It’s been a while again since i’ve given an update on otto’s feeding journey. For those who are just tuning in you can read the full history here but long story short: Otto was born with a heart condition that made him have to work to hard to eat so he had an NG (feeding tube through the nose) for the first 7 months of his life and now has a Gtube (Feeding tube button directly in his stomach). His feeding issues are not physical, it is all emotional (sort of). Our first hurdles were aversions we had to get him comfortable with us being around his face and him putting things in his mouth. He associated a lot of facial touch with the uncomfortableness of inserting the NG tube. Then it was building up the stamina to eat (chew, swallow), then it was introducing hunger. Can you imagine being hungry and not knowing what that feeling is or why it’s there? That still blows my mind. Finally now we are in this hybrid of navigating hunger, building stamina to eat an entire meal to which he feels satisfied (and has enough calories) as well as VARIETY.
When we started this year Otto was getting 120ML of formula 3x a day (breakfast, lunch, dinner) and then 42oML of formula over night all via the Gtube. We slowly started cutting back around January cutting out 60ML at each “feed”. As otto found more foods he liked we were able to cut back even more.
Since we have been home with him so much over the past two months I have been able to keep a close eye on the quantity of foods he is eating and last week we were able to cut out all day feeds and have a 240ML feed before he goes to bed. We started this a week ago and have to check back in with his nutritionist in about another week to see if he’s maintained his weight.
In my opinion we have two large hurdles to overcome. 1.) getting him to take his medicine orally and 2.) the variety of foods he eats which is pretty typical of toddlers but with otto we have to tread a little more lightly.
He loves pizza, chicken nuggets, veggie straws/salty chips, birthday cake and cookies. (SHOCKING). We have been working on “food chaining” where you start with pizza, then move on to different brands of pizza, different brands with toppings of pizza and then on to other food groups. We are at that last phase where he eats the pizza with all the different toppings.
I know a lot of this sounds like typical toddler, who wouldn’t want to binge out on chicken nugs and pizza? The trick is to not force it and let him feel safe and in control so we don’t take a step back in his aversions. He is a very brave boy and is doing so well. We are so proud of him and honestly this day seemed so far off for so long. We are hoping to be completely free of Gtube feeds by the end of 2020 (might be the only redeeming quality of this year).
Otto (and I might be biased but..) is the most inquisitive, smart and charismatic kid I have ever met. He is so full of life and excitement and curiosity that these feeding issues that once seemed to be a dominant force in his life are slowly trickling away. He loves playing with my old camera asking us to say “cheese” and “sit for pictures”. I finally bought him a real kids digital camera that he can see the photo he takes and he has been LOVING it. I love watching him explore the farm and befriend the animals. Even though this pandemic royally sucks I am so grateful that we get this precious time with him to watch him grow and learn and achieve goals with his feeding that we felt would never come.
I’ve said this for a long time now but if I could just go back and tap 2017 me on the shoulder I would tell her that Otto will do everything when he feels safe and ready. Your priority and #1 job is to provide that security and love and he will figure it out. Day by day we are getting there! Now excuse me I have to go put some chicken nuggets in the oven so by the time he wakes up they are cold. He gets very upset when we put things in the oven. “They not not go into the oven mom”.