Day 23 of 30
This is the absolute worst day that we've had at OCH, hands down. None of it was really our fault or even had to do with feeding directly, but it sure did make Olivia eat poorly. It all started overnight when the night nurse switched the rate and dose settings on her pump and she got virtually none of her feed. She woke up at 5:30 AM hungry and dehydrated. I felt terrible for the girl because she asked for water to drink but was so tired she wanted to drink lying down. It just resulted in her choking and kept her up until we had to go eat. By then, she wanted a nap, which of course she couldn't have, but she was starving so she ate a lot. She only got to take a one hour nap before she had to eat lunch. Both meals had a ton of meltdowns. She didn't nap before snack, so that went poorly, too. She finally got to sleep after snack.
She could have slept for 2 hours, but was rudely awakened by a janitor, who wanted to empty our trash and barged in. Olivia couldn't go back to sleep so we decided to take a bath. The communal bathroom is right next to our room, which is convenient for us. When we were done, I was holding her, wrapped in towels. I opened the door and stepped out, but not two steps later, I tripped over something and went flying! It was a cleaning cart that was parked right outside our door, blocking the bathroom. The janitor had left it there when she changed our trash. I couldn't see it because it was that close to the door and I had the kid in front of me. We both fell to the floor and I landed with her still in my arms, but felt her head knock the floor. I was so scared I'd caused permanent brain damage to my precious baby and could only sit there cradling her while she cried.
Nurses, techs came running and picked the two of us up. She was thoroughly checked out and there was no bumps, scratches or blood to be found on the kid. I was never so relieved in my life but was still shaking from what could have been. It was complete chaos as we calmed and dressed O, the janitor, who left the cart, returned to poke her nose in to see what happened and got kicked out. I finally registered that my foot was hurting from where I'd tripped. I was in no state to feed her so sent her off for our regular feeder to take care of her.
A ton of people stopped by to hear what happened and it was decided that the hospital was liable for the whole accident. After giving my statement several times and icing my foot, it finally calmed down. Thank goodness my cousin stopped by and we ordered sushi delivery, which is almost as good as wine.
After Olivia went to bed, I decided to go to the ER just to make sure I didn't break anything. 4 hours later, I could confirm that nothing was broken. It was a loooooong day, but I'm so glad that we aren't hurt, just a bit shaken up.
3/12
Food log:
Session 1: 81g
Session 2: 29g
Session 3: 30g
Session 4: 34g (threw it all up)
Drinks log:
Session 1: 30g
Session 2: 45g
Session 3: 33g
Session 4: 61g (threw it all up)
Tuesday, March 12, 2013
Monday, March 11, 2013
Day 22: Camp Nom Nom
Day 22 of 30
Hot Diggity Dog! We had a lot of fun visitors today. They all had tails, paws, slightly bad breaths, but loads of patience. Therapy dogs came in a large herd with their owners to our playroom. The kids were absolutely delighted/scared witless. Olivia was half scared, half intrigued by so many dogs. She was definitely excited and kept repeating "Wooh Wooh," which is the howl/bark that Cody makes. She went after the tails because Cody, being a boxer, has no tail, so she's unfamiliar with what keeps moving around. She did pet/slap them a few times but was scared and wanted to be held.
They
also had cupcakes in an ice cream cone during Childlife. Kids were
supposed to decorate with frosting and toppings. Guess who had no
interest at all? Oh well, it's therapy for mommy! And this time, I got
to actually taste what I created and it was not bad at all!
She's eating less and only drinking only ok. She's just not pulling
much out of the honey bear bottle. We're thinking of new strategies. I
feel like her therapists are always trying to outsmart her. And it's
actually kind of hard. She learns so quickly and finds new ways to get
out of eating and drinking.
Her weight on Friday showed a huge jump up - almost 21 lbs. Today she lost a little but it's still up, so they are cutting another one of her feeds in the day time. She's down to one feed during the day! I am just amazed at the difference. From 4 loooooong feeds during waking hours to one short half hour during the day. Perhaps I can actually do other things now besides watch her while she feeds. Like take them to the park without worrying about her always throwing up. I guess we do have to spend more time actually feeding her food, but it should be better after we come home (start praying now!).
3/11
Food Log:
Session 1: 47g
Session 2: 61g
Session 3: 60g
Session 4: 33g
Liquids Log:
Session 1: 21g
Session 2: 26g
Session 3: 24g
Session 4: 10g
 |
| Playroom filled with dogs and patients |
Her weight on Friday showed a huge jump up - almost 21 lbs. Today she lost a little but it's still up, so they are cutting another one of her feeds in the day time. She's down to one feed during the day! I am just amazed at the difference. From 4 loooooong feeds during waking hours to one short half hour during the day. Perhaps I can actually do other things now besides watch her while she feeds. Like take them to the park without worrying about her always throwing up. I guess we do have to spend more time actually feeding her food, but it should be better after we come home (start praying now!).
