i think i am safe to say that i am nearing the end of my flu journey. hopefully it’s the only flu journey of 2018. i managed to make it until mid february so i’d say we’ve had a decent run? i honestly can’t tell you the last time i haven’t left my home in five days. on any other given day that would be glorious. i would binge watch fixer upper like it’s my job. however this entire week i’ll admit i’ve been a bit crippled with fear on spreading it to joe and otto. mostly otto. joe is tough. for a guy who gets sick. we are all too familiar with the man cold right?
this week i am glad it’s friday. i feel like today we can close this chapter of the book of this crap week and start over. i’m not going to kid you i have a lot of anxiety. i’m learning this g tube thing for otto and it’s really intimidating to me at first. i know i’ll get the hang of it. i already love it SO much better than the NG.
just a little background for people who are not familiar.
Otto wasn’t able to eat very well at birth because of his heart. it just made him so tired and he was breathing so heavy that he couldn’t really swallow. this led to a ton of fatigue and aversion issues because he would puke a lot. he had an NG tube which went in through his nose, down his throat and into his stomach. this is the non surgical way to get him fed. by the time his surgery came he was not eating on his own at all. he spent almost three weeks in the hospital also not eating so he went essentially the first three months of his life not eating on his own. after the hospital we dealt with a lot of aversion still and he just didn’t know how to suck on a bottle. we’ve been through a lot of therapies and we are making progress but it was time for the next step in getting otto fed. the g tube is a tiny little port in his stomach to the side of his belly button that goes directly to his stomach. instead of hooking up the tube to his face now it goes right to his stomach. the best way to describe it is it looks like where you would blow up a pool toy. i’ll show you sometime when it’s not fresh out of surgery.
as grateful as i am for this advancement ( i think we are going to make a lot of progress with otto now that the tube is off his face) i can’t help but constantly fight back feelings of anger and bitterness. i try really really really hard to accept where we are in life and make the best of it but damn it. you know? just ah damn it i want my child to just be able to eat and live and get sick like any other child.
it’s moments like this where i am vulnerable and able to sink into the pit of despair. i imagine it to be quite muddy and without a way to crawl out without sinking further. i think there is a reason getting angry is sooooo much easier than getting calm. when i remain calm i’m able to see the whole picture. otto is not going to be on a feeding tube forever. we can do this. thank God for the tube, he is gaining weight. in fact he’s almost to the 18lbs they preferred for surgery. (17.4 at his surgical check in) in my heart of hearts everything is going to be ok. but man when i’m angry it’s sure easy to see the negative side of everything.
what has helped me most in these moments of anxiety and angry is quiet. a hot cup of anything. and prayer. just asking God to do his will and give me strength to carry it out. So much easier said than done because I have a lot of will of my own just ask my parents. but my will is not meant for right now. my will needs to be channeled into following God’s will for Otto and executing the best possible way I can. right now that’s getting him bigger, giving him a happy life, keeping him as healthy as possible and just love love loving him. so for now, i’m going to hook him up to the pump, pour myself another cup of tea and honey to bust up this congestion, take a hot shower and dream dream of spring.