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Will Rosie Ever Eat by Mouth?

The challenges Rosie has had to overcome are very serious. From open heart surgery to an unexplained seizure disorder to a complete skull reconstruction, she has battled it all and continues to amaze us. Even with this history in her past, Rosie could eat by mouth on day. We believe this and we will not stop trying for it anytime soon. 

We can only speak to the hopes and goals we have for Rosie. Every tube-fed child has a different story and different struggles. But we truly believe that one day our girl will enjoy food with the rest of the family.

 

 

Expectations

Any therapist or doctor who would assess Rosie would very likely tell us that there is very little chance she will eat by mouth. I know this and I’m not naive to it. I’m not ignoring it either. I simply believe that she could eat some portion of her caloric intake by mouth at some point in her childhood. 

Many parents of G-Tube fed kids are trying to teach their children to eat for the purpose of having the tube removed becaus

e it is no longer necessary. We are a little different in that we know that there is a good chance that Rosie could have another major surgery in the future and the tube will likely be needed at that point. We also know that we could literally avoid a hospital stay with the tube in an illness in which she might become dehydrated and otherwise admitted for fluids. These things are important to us, so, if we aren’t trying to get rid of the tube any time soon, what are we trying to do?

Simply put, I’d like Rosie to enjoy a sizable amount of her food by mouth rather than by tube. Period. That’s it. 

The Plan

The plan for getting Rosie to eat any amount of food by mouth is still not set-in-stone. For many months, I’ve been researching strategies for weaning children from the tube. This looks exactly how you’d think it looks. You begin to cut back calories from the tube and offer food orally pretty much around-the-clock. You pay attention to hunger cues and hydration needs and you adjust as necessary under the supervision of a medical professional. Ultimately it’s best to wait until the child is a good size and weight (CHECK!) and we are out of cold and flu season (STILL WAITING FOR THIS!) before trying to wean. This is because there is some weight loss expected at first and having a bout of weight loss followed by a serious illness can compound the dangers of both. Timing is important. Our plan is to try some sort of wean from the tube in the spring or summer. We aren’t sure what exactly this will look like yet. We aren’t expecting to have Rosie eating her entire diet by mouth any time soon, only wanting to see what she is able to do when we take this approach. 

It’s a hard thing to imagine, but remember that Rosie’s body and brain have never truly felt hunger. Sure, when we’ve had to wait to start a tube meal a little late, she probably wanted her belly to be full, but honestly she has been well fed without any work of her own for over two years now. Rest assured Rosie’s brain KNOWS that her food is coming without any effort on her part, so there’s no need to trouble herself with the work of accepting the food orally, pushing the food to the back of her mouth, swallowing, etc. We will never really know what she can do until she has felt hunger. This is a hard reality of teaching a toddler to eat for the first time, especially one who has endured as much as Rosie.

The Current Course

In our current day-to-day we are feeding Rosie via tube and simultaneously giving her tiny tastes of purees. Now that she is sitting next to big brother at meal times, his oral eating is helpful. I know she sees him and is learning. To give you some perspective, she doesn’t necessarily swallow any of the food we put on her tongue or lips, nor doesn’t she lean forward and open her mouth for a bite, the way a typical child would. The main idea around our meals is to engage as many senses as possible during meal time. We want her smelling the food, hearing the “Mmmmmmmm” after we take our bites, tasting as much as she’ll tolerate, and so on. We want her experiencing as much of a meal as possible. We also want her mouth to be stimulated while her belly is being filled by her tube. This will be signaling her brain to connect these two actions. i.e. My mouth has food in it and my tummy is happy afterward.

We will stay the course with this until we feel it is time to start an actual wean. 

Disclaimer: Please don’t hear what I’m not saying here. I am not a medical professional, only a parent doing what I think is best. Consult your doctor before making changes.