She Eats & Eats!

Check this out--I think it speaks for itself. Good thing, too, because Charlotte left me rather speechless yesterday.

Three? Is she really three?

Photo by Susan who was paparazzi to the toddlers last week!

I've been trying to write a poem to Charlotte. It's a cute rhymey thing that would have made my Aunt Frannie proud. Well, not so much proud as inspired to finish it for me because she was good at this sort of poem.

So, I took a break and looked at my two previous birthday posts. In 2006, I ended my post like this:

You see, I started this blog as the tale of Charlotte's journey to being a
regular kid. Well, guess what? She is a regular kid. She's just a regular kid
with a tube in her belly. But that tube helps her be regular, helps her grow,
helps her be on the growth chart (finally), and helps her get the nutrition she
needs to develop normally. She's pulling up, starting to cruise, babbling silly
sounds. She likes to drink water from an open cup and eat salty, crunchy food
(no doubt that she's my kid!).She has this impish little grin that tells you
she's up to no good.

And so, I will begin there as well. At three, Charlotte is a regular kid with a tube in her belly. But the thing is, we haven't used the tube since December and we're really, really hopeful that the tube will be gone by her fourth birthday. She's currently in the 90th or 95th percentile for height/weight (about 33 lbs. and at least 40 inches). She still likes crunchy foods, but she has a true love of chocolate. She runs--all the time--and can finnally jump, too. She's still impish, but now she tests her limits. All the time.




Most of all, she makes me smile so much my cheeks hurt. And she makes my heart swell when she crawls into my lap and rest her head on my shoulder. For a kid who was born with a broken heart, she's sure been able to teach me a lot about what a heart is really for.




So here's the silly, unfinished poem:

So many things you’ve learned to do,
in the year since you turned two.
Talk in sentences, run and jump,
Eat without your feeding pump.

So many games you like to play,
You keep me giggling throughout the day.
Flap like a butterfly, hop like a bunny
Every day you’re a little more funny.

What a year since you’ve turned two
Daycare, music class, so much to do.
One thing missing, and it’s just great
A year with no surgery. Celebrate!

I simply cannot wait to see
what you’ll learn now that you’re three.

It's not the eloquent birthday letter I wrote last year, but certainly it is age appropriate, especially for a kid who still can't get enough of Iggy Peck, Architect or Bouncing Galloping Dancing ABCs. Not that I will ever be able to rhyme like my heroes Andrea Beaty or Charlotte Doyle.


And you know what? She ate her birthday cake!

We Really Are Here

Charlotte is such a regular girl that I've had a hard time keeping up with her lately. In March we went to the Notebaert Nature Museum or, as Charlotte calls it "The Butterfly Museum," for a special fundraising event--a butterfly adoption. When we got there, she was given a live butterfly in a little box and she got to release it into the Butterfly Haven. She had so much fun that she brought her toy butterfly home in the little window box and is still keeping it there. We're going back for their next butterfly adoption in June. We can't wait!



She has discovered that S'bucks kids' hot cocoa. The second or third time we got it for her, she drank some and then asked for a sip of my water. So, I said, "Sure, hand me your cup." She did. It was EMPTY. She'd had it for about 2 minutes. I'll spare you the trip to the S'bucks website: 8 ounces of a kids' hot cocoa is 210 calories. She has at least one a weekend. Many times she asks for it.

Little Miss Charlotte is truly a sassy-frass. Some recent quips:

In the car, listening to her alltime favorite, "Mamma Mia" on the ABBA Gold album, I was la-la-ing along, not singing the words, just kind of singing scat.
Charlotte: "Come on. You know the words." I laugh.
Charlotte :"What's funny?"
Me: "You, sassing your mommy, that's funny."
Charlotte: "You're funny, Mommy, singing that song."

Last week, I told Charlotte that Karley wasn't coming on Friday and that we'd have a special "All Mommy and Charlotte Day."
Charlotte: "Charlotte's a little bit sad about that." (Yes, she still class herself "Charlotte." But, she does say "ch" sometimes.)

Me: "What are you sad about? Spending the day with Mommy? Or, missing Karley?"

Charlotte: "Missing Karley
She also asked Daddy to go away for a while one night so that she could keep playing with Karley.

So many other stories I should have told you as they happened. But, she's been such regular kid that she's had me quite exhausted at the end of the day!

A Year Ago Today

It is so hard to believe that a year ago we were sitting in the surgical waiting room as Charlotte had her second heart surgery. And then beginning our bedside blogging again.


Of course, she came through with flying colors and has, by all accounts, spent the past year become the most regular of kids. She is still my hero.


This is the perfect time to tell you about our new friend, Jessica, a 21-year old born with Truncus Arteriosus. She contacted us through the blog to let us know that like Charlotte she had had a surgery at birth (3 weeks old) and another at 3 years old. She is having her third surgery--18 years after the second one-- this summer. We are delighted to have a new, grown up friend for Charlotte; some one who can swap stories about what it means to be just a regular kid with a patched up heart. And, after all of the sad truncus stories we've read about, we're terribly emotional about having a positive example for our kiddo.

One year ago...

I remember 3/20/2007.... All to well. Around this time, Ilene and I were sitting home, grateful and anxious. Grateful, because our wonderful surgeons (under the leadership of Dr. Carl Backer) had decided that performing Charlotte's surgery after being in the operating theater for 12 hours was not a great idea. Anxious, because Charlotte was going to have her conduit replaced the next day.

Of course, hindsight is 20/20. You all know the Poopsie's 2nd surgery went exceptionally well. More importantly, you all know that, one year later, Charlotte is just another amost 3-year old. (Not really, I think Charlotte is exceptional). Things have been going so well that Ilene had to remind me about 3/20/2007.

I am glad she did.
This is a very good night!
I hope you feel the same

Charlotte's "Diddy"

Reflux Chronicle: Feeding Team Check Up

Baking with Daddy while Mommy was in Philadelphia 2 weeks ago

Charlotte and I made the lovely drive to Milwaukee yesterday to visit with the Feeding Team at Children's Hospital of Wisconsin and see what they thought of Charlotte's progress during our trial of not using the g-tube.





Here's what I told them: Since January 4, Charlotte has had a cold (at least one), an ear infection, a-typical pneumonia (not confirmed by chest x-ray), a stomach flu, and roseola. She has gained (drum roll please) exactly the amount of weight they wanted her to gain. So, we've proven that she can get sick, lose appetite and weight, and get right back on track.





Official weight: 32 lbs.





Next steps: The tube will not out until we've seen this progress continue for 3 to 6 months. In the meantime, we will stop taking Charlotte's special food to daycare; so twice a week she will have typical toddler food with typical toddlers. The expectation is that she will either (a) eat it all because she's hungry, improving her chewing, attention span, and overall oral skills or (b) chew, horde, not eat a lot and then chow down at home, making up the calories. Either way it's a win for Charlotte and for me. For me because I don't have to rush around like crazy to get her of the door on Mondays and Thursdays.

Reflux Chronicle: Trialing No G-tube

Charlotte: Remember when Charlotte ate tomato soup and had a tomato beard?

Mommy: Yes, I do. I even took a picture.
Charlotte: Can I see it?


Charlotte: Ooooooooooo.....Charlotte had a beard just like Daddy.
(This conversation is repeated about four times a day)
*****************************

People always ask me how Charlotte is eating. Simple answer: Very, very well. For Charlotte, that is.

For more detail I could tell you about the volumes she's eating, how she chews so slowly it makes us crazy, or I could list the g'zillion foods she'll eat these days. But I'd rather just share some recent food stories that will become family legend:

Philippe and I took Charlotte to S'bucks last week. At first she didn't want anything. When she saw my hot chocolate, she asked for her own. Of course, we got her one. About 3 minutes after I handed it to her, she asked me to take it and give her a glass of water. Much to my surprise, the hot chocolate cup was empty!! In case you're wondering, that was 8 ounces and approximately 200 calories in 3 minutes. Seriously.

Goldfish crackers: Charlotte asks for them as a snack before breakfast! Yesterday, she had some in the car, accompanied by a cup of water. She then told us that there were fishies swimming in her tummy. Usually, she said, fishies swim in water, but now they're swimming in Charlotte's tummy!

My friend Esther recently told me a very sweet story about her daughter Sarah sharing a chocolate-covered strawberry that she had made in pre-school. As Charlotte and I re-told the story, Charlotte decided to make chocolate-covered strawberries. How? She dumped her strawberries into her chocolate pudding and then scooped it all up together, creating a complex texture that she handled beautifully. In this way she ate about 1/8th of a cup of fresh fruit (grapes, berries, mangoes).

Yogurt-covered fruit: The next morning Charlotte did the same thing with her yogurt, this time finishing nearly a quarter of a cup of fruit by plopping it in her yogurt, bite-by-bite.

And, the pièce de résistance of all this dunking? Last night she had chocolate-covered peas!
Many thanks to Sarah and Esther for all that inspiration!

Tonight while reading Iggy Peck, Architect (no, I will never skip an opportunity to plug the book!), Charlotte pretended to eat the pancakes on the page where Iggy builds "the St. Louis arch out of pancakes and coconut pie." True story.

Cardiac Update

It's been a long time since we've had a real medical or heart update here at Charlotte's Journey Home. That, of course, is a very good thing.

Charlotte and I visited Dr. Young, Charlotte's cardiologist, today. It has been 6 months since our last check up. I'm thrilled that Charlotte is doing so well, but we do miss seeing our friend Dr. Young more often. She's been a constant since our pregnancy and is very much a leader of Team Charlotte.

Charlotte flew through her exam with flying colors. She had an EKG and an echocardiogram. She started crying when I pulled the 10 EKG stickers off of her and cried on and off through the entire 45 minutes of the echo. It was very stressful.

The bottom line is this: despite being hysterical during much of the tests, her heart looked just fine. Dr. Young gave me all of the technical information about blood flow velocity and distribution--I used to understand it, write it down, and note progress. Today I nodded, noted that it was all good, and moved on. You see, while it all started with her heart, the reflux and eating issues have become so much more a part of our daily existence.

Anyway, Dr. Young originally said she didn't have to see Charlotte for a year, then nine months, then finally we decided six months. You see, we decided we couldn't wait nine months to see each other!

Then we came home and "got fancy." One of Charlotte's new best books is Fancy Nancy!

My Chicago Snow Angel

Reflux Chronicle: Another Hurdle Cleared

Charlotte had a terrible stomach bug this weekend. I'll spare you the details and say only that it came on quite suddenly and only lasted for 12 hours. By Sunday morning she was feeling well enough to grab a banana out of my friend Jackie's hand and eat about 2 inches of it. Today she ate nearly 600 calories of solid food and drank all of her Pediasure.

We had our follow up appointment with Dr. Newport today, checking in on weight to make sure that Charlotte had bounced back from last month's atypical pneumonia.

Charlotte weighed in at 31.5 lbs or 14.2 kilos. She's down only about .25 lbs. Since we weighed her today in only a diaper and we then realized that last time we weighed her fully clothed, and since she just had a tummy bug, Dr. Newport was not worried at all.

There is nothing worse than seeing your normally happy, bouncy toddler simply sit on the floor and stare into space like Charlotte did on Saturday afternoon. But, if she had to be sick, I'm grateful that we could learn from it how well she's doing without her tube!