Thinking of Truncus Arteriosus and Other Heart Babies Today

Our journey began, as you know, in January 2005 when we learned that our unborn baby, then named “Sprout,” had a rare heart condition called Truncus Arteriosus. We tried finding information and support on the internet and simply came up empty-handed. Even the national organization Mended Little Hearts didn’t yet have a Chicago chapter.

So, I started the blog. I wanted to share our experience, which I had chronicled for months in emails, with any parent who might benefit from it. I wanted to write a memoir, Charlotte’s memoir. And, yes, I hoped that maybe a publisher might find me.

As Charlotte’s heart healed beautifully and without complication, her journey quickly became one through the discomfort of reflux and feeding issues, with a minor detour to plagiocephaly (remember the helmet photos?!).

And now, if you read the comments, you’ll find that parents of Truncus Arteriosus babies have found us. And one Truncus Arteriosus “baby” herself. I’d like to introduce you to them.

Jessica is 21-years old and lives in Michigan. Today, as I write this, she is having her third TA repair. I’m in awe of her, actually. We have been told that by 21, Charlotte may have had 4 surgeries. Jessica’s valve and conduit have lasted for 18 years! As she waited for her pre-surgery exam results, Jessica wrote me a beautiful email about the things she was scared about, things Charlotte should know before her next surgery when she’ll be old enough to understand. And the things she’s looking forward to. Jessica’s poise as she awaited surgery moved me–she was thinking about being nude and exposed, with all her private bubbles out as she said. She’s done a lot of research, so she was also thinking about all the tubes and wires that will greet her when the anesthesia wears off tonight.

As we light our Shabbat candles tonight, we’ll be thinking of Jessica and wishing her quick and peaceful healing. When she’s well enough, Charlotte is going to visit her in person so they can compare scars.

Caden’s Mommy Ashlea found my blog today. I’ve just spent Charlotte’s naptime reading Caden’s story and marveling at Ashlea’s profound prose. Caden’s 18 months have been one mircale after another. You can read his story on his blog. I recommend you start with Ashlea’s essay, Caden Konecny: Caden’s Feet. I wish I’d written it.

And finally, but not least, is Josh P., Francie’s son. Josh is not a TA baby; he has complex congentinal heart disease and recently had a Fontan procedure. We’re hoping that he is healing well and that his parents and little brother are doing well, too.

Ashlea has created a list of links to other TA babies. Please visit them.

And keep Josh and Jessica in your prayers.

Hurray for Underpants!

I won’t bore you with potty training details. I think most of my readers have “been there, done that.” I’ll just say this–we tried to avoid Pull Ups and had nearly two full days of disaster over Memorial Day. So, we caved and went with Pull Ups. Charlotte got the knack of it pretty quickly and her camp counselor said it was okay to send her to camp, and even pre-school, in Pull Ups.

Then Janet, day care provider extraordinaire, asked me to send Charlotte to her with underpants because, and we all agree, Pull Ups are really, really hard for kids to pull up and down themselves. They get even more difficult to maneuver as the weather gets warm.

So, always one to take Janet’s advice and her unsolicited help, I let Charlotte pick out a pair of panties (Elmo, of course). She did great. Today she was at home with me and we had day #2 of underpants success.

Under that dress is an Elmo potty seat. Really.

As Elmo and Prairie Dawn say in Charlotte’s favorite video, Elmo Potty Time, “Hurray for Underpants”!!

What is Charlotte reading, you ask? Why, her favorite “reading room” book, Feed Matisse’s Fish. She loves the cadence of it, “Tick Tock, it’s x o’clock, time to xyz. Do this do that, what a busy day.” She knows it by heart, of course. The most fun is when she turns her own day into the book “Tick Tock it’s 12 o’clock, time to eat my lunch, climb the chair and click on in, what a busy day.”

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.