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.
If a picture is worth 1,000 words, how much is a video worth?
Sometimes she even sings the alphabet correctly. Often, she sings IPO IPO. Perhaps she’s projecting something about her future?!
A quick view of Charlotte enjoying Virginia Beach. I took this with our Nikon digital camera, thus no sound. I don’t think you’ll need sound to get the gist.
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?
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.