Thursday, December 31, 2009

our christmas

1:30 am - still cant sleep so i figured i blog...
our real christmas was actually Dec. 12th this year. we wanted our kenzie rye to have a first christmas so we gave her one. it was really simple and not much other than ryan, j and i sitting around listening to christmas songs, looking at our lite up christmas tree in the dark and holding our beautiful little girl.
here is our tree
my awesome sister made these- i (heart) them

the sweetest boy ever made these. Q i love you. thank you for the angels.
i tried to dress this women for the occasion but she wasn't having it. i guess i don't blame her.
we all had a great time. even our extremely tired little girl who pooped out early in the night.
ryan and i thought long and hard what to get makenzie. it had to be something extra special so she could always have it. we wrote her a letter and we gave her a locket. we put our picture in it and wanted her to take it with her when she goes. that way she will always know we are with her as much as she is with us. we need her just like she needed us and we love her more than she could ever imagine.




**this last picture is for the simple reason we are mean parents! like i said before, what fun are kids if you cant laugh at them from time to time :)



we sent this little neckless to heaven with our daughter. we hope she will carry it around and always remembers how much we treasure her. how much we adore her. how our lives will never be the same without her. i keep pulling myself away from sleeping in her crib. i don't know why i want to but i am dieing to feel her. i want to be close to her. i still hate
realizing that wont happen physically.
dec. 25th. is just the first of many upcoming firsts we will have to experience without kenzie. we hope she follows us and we can show her a good time though.
after our christmas night o' fun j thought she was funny and made kenzie look like a fool-

well the cutest fool i have ever seen!
oh how i miss this little girl. you sleep tight muffin. maybe stop by for a quick visit if you can. i could sure use a hug- im still aching all over for you.

Wednesday, December 30, 2009

a few first

thanks AL for taking me grocery shopping for the first time since makenzie was admitted to the hospital. it was actually a lot of fun and i didn't fall over in the store totally depressed i couldn't buy a box of diapers. thanks A(+fam), J and ry for the awesome, spur of the moment sledding fun in your back yard this evening.

I think kenzie was there and she loved every minute of it... Esp watching us face plant it! She only laughed when Ryan or I would hurt ourselves... This girl is seriously hilarious.

oh kendra, you're losing it

so i was watching tv this morning, it was some dumb show i really wasn't paying much attention to it while trying to fold our clothes (by the way- 1 month + little to no laundry being done = hours and hours of fun for me) anyway.... i happen to catch the lady talk about taking her daughter to get her 4 month shots.... what the....
i don't know what came over me but i started freaking out because makenzie never got her 4 month shots. she was scheduled to get them done the week after she was checked into the hospital so she never made it to the appointment. they told me she would get them when she was checked out of the hospital.
i got so flustered, tried to call ryan- realized he forgot his phone today... started to call her pediatrician. then my brain kicked in. HELLO!
really really, i don't think her Rotavirus, Polio (IPV) or DTaP shots are really needed now.
ohhh kendra- you're seriously losing it.

Tuesday, December 29, 2009

isnt she amazing

she smiles through it all.
what a miracle.
she is my greatest joy.
everyone of my dreams were answered with her.

Ill stand back up.

Go ahead and take your best shot,
Let 'er rip, give it all you've got,
I'm laid out on the floor, but I've been here before,
I may stumble, yeah i might fall,
Only human aren't we all?
I might lose my way, but hear me when i say,

I will stand back up,
You'll know just the moment when I've have enough,
Sometimes I'm afraid, and i don't feel that tough,
But ill stand back up,

Ive been beaten up and bruised,
Ive been kicked right off my shoes,
Been down on my knees more times than you'd believe,
when the darkness tires to get me,
there a light that just wont let me,
It might take my pride, and my tears may fill my eyes,
But ill stand back up,

Ive weathered all these storms,
But i just turn them into wind, so I can fly,
What don't kill you makes you stronger,
When i take my last breath,
That's when ill just give up,

So, go ahead to take your best shot,
Let 'er rip, give it all you've got,
You might win this round but you cant keep me down,

'Cause ill stand back up,
And you'll know just the moment when I've had enough,
Sometimes I'm afraid and i don't feel that tough,
But ill stand back up,

You'll know just the moment when I've had enough,
Sometimes I'm afraid and i don't feel that tough,
But ill stand back up.

*sugarland - ill stand back up
song is on my playlist

Thanks for the song Amie...

I keep wishing i was stronger like Makenzie. I guess the first step to doing that is to keep getting up. To keep going. Although everything inside me fights it, i have to do it. I have to make my daughter proud. She has made a difference in this world, in peoples lives and so should i. I need to stay close to my husband- my best friend, the one person who knows what I'm going through. He is amazing. We are making plans- trying to find ways to help others in honor of our beautiful daughter. She brought so much light to this world, i want to keep that light going.

