Wednesday, June 29, 2011

Day #6

Allie had a much better day today.  As I sit back and look at the last couple days, I cannot believe that I am actually watching Allie consume so many calories throughout the days.  This is something I have been dreaming about for 3 years.  I know Allie isn't consuming enough calories to gain weight yet but she is eating more than I ever dreamed possible at this point. 

If it were not for my "motherly instinct" I would still be feeding Allie 1000 calories a day through her feeding tube and not allowing her to feel hungry.  It almost makes me upset because I'm wondering how long I've been feeding her through her tube and I haven't really needed to.  I'm not saying she still doesn' need her feeding tube, I'm just saying she doesn't have to be so dependent on it like we thought. 

Stopping Allie's tube feedings cold turkey was a crazy decision I made.  My motherly instinct was telling me it was time - at least try it and see what happens.  All of our previous doctors at Children's Hospital of Wisconsin told us time and time again never to stop cold turkey - it was bad for the child.  However, after tons of research I had made my decision to try to wean Allie on my own.  Honestly, I was tired of doctors, nurses, specialist, etc always telling me what to do with Allie, however nobody could figure out why she didn't want to eat.  Allie has seen more doctors, specialist, and therapist than I care to remember and quite frankly I was getting tired of it.  Some of them helped but nobody could give us answers.  I know Allie's medical days are not over, however taking this little break from doctors and doing things according to my "motherly instinct" is proving to be a very promising step.

I would like to make one thing clear - Allie is in no harm with this tube weaning attempt.  I know most parents don't cut feeds cold turkey but I felt very comfortable doing this.  I talked to Allie's GI doctor and he was in agreement to give this a try at home.  We are making progress slowly as I continue to learn more and more about tube weaning and continue to do research on it everyday.   I have spent the last 3 years researching and doing everything possible for Allie and her medical issues, I can assure you I would never do anything now to jeopardize how far we have come.

Allie had another good calorie intake day yesterday.  Here is her food breakdown

25 cal - cereal
60 cal - Eo28 Splash
80 cal - applesauce
70 cal - piece of cheese
225 cal - 1/2 of a bologne sandwich
30 cal - E028 Splash
120 cal - E028 Splash
20 cal - couple bites of hamburger
160 cal - chocolate milk
25 cal - ice cream

Once again, I am totally amazed at how many calories Allie is consuming.  I know this isn't easy for her and at times it's down right frustrating for both of us but we are staying a float and that's what matters. 

This is Allie a couple days before we started her tube weaning


  1. Maybe her gut has recovered from all of the vomiting and formula and it's much more comfortable to eat now...just a thought.

    Good job Jodi!!!! (and Allie!)

  2. I am so stinkin excited for you guys!!!!!! I am proud of you for following your mama instincts! I am just so happy to hear this amazing progress for Allie! And OF COURSE she isn't being harmed! If anyone has ever read your blog (or I'm sure if they know you IRL) they KNOW how much you love Allie, how much research you've done, and how you would ONLY do the very best for her. I think you are doing an amazing job! I would hire you in the medical field after all of got an education in hard knocks : ) HAHAHA You've probably researched all of this more than the specialists we all go to. LOVE the strength of a MAMA!!!!

    Hang in there-cause we are all in awe and supporting you!!!!

  3. Hi Jodi, I saw your link in the FB pediatric feeding disorders page. I just want to say that I admire you for taking things into your own hands. I can definitely identify with this..."It almost makes me upset because I'm wondering how long I've been feeding her through her tube and I haven't really needed to."

    It's a stressful time but so worth it! Good luck!