The stubborn determination of hope

Good news. Stella is back to taking in about half of her daily calories from the bottle, just as she did before the recent regression.

However.

My feeling is that the tube is preventing her from recovering completely. I believe that it exacerbates her reflux and makes swallowing more difficult. I found and paid for two medical research papers that support my beliefs. I hope that she proves me wrong, and soon, but I am unconvinced that our current mode of treatment will enable Stella to return to 100% normal bottle feeding. I am ready to take urgent action. I am questioning the medical establishment and ready to try something else.

I learned about and have been in touch with a renowned feeding clinic in Austria. Their cold-turkey approach to tube weaning is radically different that what is practiced here in the states. They believe that the baby or child must drive their own intake, rather than the tube. They share my belief that tubes, over time, worsen aversions and lead to tube dependency. They have studied the topic for over 15 years and have a success rate of 92-95%, depending on the age group. The doctor who runs the feeding clinic told me that Stella’s age is ideal for weaning and that we may be able to achieve it through email coaching, rather than having to go all the way to Austria–although I am eager and willing to go to Pluto if that’s what it takes.

The drawback to this method, what is called the “Graz” approach, is simple. The babies and children treated may not gain weight for a month or two. I believe that Stella would be on the shorter of those timeframes, since she already takes half of her formula orally and the clinic treats many children who are 100% tube fed. Stella will be hungry and not fed until she asks for food. This may seem harsh to some, but I believe it makes sense. I believe that Stella, if able to have more control over her eating and freed from the discomfort and difficulties of the tube, would respond very well. But she would need some time to pull through once the tube is removed. Most doctors here are not willing to let a baby have low or no weight gain for any period of time, so the tube stays in. They, of course, have the babies’ best interests in mind, but they seem beholden to the tube and unaware of, or too willing to overlook, its detrimental effects in the name of weight gain. I believe that any short term weight gain delay would be more than made up for with the restoration of a healthy relationship with food and the resulting appropriate, baby-driven weight gain that would follow.

Stella’s life was never in danger. The tube was placed for therapeutic purposes, not just to help her gain weight. The tube was helpful in allowing Stella to say “no” and be heard, instead of constantly being force-fed, which must’ve been very traumatic for her. The tube took the fight away from eating. The tube has enabled her to make progress. But I believe that we have reached a point at which the tube’s negatives outweigh the positives. And I am ready to take bold action in the face of a lot of opposition in order to do what I believe is best for her.

Cody and I are going to consult with her occupational therapist and pediatrician on this. We will continue to bring Stella to a cranial osteopath. We are going to do some research into the Graz method and the Austrian clinic. And then we are going to decide how to proceed. Of course, in the meantime, we would love to see Stella down bottles left and right, thereby eliminating the need for tough decisions or new approaches.

Even on gut-wrenching days when Stella resists the bottle like it’s full of toxic waste, there is an incredibly wishful part of me that looks to the next bottle as a possible turning point. There is a clump of raw hope that sits smoldering in my chest like an ember in the darkness. It’s always there. And it’s going to light the way to a tube-free Stella.

Advertisements

About amberhj

Mom, writer, worrier. And a stubborn idealist nonetheless.
This entry was posted in Bottle feeding progress, Cranial osteopathy, The tube and tagged , , , , , , , , , , , . Bookmark the permalink.

2 Responses to The stubborn determination of hope

  1. Regan says:

    I am no expert but this seems like a reasonable theory. The fact that Stella already takes the bottle pretty well and that her current weight is good seem to work in your favor. Hopefully your doc and the OT will be positive as well.

  2. Grandma Karen says:

    I applaud your resourcefullness! I can’t wait to hear how Stella does in the weeks after the tube is removed.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s