy when skies are gray!

• Only dislikes one thing: having his nose wiped.  He doesn't even mind having his face cleaned, but his nose?  NO WAY!
•  Blows raspberries with the best of 'em.  This is him practicing his duck face.

•  Is a pretty great snuggler.  He's content to let me squeeze him tight every day.  I love it.

• Is really good at pivoting around to face where he wants, and is soooo close to crawling!  He gets on his hands and toes often, as well as his hands and knees.  He sometimes seems frustrated with his inability to move, so I think it'll be happening soon!
• Isn't very vocal (it's weird to have a quiet baby, after having my first two chatterboxes!) but does sometimes say "daw-daw-daw-daw."  Not "da-da-da-da," but "daw."  It's cute.
• Strangers call him "Blue Eyes."  I kinda feel like it's a travesty to not dress him in blue clothes.

 planking

getting ready to crawl

Caleb is SIX!

I seriously can't believe that Caleb is a whole six years old!  That just seems so old to me!  Here is what Caleb is like at 6 years old:

• He weighs 33 lbs 5 oz.  That's 5 ounces less than he did on his fifth birthday.  :(  He got up to 34 lbs 15 oz in February, and we tried an informal tube wean during the summer, since he went through a phase where he cried every time we needed to give him formula, saying he just wanted to eat by mouth.  He is doing a fantastic job eating orally, but even with a bolus of formula when he's asleep at night, he just can't eat enough to grow.  So now we're stuck with the perpetual dilemma of tube-feeding: trying to give him enough formula to grow, but not so much that he's always so full of formula that he's never hungry.  I hate having to pick between a kid who eats or a kid who grows.  It seems that we just can't have both.  :(
• Measures 42 inches tall.  I don't have a record of his height when he turned 5, but he seems to be a whole lot taller!  
• Wears 4T and barely started wearing 5T clothes.
• Makes friends easily at school.
• Has a hard time handling frustrations.
• Loves to sing.
• Wants to be a paleontologist when he grows up.  I made him this paleontologist cake for his birthday, with a dinosaur and dino eggs hidden between the layers.  He loved it!  It was also gluten-free (this recipe, but I subbed in an all-purpose gluten-free flour) and dairy-free, to accommodate Caleb's dietary needs, and also happened to be free of the top 8 most common allergens!  And it was actually pretty fast and easy to make and decorate!  Win-win-win-win!

• His favorite color this week is red.  He has never been able to decide on a favorite color, so we'll see if this sticks!
• He is very indecisive.  Whether it's picking a favorite color or a piece of Halloween candy to eat, it takes him forever to decide anything!
• He is coming along well with math.  The other day, after being tucked in bed, he called me back to his room to tell me that he had counted to 300.  Just yesterday he asked me what 6+6+2 was.  I asked him if he knew, and he thought for a minute, then gave me the correct answer.
• He is doing quite well with reading, too.  He can read a lot of things by sight, but he doesn't feel confident enough to sound out words (even though he knows all of the sounds of the letters).  He can sound out words, but most of the time he just figures out what the words say based on the context and pictures on the page.  I don't see any problems with that!  Although it would sure help if he would just start sounding them out.
• His teacher said at parent teacher conferences that he is doing great in school.  He is nice to everybody (which is what's most important to me!) and he scored as high as possible on the testing she has done (basic stuff, like being able to identify all uppercase and lowercase letters).  She also said that his attention span is completely normal, hallelujah!  
• He has started spelling and writing his own words:
  
   "Russell: I
  love you Caleb.  To Caleb." (He was writing a note from Russell to himself, having Russell tell him he loves him.)
  
  

"[Cat picture] your a a god bhyr," when interpreted means: "Captain Hook, you're a good behavior."

(Looking back at this, I should have let him finish putting on the "ll" at the end before taking the picture.)

• He has a curl in the middle of his forehead that's so stubborn and prominent that he even includes it when he's drawing pictures of himself.

And in keeping with tradition, here is an interview with 6-year-old Caleb!  He was in a somber mood, which made it easier to record him, but it doesn't accurately show his crazy personality.  Still, he's got some good stuff to say!  It's a bit long, so if you don't want to watch it all, the best parts are the beginning and at about 6 minutes.

Sometimes it feels like just yesterday that my life turned upside down when you came 13 weeks early at 2 lbs 7 oz, and sometimes it feels like another lifetime.  You are the most positive, energetic, forgiving, clever, silly person I know.  You test my patience every day, and I'm sure I'll thank you for it some day.  You've always been my inspiration and my example and I cherish you and the chance I get to be your mom.  We love you, Crazy Cal!