'Cuz every girl's crazy... (part 2)

...'bout a sharp dressed man.
-ZZ Top, Sharp Dressed Man

I have to give a shoutout to my gal pal Lisa for pointing out the (DUH) obvious ... which I completely missed. "Sharp Dressed Man" was oh-so-perfect for the other fun thing I did this weekend - the consignment sale. I just HATE when I use a song then find a better occasion for it later. We'll just make this a bonus post about all the dressed-up-ness in my life this weekend.

Saturday morning, Lisa and I headed to Morrisville for the Kids Every Wear consignment sale. Oh. My. Goodness. I was out of control. Seriously OUT OF CONTROL. They really didn't need anything because my friend Amy shares enough hand-me-downs to outfit triplets. She's given me plenty of clothes to keep them well-attired every day and well pajamed every night.

But I have this thing with dressy church clothes - I adore them. The fancier the better. I try hard (well kinda hard) to dress my boys like boys, but I'm a big fan of smocked stuff. My friend Lisa? Right there with me. We both love the snazzy baby clothes and love to find bargains on said fancy stuff. My hubby? Not so much. He thinks they're cute, but he'd just as soon send them to church in khakis & a polo shirt.

So how did Lisa and I do at the consignment sale? Strasburg! New with tags! At less than 1/2 the price you'd find it in stores. Rags Land - smocked with a COW on the front! AND IN THEIR SIZES! Oh, and did I mention saddle oxfords? Matching Stride Rite saddle oxfords? A PAIR IN EACH OF THEIR SIZES! At only $6! Heaven, I tell ya. It was shopper's heaven for me. So much so that I took my mom over on Sunday to buy all the things I hadn't bought the day before. It was half price on Sunday! How could this coupon-clipping bargain hunter resist? Retail therapy.

They are now set for the summer and can probably wear a different outfit each Sunday of the summer. But it's more than church clothes. I love to envision them in these fancy duds, frolicking barefoot on the beach like the trendy portrait photography that's all the rage these days. Sidenote - Y'all know this is the stuff of my imagination. Our family beach portraiture looks something like this:

And you wonder why I didn't send Christmas cards?

But I'm not giving up on my dream - no sir!! I will keep dressing my kids and letting them get sand in their smocked frocks. And I'll continue to wonder why our pics look like these above instead of the peaceful, smiling children I see others posting.

And on a completely unrelated note, Lil Luke is having surgery tomorrow (Tuesday) bright and early. He's having tubes put in his ears and adenoids removed, and we're uber-hopeful that the snot rivers will cease. (Think that will happen instantaneously? I'm sure counting on it.) So say a little prayer for him that everything goes smoothly and that we're home by lunchtime.

'Cuz every girl's crazy...

...'bout a sharp dressed man
-ZZ Top, "Sharp Dressed Man"

So, my blog has gotten all dressed up - whatcha think?

On Friday night, my awesome bloggy buddy Joye came over to play. (And to eat Girl Scout Cookies, which we put a pretty nice hurtin' on.) I think her blog is just lovely, and she came over to help me prettify mine a bit. You'd think that by working on it until 1 a.m. we'd have been able to teach ourselves significant amounts of html AND become experts on PhotoShop. Right? Well, not really. I'm sure we could have done both of those if we hadn't been so busy catching up on each others' lives and chatting about everything from Jon Bon Jovi's backside to the bedside manner of cardiothoracic surgeons to potty training. We had an awesome time hanging out, and between our random topics of conversation, she taught me all kinds of cool web design things. I spent much of the day on Saturday trying to put my new tricks into practice.

Unfortunately, I now know just enough about PhotoShop to be really dangerous. I can destroy layers with the best of 'em. I can toss in some text and really junk up a picture. And I know just enough html to take a decent looking website and make it look like a hot mess. At one point, I had polka-ovals on one side (not polka-dots mind you ... stretched out ugly ovals!) and stripes on the other side of the blog. I had my text going way over the edges of both borders, and of course that RENT video in the last post is still about 2 sizes too big for the space. (I've only tried to fix that 17 times.) In the end, I decided to go with the snazzy new header at the top and stick to one of the templates that blogger is kind enough to give to me. My consolation is that I think most of you are reading this via some sort of reader and never actually see the layout anyway. Content is what counts, right? (I'll just keep telling myself that.)

