~~~~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.
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 :)