Who Will Hold My Heart? A Heartiversary Tale

I was more likely to play school than to play house. Had I imagined motherhood, it would not have begun with cardiac surgery. Or with wires, tubes, a ventilator, medicines, oxygen, daily x-rays, and ultrasounds. I would not have been on first-name basis with my daughter’s cardiologist and her first babysitter would not have been our favorite PICU nurse. My imagined life with a newborn would not have included pumping breast milk eight times a day while a machine fed my baby. Or sneaking into her room to give her medicine and food via a tube while she slept through the night. Or fighting with a one-year-old get her to drink half an ounce of milk. Most of all, however, I think I could never have imagined that it would take nearly a year for me to fall in love my child. Or, that once I did that love would be the fiercest and most complex emotion I’ve ever felt.

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Chocomolic

Several weeks ago Philippe and I were invited to friends’ for dinner. I volunteered Philippe to make his famous chocolate mousse for dessert. Charlotte was delighted to help. I think the pictures speak for themselves.

While cleaning up, Charlotte had a chat with Bamma. Bamma asked Charlotte if she was, like Bamma, a “chocoholic.” Charlotte said, “Yes, I’m a chocomolic.”


I can’t make this stuff up. Really.

A Role Model?

“You’re my friend, Taylor.” Clearly! And, no, Taylor is not a shrimp; Charlotte is a giant.

Last night Charlotte’s good buddy Taylor came over for a playdate and dinner (with her parents, of course). She quickly declared my chicken chili delicious (it was) and ate about 3 bites.

Then, Taylor’s dad was trying to get Taylor to eat a bit more. [Aside: This always makes us feel good because it means we’re not the only ones who have to push our kid to eat.] So, I said, “Hey Charlotte, show Taylor how you can take a big bite of soup.” She said, “Sure. It’s yummy.” And, damned if she didn’t shovel another spoonful, chock full of chicken and veggies, into her mouth.

In the end, Andy definitely got Taylor to eat a lot more than Charlotte, but I was stunned.

Fettucine Alfredo

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

Feeding Clinic Visit

Charlotte with her favorite monster last Sunday. She’s still talking about her celebrity encounter!

Charlotte and I visited Sara, her dietician, at Children’s Hospital of Wisconsin today. Charlotte’s “official” CHOW weight was 15.3 k, or precisely what it was back in June. While her vertical growth (she’s up to 3 feet 5.75 inches) is steady, Sara is a tad concerned that her weight gain is flat. Charlotte has gone from 94% ideal weight for height to 90% ideal weight for height.

Charlotte did have 3 ear infections in about 6 weeks (August through September), followed by a 24-hour “summer fever,” all of which dampened her appetite in the past two months.

I’m hoping that now that she’s healthy (save for a sniffly nose), she’ll start chowing down again. But, we’re back to needing to be vigilant about caloric intake, adding calories where we can, and worrying about food and weight.

On the bright side:

  • We don’t have to worry about reflux. Even with her last ear infection and her current runny nose, we’ve not seen any gagging or vomiting.
  • She is in the 97th percentile for height for her age (not quite 3 1/2). To put it another way, she’s average for a 4 year old (and in our experience, she’s as tall or taller than most 4 year olds we know!).
  • Sara loved the broad range of foods Charlotte will try or will eat.

Another Milestone

I finally had the home healthcare company retrieve the Zevex pump and all of its accessories. We’ll miss our friendly delivery man, Vince J., but we won’t miss the pump.

Charlotte’s eating is very inconsistent, which I suppose is pretty “regular” for a toddler. When she eats well, however, her volume is stil pretty low for a kid her age.

We did have a major meal on Friday night–Charlotte ate 5 (!!!!) raviolis, all by herself. While volume is important, we know we can make up for calories with our high calorie purees and dessert (the kid is definitely ours–she loves dessert). So, we’re really working on self-feeding as that will be the key to success in school.

Eating Update

The tummy tube is, famously, gone since June 5. When asked to show someone “What’s new?” or “What happened in Milwaukee?”, Charlotte promptly rolls up her shirt. Or, she does it with a great deal of drama, rolling up her dress slowly so that the observer can first think that the big girl underpants are the big news, then going for the “reveal.” As proud as we are of Charlotte, she is more proud of herself.

And she should be.

So…you think Charlotte is now a regular kid, right? Mealtime is easy or hard, like it was (or is) with your toddler? She eats or she doesn’t and makes up for it the next day.
Would that it were so.

In May and June, Charlotte fed herself with regularity, and much encouragement. Throughout July this behavior deteriorated. I began to feed her more and she began to feed herself less. Mealtimes devolved into time outs, yelling, bribery, and utter frustration.

At first, I chalked it up to Charlotte being tired from being at day camp all day (more on that soon, I promise). We instituted a “Happy Meal” Sticker chart–for every meal in which Charlotte feeds herself (for the most part), within a 25 to 30 minute period, and behaves pleasantly, she gets a happy sticker. For very 10 stickers, she gets to watch 30 minutes of a DVD. [We say “happy sticker” because Charlotte really can’t say “smiley.”] This worked for a few days.

After camp, however, we realized that camp had little do with it. Further research proved that Charlotte feeds herself just fine when she is with her babysitters. But for mom and dad, no way.

Last Friday, I lost my mommy cool. Completely. So we instituted a new rule–Feed Yourself or Don’t Eat. She gets 25 minutes, lots of encouragement, help getting food on the fork or spoon if she needs it.
Guess what? Charlotte has had about 5 days of happy, happy eating. Mom and Dad still don’ look forward to mealtime, to be honest, because we’re never sure what’s coming But, we’ve been pleasantly surprised and have had some lovely family meals.

Feeding Clinic Update

This entry really should be titled “The Best Day Ever.” Why you ask?

Well, it has nothing to do with the 2 1/2 hour drive to Milwaukee or the nearly 3 1/2 hours it took us to get home.

Here are the basic stats of our visit.
Weight: 33.75 lbs (15.3 k)
Height: 40.5 inches (102.2 cms)
Yes, she is off the charts for height. In fact, she hits the charts at average for a child of 4 years and 3 months.

But, these stats are not the reason this was the best day ever. This is

“Bye bye, tummy tube.”

Yes, in that little specimen cup, Charlotte is holding her MICKey button, the last one she had in her tummy. Right now she sports a piece of gauze over the stoma. The stoma (or hole) should close up within 2 weeks.

We’ve also stopped the Pepcid as Charlotte’s reflux seems to be resolved. Further, we’ll be dropping one can of Pediasure a day, substituting it with whole milk, with the goal of getting her to whole milk with no additives by the time she starts preschool in September.

We’ll follow up with her surgeon in Chicago if the hole doesn’t close itself. After that we’ll go to Wisconsin in September to consult with Charlotte’s dietitian, Sara. (Every toddler should have their own dietitian!). In December, we’ll see the whole team.

As you might imagine (or not if you’re my brother!), I really have no words for the emotions I’m feeling right now. The champagne is in the fridge. It’s a good bottle, Veuve Cliquot, that Philippe’s EVP gave him at holiday time. We were saving it for a special occasion and we can’t think of anything more special than this.

The best day ever. Ever. Ever. Or, at least in the history of feeding Charlotte.

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!

Reflux Chronicle: Losing Count

I have officially lost count of the number of days without vomit. We’ve definitely broken Charlotte’s world record. We’re not counting little bitty urps (wet burps, really).

Yesterday we did not use the feeding tube at all. If I remember correctly, we didn’t use it on Saturday either. And I cannot remember the last time we took the Zevex pump out of the cabinet.

Dare I say that the reflux is behind us?