Day 1: Camp Nom Nom

Day 1 of 30

We are in Dallas, TX at Our Children's House at Baylor. It's a pediatric facility that helps kids with trauma and birth disorders. They have a special intensive feeding program where kids are admitted in with the sole purpose of learning to eat, despite difficulties life has thrown at them. Olivia is such a kid. She's had severe GERD (reflux) her whole life and it just won't seem to go away. With all that throwing up, she's not so interested in eating. Who eats when they are nauseous and spilling their guts EVERY day, several times a day? Well, not this kid! She's diagnosed with "oral aversion" to food - any kind at all.

So she's been on the G-tube for 8+ months now, getting milk pumped directly into her stomach. That's no way to live. So she has been enrolled into the inpatient program, with hopes that she will come out of the hospital eating some food and can wean off the tube. I am staying with her and Denver and Sophie will come up on weekends.

Grandma buying me a "friend" at Bucee's

Today, we arrived at BOOT CAMP for orientation. We brought Sophie and Grandma for moral support. It was a whole bunch of nurses, speech therapists, doctors, occupational therapists, nutritionists and feeding techs talking at us about what would happen. We got assigned a room (with no bed for mama), told to use a shared toilet and communal bath (eeps!), and then spent the rest of the day being told how they were changing everything about her eating.

The program is intensive for a reason: they make kids do the ONE thing they hate: eat. All these kiddos are on tubes and they like it that way. Less work and less pain (for them). Boot camp says they eat 4 times a day and go to 2-3 therapy sessions. To us, that's pretty demanding for a week, nevermind a day. It's basically wake up (early), eat, therapy, eat, nap, eat, therapy, eat, bath, go to sleep. Oh, the buckets of tears that will be shed! And Olivia has nothing if she doesn't have crocodile tears.

Playing in the new bed before being separated

Today was just evaluation and getting stuff set up. They watched us feed her two times and made notes, or as I suspect, judgements on how we're doing it wrong. Here are a few things I can share about the experience so far:

- Communal bath sucks. We have requested to move rooms as soon as one becomes available.
- Lots of kids have it worse than us. She doesn't have a whole slew of medical/developmental issues, too.
- So many toys and play times! Sophie is gonna wish she had an eating problem.
- Kids are messy and dirty. Lots of kids mean everything is just gross. No matter that it's a hospital; it's always dirty.
- We miss our other half of the family. Denver and Sophie left and Olivia tried to follow and cried when she couldn't. So did I.
- A hospital provides beds and linens, but it ain't no hotel!

Naptime

Sandra catching up on sleep in the playroom while the girls are playing.

Hip baby

You might remember that I let Olivia watch Baby Einstein videos next to me sometimes while I catch a few more precious minutes of sleep.

Well this morning she was found watching Harlem Shakes videos online. I don't know how she even navigated to it. I mean, sometimes when you ask her to point to her nose, she's off the mark.

And you know what? I've never seen a Harlem Shakes video before.

My baby is cooler than ME.

Spying on daddy/daughter time

Ever wonder how your husband and kids interact without you? One night I decided to furtively look in on Denver and the twins in the playroom. Denver is trying to eat dinner and Sophie is after his food. Here are a few snippets:

- Eww, you smooshed the noodle!
- Gosh, Sophie! Ok, Hold on... No, no, don't touch!
- You're leaving a trail of noodles.
- Geez, I gave her a big bite and she spat the whole mouthful out into my bowl and asked for more.
- Ok, ok, ok now YOU want some? (Olivia)
- Hug daddy, yeah! Hug Olivia, yeah. Wait, no no no! (I assume some kind of biting attempt)
- Argh! (She was working on a piece of beef and couldn't break it down so she spat it on him.)
- Oh sorry, Olivia! Dropped congee on your head. That's what you get when you sit in daddy's lap when he's eating.
- Hey, hey, hey! That was almost a humongous mess. Ok, I think I'm just gonna let them watch Baby Einstein.

Twins - 34,964, Daddy - 0. Baby Einstein — always the backup babysitter or when you've had enough.

Day 11: Camp Nom Nom

Day 11 of 30

Grandma is coming to visit camp today! Olivia loves Grandma, so this is exciting. She stayed at the Ronald McDonald House in Dallas last night, which is just for families with kids in the hospital. I've seen those Ronald McDonald charity boxes in McDonalds all my life but paid little attention to it. After having kids in the hospital, I see just how many people have a heart to help us. Meals, snacks, baby food, toiletries, are just a few of the kinds of things donated. Grandma not only had a hotel-worthy room, but got three cooked-from-scratch meals. Dallas' House was particularly nice because it's brand new and modeled to look like a rustic ski lodge. It has playgrounds, meditation rooms, family kitchens, grills, huge yards, and laundry rooms. They try to think of every little comfort a family could have to ease the burden of being so far from home while a child is in the hospital. We're blessed that they had room for us, since they fill up all the time.

Great Room at RMH

Kitchen/eating area

We got another package today in the mail. This one is from Vicky, Ben and Fifi. It was a soft bunny for O and a manicure set for me! Could it be more perfect? Thank you guys for thinking of us and  knowing just what to get us!

Today was a strange eating day. She started out strong and then started decreasing in volume. By 2pm snack time, she was exhibiting some strange behaviors of refusing and acting out, especially with the Pediasure. She didn't want to sip it out of the cup for some reason. Then for dinner, she flat-out refused to drink Pediasure. Since the program is structured so that you don't move on to anything else until you take what's offered first, it became a testament of wills. In the 25 minute session, I think I started to get nervous around the 6 minute mark and it just got worse from there. When the meal was over, she was in a bad mood from not getting to watch any of her show. I was bewildered that she could eat so well in the morning to nothing at night. Our feeding tech says this was a "learning meal" when she learns that her holding out leads to no reaction on their part. Let's hope she's right.

Food log:

2/28
Session 1: 48g
Session 2: 32g
Session 3: 29g
Session 4: 0g

Liquids log:
2/26
Session 1: 48g
Session 2: 23g
Session 3: 27g
Session 4: 0g

Museum time

Yesterday we took the girls to the Houston children's museum because it was free family night. Two observations:

1. Every other person there understood Chinese.
2. Only my babies thought throwing balls out of the ball pit was fun.

First (real) haircuts

The girls' very first haircut happened outside of our control. Sandra and I came home from a date night only to find that the two grandmas that were babysitting had given them a quick trim because, they claimed, that their hair was in their eyes.

The next time they needed a haircut, we decided that we would have the honors of cutting our daughters' hair. See below for our first (and maybe last) try.

Olivia's turned out slightly better, mainly because Sophie was the guinea pig...



Yesterday we finally decided to take them to get a real haircut. Surprisingly they were both really well behaved. Not sure if it was the novelty of an unfamiliar place or if this is a foreshadowing of what's to come... It must have taken no more than 3 minutes to cut each of their hair, but each of them costed as much as my haircut! I think next time I'll have to give the bowl a try, at least while I can still get away with it!