More Crazy Things They Say

I offered to do something for Russell, and he said "ok."  Then he changed his mind and ran away from me saying "NO-K!"

We were about to go in a store and I nicely told the boys, "My patience is running out, so please, behave yourselves."  Caleb said, "I'll try to get your patience back for you."  It made me laugh, and then he said with a big smile, "See, did that give you a little patience back?"  It sure did!

Russell:  Mom, I think a red wall in the basement would look good.  (We were watching Fixer Upper.)

Russell:  Mom, I wish I didn't have a nose so I couldn't smell stinky stuff.

Caleb, holding a half-grown little chicken:  It's ok, it's ok, Papa has you, Papa has you.

Russell, snuggling a dog that we were dog-sitting for the morning:  It's ok, Mommy's here.  [Referring to himself as Mommy, of course.]

I was telling Russell how lucky he is, because Caleb is only a big brother, and Zach is only  a little brother, but Russell is a big brother AND a little brother.  He said, "No, I'm a medium brother!"

Russell:  Mom, if the world were upside down, we'd be walking on the ceiling.

Russell, crawling on the floor following me:  Mom, I'm going to be like Dolly, because Dolly follows you.  [It's true.  Dolly can always be found at my feet.]

Caleb asked if plants go to the bathroom.  I taught him about photosynthesis.

We were talking about what it would be like to live in Narnia, where animals can talk, and I told Caleb that I always wondered what Hank would have to say.  Caleb said, "Dolly might have a very beautiful voice."

Caleb:  Mom, blink your eyes.  [I blink and he runs around the corner.]  I'm gone!  So fast you couldn't even see!

Caleb:  Mom, if there ever were a WWIII, I would definitely fight in it.

Caleb:  Mom, there's this store called Ross and if you go there you can buy shoes that make you run REALLY fast.  That's what Blake told me.  It's a secret.

Neighbor boy:  Yeah, my dad is really smart.  Caleb:  Smarter than my dad!

Caleb:  Mom, can we make a robot for Granddad that will do everything for him?  Like clean, and make dinner?

Russell, talking about Spot It, a game where you try to collect cards:  One time I played by myself and got TWENTY CARDS!

Caleb:  Mom, it's just a miracle that life is real!

Caleb, upon finding a penny on the parking lot ground:  I guess it's my lucky day!

Caleb:  If Auntie Jenna never has kids, we should give her someone.
Me:  Who would we give her?
Caleb, thinking:...Maybe I'll give her me!!

Russell:  What if this was a rule, if everyone found a bug, they would be their pets!  What do you think about that?

Russell:  You know what happened?  I found so many bugs today!  I think today is Bug Day.

Caleb:  Mom, we're lucky that we don't have to be eaten, because lots of other animals have to.

Russell:  Mom, I just feel like I need to draw beautiful things.  [Then he drew a necklace.]

Caleb was telling me that our neighbors feed their chickens watermelons, and I said our new ducks might like watermelon, too.  Caleb said:  Oh!  We should trial foods with them!

Russell:  Mom, if you lick your elbow, it tastes like chocolate!  That's what Joey says.  [Joey is a preschool friend.]

Russell:  My pocket smells like centipedes!  [Guess why....]

Kid Quotes Again!

Caleb, asking for my help catching Zach before he got to the stairs: "MOM!  We need you!  You save all the days!"

Caleb, while trying unsuccessfully to open the child-proof cap on the gummy vitamins:  "How does it know I'm a CHILD?"

Caleb's favorite movie is Milo and Otis.  It used to be on netflix, but they discontinued it some time ago.  We checked it out from the library, and Caleb was sad when we had to return it.  He asked Nate, "Can you invent it to come back onto Netflix?  At work?  On Monday?"  (Sorry, Cal, I know Daddy can do lots of cool things on the computer, but Daddy doesn't work for Netflix!)

Russell, out of thin air, "Mom, if you see a poptart on the road, you should crash into it."

Caleb:  What would be crazy is if I had the stickiest feet in the world, as sticky as the stickiest gummy bears, and the stickiest ice cream, and I could climb on the ceiling.

Caleb:  Mom, does it take longer for you to grow up if you were a preemie?  [Yes, Caleb, it does!  What a clever little thinker!]

