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!

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!

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!

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.

Caleb is 4!

Can you believe it's been four years since my little man came into the world?  That day was one of the scariest, best days of my life.

Every year on this day I think about what we've been through.  His first year was a roller coaster, no doubt, and ages 2-3 were pretty awful with lots of vomiting and more questions than answers.  I'm glad to say that we finally have a few things figured out and things are looking up!  Let's hope it only gets better from here on out!

Some things about Caleb at 4 years old:

• He weighs 28lbs 4oz.  He has gained four pounds in the past year, which isn't much, but all of that has been gained since his DGE (delayed gastric emptying) diagnosis in January.  After being treated with augmentin (1 teaspoon 2x daily) to speed up his digestion, he immediately gained over two pounds.  That was a big deal after having no weight gain in about 8 months.  A few months ago he started plateauing again, so we started giving him 1.5 teaspoons of melted coconut oil through his tube 2-3x a day, and that helped him pack on the next few pounds.  I'm afraid that he's starting to plateau again now that it's sick season, but we plan to stay as quarantined as possible so we don't lose too much ground.
• He wears 2T and 3T clothes.  His 2T clothes are getting short on him these days.  Yay!
• He wears size 8 and 9 shoes.
• He still doesn't eat much by mouth (maybe 100 calories...today it was two baby bites of a hot dog, about 8 green beans, one pea, a minuscule nibble of a piece of pineapple, a little graham cracker square with a melted chocolate chip on it, and a starburst...some days are better, some are worse).  He gets about 17 ounces of medical formula mixed with rice milk through his feeding tube pumped at about 50ml/hour while he sleeps at night, as well as 6 ounces in the mid afternoon and 6 ounces before bed (both fed via gravity feed), and hopefully a few ounces at breakfast or lunch (it's hit and miss), plus a few teaspoons of coconut oil.  He also gets four ounces of water first thing every morning, and gets his tube "flushed" with about half an ounce of water after every feeding.  It sounds like a lot, but it's really not.  That's a minimum of 29 ounces of rice milk and formula combined, plus about 5 ounces of water, and 100 calories of real food.  I wish we could give him more, but it's so hard to increase his volume without making him throw up!
• His favorite thing to do is play outside in the sand by himself, with the dog, or with his brother.  

• If you ask him, he'll say his best friend is Russell.

His next best friend is Nash, but judging by these pictures he's actually a bigger fan of Nash.  ;)

• He is finally forward-facing in his car seat.  When we got our mini van in June/July, we asked him if he wanted to face forward or backward, and he chose backward.  So backward he stayed!  Until he noticed that a few of his friends were facing forward.  When he mentioned it to me, I asked him if he wanted to face forward, too, and he said yes.  Since the switch, it's so much easier getting him in and out of his car seat!  I can even buckle and unbuckle him from the driver's seat.  It's pretty awesome.  Although, we have yet to reveal to him the pleasures of having a DVD player in the mini van.  I'm hoping to keep that one a secret for now.  ;)

• He sleeps in his own big-boy bed!  He stayed in his crib well past his 3.5-year mark without ever climbing out of it.  It was working really well for him, until a few months ago when he started waking up in the night asking to use the potty.  We wanted to capitalize on the opportunity to have him nighttime potty trained since he gets a lot of fluids through his feeding pump while he slumbers, so we decided it was time to put him in a toddler bed to make the potty easier to access.  We put a little hook on the wall by his bed to hang his backpack with his feeding pump so he could just grab it and go to the potty.  For a while he was asking help to go potty many nights out of the week, but it's been a while now since he's gone.  Oh, well.  Some day.

• Nap times are a thing of the past.  Whoever said that "a child will sleep when they're tired" has clearly never known a child like Caleb.  He doesn't get drowsy when he's tired, he gets more wild than usual, and he's usually pretty wild.  You don't want to see him when he's tired!

