Tuesday, August 2, 2011

Day 41 - Failed Tube Wean

So - 41 days with no tube feeds and Allie is down 2.2 pounds total.  She has lost 8.03% of her body weight and I am no longer comfortable withholding her feeds.  There is no indicaion at all that Allie will start to eat, if anything, her oral intake has decreased dramatically in the last two weeks.  Of course our GI doctor is out of the office until Monday so I don't know what he's thinking, but quite honestly, it wouldn't matter because my motherly instinct is telling me this wean is no longer safe for Allie.

So back to a blenderized diet we go.  It's not the worst thing but quite honesty, I was praying for a successful wean.  You wonder if the wean feels like a failure and there is no question about it - it sure does.  I'm still struggling with the fact that I simply cannot get my child to do one of the most natural things in the world - EAT! 

I am more convinced now than ever that Allie simply doesn't feel the hunger sensation.  There is just no way that a child could go 41 days without full nutrition and not be absolutely starving.  Allie is continuing to refuse food after taking only 2-4 bites.  There is absolutely no way that she is getting full on 2-4 bites - this whole thing just doesn't make sense.

So, as I sit here and think about our tube weaning journey, I am proud we have made it 41 days, however I was also praying our outcome would be much different.  I thought I was seeing light at the end of the tunnel but quickly that light has faded and we are right back to the beginning.

Am I upset that the wean failed????  There is no question about it, I'm upset, pissed, dissapointed, frustrated, stressed, and down right mad.  I was praying so hard that this would all work out in the end.  But, now I have a little girl who is 2 pounds lighter and I know what a struggle it is for her to gain weight.  2 pound might not seem like a big deal BUT when you only weigh 20 some pounds, 2 pounds is a lot.  Allie currently weighs 25.2 pounds she started her wein at 27.4.

There is a lot more happenng in Allie's little world and I'll blog about it tomorrow but for right now, I need to simply process everything that is happening.  I'm proud of Allie for trying to eat for 41 days and I know she would eat if there wasn't somethin stopping her.  I know Allie isn't starving herself on purpose - we just need to get to the bottom of her medical issues so we can move forward with her eating issues.

Little Miss Allie pretending to paint my bed


  1. Oh Jodi...I truly do not feel it has been a failure!!!! It's a constant journey. I look at this as an ongoing wean. Even though you are going to give her what she can't intake orally you are still working toward the full wean. Decreasing at all is still part of weaning. I just hate to hear your discouragement...cause you know...I know.

    I have no idea why our girls continue to not eat. I don't know why mine will not eat ANYTHING. I don't know why your's will eat 2-4 bites and then refuse to the point of near starvation. I think your recent journey just proves again that our girls are not just being stubborn...you can't go that long without food and refuse it out of stubbornness. There is something going on. At this point, I am inclined to think we are on the "wait it out" path. I can't see anything that has helped Haven greatly, nor can I see anything that would. I am just as lost as you are and I know how devastating it is day after day to not know why your child will not eat.

    I wish I was in your area because I would drive right over and give you a huge hug!! And scoop Allie and Haven up and take them out for ice cream...so I could eat both of their portions : ) hahaha HUGS!!! You are doing a fabulous job. Allie has done great on this journey too. I pray the pain and anger of this current bump passes quickly. HUGS!!!!

  2. I stumbled onto your blog as my son recently got a g-tube as he has some real eating issues. He is only 1 (8 1/2 months adjusted as he was a preemie) and his eating issues are only getting worse by the day. What you said about not being able to make your child do one of the most basic things in the world- eat- hits home. I'm struggling with that now. I hope that you and Allie's doctors are able to figure out what the root cause is. So sorry it's not been easy.

  3. I just started reading your story, and am sorry for your disappointment about the weaning. I totally understand and support your decision and will be praying that Allie regain her weight quickly.