45 days in the NICU and to be honest I don't recall much because I was such a zombie from lack of sleep and numb to the reality of Kingston's birth and what the rest of our lives and Kingston's life holds. Now I say that, because every doctor and specialist that met with Kingston told us that he probably wouldn't ever situp, walk, talk, hear, see and pretty much be a vegtable.
December 10 we took Kingston home. All of his supplies were waiting and the house and we got a quick 20min "review" on how to feed him, use his machines and what we needed to do if his MIC key ( g-tube which goes directly into his stomach )were to come out. COME ON, I am not a nurse. I was so scared. After everything the doctors and the nurses told us to prepare for and after reading the statistics of CHARGE sydrome dying before the age of 3 from asphixiaition was frightening. I haven't had a full nights sleep since. Day after day passed....sometimes they all blended toegethe because I didn't leave the house for weeks at a time. Everytime Kingston would breathe weird I would jump, I had my 2 yr old at home with me too and Wil had to work 2 jobs to even survive paying our bills.
Many nights passed where Kingston would scream and scream and since he was completely deaf and blind, there wasnt anything that we could to calm him. Finally, Wil thought of putting the stereo next to his crib and BLASTING rap music. And thank the Lord, the bumping bass would put him to sleep. We still couldnt sleep cause the music was so loud, but Kingston was able to calm down and that was enough for us.
Weeks passed, and more surgeries were performed. One day, my mom brought over a cd of the Mormon Tabernacle Choir, and of course I rolled my eyes because it was 100% obvious that Kingston could not hear. One of the best days of my life. My mom turned on "Angel Passing Through The Room" by Sissel, and Kingston turned his head and smiled. He's been hearing music ever since. I posted the video of Kingston responding to music or any sound at the for the very first time!!