• He does a great job of staying in his bed at night time.  I'm sure it's mainly because he is tethered to his feeding pump, but he has never once gotten out of bed to join us in our room in the night.  Sometimes he will come down the stairs shortly after being tucked in, but not often.  And in the morning, he almost always stays in bed until I come to get him up.  It's ideal.

Except for a few times, when he has left his bed after being tucked in and waits for us on the stairs, where he eventually falls asleep, pump backpack and all!

• He is allowed to eat anything but the top 8 allergens, is known to have eosniophilic reactions to dairy, soy, and wheat (debatable, but for now we're considering wheat a "fail") and still has to trial the other top allergens, and goes wild if he consumes red food dye (so it's also not allowed).  We just started an egg trial.  It sounds so complicated, but it is so much easier than where we've been!  We can actually share family dinners!
• He can hold a conversation with anybody and everybody, is super easy to understand, and uses correct grammar (other than "I don't want no -fill in the blank-"), but still likes to regress back to Russell's style of talking (ugh), probably because Russ gets attention for talking in his little learning way.  It happens a million times a day.  Not my favorite thing.
• He isn't one bit shy.  Not one bit.  While trick-or-treating, he said to one person, "So, how is your day going?"  He also likes to tell strangers, "My name is Caleb.  My dad is Nate and my mom is Anna.  My brother is Russell, and the girl in our house is Auntie Jenna."  We talk often about how he shouldn't talk to strangers, and what to do if one tries to take him.  He's great at reciting "I bite and kick and scream," but I don't think he could identify a stranger if his life depended on it.  That's why I keep my eye on him every second when we leave the house!
• He gets himself dressed on his own, so he sometimes ends up with some pretty creative outfits.
• He tries my patience on an hourly basis.  
• He has some pretty intense sensory needs--can't stop touching things, talking, moving, or putting things in his mouth (other than food).
• He is a pretty sweet big brother.  I'm fairly certain that he doesn't see Russ as inferior to him because he's two years younger.  They talk and play so well together (a lot of the time--not always).  
• He is suddenly very scared of things.  If there's an intense scene of a movie, he runs to the playroom doorway and pokes his head around the corner to watch.  He has seen a few movies in theaters and always does awesome while there, but when he had the chance to see Despicable Me 2 for a second time, he absolutely would not go because he was scared of the purple monsters.  
• He has an amazing memory.  He not only talks about the Christmas tree that he had in his room last December, but he talks about how we sing one song and open one present every night in December, and how the presents are wrapped in paper that he finger painted.  Sometimes I don't even know what he's talking about because I don't remember as much as he does!

And now, here is an interview with Caleb on the day after he turned 4:

And a few "then and now" pictures (no smiles...I'm just happy to have a few that weren't completely blurry):

Isn't he amazing?  He sure has come a long way and beaten a lot of odds!  We love our little miracle!

In case you were wondering...

Here are some unexpected details regarding delivering a premature baby:

First off, you don't get to make a lot of decisions.  No one ever asked me if I wanted an epidural.  They just gave me one.  They don't ask if you want your water broken, or how you feel about pitocin.  If it's necessary, it happens.  They certainly weren't about to ask me how I felt about a c-section.  They were ready to do it, in case it was necessary to save my baby's life.

As soon as he was born, they took him away to put him on life support.  They said it was my husband's job to go with him, and leave me in the OR with just a doctor and a nurse or two.  That I'd see him when things settled down a bit.  I didn't question it.  I didn't even think about how it would feel to not see my baby, or to be left alone.  In that situation, feelings don't matter.  It's all survival mode.  Literal survival mode.  Please save my baby, and do it fast.

After I got to spend a few minutes with my new tiny baby (while he was getting his very first IV put in...aww!  I got to experience a "first" already!), the first thing I had to do was sign a paper saying that if I didn't pump enough milk for him then they could use human milk bank milk.  That was the very first matter of business.  That is how important breast milk was to his tiny, underdeveloped, immature digestive system.  I gladly signed it, even though I didn't know before that moment that there was such a thing as a human milk bank.

