Poo!

That's "Two!" if you're Clara. All day long, you can hear "poo pumpkins!", "poo balls!", "poo oranges!" at our house. It doesn't matter how many of said items are actually there, it's always poo. So stinkin' cute.
(That's right, I'm just jumping in like I haven't been absentee for 18 months. Good friends can do that)

We've been busy with new jobs, moving in with my parents while we build a new house, pre-pre-preschool, family vacations and playing hard.
Today we had an evaluation with Early Intervention to see if Clara can get in to pre-preschool before she's 3, when they'll test her to see if she qualifies for preschool. And, well, she might not. She's behind in her speech and "self-help" (dressing and feeding herself), so her quest for early emancipation is hitting a roadblock. But in all the other skills, like social and motor skills, she is at or ahead of schedule. So we'll be having speech and occupational therapy come in to work with her for a while, but her current specialist thinks there is a good chance she won't qualify for the preschool run by the district for developmentally delayed kids. She's catching up so fast, I can't believe how quickly she learned to mimic the naughty words Uncle Nate teaches her!
She'll also head to cardiology on Monday for her next checkup. We have had to visit the cath lab once this year to have the stents in her pulmonary arteries ballooned, and a few sedated echos, but all is well there also. She has so much energy and has been very healthy, minus a month of ear infections and HFM earlier this year.

 We have also been lucky to take Clara to a lot of fun places this year-with family, with HopeKids and some just for fun. We always love our annual trip to St. George with the Wallaces for Spring Break and Clara got to go on her first plane ride to visit the Forbes (and Fuller!) family in Minnesota. Since I've never been a great lover of pets, we made up for it by going to the zoo, the aquarium, and even a reptile show this summer!
(Just now, Clara climbed in to my lap, saw two pictures of her and yelled "poo Claras!")
We hope to be moving in to a new house in Herriman next month and we couldn't be more excited or feel more blessed for the help from our family in making this happen. We have found a neighborhood we're excited to join, there are families with kids for Clara to play with, good schools, and we can't wait to put down some new roots there.

Half a Million Minutes: A Summary

Our girl turns 1 today, and the last few days have, of course, been full of 'remember whens.' In her first 525,000 minutes (give or take a few), there have been a lot of memorable ones...

  

• The 380,000 minutes I was pregnant with her.
• 2880 minutes-That's how long our family and friends were in the waiting room...waiting.
• The 15 minutes we got to see her (after the 120 we waited after the c section) before she was transferred to Primary.
• The .0005 minutes it took her to realize she would not be swaddled
• The 10 minutes I got to hold her when she was 2 days old, even with a crowd of specialists on hand to keep her tubes connected and everything stable
• The 15 minutes (x a billion beloved family members) that each of our family members got to see her before surgery.
• The 30 minutes we spent as a little family before handing her off to the surgeons. It was precious and scary and the most blessed I've ever felt.
• 720 minutes-our first sleepover took place in the CSU room she was moved to after she began to recover. There was not much sleeping, by either of us.
• The 60 minute windows of time where Nana would babysit while Todd and I 'escaped' to the grocery store. We were supposed to be gone hours, go relax, but were too scared to be gone that long.
• The 3000+ minutes it took us to figure out her incision was infected and get her readmitted (this does not include the 3 minutes where I was ready to knee-cap the surgeon who was cutting her incision to check it. In an exam room. With scissors. And no anesthesia.)
• The 9 minute naps Clara used to take on her dad's tummy.
• The .0005 minutes she realized that, along with swaddling, clothing should be optional. Especially socks.
• The 58000 minutes her feeding tube was in, followed by the 1 minute with Uncle Brad where her feeding tube was out. Followed by another 110000 minutes it was in until she convinced us the 13 minutes of crying when replacing it every 800 minutes was JUST NOT WORTH IT.
• The 60 minutes it took us to finish our first 5K-Thanks for pushing the stroller, Papa!
• 30 painstaking minutes Aunt Jenn spent painting tiny toes with a toothpick. You've never seen such style on someone just 40000 minutes old.
• The 3 minutes she still spends each day eating her toes.
• The thousands of minutes she spent learning to stand, with no furniture or support, just from a sitting position. It's so creepy to see her just rise up like that.
• Clara's daily 10 minute routine of looking in her fishbowl. Or down her shirt. What is she looking for?
• The day Clara spent 10 minutes wrestling her Boppy. And then 20 minutes wrestling the curtain. She lost both rounds.
• The 5 minutes each day where, if I catch the right window, Clara will let me put anything on her head.
• The 8 minutes each night where Clara and I smoosh our faces together and I kiss her cheeks and ears and nose and she presses her face in tighter and tighter. That's our favorite bedtime routine.

