TA-DAAAH!!! Ella's first night with no feeding tube! :)
Okay, big news here folks, BIG! Ella has gone ONE week so far WITHOUT being fed by her feeding tube AT ALL!!! I can hardly believe it even as I type the words. Up until last Thursday she was still being fed two times at night with her feeding tube and last week we decided just to be brave and stop her feeds completely and see what happened. Her dietician with ECI comes weekly to weigh her and discuss calories, etc. and she came this past Tuesday and Ella had maintained her weight since dropping the night feedings. WOOHOO! Funny story, the other morning I went in to get Ella up and usually in the morning I have to turn her feeding pump off, undress her and unplug her from her feeding tube. Eva knows the routine well. Well, after a few days of not using the feeding tube Eva finally noticed so when I went in to get Ella I just picked her up out of bed and sat her in my lap in the rocking chair, Eva pointed to Ella's feeding tube in the corner of her room and says, "Mommy, we "loss" (Eva's word for forgot) plug Aiya(Ella) in!" I explained to her that we didn't need to plug Ella in because God is helping Ella eat on her own and she didn't need her feeding tube. Eva got a HUGE smile on her face and was just so excited for Ella. So sweet!
We are very excited but I feel like right now I am still just cautiously optimistic. I do believe that this is it and my prayer is that there will be no turning back but we're just taking it day by day, week by week and just trying to be very intentional about feeding her and making sure she is getting lots of calories. I have a big lump in my throat just thinking about how far Ella has come and that these are the days I had hoped and prayed for...days where she enjoys eating and is sustained by food taken by mouth and not from a feeding tube. I haven't let myself completely go yet because I realize that this is all very new and if we have to take some steps back we will but I'm praying we don't. She is eating great these days and last week we graduated in feeding therapy from going once a week to now going every other week. Yea! Another praise. So, we are slowly making the transition of going from intense therapy to the day when we will not need it. We also saw Ella's tummy surgeon last week and he was very pleased with all of her progress. Just out of curiosity we asked him about what all needs to happen as far as feeding goes before he would permanently remove her G-button and he said when we haven't used the feeding tube for a month or so AT ALL and we get the okay from her GI doctor then he will take it out. We are not there yet and we're not in a hurry but that day will be here soon, I believe it. As far as surgery goes to fully close her abdominal muscles...we are still a couple of years away. She is still too small for the surgery to be successful so for now she just needs to continue to grow, gain weight and develop. We'll see how things go so keep praying.
We're doing our best to keep food in front of her and I feel like we are always feeding her. Which in turn means that WE are always eating. YIKES! Not kidding, every night before bed we ALL sit down and have an ice cream sandwich. Every.Night. I mean, heaven forbid that Ella eat ice cream by herself so we all join in to encourage her. Peer pressure is not always a bad thing. :) Hey, it gets her eating so it works for us. Sooo, last week I also purchased a pair of running shoes because I gots to get movin' if we're going to be downing the Blue Bell every night for the next however many years to keep Ella's weight up. Do you see how feeding affects everyone in the family? Sheesh! Anyway, she is eating great at meal times which is such a blessing. I don't take one bite she takes for granted and I just love watching her eat. I know that might sound a little crazy but it's true!
Thanks for praying friends. Keep praising our Father and keep the prayers coming for Ella that she continues to eat well on her own and gains weight. We'll keep you updated!
Friday, June 18, 2010
Posted by Amy at 2:15 PM
Wednesday, June 2, 2010
This past weekend we took our FIRST EVER family trip to the pool! I know, can you believe it? It was so fun! Last summer Ella spent about 20 minutes total in a swimming pool on two different occasions and one involved a projectile vomiting episode so needless to say this was our first pleasant experience in a pool. We've never gone together as a whole family so this was a fun little outing for us and Ella loved the water. She did great and loved splashing around. It's a simple thing but it was fun for us and I'm so excited to finally be able to take her to the pool and let her play.
I've been a little nervous about taking Ella to a public pool with the whole G-Button thing. I don't know, it just kind of gives me the heeby-jeebies thinking that this is a hole into her body that's not supposed to be there and what if she gets some kind of weird infection or something because of dirty pool water. I did some research, called her surgeon and asked around and no one has seemed concerned or had any great ideas of how to cover it besides putting a waterproof bandage over it so I justs decided to not think too much about it and just go with it. However, if any of you feeding tube friends out there have any advice on that that I'm not aware of I'm open for ideas. I do want to clarify and say that she does get regular baths at home (someone just asked me about that which is why I bring it up) but that's different because we're in our own water and it's not being used by hundreds of people. Just so you all don't worry that I don't bathe my child...no worries, she is very clean. :)
So, instead of covering it we just did the little rubber band trick and rubber banded her button closed, which is the most GENIUS idea for leaky buttons or ones that won't stay closed very well. Thanks to Ella's surgeon for this great idea! We only discovered this need last year because the first button Ella had was SUPER leaky and if it came open (which it did all the time) everything she just ate or had in her stomach would come pouring out. Not cool on several levels. I'll spare you the stories about leaky G-buttons and stomach contents. :)
Anywho, there's your G-Button tip of the day, little rubber bands work wonders. So back to the pool, we just went on our merry way and I just tried not to think about gross germs. Here are some pictures of the girls as we are getting ready to go...they can hardly contain their excitement. Mrrrr....mrrrr.
The happy campers, all greased up with sunscreen and ready to go
The looks of excitement are just too much to handle aren't they?
Oh, ok, I think I'm starting to see a little smile and a gleam in the eyes
Aaahhh, there's the smile I've been waiting for.
Me and Els
Isn't she sweet?
We had a fun time and are looking forward to many more days spent at the pool this summer. I had to try and find a swimsuit this past weekend too which is a whole other story in itself. Let me just say that having the whole fam plus a huge stroller in a dressing room at Academy and trying to try on swimsuits is not the way to go. Yes, the whole fam was there and if you remember I do have some strict pool rules, one being that the third party opinion is crucial and a must when picking out a swimsuit but honestly, there's got to be a better way. Anyway, happy swimming everyone!
Posted by Amy at 9:55 PM