Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Sunday at our House

Believe it or not, Charlotte slept until 8:20 a.m. Did I use this time to get cracking on my enormous to do list? Did I prep a lecture, write a query about copy editing, or even do some laundry? Er…no. I set the alarm for 6 a.m. It awoke me from a disturbing dream (seriously, if I could do Julia Cameron’s morning pages, I’d have some amazing screenplays. I even had the privilege of taking a screenwriting with her in a previous iteration of my life. Geesh.) and I decided to let Charlotte be my alarm.
Oh well.

We had a quiet Sunday. We met our friends Esther, Dave, and Sarah at a street fair to watch Chicago’s Trinity Dancers. Charlotte was asked to step away from the stage as she attempted to join the show. Sarah stood at a respectable distance (though she is the one in focus in the picture–can you pick her out, Esther?).

My pals Sheri and Beth came for brunch. Charlotte was, I think, so excited about this that she didn’t fall asleep until nearly 1 p.m. and then managed to sleep through most of their visit.

I was hoping to report a great-eating, no vomit day, but, alas, we had a big vomit at dinner. (Charlotte did to her credit, finish an entire baby yogurt for breakfast and a quarter cup of pizza puree for lunch.)

On the vomiting front: I don’t blog about this often any more, but it’s gotten worse again. We’re seeing at least one significant vomit a day as well as many gags and mini-vomits. I’ve written a log of blog entries about this in my mind, but I loath writing about it. I am at my wits’ end and end every meal close to tears. Part of our CHOW strategy is to firmly tell her “no” when she gags. I have to yell at her when she’s in pain and unhappy because we can’t tell when it is reflux or behavior. So, in other words, I have to scare my baby and make her cry. It’s breaking my heart.
And what does she do? When I burp (yeah, I do occasionally burp), she pets my chest, looks concerned, and says “Mommy okay.” She thinks it hurts me to burp like it hurts her. She is the sweetest child I have ever known. And while I would do anything to change her medical circumstances, I would not do a thing if it would alter her personality.
Gotta go before the tears soak my keyboard.
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Feeding Clinic Update

Charlotte and I trekked to Milwaukee yesterday for our twice-monthly updates. Charlotte was excited about the trip and talked and sang the entire way. Bleary-eyed mom was glad of the company to keep my awake!

We visited with Dr. Long and Amy. This time, they went behind the one-way mirror and watched me feed Charlotte. I had thingy in my ear through which Dr. Long could give me direction. Charlotte was eating with gusto at first. Can you blame her? She’d had breakfast at 7 a.m. and it was 1 p.m. Also, she liked the new flavor–sloppy joe (think pureed Manwich). But, it was naptime and she was tired and eating is stressful. So, reflux turned into a massive, I mean massive, vomit, ending with bubbles of bile.

Dr. Long is whispering in my ear to clean her up, reassure her but not say “poor baby,” and keep feeding. Charlotte is in my face crying hysterically. Charlotte never cries, by the way, and she’s only hysterical when she’s funny. I had not slept in 2 nights. So….I finally said back to Dr. Long, “I can’t do this.” And she came in to feed Charlotte.

We talked about next steps. Basically, more of the same: limit meals to twenty minutes; offer 2 high-calorie purees; alternate five bites of food and five sips of milk; and, my favorite, try not to let her see my frustration. Hah.

We also talked about the possibility of consulting via webcam in a Telemed pilot they’re running. This would have allowed for weekly “home visits” because they understand that she behaves differently up there. Unfortunately, since we’re in Chicago we’re not eligible (they can’t practice over state lines, even electronically because they are only licensed in Wisconsin).

For now, we’re going back to monthly visits with nutrition consults in between via email.

Charlotte weighed (I think) 29.3 lbs, up from last time. I don’t remember her height.

Wanna know what dinner is really like chez Charlotte? Click here for 10 minutes of fun. This is how we’re working with CHOW between visits.


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In the Toe: A Feeding Clinic Update

On Daddy’s birthday the entire family drove up to Milwaukee for Charlotte’s bi-monthly feeding clinic visit. (An aside: Unlike our previous 2 visits, we made it there and back with no automotive events.)

Charlotte and Daddy. Or “Big and little Geyskens,” as I like to call them.

As we pulled into the parking lot, I asked Charlotte if she was hungry. Here is, more or less, our conversation:

Me: Are you hungry?
Charlotte: Yes! Eating!
Me: Where do you feel hungry?
Charlotte: In the toe!
Me & Philippe (trying hard not to laugh out loud): Where?
Charlotte: In the TOE!
Me: Oh. Where else? Do you feel hungry in your tummy?
Charlotte: No.

During her clinic visit, she ate more than a quarter cup of pureed taco and some pureed refried bean and to drink all of her Pediasure.

I guess that toe really knows what it’s talking about!

—————-

Drinking milk like a big girl. Charlotte loves her open cup. What a mess!

(Check out those biceps!)

And now for the serious part of the update (not that there is much serious about Miss Charlotte): The feeding clinic team is impressed with her eating. They expect that she might wean (or be weaned) off of the g-tube while only eating purees and drinking Pediasure. Chewing may take a while.

Dr. Long is still talking about in-patient weaning, though I dislike the idea more and more (especially during the summer). Frankly, I dislike it because Charlotte and I would be confined to the hospital for 2 weeks. Maybe that would be okay in December once my UIC semester ends, but on a gorgeous August day, yuck. Anyway, we’re on the wait list, so it’s not terribly imminent. Charlotte may make it a moot point if she continues to eat like a champ.

Her increased vomiting is something we just have to live with. Her meds are dosed appropriately for her weight. Basically, Dr. Long, Amy, and Julie (RN) said that if Charlotte isn’t upset by it and is still gaining weight, we should let it be. She’ll mostly likely grow out of it.

Charlotte’s official CHOW weight is now 28.8 lbs and she is 36″ tall. Three feet, baby! The weight gain is a bit low for a month, but we’ve had a stomach flu and a trip to Virginia, so we’ll reassess next week.


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Where’s Charlotte?

We’ve been on vacation in sunny, beautiful, laid-back Virginia Beach. We’ve had the great fortune to be able to catch up with old friends*, visit with family, and celebrate my mother’s upcoming birthday.

Charlotte loves VA Beach. Good thing, too, since Philippe and I cannot ever get enough of this place.
She’s eating like crazy–1/4 to 1/2 cup of pureed food per meal and often drinking everything she should.
To cut back on vomiting, we’ve cut the Duocal out of her Pediasure and have reduced the volume by 40 mls. per meal (with the blessing of our dietitian extraordinaire from CHOW).
She continues to vomit, sometimes small volumes, sometimes fairly significantly. We still think we may be giving her too many calories. Did you ever think you’d read that?
Stay tuned for our CHOW visit on Thursday.

*By “old” I am referring to the length of our acquaintance, not the age of our pals