Sunday, December 27, 2009

dumb breast milk

we went out to a movie with a&d last night. we love them. it was a great night but on our way home ry and i both agreed it felt like we were missing something. we both kept thinking we forgot something or we weren't being responsible. it was a strange feeling. a&d are amazing, thanks for being there.

when we got home i was feeling good, i didn't want that feeling to end so i had to stay busy. i couldn't think. i started to clean. my house is gross. after being gone for a month then coming back and having no energy or desire to clean it- wow... it got bad. it would have been worse if my amaZing sista A wouldn't have come to clean it a few times. anyway--- i started cleaning out the fridge, moved up to the freezer... in the very back i found those dumb bags of what used to be like gold... breast milk... all you women who breastfed/pumped know what i mean. those things are very special and should be kept forever! okay maybe not for forever but its like you just cant throw that precious stuff away. well i was pissed. it brought me back to the end of sept.
makenzie was doing great breastfeeding from the beginning. she never ate a lot but she ate well. pumping was great for me because it kept the milk coming and it kept my freezer stocked. (if you don't remember i kept having nightmares before kenzie was born that i would forget to feed her so i became crazy pumping lady in order to always have enough on hand so she would never go hungry) anyway--- when kenzie was turning 2 months it seemed that over night she couldn't nurse anymore. i didn't know what the problem was. she would drink fine from a bottle but couldn't get anything out of me. i felt like a failure of a mom. i was always told YOU BREASTFEED... no matter what, you're a bad person if you don't. whatever! i really felt guilty but i really just wanted my baby to eat. i would try everything she wouldn't nurse. i had to just pump- all the time... that didn't last long. she didn't like my milk in a bottle. this girl was picky! i gave her formula.. she ate. whatever i didn't care as long as she ate. my milk dried up but it didn't matter, i just wanted her to eat.
fast forward to the hospital around the time they were trying to diagnose her---
i kept getting asked the question why i stopped nursing. i told my same story a million times. she just stopped. i didn't know why. they would ask if she was picky about her bottles. YES. she was... i had to get her certain bottles that she could get formula out easy but not easy enough that it was drowning her. after the diagnosis came back that she did have a neuromuscular disease they told me that a big first sign of it was that she couldn't nurse anymore. she lost the strength. her bottles didn't make her try hard.
fast forward to last night when i found my bags of gold---
i felt sick. i was so proud of myself when i got the hang of feeding her. i felt powerful as a mom to be able to provide for her like that. i kept thinking about watching her while she ate.
i threw them all away.

i had a horrible night. cried pretty much all night. ryan tried to help but i couldn't stop. at one point i passed out from exhaustion but continued to cry. when it came time to wake up this morning i didn't even think, i went in her room. i stood there for a while. touched her things. opened her drawers. i found my way to the corner where her dirty clothes were. i collapsed in that tiny area. i sat there. smelling her shirt that she wore the night before she went to the hospital. she threw up on it a little. she slobbered on it. i held it so close and wanted to just have this all stop. right now, i hate God. i hate him for taking my daughter. i don't remember her smell because the last month of her life she smelled like all that crap in the hospital. she smelled like the tape on her face, she smelled like the weird formula they gave her. I'm so angry. i have ever been so angry. i said some things last night. ryan understood and agreed with me but i don't know if we really feel like that or we were just so unbelievably sad. i really don't want to keep moving. i don't want to think life will get easier. i just want makenzie. i feel so sick all the time.

throughout the day today i was having ok moments but pretty much all day i was not even close to being okay. i know ryan wishes he could help more and its not like him to just sit around and hold me while i cry, he wants to help me, he wants to change things. he gets frustrated when he cant. i hope I'm not pushing him away. i screamed today. most of the day. there were a few times i didn't even feel like myself. i felt like something was taking over me. i kept crying. ryan had to give me some tough love. i hate tough love. i kept yelling that God would bring kenzie back if i just kept praying. he kept telling me that she isn't coming back, God isn't bringing her back. for a bit- i hated him for saying that. i didn't want to hear it. i still don't. finally i just pushed her out of my mind. he asked if i wanted to go on a walk or drive. i couldn't move. i was able to get myself in a position that no pictures were in my view, i was able to get my mind onto something not her. i was able to breathe. ryan sat there until i feel asleep. i slept for a few hours. before i fully woke up- i had this dream. it was a dream or a wish or my mind making something up i really don't know. but it was kenzie. she was older though. she had fair skin, long dark hair, she was thin, she was beautiful. i couldn't see her face but i knew it was kenzie. i was starting to wake up so i made myself fall back to sleep because i didn't want to lose that image of her. i hope that was her.

ryan wants me to get some help... i got annoyed because i think- hello, my baby died. what else should i be doing? maybe he is right. the last few days I'm not feeling better, I'm feeling worse. i get into this mode where i feel so out of control. i sometimes scare myself. like today.
i don't even know what to do or where to start. i have been in and out of counseling my whole life. i have always been messed up that way. i have been on and off different meds my whole life. i just don't know how i should be feeling now. people keep saying this is all normal so i don't know what is normal and whats crossing over being normal and when i should get help.
this blog helps more than anything. it get everything sorted out. sometimes ill go back and read what i have written in the past. so far i cant read about when kenzie was still here. it makes me made at myself. i think why the hell did i blog- i should have been holding or watching or playing with makenzie.

everyone has different views of heaven. I'm not sure what i believe. i read what i wrote before about heaven over and over and i wonder if that's true. i hope it is. i hope makenzie is happy. i hope she is pain free. i worry so much about her missing ryan and i. i hope she isn't scared. i hope she is being held, loved and kissed.
i miss her so much. i wish we could have grown old together.

Saturday, December 26, 2009

makenzie rye

we are slowly getting the pictures back of kenzie that we had done before she passed. this sweet lady is sending me a few as a preview as she gets them edited. i cant wait until i have them all.





i cant believe how much i miss her. i cant believe how much i love her. im aching for those eyes.

Friday, December 25, 2009

fallen

the day is done... we kept busy which kept my mind on things other than makenzie. our family was amazing, they showered us with so much love today. thank you everyone! we are home, ryan has gone to bed. we argued a bit tonight. i hate when we do that. tonight was the first night since makenzie was gone that when we fought i just wanted to be alone for a minute. when we used to have arguments i would take kenzie into her room and we would read. we would read until i realized how dumb we were being and ryan and i made up. tonight it hit me so hard. she isn't coming back. i don't have that little peace maker here with me. ahhh i miss her.
i missed her having her first Christmas, i miss her opening presents - playing in the wrapping paper, i miss her in my arms, i miss dreaming of her future with us. i miss her so much. my body hurts today. i hurt so much right now. i am having such a hard time just writing these words- my tears just keep coming so fast i cant even read what I'm writing. i want to run and scream. i have to keep taking a break to get a good cry out then i write another sentence. i have to just let it out right now, i cant always be rational and turn what is going on around me to be positive.

i want my baby. i want to hold her. this pain is so real, it hurts so bad. i am scared. i want to run. i need her and i cant even think about her not being here. i tell myself its not real but when i realize it is, i cry. its a horrible cry. it hurts. my eyes burn. i get this massive headache. i squeeze whatever is near- usually a pillow or her blanket. i hate that i cant hold her. i hate that everyday is one more day i haven't had her with me. i want to say the worst things to God for taking her away from me. i wish so much no one ever has to lose a child and i wish soo soo much that i didn't have to lose mine. i want her hands, feet, arms, elbows, neck, ears- every inch of her body back. my family has been great to get me out of bed and help me do something everyday but i honestly wish i could lay in bed and cry. i wish i could dream and dream of her. usually i don't dream of her when I'm sleeping, i hate that i cant control that. i dream of her when I'm awake. i dream of what we would be doing now. on Christmas eve night, i would have been jumping around all night begging ryan to let us get up so makenzie could open her presents. i wouldn't have let ryan or myself by each other gifts so that we could buy her more. i would have bought her a barbie. just because i was so excited to get her one. i already bought a Christmas book for her, some clothes, Christmas pj's and a toy. i wish i could watch her hold them. look at them. smile at them. i cant believe how bad i hurt. I'm angry. I'm so angry i couldn't raise makenzie. i sometimes ask God if he took her because i didn't love her enough, was i not going to be a good mom to her, did i do something in my past that he is punishing me for? i don't understand.
she is so amazing. i miss her eyes so much. i miss her nose. i miss kissing her lips.
i hate death. i hate that i had to bury my daughter. i hate that i will spend the rest of my life dreaming about her instead of holding her.

GOD- i promise i would have loved her every second of her life. i would have gone to the moon and back to protect her. i wouldn't have let anything happen to her. i would have kissed her everyday. i promise i would have given up everything to give her anything. those few months with her were amazing, i cant put into words how lucky we were to have them but i wish so much i could have more time. i wish she wouldn't have been sick. i wish she wouldn't have been in pain. i wish she wouldn't have had to struggle. i wish she wouldn't have had to grow up so fast.
God i promise i would have thanked you everyday for her. i wish so much i could wake up. i just want to go in her room and get her out of bed. i want to hold her and kiss her and just rock her. i want to feel her.

i feel like i cant breathe.

kenzie... oh baby i miss you. i miss you with every inch of my body. i pretend I'm holding you sometimes. i pretend I'm kissing you. i pretend I'm going to get you out of bed but i cant even go into your room. i worry about you. i worry your having a hard time without me. i was the only one who could always calm you down. i hope you don't get scared. i hope your not hurting. i hope you know how much i love you muffin. did you know i used to watch you sleep? did you know i used to look at you and was amazed everytime knowing you were mine? i didn't take you for granted. i never will. i wish i could have taught you more. i wish i could have helped you more. i wish i could have taken all your pain away. i hurt so much. its been 1 week and 1 day since i last saw your body, since i last felt your weight in my arms, since i last kissed your lips. oh makenzie i miss you. you are my everything. you changed my life more than you could ever understand. if you were here i would hold you, i would stay up all night and just look at you. i would stroke your face. i would play with your hair. i would kiss every inch of your body.
on dec. 13th after they took those tubes out of your mouth makenzie- i held you so tight. i held you over my shoulder, our favorite way. you just molded your body into mine. your arms were around me. you had grown so much. i wasn't able to hold you like that in a month. your legs dangled past my hips. your head snuggled under my chin. i didn't want to let you go. you kept getting colder. i wrapped you in a blanket, it helped a little. those last few moments of your life was the worst yet most peaceful feeling i have ever experienced in my life. i know you had some people in that room coming to take you from me but i didn't want to let you go. i kept thinking during the day, some miracle will happen and when they take that tube out she will breath on her own. i wish you would have. i wish it wasn't your time. i wish you were still here with me and your daddy. he got your hand prints today for Christmas, he cried. i cried. we miss you.
we went to see your grave today. the flowers have all died. we need to bring you new ones. did you get the balloons we sent you? we will keep sending them everyday for a while.
please come to see us tonight kenzie. i need to hold you. i need you to hold me. please be happy for mom and be loving life now. please be jumping on clouds, singing silly songs, swimming, sucking on suckers, blowing bubbles and spinning in circles.
**tonight's dream- at the beach. we need a get a way. we will play in the sand. build sand castles then jump into the waves. see you there.
i love you.
goodnight.

