Thursday, July 21, 2011

Day #29 - Worst Therapy Day Yet

It is day 29 of our tube wean.

Allie had a weight check at her GI's office this morning and she was 26.4 pounds.  She has lost 1 pound since we started the wean. 

Allie had feeding therapy today and I have to say, "it was the worst session to date".  Allie started out eating a couple bites of a bolognie & cheese sandwich, however she quickly made her mind up that she wasn't going to eat.  I tried everything to get her to take a bite and she simply wouldn't.  We tried bribing her with new toys, etc. we tried everything.  So, I had to leave the room and let the therapist try to get her to eat.

I sat outside the door on a little bench and listened to Allie screaming.  We had 25 minutes left in our session and I heard one of the therapist tell Allie, "Allie, you have to take 5 bites or we will be here for 25 minutes.  If you take 5 bites, we will go get mommy".  I remember thinking there is no way I can listen to her scream for 25 more minutes.  I knew they weren't hurting her in anyway, but just knowing that I could provide comfort for her yet I wasn't allowed was killing me.  10 minutes went bye and Allie is continuing to scream.  I had all I could do to hold myself back and tell them it's over - we were going home.  This wasn't the first time I have sat and watched (or listened) to therapist or doctors try to feed Allie - we had a week of this back in October 2009.  It was awful and I remember the days like they were yesterday.

Allie never did take a bite today for the therapist.  She screamed for 25 minutes straight except when she needed to catch her breath.  I sat there the whole time and listened to her.  While I sat there with tears rolling down my face, I couldn't help but think of our upcoming appointment at the Children's Hospital of Wisconsin in September.  We are planning to have Allie evaluated to see if she is a candidate for the feeding program/intervention.  Their feeding program/intervention is a 2 week inpatient program and from my understanding, it can be very brutal on the kids (and parents).  While listening to Allie scream today, I'm now second guessing the CHW feeding program - is that really the right program for my little Allie???  There is no clear and simple answer to that question and Matt and I will have to try and figure it out. 

I guess after hearing Allie screaming today with her therapist, I question whether bribing begging, convincing, forcing and pleading with Allie to eat is even worth it.  If she hates eating that much, why don't we just tube feed her?  So many new questions popped into my mind today and I'm really struggling with sorting through them all.  I have to remember there is absolutely nothing wrong with tube feeding Allie - it keeps her healthy.  I know my long term goal is to get her off the tube but who knows where this long road will lead us.  I'm not making any decisions this minute but I have a lot of thinking to do.   A lot of things to sort out and try to figure what out what is best for our little Allie Rae.

Allie at 1 month old - little peanut!

1 comment:

  1. Oh my...I just did the longest post of my life and then the system lost it...AHHHH

    Anyway-I want to send you HUGS a million times over!!!! I KNOW where you are in this right now. And I know the CRAZY emotions of it. I just want to encourage you and let you know that you are doing the BEST job for Allie!!! You are doing the BEST possible things for Allie! Because all you do is from your heart and for the sole purpose to help her.

    Look at where you are!!! She has gone a MONTH without a tube feed!!!! That's MIRACULOUS!!!! BUT...if she needs to start tube feeding again-that is NOT a failure!!! Why did we get the tube for our girls in the 1st place??? To help them grow, gain weight, and be healthy!! THAT is what you would be giving her if you give her a tube feed again. ONLY health!! NOT failure. Allie will make it-just like Haven will one day.

    Oh, I just hurt for you because I know the stress and pain of it and how much it hurts the mama heart. I just want to say in regard to the inpatient thing, that either decision you make will ultimately be fine. If it doesn't help her and even if it stresses her will not kill her or prevent her from ever eating. On the flip side of that...if you don't do it now or ever, it will not be the reason she doesn't eat. Both of our sweet little girls WILL eat one day. HUGS HUGS HUGS!!!

    I can only imagine how stressed you are right now. Try to take a step back and keep it all in perspective. I know how lost I get when I am in the midst of it all-I start making ever decision into THE decision...but it's all just steps we are taking to help our girls. HUGS HUGS HUGS!!!!

    If you need to vent, scream or cry...message me any time!!!!! HUGS HUGS HUGS!!! And you are doing a GREAT job mama!!!! A GREAT JOB!!! Allie is so lucky to have you as her mom!!