about two months ago we decided to cut his feeds back by 10% to see if he could swallow enough food to maintain or gain weight. i was absolutely shocked at his last check up when he had gained over two pounds! that means he has been eating enough orally to gain weight which was such a pleasant surprise.
when otto was first born his heart was working so hard that he could not have the typical suck swallow breath rythum that is needed for a newborn to thrive. he also had open heart surgery at 2 months old and was completely tube fed for a solid 5 weeks before and during his hospital stay. because of this otto was given a feeding tube that went through his nose and down into the opening in his stomach. that is why almost all of the photos of him from birth to 7 months has tape on his face. we finally ditched the ng tube for a g tube placement february of 2018 which was an absolute answer to prayer. I could tell that otto was instantly more comfortable. if you are the parent of a child facing a g tube situation know that in our experience it is what finally got otto to turn the corner from his aversions to having his face touched to where we are today. it’s scary and it’s a surgery no doubt but it is SO much better than an NG was and I wish we would have pushed harder earlier for it.
when otto first got his g tube i remember being so so scared to hook him up to his feeding pump and then have to change it. now i’m literally hooking him up in his sleep and as he is riding away from me on his bike. we can all do hard things.
the progressions of ottos oral feedings have been slow but i’ve learned it will all be in otto’s and God’s time. we went from not being able to touch his face, to him touching food, to licking food, to biting and spiting food out, to swallowing half the food he puts in his mouth to swallowing all the food he puts in his mouth.
the other day i ordered otto a chicken nugget happy meal and he ate almost half of it. i was astonished when i went to get him out of the car and there he was just chomping away. he had swallowed everything. it was just unreal. i fought back tears because I didn’t want him to think I was sad. (two year olds pick up on everything) and just sat and thanked God.
so now what? we were going to food therapy two times a week, then once a week and now once a month. we have our once a month check in this week and I am so excited to show Mrs. N otto’s progress. we also cut back his feeds even more so we are about 70% tube fed at the moment. We have a check in with neuro development in two months that will give us a good answer if we can cut back even more.
every child’s journey is different and every child will do what they want in their own time. if i could go back and give myself some advice at the start of this journey I would say patience my friend. you cannot force it and you cannot will it. they will do things in their own time. be diligent and persistent but not forceful. you’ll get there.
thank you all so much for your questions and encouragement for otto. know that your questions are never an intrusion. i am happy to answer them! before having otto feeding issues was something i never even really considered happening or being affected by. now that we have our new goal ahead of us we are enjoying otto learning new foods and textures as we make our way to our next appointment.
photos by the lovely and talented Ashley of Sincerely Ashley
otto feeding update