3/11
Food Log:
Session 1: 47g
Session 2: 61g
Session 3: 60g
Session 4: 33g
Liquids Log:
Session 1: 21g
Session 2: 26g
Session 3: 24g
Session 4: 10g
Saturday, March 9, 2013
Day 21: Camp Nom Nom
Day 21 of 30
I got to feed Olivia three more times today before we drove back. Given that it was Daylight Saving Time, I was running on fumes. It was so hard to muster up the energy to give the encouraging praise after each bite. I'm already a bit subdued in expressing my emotions, so you could imagine that today Olivia probably thought I was a robot. The feeding cues were supposed to be monotone while the praises are energetic and animated. But mine were starting to blend together. And not only that, Olivia's biological clock was thrown off too since now she was eating and napping one hour earlier. So lets just blame the poor numbers below on that and not the feeder.……
We got to go out and grab lunch at Cane Rosso, a fantastic pizza place in Deep Ellum, and Sandra got to spend some quality time with her Sophie since she stayed with her grandparents all weekend.
On the way back, Sophie fell asleep at the point when we were close to Buc-ee's so we decided to skip the stop and push on. Big mistake. Shortly thereafter she woke up and somehow realized that she had been sitting in the carseat for 3 hours! She was not a happy camper. Luckily we ran into this rest area and found her a good alternative.
3/10
Food Log:
Session 1: 40g
Session 2: 51g
Session 3: 39g
Session 4: 58g
Liquids Log:
Session 1: 29g
Session 2: 35g
Session 3: 12g
Session 4: 23g
Calorie Count: 428
I got to feed Olivia three more times today before we drove back. Given that it was Daylight Saving Time, I was running on fumes. It was so hard to muster up the energy to give the encouraging praise after each bite. I'm already a bit subdued in expressing my emotions, so you could imagine that today Olivia probably thought I was a robot. The feeding cues were supposed to be monotone while the praises are energetic and animated. But mine were starting to blend together. And not only that, Olivia's biological clock was thrown off too since now she was eating and napping one hour earlier. So lets just blame the poor numbers below on that and not the feeder.……
We got to go out and grab lunch at Cane Rosso, a fantastic pizza place in Deep Ellum, and Sandra got to spend some quality time with her Sophie since she stayed with her grandparents all weekend.
3/10
Food Log:
Session 1: 40g
Session 2: 51g
Session 3: 39g
Session 4: 58g
Liquids Log:
Session 1: 29g
Session 2: 35g
Session 3: 12g
Session 4: 23g
Calorie Count: 428
Day 20: Camp Nom Nom
Day 20 of 30
Another weekend filled with visitors for Olivia, with grandparents coming in from Houston and auntie Elaine and her boyfriend Chris coming from Austin. On the way up to Dallas, we made our usual stop at Buc-ee's. Since there were two grandparents this time, Sophie decided to take full advantage. I went to order some dinner for the road as the grandparents were watching her and when I came back, they were in the toys section following Sophie around who was holding on to two toys! When I approached her she wouldn't let go to either toys and tried to run out the door! I blocked her way and then she just got into "toddler squat" position and hugged the toys tightly. This didn't work on me, but the grandparents could not help themselves and gave in.
Today after observing Sandra feed three sessions, it was time for me to get my feet wet. I was actually practicing the same technique on Sophie in the car on the way up, and it worked! So how hard could it be? But once we started, I had to juggle between what Sandra had mentioned before - from the toys and tv, to three different foods and a drink, to adjusting the portion in response to how Olivia handles each bite, to controlling my tones, cues and praise. The therapists really do make it look easy. Olivia ate through the session, despite the rookie feeder and took nearly her best amount to date!
We decided to change things up a bit this weekend. Sophie stayed at the Ronald McDonald House with grandparents and Elaine and Chris, while Sandra stayed at OCH with Olivia and me. So as soon as the kids went to sleep, we were able to have a rare impromptu date to Pinkberry and In-n-Out Burger followed by a night in with Wreck It Ralph. Being separated for a few weeks really made us realize how much we took for granted the times we are together.
3/9
Food Log:
Session 1: 48g
Session 2: 66g
Session 3: 63g
Session 4: 75g
Liquids Log:
Session 1: 19g
Session 2: 21g
Session 3: 25g
Session 4: 29g
Calorie Count: 446
Another weekend filled with visitors for Olivia, with grandparents coming in from Houston and auntie Elaine and her boyfriend Chris coming from Austin. On the way up to Dallas, we made our usual stop at Buc-ee's. Since there were two grandparents this time, Sophie decided to take full advantage. I went to order some dinner for the road as the grandparents were watching her and when I came back, they were in the toys section following Sophie around who was holding on to two toys! When I approached her she wouldn't let go to either toys and tried to run out the door! I blocked her way and then she just got into "toddler squat" position and hugged the toys tightly. This didn't work on me, but the grandparents could not help themselves and gave in.
