Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Foot Fetish–A Feeding Update

Play piano! Yeah!

Recently on P2P, the wonderful support website for parents of tube-fed kids, a mom asked if anyone else’s kids liked pulling off their socks. Charlotte goes beyond that. She loves to pull of her socks, yes. But she thinks having her feet tickled and “nibbled” is about the best thing ever. We have a blast singing “Boogie-Woogie Piggies.”

So, you ask, how is this crazy blogging mama going to segue from feet to food? (Well, my brother is now asking why I have to use big words like “segue” and I’m sticking my tongue out at him!)

Bummer! I’m wearing tights, so I can’t take my socks off.

Charlotte has been eating terrifically well, for her. She averages more than 600 mls. daily of her 900 mls. minimum. And she takes almost a tablespoon of solid food each meal. It’s not a lot for a regular toddler, but Charlotte is not yet regular in the food department.

Last night she drank her entire dinner, all 240 mls. (8 ounces for you non-metric folks). And, how did I get her to do that you ask? Well, that is where the feet come in. Seriously. She wanted me to tickle and nibble her toes. So, for each five sips she took, I let her pick a toe for nibbling. We did this for a total of 2 ounces. I am not sure how she managed to eat between all those giggles!
On top of that, she’s been taking all of her medicine by mouth all week. Last night when Philippe tried to put her meds in her tube, she said “mouth” and insisted on taking her medicine like big kids do. True story.

I never stop moving.

Why all this progress? I don’t know. But she has started asking to see my “tubey” and asking us to “take out tubey.” I’ve started explaining to her that in order to get rid of her tube for good she needs to eat. Our daily conversation goes like this:
C: “Tubey out” (a bit whiney)
Me: “What do we need to do to take the tubey out forever.”
C: “Eating”
Me: “Are you going to eat like a big girl.”
C: “NO!” Big smile and giggle, “Hungry.”
Me: “Let’s go get breakfast.
C: “Eating!”
Eating indeed!


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Virginia Tech–Zichrono Livracha

I can’t help but pause briefly and ask you all to do the same. What happened at Virginia Tech has affected me more viscerally than I can explain. Maybe it is because I’m teaching on a college campus these days and back in touch with my academic friends. Maybe it’s because I’m a mom. Maybe it is because my eldest niece and my cousins are all on major college campuses. Maybe 9/11 is finally really sinking in for me.

Please take a moment to remember the victims of this horrible, horrible day. Their lives might have touched ours differently had they had the opportunity to fulfill their dreams. Tonight, their lives must touch us as we try to understand how something like this can happen in our United States and do what we can to be sure it never happens again.

May their lives be for a blessing. And may they rest in peace.


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This Photo by Karley

Many of you have heard us say that we are blessed to have a bevvy of amazing babysitters and friends who clamor (seriously) to hang out with Charlotte. In fact, Charlotte’s very first babysitter practically came home with us from the hospital, our wonderful friend & PICU nurse Samantha.

Karley has been sitting for Charlotte for over 18 months. While Charlotte is just now learning to say her name, the bond between them is clear. (And give the toddler a break, she can’t even say her own name!). What I have neglected to tell most of you is that Karley is a photography student at Columbia College. And she is seriously talented (okay, now, I was in the business for a while, so I get to say that).
Now, of course, it doesn’t hurt that her subject loves the “tamera.”
I’ve “stolen” this off of Karley’s Flickr site, so I can’t resize it. Follow the link to see the rest of the photos.


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MICkey button saga

The overdue promised update on the two recent replacements of Charlotte’s MICkey button:

As the cardiac surgeons prepared for heart surgery they removed Charlotte’s MICkey button and replaced it with a Foley catheter. I’m not really sure why. It seems this is just what they always do. Logically, Charlotte only needed “egress” from her stoma for a day or two, and she definitely needed the gases to be able to flow freely out. Also, the Foley eliminates any concern about an extension tube coming out or the button itself getting yanked by accident.

In any case, as soon as Charlotte was able to take food by mouth, our PICU nurse replaced the Foley catheter with a brand-spanking new MICkey button. We get a new one every 3-5 months and we were due.

The new button seemed just like the others-it was a little loose, a little twirly in the stoma, and occasionally looked like it was really sticking out far from her tummy (they’re supposed to lie pretty flat on the belly).

A week after the surgery, Charlotte’s babysitter Jenna called me at work, worried that the button looked like it might fall out. She saw a lot of leakage between the button and Charlotte’s tummy. Since we hadn’t really experienced that before and Jenna know what the button usually looks like, I had her tape it down and I immediately made an appointment with the pediatric surgery clinic.

