~~~~WARNING, VERY LONG POST AHEAD~~~~~~
Is that a light at the end of the tubie tunnel I see???? Perhaps... we'll have to see. Here is a recap of what has happened since my last post yesterday, on the morning of Day 2...
So when I last wrote, Caydence had fallen back asleep while playing with her toys and it was time for lunch. I woke her up, changed her diaper and got her in her highchair. She was still very sleepy. She didn't really want to eat. She threw her fishstick pieces, she threw the macaroni and cheese I made her, and she threw her Mac N' Cheese puffs. Eventually, I was able to get her to eat half a fishstick and an ounce of her yogurt/pediasure drink. But she was just SO lethargic. She kept putting her head down on her highchair tray and wanting to go to sleep. Then she started crying. That was when I had it! The therapist hadn't called back yet and I totally caved. I hooked up her tube and gave her half the amount of Pediasure she would normally have and the rest Pedialyte. She seemed to perk up a bit, but was still tired, so I then put her down for a nap.
She slept for 3 and a half hours and when she woke up she seemed much more improved. Earlier ,while she was sleeping her feeding therapist called me back and basically just told me that everything sounded pretty typical. She had heard that a lot of kids get really tired and lethargic. She said that it was fine to give her the Pediasure to get her more awake. Since obviously, you can't really feed a kid who is slumped over in their highchair.
So when Caydence woke up, she was a lot more chipper and back to normal. During her next feeding she declined beef broth, smooshed carrots, mac n' cheese puffs, melted chocolate, and yogurt melts. Thankfully, Josh came home after about 20 minutes of me trying to get her to eat and he was able to help me feed her. She eventually ate an ounce of her drink, 5 or 6 cheddar & bacon TGIFriday's potato skin chips, 1 piece of kix cereal, and 2 sweet potato puffs. Then when she wouldn't eat anymore, she had her Pedialyte and water.
That night we went over to celebrate our friend's birthday. I was eating some popcorn and Caydence was watching me intently and started signing "more". Which means she wants something. I thought it was crazy that she would want some popcorn, since it is such a different texture, but I pulled off some big puffs off the kernel and gave them to her. SHE LOVED THEM!!!! She kept wanting more and more and more!. She probably ate anywhere from 1/4 cup to a 1/2 cup of popcorn puffs. She also ate some garlic bread. Now, I know that most of what she's been eating isn't the healthiest. But right now, I am just trying to find anything that she will eat. When we came home she had Pedialyte and water and then went to bed.
Day 3...
When I woke up this morning, I was nervous to see her. I was afraid she would be the weak, shaking little Caydence I saw the previous day. But when I went in her room, she was fine. Sitting in her crib, playing with her stuffed animals with a big 'ol smile on her face. I took her down stairs and got her all set up for breakfast. She declined (uh um, threw) banana, toast, yogurt melts, and applesauce. But I was able to get her to have about 7 big spoonfuls of oatmeal, which equaled about an ounce. And 2 ounces of her drink! This was a big deal, for she hadn't had 2 ounces of her drink in like 2 months! So when she wouldn't take anymore, I subtracted the amount she drank by mouth and hooked her up to have the rest via Pedialyte and water in her tubie.
At lunch time, she again surprised me. She ate practically a whole fishstick (only 2 small bites left), she had 28 mac n' cheese puffs, and drank 4 ounces of her drink!!!! Yes 4 OUNCES! That's the most ever! INSANE!!!! It was awesome. After she wouldn't take anymore. I again hooked her up and gave her Pedialyte and water; (subtracting the amount she took by mouth).
At this point I am thinking... she finally gets it! She is starting to understand that eating makes your belly full. It makes you feel better!
After lunch she took a 3 hour nap. When she got up she ate again. She initially threw the macaroni and cheese I tried to feed her. But I was able to bribe her by making her realize that she doesn't get to drink her drink until she eats a noodle. So she would eat a macaroni and cheese noodle and then get a drink, eat another noodle, get a drink. She caught on quick. She ended up eating about 1/8th cup of macaroni and cheese, about 15 cinnamon maple crunchies, and again 4 OUNCES of her drink!!!!!!!!!!! Awesomeness!!!!
