Every day for two weeks we had an appointment at 9am and at noon, one with a speech therapist and one with an occupational therapist. During these appointments, we would have a meal with Eden and they would teach me different techniques and introduction styles to try to get Eden to eat and experiment with new textures. The goal was always to focus less on the number of bites she takes, and more on just having a positive interaction with her food so that over time she would begin to enjoy eating.
Each meal we would give her the choice of a "preferred" food, along with one or two other news things. She would get to choose the order of the food she wanted, but we only focused on one food at a time. Rather than push her to take a bite, we would have to give her other safe options, but still interactions with her mouth like licking it, or tapping it on her teeth, or kissing it. All the while, making sure we were just having an overall positive experience.
In the beginning she was pretty cooperative and would do what the therapists asked her to do (licking the food, taking bites, etc.) but once she started to get a little more comfortable with them, they began to see the incredibly stubborn personality that rears it's ugly head! She tries every technique in the world to try to gain control over the situation, and she knows that this is something she can choose not to do, despite our theatrics to convince her that it's a good idea.
To make an incredibly hard and frustrating situation even worse... we had little brother joining us in these sessions, and while we were doing everything we could think of to persuade Eden to eat, Bentley on the other hand, was screaming and clawing his way to eat all the food. Additionally, because my sister lives too far from the hospital, we were just staying there in between sessions so Bentley never got a good morning nap, so by the afternoon session he was grouchy and a huge distraction. It made things interesting for sure.
For the two hours in between sessions, it was hard to find fun things to do to keep Eden happy, and hopefully get Bentley a little cat nap. We took walks outside around the hospital, played in a little toy room, and read books. There's a little library in the hospital, so we spent a lot of time in there, but even that got old pretty quickly. The kids really liked the bean bag chairs though and sometimes gave me a little break too.
By the end of week one, I was feeling incredibly discouraged and frustrated by it all. Brad came out for the weekend, and I was a horrible, grouchy mess the whole time he was there (sorry Brad!). For three years now I have struggled over countless hours upon hours to get Eden to eat, but I always knew that eventually we would get to the intensive therapy and I would finally get consistent and experienced help in an intensive setting to really kick start her eating and help her overcome so many of her aversions. I had unrealistically high expectations though that it was going to work miracles. I went into the therapy with the goal of only needing the feeding tube at night for extra calories, but it was evident to me early on that I was way off. We left there only reducing her formula g-tube feeds by two ounces a day (she gets a total of 32 ounces a day), hardly a change at all. Given her medical history and the intense ups and downs we have dealt with, I definitely know better than to get my hopes up so high only to have them crushed with disappointment, so I'm not sure why I let myself go there with this. But I did.... and it hurts.
Out of everything we have experienced with Eden, this eating stuff has by far been the most difficult and frustrating. The longer she goes without eating, the worse it will get too so I constantly have this pressure that I need to be trying harder, or doing something better to make this work now. I can't imagine it getting harder, and I'm exhausted by it all already so I just want to fix it now! I hate that she struggles with it and therefore chooses to not even try. I hate that I'm trying so hard, and she just continues to push back against me. I hate that I feel so much anger and frustration towards her sometimes when we have a particularly rough mealtime interaction. At the table, things need to stay positive so she has a good experience, so I keep all these negative emotions inside and the frustration is boiling over into unrelated parts of my life. I hate that I have less patience overall, and I hate that I vent and take it out on Brad. So many times I just want to give up and walk away.... but I can't... that's not what mom's do because if I gave up, who would help her?
So many people have said to me, "just don't give her that milk. Eventually she will get hungry enough and she will eat." If only it were that simple. Kids who are g-tube fed from infancy never learn the patterns of hunger and satiation. They never learn to recognize what feeling hungry really is, and associating that feeling with putting something to their mouth. Her mind doesn't understand that what she is feeling is a need for food, so starving her will never be the motivation to get her to eat. I've skipped Eden's g-tube feeds before, and she doesn't ever eat. Starving her won't work. We just have to learn to teach her the patterns of feeling hungry, eating and then feeling satisfied. How do you teach that to a stubborn three year old though? She struggles with swallowing, so she chooses to not even try.
By the end of the two week therapy, she had made some progress with at least interacting with foods that I have never gotten her to even touch before. She wasn't doing much actual eating though. And unfortunately, since we have been home, it's only gotten worse. Spending two weeks there though was definitely worth it because it at least established consistency, and a routine that I continue to follow. At each meal, she comes to the table, we have our positive interaction with the food, she gets her g-tube feed, and then she leaves the table feeling full. I've also started to relieve myself of the intense pressure I've felt to get her to eat. I'm doing my best, and I'm having to let go a little so I don't get so incredibly frustrated. Hopefully over time, the actual eating itself will improve, but we have to start somewhere and we have to smile while doing it.
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