I can't begin to measure the joy we've experienced this year.
Happy Birthday, Sweet Pea, Clara Bellisimo, Coco, Flirty Face, Baby Girl!
We love you!
Mom and Dad

This Is How Clara Feels About Brunch:

Bored, mostly.

What I Didn't Know A Year Ago

As I've thought about the holiday season, spent time with family, and celebrated big milestones, I realized that this was a year of growth. We didn't ask for some of it, but this year has brought bigger changes than any of the 8 Todd and I have spent together so far. And so, a recap of our year. Count this as our Christmas letter for 2012 :)

Just a year ago...

I didn't know what CHD meant. Congenital Heart Defects impact 1 in 100 babies born each year. Teeny tiny walnut sized hearts can be and are operated on at just 3 days old, by cardiothorasic surgeons that are part genius, part sociopath (you'd have to be) and part miracle worker. I didn't know I could hand my tiny puffy baby over to these super heroes and trust them so much. I didn't know it would be so scary or foreign, but I knew I could do it because of the support of family.
I didn't know much about genes and chromosomes, but I know a lot more now. I know that missing pieces, extra pieces, and extra copies of these little blue prints of life can have such varying and scary and wonderful effects. I know now how much that diversity of outcome can be a blessing, and while I hope for proper medical intervention to make life easier for all those born with chromosome abnormalities, I wouldn't want to 'cure' Clara. I'm proud of her missing pieces. I didn't know that before I met her.
I didn't know that hospitals have valet parking. That Primary Children's has a 3rd floor balcony off the Children's Surgical Unit. That the U of U women's center is so good at helping new moms who had to send their baby across the bridge to Primary, that they would save meals for me or schedule my meds around visiting my baby or welcome my family as their own during such a hard stay and that they would laugh with me when I was experiencing the strange, invasive, embarrassing and crazy process of recovering from childbirth.
I didn't know what it would sound like when Clara first cried. Because of the intubation and exhaustion from surgery, the first time I heard her cry was a tiny, raspy, mechanical sound. We were in the middle of CPR training with the nursing staff and I heard a strange noise coming from Clara's bed. It took me a few minutes to ask if that was her crying, and when the nurse confirmed, I almost cried myself. Part of me was so excited to hear it and part of me was so sad that she was almost a week old before I heard her make any noise and worse, I hadn't realized that I hadn't heard her cry until I heard her cry. Shouldn't a mom be aware of things like that?
I didn't know how cute it would be when Clara would lay on Todd's tummy and grab his facial hair. Her dad has the best chops around.
I didn't know how glad I would be to return to work, to find order in my spreadsheets and meetings and projects. I never know when Clara will get mad or sick or needy, but I have more control in my work life. I need that balance, it comforts me.
I didn't know so many new words would be added to our vocabulary. Tegaderm, tubies, pulse ox, kCals, conduits, stents, gavage, cath lab. My mom used to be a volunteer at Primary's, giving directions to people coming in to the hospital looking for various departments. She told me she had heard of the cath lab a million times, but didn't know what it was all about. We all know that intimately these days. And where it is. And how they will show you a video of them placing stents in your baby's heart. And how it will make your heart stop for just a second, to see those things going in and messing with her heart. It might be the scariest and cooling thing I've seen on video.
I didn't know that, by law, there is a heart mom awake and available on Facebook 24x7, 365 days a year. I always know I can get advice or comfort, no matter the hour, and the information is much more reliable than WebMD.
I didn't know how much I would miss some aspects of our pre-Clara world. We don't get to spend as much time as we once did with our closest friends, and we have no money to do anything with them when we do have time! But I also didn't know how thoughtful friends and family could be, how much we would benefit from the time and love and babysitting skills available to us. We are so grateful for that.
I didn't know that a baby who slept through the night (12+ hours!) for the first 6 months of her life would change her sleeping habits and start waking up for food at 1:00 and 4:40 and maybe again around 7:00. Who told her babies eat at night?
I didn't know how bad I would feel when I let the stress get to me and lashed out at my little sister at the family reunion, or got short with my mom when she was explaining something she had read online about not having a thymus, or when I was short tempered at work when Dave asked me a perfectly reasonable question about ISYS.
I didn't know how much formula cost. Or how upsetting it is when tons of it leak out of a bad port connected to a feeding tube. And all over the floor. And the baby's bed. And you just know it's going to smell awful tomorrow.
I didn't know how many times this year Todd would walk in to the living room and catch me crying while reading yet another blog about families going through similar things. There are so many stories of hope and sadness and joy and despair. That's the thing about kids. You just don't know what you don't know.
I didn't know that this season of The Office would be the funniest ever, and would once again be one of the best cures for a bad day.
I didn't know we would say goodbye to our little dog Gir. It was way too early and we weren't ready. I didn't know how much Clara would love laughing at dogs-she shows no fear, just a desire to giggle and grab their eyeballs or ears. The few months she had with Gir gave her something that she loves so much, just like her dad.
I didn't know that joining the heart world would mean taking on the fears and joys of so many, and that I would love it. We have vicariously experienced infections and transplants and feeding issues and new babies and saying goodbye to sweet heart angels. Every day I think about these families. It has quite literally changed my life.
I didn't know how fast Clara would grow and change. Going through photos tonight, I am shocked to see this little-old-man-sack-of-potatoes change in to a smiling baby, discarding her oxygen and feeding tubes, and now sitting, crawling, and pulling herself in to a standing position. Since spending a night with her cousins, aunts and Nana last week, this Sweet Pea has not stopped laughing and teasing and talking to us. They seemed to have flipped her silly switch.
I didn't know about Nap Nannies and Puffs and the proper etiquette for changing a really stinky diaper in a very busy bathroom at Old Spaghetti Factory. What do you do when the garbage can is so far away from the changing table and you're trying to balance the baby, the dirty diaper and dirty clothes and the clean clothes and the possibility that you have poop on your hand and wait, is that a little girl singing to herself in one of the stalls?
I didn't know I would love becoming a mom, more than anything I've ever done or imagined. Bodily fluids all over the joint and all.
"There are years that ask questions and years that answer." I was trying to decide which this year was for my little family. I think that this was a year of answers, resolutions, endings. The culmination of the years of marriage Todd and I spent building a strong foundation for our family. And just as surely as the answers to what that means to us are being delivered, like any good toddler, it leads to more questions of why and how and what is next. I am glad I didn't know what this last year would hold, and I'm glad I don't know what I don't know about this coming year.

