The hunger experiment failed. In fact she seemed happier. I'm guessing that is due to the lack of reflux since she had nothing her stomach. She did eat a tiny bit more solids, but her intake yesterday was 6 ounces. She needs 24 ounces per day. She took the same amount yesterday by mouth as she does normally. Making her hungry didn't seem to matter. She woke up at 3am last night and took half an ounce, but really that was the only different thing. She didn't even act hungry. We'll give it a try again in a couple days. We need to let her catch up a bit from only getting quarter of her calories yesterday. I'm guessing the only thing we learned from this little experiment is that we are no where near ready to come off the tube. Which is a hard fact for Mom and Dad to deal with. It's not like signing permission to put her on ECMO, but it's still a hard thing to deal with.
We have our first home PT session today. Our names finally came up on the waiting list. I am so happy about this. I LOVE our therapists at Dell, but I hate taking Ruby to the Children's Hospital once a week. Hopefully we'll love the new therapists just as much.
To answer some questions. We switched from Prilosec to Prevacid, becasue we didn't want to pay the compounding fees anymore. Our insurance doesn't pay for compounding. Prilosec has to be compounded every two weeks and was costing us about 100 dollars a month. Add in co-pays to see all the doctors every month and we were spending over 400 dollars a month on co-pays and compounding fees. She's off the diuril and potassium chloride, so we don't have to those compounded anymore. We were just looking for ways to save some money AND keep her healthy. The Nexium seems to be the best of both worlds. It's not clogging the tube and we don't have to pay to have it compounded. Chris and I have been lucky in that we have good health insurance. We haven't had to make any decisions based on money so far and we want to continue to do that. We do want to be able for me to continue to stay home with Ruby. I love being a chemist, but I love being a stay at home Mom more.
Here's Ruby saying more peas please. It seems she likes food more than the bottle, but she doesn't eat enough for it to matter. it's just less of a fight for her to take it. She also hates being fed. She only wants to feed herself. She's never been shy about "telling us what she needs" I don't see why this would be any different.
This one is from this weekend. Ruby had so much fun watching all the runners at " The Rock".
That must be frustrating
That must be frustrating alright-when you know she has to eat and doesn't even care! Silly girl-has she tried a sippy? She looks great and you guys do such a good job with her!
What a girl that Ruby is!!
What a girl that Ruby is!! :) She's definitely marching to the beat of her own drum and mom & dad better comply! lol
Sorry your experiment didn't work, but I think it's great that you gave it a shot. She looks absolutely wonderful and although I know it' difficult at times, I can see on your faces how thrilled you are with all of her progress. Keep it up!!
Seeing all of Ruby's pics
Seeing all of Ruby's pics puts a smile on my face...I just LOVE the peas pic! You're awful brave letting her "feed" herself...and peas no less! HA! (Haven't tried those with Jaime yet.)
We're good all things considered! What I'm most thrilled about is that Jaime is getting 1 hour...or so of PT and OT every day...except the weekends, of course!
I'm sooooo happy that Ruby's name came up on the waiting list for home therapy...you are going to enjoy it so much (Jaime only had 2 sessions, but both were great). As always we wish her nothing but the best! Hang in there with the feeds...like you know...and many others have said, she'll tell you what she needs!
Enjoy your week.
Sheryl
Hi Mom and Dad-I'm sorry the
Hi Mom and Dad-I'm sorry the experiment failed. I can't imagine how hard that must be to expect and want her to react a certain way and she wants none of it. I LOVE the picture of peas all over her face. That is so perfect! She is a beauty. I wish I was there to play with her and listen to her squeal and move all over the place. Sarah
Don't despair, Ruby will be
Don't despair, Ruby will be off the NG before you know it. She will just do it in her own time- and as you probably have found out, CDH babies have their own agendas- you should see how stubborn Alina is :0). We love seeing Ruby's pictures, she's such a cutie!
You guys are doing great!
You guys are doing great! Ruby will get there on eating. Weston was the same way we would try to let him get hungry and he never would, it was so frustrating because you know how much they are supposed to be eating and when they aren't you worry. I know I would always worry and drop the NG tube back down because I knew he needed to eat. Weston never liked baby foods, we have a hand grinder that I would grind up the foods we were eating and add a little bit of milk or water to make it the same consistence of baby food and he liked that more flavor I think. Holly you are so blessed to stay home with Ruby I know that makes the difference. Hope you all like your new PT. God bless you all. Stay well during this cold season.
Jenny (Weston's Mommy CDH 7-9-08 NG free after 13 months)
Just want to let you know to
Just want to let you know to stick in there--we had a 23 weeker who was intubated for 100 days and then extubated and came home on cannula...and of course NG feeds. For a number of reasons, a G tube was not placed and although she had the NG tube until she was 18 months old, she NEVER took a bottle and finally went straight to cup. She started eating real foods around a year and loved that...but really never wanted any part of baby food and definitely not a bottle. She's three now, thriving, and eating and drinking everything in sight!