Charlotte's Journey Home

Just a Regular Kid, Sort Of


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But, she doesn’t like hot dogs

Some of the ice cream actually gets in her, too!!

It’s been a long time since I wrote about Charlotte and food. But it recently occurred to me that it has been more than 4 years since we had to connect the tube to her tummy and set up the Kangaroo machine, more than 4 years since we’ve dealt with projectile vomiting, medical supply delivery, and the associated anxiety of not being able to nourish our kiddo. It’s been almost 4 years since we stopped logging calories and about 3 or so since we stopped consciously counting calories.

Charlotte eats. And eats. And eats. Occasionally the sheer quantity of what she eats astounds us: This morning’s breakfast began with a toaster waffle, yogurt, and fruit. Then she had an English muffin. Then another toaster waffle. For lunch, she ate two helpings of butter chicken and half a naan at an Indian buffet, followed by chocolate brownie ice cream. On Saturday, while other children were eating hot dogs (Kobe beef on brioche, it must be said), Charlotte was slurping up New England clam chowder and Rhode Island calamari (spicy). She is adventurous with food, able to find something she’ll eat on just about any restaurant menu.

Among her other favorite foods:

  • Panko-crusted cod with chipotle mayonaise

    • Anything with black beans (burgers; black bean and sweet potato chili; Brazilian-style black beans and rice)
    • Thai red bean chili
    • Lentil and artichoke stew
    • Artichokes with garlic aioli
    • Leek pie (made with Dijon country mustard, from The Greens Cookbook)
    • Pasta Puttanesca (made by her friend Sarah’s dad)
    • Chevre and hard-boiled egg on challah
    • Portabello mushrooms stuffed with spinach and ricotta (though she doesn’t like spinach alone)
    • Avocado, pineapple, strawberries
    • Salmon, cooked about any way I can make it
    • Swordfish grilled with salt and pepper; or with Thai marinade

    And, of course, some old standards like PB&J, nutella sandwiches, mac & cheese (especially from Panera).

    We’re actually surprised she likes these last few things as she ate them pureed and over-loaded when we had to create extra-high calorie food for her.


    Here’s the thing: Charlotte was tube-fed to SAVE her life. She had been diagnosed with “failure to thrive.” Post-heart surgery she didn’t have the strength to eat enough. After five months of an NG-tube, her little baby cheeks were ravaged by the tape we used to hold it on her face. She managed to pull the tube out. And even at five months, she hated that NG-tube so much that she managed to prevent it from being inserted. It was heart-breaking, but necessary. We “decided” to have a G-tube surgically inserted to save her from the trauma of the NG-tube. It was one of the best decisions we’ve ever made.

    So, you can imagine my reaction when I read the New York Times‘s piece, “Bridal Hunger Games” last Sunday. If you didn’t see it, here’s the gist: There are women so obsessed by being thin for their wedding day that they are willing to voluntarily have an NG-tube shoved down their nose into their stomach to provide only liquid nutrition. This “diet” allows them to lose weight fast. One woman lost weight too fast, so she took it out early. My heart does NOT break for her. And, there are doctors who are willing to use this life-saving technology to aid and abet these brides. I’m not sure if this is an extreme form of narcissism or a seriously warped view of beauty norms. Whichever it is, I was beyond appalled.

    As a critic of popular culture, I plan to step back and look at how this reality (and the reality shows about losing weight) line up with/contrast the new fat-as-normal of shows like “Mike and Molly”. What do these cultural phenomena say about beauty norms in the 21st century?

    As a mom, I need to figure out what I can do to help my child grow up with a positive body image?

    Right now, I don’t know the answer to either question. But, I’m fuming a bit less about what that article reports. And, I am still kvelling about all that Charlotte will eat.
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    Fettucine Alfredo

    At the suggestion of dietician extraordinaire Sara from CHOW I introduced Charlotte to fettucini alfredo this week. Charlotte would subsis on Spaghettios and Amy’s Ravioli if I’d let her, so we’re trying to broaden her horizons.

    What she lacks in quantitiy eaten she makes up for with exuberance! (She’s eating up to about 2 tablespoons, but she earns dessert by eating nicely, so we get the calories in….)


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    Just a Regular Kid, Sometimes

    Charlotte has been confounding us for the past month or so. As I reported in June and early July, Charlotte was eating beautifuly earlier this summer. She ate willingly, chewed nicely, and was beginning to eat like a regular kid. Or, at least the way we assum a regular kid eats.