Caleb:  Dogs only have first names.
Me:  Dolly's last name is Purser, because she's in our family.
Caleb:  But what about a middle name?
Me:  We can give her one!  How about Face?  Dolly Face Purser.
Caleb:  Haha!  But she needs to be named after someone.
Me:  We could name her after you!
Caleb:  Dolly Caleb Purser.  But that won't work because it says 'Caleb Purser,' and that's ME!
Me:  Dolly Cal Purser.
Caleb:  YEAH!

Russell:  I think the moon is happy because the moon is smiling!

Russell, in a condescending tone:  Mom, Skye [a girl in his preschool] says "roof" when she's being a cat.

Caleb:  My mouth is getting sore from talking!

Caleb:  I have an anger and sadness core memory.  Russell and I were fighting over hotwheels in the front room.  But when I get baptized, that won't be a core memory anymore, because when I come out of the water I will only have happiness memories!

Russell:  Mom, sea turtles lay their eggs on the beach so when the baby sea turtles hatch they don't even know which sea turtle is their mom.  Isn't that sad??

We were talking about what it would be like to live in Narnia, where animals can talk, and I told Caleb that I always wondered what Hank would have to say, and Caleb said, "Dolly might have a very beautiful voice!"

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!

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!]

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!

6th Annual Pumpkin Patch

2010, 2011, & 2012
2013
2014
2015:

This year we had six adorable little boys in the pumpkin patch.  Two 5-year-olds, two 3-year-olds, a 7-month-old, and a 5-month-old.  Perfect best friends!

 The mandatory picture with this jacket on.

 Betcha can't tell which ones are brothers!  ;)

 My boys and me.  :)

 The weather was unseasonably warm this year.

School 2015

My boys are growing up!  *tear*

 Now that my big boys are in school (Caleb in half-days kindergarten and Russell in preschool 2x/week) this little guy and I get four hours a week with just the two of us!

[Also, you'll notice that our front door has undergone a transformation between Caleb's first day and Russell's first day.  You're looking at Minwax gel stain in Hickory.  It went on evenly, even though I didn't remove the old, patchy finish from the door.  It certainly brings out the lovely details and makes the entrance to our home feel much more clean and welcoming!]

Scope #8

Caleb had his 8th scope this week.  He was eating a diet of everything but dairy, wheat, and soy, but his egg consumption was limited (and mostly in the form of baked eggs).  He was also getting a tiny piece of sacrament bread for the past few weeks at Church.  Technically this trial was for peanuts, tree nuts, fish, and shellfish.  We didn't eat a lot of fish/shellfish during the trial, but he did have a piece of Udi's toast with chocolate peanut butter for breakfast most mornings.

And he...

PASSED!

WOOHOO!

The only "diagnosis" on the pathology report was "FOCAL MILD MUCOSAL EPITHELIAL REACTIVE CHANGE" in his small bowel.  I'm not sure what that means, but there were no eosinophils, so that's great!

Since biopsies have shown that he reacts to dairy, and we had to stop his wheat trial before we could scope because he was symptomatic, that leaves SOY to trial.  He was put on soy formula when he was young, and we stopped after less than a week because he seemed to be reacting to it, so I'm not particularly optimistic that he'll pass his soy trial, but it's worth a shot!  Bring on the soy sauce, edamame, and tofu!

Brothers at 2 months

Caleb at 5 months (2 months adjusted for prematurity):

Russell at 2 months:




Zachary at 2 months:




You tell me: Which brother do you think Zach looks most like?


PS: What sweet, adorable little boys I've been blessed with!

No Doubt, It's Necessary

At times I've questioned whether we did all we could do before resorting to the feeding tube for Caleb...would we make the same choice if we knew then what we know now?  Then I see Caleb come down with a simple little stomach virus (or a cold, or any other virus) and his GI system completely shuts down to where he can hardly digest anything without throwing up.  He NEEDS that feeding pump to deliver a continuous slow drip of formula (or pedialyte) to keep him from needing an IV for hydration and blood sugar.  I can't count how many hospitalizations we've avoided because of his tube!  And that's to say nothing about being able to give him the calories he needs (and can't get on his own) to grow and thrive on a daily basis.  It's true, I'm pretty glad to have that little life-saving piece of silicone in his abdomen!

Enthusiastic!

*after being tucked in bed for the night, Caleb shouted down, "MOM, DAD, MOM, DAD, MOM, DAD" until Nate went to see what he needed*

Caleb: Dad, what does "enthusiastic" mean?

Nate: It means you get excited about everything.

Caleb.  OH!  I'M enthusiastic!

