tuesday-night

our sweet girl has made it through surgery. oh it was a long 2 hours. we sat there waiting and waiting. i started feeling sick. i felt jittery and very nervous. i just wanted to see her and make sure she was okay. this morning i kept crying that my baby wouldnt have this perfect flawless belly anymore. its amazing to me that after i saw her for the first time and although her belly is all wrapped up with band aides and had a button coming out of it, i still saw it as perfection.

** just a side note, the gtube is a feeding tube that goes directly into her belly. we have been told makenzie will probably never be able to get all the nutrition she needs from a bottle (if she can ever have one again) so we can give her all the nutrition she needs through it. **

after we left i then started crying when ryan and i walked in the cafeteria and i saw a dad holding his baby and feeding him with a bottle. i kept telling ryan, i wish i could just feed by baby. it so strange how the smallest things you take for granted, you can long for so much. i was thinking how i missed holding her on my shoulder, i miss kissing her lips, i miss blowing on her checks... im so grateful that i still have her and that i can still do other things with her that honestly get me through. i touch her face a lot, im kissing her all the time on her head, im trying to be extra dumb so she will laugh (i dont even care who is watching now, i just want her to be happy and comforted) i hold my face close to hers most of the day, i dream about the time i can hold her at night. tonight i cant hold her. they dont want to move her around because of her surgery. im going to miss that tonight. i hope i will be able to sleep, that usually ends my day and helps me relax. ryan and i are trying to figure out what we are going to do long term. if makenzie for sure has sma she is considered disabled, therefore needing constant care.

my mind is racing all day long. one minute i am feeling confident that im fine with what going on and we will get through it. the next minute im mad, confused, scared, frustrated. i feel im still in the phase of denial. i dont really know its real yet. i have literally lived at the hospital for over a week now. i left once to get into the real world and get my h1n1 shot that was ordered by her doctor. i was gone 45 min.

she is sleeping now- i keep looking over at her and just thinking about our day. what a big day my 4 month old had. she sure is a strong girl. im amazed with how special she is. no matter what, nothing is bringing her down. her eyes are bright and happy. she smiles and she thinks her mom is a dork... i am...

** here is Makenzie before she went into surgery. all she wants to do is suck on her fingers. because of all those tubes she cant really do that :( she is still so sweet **



Here is Kenzie after surgery, still a little out of it but waking up to see mom and dad. you can see her gtube.