    Then, sometimes in mid-July, she slowed down, started fighting us again, and seemed to backsliding. At the same time, she came down with what turned out to be the first in a series of three back-to-back ear infections. The first and last ear infections were double.

    Last week’s final hurrah crescendoed with one ear bursting, unbeknownst to me, and a nearly sleepless night. On Friday Charlotte had her first “sick day” from school. Though she didn’t have much fever, the ear infection and sleepless night knocked her out.

    The picture above was taken at around 10:00 a.m. Little honey–she climbed up on the couch to rest and cuddle. I walked away to answer the phone and when I came back she was sound asleep. I had to wake her up to take her to the doctor.

    Through it all she was sweet and cuddly, patient and kind. This last dose of antibiotics seems to have knocked the demon ear infections far away. How do I know she’s finally cured? She simply can’t get enough to eat!!!! Including her hot lunch at school….


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    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.


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    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.


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    Reflux Chronicle: Trialing No G-tube

    Charlotte will tell you that the most memorable part of her visit to the CHOW feeding clinic was that “Dr. Julie changed ‘Harlotte’s tubey.” That’s true. Our RN, Julie, did change Charlotte’s MICKely button since it hadn’t been changed since April.

    And for Charlotte, that probably was the highlight. She cried a little, but was mostly very brave.
    But what does a 2-year-old really know?

    The real excitement of our visit was this: We were given the green light to go for two months with no g-tube usage. In other words, what Charlotte drinks, she drinks. If she doesn’t make a full 200 mls. at a meal, we don’t “top her off” with the tummy tube.

    Given that prior to our visit Charlotte had gone for as many as 9 days without needing the tube, I went to Milwaukee ready to lobby for a trial. When the team offered it to me before I could suggest it, I was over the moon.

    We’re also supposed to start offering mashed foods in addition to pureed to begin to transition her to eating regular solid food.

    So, how is she doing? Since Friday she has drunk all of her “required” milk (600 mls.) and on at least one day she has drunk even more. Yesterday she got to 640 mls. She’s eating just beautifully, though I think she’s bored with her puree repertoire. Mashed foods are more of a challenge, though, because she loses focus quickly.
    Sometimes it is hard to remember how far we’ve come. Here’s what I wrote on January 8, 2006:

    Charlotte continues, seemingly, to lose ground on the eating front. She took only 1-2 ounces from each of 3 6-ounce bottles today. Just a few weeks ago she was finishing at least one bottle a day and taking 4 to 5 ounces from the others. Since yesterday she’s been refusing or gagging on her solid food, too.

    I feared that she would be come 100% tube-dependent.

    Two years later, I’m sincerely hopeful that we’ll be celebrating her birthday with a bandaid on the soon-to-be former stoma of her g-tube. Of course, I know she can go backwards as quickly as she has jumped ahead, but my fingers (and toes and ears) are crossed that she’ll be bikini-ready by summertime!
    p.s. The other terrific highlight about our trip was that we had lunch with a friend of mine from my Discover Card days who is now working at Harley Davidson. Col, it was so great to see you!


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    Reflux Chronicle: Days without…

    “‘harlotte is eating a sandwich just like Daddy do.” Mommy is fklemt.

    We have long been in the habit of counting DWOV (Days without Vomit). Recently, most every day has been a DWOV. So much so that we’ve lost count. Yeah, Charlotte occassionally coughs up stuff, mostly like anyone does with a cold. But when she has a cold, she’s more likely to vomit at meals or in bed. Last week’s cold involved only one bed change and a few small urpcidents. It was a huge milestone for us.

    So, what are we counting these days? DWOTT–Days without Tummy Tube. In the past 14 days, Charlotte has taken 100% of her calories by mouth (drumroll, please) a total of 9 days. On the days when we’ve used the tube, it has been for only 40 mls. and only once a day. So, 65% of the time she’s 100% orally fed. And the other days she’s 93% orally fed.

    Today at lunch she downed her peanut butter and jelly puree, chomped on some pretzels and blueberries, and then asked for a sanwich. She asked for it. And proceeded to eat about 1/16th of a pb&j sanwich on wholewheat.

    Where were we a year ago? She was eating about 50% by mouth and vomiting almost daily, going for only 3 to 5 days without vomit.

    2007 has been quite a year.