Today after observing Sandra feed three sessions, it was time for me to get my feet wet. I was actually practicing the same technique on Sophie in the car on the way up, and it worked! So how hard could it be? But once we started, I had to juggle between what Sandra had mentioned before - from the toys and tv, to three different foods and a drink, to adjusting the portion in response to how Olivia handles each bite, to controlling my tones, cues and praise. The therapists really do make it look easy. Olivia ate through the session, despite the rookie feeder and took nearly her best amount to date!
 |
| Hanging out with Daddy |
 |
| Quality bonding time |
3/9
Food Log:
Session 1: 48g
Session 2: 66g
Session 3: 63g
Session 4: 75g
Liquids Log:
Session 1: 19g
Session 2: 21g
Session 3: 25g
Session 4: 29g
Calorie Count: 446
Friday, March 8, 2013
Day 19: Camp Nom Nom
Day 19 of 30
Bingo! Childlife activity of the day was fun for parents and kids. Except mine. She wanted to cheat and mark all the squares so I wouldn't let her. Of course she threw a fit and then left to wander around and put bits of stuff from the floor in her mouth. Every kid won, so of course we had bingo. But the prizes! Oh, boy, were those fun. They had new costumes for each kid to take home. I found just one that fit her ok. All we need are some wings and a wand and she's ready to go trick-or-treating!
She's definitely on the mend and is eating pretty well. The one thing that her feeding team is concerned about is her drinking. Olivia's really tricking us to think she's taking a lot in, but in the end, it's really not much. We've moved her from taking 3 sips to 4 sips every time before her video is played. It's not working great and there isn't enough motivation to keep her going for 4 sips. At least she's still eating!
In OT, they are working on getting her to play with food and put it in her own mouth. She touches the food and makes a mess (which she already does at home), but getting her to taste it has been hard. Maybe it's too much playtime and she doesn't take it seriously. I'll have to start monitoring these a little closer.
Family is coming in today! Can't wait!
3/8
Food Log:
Session 1: 41g
Session 2: 45g
Session 3: 66g
Session 4: 63g
Liquids Log:
Session 1: 30g
Session 2: 24g
Session 3: 39g
Session 4: 15g
Calorie Count: 429
Bingo! Childlife activity of the day was fun for parents and kids. Except mine. She wanted to cheat and mark all the squares so I wouldn't let her. Of course she threw a fit and then left to wander around and put bits of stuff from the floor in her mouth. Every kid won, so of course we had bingo. But the prizes! Oh, boy, were those fun. They had new costumes for each kid to take home. I found just one that fit her ok. All we need are some wings and a wand and she's ready to go trick-or-treating!
She's definitely on the mend and is eating pretty well. The one thing that her feeding team is concerned about is her drinking. Olivia's really tricking us to think she's taking a lot in, but in the end, it's really not much. We've moved her from taking 3 sips to 4 sips every time before her video is played. It's not working great and there isn't enough motivation to keep her going for 4 sips. At least she's still eating!
In OT, they are working on getting her to play with food and put it in her own mouth. She touches the food and makes a mess (which she already does at home), but getting her to taste it has been hard. Maybe it's too much playtime and she doesn't take it seriously. I'll have to start monitoring these a little closer.
Family is coming in today! Can't wait!
3/8
Food Log:
Session 1: 41g
Session 2: 45g
Session 3: 66g
Session 4: 63g
Liquids Log:
Session 1: 30g
Session 2: 24g
Session 3: 39g
Session 4: 15g
Calorie Count: 429
Thursday, March 7, 2013
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
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
Wednesday, March 6, 2013
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!
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!
Tuesday, March 5, 2013
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
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
Monday, March 4, 2013
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
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
Sunday, March 3, 2013
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" |
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 |
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
Saturday, March 2, 2013
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
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
Friday, March 1, 2013
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
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
Thursday, February 28, 2013
Meanwhile at home....
So quiet that Sophie has had to make new friends...
Catch up with old ones...
And drink the night away.
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.
Olivia and I feel so blessed. We've been getting quite a few care packages. Cousin Shanie sent a fat stack of glossy magazines, Girl Scout cookies, makeup remover face wipes, and a book for O. We got another one from Vicky, Ben and Fifi today. They sent a soft bunny for O and a manicure kit for me. Thanks guys! Little luxuries really do make being away from home just a bit easier.
Liquids log:
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 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 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" and she will learn that 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:
2/28
Session 1: 48g
Session 2: 23g
Session 3: 27g
Session 4: 0g
Wednesday, February 27, 2013
Day 10: Camp Nom Nom
Day 10 of 30
Camp is starting to get real. Every Monday, Wednesday and Friday morning they do a weight check, along with the usual vitals check, so they can measure the progress and make tweaks if necessary. Today is a milestone. She FINALLY broke the 20 pound mark. To most other kids, this is no big deal and they passed it awhile ago (if they are chunky, a long time ago). But for Olivia, she's hovered at the 18-19 lb mark for so long, gaining and losing, that this is big for her.
