Give Kids a Hand

Click here to Give Kids a Hand for Team Charlotte

For nearly 130 years, Children's Memorial Hospital has provided brilliant pediatric care to the children of Chicago, Illinois, and the world. A bit of history from the hospital website:

Children's Memorial was founded in 1882 by Julia Foster Porter near the site of the present hospital in an eight-room cottage. Mrs. Porter established the hospital in memory of her 13-year-old son, Maurice, who died of acute rheumatism. Children's Memorial was the first hospital in Chicago dedicated solely to the care of children, at a time when the field of pediatric medicine did not even exist.

The hospital will celebrate its 130th anniversary by opening a state-of-the-art facility in the Streeterville neighborhood of Chicago. The adjacency of the Prentice Women's Hospital will mean that women like me will not need to be separated from their sick children. Instead of a three-mile distance that I was unable to cross while I convalesced from a c-section, I would be able to visit my infant in the PICU in a wheelchair rolled across a bridge connecting the two hospitals.

An even greater impact, especially for children like Charlotte, will be the ease of collaboration between pediatric and adult specialists at Children's and Northwestern Memorial Hospital. These collaborations occur today, of course. But, now, researchers and physicians will be on the same campus, facilitating even greater and faster collaborations.

As I've heard Pat Magoon, Children's visionary CEO, say, we are in an age of beautiful problems--children with heart defects, cystic fibrosis, spina bifida, and other historically mortal health problems are living into adulthood. But, they are still treated by pediatric specialists since adult doctors have never dealt with their problems. (We saw a 30-something-year old in the PICU for a heart surgery in 2005.) The new Lurie Children's Hospital will begin to bridge that gap.

One of my colleagues on the Children's Service Board, Holly Duran, has said for years that Children's offers 5-star healthcare in a 2-star building in Lincoln Park. The new hospital will put children, doctors, nurses, and other healthcare workers in the building they deserve. It will allow for better care, better recruiting of top doctors, and better access for all children.

Children's Memorial may be located in Chicago. But, it is a world-class medical institution that treats children from all over. In 2011, the hospital treated more than 148,000 children representing every state in the nation and 33 countries. The Lurie Children's Hospital will have more beds and be able to treat even more children.

As this season of joy, generosity, and cheer draws to an end, I would like to ask you, the followers of Charlotte's Journey Home, to join us as we continue to help make the Ann and Robert H. Lurie Children's Hospital of Chicago a reality. We hope to raise at least $1,000 in the name of Team Charlotte and earn her name on a tile mosaic in the hospital lobby. No amount is too small, and of course, no amount is too large. Follow this link (and make sure you land on a page that says "Team Charlotte" at the top).

Alternatively, follow this link and choose "Support a Fundraiser" in the left-hand nav. Then choose the radio button for "Search for a Team" and type in Team Charlotte. Click on the link for the team and choose "Support Team Charlotte" from the right-hand nav.

From our very grateful family to yours, best wishes for a healthy 2012.

Cradles to Crayons

After shopping for disadvantaged children for two hours, Charlotte poses for a photo.

In this wonderful season of getting, we like to take a moment to give. Last week, on the day of Erev Hanukah, Charlotte and I took a huge box of her outgrown clothing, toys, and books to Cradles to Crayons, my current favorite Boston-area philanthropy. Cradles to Crayons has an extraordinary vision:

To ensure that "one day every child will have the essentials they need...to feel safe, warm, ready to learn and valued. Through the Giving Factory, we provide those essentials, as donated clothes, shoes, books and school supplies to homeless and low-income children. We also offer meaningful volunteer opportunities to hundreds of corporations and thousands of individuals and families each year."

In some ways, it's not such a big deal to donate used items. We do it whenever Charlotte outgrows clothing and toys. This year, Charlotte and I made a deal that she would purge at least 8 toys/books prior to Hanukah as she was certain to receive at least eight new toys/books to replace them. We had fun cleaning her room.

Then we made a date at The Giving Factory. We started by dropping our box at the loading dock. After that, we met Tams, the family volunteer coordinator. She gave us a brief tour of the warehouse, showing us how toys, clothing, books, baby gear are all tested (battery-operated items still work; tires are good; puzzles have all pieces, etc.).

