Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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.

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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”


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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.