Today they started adding Pediasure to her meal times instead of water and it's making a difference. Afterall, water is empty calories and drinking Pediasure by mouth is what's going to get her off the tube fastest. I'm starting to really look forward to meetings with the nutritionist. Every time she comes and talks to me, I learn something new. I definitely do see her making vast changes in her eating patterns, but there's nothing like numbers to just take your breath away. Today she said that at first they thought she'd be averaging 50 calories a day by mouth but she's really looking at 150 calories by mouth (this is before Pediasure!) It's enough to take a whole tube feeding away! That's huge for us, it's always been a faraway goal, but never reality until now. They've also added to her menu. Instead of yogurt and applesauce, she's now willing to eat pureed sweet potatoes, vanilla pudding and potato soup. At home, she would play with the purees and might, just might put a finger or two in her mouth, but it all depended on her mood.
She's still hating VitalStim and it's the reason why Session 2 has such low volumes. She spends the whole time pulling off the electrodes and crying in frustration. It's was wrapped around her neck with a large quantity of bandage wrap in the beginning of the session. I was playing with my phone and when I looked up, it was around her head. She looked so miserable, but so funny, I started laughing and couldn't stop. Poor baby!
Food log:
2/27
Session 1: 32g
Session 2: 12g
Session 3: 26g
Session 4: 30g
Liquids log:
2/27
Session 1: 28g
Session 2: 16g
Session 3: 41g
Session 4: 39g
Camp is starting to get real. Every Monday, Wednesday and Friday morning they do a weight check, along with the usual vitals check, so they can measure the progress and make tweaks if necessary. Today is a milestone. She FINALLY broke the 20 pound mark. To most other kids, this is no big deal and they passed it awhile ago (if they are chunky, a long time ago). But for Olivia, she's hovered at the 18-19 lb mark for so long, gaining and losing, that this is big for her.
Today they started adding Pediasure to her meal times instead of water and it's making a difference. Afterall, water is empty calories and drinking Pediasure by mouth is what's going to get her off the tube fastest. I'm starting to really look forward to meetings with the nutritionist. Every time she comes and talks to me, I learn something new. I definitely do see her making vast changes in her eating patterns, but there's nothing like numbers to just take your breath away. Today she said that at first they thought she'd be averaging 50 calories a day by mouth but she's really looking at 150 calories by mouth (this is before Pediasure!) It's enough to take a whole tube feeding away! That's huge for us, it's always been a faraway goal, but never reality until now. They've also added to her menu. Instead of yogurt and applesauce, she's now willing to eat pureed sweet potatoes, vanilla pudding and potato soup. At home, she would play with the purees and might, just might put a finger or two in her mouth, but it all depended on her mood.
She's still hating VitalStim and it's the reason why Session 2 has such low volumes. She spends the whole time pulling off the electrodes and crying in frustration. It's was wrapped around her neck with a large quantity of bandage wrap in the beginning of the session. I was playing with my phone and when I looked up, it was around her head. She looked so miserable, but so funny, I started laughing and couldn't stop. Poor baby!
 |
| Desperate measures |
2/27
Session 1: 32g
Session 2: 12g
Session 3: 26g
Session 4: 30g
Liquids log:
2/27
Session 1: 28g
Session 2: 16g
Session 3: 41g
Session 4: 39g
Tuesday, February 26, 2013
Day 9: Camp Nom Nom
Day 9 of 30
What a fun day! We woke up to a package delivery to our door. We opened to find a cute pillow from Aunties April, Sandra and Judy. It had a printed picture of our family with a good luck message. How they knew that she loves pillows and likes to smash her face in them, I just don't know! We also don't have a printed picture up here, just digital ones. She quickly pointed out Daddy. I asked her where she was and she pointed at Sophie. Close, I suppose. Thank you, Aunties! We miss you!
Today in breakfast, she took another whopping amount. She still threw up after her nap, but ate a good bit anyways. In speech therapy she took 25g of strawberry pediasure and 20g of blended potato soup. Both are new to her, which is good news because she's not used to it - especially the pediasure. She's used to drinking only water so this is amazing to me that she's even taking the pediasure.
The
speech therapist wanted to try a new (to me) treatment called VitalStim
during her speech sessions. VitalStim is a treatment for those who have
trouble swallowing. It is basically electrical stimulation on her neck
to help the swallowing muscles contract and "remember" their function.
Too bad she absolutely hates the sensation of the electric stimulations. She cries a ton, but I'm conflicted. Olivia has technically passed her last test that cleared her to drink
thin liquids, but she still sputters and coughs a lot. She's had VitalStim done
to her three times already and she's already taking bigger sips of
water.
