i was laughing to myself the other day as i was going around decluttering my house and organizing my books. i was getting to the “baby cookbooks” i bought before otto was born, before the “heart thing” before we knew what we were in for. i laughed at myself for a moment. not only did i think that my baby would love to dive in to pureed curry carrots but that i would actually have the time to whip up these exotic concoctions. i had this vision of the three of us sitting down to dinner and our baby just diving right in reaching for what we were eating. i laughed because how different things are right now.
throughout ottos 15 months of life on this earth. yes, 15 months. i can barely type it, it breaks my heart. i have learned just how many people have children with feeding issues, oral aversions and all the other things that can cause children to just not eat.
before i go in to what i wish i would have known before embarking on this journey let me tell you what the root cause of otto’s feeding issues are.
otto was born with a heart defect known as AVSD or AV Canal. meaning there was a hole in his heart at birth that was too big to ever fuse together. he also has a mitral valve regurgitation which lets blood leak back through his valve instead of his valve closing completely. when otto was born these heart defects made it so so hard for him to breath. his entire tummy would suck in and out with each breath. when he was born he would take a bottle but the work of suck, swallow and breathing was just too much for his little body. he was born with the ability to eat he just didn’t have the energy to do so.
we would always try to feed him by bottle first until he would literally sweat so bad and fall asleep from exhaustion. it was absolutely heart breaking but we didn’t know exactly how bad of a condition he was in. the weeks leading up to surgery we feel like we gave up. we stopped forcing a bottle in his mouth because not only did it exhaust him, he would cough and puke it up. so we just fed him via his NG tube. The NG tube is the tube that goes through the nose down the throat and in to the opening of the stomach. if it sounds horrible, it was. but it kept him alive, rested and fed. we struggle with feeling like we gave up but if I really talk myself through it we didn’t give up, we let our sweet boy have rest. hindsight is always 20/20 and i struggle looking back to think if i would have done something different.
otto did not have a bottle by mouth for two weeks leading up to his surgery. we did have a speech therapist coming to our house twice a week to work with him and keep his mouth muscle tone strong. once otto was in surgery and then out of surgery he did not get fed by mouth for almost three weeks. so if you think about it otto was on this earth for 3 months and over 1/3 of his life he never ate by mouth. he never lost the physical ability to eat but he did not know how to get full other than that every three hours he had a tube feeding. he pretty much never felt hunger. if you do not feel hungry why bother with a boring bottle?
since his last hospital visit (last october) we have been working with a wonderful therapist in grand rapids and have finally been making some amazing progress. otto is a strong willed boy but he has a stronger willed mama and we are up to 30 bite/licks of applesauce at dinner and we like melted ice cream and apple puff sticks. this might not seem like much but 5 months ago i could not even touch his cheeks without him screaming and crying. i have faith that we are on our way to kicking this issue but the road to get here has been long. and if he has surgery soon again we might have to reset. but i know we’ve come this far and we can and will get here again. i tell myself otto won’t be 30 his mom feeding him through his G tube (the feeding tube he has in his stomach now freeing his face).
throughout this journey there are things i wish i would have known and my eyes have been open to others who are dealing with different levels of severity of feeding issues. i’ve been wanting to put into words for a while things that have and would have helped me get through these things as a mom of a child with feeding issues.
- you are a good mom. not being able to feed your baby in a traditional sense creates a panic sometimes that we are not a good parent or that we are missing some key element of being a nurturing mother. remind yourself your child is being fed and that is the most important part. it doesn’t matter if they only take a bottle, breast, tube or apple puff your child is getting the necessary nourishment by whatever means possible and that is what makes you a good nurturing mother.
- it’s ok to be angry and frustrated. i have found myself several times zeroing in on a baby that just takes a bottle so effortlessly or dives in to their parents plates at restaurants and it’s easy so so so easy to be so angry that it does not come that naturally to your child. I WANT otto to experience these things, how fun food is. I WANT otto have those first tastes and for this to just come easy to him. it’s easy to feel like you are robbed of an experience because in a sense you are. and for so long i told myself to snap out of it but i think it’s important to recognize those feelings, grieve a bit and keep moving forward. the more i ignored and told myself i’m being ridiculous for being angry the more intense those feelings grew.
