Batting 800

Everyday we ask Charlotte to drink 900 mls. of Pediasure. Since her surgery, her typical intake has been between 650 and 750. The rest goes in by tube.

The exciting part, until today, has been that we only use the pump about twice a week. We’ve been able to do bolus syringe feeds. And her vomiting is way down–she’ll go 3 to 5 days at a stretch without a vomit. Solid food is a bit more iffy–sometimes she’ll eat 2 tablespoons at a time, sometimes nothing. Sometimes she chews, sometimes she hoards.

And then there is today, June 1, 2007. Remember it well. Charlotte drank 800 mls. total today. She finished 2 entire meals! And, she ate 3 tablespoons of pureed pineapple for breakfast.

A banner day!

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!

Feeding Update

On Wednesday, we went to CHOW for a sort of “emergency” intervention with Charlotte’s feeding. Basically, she has started pretending to gag. She forces the gag strongly enough to make herself really gag and then, sometimes, to vomit. Most of the time, you can tell a real gag/reflux episode from a behavioral episode, but not always.

I wanted to learn techniques to stop this behavior before she’s in hospital next week because I’m really, really afraid to lose ground on the feeding front in her recovery period. We’ve noticed that when she wants to and is feelign well, Charlotte can drink 7.5 ounces of milk and eat a tablespoon of food. We’re looking for tactics to help make that kind of meal the norm.

She forces the gag to try gain control over her feeding, to determine when the meal ends, or to get attention.

So, we got to CHOW and she ate like a dream. She dove into her salmon and macaroni and cheese with abandon. She drank all by herself from a sippy cup. (Now, I know most 22 month olds feed themselves, for the most part. But, remember, if you will, that Charlotte does not.) She was perfectly well behaved. Of course. I told the doctors ahead of time that I was sure she would be an angel for them.

When she was done, Dr. Long taught me some techniques to stop the gagging. Basically a) ignore the behavior or/then b) startle her by saying no (much in the same way you’d talk to a puppy about to pee on the floor). Verbally remind Charlotte to chew and swallow while stroking her cheek and throat. Keep the meal short, 15-20 minutes max. And praise, praise, praise when she feeds herself, chews a good bite, etc.

Hats off to CHOW. It’s been 4 days and we’re already seeing VAST improvement in her mealtime attitude. Her solid food quantities seem to have doubled since Wednesday and her milk intake is consistently 3-5 ounces in a meal.

Fingers crossed that we’ll see this continue after surgery.