And, then the fun really began! We got a sheet of paper with a child's name, gender, age, and a list of needed items. With a shopping cart, we went up and down the aisles, gathering correctly-sized clothing, shoes, appropriate books and arts & crafts kits. As we completed each sheet, we went to the check-out table, filled a bag and handed it over to the clerk. We got a new sheet and began again.

We did this for two hours, filling bags for boys & girls, babies & toddlers. But..we couldn't fulfill every need--there were no size 4/5 coats for girls, no hats or gloves for babies ages 0 to 24 months, no shoes for boys size 7/8. We filled bags for at least a dozen children, whose names I swore I'd remember--Angel, Miguel, Catherine, Kevin, and more. Charlotte declared it the "best day of vacation" and asked when we could go back.

Cardiology Update

First picture taken with my new camera. Thanks, Philippe!

Most of the time, Charlotte is just Charlotte--funny, sassy, smart, and sweet as honey. Most of the time, I see her scars as you see your child's freckle, or the scar from their skateboard crash. In other words, scars are just part of who she is. At bath time I see her big scar, however, and some part of my brain registers all that it means.

About once a year, we are reminded in full force of the meaning of all of her scars, what they have brought us, and what we (and she) will have to endure for the rest of her life.

That time came a few weeks ago when Charlotte had her cardiology check up with her new Boston cardiologist, Dr. Lucy Arnold. It was a bittersweet meeting--we LOVE Dr. Young and have been her patient (me, too) since 2005. Change doesn't come easy. But, Dr. Arnold was recommended by our pediatrician, Dr. Mitchell, and we quickly understood why.

That's Charlotte's heart on the screen. And, yes, there's Bubba, ever-present.

We had two appointments. At the first, Charlotte had her EKG and a physical exam. When Dr. Arnold entered the room, Charlotte was having a full out tantrum because she can't stand the EKG stickers. The stickers connect twelve leads to the machine which, in turn, creates an image of the electrical changes in her heart by measuring the electrical impulses in each heartbeat. The stickers are very sticky and taking them off has not, in the past, been easy. But, you can imagine that a hissy fit can affect the reading. The longer she fusses, the longer the test goes on. Dr. Arnold managed to calm her down very quickly. I got the sense, however, that Dr. Arnold might have thought Charlotte was spoiled or that I wasn't effective at handling her. While I liked her manner with Charlotte, I was worried about her impression of us.

Everything looked good upon the first exam so we schedule the follow up appointment with for an echo cardiogram. I spent about a month working with Charlotte to make sure that Dr. Arnold's second impression of her was better than the first. Charlotte walked in smiling, hopped up on the table, and cooperated gleefully, all the while chatting about her school day.

Dr. Arnold brought a student technician and narrated the entire 45 minute exam, talking about truncus arteriosus and Charlotte's particularities. She also answered Charlotte's questions, such as:
"Why does the image show blue and red?" The different colors indicate the direction in which the blood is flowing (not oxygenated/deoxygenated, as I had thought), so that the doctor can see that it is flowing where it should and when it should.
"What does a valve do?" It works like a door, opening and closing to let the blood in when it should come in.
Charlotte was calm and happy the whole time, only getting antsy in the last 5 minutes or so. And Dr. Arnold was terrific with her.

The hero of the day, however, was Maria, the technician. When the exam was over, Charlotte took a deep breath and started to cry and fuss about taking off the three stickers from the echo leads. I tried reasoning with her about how much less sticky they are than the EKG ones. We were about to leave it that they could soak off in the bath (really just a delay tactic as they don't soak as well as band aids). Maria walked over with the sonogram gel and said, "I have a trick for the stickers." As she explained her trick, she squirted some gel on and around the lead and it slipped right off. Charlotte was protesting, "No, I don't want to try that," but it was already done. So Charlotte let Maria take off the other two as well.

I think Charlotte (and hopefully me, too) made a much better second impression on Dr. Arnold. I know we were as happy, if not happier, the second visit, too.

Now, you're wondering, what about her heart? Well, rest assured if there were big news, I'd have led with that! From her initial impressions, Dr. Arnold sees slight stenosis in the pulmonary artery, but nothing that is affecting blood flow yet. Other than that, all the heart functions look healthy. We're still awaiting the "official" report, but it all looks normal (for Charlotte) for now.