Our Right to Choose

I used to think I was a super feminist. My little brother used to have all sorts of names for me, teasing me about my need to push my agenda and the ideas of leaders in the women's rights movement. "A woman needs a man like a fish needs a bicycle." I had that hanging on my wall. My mom would laugh under her breath, never taking it too seriously, knowing it was a phase.
At work, I am part of a leadership team that is about 50% women. I spent many years thinking these women were my competitors and feeling a need to be superior to them. There were personality clashes and some really ugly talking behind backs and other junior high behavior. It felt like a race for attention, accolades, and promotions. A few years ago, one of the women I had butted heads with for so long told me she respected and admired me, and it blew my mind. I secretly had always been jealous of her success and saw her as a great example in so many things, and yet felt pitted against her and would not admit my need to have her on my side. When she took that step to talk to me and express those things, my perception of being a woman in the workplace changed dramatically. I wanted to be like her, openly. And I told myself I would find a way to take up the gauntlet-I would be a leader of women, I would not keep competing with coworkers based on nothing more than our gender.
Having a daughter has reinforced my need to be a feminist and yet to redefine what that means to me. I want Clara to have every choice in the world when it comes to career and love and life. And I want her to know that getting married and becoming a mom can be choices she makes along with or in lieu of a career. My choice to work full time as a mom is right for me and for my family. She'll build her family her way.
I saw something online today that really bugged me. A woman was making jokes about another woman with a lot of children, making snide remarks about making sure she had birth control. My blood boiled for a few minutes. It is what prompted this post.
I am sad when I see women not supporting and celebrating each other's choices. I want Clara to have the right to have 7 screaming kids if she wants them. I want her to have the right to have no kids if she wants. And I want her to be able to make all those choices with the support of her sisters-the women she makes friends with and the women who know nothing about her and see her in a store.
When we joined the heart world, we joined a sorority of heart sisters who have brought such joy and knowledge and support to each other. I often feel so very socially awkward and have a hard time putting myself in new situations without a safety net of friends or family. But I have grown to see that there are people who, through a shared sense of unexpected identity, think nothing of what I look like, what I have accomplished or what I believe. They welcomed Clara and my family immediately and offered support with no judgment. And when I think about what it means to be a mom and the first example Clara will absorb of being a woman....I am just glad to have gone through those phases and come out stronger and hopefully wiser.
Clara will know that she is a divine gift, and that being a woman is special and important. That she deserves respect and love. She will be taught to be strong in her own choices and stronger still in not putting down the choices of others.

