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.

It's Official, Charlotte is

a big girl now. And not an inch too soon. When she stretched out on her crib mattress after we took the crib apart yesterday she had about 2 inches to spare at either end.

She hasn't quite mastered the big girl bed yet. I just found her parallel to the foot board at the foot of the bed and had to move her. Philippe had to rearrange her last night, too. It's a good thing she's not a light sleeper because we just pick her up and move her!

The bed is full size because we had a convertible crib. So while she looked huge in her crib, she looks tiny in her big big girl bed. But so peaceful.

And when she's awake, climbing onto the bed and bouncing on her bum is her new favorite activity.

And as big as she is, Bubba is always there to help her sleep!

The Joy of Cooking

With all due respect to the classic cookbook....

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.

Cardiac Update

Cardiac Update:
Charlotte had her semi-annual cardiology appointment today. (I like to call this the "Remember, she's a heart patient?" appointment. )

She weighed in at 15.4 k and measured 41 inches (104 cm). Her electrocardiogram (EKG) was normal despite the fact that she cried and coughed through the whole thing.

Dr. Young wants to see her in about 9 months. She'll have to have an echo and a 24-hour halter monitor (portable EKG). So, now you know our plans for spring break!

And that, my friends, is the Cardiac Update in toto. Did you ever think it could be so short?

Now for the Cardiac Appointment Hi-Jinx Report:
Charlotte tried so hard to be brave during her EKG, but the minute Amber started putting the leads on her legs she began to cry. Crying led to flemmy coughing due to her ear infection. She fussed the whole time.

Once she was calm after the test, we did some coloring. Charlotte stopped coloring and put the crayons in the crook of her bent knees. She then proceeded to tell me that we were pretending the crayons were EKG leads. "We have to put them in kind of slowly," she said "and then pull them out fast." Over and over and over. The backs of her knees are covered with blue crayon polka dots.

Right now she's listening to my heart (with her real stethoscope) and watching Finding Nemo (for the umpteenth time).

My Cheeky Three-Year Old

Caption contest: Add a comment with a caption for this fabulous photo (watch out Fancy Nancy, here comes Charlotte!). The winner will get a copy of this priceless photo.

True story:

At breakfast, I had finished everything but my coffee and a few bites of my muffin (carrot-ginger, if you must know!). Charlotte was eating like a slow-poke (as usual) and I was trying to cajole her to eat her yogurt. So, I said, “Look, I finished my yogurt,” and I took a sip of coffee. She looked at me and said, “Mommy, I appreciate that you are thirsty, but you really need to finish your muffin.”

I nearly fell off my chair hearing her repeat to me the things I say to her to get her to eat. I’m sure she doesn’t truly understand what she’s saying. And she can barely pronounce “appreciate.” I'm learning more and more what I sound like as a parent as my little parrot role plays with me. Sometimes it's not terribly flattering and I try hard to retool my approach when I hear things I don't like being repeate. Sometimes it's just unbearably funny, like this morning.





Another true story (written here with Philippe's express permission):

I said something really fast and she thought I said “I’m Baxter.” (Baxter is my brother's dog.) And the following conversation ensued:

Me: You thought I said, “I’m Baxter”? And that was so funny?
C: Yeah
Me: But, I’m mommy, I can’t be Baxter.
C: But Baxter can be a mommy one day.
Me: Not really, because Baxter is a boy. Do you think you might grow up to be a mommy?
C: No.
Me: No?
C: No, I’m going to grow up to be a daddy.
Me: How are you going to do that? Daddies are boys.
C: Well, I’m going to grow up to be a big man. I’m going to grow my hair big.
Me: Oh?
C: Yeah, I’m going to grow my hair big so I can have a beard. And I’m going to grow a big head. Because Daddy has a big head, so I’m going to grow a big head, too.


At this point I was laughing too hard to remember the rest. Note—I did not prompt any of Charlotte’s comments. And at no point in this life on earth have I talked about the size of Philippe's noggin (which, contrary to popular opinion is no larger than average, we've measured and compared!).

Charlotte the Sand Crab

Charlotte spends about 8 months a year bundled up in a ski parka, boots, hats, mittens, etc. She seeks out snow to throw herslef into and make snow angels. So, what's this snow bunny going to do while at Virginia Beach?

She makes sand angels, of course!

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.