Day 18: Camp Nom Nom

Day 18 of 30


A surprise came for us today! We got the cheeriest flowers delivered to our room! Thanks, Tony and Becky! It's so nice to know that people so far away still manage to be part of our time here. The sterile hospital room is slowly filling with homey touches.

Another fun day of eating and playing at boot camp for Olivia. She ate even more than before and she's feeling better. She threw up less today than yesterday during feeds, so we know that she's retaining her calories. The nutritionist even cut back another feed! That means she only has tube feeds 2 times a day and one big one at night while she sleeps. This is the whole point of coming here, so the progress is phenomenal for us. We're moving from one item to eat per feeding to three. She seems to love the variety, and come on, who doesn't love a good buffet? I know Sophie does!

She slept well again after we gave her tylenol. I'm not one to medicate my child, but if it really does help them get them through the night and doesn't throw up, it just might be worth it. I'll have to keep this trick in my back pocket.

While we've been here, we've met a lot of families who are also in the feeding program. Most of them have G-tubes, like Olivia, but there are varying degrees of eating aversions. No kid has eating aversion just because. It's always a side effect of something else, and those something elses vary wildly. Some kids, like O, had severe reflux, but many of them have tracheotomies at some point, along with heart abnormalities, severe allergies or lung issues. Breathing treatments are very standard here. But if they are here, they've gotten over a lot of their other, more life-crippling issues, and are ready to work on eating by mouth. Other kids have had surgeries that turned them off of food, such as brain surgeries for tumors and strokes, have Downs syndrome, or have had just freak accidents that paralyzed them or caused gastrointestinal issues.

But there's one kid here that was special from the get-go. She's around the twins' age, but I noticed had no parent or visitor here with her. Nurses and nursing techs take care of her. She has an NG tube and can't walk, so has to sit in a wheelchair. She's as sweet as can be but never seemed to be as developed, mentally, as the twins. Recently, a nice couple started visiting her and I thought they might be related to her. As I got to talking to them, I found that they are her grandparents and she's here because she was shaken as a baby and it caused her so much brain damage that she's more like a 3-5 month-old instead of a 1.5 year old. It's a wonder she lived through it, so they call her a miracle baby. Before the incident, she was walking, laughing and almost potty trained. I am so filled with anger at whoever could do such a thing to such a beautiful baby girl. My heart was already aching for her when I saw she had no parents, but I felt ripped when I heard of what landed her here. Please pray for her, if you are praying for Olivia, too. God would never abandon someone like her, but could only be cradling her in His arms. He blesses the weak, but this is one of the times I had to remind myself He's also God of justice and hates evil. I go to bed with a heavy heart and hug my baby just a bit tighter.

Food Log:
3/7
Session 1: 68g
Session 2: 65g
Session 3: 73g
Session 4: 76g

Liquids Log:
3/7
Session 1: 30g
Session 2: 31g
Session 3: 25g
Session 4: 30g

Calorie Count: 464

Day 17: Camp Nom Nom

Day 17 of 30

I'm a zombie today. Last night was awful. She coughed through the early part of the night, but by 2am, she threw up a few small puddles and one huge one. Olivia is so congested and she always refluxes milk at night. milk + congestion make a horrible combination in her system. The doctor on call was already in our wing, so he stopped by, per request of the nurse. Then the respiratory therapist came in. Then another nurse. We had a party on our hands. Each person wanted to listen to her chest, so I had her on my lap. Then they started arguing what they should do with her.

"She should have abuterol (breathing treatments)."
"No, it will make the coughing worse."
"She should have Tylenol to relax."
"Why? She doesn't have a fever."
"She should just be suctioned."

I was good and mad by this point and Olivia was starting to make confused noises. Make some good, professional decisions and let her sleep! In the end, we gave her some Tylenol after suctioning. She slept well after that, but I was still totally bushed in the morning. Our friend Sofia was also up and sick at that time, so I stuck my head in and told Mercy that she and I needed Starbucks the next day. It's so ridiculously expensive for coffee, but it's the only thing that keeps us properly motivated... and from crying.

I never did get my Starbucks, but at 2 am, you need that carrot. I slept whenever I got the chance, but it still wasn't enough. Today was my first full day feeding her. I was unsure whether she'd just think, "Huh, it's just mama. Maybe I'll try my tears." But nope, she hardly hesitated at all! She ate quite a bit in each session, but threw up in each, too. She's still congested and we figured out she needs to be cleared out before each session. But, no matter if she was throwing up, she still was willing to take a bite, sometimes while throwing up! I'm so surprised!