As a feminist, it is my right to be bald like a boy.
And super cute anyway.



Silly Girl

She just keeps me laughing, every day...




Learning to crawl, by climbing up Mom. She also has gotten good
about wriggling her eyebrows at me when I do it to her.

"If I could master this face with the crinkly nose they love, I'd NEVER have to nap again!
Bwa Haa Haa!"





Judgy Face. Like I'm the first mom in the world to spend the day wearing
pajamas and eating croissants for every meal.
 

 She doesn't really care for socks and such, but she'll let me put any old
thing on her head. Like pants.

 

Has there ever been a cuter thumb sucker?

 

Flirting with her dad

 

 

 

How's My Parenting? (Call 1-800-OOPSIE)

We don't know what we're doing here, but we are having fun.

 

Aunt Sherrie and Clara

It's been a busy few months, we come alive around here when the summer heat ends. Clara finally got to meet my brother and his family from Texas, and my sister and her family from Virginia. We even got to spend a few rain-soaked days up at Swiss Days where Clara loved napping on Aunt Sherrie and visiting with heart-Aunts Jill and Angee.

Wriggly Girl! I have
a feeling her next echo
might have to be a
sedated one.

September and October were full of doctor appointments-nothing radical, just a bunch of vaccinations and weight checks and an echo. Her last echo looked good, though there is still a bit more gradient (narrowing) where the stents were placed. Dr. Pinto estimates that her next open heart surgery will take place closer to 3 years of age than the original 5 or 6 that we hoped for. We'll have another echo in January to check that the stents are still doing their work.

Watching TV makes
her so happy!

Clara has gotten so silly the last few months. She is so quick to smile, and she loves TV. This is where I begin to question our parenting skills-she will stop crying or eating or anything she is doing when she hears the following on TV: the theme song to the old Beverly Hills 90210 (weekday mornings on Soapnet, I am not ashamed to DVR it), Chris Matthews on MSNBC, and the guy in the Humana commercials. And when I say she stops to watch TV, I mean she stops and smiles and giggles and focuses on the TV. We might have ruined her already.

She also smiles anytime we sing her theme song. Oh, yes, you heard that right, she has a theme song. The only words so far are "Clara-bell! Do do do!" followed by a bunch more do do dos. We don't want to pigeon-hole her yet, before she has had a chance to develop all her super powers. So we'll fill in the do do dos later with actual lyrics, once we know what type of skills she has, once she's picked out her cape and tiara, etc.


Eating toes

Clara also has started to eat very well, she's averaging about 24 ounces a day finally and is still on the growth chart in the 4th percentile at 14 pounds. We decided to try baby foods a few months ago, without really checking with her doctor or following any of the prescribed methods used to introduce babies to new foods while watching for allergies. Nope, we just jumped right in and tried peas and squash and bananas and pears....she loved them all. Her pediatrician later had us slow down and focus on just a few foods at a time, and in very small amounts still. But sometimes we throw caution to the wind and let her have jello. There's always jello at Aunt Jenn's house.

Eating wipes

She also eats, well, everything else. Fingers, blankets, toys, floor lint, my hair, things that make crinkly noises, toes (hers, mine, Todd's), diapers that get left too close to her hands, the wipe packages, the clothes on her body. Everything. She's also going to crawl, any day now. I can't imagine what she'll be finding to eat next.

We had a wonderful Thanksgiving with Todd's parents this year, just them and us and Clara. We love to show off our girl and how big she is getting, everyone tells us she looks so much like her dad, but that might be the bald head :)

I took Clara shopping with us on Black Friday, she was pretty fascinated from the first stop at Lowe's where she ended up in a bucket. She lost enthusiasm after about 7 hours and no real naps, but sure giggled when we got home and she got to see her dad (and she finally saw the floor again, her favorite place to play. She had been in someone's arms for days, with all the visiting family, she almost lost her mind when she got to stretch and roll and crawl again!)

I love the holidays, and I'm so excited for Clara's first Christmas. It has been a year of ups and downs and heartbreak and joy. We've met new friends in the heart and 22q worlds, we've said hello and goodbye to some, we've bonded as a family. About 3 times a week, Todd and I have to look at each and ask "well, now what do we do?" Becoming parents has been the most fun challenge of our marriage, we love making it up as we go. And we're certain we'll be purchasing at least one helmet this Christmas season, it's chaos around here.