Caleb, you are the most enthusiastic person I have ever met, and I love you all the more because of it!  Never stop being you.

Feeding Tube Awareness Week

Parents of tube-fed kids usually have a love/hate relationship with their child's tube.  More love than hate from me, though.  We all wish our kids didn't need it (uh...how nice would it be to have a kid who can stay healthy without daily medical intervention???) but we're so glad the tube is an option!  It keeps them alive!

So for Feeding Tube Awareness Week this year, I'd like to share some of the things we love about that little piece of silicone that happens to save our kids on a daily basis!

*****

I can give him medicine without hearing him whine.  I can also give him medicine while he's asleep!  You know how when your kid has a high fever and you have to alternate tylenol and motrin every four hours?  Never mind what time he goes to bed, I can continue to give him medicine to keep his fever down without interrupting his slumber!

*****

I can keep him hydrated while sick.  You know when your kid can't keep anything down, and it's all you can do to make sure they eat popsicles, or a tiny bit of electrolyte drink every hour?  Well, I can just put Caleb on his feeding pump and set it to deliver gatorade or pedialyte at 20ml/hour, or whatever speed he's able to handle without throwing it up.  It's pretty darn handy.  In fact, at this very moment he's set to get 300ml at a rate of 80ml/hour because he has a cold and whenever he coughs with too much food in his tummy, he throws up.  He used to need IV fluids whenever he got sick, but in the almost 4 years that he's had his tube he has only needed an IV for sickness once!  And that was because his blood sugar was doing some wonky things after a day of puking, even though he was able to keep down 20ml/hour of gatorade for an entire night before going to the ER.

*****

I love that we can make sure he gets exactly the nutrients that he needs.  I've heard so many people lament that their kid will only eat hot dogs, pb&j, or quesadillas.  No veggies?  No problem.  I can rest easy knowing that he "eats" more healthy than pretty much any other kid his age.  Even though he is a veggie fan.  ;)

*****

Got a gassy baby?  No problem.  Just hook him up and burp him!  It's called "venting" and it's an easy way to get the air out of the tummy.

*****

You know how feeding a kid is a big production with all the mess involved?  You've got to do all sorts of dishes, wipe down the table, sweep the floor, wipe the kid's face, and sometimes even change the kid's clothes?  Not with a tube!  Unless the syringe disconnects unexpectedly and you spill formula all over (it happens), or the tubing disconnects while they're sleeping and instead of feeding the kid you feed the bed (it happens, and it's why Caleb's bed will always have a mattress protector)...but other than those instances, it's pretty mess-free!  All you have to clean afterwards is a tube and a syringe.  Not bad at all!

*****

When your kid is about to toss their cookies and they just look so uncomfortable...if you can work fast, instead of sending him to the bathroom to hurl, just hook up the tube and syringe and vent him.  You'll get his stomach contents out through his tube instead of letting them come up and out of his mouth.  It's so much more comfortable.  Just imagine needing to throw up, and not having to feel the discomfort of actually throwing up.  Amazing.

*****

Road trips are so much easier when you can tube feed your kid.  Imagine there's a long stretch where there aren't any fast food places (not that there are any fast food places where we can feed Caleb, anyway because of his food restrictions.  Only Chick-fil-a, which needs to expand across the country!).  Just hook him up on schedule and feed him.  Easy peasy.

*****

Well, right there is a pretty good list of reasons why it's awesome to have a kid with a feeding tube.  There are a million reasons why kids need feeding tubes--some aspirate food and drink into their lungs, causing recurrent pneumonia; some have severe oral aversions; some have low muscle tone; some have problems digesting; some have anatomical problems, like esophageal stricture or short gut syndrome; some are too weak to eat enough (like babies with congenital heart disease, or other organ failure); some need to go on a special formula and refuse to drink it by mouth because it's pretty yucky tasting (like Caleb); etc--and there's not a single parent alive who doesn't wish their kid didn't need a tube.  It's commonly believed that a kid won't starve himself.  To that I say, a healthy kid won't starve himself.  And we all want healthy kids.  For us, using a tube to feed Caleb is the best way to keep him healthy, despite his disease and special diet.  So instead of hating our circumstance, I choose to see the silver linings.  It's pretty awesome that we can use a tube to keep Caleb alive and thriving.  And it's pretty awesome that we can use it to help him burp, too.  ;)

Happy Feeding Tube Awareness Week!

