tuesday

thanks to my angel tara- i don't have to leave my baby's side to blog. thanks for the computer, ill take good care of it and return it soon :)
oh this has been a crazy ride everyday. we learn something new and cry a little more. i keep telling ryan our dreams are just changing and thats okay. im not thinking about makenzie learning to walk or talk, im thinking about makenzie smiling at me today. i cant express how happy i get when i see her kick her legs. she never used to do that.

before we came into the hospital she was severely malnourished. more than i thought. i was doing all i could to get her to eat anything. the calls to the doctors kept telling me she was still not feeling well from surgery. until tuesday. i couldnt take it anymore and she was a shade of blue. when the doctor hooked her up to the oxygen machine- her levels were in the 70's. they should be above 80. they rushed her to primary's in an ambulance. after getting here we were admitted to the 3rd floor. test were being done daily. she was rarely in her room because we were going from one thing to another. i got to hold her then though. i stayed with her every second of everyday. she was uncomfortable and in pain. she was arching her back so far the back of her head was touching her back. they kept turning up her oxygen. no one knew what was going on. they kept telling me she was their question baby. i saw more doctors in 3 days than i have my whole life x10. on thursday a neurologist came in and saw makenzie for the first time. she didnt even leave the room to talk to the doctors- she started demanding them to admit makenzie to the picu. she kept saying doctor lingo but i would catch things like, she is going to crash any minute, she will just stop breathing, she will give up. in that moment i was alone and i froze. my heart few out of my body. i couldnt believe this was happening. as fast as they said everything to me they unhooked my baby from the wall, put all her support in her crib and took her down to picu. ryan was already almost at the hospital so after i called him in a panic to hurry he parked the car on a curb and ran up there. as we went into the picu we were greeted by a team of 6 doctors. they all rambled off the same story i have told about a million times now as to whats been going on with makenzie. ryan and i were each talked to as well. they asked us to leave so they could intubation her (put a breathing tube down her throat) i was so scared i didnt know what to do. after being in the picu for a day and many test, including an mri to see if she had a tumor or mass on her brain which came back normal, we were given the news.
the best doc in the country if not the world for sma was our doctor. she sat ryan and i down and told us what she was pretty certain makenzie had. as she told me what my daughters life would probably be like i crumbed. she crumbled with me. she hugged me while i cried. after she left ryan and i sat there without talking. i felt i was in a dream. life was not suppose to happen like this. our baby was perfect and she would grow up to be homecoming queen. all the sudden we we didnt know if she would live past 2.
over the next day or so life was fuzzy. we cried and cried. i broke down many times telling ryan i cant do this. i didnt know what to do or say. we were overwhelmed by the support of our family and friends. we started getting more information on sma and the different types and realized this is what life is all about. change. a new day. a new challenge. i have heard from more than one amazing parent that has their child here in the picu as well that we are given our children for a reason. makenzie is meant to be with ryan and i. if makenzie was 'normal' i would be happy but if i couldnt have makenzie 'normal' but another baby 'normal' i wouldnt take it for a second. i couldnt imagine not having my daughter. she is so amazing. im trying to realize these things are suppose to happen and we are meant to go through this. we dont know what our future looks like or if we will have a future with our baby but we know we have this moment now. i hate to say that. i hate to not know if there will be a future but i guess everyone can say that.
makenzie's vocal cords are paralyzed. they are not sure why that is. they dont know if they will heal. i hate that. i want sooo badly to just hear her voice, to hear her cry. i am just praying that i can have that again. that is my dream right now. she is so beautiful. her eyes are so bright all the time, she smiles at me all the time. she even had the energy to fart in my face the first time they let me change her diaper :)
today is a scary day for me. she will be going into surgery at 2 to get her g tube placed in her belly. she needs to get better nutrition. she is still very small. the surgery takes 2 hours. im so scared. i cried in the shower this morning. i just hate the fact that my 4 month old will already have had 2 surgery's. within the next few days they will try to get her off the ventilator. its not a good thing for them to keep that in for long. when they take it out, if she can breath on her own and her vocal cords stay open she can live with a bipap. if her vocal cords close, she will need a tracheotomy. life is going to be different from here on out but as long as i have my ryan and makenzie i dont care what happens my dreams have come true.