I'm my-kid-has-the-lead-in-the-Christmas-play proud of my Olivia! She's EATING, ya'll! She seems pretty satisfied with herself, too!

Food Log:
3/6
Session 1: 71g
Session 2: 55g
Session 3: 65g
Session 4: 61g

Liquids Log:
3/6
Session 1: 11g
Session 2: 12g
Session 3: 39g
Session 4: 29g

Calorie Count: 446!! That's more than half her daily needed calories. Granted, she threw up a bunch of those calories, but who cares!

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

Day 15: Camp Nom Nom

Day 15 of 30

Dear Daddy and Sophie,

I'm halfway through camp, but I am already missing home a bit. It was great to see you this weekend and it was almost like being at home. I didn't want to eat because I just wanted to play with you guys. But now it's Monday and we're back to the same routine, so I started eating again. It's still fun here and I've made lots of friends. I'm learning new things all the time, like how to finger paint and kick a ball. Guess what? Grandma sent me a present! I got my very own bubble! Mommy hung it up and I look at it all the time. You can see it when you come.

Love,
Olivia



Getting sick is no fun. But since it's a hospital, it's like solitary at a prison. They try to prevent the spread of infection and put the sickies in isolation. However, isolation is really hard for the one who is sick since it means no playing in the common areas, therapy comes to you and when you do come out, you are branded with a gown and gloves so people know to stay 50 feet away from you. Our new friend, S, has a fever and has to be cleared for 24 hrs before she can leave isolation.

Olivia is really buckling down and getting with the program. There were no more refusals and she ate great. There's no complaints of VitalStim anymore either. They've since moved the sessions to the gym when she gets her therapy, she's completely distracted playing with toys, watching other people get physical therapy and eating herself, that she's not complaining about the uncomfortable vibrations on her neck.

She ate so well today! She threw up a little bit while in the feeding room but overall, it was amazing how much she took by mouth. I'm really proud of her and can't wait to see how much more she can take.

Food Log:
3/4
Session 1: 64g
Session 2: 56g
Session 3: 51g
Session 4: 67g

Liquids Log:
3/4
Session 1: 28g
Session 2: 17g
Session 3: 13g
Session 4: 32g

Day 14: Camp Nom Nom

Day 14 of 30

It's Sunday, but that doesn't mean that Olivia gets a break. Her weekends are nearly just as full as on the weekdays. On the plate for the day are four feeding sessions and a speech therapy session. Today even felt like a school day. She and I woke up at 7:15 on the dot, got ready together and off she went to the waiting area to be picked up by the therapist for breakfast.

"Waiting for the Bus"

She once again had a small standoff during this morning's feeding. It took her 10 minutes to take her first bite, but once she finally did, she was off rolling and ate every spoon! After breakfast I dropped her off with the speech therapist for some Vital Stim treatments, and got a small breather for myself. An hour of free time, woohoo!! But before I could even finish my cup of coffee, that hour was up and Olivia was finished. Where did the time go?!? I don't know how you mothers out there ever get anything done! You all really deserve a trophy. Like. Daily.

By lunchtime, I was already spent. After each weekend, it would take me close to two days to recover. Now if I extrapolate that further, I can (maybe) imagine how tough it is on Sandra. Doing this day in and day out, for everyday of the week, for one month, without leaving the hospital, without ever going home, and be physically separated from your husband, daughter, family and community of friends...  I can't say this enough, I'm so proud of Sandra for being here to tough it out and make the sacrifice for Olivia. She is such a strong mother and wife!

Sandra's update:
Before heading to the hospital, Patricia, Jeff and I took Sophie and Evey (the Chao dog/baby) to the Dallas farmers market to get barbecue and look around. Our family loves farmers markets for all the fresh fruits and good eats, but also just to see all the different vibrant colors. Even in early March we saw an explosion of color, from flowers to fruits. Jeff stood in line for barbecue before the stall opened (it was one of those popular, sell-out-before-lunch kind of stalls) and the gals wandered around. There were several hangars of stalls, selling mostly fruit. Each had their produce stacked in very appetizing fashion and who were we to resist? Sophie picked our blueberries right away and we got some strawberries and avocados, too. I honed in on a roast corn stand, which I never pass up. I usually get my fix at the rodeo in Houston, but this year we're in Dallas the entire time. I'm incredibly sad that we can't go this year! Mutton Bustin'!! Sophie tried all the samples of fruit, and so did Evey. What a fun and relaxing Sunday morning.