This is Caleb with an OG (orogastric) feeding tube at a few days old.

This is Caleb with an NG (nasogastric) feeding tube at almost five months old.

This is Caleb during his year of being tube-free.  He was about 15 months at the time.

This is Caleb with an NG tube for the second separate time in his life, around 18 months old.

Caleb with his g-tube (gastrostomy) at about 22 months old.

Caleb today, at 5 years 3 months, getting fed lunch with his g-tube.

World Prematurity Day: Remember When

I love how the whole month of November seems like it's dedicated to Caleb.  :)

There are a lot of facets of prematurity awareness, but this year I'd like to focus on something positive.  The March of Dimes has a "Hugs Heal" campaign promoting skin-to-skin holding (kangaroo care) for premature babies.  It has been proven to help babies in a lot of ways.  In underdeveloped countries, where proper medical equipment is hard to come by, Kangaroo Care can literally save lives!


Kangaroo Care is "holding your diapered baby on your bare chest...with a blanket over your baby's back to keep him warm"  (Learn more about Kangaroo Care here.)

This is a picture of the first time I held Caleb.  He was 12 days old and had just come off of the ventilator for the last time the day before.  He was still well under 3 pounds at this point (he reached exactly 3 pounds when he was exactly 3 weeks old).

I was so excited when I got the call that Tuesday morning from our favorite nurse, Catherine.  I had previously been told that I couldn't hold him until he had been off of the ventilator and stable for at least 24 hours.  The day before this, he was supposed to have heart surgery.  His lungs had been filling with fluid and collapsing, but he took such a great turn that by that evening he was able to breathe on his own.  Catherine told me, "I know you thought today was going to be a 'recovering from surgery' day, but how would you like to come hold your baby?"  She was always such a great advocate for him!  She told me many times, "I'll always do what's best for your baby.  I'll fight for him and they can fire me if they want!  I only work this job because I love it.  It's worth it to get fired if it means I'm doing what's best for your baby."  And there were many times that I did see her fight for him!  I expect this was one of those times.  I can imagine her that morning, telling the NP and neonatologist, "Look, he's doing great.  He's never been better.  He's 12 days old and his mom has never held him.  Who cares that it hasn't been 24 whole hours since he was extubated?  It's time for Mom to hold him."  This post could quickly turn into "The Many Reasons Why I Love Catherine," but back to Kangaroo Care....

I picked Nate up from work on my way to the hospital.  He wasn't going to miss this!  It took two nurses and one Respiratory Therapist to move Caleb from his isolette to my chest.  Three people for one tiny baby!  They told me that I would probably only hold him for 30 minutes, because by then most babies need to return to the stability of their isolettes.  But Caleb snuggled in and fell asleep almost instantly (well, after trying to pick up his head and turn it around with that big CPAP elephant nose stuck to his face!--he was amazingly strong; and after rooting around to try to find a source of that yummy smell of milk that was so close--AMAZING to see for a baby who hadn't even attempted to eat yet).  His heart rate and oxygen saturation leveled out wonderfully.  Babies this small will often swing between high heart rates and low heart rates, causing the monitors to alarm every minute or so.  They call them "swingers."  But while I was holding Caleb, his swinging was much less than it was before.  He was so stable on my chest that they let him stay there for TWO HOURS!

The best word to describe how it felt to hold him is right.  It just felt so right to have him so close.  Yes, it would have been more right to have him inside of me for another few months, but this was the next best thing.  Mommys and babies aren't supposed to be separated so early and when they are, there is nothing better than being put back together again.  It was truly one of the most incredible moments of my life.

When it was time to put him back (and change his diaper, and start his next feeding, and for me to pump because I was getting pretty uncomfortable) they took his temperature (as they always did every three hours) and it was perfect.  There was no denying that holding him skin-to-skin was good for his health.

Nate's first time holding Caleb.

