Eating, Singing, Growing: A Charlotte Chronicle

Eating: Charlotte is still drinking the same amount as last reported, anywhere form 75% to 100% of all of her Pediasure. She’s increased her solid intake significantly, taking as much as 4, even 6 ounces of solid food at a meal. Recently, she’s begun to ask for “chewy” food. She has begun to realize that her food is pureed and she wants to eat Mommy and Daddy’s food or the “chewy” version of her food. Today it was sphagettios, last week hot dogs. We are loving this development. It does, however, present a challenge: She chews very, very slowly and simply cant take in any volume this way so it is an inefficient way to assure her caloric needs are met.

She knows how proud we are when she eats. A few days ago she told me to take her picture because she was feeding herself (I’ll post video here tomorrow.)

An eating anecdote: Last week Charlotte and I didn’t feel well so we had a very slow morning, pajamas until 10:00 a.m., no breakfast, etc. At 10:30 we went to brunch around the corner. Charlotte, whom I’d had on a liquid diet for a few hours, was HUNGRY. She practically grabbed the yogurt out of my hand and had shoveled most of it into her mouth by the time I got my coffee. Then she continued to nibble at toast and drink her milk while I ate my breakfast. She chatted, flirted with the server and bus boy, and burst into song. She was an absolutely dreamy date.

It’s hard to remember where we were with feeding a year ago. Here’s a flashback link.

For the record, she’s vomited maybe 3 to 4 times in the past 23 days. Last week it was due to either a cold or tummy bug and was hours away from any meal (so it doesn’t count in my book!). Prior to that, she’d eaten so much (voluntarily) that I think she simply had too much in her tummy.

Singing: Charlotte loves to sing. She wakes up singing. She sings all day long. She knows the tunes to all her favorite songs and will sometimes make up the words. She has a little repertoire of songs for which she knows some words and that she asks for by name (Mamma Mia, Elmo’s ladybug song, Hippo Hippopotome).

This past week she started singing words to songs she’s only hummed before: Old McDonald, Au Clair de la Lune, and Momma Mia (“mommy mia, here I go again”). Simply too funny.

Growing: At last weight check (Her flu shot on 9/29. By the way, she’d want me to tell you that she didn’t cry for the flu shot. Her daddy says she did. You decide) Charlotte weighed 30 lbs. She’s either holding steady or fluctuating plus/minus 100mg. Dr. Salem, pediatrician extraordinaire, seems unconcerned. We’ll see in 3 weeks what the CHOW team thinks.

My giant baby is more than 37″ tall. And as she tells me daily, “‘Harlotte not a baby anymore. ‘Harlotte a big, big girl.”

Gold Star For Charlotte

Do teachers still give gold stars for 100% scores? Well, Miss Charlotte earned a gold star today. She drank 100% of her Pediasure. No tube.

Other news–yesterday’s weigh in gave a weight of 13.7k (30.25 lbs). Per the pediatrician’s scale, that is a full half pound more than she weighed 2-3 weeks ago. We go back on 9/29 for a flu shot and weigh in. Stay tuned.
By the way, did you ever wonder what Charlotte is doing while Mommy is blogging? I snapped this about 10 minutes ago.

(Daddy, this one is for you; your last glance before bedtime.)

Not Quite a Feeding Clinic Update

Hey, Mom, put down the camera and lemme at that pizza and those bananas. At Wolfgang Puck’s in the AA terminal at O’Hare. Charlotte ate nearly all of a container of Gerber Organic Bananas and had (and chewed) about 5 bites of my pizza.

We had a flat tire in Racine and had to wait 45 minutes to help. The receptionist told us that the team wouldn’t be able to squeeze us in late (understandably) so, once repaired, we turned around and went home.

I’m trying to reschedule, if nothing works out for this week, our next appointment on 7/12 (the whole family, including birthday boy Daddy).

In the meantime, since you’re all dying to know how she is eating: Charlotte is eating like crazy. She’s averaging 2 to 4 tablespoons of puree a meal and getting to 180-200 mls. of Pediasure fairly consistently throughout the day. Midge, the dietician/nutritionist at CHOW tells me that this is 1,200 or more calories a day (her recommended diet is aorund 900 calories a day) and that, based on her most recent food journal, she’s taking 90% of those calories orally.

Charlotte and Nemo, the flying fish, get a tour of the cockpit from Christine, our fab flight attendant, after landing in Newark 2 weekends ago.

She’s starting to really open her mouth. I bought some The First Years Take & Toss spoons when we were out of town and they seem to do the trick.

But…she’s vomiting almost daily again. Frequently it’s fairly large (4-6 ounces). Yesterday morning with Laura she ate 2 tbls. of egg puree, 2 tbls. of applesauce, and 200 mls. of Pediasure. about 5 minutes after she finished, she vomited all of it back up. Maybe even more than all of it.

We’re working (via email) with Midge and Trina (our RN at CHOW) to make sure that Charlotte’s meds are the correct dosage for her weight and then to reduce her caloric intake in case she’s vomiting because she’s getting too much. Yep, you read that correctly! After 2 years of worrying that Charlotte was not getting enough nutrition, we’re finally concerned that she might be getting too much. Hurray!

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!

Let’s Try Again Tomorrow

Well, the cardiac surgeons’ first case proved to be more complicated than they had anticipated. Charlotte is upstairs asleep and scheduled as the first CV surgery case for tomorrow.

We arrived at the hospital around 10:15 a.m. Just after 11 a.m., an RN came to do Charlotte’s surgical intake (basically review the case history and take her temperature). Then we were taken to a private bed in the surgical waiting area to prep Charlotte (i.e., get her undressed) and talk to the anesthesiologist.

Tick-Tock. Tick- Tock. Noon O’clock.

Charlotte sat on the bed and played with her doctor kit. We read Olivia about 8 times. (It was her first Olivia experience and she loved it!! Of course, we Ian Falconer fans had no doubt she would.)


Tick-Tock. Tick-Tock. One O’clock.

Charlotte colored with crayons and danced to a Wiggles book. Charlotte got into the crib and feigned sleep. Mommy got into the crib, too. (Sorry, no pictures.) We tried to get her to sleep, but she couldn’t relax in the hospital environs. And she was hungry as she hadn’t eaten since Monday night save for 6 ounces of clear liquid.

Tick-Tock. Tick-Tock. Two O’clock.
Dr. Backer came to see us. He and Susie, the APN, were very apologetic and requested that we return “bright and ugly” at 6 a.m. Charlotte sucked down 4 ounces of apple juice in under 2 minutes and said, “Eating. Eating. Eating? Eating?” So, we took her to the cafeteria where she drank 2 ounces of whole milk and then stole all of her father’s chocolate milk.

Tick-Tock. Tick-Tock. Three O’clock.
We took Charlotte home. She said “Home” quite emphatically from the time we got into the car until we walked into the house. Then she let it all go and slept until 5 p.m.
Now, after a hearty dinner, she’s upstairs rolling around in her crib not sleep. Can you blame her? Her schedule is all goofed up today. But, she’s not complaining.

In fact, she hasn’t complained all day. What a trooper!