Thursday, December 24, 2009

Merry Christmas

kenzie is still reminding me a thing or two.

just as i published that last post i sat back and realized its still Christmas eve. its Christmas eve for our family, friends and everyone of you out there. its Christmas eve for makenzie. even though she isn't physically here with me i have to remember she is having a much better Christmas than i could ever give her. she is with God. she is seeing every twinkling light in the world. she is singing, caroling, playing and laughing. even though she isn't with me, she is in such a better place. I guess that's all i could ask for Christmas.

11 days - christmas eve

are you ready for Christmas? i am but to be honest I'm glad its almost over. since last year i have dreamed about Christmas morning with makenzie. i even got a head start on shopping this year and got her a few things before she went into the hospital. even though she never saw those things, i cant imagine getting rid of them. i bought them for her, thinking about opening them with her and one day watching her play with them. i don't understand why whenever i go shopping I'm drawn to the baby area. what the crap..... i do everything i can to go around that area but when i least expect it, I'm standing in front of the diapers, clothes, toys, strollers or whatever baby item that store Carry's. then i have a hard time leaving. i just hold the bibs, the binkys, the blocks. this is annoying. i haven't grocery shopped in months. since before kenzie went into the hospital. i make a point to not go into a place that i have to look at thing i know will remind me of makenzie, but it doesn't matter where i go, she shows up everywhere.
its been 11 days since my daughter died. it doesn't feel like Christmas eve.

Tuesday, December 22, 2009

keep moving

i am learning something new everyday- today is no exception.
I'm realizing life is never going to be the same. i will always love makenzie with all my heart and think about her everyday, that will never change.
she will never come back, that will never change. i WILL, however see her again. my daughter is in heaven, she is waiting for me and for her daddy. she is watching over us and will keep us moving.
i have been having a really hard time the last few days worrying if i made the right choice with everything we have done with makenzie. should we have pushed harder for certain tests or pushed harder for them to not do this or that. could things have been different? my emotions get in the way and make me think i should have done more, maybe i should have held on longer and makenzie could have been a miracle or some how, some way she would be healed. i have a hard time looking at her pictures and seeing my perfect daughter- knowing all along she had this disease and i didn't know. when i really sit down and sort out my feelings, which is something i really had to do today, i remind myself that i did do everything i was suppose to. a great person told me while makenzie was in the hospital after we found out she had this disease and trying to figure out what to do,
'You're not making this decision, makenzie has already made it.' she was still alive this last month because she was on life support, a machine was breathing for her.
she choose ryan and i to be her parents, she knew before she came here that she would only be here for a short amount of time. she was so special that she only needed a few months to do everything that she needed to do here in this world. how special is she and how special is our family to have this beautiful little angel come into our life.
although all of this knowledge gives me peace, i am still missing makenzie beyond words. i will always miss her, i will always want her in my arms. that wont go away. i will keep talking to her and i will keep asking her to come hold me. maybe there will come a time i wont need her quite as much as i do now, which is all day and all night. there will come a time when i wont physically ache. there will come a time when everything, including a billboard, wont make me cry because i miss kenzie. there will come a time when i can go into her room and hold her things. there will come a time when i will be able to sleep in my bed again. for right now, we are just moving one minute at a time.

Monday, December 21, 2009

... write it out

I'm mad but instead of venting through this dumb post again I'm going to write it out in a different way. i don't think kenzie knew the feeling of being mad. the worst could be going on in her little world and she would brave it out. she would keep going. i hate that i cant be more like her but I'm trying. this post will be random and probably not make any sense but i just want to write about her. maybe i can sort out my feelings as i go on.

she had a little bit of a lazy eye like her dad. you can only see it in certain pictures or at certain times. it was no secret that she loved her hands- she would try so hard to get her whole fist in her mouth. she gagged herself only a few times with her fingers. she loved when i would tuck her in her carseat or her bed with her pokadot blanket- i would tuck it under both sides of her face. she would snuggle up to it. she didn't mind bows but hated hats. she hated getting her clothes changed. she didn't really care for being naked. her skin was so sensitive and anytime you would even touch her skin it would leave a red mark. she loved being on her left side more than her right, unless the tv was on the right then she liked being on that side. her eyes would get red when she was sleepy or upset. she had this red oval on her right eye lid that got very red when she cried. she was learning to rub her eyes when she was really sleepy. she started to like sucking my finger because the binky didn't really fit in that great around her breathing tube. she would suck so hard, my finger instantly turned into a prune when she sucked on it. her finger nails grew really fast but her toe nails grew really really slow. the one time i painted her finger nails she sucked most of the paint off so i never did that again. although i have over 10 pairs of shoes for kenzie she never fit into one of them. we got a mold of kenzie's foot when she was 3 weeks and another a week before she passed and they are pretty much the same size, just one of them is a little longer. she would smile every time her dad came home from work, not so much for her mom. in the hospital i let kenzie try chocolate, a pickle and a sucker. she hated them all. she liked her touch and feel books. she loved books with bright colors. she listened to music before she went to bed every night. usually she would get through - butterfly kisses, return to pooh corner, some piano song then it wont be like this for long, then she was asleep. she loved the baby bjorn but not as much as i did. she hated her car seat- when it was time to go in the morning i would carry her around while i did everything, i even trained the dog to get her own treat so i didn't have to bend over with everything in my arms. i would even open the door before i would put her in her carseat. as soon as she was in i would run to the car and take off. once we got on the freeway she was fine. we dreamed together every night. her fingers fit perfectly around my fingers. she fit perfectly into my arms. her head fit perfectly under my chin.

i miss my baby. although I'm crying now, this was better than therapy. its amazing how fast your life, thoughts and feelings can change when you go through a life changing event. things that normally wouldn't bother me, drive me nuts now and things that normally would bother me, don't seem so important anymore. i don't know whats going on. i think the single most annoying, aggravating thing is how people take life for granted. i don't understand why certain things are important or i don't understand how you can treat someone else like they are dirt. i hate hate hate thinking about someone hurting another. whether its something as big as physically hurting someone or something as simple as giving them a dirty look in the store. wondering around trying to find something to get my husband for christmas, no one knows i just lost my daughter and that I'm carrying her blanket in my purse and I'm ready to fall over any second because i want her back so badly. i just think if I'm walking around feeling like that- how many other people are walking around going through similar or even worse problems. it just makes me think how we all need to do our part to make this world a little better. if someone seems upset and you don't know them, maybe you can just smile at them or even talk to them. if you see someone wondering around looking crazy or weird, its probably me, or someone who could be going through a horrible thing in their life and they are just trying to keep moving. if it wasn't for my amazing family and friends getting me out of bed every morning, keeping me busy during the day, letting me lean on them, giving me something to smile about, hugging me or any of the other millions of things they do for me, i would be curled up on the floor wishing i was dead or if i was to ever got out of the house i would probably go crazy and hurt someone. i wish everyone out there would take a second when you see someone you usually judge and stop and realize you have no idea what they could be going through, never ever say you would do this or you would do that in their situation because you have no freaking clue what you would really do. you are not in that situation and you couldn't imagine what could really happen if you were. no one out there has a perfect life, we are all going through hard times now and again which should give you even more reason to be nice to someone else. this holiday season is pretty much here, i have been a little behind and just getting around to doing the things i really want for other people but I'm making myself and my daughter a promise to be more like her this year. she smiled at everyone. she didn't care what color you were, if you smelled funny or not, if you just pricked her with a needle or anything. she loved everyone. we all need to be more like her. we need to give more. no matter how bad we have it, someone somewhere in this world is going through something worse than us. as much as i hurt right now, i know my situation could be worse.

tonight, I'm going to bed praying that makenzie holds me again. i hope she will join me in my dreams but i also hope she helps someone else out there that needs a little angel tonight, she is good at bring happiness and peace.






Sunday, December 20, 2009

weekend

we spent this weekend just the 2 of us. we got away for a night and tried to get our minds off everything going on around us. of course it didn't work. we had a great time being together and stayed at an awesome place but our minds kept going back to the same thing.
i think what gets so hard is the smallest thing will bring up thoughts, feelings and memories. as i went to pay for our room, i got in my purse saw the barnes and nobel gift card that i got from my credit card rewards and remembered i got that gift card to buy makenzie books for christmas. i remember trying to pick what gift card i wanted and couldn't think of a better one than that one. i had a few books in mind that i wanted to get her and i knew she would love. i almost broke down in front of the poor receptionist but held it back until we got into the room.
we went to our church's christmas program today- it was incredible... we loved it... however this adorable little girl sat near us. she was just perfect, she looked like kenzie. she even had the same blanket makenzie has and the same binkie. i think her mom thought i was crazy because i just couldn't stop staring at her. i just imagined sitting there with my kenzie. her little hands and arms and even her mouth reminded me of makenzie. she had these beautiful eyes that made me think of makenzies eyes.
i want to know when this sharp pain will go away? or will it ever? its only been a week but at the same time its been a week. shouldn't it get a little easier? i actually feel like its harder sometimes.
we have officially ran out of clothes so i figured i better get some laundry done. i was separating our clothes and found a pair of kenzie's pjs... ahhh... her clothes are never in our laundry basket. she has her own in her room (there is a basket full in her room but i cant even go in there so they wont be washed for who knows how long) why is it that just because her dirty little clothes were in my laundry i froze. i couldn't move. ryan was calling me from downstairs and i couldn't even answer. i got a little mad because i haven't been home in a month so i didn't understand why this wasn't spotted earlier when ryan did laundry other times. why did i have to find it now? i wouldn't ever really be mad at ryan about that but it just hurt. i wanted to run downstairs and whip my poor husband in the butt for not finding every little thing like that and putting it away. i hope it doesn't last more than today but i have been really short with him. i am feeling frustrated very easy. i have been feeling frustrated with God. so many feelings today at church- one feeling at one point was anger, another was peace and warmth, another was jealousy, another was annoyed- just to name a few. i watch tv and realize i cant watch this crap because i get so emotional. i get mad when people take their kids for granted, i get annoyed when i see people loving on their kids. i don't know what i want.

this post is all over the place. so is my mind. hope it makes a little sense.