The hospital knows it's not all work and no play. They have a program called ChildLife and it's dedicated to kid play. They have daily activities (kind of like a nursing home) and it varies from week to week. Today was sponge painting. Yeah, I wasn't going to let her just go crazy with the paint since we don't usually let her dabble in it. It would have ended up everywhere but paper. But I did let her dip a finger or two in.
For so long we've had doctors and therapists saying that her condition is one in which she must grow out of, and it can be slow progress. God has shown me a way and covered our family with mercy and grace by giving us hope through this program. She's eaten so much these last few days and our feeding team is very shocked at how well she's doing. They had much lower expectations and she's exceeded most of them. She's even gained weight, which she hadn't done in so long. Keep it up!
Food log:
2/26
Session 1: 42g
Session 2: 19g
Session 3: 24g
Session 4: 33g
Liquids log:
2/26
Session 1: 15g
Session 2: 36g
Session 3: 23g
Session 4: 25g
What a fun day! We woke up to a package delivery to our door. We opened to find a cute pillow from Aunties April, Sandra and Judy. It had a printed picture of our family with a good luck message. How they knew that she loves pillows and likes to smash her face in them, I just don't know! We also don't have a printed picture up here, just digital ones. She quickly pointed out Daddy. I asked her where she was and she pointed at Sophie. Close, I suppose. Thank you, Aunties! We miss you!
Today in breakfast, she took another whopping amount. She still threw up after her nap, but ate a good bit anyways. In speech therapy she took 25g of strawberry pediasure and 20g of blended potato soup. Both are new to her, which is good news because she's not used to it - especially the pediasure. She's used to drinking only water so this is amazing to me that she's even taking the pediasure.
The hospital knows it's not all work and no play. They have a program called ChildLife and it's dedicated to kid play. They have daily activities (kind of like a nursing home) and it varies from week to week. Today was sponge painting. Yeah, I wasn't going to let her just go crazy with the paint since we don't usually let her dabble in it. It would have ended up everywhere but paper. But I did let her dip a finger or two in.
Food log:
2/26
Session 1: 42g
Session 2: 19g
Session 3: 24g
Session 4: 33g
Liquids log:
2/26
Session 1: 15g
Session 2: 36g
Session 3: 23g
Session 4: 25g
Monday, February 25, 2013
Day 8: Camp Nom Nom
Day 8 of 30
It's Monday. Hard to function and get back into it all. Weekends are slow here at Our Children's House. And by slow, I mean that there's fewer people around and we have a less rigorous schedule. But by no means is it quiet. Oh, no. Not with all the visiting families. There's another family with twins and from Houston, but only one of the twins is here. We've connected right away, as you need to, since other families are the ones that truly understand you. However, the parallels between our families are eerie. Our identical twin girls are Sophia and Olivia, theirs are Sofia and Aliyah. Of course we both have one of them on the G-tube, since we're both here, but the "healthy" one have similar personalities - somewhat diva, carefree and slightly neglected. Since we are the same age, the dad, Ben, went to Stafford High School and knows a lot of people from Dulles. Both moms worked in ministry before the twins. I feel like the only difference is that they have a 5-yr-old son, too. It's a little eerie, but I just like to say that God has finally crossed the parallel paths and it's for good reason. We've already arranged for playdates once we get back to Houston.
So Monday. Olivia took a little dip in volume over the weekend but Monday morning she was ready to go! She ate a BIG breakfast and was super happy to have her regular feeders again. She is definitely taking more in and wants to eat outside of the feeding room. She points to whatever I am eating and says "mooo!" I take that to mean "more" and to feed her. Boot camp only allows her water between meals and anything she wants after dinner. She always wants to partake in my dinner, so I usually give her soup with nothing chunky and she takes several spoonfuls. Can I be a happier mommy?
Today they had a chef come in and make cake pops with the kids. Not just any cake pops, Elmo and Cookie Monster ones. Of course I can make cake pops anytime but when it's all ready for me... why not? Well, Olivia wasn't too interested except in the frosting, which she licked (!) and throwing the candy on the floor. I attempted to make it, but now I know why I only trust myself to make it from beginning to end. The cake ball completely fell apart as I was spreading the frosting, and it would have been an instant toss-out if I was at home. I went ahead and made them, for no reason but to have proof we did something fun... I hope none of my baking buddies see this! Knowing me, I'll go home and make some proper Elmo and Cookie Monster cake pops.
God has shown us an amazing amount of grace. Not that I've ever doubted that He's given us anything but blessings, but I've seen some of what other people have to go through and I get hit by how much mercy He extends to us. I've been so amazed by what Olivia can do and if she was any different, I'd never see how wondrous a gift she's been. And it makes me appreciate Sophie more, too. She's a beautiful, healthy, albeit spoiled, child. I miss my Sophie.
Food log:
2/25
Session 1: 45g (!!)