Then, a few hours later, a lactation consultant came to my room with a pump and asked if I wanted to pump and eventually try to breastfeed my baby.  Uh...of course...you mean I can breastfeed him?  But holy cow (no pun intended), I was not mentally prepared for that.  You mean...just how does this work?  Oh, so you're going to help me?  Great...let's just throw privacy and propriety out the window then.  But eventually I got to the point where half the medical professionals in Utah County had seen me try to breastfeed my baby and I hardly felt the need for a shirt when I was in the NICU.  Ok, that's a slight exaggeration, but still.  It was just a fact of NICU life.

Then, later that same day, there were two different people who came to my hospital room to request our participation in medical studies.  Who knew, right?  The very day I delivered a baby at 27 weeks.  He didn't even have a name yet!  One requested a whole vial of my saliva, and a swab of the inside of Caleb's cheek, to try to determine a genetic link behind prematurity.  The other wanted to pull a card out of an envelope to determine if Caleb would go on a "high flow nasal canula" or a "continuous positive airway pressure (CPAP)" machine when he was ready to be taken off of the ventilator, to determine if one showed better results overall.  He was chosen for the high flow nasal canula, in case you were wondering, but he eventually ended up using both at separate times.  I never heard of the results of either of those studies.  Nor the study that they did a month or so later, trialing a machine that monitors oxygen flow to the brain.  But of course I wasn't going to turn down the chance to participate in these studies.  Anything to help out babies to come.

And those were the unique experiences surrounding the delivery of a premature baby.  Those are all things that seemed so small, but absolutely did not happen when I delivered a healthy baby.

If you're interested in seeing the whole story behind Caleb's crazy entrance into the world, here it is.

It's always so weird to me that in our photo files, this picture:

 Is followed by this picture:

We were soooo unprepared for a baby!

My first time touching him...on the only extremity that wasn't occupied by a monitor, tube, or wire:

What a sweet, beautiful little surprise!

2-Year Tubiversary!

Two years ago today Caleb had surgery to place his gastrostomy tube.  Did you know that's what "g-tube" stands for?  It's true.  Sometimes I forget that.  ;)

It's weird to think that he has spent more than two thirds of his life with a feeding tube of some sort.

From birth to about one month, he had an OG tube (oral gastric, meaning it went through his mouth and into his stomach).

Birth

1 month

From one to almost six months, he had an NG tube (nasogastric tube--meaning, it goes from the nose to the stomach).

1 month

1.5 months

 2 months

 2.5 months

3 months

5 months

From six months to 19 months he ate 100 percent orally.  There was a short time in there where he even ate well enough to not need feeding therapy!  For a few months we had no worries.  But right around his first birthday things went downhill fast.

6 months

9 months

10 months

11 months

12 months

Happy birthday!  So far, this is the only birthday where he could have cake.

14 months

15 months

16 months

Around 18 months he got his EGID diagnosis and at 19 months he started the elimination diet and got an NG tube again.

19 months

19 months

20 months

Almost a month later, exactly two years ago today, he had surgery for his g-tube.

21 months

24 months

3 years 8 months--Today!

What an evolution!  And what a roller coaster!  Thanks to the tube, Caleb is able to enjoy food for the first time in his life because we don't have to pressure him to take just one more bite.  He still doesn't eat enough to grow so we still depend on the tube quite a bit, but what he does eat, he enjoys.  And that counts for a lot!  Most days he eats enough orally during the day that we don't have to tube feed him until bed time.  He gets 13oz of half formula (EO28 Splash) and half rice milk using the feeding pump at 65ml/hour while he sleeps at night.  We're hoping the days of projectile vomiting are over--he doesn't throw up any more unless he's sick or really scared (like when I put him to bed in an unfamiliar place...that invoked vomit).  His (and our) quality of life is on the upswing, and we're hoping it stays that way!