For dinner tonight Josh and I had steaks on the grill, garlic mashed potatoes and green beans. I definitely wanted to have the mashed potatoes, cuz I know Caydence really likes them, so I wanted to be sure she had an opportunity to eat them. We were kind of slow on getting dinner started cuz we were on a cleaning spree when Josh got home from work. But we got things going and dinner was probably 15 minutes away from being ready. All of a sudden Caydence just had a melt down. She just kept crying and crying. I figured she must just be tired and hungry. So I had Josh get her in her high chair and I made up her drink. Boy did she want that drink!!!! As soon as I started giving it to her she was all smiles! She wanted more and more and more and more!
Caydence ended up taking 7 OUNCES OF HER DRINK!!!!!!!! The most ever by far! I couldn't believe it. It was enough, that she didn't even need a tube feeding!!!! This is the first time ever, that she has eaten enough by mouth that we were able to actually skip a tube feeding! I should also mention, that she also ate about 17 mac n' cheese puffs, but wanted nothing to do with the garlic mashed potatoes...which is weird because she's always liked them whenever she's tried 'em. Oh well. I am just sooo happy that she drank that much!!!!!
Tomorrow I'm going to call her feeding therapist and GI specialist to see where we are supposed to go from here. I first need to figure out how many calories she was able to consume; especially today. Then I need to figure out if her thickened Pediasure dranken at 7 oz, is still equal to 7oz unthickened, so figure out if its enough fluid to sustain her. I'm just not sure if thickened Pediasure would equal the same amount as unthickened. Kind of confused... I'm sure we'll need to work with a nutritionist.
On Day 2, I was SO ready to throw in the towel, but I'm glad I stuck it out! It seems cruel, but Caydence has now experienced real hunger, probably for the first time in her life. But I think she is starting to realize just when food is. That food is good, it gives us energy to live, and is necessary! Hopefully she will continue to eat like this, and expand her palette a bit along the way. I'll keep you updated :)
Thursday, June 2, 2011
Wednesday, June 1, 2011
Pedialyte Trial Day 1 into 2
Caydence has been starting to eat more the past few months. But not enough to eliminate or decrease any of her feedings. Her feeding specialist that she sees recommends that we do a Pedialyte trial with Caydence in order to get her hungry and hopefully, get her to eat more. We called Caydence's GI specialist and they agreed and gave us the directions and amounts for the trial.
What happens is that we replace all her Pediasure with Pedialyte for 3 days. So she stays hydrated, but doesn't get any calories. The Pedialyte is also supposed to keep her electrolytes balanced. We were told that kids don't eat much on Day 1, but by Day 2 and 3, she should be eating a lot more. The GI specialist suggested not giving her any Pedialyte during the day and just give her all the Pedialyte and water overnight while she is asleep. But I know that totally would NOT work since she is a mover and a shaker at night. The tube would probably come out or she'd pull it apart and we'd have a Pedialyte water crib. So I've opted to give the Pedialyte in her tube after ever "meal" like I would with the Pediasure.
Yesterday was our first day on the trial. For breakfast she had a bite of banana and then she spit it out and threw it. After that she had 7 pieces of kix cereal and then started throwing them. She also had 4 spoonfuls of her yogurt/pediasure drink on a spoon and then started spitting it all out. She wouldn't take anything more after that.
At lunch she ate almost an entire fishstick, which is the most fishstick she has ever eaten. This took her a half hour. And she wouldn't eat any of her cooked carrots which she normally likes. She also had a 1/2 oz of her Pediasure/yogurt drink on a spoon.
For an afternoon snack I tried giving her small bits of peanut butter and jelly sandwich, but that was a no go. She just would pull them out of her mouth and throw them. She had 1 goldfish cracker but after that, she proceeded to pull them out of her mouth and throw them. She did take an ounce of her Pediasure/yogurt mixture on a spoon and 7 pieces of bacon and cheddar potatoskin chips and 8 pieces of mac N' cheese puffs.
Dinner was the hardest, because I knew by then she must be starving. Except she didn't want to eat :/ She didn't want any brownie, noodles, or chicken tenders. She took 3 spoonfuls of her drink and then just started spitting it out and smooshing it around in her hands. We tried her mac N' cheese puffs, but she just took them out of her mouth and threw them. She didn't want anything, but seemed fine.
