Monday, November 17, 2014

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!

Friday, November 14, 2014

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!

Pumpkin Patch 2014

This is our fifth year of going to the pumpkin patch with our BFFs.  (See here and here.)  It's one of my favorite traditions!

Two 4-year-olds and two 2-year-olds.  Perfect buddies!

Do you have any idea how lucky I am to have gotten a picture this good?  My boys are SO hard to photograph!

I love this one.  This kid has my heart on a string.

Scaling the pumpkins!

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: