The biggest question I have been hearing since we got back is "was it worth it?" and the answer is most definitely yes. In two weeks time, Aubrey went from eating 0-200 calories a day by mouth to eating about 800-1000 calories a day. It was astonishing and fun and scary all at once (if you're wondering about the scary part, it was just hard to believe this incredible change could stick!).
A lot of people are curious about what makes Seattle's program so effective and the answer is really pretty simple - they are willing to let the kids go without very much food for a period of time so that they get very hungry and this hunger eventually drives them to eat. While this seems like a very simple concept, not many doctors are willing to cut back on a child's g-tube feeds because they are afraid the child will lose too much weight, get sick, or something bad will happen. In the past, our GI doctors have allowed us to cut back a couple ounces here or there to see if we could get Aubrey hungry, but as soon as she started to lose even a little weight, they would tell us we needed to feed her more. Karen, our occupational therapist in Seattle, told us that in her experience 80% of what kids are being fed through the g-tube needs to be taken away before they experience enough hunger to be motivated to eat, which is why those couple of ounces we took away in the past never made a difference in Aubrey's desire to eat. This time, we began slowly cutting back on the formula that went through Aubrey's tube the Wednesday before we headed out to Seattle, replacing it with water to keep her hydrated.
By the time we arrived in Seattle and started doing 6 meals/snacks a day (three on our own, three as feeding therapy sessions with Karen) Aubrey was good and hungry and she started to eat almost immediately. We had an amazingly good first week and then on Saturday morning she woke up with a fever and retching (she had a surgery when she was 8-months-old that keeps her from throwing up, so she gags and retches when she is trying to vomit). Saturday she was sick and slept most of the day, which meant she ate absolutely nothing. Sunday and Monday were not much better, which was really tough for me since we were still giving her such a small amount of food through her tube, but Karen assured me she would come out of it okay and it was important to keep her hungry. Tuesday and Wednesday Aubrey started to eat more and by Thursday and Friday I was so thankful to see her back up to eating almost as much as she did the first week.
Aubrey's biggest challenges now are learning to get better at chewing and swallowing and getting more comfortable with drinking liquids. Karen said it was quite common for kids be more adept at either eating or drinking and to struggle with the other one and Aubrey definitely prefers eating over drinking so in time we will need to work with her to get her to take in more liquids. She also has a hard time knowing how much food she can handle in her mouth at a time so she will put a lot of food in her mouth and then not be able to chew and swallow it, so she will spit it all out and then start over again. Karen assures us that she simply needs to practice and over time she will learn how to pace herself and get more brave about chewing some things that require a little more work (she especially struggles with things like chicken or meat or other things that require more vigorous chewing).
Now that we are home, we are keeping up the schedule of 3 meals and 3 snacks a day (eating every 2-3 hours) with each feeding session lasting ideally 20-30 minutes, but right now sometimes up to an hour since Aubrey is a slow eater. This is pretty intense, as you can imagine, and makes me feel some days like all we are doing is making meals, eating, cleaning up, and then starting all over again. In addition to her meals, we are currently feeding her 6 ounces of blenderized diet daily to supplement what she is taking by mouth. If you are wondering, blenderized diet is just what it sounds like – several different foods blended up in the blender and then syringed through her g-tube. This 6 ounces of blenderized diet replaces the 32 ounces of formula that she was receiving daily before we left for Seattle, so you can see from this alone that she has come a long way in how much she is eating.
As far as where we go from here, it’s all up to Aubrey. We are weighing her weekly to determine how to proceed (she has only lost about a half of a pound through all of this, so that’s pretty good). If she loses too much weight, we will add in more blenderized diet to supplement. If she stays steady, we’ll stay where we are at and wait for her eating to pick up. And if she gains weight, we’ll start to cut back on the tube supplementation and then eventually hopefully be able to cut back from the 6 meals/snacks a day because she will be eating more at a time. Of course the therapists can not say anything for sure, but we were told that it looks hopefully that Aubrey may be eating everything she needs in the next three months or so. And then, after three to six months of not using the g-tube, they will finally let us remove it. Words can’t express how much rejoicing there will be in the Lehmer household when that day arrives!
This post has gotten very long, but I do want to end by expressing how much gratitude I have towards all of you who have been thinking about us and emailing and leaving messages on facebook and praying for us. While I have not had time to respond to all of you, it has really touched me to hear from so many people (even some who I have not talked to in many years!) and to know that we travel this road surrounded by such a great crowd of family and friends supporting and loving and encouraging us. So thank you, to each and every one of you who follows our story! We want you to know we are happy, and hopeful, and looking forward with great anticipation to a g-tube free future. Way to go Aubrey!