As the days went on, we were allowed to hold him once a day for those first few weeks.  Nate and I took turns holding him skin-to-skin.  There was one day where I was holding him and he let out a little cry--very unlike him.  Caleb almost never cried.  Then he spit up a little.  I remember thinking, "Oh, he's just like other babies now!  They all spit up, right?"  But Catherine knew something was wrong.  She told the NP that he NEVER cried when Mom is holding him, and that alone was a big red flag.  So they did an abdominal x-ray and found that he was dangerously close to perforating a bowel.  His bowels were so full of air that they were pushed up to the level of his nipples.  It was caused by a combination of starting giving him Human Milk Fortifier to increase the calories and fat content in my breast milk in an attempt to chunk him up (studies have shown that the faster a baby can gain weight, the faster they get out of the NICU) and swallowing air from his CPAP machine.  They immediately stopped feeds, put him on a tube (the Andersen Tube) that essentially pumps everything out of his stomach, measured his girth every three hours, and waited for him to get better.  This was the closest Caleb ever got to dying while in the NICU.  If he had perforated a bowel, it would have required emergency surgery and would have likely caused infection.  Infection is the number one killer of babies in the NICU.  It was a scary few days there, and we weren't allowed to hold him until he was more stable.  About a week later, the NPs wanted to put him back on the Human Milk fortifier.  Again, Catherine pulled out the, "You'll have to fire me before putting him back on that so soon after what he's just been through."  I was there to see this one.  Catherine is one of the most likable people ever, but when she pulls out the big guns you back down!  So they agreed to try a much more gentle fortifier, which we could all be happy with.  My Mommy instinct (which has proven to be extremely trustworthy) tells me that the reason Caleb has such awful GI motility and can't digest food fast enough to consume enough to survive is because of the trauma caused to his GI system from that fortifier.

As you can see, holding my premature baby was an amazing experience for us both.  One that quite literally could have saved his life.  And the emotional experience was unmatched.  It's a moment that will always bring tears to my eyes when recalled.  Hugs truly can heal.  And now I get to hug that big, miraculous 5-year-old all I want!

Happy Halloween!

We happened to be at Costco when their Halloween costumes had just hit the racks.  When Caleb fell for the fireman costume, I asked Russ if he wanted to be a dalmation, like Duke (our next door neighbor's dog).  He jumped on the idea.  I love that my kids are still young enough to be persuaded to wear coordinating costumes.  I think it's adorable.  But I couldn't find a decent dalmation costume to buy, so I had to sew one.

Good thing I was on a roll and made it two months early!  When that morning sickness stuff hit there was no such thing as productivity.

I used some well-fitting pajamas as a template and whipped it up in no time!  It's far from perfect (only the second zipper I've ever sewn), but it did the trick with no complaints.  :)

I must say, these two were a pretty adorable duo!

Caleb is 5!

Happy birthday to my great big boy!

This is what Caleb is like at 5 years old:

• He weighs 33lbs 10oz.  He recently had a big ol' growth spurt, gaining 3 pounds in less than 3 months!  For Caleb, that's incredible!  This is literally his first growth spurt in his entire life (if you don't include the weight he gained immediately after getting his feeding tube).  We even had to pack up all of his 2T clothes.  He's wearing exclusively 3T now!  And his clothes fit him pretty well, too!  It helps that Walmart now carries toddler pants with an adjustable waist for under $10.  We stocked up.  :)
• He is starting to stay dry at night, as long as he wakes up to use the potty.  This is pretty impressive to me, since he currently gets 800ml of formula while he sleeps (that's over 26 ounces!).  He has to unpin his tube extension from his waistband to go potty (we pin it to him at night so it doesn't pull his feeding tube out).  For a while there he was waking us up to help him to the potty, but a few times now he has unpinned his tube himself!  I'm pretty proud of those fine motor skills.  ;)
• He can zip his own jacket.  I remember most of my kindergarten class couldn't even do that!
• He very recently discovered the joy of art.  Just a few months ago he didn't even know how to color inside of the lines and the only thing he could draw was a car.  Seriously.  But now he colors in the lines and comes up with original pieces of art--rainbows (his favorite), monsters, houses with chimneys, people, butterflies, etc.  
• Some art of Caleb's:  a butterfly; Meggie (he drew that picture on the day she was put down); him in front of a house with a door, doorknob, and chimney, as well as green grass that he cut with scissors to be the texture of grass; and two boys who bear a striking resemblance to Caleb and Russell, yet Caleb told me they weren't them, they were bunnies and then he drew tails on them...hmmm....
  
   A super cute monster that he drew on cardboard (we get a lot of boxes around here, and it's always his favorite thing to color on).
  
  
• I made Caleb a rainbow cake, since he's so fond of drawing rainbows.  He always asks me to remind him what order the colors go in.

