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
One week...Unplugged!
Posted by Amy at 2:15 PM
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11 comments:
Whoa I was just catching up on your last couple of posts, then I went to Ann and Derran's page. Then I came back to this one and you had updated again! What awesome news Amy!!!! We will certainly be praying for you guys to keep on getting good news and continue moving forward with NO steps backward!!!! So excited for you and for Ella! Hope to see you soon...I miss you funny girl!
TEARS!!!! Oh my goodness, I am AMAZED! I am just so excited for you guys!! Wow wow wow, that is just darn awesome! Way to go Ella, Mommy, Daddy, and Eva!! We know around here that it take the whole family (even with ice cream sandwiches!) to meet goals like this for super special kiddos. I am THRILLED for you!
Thinking of Weird Al... "Just Eat It, Ella!!" :)
Ice cream sandwiches for all! You can come swim some of that off at the pool with us when I get back. Can't wait to catch up!
That is great!!! We need to see you guys this summer!
Ella Unplugged !! how awesome is that !!! That is such wonderful news, I am so happy for all of you. It has been a long journey and you have done such an amazing job. Eat Ella Eat!!
I love you all !!
Praise God. Oh, I'm available to come help with the ice cream therapy!
Yea for Ella and the entire bluebell eating Carder clan! So happy for you and thankful for answered prayers!
I have tears in my eyes just thinking about how HUGE this is!!! We love you guys so much & are so thankful for all the progress Ella keeps making - praise the Lord! And we will pray that she never has to use the feeding tube again & that you're on to the next stage of life with her. Yeah Ella!
So glad to hear that Ella is doing so good. I know this is huge for you guys and we will have to throw a big party when she's completely tube free. Wish I could eat ice cream everyday and look as good as you. Have one for me next time because I'm now on a diet. Talk to you soon.
Wow great news about Ella. I keep you all in my prayers and love you so much! Hope to see you all soon.Vanessa
I am SO, SO happy for you guys Amy! She is so precious! Thank you for all the encouragement you have provided us while we have been on a journey too! Love ya, Kam
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