But even if my blog looked exactly like it did on Friday morning, I had more fun than the law should allow. In the words of my dear friend Mindy, "Friendship is good for the soul." True dat! So, THANK YOU Joye for a fun night, for great advice (which I absorbed a tiny portion of), and for being a really wonderful friend.

PS - I did add this neat little signature ... it's not exactly the way I sign my initials, but it's close. And I likey, even if I did copy the idea!

In daylights...

...in sunsets

in midnights and cups of coffee

in inches, in miles

in laughter and strife

five hundred twenty five thousand six hundred minutes

how do you measure a year in the life?

-Jonathan Larson (Rent Soundtrack), Seasons of Love

Okay, I usually try to avoid re-using the same songs, and I used this one 2 years ago to celebrate Jay's first birthday. But I simply can't think of a better song to mark the end of Luke's first year. (Even if you know the song, listen/watch the video above. It just makes me happy!)

This year has seen sunrises & sunsets, and I've seen more midnights & cups of coffee than I can count. But I can measure this year in loads of laughter, and I'm so grateful that I've had the opportunity to watch him grow from a tiny newborn to an adorable smiling, crawling, giggling, crazy-haired little boy. Most of all, I'm measuring the year in the way my love has more then doubled by having two kids.

(baby yawn - my fave baby trick!)

It's interesting to get to this point for a second child. The awe I felt at seeing Jay roll over for the first time, take his first steps, give me those first grins ... it's different with a second one. I'm not so amazed by watching it happen, but I'm more proud of his accomplishments - for himself. The first time, I was so overwhelmed by it all, and it was somehow about me experiencing parenthood for the first time. With #2, it's all about him. I'm grateful for the chance to take it in, to really be able to fully observe and appreciate all these milestone moments. And really, they're all milestones. It's not just the first smile that's worth celebrating. The silly grins with 2 crooked teeth are just as adorable as the toothless ones, and this time around I've been better able to appreciate life's little moments of joy.

You know, sometimes I feel a little sorry for him as a second child. I feel like he misses out on some of the attention lavished on a first child, the "specialness" of being the first. His first birthday party was a little smaller, a little less carefully planned, a little less original than his big brother's. But there are some real benefits to being second. I'm so much more laid back this time around and have been able to enjoy him more. Those first months at home with him were the best of my life. I spent a lot more time snuggling, less worried that letting him sleep in my arms would create bad sleeping habits. I will let him pull the pots & pans out of the cabinets and bang to his heart's content. So what if they end up with scratches? I give him the chocolate-covered spatula. I let him be a boy, even if it's a little messy and a little loud and a little crazy. That's life, and he's helped teach me to lighten up and enjoy it.

(Yes, he really did put a hurtin' on about half the cake. And some of it really did make it to his mouth. And he really was smiling while he ate most of it ... by this point, I think he was going into a sugar coma.)

I will certainly admit to a touch of sadness about his first birthday. I will miss being able to think of him as my baby - though he's been more toddler than baby for a while now. "Mr. I'm too cool for bottles" is a sippy man these days. I know he'll be walking any day now. He's always been my snuggler, and I hope that turning one doesn't mean he won't need to be rocked to sleep anymore. (See, I really don't care about those bad sleep habits!) And while I can hardly wait for the fun toddler stage, I will miss these baby days. They are gone in the blink of an eye.

So Happy Birthday my dear baby boy. I am so proud of you and all that you've learned in your first year. I love watching you grow up and I can't wait to measure your next year in steps and words and laughter. Measure your life in love.

This is my kind of town, Chicago is...

My kind of town, Chicago is

My kind of people too

People who smile at you

-Frank Sinatra, My Kind of Town

With the -19 degree windchill, I'm not sure Chicago is my kind of town. And I'm not too sure about the smiling thing ... most people's faces are wrapped in scarves, so it's a bit hard to tell if they're smiling. But one week ago, I was with my kind of people and having a blast in the windy city.

(Oh yes, it was THAT cold!)

Why was I in the windy city, you might ask? Well, I can't really tell you. I signed a contract that I wouldn't blog about my experience. (I'm no social media expert, but I can say for sure that people will talk. I might suggest that some folks in this organization embrace the power of social media rather than trying to quash the discussion, but that's a conversation I'm not planning to have with Harpo. Uh, I mean, the organization who told me not to blog about what I saw.)

So, what did we do? A picture's worth a thousand words, I think!

(I was seriously hoping for a cutout we could pose with, but this larger-than-life poster seemed to work just as well!)

My fantastic friend LJ got 4 tix to see something fun in Chicago, which I of course am not blogging about. And who did we see there - other than this super-cool poster of my Aunt O? Well, even though we were on the very back row, we had a great "View" (cough, cough) of some wonderfully entertaining women in the news media. We laughed a lot, and I'm not ashamed to admit it ... I got a bit misty eyed when those 6 amazingly talented women walked onto the stage. At 81 years old - EIGHTY ONE! - Baba Wawa is still as sharp as ever. Wow - to be in the same room with those folks!

The studio set of the event I saw (you know, the one that I'm not blogging about) was as gorgeous as it looks on TV. The folks were friendly and excited, and the warm-up girl was truly entertaining and got us pumped up about seeing Auntie O. I was somewhat surprised how little Auntie O actually interacted with the audience, but her friend Yippee (okay, if you can't figure out who I'm talking about here, I'm sorry. But I really chuckled at myself over that one...!) chatted up the audience at every commercial break.

Awesome, fantastic time. I loved every second of it!

But don't worry - if you forgot to set your DVR for 2/11/11, you didn't miss my 15 minutes of fame. Or my 1.5 seconds. Or my .15 milliseconds. We didn't make the camera, and we didn't get any "favorite things" to take home for souvenirs. But we were there - And I can say that one life experience is checked off my bucket list!

We did lots of other fun things that I really CAN blog about though. We ate the best Chicago-style deep-dish pizza that I've ever put in my mouth. The crust? Such deliciousness. If you're Chicago-bound, eat at Giordano's first.

(I wanted to eat the whole entire thing. By myself.

I tried to share with my friends, but it wasn't easy.)

We saw the city from the Sears Tower, officially now renamed the Willis Tower, but I don't think anyone actually calls it that. I highly recommend the view at night - it was absolutely gorgeous. We saw the sights, shopped the stores, and ate our way across the city like tourists. Well-layered, snow-fearing tourists in ski masks.

(The Chicago Bean, or Cloud Gate - one of the coolest public art projects I've ever seen.

If I lived in Chicago, I'd buy a DSLR and spend all my free time taking cool, artsy shots of this big shiny thing. So awesome!)

But more than any of the sights, more than any of the food, even more than the super-fun trip to see my Auntie O, what I enjoyed the most was 3 days spent with some wonderful friends. We had a fantastic girls' weekend, and I loved every second. But ladies, next time we go somewhere, let's check the weather first, okay?

You keep me searching for a heart of gold...

...and I'm getting old.

Keeps me searching

for a heart of gold

and I'm getting old.

-Neil Young, Heart of Gold

I'm thrilled to participate in Stefenie's blog event, talking about how CHD has impacted relationships in my life. But I must admit that I've struggled writing this post. Since becoming a mom and entering the CHD world both happened for me at the same moment nearly 3 years ago, it's really hard to define what changes are a result of parenting a heart baby, and what changes are just part of becoming a parent.

So what's changed in my relationships? The biggest relationship change for me is that Derek and I have learned to lean on one another in a way we never did before kids, before our lives moved into medical mode.

I've come to see just how incredibly smart my dear hubby is. Did y'all know he was *this* close to doing veterinary cardiology, instead of large animal medicine? In reality, HE may never have been so serious about it, but his professors tried convince him that he'd be a good cardiologist, and I know they are right. He can talk surgical techniques with the experts, and then explain it to me in a way that is simplified but not simplistic. He asks good questions. His confidence in the medical realm is so reassuring, and I'm incredibly grateful for that.

But more than just getting a peek into his medical expertise, I've come to appreciate his quiet strength. This summer when we experienced the most stressful time of our lives, we never once got frustrated with one another. That seems unbelievable, even to me, and I'm sure my dear readers are saying "Oh sure. Your relationship is so picture perfect that you never fought? Not even once? Not even getting snippy with each other? Oh gag me." But it's true - we clung to each other when the world was spinning off its axis.

That's not to say we didn't get frustrated with those we loved - we were snippy with our parents, with Luke, even with Jay. I remember one night when we'd been trying to coax his meds down for over an hour, I shouted "Just take the medicine dammit!!" Not really my finest parenting moment. But Derek and I always came to one another for that place of comfort. I can't tell you how much it meant to know there was someone who was always on my side, holding my hand through the hard parts.

I wish I could explain why other couples raising children with major medical needs find their relationship strained, while ours has grown stronger through the trials. Part is that our marriage is rooted in friendship, and we genuinely like each other and enjoy being together. But part is that we have no illusions of marriage being all wine and roses and romance. Let's take a peek at our "day of romance" yesterday, shall we?

For Valentine's Day while I struggled through work and class with the early symptoms of the flu, Derek stayed at home with Luke who has pinkeye. Just for a special Valentine's day surprise, daycare called him to get Jay because he had spiked a fever. About that same time, he realized that Luke also had a fever. Of course he has a fever and pinkeye - he's supposed to have surgery the next day. So off to the pediatrician with both kids at 5pm. No ear infections and the flu tests were negative, though they were suspicious enough of the flu that we did get the coveted Tamiflu and Tylenol for Jay. Unfortunately, our star medicine taker was no where to be found, but after about 20 minutes of wrestling in the peds office he got it all down...and promptly puked it all back. They then had to kill 30 minutes while the pharmacy compounded the Tamiflu into a liquid, so it was now almost 7pm and he had two tired, hungry, and sick kids crying in the back seat.

Once at home, Luke was quickly appeased with some goldfish, and he readily took his Tylenol. Jay, on the other hand, would have none of it. First try with Tylenol at home, he spit half of it out and got so upset he peed on the floor. The second try required holding him down and forcing it in his mouth. Next, we need to check his INR, since the last time he got sick it skyrocketed to 3 times what we wanted. He promised to be brave for his finger sticking. He was brave, up until he saw the sharp needle headed for his finger. So it was holding him down for the second time in an hour. INR was low, not ideal, but better than sky high.

Now Luke is out of goldfish and crying again, so back to find some more food for him. While he eats some cheese, Derek decides to tackle the Tamiflu. It's grape flavored and doesn't seem to taste too bad, but Jay will have none of it. So, he goes to sit in rocking chair while Derek finds Luke a legitimate dinner. After he eats and gets sent to bed, Derek checks back on Jay, and he has fallen asleep in the chair. He wakes him up, and Jay falls apart again saying, "I'm not a big boy Daddy, I'm not a big boy." Since it's probably pretty important he get his Tamiflu, Derek has to hold him down for the third time.

After that, Jay settles down, and eats dinner. After dinner, more medicine. It's time for Jay's usual enalapril and coumadin. He willingly takes the enalapril...

... and pukes all over the floor. So in spite of the low INR, he didn't get his coumadin. He was quite ready to go bed by this time. After getting both to bed and feeling like a horrible dad for getting so frustrated with Jay when he was feeling so sick, Derek found the Valentine's day card Jay had made for us at school, and pretty much fell apart.

Meanwhile, I'm getting sicker and sicker during class. I'm wearing my coat indoors, in spite of the fact that it was 65 degrees outside. I'm shivering, hot, and starting to feel achy all over. By the time class is over and I get to the car, my hands are shaking so much I can hardly open the door. This is clearly no good when we have 2 suspect flu cases at home and my symptoms sure are a lot like the flu. Oh, and we're still thinking of surgery in the morning! Geez.

So when I got home after all this, you can bet there were no wine, roses, or romance on Valentine's day. We canceled Luke's surgery, crawled under the covers, and tried to decide whether this was the worst Valentine's ever. We laughed about the Valentine's day when our car got towed, leaving us stranded downtown. The one where Derek got called in for some llama emergency before we even got to the restaurant. The one we spent all night trying to make the dog puke because he'd eaten half a bag of chocolate. Yeah, we've had some winners on the day of love.

But you know what? I don't think this was the worst. I had the people I love most with me. My awesome hubby was willing to handle all the sickness so I could work and go to class. I have a husband with a heart of gold, and even on the worst of days, I am so lucky.

These are my heart songs...

...they never feel wrong

And when I wake for goodness sake

These are the songs I keep singin'

-Weezer, "Heart Songs"

Many my favorite blogs are written by moms of heart babies. (See my Blogs With Heart link above - fantastic title shamelessly stolen from Stefanie's blog!) Some are touching, some are funny. Some are by people I know exclusively online, some I now consider friends. But during the past week, many of them have been celebrating Congenital Heart Disease (CHD) Awareness week. My blog has been noticeably silent.

I think advocating for CHD survivors by raising awareness is valuable and important. But I think that a lot of people want to raise awareness without much consideration of what that really means. My thoughts on this issue stem from some things that the late, great Steve Catoe (aka The Funky Heart) posted often on his blog. It’s not about awareness – it’s about education. Awareness with a purpose.

Want to know why I feel a bit conflicted about “raising awareness” for CHD?

Quick – what color is breast cancer? Have you bought something pink lately? The Susan G. Komen Foundation (which I think is a great organization) has been masterful at getting their pink ribbon runner onto boatloads of products from apparel to snack foods. Everybody knows about the Komen Foundation and that they “support” breast cancer. But what do they do with all those yogurt lids? How does that improve the lives of women with breast cancer? Has the money invested in breast cancer research, treatment, and support for survivors improved life expectancy or reduced the incidence of breast cancer?

Sadly, not much. In 1991, 117 women died each day of breast cancer. Today, it's 110. (Great article from the Chicago Tribune HERE - it talks about how and why advocacy and awareness isn't making a difference.) And y'all know that breast cancer is a cause near and dear to my heart.

So, forget simple awareness. Advocacy is great, but it's useless without an end product. I want education that results in action:

#1 - I want pulse oximetry screening for EVERY newborn in EVERY hospital. Never heard of a pulse ox? (It doesn’t involve any oxen, I promise!) It’s a small red light that is placed on a finger or toe or foot, and it measures the level of oxygen circulating in the baby’s blood.

(yup, that's Jay's adorable baby toes!)

“Normal” is 100, meaning 100% of the red blood cells are carrying oxygen. This test is as simple and painless and non-invasive (and cheap!) as a test could possibly be. There’s no reason that we shouldn’t be doing this on every child as part of the basic newborn screenings, just like hearing screening.

Immediately after Jay was born, they heard a heart murmur. They’re very common in newborns, and many resolve on their own shortly after birth. The pediatrician still heard it several hours later when he performed his first exam. Again, still no real concern. It wasn’t until my incredibly wise, carefully observant, wonderfully compassionate lactation consultant - and friend – noticed his struggles to breathe & nurse that Jay was tested with a pulse ox. I will forever be grateful that she acted so quickly to stick that little red light on his toe.

A low oxygenation reading doesn’t mean that a child has a heart problem. And some heart problems aren’t identified by low 02 levels. But it can be one early and easy piece of evidence to identify problems before a child leaves the hospital. Babies with heart problems don’t necessarily look sick. Mine didn’t.

#2 – I want better prenatal screening to check for heart defects. Did you know that 1 in 100 children born in the US will have some sort of a heart defect? Read that again - 1 in 100! That’s huge!

I struggle with this a bit because CHD are not always easy to diagnose prenatally. There’s no blood test, no genetic marker for heart problems. I had a level 2 ultrasound while I was pregnant with Jay, and yet it was missed. But I want better ways of discovering CHD and treating it early. Did you know that there are some heart problems, even some of the most severe defects, which are now being treated SURGICALLY in utero? How cool is that? I want to find better ways to identify and treat heart defects early. Very, very early.

Agree with me? Here’s what you can do:

• Ask for a pulse oximetry reading on your baby before leaving the hospital. Tell your friends to do the same.

• Contact your legislators, your state’s department of health/human services, and other agencies to say that you support this testing for all newborns.

• Support research for new treatments, improved surgical techniques, better medications (y’all know Jay takes tiny doses of rat poison every day – in this day & age, we’ve got to do better than that!). Support research that improves outcomes.

This weekend, I was in Chicago with some wonderful girlfriends (more to come on that topic soon!). But up and down the Magnificent Mile, there were bunches of these adorable heart statues, each decorated by different groups with a different theme.

(see that one above?! It's a heart that's been stitched up!)

At the bottom of each one was a message – a little tidbit of information about your heart. Tips for keeping your heart healthy. Facts on congenital and acquired heart disease. Signs of a heart attack.

(These two were both about diseases of the heart valves.)

Now THAT’S awareness that means something. And I'll keep singing my Heart Songs in the best way I know how.