At clinic on Friday March 30, Teri, our surgery APN, measured the length into Charlotte’s tummy (pretty weird—she had a measuring-tape type thing that she stuck into the stoma. I did NOT watch) and decided that the button we had was too long. We (Teri and I) now think this may have been a problem for a long time given that we haven’t taken this measurement in a year. She put in a new button and we were on our way.

All this took, by the way, 10 minutes.

I got home and found that it was very difficult to put the extension tube in or take it out. We had to really push on the thing. The whole weekend was rough—Charlotte didn’t want us to touch the tube because we had to fight so hard to get it in or out. But, we did have to take it out for a bath a few times. We lived like this until Wednesday when I got quite fed up.

So, during our Cardiology check up, I discussed it with the Cardiology APN, Debbie. After a quick phone consult with Teri, we realized that the button itself was likely defective and we made an appointment to have it replaced.

Charlotte and I left Cardiology, went home for nap and lunch and returned to the hospital. Teri replaced the button and we were, again, on our way. But, yes, we did spend ALL day in the hospital on Wednesday.

The new button is perfect. Hopefully it will last for several months!


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Heart Update

Charlotte had her first post-surgical cardiology visit with Dr. Young.

Dr. Young was quite pleased with her progress: She’s gained weight since her surgery (at the pediatrician’s last week she topped out at 26 lbs.). Her heart sounds good and there is only a slight “swish,” mostly the sound of blood through the conduit. No regurgitation sounds. And, her chest x-rays looked good.

Princess Charlotte getting ready for her x-ray.

Charlotte was a trooper–she smiled for the camera during her x-ray and most of her EKG. My secret weapon? The camera. Little Miss Diva-in-Training loves having her picture taken. So, we explain that the x-ray machine is a camera and so is the EKG machine.

Also, having a wonderful technician who thinks to have Charlotte help put the stickers and lead on. Pure genious.

Finally, a smile. That wasn’t so bad, was it Charlotte?


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23 months old

Showing off her scar on 4/4/2007, 2 weeks post-surgery.

The only “boo-boo” Charlotte is concerned with is the teeny-tiny scab/scar from the IV in the back of her right hand.

Imagine, you’re twenty three months old and you have already survived:

2 open heart surgeries

2 angioplasties

1 gastronomy tube surgery

23 months of reflux with related painful vomiting episodes

1 STARBand to reshape your head (yes, remember the helmet?)

You’ve seen more doctors and had more shots than most people see or have in 23 years.

Would you be this happy?

Seriously, this happy all the time.

And yet, Charlotte suffers so much less than so many children we have the privilege of knowing through our virtual community.

Today, as every day, we count our multitude of blessings. The past 23 months have certainly had their trials, but when we wake up to this smile every day, they all seem to fade.

Thanks for being with us on this journey.


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Today’s Episode Sponsored by the Number 735

Heart surgery? What heart surgery?

So, you’re thinking, “Okay, the heart seems to be fine. How’s the little whippersnapper eating?”

Typically, we feed Charlotte four times a day–breakfast, pre-nap, post-nap, and dinner. In order the meals are 240 ml, 180 ml, 240 ml, 240 ml (8 oz, 6 oz, 8 oz, 8 oz). Remember, unlike regular 22 month olds, Charlotte’s primary nutrition is still liquid, deeelicious vanilla Pediasure. She eats a wide variety of solid foods, from avocado to zucchini literally, but not nearly enough to sustain her.

We can hope that Charlotte will drink about 50%, maybe as much as 60% of her Pediasure by mouth. The rest goes in by g-tube.

Today, however, was another story. Before her nap, she drank a full 8 ounces!! And this is the meal that is usually a 6 ounce goal. For the day, she totalled 735 mls (out of a goal of 900 ml) by mouth. Yesiree–she took 81.6% of her Pediasure by mouth. And if she vomited, no one told me. (Kudos to Jenna for the 240!)

——————
After her return from the hospital last week, Charlotte was a bit clingy. I had some babysitter relief and had to bribe Charlotte with stickers to get her to let me leave. Today, knowing that I was going to work, she looked at me and said, “Mommy bye-bye. Play Jenna.” Then, when I told her that mommy and daddy were going out for dinner and Eve would be putting her to bed, “Mommy bye-bye. Play Eeeeeeeeee.” (In Charlotte-speak, “play” is pronounced “pay,” an irony not lost on me!) Yep, she pushed me out of the door. Big sigh.