Sunday, August 21, 2011

Never Say Never

In spite of having a really difficult past week, there were a couple bright spots. I am one proud momma when I tell you that on Thursday, Aviana had her feeding tube removed ;o) She has a Bard button instead of a Mickey, so we actually had to go in to have it taken out. 

While Aviana was in the hospital, the doctors' told us she would probably never eat by mouth again. It was a long time coming, but we hadn't used it for food in about 5-6 months, and for water in about 2-3 months. We felt really comfortable having it removed, and knew it was definitely time. We have worked extremely hard, so this one small thing feels like a huge victory for us!

We have The Institute to thank for our success. Without them, I can't even begin to think of if, and when the tube ever would have come out. 

Everything on this journey has a way of being bittersweet though, so in having Aviana's tube removed, we immediately lost all of our nursing hours. I understand, but do find it ironic because feeding her by mouth is a million times more challenging than feeding her by tube. 

We had to say goodbye to Lesya on Friday. We will miss her terribly, as she was one of the best nurses ever.

As we continue on, please keep us close in thought :o) 


  1. Baby steps.....I remember the day we threw out Brian's feeding tube. He was 9 years old. We thought he would never eat by mouth. We also thought he would never walk, but our miracle worker came in the hospital at just the right time to turn his life around. It sure was nice having quick feeds and knowing I could get liquids in him when he was sick, but I sure don't miss the icky wound when the tube leaked or changing out the tube. We got to be pros. I am so happy for you all. (just another thing to prove the doctors wrong. Our doctors told us Brian was going to be mentally wrong!)

  2. Having the feeding tube removed is HUGE! Congratulations! I am sure that she feels much more comfortable. I am sorry though that the nursing is gone. That is going to be a very hard transition for sure. I will keep you in my thoughts as you take this big step.

  3. On Wednesdays Lily has gymnastics over by you at 5:30. If you need help patterning between 4:30 and 5:20ish or anything else for that matter it would be easy for us to stop by. I'd have Lily but Rainey day could evtertain her. My wimpy arms could use some excersize!!

  4. Oh yeah and a big congrats. I hope that it wasn't to painful for her. I expect to see some pictures of your girl in white. Tummy time is gonna be so much more pleasant. Sarah again :0)

  5. That is awesome! Avi has accomplished so much that they said she wouldn't. I bet having that out is so much more comfortable for her. *Hugs*

  6. What a massive accomplishment for ALL of you!!

    And good for you on focusing on a GOOD thing this week .... I'm proud of ya.

    You can do this sweetheart. You were made for such a time as this.

    You are inspiring others to push on even when it hurts, is exhausting, is mean, and you feel like stopping....

    Holding you close in thought..

  7. That's a huge step, although the loss of nursing really stinks!

    I remember when one of mine had a GT and there were at least 3 mornings when I went into her room to get her ready so I could go to school and the damn tube had come apart in the night and she was swimming in her milk. She had hers removed about age 4 and now at 13, she's healthy and has a very pretty tummy, perfect enough for any two piece bathing suit.


  8. Yay! Yay! Yay! What a HUGE milestone! I can completely relate to the fact that feeding orally is WAY more challenging than through a tube as we are in a similar situation with Caden. I am sorry for the loss of nursing hours as we face the same dilemma. We are getting ever closer to not using the tube ourselves. One day we'll get to take his out also... I am so happy for you on this front! :)

  9. HURRAY!!!!! that is a MAJOR MILESTONE i am very happy for all of you.

    as for nursing. as difficult as it may be to do without.....i know you will adapt. and this too shall pass

  10. HOORAY for all of you!! An AMAZING victory! I was just thinking this morning about how most people aren't in awe of amazing things unless those things happen very quickly. Well, not so with me and the rest of your blog followers! :) Truly a job WELL DONE. :)))

    Sorry to hear about the nursing hours. Somehow you guys will adjust, rockstars that you are. xoxo

    Fi's mama

  11. What terrific news! Congratulations! I remember being so elated to chunk my daughter's ng tube finally! As for losing your nurse- the challenges always provide more inspiring material for you to write about. You'll get it down.