Friday, December 18, 2009

the day

today has been a better day. this morning i laid there alone on the couch thinking i was going to call allie and tell her i couldn't go out. i was going to lay there and cry all day. i didn't want to move. a little knock came to my back door. i laid still thinking they would go away. i thought it was my sweet neighbors or something but i didn't want them to see me in my pjs. they kept knocking. i finally got up and saw it was my sister alana and her baby lucy. i have to say she was the first person to save me today, she got me up and made me smile. she helped me feel better. the second person to help save me today- my allie. she took me shopping (really helps you feel better sometimes) since christmas is a week from today i figured i better get some stuff for my family, esp ryan. the third person who saved me - my kate and omar who cooked an amazing meal and my greg and his daughter jessica who brought it to us. thank you all for giving me this day. it was a day i still thought about makenzie every other second but i didn't feel sorry for me.

since i have felt a little better today i figure this is a perfect time to start talking about some of the things that happened over the last few days and i thought i would start with the day kenzie passed and how we made that decision.

the day kenzie passed away we were planning on letting them take the tube out around 7 pm and holding her as she peacefully passed in our arms. we asked our parents to come and be with us but not to come earlier than 5 pm. we spent our last day loving our little girl. we traded off holding her all day. we kissed her, held her hands, hugged her, felt her weight in our arms and gave her a bath. the last few days were really getting hard for her. she was so tired, weak and uncomfortable. i could see in her eyes everyday she was ready to be free. i would get up every morning, talk to her, and try to feel when she was ready to go. we wanted certain nurses and doctors to help us when she was to go because we trusted them to make her comfortable and not let her suffer. to do that we kind of needed to plan a day. i said sunday night but with the understanding if i woke up and didn't feel right we wouldn't do it. i heard a few times 'you know you don't have to do it now' but what everyone needed to understand is this decision wasn't made with ryan and i in mind. if it was made based only on makenzie. to wait and do it another day or after the holidays meant we were keeping makenzie in this body and keeping her on those machines and keeping her uncomfortable and for what- us? as her parents we felt it was our obligation to her that we needed to let her go when she is ready and not keep her here for us. we were lucky enough to talk to many incredible families about their sweet children who have similar problems as kenzie. we heard about their feelings and their struggles. although it was the right choice for them to do it one way we knew we had to do what we felt was right for makenzie. we thought long and hard about what we were going to do and when it all came down it it, we made this choice based on what we knew makenzie wanted. we talked to her and we watched her. i have said before, she will talk to you with her eyes. i knew she was telling us she was ready to be done. it took a few days for me to even admit what i knew to ryan. i couldn't say those words. i denied it. i wasn't scared of traching her, quitting my job, selling our house and doing anything we needed to take care of her. i was up for anything if it meant being with her even for one more day. ryan kept telling me he didn't really feel the same. kenzie and him had an amazing connection and he knew early on what she wanted. when i finally talked to ryan about it and admitted to myself and to him what she had been telling me all along we started to work through it together. we never told anyone else at first. we kept it to ourselves. we prayed for comfort if this was the right decision, we thought alot about it and we continued to talk to other people about their thoughts and feelings regarding both choices.
when sunday came i kept praying i wouldn't have to make the call. there is NO way i could say "its time". i wouldn't let myself think about it. i just held kenzie. kissed her and held her hands. i told her all day how much i love her and how we will always be together in our hearts. just after 5 when her grandparents came kenzie started making a funny noise. i asked ryan to get the nurse. the nurse came in and quickly turned and ran to the door telling the doctor her tube was out. i held kenzie tighter and my heart was racing a million miles a minute. i think a few dozen nurses and doctors ran into our room. kenzie's doctor looked at ryan and i and said "are you okay? are you ready now?" it was the single worst moment of my life. i know for ryan to. we knew it was coming, we were preparing for it to happen in a couple more hours but to actually say it was okay to let her go was horrible, to know our baby was leaving us in that moment. ryan grabbed me and held both kenzie and i. i held her so close to me as they hurried and gave her a little oxygen until they could get her some medicine to calm her down a little so she didn't feel like she didn't have any air. i was holding her little hand and i felt her grip get looser and looser. we cried, talked to her and held her. we kept telling her how much we love her and how she is everything we could ever dream of. we had so many emotions and spiritual feelings in those moments that i could go into but feel they are to personal and special to ryan and i that we will keep them just between the 3 of us.
we felt our baby leave us in those few minutes. we knew angels were in her room and came to take her home to heaven. although it was the worst pain i have ever been in, i felt a small amount of peace through it all knowing my daughter wasn't in any pain anymore. kenzie's time of death was 5:25 pm ish...
after all was said and done we sat back and realized we didn't make this decision after all. she made it all along. she prepared us for what was going to happen and she ended up making the final say in the end as well. our little girl wasn't meant to be here for an average persons lifetime. she came, made this world a little better, did her job and then returned to God.
I hurt, I'm in pain everyday. I miss my baby so much and i often find myself yelling at God asking why Makenzie. Asking why she had to have any pain in the first place and why she was the one who had to go. I hope and pray this will get a little less painful. I hope I can find peace more than a few moments here and there. Its all still fresh and new so I'm not expecting it to happen within the next few days but I hope at some point I can feel more peace.
After kenzie's spirit had left we all sat in her room. we all held her, kissed her, cried on her and hugged each other. we had an amazing photographer come and take some beautiful pictures of kenz. Her last photos without tubes. She looked so amazing in them.
We stayed with her for hours. it was extremely hard to leave there. we let her balloons go outside. it was great to see them float to heaven knowing she would catch them all.

i cant decide if today was a stepping stone for me and I'm going in a good direction of find that peace or if I'm back into denial mode. it scares me. when i go back into denial mode i run into a wall when reality hits me again. it punches me in the face. its an unbelievable pain i feel. no matter what, i miss makenzie. i wish she was still in my arms. i worry about tomorrow and if i will be able to even get up. i just want to lay here until she comes back to me - whenever that is.

her pictures are everywhere in our house, i haven't decided if they help or make things worse. its her pictures that make me crumble but there is no way i could take them down. i need them. i need to see her face every second.

here are some of the amazing pictures taken after she passed. its done by this volunteer organization called 'now i lay me down to sleep' i loved our photographer. she was simply wonderful.