Happy Thanksgiving

I'm sitting in my brother's kitchen chatting with my niece while she makes apple pies for Thanksgiving dinner. She's a college junior. It seems like yesterday she was sitting on the puzzle pieces so I couldn't help her. Or asking me to swing her again and again. Or writing me the sweetest letters an aunt ever received. Now we're talking about poli sci classes and life after college. It's rather amazing.

Later today we're heading to visit my friend Debbie and then to my sister-in-law's sister's for the holiday. It's going to be a day filled with old friends (I've known Debbie since we were four), family, and a great deal be thankful for.

One of the things we're always thankful for is Charlotte's continuing good health. This year we're also grateful for her incredibly talented teachers who are making first grade a year of learning, discovery, and fun.

Wishing all of you a beautiful, love-filled holiday!

On that September Day...

Alan Jackson, the country artist, has written a beautiful song entitled "Where Were You When the World Stopped Turning?" to commemorate all that we lost on 9/11. It brings tears to my eyes with its simplicity and honesty.

We all know where we were--I was on the Edens driving from Chicago to Buffalo Grove, listening to my friend Mary read the news on WXRT. When she and her morning deejay partner Lyn mentioned the first plane on the air, it was so unreal, "probably a single engine private plane" whose pilot hadn't had enough coffee and took a wrong turn. Philippe was in a hotel room in Minneapolis, watching the end of a movie on HBO. My brother was in Ohio, waiting for the plane he intended to catch to go home.

Within moments so much had changed--I pulled into a parking lot and my colleague Dawn yelled to me that a second plane had hit the second tower. As a former government employee, she immediately recognized what was going on and hurried me to a television. Philippe went to the hotel bar to get a coffee and couldn't figure out why everyone was staring at the television. My brother watched the second plane hit, left his gate, and managed to get a rental car to get home.

But, my childhood friend Jeffrey Gardner cannot tell us where he was or what he did when the plane hit the tower he worked in. All we know about that day is that he didn't make it out. Knowing Jeffrey, we can assume much more. If he wasn't killed on impact or severely injured, Jeffrey did all that he could to help others, either tending to the injured, trying to evacuate the building, or just leading folks in prayer.

I know this much: my generation lost its innocence on 9/11. A lot of extraordinary people were killed in the terrorist attacks and, subsequently, a lot of ordinary people chose to serve our country as we went to war. I lit a yarzheidt candle today for Jeffrey; for victims on the airplanes, the Twin Towers, and the Pentagon;, and for the members of our armed forces who have sacrificed in the past 10 years.

And I answered all of Charlotte's questions. She's not too young to know. It is weird to me that my students were children on 9/11, that a generation is growing up for whom 9/11 is truly history. I suppose it shouldn't be: Philippe and I ended the day at the movies, seeing The Debt, a film which deals with the aftermath of the Holocaust. WWII is, for my generation, truly history. So, 9/11 as history shouldn't surprise me. But, the fact of one cataclysmic day, a few short minutes, changing all we feel about our safety, security, and peacefulness seems so different.

On that September day, I was driving, enjoying the clear blue sky and the sound of my friend's laughter on the radio. On this September day, I took a 15 mile bike ride with my family (yes, Charlotte, too!), went to a picnic, made a new acquaintance, and spent good time with my husband. And not for one minute did I forget that Jeffrey Gardner was unable to do the same. I dedicate this day to Jeffrey, for whom "good day was as bad as it gets." He was, simply put, a joyous human and a kind soul. I'm proud that for his short time on earth I was able to call him "friend."

For my usual Jeffrey post, click here.

Give your kids an extra hug tonight.

Six Years in the Making

Did anyone else notice that this was the shortest summer on record? School let out yesterday, it seems. And today, after much excited anticipation, Charlotte started first grade. It feels like just yesterday that I dropped her at daycare for the first time. She said to me that she was amazed at how quickly she seemed to get to first grade. I responded, "Actually, sweetie, it's taken you a good six years to get here." I don't think she quite understood me, but as we drove to meet her teacher yesterday, I had a virtual newsreel of highlights from Charlotte's life playing in my head. Six years--six long years and yet six incredibly short years.

