Tuesday, November 30, 2010

From the Heart

About 2 weeks ago, Barrett had a pediatric ER visit for an elevated heart rate. 

After an afternoon walk, I was checking him with a stethoscope during a diaper change, per our normal routine.  His heart was racing too fast to count.  Of course, I'm not a doctor and have no medical training, but I do have maternal instincts and a year of listening to his heart rate 8x/day under my belt.  I waited 10 minutes for him to settle down and kept trying to count his heart rate, without luck.  I think I counted it once at 230, but I may have missed a few beats because it was too fast for me to count accurately.  So, I called his cardiologist, pursuant to our "emergency plan," and his PA (who happens to be a sweet friend from college) told me to go straight to the ER.  Kristopher was out of town, but he immediately headed back to meet us.

The PA called ahead so we wouldn't have to wait and could come straight to a reserved room at the ER.  It is simultaneously nice and eerie to have a little special treatment at the hospital; it makes you realize that this is a true emergency.  When we got there, some of the nurses recognized Barrett from previous visits, and I guess from his pictures in the hospital ad campaigns.

I have to say, the pediatric ER is one of the top places you don't want to be recognized for frequent visits.  Although it is comforting to see some of the same sweet nurses who remember How It Was Before and therefore rush to give your baby the best medical attention possible.
Fortunately, he was not in SVT -- the EKG just showed "regular" tachycardia, which is still a too-fast heart rate, but not as scary and life-threatening as SVT (supra ventricular tachycardia -- around 270 beats per minute, causing his heart to tire out and stop functioning).  Crisis averted.  No PICU stay required!!!
Barrett has not had an SVT breakthrough since last October, when he had his last ER/PICU stay.  The cardiologist found a magical balance of heart medicines that Barrett actually responds to -- the regular heart medicines weren't effective for him, so he needed a metric ton of an extra-strong drug, in addition to the regular one.

We always knew that he couldn't be on the medicine forever, due to negative and controversial side effects of the strong drug.  The truth is, Barrett has been off his heart medicine for 6 weeks now.  The half-life of the strong drug is 6 weeks to 3 months, meaning that the medicine is just now starting to be out of his system and we are in the true danger-zone where his heart is unprotected by the same medicines that, just a few months ago during the fever/leukemia scare, the cardiologist described as "the thing keeping Barrett alive."

All of this predictably caused intense emotional turmoil, mostly fueled by the lingering pain and fear from almost losing Barrett a year ago, plus dealing with the feeling that it seems like we have so much more to lose now.  We know what it is like to hold him, love him, hear him laugh -- we've been blessed to be his parents for a whole year.  Without diminishing the pain of losing a child at any point in life, the thought of losing him now feels even harder than before because we would truly understand what we were missing and ache from the type of loss a parent never gets over.

So Kristopher and I decided to keep it between us, and avoid discussion of weaning Barrett off his medicines.  Although I'm not normally an intensely private person (this blog = Exhibit A), dodging this topic is our weird coping mechanism.  It was just too much to handle, even in polite and well-intentioned chit chat from people who care about him.  And forget about fielding questions accompanied by long, meaningful looks.  Although I know all of that comes from people who love Barrett, it is hard being put in that kind of an emotional situation, especially in public.  I couldn't even sit through the CMA awards without sobbing and hiccupping uncontrollably when The Band Perry performed "If I Die Young"

I guess I was living under a rock or submerged in Christmas carols, because I hadn't heard the lyrics to this song before.  Geez!!  I had to leave the room because my sobs were scaring Barrett.  I'm chosing to chalk up that outburst to pregnancy hormones...

Nevertheless, after the latest ER visit, it seemed like a therapeutic idea to finally come clean.  Also, I hatehatehate telling bald-face lies when friends and family ask me how he's doing or when he's coming off his medicine.  The Jiminy Cricket in my head goes bonkers.

"Let your conscience be your guide."

So, that's the latest on Barrett, although we still like to pretend that it isn't happening, aside from compulsively checking him with a stethoscope.  Please keep him in your prayers, especially these next few weeks.

Wearing his follow-up 24h heart monitor at home. 
The results showed that his heart rate was still a little too high, appx 190, but he didn't go into SVT while he was wearing the monitor, which is a good sign.  He was a trooper and didn't seem to mind all of the stickers and little black recorder!  Although, it did require creative wardrobe options to keep an active pre-toddler from accessing the recorder box...

Friday, November 19, 2010

Pregnant = Geriatric?

I don't really consider myself old quite yet, considering that I am still safely within my 20s, at least for a little longer.  But I think there's something about pregnancy that temporarily (please, let it be temporary) turns  you into an old lady.  I was prepared for the early bedtime, frequent bathroom trips, propensity for decaf tea, doctors prodding you to wear sensible shoes (I'm not even going to comment on support stockings), and special diet restrictions. 

However, my new hip pain took me by surprise -- this didn't happen last time!  Does pregnancy cause joint pain??  Am I getting old??  The golden years are here already???