Thursday, December 17, 2009

funeral

i have the best family and friends in the world.
i cant believe how much support we received over the past 2 days. we feel so loved.
thank you everyone- you have no idea how much you all mean to us. im sorry if we didnt get to see and talk to you all much. im sorry if we seemed weird and not very talkative. we love each and everyone of you. everyone of you that came to the viewing and/or funeral and everyone of you that have sent your good thoughts and prayers.
i feel everything went amazing.
ill write more about what happened and how it went in more detail later. right now my heart hurts. i have felt i have been doing really good the last couple days. i got to hold my baby both days. it was amazing. i felt i was strong and held it together so i didnt cry on everyone's shoulders. after the funeral was over i still felt like i was going to be okay. we came home unpacked our pictures, her things, scrapbooks, plants, cards and flowers. i picked up my house. asked our very best friends to come over and bring us food :)
we watched a super cute movie.
it was half way through or toward the end of the movie i got a sudden rush of emotion. i dont know what happened to me but i felt like someone just punched me. i tried to hold it together until our dear friends went home. after they left i fell apart. i dont think i have ever cried so hard. it was the first time ryan cried that hard with me. we both just held each other. i think it was the first time both of us really realized our daughter is physically gone. her spirit lives but we will never be able to hold her again. our kisses will have to be blown to her. our hugs will be carried by the wind. we miss our baby. i know we are strong because we keep going and we are still breathing but tonight we didnt want to be strong. we got angry-
we wanted to hold makenzie. we wanted to see those eyes. we wanted to hear her cry.

oh kenzie, please come hold your parents tonight. we need you more than we have ever needed you before. we are still sleeping in the front room, on the floor, surrounded by your blankets. please wrap us in your arms. give us kisses. visit us in our dreams. both your daddy and i hated saying goodbye today. we still need you. i hope you know how much we love you.
*** kenzie, your dad has been extra strong for me. i know he is having a really hard time right now and will tomorrow, please help him through the day. give him lots of smiles, he misses them the most.

Tuesday, December 15, 2009

2 days

i know those of you who have lost someone you see even though your world has stopped the rest of the world keeps going. people still cut other off in traffic, they still are rude when you accidentally bump into them at the store, they still look at you like your a gross bum when you come into their fancy high end store thinking you could never buy anything in there. yeah that's still the world we all live in. today was a very up and down day. this morning was okay, ryan and i couldn't go upstairs so we slept on the couch when we finally fell asleep after 3 am. we woke up, i went to my sisters to make kenzie's picture slide show thing for the funeral. it was nice to be with her and her beautiful girls and my mom. after we got it done we watched it and cried. i miss my baby. ryan and i then had to run to the mortuary to get some last minute things figured out. they asked if i wanted to see makenzie. of course i had to say yes. I'm glad i did but it was horribly painful. i held her. i rocked her. i sobbed all over her. we donated her heart valves. i wasn't prepared to see the scar it makes. i wish i wouldn't have seen that. she looked perfect though. i rubbed her head, kissed her face, held her feet and hands and just wished i could take her home. ryan is being so strong, i wish i could be a bit stronger. I'm okay at times but crumble the next. after i finally let her go promising i would be back tomorrow we tried to find the perfect outfit to put her in. i had this idea in my head but i couldn't find it anywhere! we went all over the city. we stopped to get ryan and new suit, he looks great in it. we finally found this cute baby store on 9th and 9th. yes i walked in with my hair in disarray because i don't have the strength to wash it let alone do anything with it. i had mis-match clothes because i really don't care what i look like i just don't want to think about that. the little makeup i had on today was smeared across the side of my face because i cried it all over my daughters body just hours before. anyway after we walked past the great people who gave us dirty looks and didn't say 2 words to us we found some beautiful clothes. we found this dress and sweater that sent chills down both mine and ryans spine. it was amazing. it was nothing like i pictured what i wanted her to wear, it was so much better. we bought the crazy expensive outfit from the crazy mean people and walked out feeling a little better knowing we found something great for her. we are not home. before i came home my sisters and ryan put all of makenzie's things in her room. her pictures are all still out but her toys are put away. i cant look at them. i cant think about them. i cant even look at anyone else's blog. I'm sorry to all of you, i wish i could feel differently but right now i cant. I'm not mad or jealous it just makes me think of my daughter. it brings back the reality that she is not here. it just hurts so much right now I'm trying just to get through my days.
tomorrow is the viewing. ryan and i are going early to help dress her. i want to hold her. i want to feel her again. her spirit is gone and i know that but i still feel a little comfort holding her tiny body. i get comfort knowing i will see her again, i get comfort knowing she is free and happy in heaven but it doesn't fill that hole in my body. it doesn't take a load off my chest. i just want my baby. i want makenzie. i want that perfect life i lead a month ago.
thanks again everyone for all your love and support. it means so much to ryan and i. we love you all.