Charlotte has been looking forward to this day since about a month before Kindergarten ended. In fact, I think her Kindergarten diploma (Yes, she got one, but the "ceremony" was limited to the school director, her teachers, and the class.) mostly impressed her because it meant she was a first grader.

All summer we've heard about how "first graders do this" and "first graders do that". First graders, for instance, sit in an assigned chair at school; help their mommies choose vegetables at the grocery store; cross the street walking next to mommy, but don't have to hold hands; and first graders have homework (very exciting). In short, first graders are big kids.

When we asked Charlotte why she was so excited about first grade she said, "Because I'll get to do more math and science." I think her teacher will have her hands full with this one!

We walked Charlotte into the schoolyard and chatted with other parents while the kids climbed and played. It was cheerful chaos as the whole lower school (1 through 5) gathered before the bell.

We were a bit concerned because Charlotte was not put in a class with any of her closest friends and she's in the biggest class. A friend said, "Show her the list and see what her reaction is. Maybe she'll teach you something." Teach she did--while she wanted to be with Sarah and Henry, she glanced at the list, asked about her teacher, and talked about playing with her friends on the playground. She's happy to have several children from last year in her class, one of whom was at her birthday (the measure of kindergarten friendship, right?).

As parents greeted each other, Charlotte had "smile conversations" with her friends, but explored the playground on her own. I tried not to worry about her social integration--her buddies clearly delighted in seeing her, and she them, so I think she just needed to run her nerves off.

The bell rang. The children lined up with their classes, hoisted their backpacks onto their backs, and, first graders in the lead, filed into school. Just after I took this picture, Charlotte turned and blew me the biggest kiss ever, movie star-style.

About four and a half years ago, Charlotte started to crawl. She got on her hands and knees, gave me one of her angelic mischievous smiles, and turned to scoot away as quickly as she could. I realized in that moment that my goal as a parent is to raise my child to be able to walk away from me with confidence and clarity, but to always know I'm there and to (hopefully) always want to come back. That movie star air kiss made me feel like I just might be getting it right (so far).

How did it get to be time for first grade?

Last night I attended an information session for first grade at the International School of Boston. The director of pre-school ended the session by joking (sort of) that he knew that the kindergartners were ready for first grade, but that he and the teachers had wanted to help the parents be ready.

Truthfully, we're not ready. We look at Charlotte and she's still our tiny little baby. Okay, she reads, writes, tells (bad) jokes, plays complex board games, and is a charming companion. But she's our baby.

Charlotte, however, is ready. How do I know? This morning she told me that she had a field trip with her class today to a mill. They've been studying wheat, so going to see it ground into flour would be a good next step, right?

I said, "No, I don't think so, sweetie. I don't remember an email."

She didn't argue or anything. "Okay."

We headed to school where I ran into one our class mothers. She said, "I'm going with the children today." I said, "Where? Is there a field trip?" "Yes," she said, "to the mill."

Charlotte's grin required me to put on my sunglasses.

I quickly remembered the email we received earlier in the month about field trips. I said to Charlotte, "Sweetie, at the mill there are no bathrooms. You'll have to squat in the woods."

She said, "I know, Mommy. Isabelle told us."

"Oh, okay. Oh no. I didn't pack you a lunch." [Charlotte has hot lunch at school on Wednesdays.]

"Mommy, I have hot lunch today. Isabelle will have my lunch. She told us that she'd have lunches for anyone who gets hot lunch today."

Apparently, Charlotte is an excellent listener at school And though I hadn't put the field trip on the calendar and didn't receive the reminder email from school, she was well-prepared.

If only Charlotte had told me last night, I wouldn't have felt like such a dope!

She's totally ready for first grade. I, however, may need to repeat kindergarten!

Heart-a-versary

Charlotte sometime before her surgery. (May, 2005)

Last Monday we celebrated Charlotte's sixth birthday. Of course, she "celebrated" with her second bout of strep throat in 3 weeks (who knew I was supposed to change her toothbrush?! We're still P.I.T.s*). Just as I finished icing the cake for school, I got a call to pick her up because of a high fever. Not to worry, she had cake that night at home, cupcakes at school on Thursday, and yesterday she had a magnificent puppet party.

Today, we pause to celebrate--a bit more somberly perhaps, but with equal amounts of joy--Charlotte's heart-a-versary.

Six years ago today, we handed our teeny-tiny baby to the anesthesiologist. I remember him as being quite tall and having an Australian accent, but I was post-surgery myself so am an unreliable witness. He cradled her in his arms and we all walked to the operating suite. There we gave our baby, our hopes, and our trust to the great good team of Drs. Mavroudis, Backer, and Stewart. On the way to the waiting room, Philippe collapsed in my arms.

We waited. And waited. And then Dr. Mavroudis came to us smiling, telling us that Charlotte was back in her room and the nurses were setting up her meds. I think that was the first time we breathed that day.

Charlotte immediately post-surgery (May 16, 2005). So little amidst all those tubes, medicines, and equipment.

So today, as every May 16, we think of those wonderful doctors, as well as Charlotte's formidable cardiologist Luciana Young; her lead nurses Nancy Smith and Samantha McCoy; and all the staff and nursers who gave our daughter back to us.

She may have been born on May 9, but it was on May 16 that Charlotte was given a fighting chance at life. We will be forever deeply grateful to all of you who helped make that happened and who supported us through the long days and nights that followed.

Charlotte last Monday. Feeling terrible with strep and exhausted after a 2-hour doctor appointment, but ready for her birthday cake.

Now She Is Six

Every year I write Charlotte a birthday letter. This year, I’m borrowing a bit from a poem I’d been waiting for six years to read to Charlotte. I read it last night on “birthday eve.” She squealed in delight. Forgive the slightly “holiday card” beginning, please.

Dear Charlotte,

When you were one, you had just begun.

And what a beginning it was. After you blew out you first birthday candle, Daddy and I went out to dinner to celebrate and to breathe a deep sigh of relief. Your first year was full of challenges, of the regular sort and of the not-so-regular medical sort. You delighted us daily even if your medical issues concerned and challenged us. On the day you were born, a first birthday wasn’t something we were sure we should think about. I still think it’s one of your finest accomplishments!

When you were two, you were nearly new.

Celebrating two with Sheri (Sheddy).

Four months after a second heart surgery, your second birthday found you growing at incredible rates, eating (!), and teaching yourself the alphabet. You loved having a birthday, gleefully unwrapping presents even if you still weren’t interested in the cupcake. I can still see your outfit, your glee at music class when everyone sang to you in French, the playground, and your beautiful curly mop.

When you were three, you were hardly she.



I think Milne must have meant that a three-year old is still a newling. Our three-year old was SO you. Everything you were at three—silly, smart, sassy, sparkling—you still are three years later. You had your first real birthday party and you ate your cake. You wanted to be involved in every detail of planning it, including asking me to make a yellow cake with chocolate and pink icing.

But, I’ll agree with Milne that compared to now, you were hardly you. You were simply too little for your personality!

When you were four, you were so much more.

This may be my favorite picture ever!

Four was a hoot, to be honest. As one friend’s sister puts it, “four is the terrible twos plus vocabulary.” I’m glad to say our twos weren’t terrible. And four was two plus vocabulary. I didn’t blog much that year and it’s a shame. Just a list of the things you said and learned would have made for hysterical reading. You traveled to Paris and Boston and reveled in adventures you still talk about. You started talking about your birthday in December and never wavered—it had to be arts and crafts and the cupcakes had to be….yellow cake with chocolate icing. (Your cake on the actual day? Yellow, chocolate & pink icing.)


When you were five, you were just alive.

The past year has been an extraordinary year in the life of this parent, just watching you blossom. In junior kindergarten, you had a master teacher, Corinne, who recognized your talents and challenges. She kept you front and center to keep you focused, and she challenged you. You made incredible social strides—you had a few very close friends and were also a well-integrated part of the larger group. By the end of the year, any social problems that had concerned us at age 4 were totally gone.

Not only did you eat the cake, but you figured out that birthdays are really all about the cake (and the party). You also figured out that you could ask your baker for one thing on your birthday and another on the party day. We went with a chocolate fudge cake (from scratch) on the birthday, cupcakes for the party.


You started Occupational Therapy just before your fifth birthday. From May to December 2010 you thought you were just playing for an hour a week with Miss Jill. We watched you progress in your balance, physical risk-taking, and posture. And you loved going.