"Are these real? I must touch each one!"

"Elote-style" Roast Corn

Food Log:
3/3
Session 1: 31g
Session 2: 31g
Session 3: 48g
Session 4: 58g

Liquids Log:
3/3
Session 1: 12g
Session 2: 10g
Session 3: 14g
Session 4: 17g

Day 13: Camp Nom Nom

Day 13 of 30

This was the third weekend in a row driving up to Dallas and we couldn't ask for better company! We had a car full of people to keep Sophie entertained - Patricia (Sandra's sister), Jeff (her husband) and Ori (Patricia's dental school friend). As usual, we made our weekly visit to Buc-ees per Sophie's request (2 hours in the car is about her limit). By the time we got to Dallas, we were all spent. She is one demanding girl.

Since Sandra and I don't get to see the other twin during the week, we usually do a "parent swap" for the weekends. Sophie stayed with Sandra at the Ronald McDonald House and I stayed at OCH.  I got there late, so Olivia went to sleep with mom there, but woke up to find dad. Sometimes I wonder what goes on in their little minds - if they're confused or know what's going on. But as soon as she woke up, she was in a cheerful mood and ready to start eating!

Today I got to see what Sandra had observed the day before, her standoff. We think it begun when she started taking pediasure (instead of water) by mouth, so we changed it up a bit and had the therapist feed the pediasure to her using a spoon. For the first session, it took her 15 minutes of the allotted 25 minutes and 3 different toys to get her to take her first bite. But once she got started she kept eating. The therapists assure us that there's nothing to worry about and that they see this all the time, but it was hard to ignore once the thought of her plateauing and regressing crept into our minds. That's always been the thing about Olivia, two steps forward and one step back. So we best thing we can do leave it up to God.

Sandra showed me this sheep that was in Olivia's bed. A chaplain at OCH had given it to her this past week and told her that many people had prayed over these stuffed animals for the children at the hospital. I nearly teared up when she told me. It made me think of all our friends and family that are also praying for Olivia. It makes us feel really blessed to know that we have all the support that we have. And to see that God is listening and answering them!

Thank you thank you thank you for everyone's prayers!!!


Food Log:
3/2
Session 1: 30g
Session 2: 39g
Session 3: 28g
Session 4: 21g

Liquids Log:
3/2
Session 1: 10g
Session 2: 12g
Session 3: 9g
Session 4: 6g

Day 12: Camp Nom Nom

Day 12 of 30

What a roller coaster of a day! We started out the day still holding out on eating. She didn't even want to take one sip of the Pediasure. It's what she throws up, so I'm sure that she associates it with the drink. And they've been making her take 3 sips, back to back, from a medicine cup. That's a lot for a kid! Then at lunch the feeding therapist started to give her food first to see if food is the problem. She ate the bites like a champ but held out with the milk again. It was definitely the milk.

Panic was definitely starting to rise up in my throat by now. It got to the point where I couldn't watch anymore. I wanted to give her water instead but our feeding team didn't want to regress since she drank it before all the standoffs. However, I felt like we were wasting sessions. Each session of therapy/eating is so important because it could potentially help your child that much more. Also each session is expensive. Our old therapy sessions at Texas Children's each cost something like $200. That was just our portion. You are paying for their expertise, so you want to wring every bit of benefit from it.

By snack time, the staff was fully concerned. We switched to feeding milk by spoon and the psychologist sat in the room to watch. Outside in the observation room, the speech therapist, another feeding tech and I all watched her eat. They were concerned that she would not only refuse the milk, but all spoonfuls because one of them contained milk. We all held our breath as she was offered milk. She took one bite from the spoon. And then another, and another. Whew! I think I finally breathed in deeply then. The speech therapist rushed off to put in new orders and change the menus. She ate the rest of the meal, but still gagged a bit on the milk. It led to her throwing up some, but the psychologist noted that she ate her bites of food right after it. Seems like any little gag triggers the throwing up and she can't stop it. But at least we don't have a behavioral bulimic on our hands.

I feel so relieved. And now I can feel drained. It was the hardest day in the program so far and I hope there's none worse while we're here.

Denver and Sophie are getting in tonight, along with Patricia and Jeff. We have been waiting all week for them, especially after the last two days. I can't wait for the calvary to arrive.

Food Log:
3/1
Session 1: 0g
Session 2: 5g
Session 3: 42g
Session 4: 46g

Liquids Log:
3/1
Session 1: 0g
Session 2: 0g
Session 3: 9g
Session 4: 8g