- adults do not understand feeding issues and are curious. it took a long time for me as otto’s mother to wrap my head around his feeding issues and oral aversions. we as adults who know what hunger is do not have to think through the feeling. we know how to get full it is our survival instinct. for a baby who never had to be hungry because they were fed through a tube they have no clue that is how you get full. and it takes a long time to learn that skill and instinct. i feel sometimes it’s like learning a second language. it’s so much harder to learn another language as an adult than a child. it’s not our instinct. people toss around the term normal a lot when asking questions about feeding issues. when will otto eat like a normal boy? it used to make my blood boil inside. but taking a step back, people are just curious. feeding issues are hard to describe and they are not being cruel they are just being curious. if you are comfortable take the time to describe and tell them about it. the more others understand where you guys are the better they can be as support for you.
- most people will not get as excited as you when your kid licks an apple slice. this goes back to the “most people do not understand feeding issues”. they are not in the thick of it with you every day. they don’t see the countless therapy appointments, oral exercises, thrown spoons, tantrums and discomfort. most don’t realize how hard you all worked and how far you have come to lick that apple slice, spoon, toy etc. but YOU do and you need to celebrate that. feeding issues are a journey and there is no quick fix. there are peaks, valleys and plateaus and you don’t understand these big achievements if you are not “in it”.
- if something is not working, change it. we loved and adored our first therapist but after a few months nothing was really happening changing and i think we were all exhausted. while it was hard we changed therapist and went to a different practice. this worked awesome for otto. this therapist had new techniques and approaches that otto really responded to. each child is unique and requires a different approach to therapy. trust your gut and if something isn’t working, change it up.
- this isn’t forever. there were a lot of days i spent anxious about the future. being in this journey with otto and seeing his slow but sure progress makes me realize this isn’t forever. this is just the way it is for now. and this is our hurdle and we are going to get through it. every step, be it small is a step forward. even two steps forward and one step back is still a step in the right direction.
- it’s ok to see the silver lining. am i happy my child has oral feeding issues? yea no. but it’s ok to enjoy a few of the minor benefits to a feeding tube. otto has slept through the night since he was 3 months old. like once he is asleep, he does not wake up. because he’s not hungry. he was fed every three hours until 5 months old when we could feed him at 11pm and then at 6am and then 9pm and 9am etc. also we can go for walks while he feeds. we have had some awesome moments together walking around town while he feeds. while of course i would rather pause for a bottle it’s ok to enjoy the convenience of a feeding tube.
- if you have to change a feeding tube it’s not the end of the world. when i was pregnant i could not fathom the thought of boogers. puke and poop was fine whatever but snot has always made me throw up. haha again life! i quickly got over that when i learned how to change an NG tube and later a G tube. but here is the thing, when the doctor says you can go home from the hospital if you are comfortable changing an NG tube… you suit up real fast. i’m going to level with you. it’s not fun. it’s horrible actually but it also lasts 20 seconds and you just do it. for 7 months otto had an NG tube because we didn’t know if he was going to need surgery again and they didn’t want to put in a G tube if he was going to be having surgery again. i always wonder if we could have had the g tube sooner if we would have had as bad as oral aversions. A lot of his sensory issues with his face came from the NG tube we think. but there is that hind sight again. we’ll never know. but just as i got used to the NG tube, i learned how to change a G tube. and while a G tube is a bit more icky i’ll take that 10 times over and over again to changing a NG tube. The G tube he doesn’t even realize i’m changing. it’s gross but it is like putting in an earring. bodies are weird and oddly adaptable and so is your brain so if you are put in this situation you can do this. just tell yourself it’s a quick 20 seconds.
- no kid is the same, no feeding issue is the same. you’ll drown yourself with all the info and advice for therapies out there. i did. but the simplest advice i can give to add to that pile is to just trust your gut. it’s discouraging at times when you see other kids moving forward and you stuck in a plateau but one day you’ll be that person sailing forward. but your child’s feeding issue is completely different from every other one out there. it’s a puzzle and therapy is about finding the piece that fits for you and your kid.
there are no right or wrong answers in this game. no matter how much i wished for that manual. but i hope this provides some insight and encouragement if you are going through or are about to embark on this journey. or maybe if you have been through it… share some of your advice. we’re all in this together.