Summer brought your first big day camp experience. I worried that you wouldn’t want to get onto the bus the first day. Silly me. You nearly forgot to say goodbye to me. Fred’s Camp was an amazing experience—your only knew two girls in your group, but made friends quickly (starting, as usual, with a boy). You tried all kinds of new sports, got into the pool daily, and came home every day happy, filthy, and exhausted.

In September, kindergarten wasn’t the big transition is for many children since you knew the school. But, none of your three “best” friends were in your class, in fact none of the girls you knew well were in your class. I was worried. Needlessly, it seems. Within a week, you had figured out that you could play with Felix on the playground and you relaxed and made great new friends in your classroom. Your teachers were, again, extraordinary. Mrs. Lovito made English class the highlight of each day. Marie Gladys and Laurence helped you surprise us by encouraging your reading exploration in French.

It was beginning in December that you taught me all your lessons for the year. After your holiday show at school, the movers came and packed us up. Your last night in Chicago was your first sleep over, at Trudy’s house. Then we picked up and moved east.

The transition you hadn’t really had for kindergarten happened when you began at the École Internationale de Boston/International School of Boston. As you described the change, “It wasn’t all that different. My teacher has brown hair instead of yellow. My assistant teacher is a man, not a woman. And the children are different. Otherwise it’s the same.”

I think you make it sound easy, but I know it hasn’t been. In Chicago you knew everyone at school, had a few close friends but played with and were friends with everyone. Suddenly you knew no one, had no playdates, didn’t seem to quickly be on birthday party lists, and spent a lot of time with Mommy.

Your teachers and you said you integrated quickly into the class. Certainly, you fell into the academic routine quickly, thanks to your talented teachers Isabelle, Axel and Jeanne. It turns out that you returned to playing alone on the playground more often than not. Happily, most of the time, I think. You would play with another child if the teacher suggested it. A little girl named Natalie (from another class) befriended you. It took about three months before you started talking about your friends at school, consenting to playdates, and talking about who you’d invite to her birthday party. But, you never once complained.

I think having Jenna (our upstairs neighbor) close by for one-on-one time made the transition easier. And I’m grateful for the spontaneous knocks on the door this winter. I know Jenna made snow days more fun!

Through it all, you have never complained; (almost) always went to school with a skip and a smile; and tried hard not talk about how much you miss Chicago, the Lycée, your pretty green room, and your house. You are quick to answer the question, “What do you like best about Boston,” and you have become quite the Red Sox fan.

Your personality has been evident from your first 72 hours in the PICU—you observe the world around you, takes it in, and figure it out. You’re strong, resourceful, and smart. You’re sassy, silly, and sparkly (thanks Aunt Bobbie for the perfect birthday card; I’m totally stealing its description). You have always been all these things. But in the past six months you have begun to connect your personality to your world, live in that world socially and sensitively, and remind me always that kindness and a smile make everything better and easier.

Yesterday my friend Vanessa noted on her Facebook page that while she loved the gifts she got for Mother’s Day, the gift she gets every day is her daughter. I echo this—you are my (our) gift. You are my sunshine and my heart.

Now you are six, you're as clever as clever. I know you won’t be six forever and ever.


I will cherish every day that you are six, or as you put it this morning “the six-iest” [folks, I really don’t make this stuff up!]. As you enter your seventh year, I hope you’ll continue to be sensitive and sparkly, silly and kind. I look forward to watching you learn to swim, go to a new day camp, and (gasp) start first grade. I hope you’ll still find comfort snuggling up to read, ask me to push you higher on the swing, and dream up games for us to play. I know you’ll be as stupendously six as you have been fabulously five and I am looking forward to the ride.

May you grow from strength to strength.

Rumplestilskin

Who knew that in addition to super-fresh seafood, easy access to mountains and the ocean, and proximity to my family, our move would bring us to "the heart of the most fertile puppetry-producing region of the country."?* And that proximity would make us neighbors to the best-kept secret in Boston, The Puppet Showcase Theatre?