• He knows and can write the entire alphabet and is starting to sound out words.  I'd guess he could be reading by now if I took the time to teach him, but pretty much all I have the energy for these days is growing his baby sibling.
• He gets worked up easily when he's frustrated with his inability to do something.  We both have to take a lot of deep breaths.
• One of his favorite things to do is make Russell laugh.  It doesn't take much for Caleb to get Russ to laugh, either.  They're truly best friends.  They play so well together.  Of course they have their moments (I swear, they're more likely to fight over something when I'm on the phone), but for the most part they have the best balance I could ever expect from two brothers.
• His other best friend is Nash, as it has been since they were wee babes.
• His best preschool friend is a girl named Maci.  She likes zebras and Frozen and they like to play "kitchen" together.
• He doesn't have a favorite color, but tends to like red.
• He's kind of a follower.  When other people like something, he's more likely to like it as well.  He's not always an original thinker, but he does have great self confidence, which sort of evens it out.
• His favorite toys are games--board games and card games and puzzles and such.  Unfortunately he needs supervision to play lots of them, and he can't play them all day long or the pieces will all get lost.  But yesterday when we asked him what he wanted to do for his birthday, the first thing that popped into his mind was "PLAY GAMES!"
• He picks his clothes and dresses himself every morning.  Sometimes I have to send him back to change--like when he wants to wear shorts when it's 40 degrees out (he's a big fan of shorts, just like his daddy).
• He is super distract-able.  It takes about three reminders to get him to put his shoes on.  Same thing for putting on his seat belt (which he's been doing by himself for a while now, and he's still in a 5-point harness) and his pajamas.
• He loves being helpful--he will set the table without us asking (this is a new thing for him, and we're loving it).  He also loves doing chores, especially cleaning the toilet (no one tell him it's gross, please!).
• He hates brushing his teeth.  Sometimes there are tears.  I attribute it to his oral aversion and his highly sensitive gag reflex.  If he's even the littlest bit sick, brushing his teeth makes him throw up.  But he's been to the dentist three times and always gets great reviews on his teeth, so that's great!  (Even though he only brushes at night....)
• He is a very thoughtful person.  He loves to donate his money to people who have less than him, he always remembers people who are struggling in his prayers, and he just plain likes to please people.
• He's a super snuggler.
• The best word I can think to describe him is enthusiastic.  Everything is exciting to him.  Seriously.  It can be exhausting, but it's an amazing quality.  He sees so much good in the world!

Caleb, we couldn't imagine our family without you.  Life without you would be so boring!  You are a great big brother, a wonderful helper, and a fantastic snuggler.  I love your zest for life, and how you love everyone.  You are a great example to me and I couldn't be more proud to be your mom!

And now, an interview with the man of the hour himself:

Caleb

Tonight I sat by the bed of my sleeping angel and put my finger in his hand, just like I did when he was a baby.  Only then, I wasn't at liberty to pick him up and hold him because he was too fragile, too unstable, or needed to preserve his energy to grow and learn how to eat.  Today I watched him go down a big slide on a potato sack all by himself.  Once he made it to the bottom, he immediately hopped up and came to me with a quivering lower lip and said, "I didn't like that at all.  I don't want to do that again."  And I held him in my arms, just as I wished I could all day long during those first three months.

As I sat by his bed, I watched him breathe.  It came so easily tonight, unlike his first few weeks.  I remember watching him struggle for breath at a few days old, just wishing the doctors would put him back on the ventilator so he could rest.  I was moved to tears, seeing my tiny baby struggle so much to do life's most basic function.  I wished life could be easy for him.

Tonight, as I sat by his side, I listened to the feeding pump churning away...just as I did almost five years ago.  He's still working on life's second most basic function (eating).  And that's ok.  Medical intervention kept him alive then, and it does so now.  I could never hate it.

As I looked at how much smaller my finger looks in his big preschooler hand, I noticed that it's slightly callused, unlike when he was born with skin as thin as paper.  I remembered my very first interaction with him--I stroked his leg, because I didn't know any other way to let him know I was there.  The nurse told me that it was overwhelming and even painful for tiny preemies to be stroked like that, and to provide firm pressure instead of movement.  Who knew I was touching my newborn baby wrong the very first moment I met him?  In the days that followed, he developed two scars from the monitor leads.  They were attached to machines and run by electricity, and even the imperceptible amount of heat they generated burned his delicate skin.  He still wears the scars today.

Tonight, I soaked him all in.  And I thanked God for the priceless memories of those first three months, and for every day since.

