We've noticed that Ruby's reflux seems to have gotten worse since we've been back to Texas. She now vomits after almost every meal. We've increased her prilosec to twice a day. We keep her verticle after all her feeds. We've experimented with how fast we let the feed go in, she is on gravity feeds. The best thing seems to be to keep her still and upright for about 45 minutes after she eats. The feeds with KCl are esspecially problematic becasue the KCl upsets her stomach. We've had a few questions about the Patasium Chloride. She is on it because the diuril (diuretic). She needs help keeping her electrolights in balance due to the diuril. They go hand in hand. As we found out last week she's not ready to come off the diuril, so the KCl is a necessary evil. This is all frustrating because I feel like we took some steps back since we've been home. She's not taking the bottle as well, either. It's hard not worry about her getting rid of the NG tube. If she can't start taking all her feeds by mouth in the coming months we could be facing a surgery to place a g-tube. Which for a normal baby would be a pretty straight forward surgery. For Ruby it wouldn't be. We don't exactly where all her organs are. So to place a g-tude the surgeon would have to go in and locate the intestine. Plus any thing that requires intubation has Chris and I scared. We are months away from this, but it's a very real possibility.
Other than the reflux and her normal times of breathing a little fast, Ruby is doing great. She's a happy easy going baby for the most part.
Last night we took her out in the back yard so she could lay in the grass and look at the trees. She loves trees and ceiling fans.
We just need to keep in mind just how far she has come. Some days the obstacles left to over come seem very daunting. The feeding and reflux issues are frustrating, but not life threatening. The patience, positive attitudes and support from family and friends will help us get through the next few months. Ruby's home and happy and that's what matters.
Many prayers for Ruby that
Many prayers for Ruby that she can continue thriving and keep working with the bottle...she will get there!! It is such hard work for our little ones to eat, suck and breathe at the same time. Love the picture of you two...it looks like Ruby was having fun!! She has changed so much since she was born. Praying for good days for Ruby and positive progress with eating.
Hugs, Tracy, Ian's mom
Ruby, you rock! Keep working
Ruby, you rock! Keep working on it, sweetheart....believe me you WANT to be able to eat all sorts of yummy stuff by mouth. Nothing beats the taste of ice cream and cookies, esp. with your mom's cooking!!!!
Love the picture of the two of you outside in the grass. You both look wonderful. It looks like her eye color is exactly yours, Holly! So very cool :)
Hang in there..
Love from the 'Lou-
Tami, Chuck, Aisling and William
What a great picture of the
What a great picture of the two of you! Ruby is absolutely gorgeous!! We are so glad that she is home where she belongs!
As the post above this one
As the post above this one shows, CDH is *never* easy, is it? :( But she's here. And she's healthy and happy. And you guys look like you're doing really well.
I hope that she shows real progress over the next few months. She's already beat such amazing odds...keep kicking butt, Ruby!!!
Love,
Missy