Day 16: Camp Nom Nom

Day 16 of 30

It was too good to last. I knew coming to a children's hospital, where so many kids run rampant and share toys, we were going to come down with something at some point. Historically, Olivia is miserable when sick. Any congestion/drainage makes her throw up, especially when milk is given. Well, we are now sick. I've been sick with a sore throat and congestion for the last week, but she's never caught anything until Sophie came this weekend with her wheezy cough and congestion. Two seconds interacting with each other and BAM! Olivia is sick. Basically, any dairy she takes in makes her totally congested and want to throw up. One of my fears when I was debating whether to come was if she got sick, it would be a waste of time because she wouldn't eat.

Guess how wrong I was?

She eats despite the throwing up! In her meal, she was still willing to take a bite even after she spits up a lot. The difference in behavior is huge and I've come to realize, it's all my fault. Well, and Denver's. I won't take ALL the blame! It's how we react to her. We say things like "Oh no!" and give it attention instead of trying to distract her from it. We all zoom in, like a magnet, to frantically try to stem the tide. Here, the therapists all try to ignore it while she's throwing up and then act like it's no big deal. Not only does she stop faster, I feel like she doesn't threaten to do it as often. This seems to take the power away from her and places her in a new kind of situation. Even though she throws up, she still is asked to eat. It all sounds so heartless, but she really does try to work through the nausea, taking bites. Even Sophie won't do this!

Another interesting tidbit about our stay here: Welcome to Twin Central at Boot Camp. Besides our friends Sofia and Aliyah, there's a set of identical twin boys upstairs, a new set of twins across the hall from us, and one pair that's only here for a sleep study. Only one twin is in the program for each set. I love driving the nurses and doctors crazy on the weekends when there's two of each running around and confusing everyone. I mean, it's not hard to tell who's the patient -- one eats and the other doesn't! Apparently, it's still hard and doctors end up grabbing the wrong kids.

Before one of the feedings, I ended up talking to other parents and it felt just like a parent support group, which is just what I've been needing the whole time. It was as comforting as a wine with bubble bath at the end of a long day. Hearing other people's struggling with the same thing as you and perhaps they have just some way to make things better, even a minuscule.

The feeding team and I had another meeting, called huddles. They are so pleased with Olivia's progress. She's averaging 184 cals per day, increasing her calories all the time. If she gains weight this next time, she will have another tube feed cut. I must say, we've exceeded my expectations of her. I didn't know if we could go home, cutting out a feed, nevermind two feeds, halfway through.
 
Today, I got to feed her for the first time. The last few days I've been sitting in the room while she eats, but I never give her commands to take bites or administer the spoon to her. She was confused that the feeder was sitting in a different chair and mom was feeding. I was apprehensive since I had no idea how she'd take it. She hesitated slightly, but then ate it all anyways. I'm not sure if she's hungry, but I'll take it! I will say, it's a lot harder than it looks. I was controlling her bite size, her commands, her praise and video, but since it's so rigid and kind of unnatural, it was hard not to revert to old ways. And the pattern is 3 bites of food, 1 drink of milk (through the honey bear) and it's so easy to lose track when you've got so much going on. There's so much to remember!

Rules:
Use a neutral tone to give the commands
Don't react at all at bad behavior, throwing up or tantruming
Re-cue her if she doesn't respond/responds badly
Praise specifically for the action she takes
Don't have yes/no questions. Just a simple "take a bite" will suffice
Anything spit out on purpose has to be retaken
Whether or not she gets to play after the meal is solely dependent on whether she took her last bite/drink


Food Log:
3/5
Session 1: 46g
Session 2: 50g
Session 3: 26g (threw up 20g)
Session 4: 72g

Liquids Log:
3/5
Session 1: 17g
Session 2: 20g
Session 3: 19g (threw up 15g)
Session 4: 17g

Calorie Count: 315