Stuff

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Caleb prefers to eat the crust off of bread, the skin off of potatoes, and the burnt pieces off of meat and grilled veggies.

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When Russ goes #2, he kindly tells me, "Mom, can you leave?"  He likes privacy in the bathroom.

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Ever since Meggie died, every time I make a noise (chuckle, sniff, sigh, etc.), Caleb asks me if I'm crying.  He's turning into a sensitive, sweet boy.  I also mentioned once how he left his feeding backpack on the floor by the bed, and every time I walked past it I had to take a second look because I thought it was Meggie sleeping there (that was where she would sleep at night).  So he said, "Maybe from now on I should leave it in my room so it doesn't make you sad."  His sweet hugs got me through some rough days.  What would I do without that kid?

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Many times now, Russ has said, "Mom, I LOVE YOU!  So can I have a skittle??"  Keep up with developing the art of flattery, Kid.  It will serve you well!

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Every single night, Russell lays his head on my shoulder (or Nate's, depending on who's putting him to bed) and requests his two favorite songs:  Twinkle Twinkle Little Star and I Am a Child of God.  

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We got some new colorful plates, cups, and utensils from Ikea.  The boys like claiming which color they want at each meal (they can only pick out of the ones I take off of the top of the stack).  Caleb has quickly learned that Russell's favorite is orange, so now of course that's Caleb's favorite, too.  When Caleb and Russ claim the same plate, Russ almost always ends up changing his mind so as to avoid a fight.  How is my 2-year-old so mature??

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Caleb's favorite movie is Milo and Otis (which he pronounces Milis and Otis).  He would watch it 20x a day if he could.

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In Russell's prayers, he always has to thank God for animals.  It usually goes something like this: "Dear Heavny Father, thank dee for Mommy, Daddy, Caleb, animals, Auntie Jessica, Mommy, Caleb, Daddy, giraffes, elephants, Jesus, Amen."  [Auntie Jessica is my sister-in-law and her dad passed away unexpectedly almost two months ago and my boys still remember her in every single prayer.]

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Russell is in the habit of putting his shoes in the coat closet as soon as he walks in the door.  That way, he's able to find them easily when he needs them later.  Caleb is the opposite.  He will often kick a shoe off as he's walking to another room, only to kick the second shoe off in the next room.  It takes us forever to find his shoes when we need to go somewhere!  How are two brothers so completely opposite?!

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When Caleb is in preschool, once a week Russell and I like to go on a lunch date together, which is something we are rarely able to do with Caleb because of all of his food restrictions.  He is so good in restaurants!  He always says thank you to the server, and asks for whatever he needs ("Can I have some water, please?")  And he's a pro at flirting with waitresses, even telling me as she's walking away and still in earshot, "She's so cute!"

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Caleb loves to match Russell.  Caleb usually gets dressed before Russ, but if I dress Russ in something that Caleb has a same-colored shirt or a matching shirt for, Caleb will go back to his room and change so he can match his brother.  He even does it to match me sometimes.

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Russell pronounces most things very clearly and properly, but he calls balloons "bum-a-woons."  It's adorable.

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When Nate told Caleb that Taysom Hill (BYU's quarterback) broke his leg, Caleb said, "Aww, nuts.  That's not good.  At least we still have Jimmer."

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Russell will often ask a person's name (the checker at the store, the doctor, etc).  When they say their name, "My name is Dave,"  Russ replies in his goofy voice, "That's a funny name!"

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I was getting out of the shower and Caleb was talking to me from the other side of the door.  He said, "Are you going to wear the towel on your head?  Because I think you're cute with the towel on your head."  Then when I got dressed and came out with the towel on my head, I asked him if I was cute.  He said, "You have to smile...[I smiled]...THERE!  Just like that!  You look cute with a towel on your head and a smile!"

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Auntie JB was visiting and Russ said, "I have to tell Auntie something."  I said, "You know she's in the shower, right?"  Meaning, uh, you'll have to wait until she gets out of the shower.  He said, "Yeah." and went upstairs.  I later find out that he walked right in on Auntie JB in the shower, pulled back the shower curtain, and said, "Auntie Jenna, I love you."  It was that important that it couldn't wait.

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Minnesota From Caleb's Perspective

We got a new camera in December, so for our trip to Minnesota we let Caleb use the old camera at his discretion.  It was a great way to keep him occupied on a long road trip, and it was fun to see what he found picture-worthy.  Here is a large selection of pictures of the world from Caleb's perspective: