The 4th (and 5th... and 3rd...)

Last week I was exhausted, so I played hookie a half-day on the 3rd to get ready for a fun, extended weekend with the girls. Here are a few of my favorite memories from our long-overdue family time...

Wendesday, July 3rd. Hat Day!!

Just a few of the many hats we gathered and played with. As a bonus, I discovered that I have a living, breathing garden gnome in our home, which should help satisfy my desire to go out and buy a ceramic one for my yard.


July 4th Fun at Casa Thies

We spent the day listening to Katie beg us to "do fireworks" and Sadie scream for no reason, which she often does to keep us on our toes. I felt like crap all day (thank you, Lilly drug company), so we stayed home and created our own festivities. The evening ended with our discovery that Sadie is terrified of whistling fireworks, Carly likes to eat discarded firework containers and that fireworks that "shoot flaming fireballs" are illegal in Virginia for a darn good reason. Thankfully, it had rained just before we set that one off... the singed leaves that fell down from the sky were easy to stamp out in the damp grass.

Whee! Mommy managed to talk us into matching, patriotic outfits!

The moonbounce... always a hit in our household.

Well, until mommy gets in, gracefully hitting the vent tube and the whole thing collapses.
Then it's just funny, not so much "fun."


July 5, The Tomato Festival

For the first time in the three years that we've lived in Bubbasville, we braved the natives and tried out the local Tomato Festival. I enjoyed camouflage watching (I can still see you, people!), the plethora of churches trying to push water on me in exchange for my soul, and watching the many ways in which people displayed some nifty confederate flag stickers that proclaimed "I support national Confederacy month." One very pregnant woman Jason encountered had a sticker on each... well, use your imagination. Good times.

My parents joined us for the humid outing, and despite the stress involved in taking small children out, we managed to create a few nice memories while there.

Mom stops to cheese it up with the girls and Mark Warner, US Senate candidate and previous VA governor. I don't think she realized he's a fairly liberal democrat (did you, Mom?! wahahahaha). Warner was rumored to be a VP consideration by Obama, but he declined, citing his desire to have more time with his family than that position would allow. So, instead, he was sweating his butt off at our hillbilly fair in order to garner a few votes. Yet another reason why I will never enter politics.

Katie fed a donkey at the petting zoo area, and the donkey became her new best friend. He followed her everywhere, nuzzling her for another scratch behind the ears and more food. I so wanted to take him home with us. The neighbors would LOVE it! Katie agreed, but Jason was having no part of that discussion. Sadie, meanwhile, spent time kissing and hugging a calf, mooing softly to it. If only I could get her to be that sweet to her sister.

In the midst of all of the festivities, a photographer walked up and asked if he could take photos of the girls while they decorated tomatoes. I got an email today, and it seems that we are once again "featured" in our local paper... yeeee haww! Not only that, I think we made the front page news. And, my mug on this shot is MUCH worse than my last one in this exciting publication. At least the girls looked adorable. Jason and I looked angry and uninterested. Which is probably accurate, but all the same... front page?! Ugh.

It's official - I think I have to admit we're now locals. But you'll never see camouflage, rebel flags or big bangs adorning on this Bubbaite!

Not what I had planned...

I awoke this morning, once again, to chaos and disaster. This time the girls had taken the newly purchased DragonBerry Shampoo and Blueberry Burst Body Wash and lathered everything from waist-height down on the lower level of our house into bubbles (or at least applied a slimy film which would later be "bubbled"). Seriously, what did I do in my past life to deserve this retribution?!

Every baby doll, both dogs, the coffee table, all the Disney plasticine toys, the Shliech animals, the bathroom sink, floor and both girls' lower extremeties were covered in the sticky goo. "But Mommy," Katie told me as I repressed a scream of rage as I realized the magnitude of the latest morning disaster, "We didn't go outside. And now the house smells good." I rinsed and washed, producing even more bubbles (much to their delight) and still found a spot on the carpet that is deeply stained with shampoo. I ran the steam vac over it this afternoon only to... you guessed it... produce more bubbles.

I threatened Katie with an eternity of time out if she makes one SINGLE other mess before I can hit the bottom of the stairs in the morning. Double eternity if she lets Sadie out of her crib. Her reply? Sadie can get out on her own now. Oh crap.

I never got a chance to memorialize George Carlin, one of my all-time favorite comedians who passed away last week. I did so this morning by muttering, thinking or screaming into a pillow six of the seven dirtiest words from his old 70's routine. The 7th word just didn't apply, or I would have used that one, too.

To make it all even better, I'm having some hellacious withdrawals from a medication I started a couple of months ago. When I had Katie, I began to suffer from anxiety attacks (though I didn't know that is what they were at the time). I did some medications back then for a few months, got my head screwed on straight again, and weaned off of them. I'd been able to control them since (now knowing what they were and how they came on) on my own, but in March they began to rear their ugly head once again. I wonder why? That was about the time the girls started their early morning escapades. So, I went to my primary care "nurse" (do doctors still exist?) and asked for something to help me along for a while. She gave me Cymbalta.

Two drugged-out weeks later I started having weird symptoms. Increased anxiety (but no panic attacks) and newly onset depression that I'd never before experienced. Insomnia. Cold sweats. Hot flashes. Irritability (yes, I can be worse!). Constipation like a... well, like it was not good. Then last week in New Orleans it doubled, and I added the shakes to the list. Enough was enough, so I quit. Cold turkey. I had only been on it for about 50 days, so figured I'd do every other day for a week and stop.

Now I have more fun symptoms. Night terrors (which I've never had before). Aching all over. Sharp pains in my legs and feet. Blurry vision. Extreme fatigue. Chills. What the heck?! I looked it all up online tonight and found out that these are all fairly common withdrawal symptoms from Cymbalta. I should have known, given my (and my kids') history with meds. I'm about to go the Tom Cruise route and get all psycho about pharmaceuticals. Tomorrow I get to visit with the lovely nurse who suggested this route toward wellness. I can't wait. She has no idea what she's in for. If I'm in a padded room by the end of the day, please promise to visit and wear a sunny yellow color to cheer me up.

So yeah. After being home for two nights full of night terrors, bathroom visits and incessant sweating, I'm awoken to what looks like a slime attack from a Ghostbusters flick. The devil mommy on one shoulder was oh so close to convincing me to spank them both and send them to bed, as advised in nursery rhymes and by most parents with more than 5 children. But angel-Montessori-loving mommy on the other side balanced her out and the girls ended up with a stern admonishment, a few timeouts throughout the day as required and the threat of eternal timeout and no-playdates-ever-again for Katie should she ever decide to do this again.

Please, please, let the threats work. I need a morning off!!!

Kicking Off the Summer

Summer has barely started, but we've been busy.

Katie's preschool days are officially over, and she graduated near the end of May. I'd be lying if I didn't say that I'm a bit sad... she just seems to be growing up too quickly. Since graduation she's also finished up a season of soccer (and received her first-ever trophy, which she is SOOO proud of), had a ballet recital, stayed a week with her cousins and grandparents, went to a local amusement park with a friend and has still found lots of time to climb the walls and tell me how bored she is. This is week 3 of summer. Here's a few photo updates of our fun...

The Dora-The-Hooker Dress. Here it is. The most hideous children's apparel ever conceived. Notice the black and white polka-dots. Purple, lime green and orange stripes on the skirt, completed with pink tights and ballet slippers. And, you can't see it well here, but there's a round disk pinned to her head that matches. For this costume, we paid $60. Would I do it again? In a heartbeat.

At both her rehearsal and recital I held back tears derived from laughter. The little ones were just so cute, it was almost unbearable. Of course Katie's class had the ugliest dresses ever imagined. The other prima ballerinas had gorgeous, poofy dresses that reminded one of sugarplums, flowers, and childhood dreams of fairy land.

Katie's reminded me of women that I've seen working the streets in Tijiuana.



Dressing Herself. Sadie's all about doing everything herself these days. She picks out her own clothes most days and screams the others when I insist she wear something that is presentable outside of the house.

Here we see her wearing her very FAVORITE thing in the world - the Gap Rainbow Jacket. The Gap Rainbow Jacket is worn even on 100 degree days with humitures over 110. I don't fight it. I figure she'll take it off if she gets hot enough.

Her other favorites are also in use in this photo. Notice the poofy, flowery skirt. It has matching knickers that she loves to show anyone who wants to see them. And the black, shiny shoes with rhinestones. This girl loves the bling.

She is very particular about her clothing, and once she chooses a favorite, I have to be sure to wash it at least twice weekly... she won't go anywhere without it.


Popsicles and the Pool. Jason's only request for Father's Day was that we spent the day together relaxing. We had planned a trip to the amusement park, but skipped out when it got too hot outside. Instead, our entire family enjoyed a great day outside. The girls lounged in the pool, sucking on popsicles, until they decided to get rowdy and drench mommy and daddy with the water that is now no longer in the pool. It was a nice relaxing day - one we rarely share together, with all four of us just enjoying the outdoors and each other's company. I hope for many more days like this this summer!

Another Mixed Bag

Renewed Ban on Walmart. Due to the need to penny pinch thanks to ever inflating gas prices and the inability to get rid of our gas-guzzling SUV, I broke my promise and headed to my most hated, dreaded, local W. I finally justified my hiatus from shopping there - not a penny saved. I spent quite a while perusing, carefully seeking bargains. What I found is that my beloved Targét is MUCH less expensive in most areas - kids clothes (and much more stylish), snack foods, toiletries and diapers to name the big ones. Yay - I can once again justify my hatred of the ugly side of big business!

Preschool Ballet Rocks. More to come on that in a later post, when I load the photos and video. Let's just say I cried my eyes out... from laughter. It was well worth every penny invested in the hideous, Dora the Hooker costume for that one hour of comedy.

Yackity Yack. Sadie's talking up a storm these days. Today she got a scrape on her knee. Tonight she told me as I changed her "Mama, I Bad Boo Boo Knee" clear as a bell. She's 21 months in 2 days. She loves to boss Katie around... "TahTay, BAFF!" "TahTay, KeenUp!" and "TahTay, go ny-ny."

Japan is ON! Yep... it's definite... I'm going in 8 weeks!

More requests for your energy/thoughts/prayers:

• Amanda is back in the big house for another intensive round of chemo in an effort to wipe out the leukemia cells that survived the first round. Also, it looks like she's facing bone marrow transplant in the near future. Stay strong, 'Manda!
  
• Jameson is back home and healing after a successful Fontan (heart surgery). Hooray!
• Harlie goes in tomorrow for her jaw reconstruction. Good luck, Harlie, and hang in there, Christy!!!!
  

Worst. Morning. Ever.

I awoke to the sound of a cat mewing this morning. Strange, I thought to myself in my semi-conscious state... our cat Buster doesn't meow. He makes a gutteral "growww" sound. But this was definitely a meow. Hmmm.

I opened my bedroom door to find a strange cat sitting there. Interesting. How did he/she get into my house?

I stumbled in to brush my teeth and put on some eyes (glasses or contacts) so that I could get a better look at our feline visitor. As I put in my first contact, I thought 'maybe he came in last night with Jason, who didn't notice.' As I put in the next contact I realized it was quiet downstairs... too quiet. Especially for 7 a.m. I raced down the stairs.

As I came to the bottom of the flight, I heard a bump and a scream. Katie and Sadie were by our kitchen door, wearing jackets and their pajamas. Katie was yelling at Carlie that she was a bad dog for knocking over Sadie. Sadie was howling.

I went over to pick up Sadie and to scold Katie - first for getting her sister out of her crib (a no-no) and second for taking her outdoors without permission while mommy and daddy slept (a not-previously explained no-no, but a common sense no-no). While lecturing Katie, I noticed a smell. And that Sadie's butt was soaked. And that the smell was overpowering, and worse by the second. I pulled out the full trash bag from our kitchen can, ready to stick the soon-to-be discarded diaper in it and took Sadie to the changing table. She was covered in poo - not solid, not cute, but the nasty, sticky, diarrhea type of stuff. Those who are eating while reading this may want to stop now.

As I mopped up Sadie and gagged profusely, I failed to hear the rustling coming from the kitchen area. I'd also forgotten about the strange cat in our home. I was intent on hazmat removal of toxic substances. I finished with the diaper duty to discover that underneath it all, Sadie had the worst diaper rash. Ever. She howled as I tried to wipe her, and screamed when I put Desitin on. Great.

I wrapped up the diaper in the first of many bags to dispose of and took it to the kitchen. Only to discover that the dogs had pulled out aforementioned trashbag and had strewn the contents all across my carpet in the living room. Yes, that carpet that I'd spent two hours the night before steam cleaning. That's the one.

As I picked up trash, I discovered another surprise. A mostly-melted popsicle (bright red and purple) sitting on our entertainment center, dripping steadily on... you guessed it... the freshly cleaned carpet. Oh joyous day.

I knew Sadie wasn't feeling great, but decided it was still a great day to go to Grandma's for some babysitting. So I struggled to get everyone in the car, to my mom's and back. Coming back, I opened the door only to be almost bowled over by one freaked- out cat that did not belong to me. He shot out that door like lightening - no doubt due to the smell emanating from our no-longer-fresh-scented home. I broke out the Lysol, stripped Sadie's room, re-steam-cleaned, lit every candle I owned and, for good measure, brewed some coffee to help offset the overwhelming aromas floating about our home. My employee later went in to use the restroom, and noted how fresh it smelled in our home. Hah.

I need to install some new locks. At first I thought about keyed locks that have the keyhole on both sides. Then I realized that that would be a serious fire hazard. So then I thought a chain lock would do it, then I realized that Katie would just stand on a chair and open it. And if Katie does that now, who knows what her rebel-rouser sister will do in a year or two.

I asked Katie tonight when I put her to bed how long they'd played outside this morning. (I'd asked her the same thing this morning during the "lecture" and she said just a few minutes). She informed me that it wasn't that long... they had waited for the sun to come up first.

I told a few people this story today, and I got the usual, "You'll miss these days when they get older." Actually, no I won't. I may miss the age, or the giggles, cuddles and laughs, but I will NOT miss the diarrhea-filled, strange-cat laden, floor-ruining, heart-stopping days like this. Not. At. All.

Sisters

Hangin' out in a toy bin on a typical Thursday morning around 6 am. All the toys had been taken from the bin and littered through the living room already. You will note some sort of orange substance on Sadie's face and PJs if you look close enough. And Katie's stopped talking only long enough to smile for the camera. The nonstop litany of 5-year-old conversation started the second the flash was gone. And fighting quickly ensued.

But they did look like adorable little angels together for a moment.

Good Report from the Cardiologist!

Yay - finally some good news to report! Sadie had her cardiology appointment today, which we'd been dreading/anticipating anxiously the last couple of weeks since her poor x-ray and pulse ox incidents. It looks like her pulse ox levels were down to some sort of respiratory infection or other ailment, but not because of her heart.

According to the cardiologist, her coronary arteries look great, there's only mild stenosis of the pulmonary vein (to be expected - will have to be watched and may one day require a stent, but for now is a-ok) and her right ventricle pressures look very good (her right ventricle has to be in good shape as with her condition it is responsible for the normal left-ventricle function). These are the three key things to watch with TGA patients as they develop, and all three areas look good. Even better news... there is no sign of pulmonary hypertension any longer. He said it's quite normal for it to abate after surgery and ample time to heal. Hooray!

He also said her pulse ox will run mid-90s frequently, and it's nothing to be concerned about. I had been incorrectly told at UVA that she'd be 99-100, and it simply isn't true. Especially when she's congested, has a chest cold, etc. She was running 96 today, which he was perfectly fine with . If it gets down in the 80s, then we need to double check, otherwise, she's good to go for another year before she needs another echocardiogram.

I also had an opportunity to talk to him a bit about my feelings, recent findings and insurance issues with UVA, which has been a sore spot for me since it was he who told me the only place to send Sadie was UVA. He explained his reasoning, and I agreed we made the right choice for Sadie, but implored him to respect his patients enough to give them options and explain risks more clearly. Though it is a time of shock and stress, often, when he meets with them, I still feel it's essential to have all the information in front of you so that you can make the best decision for your child. He was very kind, agreed to give more consideration to this and thanked me for my frankness. Good guy.

It's amazing to me every time Sadie's had an echo to see that little heart pumping, it's valves moving, the blood flowing. It reminds me of how far we have come since the day she was born, and what a miracle she is. It reminds me of how lucky we are to have her screaming, hysterical little self as part of our family. And it reminds me of all the people who came together to save this one little life. There I go getting a little weepy...

Enough... we're off to the park to celebrate!!

Mixed Bag

Sooo... lots happening, and this is more for family and friends that care to read it, so feel free to skip this post if you aren't interested in our mundane daily life.

Sadie
Took her in again Friday, still running low grade fever. Was diagnosed with (sigh) an ear infection. Isn't that why I went in the first place? This time her pulse ox was 99, where it should be. She's very congested, so perhaps that's something to do with it. To clarify everything we're going to her cardiologist Friday. Hopefully we can get some answers and (cross your fingers) a clean report.

The Harlie Fundraiser
I'm happy to report that the total raised was $56,000!!! Thanks to all of you who sponsored my run or donated and to you guys who went the extra mile and did some fundraising yourselves. Big props to my sister-in-law Kim for her Kaiser group, Jamie and the Ashland Jaycees and my friend Jen in sunny CA for going the extra mile to get donations. (Not that I wasn't touched by everyone who gave - your gifts were incredibly generous!). Harlie seemed to enjoy the occasion, and I know her parents are very, very happy, grateful and relieved. She's gearing up for a Nissen surgery later this month, and jaw surgery in June, so keep her in your thoughts/prayers.

My First 10K
In context with the Harlie fundraiser, I ran my first 10K. I did not train before hand, and I really, really wish I had. I meant to, just didn't quite get there. I managed to get through in 1 hr 22 min, and was disappointed that I hadn't pushed myself earlier on. I stopped and walked around half a mile in mile 2, and I think I could have made it without stopping in hindsight. I'd just never run 10k before, so I had no clue how my body would handle the later miles. Turns out that this fat butt still likes to run, and once I got going again in mile 3 at a good pace, I was ok. Slow, but jogging. I was pumped up by the time I crossed the line, and kind of got teary just knowing that I'd done something I'd never done before... on my own. Next year I hope to recruit a few to run with me. In the meantime, I'm thinking I should get back into running and try the 5k next month. I'd forgotten how much I enjoy long runs. Thanks to Amanda for letting me snag your bib. Hope you feel better soon and can get back to running.

Insurance, Insurance, Insurance!!!!
SADIE IS INSURED AGAIN! After months of being uninsured (and previous months on only a "supplemental" plan), we finally found a company to insure her! I won't say who it is, because I don't want to jinx it (they clearly coded her wrong in their system, but I'm not saying a WORD!). But we're covered, and covered pretty well in terms of insurance options available. A recorded message called Thursday with the news and I cried. Seriously. There's a first - crying over a pre-recorded phone message. I'm becoming a total sap these days. It's just in time, as we have to get Sadie into the cardiologist next week, which isn't cheap.

The agent who worked so diligently to find insurance we could afford and that would accept Sadie is Tammy White. I'm putting in a shameless plug here for her - she went 10,000 miles beyond the call of duty to help us out. She also has a child with a CHD. If you've been screwed by insurance like we have, I highly recommend her:

Tammy White
Vice President/Benefits Specialist
Chas. Lunsford Sons & Associates
800-777-5773

I'd be remiss not to say here that I owe not only our insurance solution, but also the balance billing removal to a local "heart" mom and friend, Christy Davis, who is the co-coordinator of Mended Little Hearts here in central VA. She's given me advise that has literally saved our family from financial ruin, and I can't thank her enough. Christy, I owe you... BIG time!! Thank you, thank you.

I have more, but will save for later dates, as some (such as the Sadie's heart tissue donor) take much longer to tell. Thanks for checking in!

The Operation Sadie Had

OK, two posts in one night, moments apart. But I just came across this on a fellow CHD mom's blog and had to post. This is the surgery Sadie had in order to survive. Hers was not as simple as the Arterial Switch Sadie underwent, as in addition to TGA she also had two holes in her heart (ASD and VSD) to repair, plus complications with lung issues before and after.

Warning: NOT for the faint of heart, the squeamish or those that freak out over surgery videos (That means you, Mom!). This is graphic.

Tough Day

Sadie went in to the doctor today for what I thought was yet another ear infection. The ear was red, but not bad, but what was not good was her chest. It turns out her 02 Sats are lower than they should be (highest they got was 95) and her chest sounded icky, so we were sent to the hospital immediately for an Xray to see if it's pneumonia or something having to do with her history of pulmonary hypertension or heart. Good news (I guess?) is that it's not pneumonia. Bad news is that we don't know what it is. The doctor called me a few hours later and said that we should get the xrays to her pulmonologist (which we don't have and I only recently found out we should be seeing) and cardiologist. It was after hours, so I have to call the cardiologist tomorrow to see what's up. I don't know if this is a "big" thing or not, as the pediatrician's voice mail told us that "nothing specific turned up, but you should follow up". Does that mean there's something? The pessimist in me says yes, as she wants us to see someone else (specialist). The calm attitude about it all with the underlying urgency is alarming, and my bells are going off all over the place.

Sadie's had a couple of spells in the last two months where her lips turned blue, but always when she was cold, so I wasn't too worried. Then, recently she's been panting a lot, but I chalked it up to allergies, which she appears to have (stuffy nose, sneezing, itchy eyes). Now this. Hopefully it's nothing, but I am anxious to get to a specialist. I've discovered through the whole CHD awareness campaign stuff that our care and follow-up post-surgery has been less than adequate through UVA, and I plan to address that and get some answers to the current issues. I just hope and pray it's not a leaky valve, stenosis, or whatever the "maybes" are. None of them sound nice. I'm crossing my fingers for this to be a serious case of over-zealous pediatrician. Please cross yours too.

Katie, as always, was a little champ about it all today. I could tell it was bothering her because she kind of clammed up at the xrays and after. Tonight we talked for quite a while (while dressed in our finest princess apparel) and she told me she was scared and didn't want Sadie to be sick or go to the hospital. We talked about it, and I think she's ok, but she's one serious (and insightful) little girl and takes in more than I know I even realize.

Speaking of Katie, I have a scene from our daily life to share...

"MOTIVATION"

Setting: on the floor in her bedroom, playing Barbies. One of hers is pregnant.
Katie: My Barbie is fat. She is having a baby.
Me: Katie, it's not nice to say someone is fat when they are pregnant. Having a baby inside you is very special, and the baby makes your tummy big because he or she needs room to grow. It's a miracle, and you should never make a pregnant mommy feel bad by saying they look fat.
Katie: Mommy, I'd never say you are fat. You don't have a fat tummy.
Me (knowing she is lying on the tummy part, but pleasantly thankful for her sweet reply): Thank you, sweetie.
Katie: I'd just say your tummy is HUGE.
My exit stage left, as I go to look up Weight Watchers online. Again.

Out of the mouths of babes... (ugh!!)

Post Pascha Prilosec Please

Ugh... pass some relief this way, please. The girls had a fantastic time this Easter, but this momma could crawl into bed and sleep for a year. Who the heck was it that decided plastic eggs and candy should be a part of this day's festivities? Clearly, not a parent.

The morning started with Katie awaking at 5:20 to follow a trail of glittery confetti and eggs that led her to the ultimate payout - Easter basket complete with a new Webkinz and Hannah Montana CD (yes, I am a glutton for punishment, thank you for noticing). She managed to keep things quiet for a little over an hour before waking her sister, who discovered her basket. Sadie proceeded to bite through Hershey kisses wrappers, and when Jason put the basket out of her reach, found a way to get to it, grab candy and then run like all heck to a quiet spot where she could imbibe. Around noon we headed to the Thies clan's homestead in NoVa, where five cousins hunted for 149 more eggs . The ride home was one that even Satan couldn't come close to imagining up as the ultimate punishment in the depths of his fiery kingdom. Two candy-cracked out kids, two irritable parents and an insane lack of sleep led to the best case of heartburn I've ever had. Screaming, kicking (some of it the kids' doing), loud music and a 5-year-old with diarrhea of the mouth, it was one of the longest 1.5 hours of my life. Finally, they are in bed.

Now to hide all the candy they got today, to be given out in small increments over the next, say, three years. I'm sure there's enough that if it were one piece a day we could do that, with a few pieces left over.

Onwards and upwards. I did manage to get out to the office for some quiet moments (now), and read a blog entry in one of the many I keep up with that I'd like to share from AuspicousJot...

To me - resurrection is about the slow invisible pulse of life that flows in our seasons and quickens in Spring.

Resurrection is when you think you can never love again; when your heart is so broken that you let it die instead of trying to heal. When there are years of cold in your heart. And then... and then... you meet someone and you feel it again. The early pangs, the budding, and the full aromatic blossoming of a heart bursting with love. Resurrection.

Resurrection is people who live in the dark and endless tunnels of depression who see a glimmer of light and have the courage and the stamina to start running for it. And the darkness is so much more than that little flicker of light, but they run and run and run.

Resurrection is a hope that more people will resist taking up arms and instead hold hands with strangers. Cities will be rebuilt. Wounds will heal. Peace will be learned and taught.

Resurrection is every person in recovery working the program, going to the meetings, being clean today. Resurrection is starting all over again tomorrow.

Resurrection is apologizing, forgiving, learning from your mistakes, not dwelling on the mistakes of others.

Resurrection is trust, hope, faith, and awe.

Resurrection is leaving a little bit of room in your life for the impossible to take root and become possible.

Resurrection.

Beautifully written. I needed a bit of food for the soul, and this left me with a warm and fuzzy feeling about a beautiful day, and its true meaning. Rock on with your chocolate bunnies, kiddies. Momma's back in the game.

Last Day!!!

It's the last day of my mega-blog-a-thon and I can not be more relieved. I learned a lot through this experience (shared on the learnaboutchd blog if you're interested), but most of all I learned what great family and friends I have that have undertaken this campaign with me. I really appreciate all of you who posted logos, referenced websites, sent encouraging emails, called, etc. I can't tell you how much it means.

This is just the beginning for me, though I won't be quite so intense about the entire effort (I don't have the energy!). I really feel that CHD awareness is vitally important to tomorrow's unborn children, to our children who have CHD and will soon be adults without experienced medical care available for their special hearts and for moms around the world. I hope you'll join me in these efforts!

Here at home, I'm finally starting to recover. I ate solids and kept them down! Hooray. It's the little things, right?!

Sadie has been in rare form all day. She's learned to climb on top of the coffee table, on the backs of the couches, throwing fits, biting the heck out of me (anyone have suggestions on that particularly lovely behavioral issue?), tore open a package of pretzels stolen from the cabinet, crunching them and spreading them into the carpet, pulled the cat's tail (multiple times), sat on Carly Sparkles (clucking like she was riding a horse) and that's just what happened before noon... she wears me out.

Thank God for her mended heart. How boring and pale life would be without her!

Flu.

Need I say more?!

I woke up Saturday morning in Boston with my throat raw at 4:00 a.m. I figured it was from playing outside in the snow the night before with only a light jacket on (totally didn't pack right for Boston), so drugged myself with ibuprofen and coffee and headed to the mall for last minute souvenirs. Shortly thereafter, the rest of the flu bug made itself known.

The flight home was uneventful (thankfully) and the kids and the rest of the zoo at our house were most welcoming. I however, just wanted to curl upstairs for some shuteye. Not happening.

Fast forward to today... been battling a 101 temp all day, chills, angry throat, angrier bowels and a raging headache. Katie was great all day - played on her own often, and tried to entertain Sadie from time to time. Sadie, on the other hand, is a teething banshee who was not having anything to do with anything I wanted her to do today.

Whatever happened to sick days?!

From My Sister...

My sister Kerinda wrote this, and I wanted to share a portion here. Thanks, Kerinda, for sharing the experience from your perspective!

I entered this world as Kim's 9lb 1oz, broken collared, colicky screaming little sister. Life for us began in a very different way, and I’m told that I made it my mission to make sure everyone around me knew that it was different and exactly what I thought about it. We grew and before I could blink, she was getting married and starting a life of her own. I was soon flew the nest and was out on my own when I was 19. At 20, I became an aunt. Being single and very naïve, I was amazed at the miracle of birth, the tiny life that I held in my arms, and the absolute wonder of my infant niece Katie. She was gorgeous. She was so cute, little and incredibly snugly. I blinked again and she was 2, another blink and she was 3. I was so lucky to live near by and hardly miss a day and I didn’t think a more perfect child existed.

Then Sadie arrived. It was the scariest phone call I ever received, fearing for not only my sister- my soul- but more so for her baby. It was so fast, all the phone calls, not being able to leave and go to the hospital when I wanted, updates not soon enough, constantly worried, I couldn’t seem to calm down.

When I finally got to the hospital, my heart sank to the center of the earth at the sight of her. Cords looked to be thrown on top of her like snakes on Medusa’s head; they were everywhere. There wasn’t a spot on her that didn’t have a tube, a band aid or a monitoring patch. My sister looked fatigued but somehow determined; more so than I had ever seen any human being. I felt so angry, scared and mostly confused as to what was actually happening.

Then there was the night I got to stay with her alone. Weeks into this nightmare, my sister and brother-in-law were exhausted and desperately needed a break, and it was their Katie's 4th birthday. I felt my heart leap when they asked ME to stay for the night.

The first few hours were okay. I watched the nurses come in and out, checking monitors, fidgeting with tubes, squeezing bags, and fuss over the amount of hair this baby had. I tried to memorize everything in the room and read each monitor and guess at its function- but I couldn’t keep my eyes off of Sadie too long. Every breath brought hope. Every delayed breath brought irrational fear.

Late into the evening, an IV had slipped out of one of her hair-width veins and formed a huge, fluid-filled blister. God I was mad. How did this happen? It’s not like she’s moving all around to have this “pop” out- she was pretty much comatose. Where’s the nurse!? Where’s the nurse that initially put this in to begin with? Lights flooded the room, machines started beeping louder and louder and there seemed to be a sea of white jackets in a 10x10 foot room. Then came the most terrifying noise I’ve ever heard. A long constant steady beep.

The next sound was silence.Every pore on my body seemed to be on fire. My eyes were dry from not blinking. This was a dream or I, myself, had died and this was hell or purgatory or something worse.

Sadie's screams broke the silence and I realized that no silence had ever taken place and I had unknowingly blocked any noise I heard after that one, steady, long beep. She was breathing. The nurses were still trying to “find a vein.” I got annoyed and wanted to intercept and help so badly. Three of the nurses left and there were three continued to hover.

Getting the nerve to look down- expecting to see something completely alien to my eyes, I saw Sadie was red and blue with rage. She was kicking and fighting them so hard. How this little baby, on all those drugs, was capable of even crying was beyond my knowledge. Two nurses were having to holding her down. It seemed so savage. In shock, I found a pacifier and touched her sweat-soaked head and began to talk to her. I told her how proud I was of her, how I would always look to her as my strength, my hope and would look fear in the face- just as she was then. But I was still getting so upset and I was desperate trying hold back my emotions to keep my voice strong and steady.

Two of the nurses had been switching places from holding to “finding” and both were overcome by this seemingly endless search. They stopped for a second, and I kept talking. She seemed to be calming down. At least she wasn’t purple with rage at the moment.

The IV still had to be put in. The inside of her tiny thighs, the top and bottom of her feet had been stabbed endlessly without luck. It looked like she was getting used to the pain.... and I finally started to freak out a little. The nurses were frantically looking at the monitors and I could see from their expressions that it was crucial to have this needle find a vein.

Then I heard them say that they wanted me to help. ME. I was asked to help hold her down, keeping her pacifier in her mouth and her arm from knocking out a different, perilous looking IV. Having lost track of the number of times they stabbed her before, I started the count again.
Three pokes later, the room began to calm and the drone of the steady beeps were welcomed again.

I felt ill but didn’t allow the thought to remain in my head for long. I had no complaints to bring to the table. In fact, I didn’t have a single thing in my entire life remotely comparable even to the last 30 minutes Sadie had fought through.

The rest of the evening was mostly, thankfully, uneventful. I couldn’t stop staring at her, watching her freshly cut skin beat from the thump of her determined heart.

Days later she went home and the drug withdrawals came along for the ride. The rest of the family was settling in, but exhausted. Screaming filled their heads, their house, their cul-de-sac and what seemed to be all of Central Virginia. Day in and day out there seemed to be no rest for Sadie's family. Swaddling and rocking and bouncing were what occasionally settled the savage beast-child. Dark circles found the best place to reside and quickly settled onto three faces. Katie was tired, somewhat jealous, but mainly the greatest big sister. She’d get close to Sadie in her swing and tell her it’s was ok, and how much she loved her. Kim and Jason were overcome with exhaustion and work-related stress. I tried to offer my help and the one or two nights that I relieved them, I was shocked how Kim, Jason and Katie had adapted and adjusted to that sort of hectic lifestyle. Weeks later the withdrawals subsided and Sadie's personality emerged.

Now Sadie is into EVERYTHING. I my job at an optometrist's office and started work for Kim’s business, and was around the girls every day. Katie is growing like a wild fire and Sadie’s scream has become a well practiced, banshee-like siren noise. It's great. I can’t turn my back for 10 seconds. No- I seriously, literally mean 10 seconds. Crawling was fun... but then the walking thing happened (UGH). And if that wasn’t fun enough, teeth grew into the fun zone. Yea! Of course it couldn’t be one at a time, but 1000 at a time instead!

As they grow, so do their personalities. Goodie for me – I have Katie, who wants constant attention, but even better that I have Sadie biting me and shoving Katie to have me to her self. She makes it very clear that I am her beef jerky and NOT Katie’s. It’s an endless war.

Everyday I spend time with the kids, and everyday I learn something new. Sadie is a spit fire. If I wasn’t in love with her Tin Man “icon,” that we've chosen to represent her, I’d somehow incorporate spit and fire into the next tattoo I get.

Katie is a total mush-ball. It’s hilarious to watch her freak out and “awwww” over a dead moth. But her in-tune nature makes me daydream that she will become a veterinarian. We all have decided that Sadie will be some sort of extreme sport junkie, as she loves to play "stick the hand in the pitbull/German-shepard’s mouth" and stand on chairs. (Wise investment Kim and Jason… “but noooo, Katie wanted a puppy”!!)

It’s a never ending, extravagantly fun, fast paced house hold. Need a heart attack? Come on by for a visit!

I took the Katie and Sadie to the Dollar Store recently to buy a ton of crap that Kim will later scold and swear me for. Then I took them to the park, only for Sadie to immediately pick up handfuls of mulch and offer them to anyone within toddling distance. Katie found a friend in about .00000019 seconds and I had to laugh at them needing to scream- just because. When it was time to leave and I was putting Sadie into her car seat when she decided that “anytime’s a great time to throw a fit.” Full-fledged, screaming tantrum. Not being the Mom, I don’t smack, but often have a little “Kerinda-devil” pop onto my left shoulder and say “Go ahead, one little POP on the butt would do her good. I won’t tell!” Instead I simply smile and look at her and say “Aren’t you glad that you’re not MY kid?”

I got them home and made a bottle for Sadie to go down for a nap. She threw herself on the floor beside me, screaming, then pulled at my jeans and found the right spot to bite as she decided that I wasn’t paying enough attention to her. *Ouch.* I finally got her into the rocking chair with a bottle. Katie ran into Sadie’s room just to tell me that she loved me. She left the room and Sadie and I settled again.

Before Sadie took the bottle, she looked at me and said “Ni-nah,” her name for me. I thought to my self that I was so lucky to live near by and hardly miss a day and I didn’t think a more perfect child existed.

General Update

I'm wiped out from work today... leave for Boston on Monday and have miles to go. So, today's blog is posted on the CHD awareness site. Check out Makenzy's story - she's 8, and has a sister who has CHD. Her story is very touching, and one many kids can relate to. I'll write something soon about Katie's general reactions as well, but don't have the time/desire tonight.

On the home front, I took Sadie in for what I thought was a simple ear infection today. It's not. Looks like there's something going on behind the ear drum. We're going to watch it and see what happens over the next week or so, but the dr suspects the ear drum may burst because of the pressure. Basically (gross... weak of stomach skip this), there's a lot of puss built up behind the drum, as well as tissue. The pediatrician thinks it may be another genetic anomaly that is the root of this (the tissue malformation). No one has ever mentioned it before, in the 3 times in the last 4 months we've been treated for ear infections.

Interestingly enough, he said I should sue my OB. I won't be, but it was reassuring for another doctor to tell me that I was neglected, my desire for more information was denied, and that it wasn't right. No other doctor I've talked to will admit that. We had a half hour discussion about the failure to be able to obtain insurance for Sadie, and his comments included how broken our health care system is, and how CHD is so severely overlooked - there's no "money" in it, and the children aren't old enough to vote on issues, parents overwhelmed. It was comforting to find a doctor who feels exactly as I do on the politics of healthcare, the state of the American health system and CHD awareness in general.

Anyway, the Sadie issue is wait and watch. He said tubes are likely, but that they couldn't be done right now based on what he saw. He also said he hopes and doesn't think it will affect her earing. He also mentioned it could have a lot to do with her behavioral issues as well.

Katie had an awesome day. She came home with 40 valentines from her friends, which we had to go through individually tonight. She's bouncing off the walls on a sugar high like I've never seen before. Gotta LOVE it when preschools serve sugar before sending kids home. Thanks.

Happy Heart Day!

Hooray!!! Today is the last day for lists of 7!! Please check out my friend Christy's post on the LearnAboutCHD blog - it was awesome of her to take the time to write it!

I hope everyone had a super Heart Day. I've never been one for the holiday myself, but it took on new meaning this year as I set out on the marathon CHD awareness campaign. So, for my final personal list of 7, I'd like to share what I've learned this past week as I've embarked on this adventure:

1. I'm surrounded by love. Up to my ears in it. And it feels GREAT! I have received so many phone calls, emails, shout outs and woop-woops from friends and fellow CHD parents. Everyone should do this once a year just for the warm fuzzies you get from realizing that other people care!
2. I'm lucky to have a kid with CHD. Don't get me wrong. I hate that Sadie had it, and would not wish it on anyone. But because she did, my eyes have been opened to a need I had no clue existed.
   
3. Any schmo can make a difference. I managed 400 unique hits yesterday on the LearnAboutCHD blog - something I started on a whim because I couldn't really find anything that brought the information together in one place without begging for money. Who'd have thunk it would take off like that. If I can do this little bit, then imagine what a devoted organization or company could do.
   
4. I have awesome family and friends. You know who you are. Jumped right in and started campaigning beside me, whether posting something on your MySpace page or blogging along side, thank you!!
5. Lists of 7 are NOT the way to go next year. Too much work. But I did like the shiny logo. Sparkly.
6. Sharing Sadie's story is OK to do. Honestly, I was a bit ashamed, embarrassed, and emotional about the whole Sadie heart experience. I shouldn't have been. I couldn't do a thing to prevent it. I just didn't want people to see us as "different." I didn't want them to treat her differently. So I simply didn't talk about it much, except with my closest friends and family.But I feel so much better now that I know there are hundreds of other moms out there, just like me, who feel the same way at some point and time.
   
7. Sadie is a rock star. At first I was worried about drawing attention to her. But she loves to check out her newspaper mug we stuck up on the fridge last week, and has proven she's a total diva in progress.

7 For 7: How CHD Changed My Life

Before I go into the 7 for 7 for today, please keep up prayers, positive energy, or whatever you can muster for baby Claire, who was sent to the hospital earlier this week with what they thought was RSV. It turns out that it's not RSV, it's much more serious, and she's having a very tough time right now. Please think of their family tonight!!

I can't believe I just posted this on the "public" blog, but I did. After talking to lots of moms all over the country in the last year, I've found out that I'm not alone. In fact, I found out that I'm not unique at all in these 7 things - they are the norm when it comes to coping with a life-threatening illness with your child.

1. Realizing What a Gift Life Is. The miracle of life is more poignant than ever before. As an emotionally-reserved kind of person, I'm amazed at the overwhelming emotions I have when it comes to babies. I cry in part out of joy, in part out of longing for those moments that were lost with my daughter, part in sadness over the babies I know that were lost, and mostly over the miracle that I see. Life, simply, has so much more meaning to me.
   
2. My "Uninsurable" One. I've unfortunately learned the hard way what the real status of health care in America is, and it infuriates, sickens and saddens me simultaneously. When Sadie was first born and crisis hit, we were left with several six-digit "balance" billings that took over 213 hours to get down to manageable sums. Sadie has now been deemed "uninsurable" by every health insurance provider in Virginia. We're hoping she can get medicaid since everyone has denied her, despite the fact that we make too much to qualify according to state laws (ironically, we'd be much better off insurance-wise if we were on welfare at the moment).
   
3. Learning to Let it Be. With Katie, I spent hours upon hours in instructive play, devouring educational theory and incorporating it into every day life. When Sadie came along and had a "defect," I was even more determined to do the same to keep her at or ahead of the milestone charts. Instead, Sadie has taught me to step back and enjoy her milestones as she reaches them at her own pace. Her unique personality and the obstacles she's overcome have made me stop and relax and enjoy those moments of play for the sake of play, snuggling without talking, and letting the house go to hell in a handbasket while we chase each other in circles.
4. Financial Challenges. I have avoided this post like the plague, but after talking to families of all "status" levels with CHD kids, I feel like I can now share this. Frankly, have felt ashamed at the toll the entire experience has taken upon our family's finances. Like I should have somehow been prepared, or been able to avoid the impact it's had. The co-insurance costs, counter billing, medication, doctor and specialist co-pays, loss of income from extra time off of work, extra child care... the list goes on and on. It's incredibly hard to put myself out there and admit that it's taken a huge toll on our finances. That being said we are lucky - we've taken a hit, but we're surviving. I've met other families have lost everything they own in their fight for their child's life. It's enough to make me run to Canada and wave the socialist flag.
   
5. Learning How Tough Marriage Can Be. I can't even begin to describe to you what it's been like for Jason and I this past year. Some of you know about it, some of you don't, but let's suffice it to say we've definitely had our ups and downs in our 12 years of marriage. But nothing can put a strain on a relationship like having a child in critical condition. You feel closer, yet more alienated from eachother. Your full attention goes to your child's survival (and, in our case, in worrying about the impact on Katie as well), and you lose a lot of yourself and almost all of your relationship in it. Having a partner beside you going through the same thing, but with differing ways of handling things (because none of us are truly alike in how we deal with stress and grief!) is both wonderful and incredibly hard.
   
6. Smiling at Tantrums. I used to roll my eyes at parents in stores that had tantruming children, thinking how my child would never behave that way thanks to my parenting prowess. Someone upstairs wanted to take me off my high-horse, and did so with my second child, who has CHD. As I've mentioned once or twice, Sadie has some insanely intense tantrums, which worry me (developmentally) but also reassure me. I'm thankful her heart is strong enough to support them. I'm thankful I get to hear her voice. Most of all, I am thankful for her life. Now I'm the one being glared at, and though I'm embarrassed and ready to run from the store, I can always find a smile at the know-it-all, because he or she has no idea that this screaming banshee in my grocery cart is the ultimate survivor.
7. A New Perspective. My friend Christy, mom to Sydney (see the 7 faces entry 2 days earlier), wrote, "Having a child with CHD had totally changed my prespective in life. I do not sweat the small stuff like I used to. I have learned to cherish the moments with my children. For the smiles...drools....tears....temper tantrums....arguments....laughs....for their strength....courage.... and most of all, for how much they teach me about life and unconditional love." Well said, Christy, and ditto to that!!

Feisty

One of the things I've heard since the moment Sadie was born is that she's feisty. And I've always agreed. The child came out of the womb screaming, and screamed until the moment she was intubated, even though it was difficult, given her condition. The first time I held her she cried as loudly as she could (which wasn't that loud, as she'd just had the breathing tube removed). During the first months of withdrawal from the medications she had, she screamed. In the middle of the night she often wakes and screams. At the grocery store, at birthday parties, in the library, in the car... (you may get where I'm going here)... she screams.

Tonight she threw one of her infamous fits as I took her out of the tub (from which she and her sister had emptied an entire bottle of baby wash and were trying to create bubbles by swishing around like crazy). As I was trying to keep her on my lap while she kicked and squirmed, I saw her scar, remembered I needed to write a blog tonight, and also, felt incredibly grateful for her screams. For a few minutes at least.

It's tough having a child like Sadie that has such a "challenging disposition." But at the same time, her screams are a reassurance to me. I often laugh to myself thinking of how desperate I was to hear her cries for the first time after surgery. Though it doesn't seem like it when I'm at wits end after a day of 10-12 tantrums, I am happy that her heart is strong enough to support her feisty spirit. Heaven knows that that poor little organ must work incredibly hard.

Christmas Photos

Yeah, they're gorgeous. And full of it.

Best of the Holidays

It's been another whirlwind month, and I haven't had a second to sit back and update the blog in days. I hope all of you out there have had a very merry Christmas!

Despite the kids continuing to share sicknesses (Sadie's turn right now, Katie's was last week), we've managed to have a great time getting ready for the mack-daddy of all children's holidays. Here are my top highlights:

• The look of wonder on Katie's face as the curtain went up for the opening scenes of the Nutcracker. This is the first year we've taken her, and she was drawn into the show from the first notes. She didn't sleep or complain once (which is pretty impressive for a 5-year old). She sat with a look of wonder mingled with pure joy as the scenes changed, dancers flowed across the stage and the orchestra played. Shame on me for not introducing her to live arts earlier. I've decided that we'll be hitting some classical concerts, dances and theater several times in '08.
• Sadie and the "Christmas balls." She loved the glass balls on the Christmas "Flower" (she refused to call it a tree). She would carefully remove them and feed them to Carly Sparkles the Pitbull Pup, who daintily chewed and spewed glass shards throughout the living room on multiple occasions. At least twice I emptied her doggy bed chock full of glass. Not once did I see a cut on her mouth, nor in Sadie's bare feet. Truly a Christmas miracle.
• Katie's Christmas tree. Katie got her own tree in her room this year - bright pink and "bling"ed out to the max. She rearranged the decorations often and took great pride in her additional decor (hand-painted items she made, garish garland draped over her windows, etc.).
• Presents for the kids. We spent way too much this year. I admit it. But the good news is taht according to American media, we did our part for the economy. Katie got a (I know, I know, reliving my childhood wishes) Barbie Cadillac Escalade power wheels. She buckled Sadie in and tore up our yard all morning. It came with a built-in radio, and reverse features. She'd back it up to her play set and swing to the good songs that came on. Sadie got a Dora kitchen, complete with 44 bilingual phrases. Maybe she'll stay out of my cabinets now (haha). She is having a blast with all the noises, and taking things in and out and "feeding" us gourmet toddler meals.
• A "real" kitchen. Yep - we now have working appliances once again! I can wash dishes in a dishwasher, heat things in the microwave, cook on the stove and (gasp) the water filter in the fridge actually dispenses water. While replacing the appliances, we had the brilliant idea of sanding and restaining all the cabinets, replacing their hardware, tearing up the hideous tile and placing new flooring. My kitchen is pretty now. Yay. And it works. Bigger yay.
• Hark the Herald. Katie learned every word of it. I'm going to try to get it on video tomorrow and will post it. She sings it with such earnesty and sincerity. It's hilarious.
• Dancing. Sadie learned to dance this past week, to Christmas music. Again, an item that must be uploaded on video. It's something between steppin' and an Irish jig, baby style. The kid has talent.
  

From the Thies household to yours, I hope you, too, had a merry Christmas!