This morning she was VERY lethargic and didn't want to wake up. We finally got her up and got her down stairs in her highchair. She was very weak and sleepy and her hands we kind of shaking. She acted hungry though and I was able to get her to wolf down an ounce of her drink on the spoon, 3 big bites of oatmeal and a half a jar of applesauce. She turned down the blueberry waffle, kix cereal, banana, strawberry/apple puffs, and mac N cheese puffs though. She had her Pedialyte and water and seemed more like her self.
I called her feeding specialist and left a message asking if this is normal. If she should be eating more by now... If I should give her a little Pediasure in her tube to take a edge off. I'm still waiting to hear back. Caydence just fell asleep playing with her toys. And it's time for lunch. Understandabley she is zapped for energy and very tired. For lunch I'm going to try more fishsticks since she seemed to like them yesterday and some mac n cheese. Tonight we're having steak and garlic mashed potatoes for dinner. So I'm hoping she'll eat some of the potatoes since she has LOVED them the past two times we've had them. Maybe she'll have some hotdog and veggies too. We'll see...
It was so hard seeing her so weak and frail this morning. I don't know how much longer I can do this. I guess we'll see how lunch goes, but I might end up having to give her Pediasure. Hopefully my little sleeping beauty will wake up for lunch now...I'll keep you updated...
Wish me luck <3
What happens is that we replace all her Pediasure with Pedialyte for 3 days. So she stays hydrated, but doesn't get any calories. The Pedialyte is also supposed to keep her electrolytes balanced. We were told that kids don't eat much on Day 1, but by Day 2 and 3, she should be eating a lot more. The GI specialist suggested not giving her any Pedialyte during the day and just give her all the Pedialyte and water overnight while she is asleep. But I know that totally would NOT work since she is a mover and a shaker at night. The tube would probably come out or she'd pull it apart and we'd have a Pedialyte water crib. So I've opted to give the Pedialyte in her tube after ever "meal" like I would with the Pediasure.
Yesterday was our first day on the trial. For breakfast she had a bite of banana and then she spit it out and threw it. After that she had 7 pieces of kix cereal and then started throwing them. She also had 4 spoonfuls of her yogurt/pediasure drink on a spoon and then started spitting it all out. She wouldn't take anything more after that.
At lunch she ate almost an entire fishstick, which is the most fishstick she has ever eaten. This took her a half hour. And she wouldn't eat any of her cooked carrots which she normally likes. She also had a 1/2 oz of her Pediasure/yogurt drink on a spoon.
For an afternoon snack I tried giving her small bits of peanut butter and jelly sandwich, but that was a no go. She just would pull them out of her mouth and throw them. She had 1 goldfish cracker but after that, she proceeded to pull them out of her mouth and throw them. She did take an ounce of her Pediasure/yogurt mixture on a spoon and 7 pieces of bacon and cheddar potatoskin chips and 8 pieces of mac N' cheese puffs.
Dinner was the hardest, because I knew by then she must be starving. Except she didn't want to eat :/ She didn't want any brownie, noodles, or chicken tenders. She took 3 spoonfuls of her drink and then just started spitting it out and smooshing it around in her hands. We tried her mac N' cheese puffs, but she just took them out of her mouth and threw them. She didn't want anything, but seemed fine.
This morning she was VERY lethargic and didn't want to wake up. We finally got her up and got her down stairs in her highchair. She was very weak and sleepy and her hands we kind of shaking. She acted hungry though and I was able to get her to wolf down an ounce of her drink on the spoon, 3 big bites of oatmeal and a half a jar of applesauce. She turned down the blueberry waffle, kix cereal, banana, strawberry/apple puffs, and mac N cheese puffs though. She had her Pedialyte and water and seemed more like her self.
I called her feeding specialist and left a message asking if this is normal. If she should be eating more by now... If I should give her a little Pediasure in her tube to take a edge off. I'm still waiting to hear back. Caydence just fell asleep playing with her toys. And it's time for lunch. Understandabley she is zapped for energy and very tired. For lunch I'm going to try more fishsticks since she seemed to like them yesterday and some mac n cheese. Tonight we're having steak and garlic mashed potatoes for dinner. So I'm hoping she'll eat some of the potatoes since she has LOVED them the past two times we've had them. Maybe she'll have some hotdog and veggies too. We'll see...
It was so hard seeing her so weak and frail this morning. I don't know how much longer I can do this. I guess we'll see how lunch goes, but I might end up having to give her Pediasure. Hopefully my little sleeping beauty will wake up for lunch now...I'll keep you updated...
Wish me luck <3
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