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)
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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!

Charlotte Reads: Bouncing, Dancing, Galloping ABC

Click on the title of this post to hear Charlotte reading one of our favorite ABC books.

We originally picked up The Bouncing Dancing Galloping ABC at the library for one reason--the author's name is Charlotte Doyle. For a long time, Charlotte referred to it as the Charlotte book.

Now she knows it by heart. Occasionally during the day she'll refer to it by acting it out. For instance: Charlotte will spin, get dizzy, and fall down, declaring, "Charlotte dropped herself." Why? Because "D is for dancing and dizzy and drop," of course.

I like this book for its original take on the alphabet. This alphabet is packed with action, with all the letters illustrated by verbs. The rhyme is light-handed, but catchy enough to remember. We can recite this alphabet all day long. (And, yeah, we do!). Julia Gorton's illustrations are colorful, playful, and simply full.

This book truly celebrates the alphabet. What a great way to start reading!

Reflux Chronicle: Passing the First Hurdle

Look at me! I can walk in Mommy's boots! (Picture by Karley B.)

We are nearing the one-month mark of our g-tube free trial. For the first 20+ days, Charlotte met all of her benchmarks, consistently averaging enough calories (combined fluid and solids) not need the tube.

Additionally, she has begun to run to the table at mealtime, ask if she can carry things to the table, and feed herself the first several bites if she's really hungry. Part of this behavior is evolutionary (it was beginning at the end of last year).

Partly, I attribute it to another milestone in Charlotte's life: she started daycare on January 7. Two days a week, while I teach, she is the warm, loving environment of a home daycare provider in my neighborhood. Janet and Ramie, her assistant, take care of 7 to 10 children (depends on the day), all under 3 years old. Most of the children seem to be within 6 months of Charlotte. So, she has some peer behavior modeling, different adults working with her, and a real sense of achievement. We LOVE daycare! (More on that in a few days.)

The first hurdle: As we got to week three of our tube-free trial, Charlotte came down with a cold which then turned into a cough. Her pediatrician diagnosed her with a-typical pneumonia and put her on z-pac antibiotics. Not surprisingly, Charlotte was pretty disinterested in food for about a week. Even the usual lure of chicken soup "with letters in it" didn't perk her up. We didn't force it, let her eat what she would, and tried to pack high calories into her low volume.

This is the test--can she bounce back after an illness, eating enough food and ending the two months with the appropriate weight gain. (In other words, if she loses weight during an illness, does she gain it back as effectively as "regular" kids?)

Within 3 days of antibiotics she was eating eagerly again, though her liquid volume is still down a bit.

And, according to our bathroom scale, she didn't lose an ounce! We have an "official" weight check with the pediatricianon 2/12.

My Honeys

I've been terrible about updating the blog. I will get to a full update this weekend to let you all know how our no-tube trial is going. In the meantime, check out my "Big and Little Geyskens." Ain't they just too cute?