Yesterday we took Charlotte to her first professional (i.e., non-birthday party) puppet show, in a theatre dedicated to nothing but puppets. We had no idea what to expect beyond a puppet-rendition of Rumplestilskin. We were all delighted by Dream Tale Puppets' production of the tale, performed by two puppeteers and five tabletop puppets. A perfect 60-minutes long, the show captured Charlotte's complete attention. She was delighted by the puppets and the story (a girl becomes a queen, just her speed). We thought the staging was terrific and the story well-told. Lots of good giggling was done by all.

Stay tuned to learn about how this performance inspired Charlotte's activities for the rest of the day and this morning.

Congenital Heart Defect Awareness Month

February was congenital heart defect (CHD) awareness month. Awareness campaigns, statistics, and information were everywhere. So, I decided not to write about heart defects in February.

Okay, I didn't decide so much as not get around to it in time. But, never mind about that because in our little world, every day is CHD awareness day. I thought choosing a random day to write about it would have a bit more impact, make more sense in relating how CHD affects our lives.

We talk often about Charlotte being a gift, her results from surgery being exceptional, and the blessings we've experienced. That's not just our perception. It's the cold, hard fact.

Congenital heart defects are the leading cause of infant mortality in the United States. CHD affects 1% of all newborns in the U.S. Truncus arteriosus is rare among these--latest CDC statistics, 0.72 live births in 10,000 have TA. That's around 300 children each year. Consider that Prentice, the hospital where Charlotte was born, delivers more than 10,000 children each year. and you can begin to get a sense of how few children are born with this defect.*

A recent-ish study demonstrated that truncus arteriosus is one of the most expensive hospitalizations of any defect. An average neonatal stay is $192,781. Average hospital stay is around 21 days.* (Recall that Charlotte's first stay was 49 days; she was above average even then!)

And, the final stat for tonight: 90% of newborns survive their first repair. The degree of complications after that surgery is hard to track, I think. It depends on how much damage the heart suffered prior to repair (for Charlotte, minimal, thank goodness), what other underlying medical issues are there, and (I think) each child's individual constitution.

Those are the CDC stats, the numbers that parents seek out when they first hear those life-changing word, "The ultrasound shows..." After that other numbers take over, ventricular performance, pulse ox, weight, medicine dosages, food intake, months to next surgery, etc.

You've read our numbers for the past five years. So, I'll end with our latest stats.

First, the one Charlotte would like reported--she lost ANOTHER tooth on Monday, bringing the grand total of lost tooth to five. Second, when we met Charlotte's new pediatrician yesterday, we found out her latest "key" stats: Charlotte is 47 1/2 " tall and weighs 46 pounds. She's tall for her age and thin. (Duh, her tights fall down all day.)

Charlotte's new pediatrician is in partnership with my high school friend who I have promised I will not again call "Danny" in the office. Old habits die hard! We loved meeting Dr. Mitchell. And we look forward to seeing if we agree with Dan that she is "the best doctor in the universe." So far, so good!

*Data from CDC.gov and NMH.org

The Blog is Back!

I have been a remiss blogger. As my brother noted on Facebook, we've had a LOT going on--Philippe got a new job for which we've all moved to the greater Boston area. I'll be "back-blogging" about Charlotte's journey to her new home (and new school, new city, apartment-living, etc.), but for now, I wanted to share Charlotte's first day on the ski slopes, Butternut in the Berkshires, to be specific.

BEFORE:

So excited. Ready to rock the mountain!

Do you notice anything different about Charlotte? Yep, her disintegrating top left tooth has finally fallen out. And, even better, her top right tooth FELL out last Saturday night. She can fit her whole thumb in there!

DURING We started Charlotte with a private lesson today. She and her teacher, Amelia, had the coolest names on the mountain today.

AFTER

After an hour of skiing and some time walking around in those crazy heavy boots, Charlotte crashed on the way home.

Skiing, by the way, is a sport that Philippe has been concerned about in terms of Charlotte's heart. He's always wondered if it's okay for her to be in high altitudes and to move at the speeds that intermediate skiers employ. Her surgeon, Dr. Backer, told us that he skis with some of his patients in Colorado (I think), so not to worry. Our friend Jessica, also a truncus arteriosus patient, has told us that her body clearly tells her what it can and can't do. So far, all is good for Charlotte and skiing. Good thing, too. I think she caught the bug in a major way today.

She's SO ready for ski school on Saturday!