Gwen’s Ol' Buddy Returns With Success

Well, Gwendolyn had a great visit with the Occupational Therapist today. As you can see from the photo, she got some nourishment thanks to a bottle. It had been about a month since that was last tried. If you remember, she sounded so bad during that go-around with a bottle feed that the O.T. quickly ended the experiment and ordered the insertion of a permanent feeding tube to replace the NG-tube that had been administering feeds through her hose.

In a way, there was a lot of apprehension from Mom and Dad about today’s visit. Our last visit to the O.T.’s office with Gwen was also for a “routine” feeding observation… But that ended up with her being unexpectedly admitted to the hospital. This time, things honestly couldn’t have gone any differently.

Today, the O.T. gave Gwen an ounce of breast milk thickened to the consistency of honey. This was the thickness that Gwen did the best with during her swallow study in November. In less than 10 minutes, she devoured the liquid. Never once did she give off her patented pre-jaw extension squeak or choke. The O.T. was very impressed and said that she was amazed at how well Gwen did.

Moving forward, Gwen will have an once-feed similarly thickened between 1-2 times daily. She’ll then have a follow-up in a couple of weeks to chart her progress. This is obviously a step in the right direction. We’ll caution that if this works, we unfortunately won’t be able to have the current feeding tube removed altogether and only bottle feed until she’s able to have another swallow study. And, because of the radiation involved, she can’t partake in one of those again until the end of May at the earliest. This is done because they need to ensure that Gwen isn’t aspirating formula into her lungs anymore and that can most accurately be done via this swallow study. Still, it is obviously an encouraging development and one that we hope becomes more and more frequent until she can get the feeding tube removed all together.

For those optimists in the group, this is a case of the frustrations this last month being worth the strife. The Lord indeed works in mysterious ways!!! Obviously, we wish Gwen didn’t require that second jaw surgery when the first one unexpectedly shattered. It would have been wonderful to have had her at home for Christmas and reunited with Braelyn. Still, the additional length gained in her jaw when her first device broke and the second extraction procedure was necessary has made a tremendous difference.

It was evident by the x-rays the doctors showed us last week that her throat was considerably less obstructed thanks to this additional procedure. Today, it became even more obvious how much better her situation had become as we watched Gwen feed. That previous bottle feed Gwen had that went so wrong took place after her jaw was fully extracted by the initial device. Knowing how poor she did during that feed and fully aware that she was already extended a complete 20 millimeters at that point, it’s obvious that while the first procedure fixed her breathing difficulties it really didn’t help her feeding issues. Now, there’s so much progress and hope that these extra 12 or so millimeters gained by the second jaw extraction have also positively affected Gwen’s feeding limitations. It is amazing to think how much influence can be had by something about the length of a centimeter.

That’s about all the update we have for now… While we are a long way from the summit of Gwen’s journey, we’re a lot closer to finishing our climb atop this mountain.

Talk to you all soon!!!