Saturday, July 17, 2010

GI Update

So Friday was a bit exhausting, but I'm so glad that we were able to get The Chubs in to see Dr. N 3 weeks before originally scheduled.

This is what I ended up getting from the appointment:
  • The Chubs has only gained 2 oz since June 25th
  • She's lost .5 oz in the last week
  • We are now concentrating her milk to 26 cals/oz instead of 24
  • Her last tests all came back normal (blood, urine, stool)
  • We'll give it 3 weeks to see if the Prilosec works any better for her than Prevacid
  • If it doesn't we'll schedule a PH probe and endoscope to see if she has inflammation of the esophagus that may be irritating her
  • If she continues to eat poorly and not gain or gain very little, they will suggest an NG feeding tube which we will be instructed on how to place
  • I need to see a therapist for the toll this has taken on me emotionally (feeling like I can't provide for my child's basic needs - feeding her). And that it is not my fault that she is not eating well (the doctor repeated this many times and told me to get rid of any guilt I may feel).
  • Feeding Therapy is very important for The Chubs and waiting 6-8 weeks to get in, to me, is unacceptable (that is 1/4 of her life). A social worker is working with us to try to get her in sooner because of the severity of the situation and her age.
  • I need some chocolate. And lots of it.
So that, in a nutshell sums up where things are right now. Monday is the Early Intervention evaluation and I'm trying to prepare for it emotionally. They only accept children that are below the 10%ile in any given area. What if The Chubs is the 11%ile? I think I'll have a break down. That, in my opinion, would be the absolute worst. More to come on monday ...


  1. I'm so, so glad you got in early. It sounds like you saw a wonderful doctor. I'm glad it was reiterated to you that this is NOT your fault. You're an amazing mom, Ellie. The Chubs is a lucky girl and she'll know that one day. I really hope the Prilosec kicks in and starts working so that you don't have to go the feeding tube route. What an exhausting, emotionally draining experience this has been for you. I wish there was something I could do or say. I think of you guys all the time. ((HUGS))

  2. Oh Ellie, I am so sorry that Lexi's weight didn't continue to go up- I know how much of a rollercoaster it is to keep track of the weights and how crushing it feels to get way lower than you want. But I am glad they could get you in at least earlier than the original appointment.

    I am also glad that the GI told you it is not your fault over and over- if anything, think of how much less Lexi would eat and weigh if you didn't bust your butt to get her to eat as much as she does. You have huge obstacles and Lexi is very lucky to have a mom that works so hard to get her to eat and gain as much as possible. Not every parent would work as hard as you at it.

    I'll be thinking of you on Monday and praying for the best possible outcome.

  3. Oh, Ellie, I can feel the draining heaviness in your words. As Kerri and the doctors have said, and I join them in saying, this is NOT your fault. Easier said than done, but you need to free yourself from the guilt. You are doing everything you can for the Chubs. I have been praying for you and your family and will continue to do so. ((HUGS))