Session 2: 30g
Session 3: 32g
Session 4: 31g
Liquids log:
2/25
Session 1: 15g
Session 2: 10g
Session 3: 10g
Session 4: 27g
It's Monday. Hard to function and get back into it all. Weekends are slow here at Our Children's House. And by slow, I mean that there's fewer people around and we have a less rigorous schedule. But by no means is it quiet. Oh, no. Not with all the visiting families. There's another family with twins and from Houston, but only one of the twins is here. We've connected right away, as you need to, since other families are the ones that truly understand you. However, the parallels between our families are eerie. Our identical twin girls are Sophia and Olivia, theirs are Sofia and Aliyah. Of course we both have one of them on the G-tube, since we're both here, but the "healthy" one have similar personalities - somewhat diva, carefree and slightly neglected. Since we are the same age, the dad, Ben, went to Stafford High School and knows a lot of people from Dulles. Both moms worked in ministry before the twins. I feel like the only difference is that they have a 5-yr-old son, too. It's a little eerie, but I just like to say that God has finally crossed the parallel paths and it's for good reason. We've already arranged for playdates once we get back to Houston.
So Monday. Olivia took a little dip in volume over the weekend but Monday morning she was ready to go! She ate a BIG breakfast and was super happy to have her regular feeders again. She is definitely taking more in and wants to eat outside of the feeding room. She points to whatever I am eating and says "mooo!" I take that to mean "more" and to feed her. Boot camp only allows her water between meals and anything she wants after dinner. She always wants to partake in my dinner, so I usually give her soup with nothing chunky and she takes several spoonfuls. Can I be a happier mommy?
Today they had a chef come in and make cake pops with the kids. Not just any cake pops, Elmo and Cookie Monster ones. Of course I can make cake pops anytime but when it's all ready for me... why not? Well, Olivia wasn't too interested except in the frosting, which she licked (!) and throwing the candy on the floor. I attempted to make it, but now I know why I only trust myself to make it from beginning to end. The cake ball completely fell apart as I was spreading the frosting, and it would have been an instant toss-out if I was at home. I went ahead and made them, for no reason but to have proof we did something fun... I hope none of my baking buddies see this! Knowing me, I'll go home and make some proper Elmo and Cookie Monster cake pops.
God has shown us an amazing amount of grace. Not that I've ever doubted that He's given us anything but blessings, but I've seen some of what other people have to go through and I get hit by how much mercy He extends to us. I've been so amazed by what Olivia can do and if she was any different, I'd never see how wondrous a gift she's been. And it makes me appreciate Sophie more, too. She's a beautiful, healthy, albeit spoiled, child. I miss my Sophie.
Food log:
2/25
Session 1: 45g (!!)
Session 2: 30g
Session 3: 32g
Session 4: 31g
Liquids log:
2/25
Session 1: 15g
Session 2: 10g
Session 3: 10g
Session 4: 27g
Sunday, February 24, 2013
Day 7: Camp Nom Nom
Day 7 of 30
Good morning!
I got to spend the night with Olivia while Sandra and grandma are at a hotel with Sophie. They had a huge breakfast at the hotel, complete with omelet and waffle stations. Sophia had so much fun eating a little of everything. You know it's good because she nods her head while she's eating. Olivia had fun waking up with me - we played for a bit, just like at home. As you can see, I have no idea how to fix her hair. I've attempted it many times, but it never looks as nice as the pigtails mommy or grandma gives them.
What I've noticed this past weekend is that Olivia has really made herself at home here. Usually whenever we take the girls to an unfamiliar place they always cling to us and treat anyone that approaches them with "stranger danger". She loves to roam the halls with a mischievous grin on her face, wave at anyone she sees and even enter other kids' rooms to explore. Luckily, all the parents there really like Olivia so they don’t mind. And so do all the therapists - they fight to see who gets to feed her. Having to be so far from her during these four weeks, it makes me really happy to see how comfortable and loved she is at OCH.
Eating-wise, she's been doing well - taking her bites and drink without spitting out too much. However, she just loves loves loves her weekday feeding tech and therapist, and the weekend ones just aren't the same. As a result, her volume isn't as high, but are by no means low. We've been assured that this is a common trend here. Since I can't take any of these therapists home with me, I guess I better get used to having other people feed her. It's just frustrating when I think "give her a different toy and she'll take a bite." Because that's what motivates her.
We were so sad to say goodbye to family. It was so good to see them. I think I was more reluctant to leave my baby girl than anyone. I got to see her eat enthusiastically, walk around with a smile on her face, and she kissed me. How can we wait five whole days?? Going to bed with happy memories and just a bit sad.
Food log:
2/24
Session 1: 13g
Session 2: 16g
Session 3: 16g
Session 4: 19g
Liquids log:
2/24
Session 1: 14g
Session 2: 14g
Session 3: 20g
Session 4: 25g
Good morning!