Apparently, the baby has settled on my sciatic nerve, which can cause shooting pain into your hip and down your leg (so glamorous, I know).  I had a little taste of this on my left side earlier in pregnancy, but for the most part, it felt like the other contractions I was having related to carrying Barrett around -- he exceeds the weight amount I'm supposed to carry when pregnant, but he doesn't walk yet, so I carry him all the time and put him in and out of his crib/car seat/highchair/etc, its just a reality of life. 

Anyway, this sciatic nerve pain is serious business!  Now that baby Charlotte has re-positioned herself, the pain in my right hip literally takes my breath away!  It's hard to feel like a glamorous, pulled-together mommy when you've developed a slight limp to avoid activating the super-sensitive pain. 

Yesterday, I was half-running/skipping/hurrying to answer the phone when the pain hit me all of the sudden, made my legs stop working, and I fell flat. on. the. floor.  Someone, please bring me the Bengay, a medic alert bracelet, and my AARP application.

And let's face it, the day where Kristopher has to help me up from playing with Barrett on the floor is just around the corner.  Because we all know I'll be stuck there like a turtle on her back.

Monday, November 8, 2010

I'm Going to See a Man About a Horse

A carousel horse, that is. 
Barrett and I visited my parents recently, and my mom had a great idea -- let's take Barrett for his first carousel ride at the mall!  Everything was already decorated for Christmas (which I love) and the carousel looked just as pretty as I remember when I was little.  The ride went pretty well...

"Pretty well" = no tears

We put him on the horse (not one of the wimpy stationary giraffes or frogs for us!) and got ready for the ride to start.  But then, the carousel started going around in circles, as carousels tend to do, and his horse started moving up and down. 

He was a little unsure about this part, but still, no tears, so it was a success!!  Of course, we went for a second ride too and sat in the stationary sleigh this time, which he liked too.

Afterwards, we stopped by Haagen-Dazs for ice cream (raspberry sorbet for me and German chocolate for mama -- the same flavors we've both been getting for the past 25 years).  Barrett loves tasting ice cream, so he was all for taking part in this tradition.

I thought it was so cool to take Barrett for the same carousel/Haagen-Dazs combo treat at the same mall where my mom took me and my sister when we were little.  Pretty neat, huh?

Baby Sprinkle for Charlotte Vivienne

My mom and sisters graciously threw a baby sprinkle for Charlotte and it was so much fun!!! 
(By the way, a "sprinkle" is something we made up...it is a smaller, family-version of a baby shower) 

My sisters, niece, aunts and cousin Jen came, with Jen's two precious boys, plus Grandmom and my mom's BFF since before the beginning of time, Mrs. Elaine (who is like an aunt anyway, so it was "all family")  :)  We had a great time!! 

We had a fancy tea party ~ very frilly and feminine ~ perfect for celebrating a little girl. 

Kim, with baby cousin Andrew

Me with Jen

Charlotte was sprinkled by lots of beautiful pink lovies, booties, gowns, dresses, sweaters, and all the trimmings. 

(excuse the facial expression, but notice that the baby lamb is wearing mascara!)

Seeing all of her tiny beautiful things put away in her room makes it all feel so "real" and I can't believe she'll be here before we know it!  It is amazing to know that I love her already, and it feels wonderful to know that so many other people already love her too, along with all of the sweet babies in our family~~

Taking a walk with Aunt Jessica

Cousin Nathan was very sweet to push Barrett in his jumper-turned-swing

Happy Halloween

When you're getting a 13m old child ready to do something special, especially if it involves a costume or outfit, it is nice to have a dress rehearsal (ie, sorority row trick or treat) before the actual event (Halloween).  It gives you two opportunities to take pictures to document the fun.  I need to write that down somewhere...Because I've learned as a mom, if you don't take pictures, it is as if the event never happened. 

This year, it was even better to give Barrett extra time in his lion costume so he could cultivate his "roar."  Kristopher and I will swear up and down that he can say it, although I don't think he ever said it in anyone else's presence, so we don't have any witnesses. 

In fact, these days, Barrett can say his own equivalent of several words:
::  Hi! and Hey!
::  Bye bye
::  Dada
::  Mama
::  Uh oh (although not always used in the context of something "accidentally" dropped...I think he throws stuff down just to have the opportunity to look up and triumphantly say "uh oh!!")
::  Dog (da)
::  Sassy (sounds like "I see")
::  Alright!! (this one is my favorite, he says it clear as a bell!)
::  Eyes
::  Bath
He can also mimic a slew of other sounds, but I think these are the only "real" words that he consistently says with intention to convey the actual meaning of the word, instead of just repeating it back.  However, don't always expect him to say these things on cue. 
He's like Michigan J. Frog that way...he happily does his song and dance for us...

"Hello my baby!  Hello my honey!  Hello my ragtime gal!"

But, then gets stage fright later. 


Oh well, that's okay~~