I got to spend the night with Olivia while Sandra and grandma are at a hotel with Sophie. They had a huge breakfast at the hotel, complete with omelet and waffle stations. Sophia had so much fun eating a little of everything. You know it's good because she nods her head while she's eating. Olivia had fun waking up with me - we played for a bit, just like at home. As you can see, I have no idea how to fix her hair. I've attempted it many times, but it never looks as nice as the pigtails mommy or grandma gives them.
What I've noticed this past weekend is that Olivia has really made herself at home here. Usually whenever we take the girls to an unfamiliar place they always cling to us and treat anyone that approaches them with "stranger danger". She loves to roam the halls with a mischievous grin on her face, wave at anyone she sees and even enter other kids' rooms to explore. Luckily, all the parents there really like Olivia so they don’t mind. And so do all the therapists - they fight to see who gets to feed her. Having to be so far from her during these four weeks, it makes me really happy to see how comfortable and loved she is at OCH.
Eating-wise, she's been doing well - taking her bites and drink without spitting out too much. However, she just loves loves loves her weekday feeding tech and therapist, and the weekend ones just aren't the same. As a result, her volume isn't as high, but are by no means low. We've been assured that this is a common trend here. Since I can't take any of these therapists home with me, I guess I better get used to having other people feed her. It's just frustrating when I think "give her a different toy and she'll take a bite." Because that's what motivates her.
We were so sad to say goodbye to family. It was so good to see them. I think I was more reluctant to leave my baby girl than anyone. I got to see her eat enthusiastically, walk around with a smile on her face, and she kissed me. How can we wait five whole days?? Going to bed with happy memories and just a bit sad.
Food log:
2/24
Session 1: 13g
Session 2: 16g
Session 3: 16g
Session 4: 19g
Liquids log:
2/24
Session 1: 14g
Session 2: 14g
Session 3: 20g
Session 4: 25g
Saturday, February 23, 2013
Day 6: Camp Nom Nom
So this past week, Sandra and I got a taste of being single parents. This would be the longest that Olivia and Sophie have been separated since birth. For some reason, raising 1 child alone felt easier than raising 2 children with 2 parents - at least physically. Mentally, it was much harder both for us and the kids. Leaving Sandra and Olivia at the end of every weekend have been really tough. Throughout the week, Sophie would go into our room and look for Sandra and Olivia and keep making the "nothing/no more" hand sign that she knows and then proceed to play in Olivia's bed by herself. Once I get home from work, we would literally be attached at the hip until she went to bed, since her other half wasn’t here to play (or in most cases, fight) with her. Luckily these days, technology has allowed us start a new nightly tradition: video chat.
Sophie has also made a new friend - Buc-ee, who she visits twice a week (once on the way there and once on the way back). Each time we go, she picks out a new toy from the kids section. This week's pick was a psychedelic stuffed monkey. Grandma couldn’t help herself when she saw Sophie pick it up, give the monkey a kiss, and wouldn’t let go.
Today was also the first time I got to observe Olivia in the feeding program. For those who have not seen us attempt to feed Olivia, this is how it typically goes more or less: We approach her with a dry spoon, she opens her mouth for it and accepts it. We approach her with a spoon dipped in water, she takes that too. We approach her with a spoon lightly dipped in applesauce or yogurt, she accepts it and processes it in her mouth, occasionally spitting it out. We go for a slightly bigger spoonful, she tries it, then refuses all subsequent spoons regardless of what is on it. Total amount eaten < 5g.
Here is a clip from one of the sessions I got to observe:
This is only day 6 of 30 in the program. I am utterly speechless at the progress she's made so far, except praise to God and being thankful to have found such a program.
Food log:
2/23
Session 1: 14g
Session 2: 14g
Session 3: 15g
Session 4: 8g
Liquids log:
2/23
Session 1: 8g
Session 2: 12g
Session 3: 12g
Session 4: 9g
Sophie has also made a new friend - Buc-ee, who she visits twice a week (once on the way there and once on the way back). Each time we go, she picks out a new toy from the kids section. This week's pick was a psychedelic stuffed monkey. Grandma couldn’t help herself when she saw Sophie pick it up, give the monkey a kiss, and wouldn’t let go.
Today was also the first time I got to observe Olivia in the feeding program. For those who have not seen us attempt to feed Olivia, this is how it typically goes more or less: We approach her with a dry spoon, she opens her mouth for it and accepts it. We approach her with a spoon dipped in water, she takes that too. We approach her with a spoon lightly dipped in applesauce or yogurt, she accepts it and processes it in her mouth, occasionally spitting it out. We go for a slightly bigger spoonful, she tries it, then refuses all subsequent spoons regardless of what is on it. Total amount eaten < 5g.
Here is a clip from one of the sessions I got to observe:
This is only day 6 of 30 in the program. I am utterly speechless at the progress she's made so far, except praise to God and being thankful to have found such a program.
Food log:
2/23
Session 1: 14g
Session 2: 14g
Session 3: 15g
Session 4: 8g
Liquids log:
2/23
Session 1: 8g
Session 2: 12g
Session 3: 12g
Session 4: 9g
Friday, February 22, 2013
Day 5: Camp Nom Nom
Day 5 of 30
Lots of things happened today for Olivia. Many of them really shook me and my ideas of doing the right things for her. I've read somewhere that for special needs kids (all kids, really, but not as apparently) the experts in what is best for your kid is really you and those who know her best, not doctors, nurses or those who "research the disease." They wanted to try this or that for her, and all we are to do is report the symptoms back to them. It makes me feel powerless when I feel that something else should be done.
Someone once told me that kids intuitively know what is good for them and will tolerate some things even though it isn't comfortable. The inverse of that is true too. When kids know they can't deal with something they do everything to get out of the situation. I sat with the nutritionist to express a concern with her tube feeds, and found that a lot of things I held as absolutes were challenged.
Misconception #1: I thought that if we added more calories per oz to her feed, she would throw up more often because she couldn't process the extra calories.
Reality: Well, not only does she tolerate the extra calories, there's less throwing up
Misconception #2: At home she gets 5 oz of (regular) Pediasure every 3 hours, 5x a day and a slow one at night. Here, she only gets 2 oz of (concentrated) Pediasure every 3 hours, 4x a day and a long, slow one at night. Even with the extra calories and what she takes by mouth, the volume seemed low.
Reality: It turns out, we've been overfeeding her. That's so outside my box, I just stared at the woman. Her caloric needs to grow were far lower than what we were giving. I didn't even know there was a such thing as too many calories. Also, the amount of Pediasure was taking up too much cubic space in her poor little tummy, so no wonder she throws up ounces at a time. And we thought we had to overfeed her a bit to compensate for the throwing up. Do you know how much guilt is associated with not getting in all the milk into her system? Only to find out that it was completely unnecessary.
Misconception #3: Her progress in eating is slow. It's always two steps forward, one step back.
Reality: Today, she ate more than ever. The volume of food is amazing to me, but the conditions in which she DID eat makes me wonder what I know. Warning: This may be TMI to some! She has had some problems...let's call it backed up pipes. My other bunny won't eat at all when she's backed up and is trying to, uh, dislodge it. She was straining until she was red in the face and after each attempt, she took another bite. What a champ!
Food log:
2/22
Session 1: 25g
Session 2: 22g
Session 3: 15g
Session 4: 21g
Liquids log:
2/22
Session 1: 10g
Session 2: 4g
Session 3: 6g
Session 4: 4g
Lots of things happened today for Olivia. Many of them really shook me and my ideas of doing the right things for her. I've read somewhere that for special needs kids (all kids, really, but not as apparently) the experts in what is best for your kid is really you and those who know her best, not doctors, nurses or those who "research the disease." They wanted to try this or that for her, and all we are to do is report the symptoms back to them. It makes me feel powerless when I feel that something else should be done.
Someone once told me that kids intuitively know what is good for them and will tolerate some things even though it isn't comfortable. The inverse of that is true too. When kids know they can't deal with something they do everything to get out of the situation. I sat with the nutritionist to express a concern with her tube feeds, and found that a lot of things I held as absolutes were challenged.
Misconception #1: I thought that if we added more calories per oz to her feed, she would throw up more often because she couldn't process the extra calories.
Reality: Well, not only does she tolerate the extra calories, there's less throwing up
Misconception #2: At home she gets 5 oz of (regular) Pediasure every 3 hours, 5x a day and a slow one at night. Here, she only gets 2 oz of (concentrated) Pediasure every 3 hours, 4x a day and a long, slow one at night. Even with the extra calories and what she takes by mouth, the volume seemed low.
Reality: It turns out, we've been overfeeding her. That's so outside my box, I just stared at the woman. Her caloric needs to grow were far lower than what we were giving. I didn't even know there was a such thing as too many calories. Also, the amount of Pediasure was taking up too much cubic space in her poor little tummy, so no wonder she throws up ounces at a time. And we thought we had to overfeed her a bit to compensate for the throwing up. Do you know how much guilt is associated with not getting in all the milk into her system? Only to find out that it was completely unnecessary.
Misconception #3: Her progress in eating is slow. It's always two steps forward, one step back.
Reality: Today, she ate more than ever. The volume of food is amazing to me, but the conditions in which she DID eat makes me wonder what I know. Warning: This may be TMI to some! She has had some problems...let's call it backed up pipes. My other bunny won't eat at all when she's backed up and is trying to, uh, dislodge it. She was straining until she was red in the face and after each attempt, she took another bite. What a champ!
2/22
Session 1: 25g
Session 2: 22g
Session 3: 15g
Session 4: 21g
Liquids log:
2/22
Session 1: 10g
Session 2: 4g
Session 3: 6g
Session 4: 4g
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