Makenzie Rye Webster 7/18/2009~12/13/2009 Makenzie Rye returned home to her Heavenly Father on Sunday night in the arms of her Dad and Mom. Our beautiful little girl was the light of our lives and touched so many hearts in her short time here on earth. Her eyes and smile would tell us stories. Kenzie was wise beyond her age and has an amazing spirit. During her short time on earth she fought a hard battle with a rare neuromuscular disease. Kenzie is survived by her adoring Daddy and Mommy, Ryan and Kendra Webster. Baby girl we are going to miss you beyond words. You will forever live in our hearts and your smile will always keep us warm. Now muffin go run, jump, laugh and breathe in freedom. Makenzie will be dearly missed by her grandparents, Randy and Becky Webster, Diane and Jesse Ritzman, along with many uncles, aunts, cousins, friends and her special puppy Harley. Makenzie is preceded in death by many awaiting angels. We want to thank, from the bottom of our hearts, the doctors, nurses, respiratory therapists and other staff at Primary Children's Medical Center for all their love, support and dedication to our beautiful little girl. Funeral Services will be Thursday December 17, 2009, 11:00a.m. at Memorial Mortuary, 5850 S. 900 E. A viewing will be Wednesday Dec. 16, 2009, 6:30-8:00p.m. at Memorial Mortuary, and half hour before services. Interment at Lake Hills Memorial. Online condolences at www.memorialutah.com

24 hours...

its 1:30 am. i cant sleep. i really cant go into our room yet. we stayed at a hotel last night. i dont even know for sure what im going to write. i have so many emotions i dont know where to start.
this morning ryan and i both layed in bed not wanting to open our eyes. we kept asking for this nightmare to be over. i feel empty. i hurt beyond physical and emotional pain. its a pain i cant explain and you could never imagine. i lost my heart last night. i am not ready to write about how it happened or what happened yet. im not even ready to write this but i have to start letting it out somewhere. im beyond tears now, i could cry every second of everyday and it wouldnt help. i miss my daughter. i miss her beyond words. i want to hold her so bad. i want to kiss her. i feel lost, scared, unsure of anything. im praying harder than i thought i could ever pray. i beg her to just comfort me. i know she is free which is the only thing keeping me moving onto that next second of the day. we did lots of planning today. our family has been amazing but there are still so many choices to make, there is so much to do. i keep going from a dream to reality. when im in reality it scares me. i feel like i cant breathe. its been over 24 hours since i held my baby, since i kissed her face, since i held her hand, since i saw her. i cant handle this feeling. it hurts so bad. i got some pictures from a photographer from 'now i lay me down to sleep'. i cant believe how beautiful my makenzie is. ahhhhhhhh! she is so beautiful. i dont know how i was so blessed to be her mother. she is so amazing. i cant write much more.
her obituary will be in the tribune tomorrow. ill post it on here.
--i wont put her blanket down. i need anything and everything that will help me feel close to her.

Sunday, December 13, 2009

12/13/2009

To my amazing daughter,

thank you for giving me your life. thank you for loving me and your daddy. how blessed we are to know you and be your parents. your daddy and i have thought and prayed so hard for you esp. over the last couple weeks/days. we know your time is short here on earth and we want you to know these few months have given us more than we could have ever asked for in a lifetime. we are going to miss you beyond words. our hearts are broken and we are not sure how we will even wake up tomorrow with out you. the only thing that is getting us through is knowing your going to be free. please makenzie, go play, run, jump, laugh. we will be thinking about you every second of our day. we will always miss you. we will always love you. come back and visit and watch over all your family and friends here on earth. you are so loved by so many. you have changed the world in this short amount of time. your eyes, smile, spirit have touched so many lives but esp. your dad's and mine. we will send you balloons as much as possible so catch everyone. you forever will live in my heart.
keep dreaming with me muffin.
you are my world, my reason, my heart.
i love you to infinity.

love your mommy and daddy.

Thursday, December 10, 2009

her strength!

today is a good day for kenzie a harder day for mommy... ahhh I'm so tired of this roller coaster. i am so pleased with her nurse and rt today. they are awesome. she loves them to! she is feeling better, more comfortable and happy.
last night ryan and i were asked a question by the doc. "if kenzie's heart was to stop or she was to extubate herself, would we ask they DNR (do not resuscitate)"
among being totally shocked at that question i thought i don't think any parent should be asked that because what other response would you say other than- umm hell yeah, that's my child, save her! how are you suppose to even think about that and really think about what you would want them to do in a matter of a few minutes? i know we have some horrible choices to make and our choices are very similar to that question but when you're faced with a question like that it really throws you off. well it did me. i just thought right now we have a choice and its up to us when makenzie will return to heaven, whether its sooner or later. if something unexpected happened it would be out of our power, i still haven't decided if that would be a good thing or bad thing. the only thing i know is before makenzie returns to God, ryan and i want to be the ones who hand her over. we want her to go in peace, in a room full of love and family. we don't want her to have a shadow of a doubt how much we love her when she leaves us.

these choices are really unfair and i have yet to understand why we have to make it. we are dealing with it and we are making this decision based on what we feel will be best for our family and what makenzie really wants. we talk to her and i feel she is talking to us through her eyes and soul. she is such an amazing little girl. i don't know how we got so blessed to be her parents. if she was to go tomorrow, i would thank the Lord from the bottom of my heart for giving us the most amazing gift we could ever dream of. until you become a parent you will never understand a love like this, until you are faced with your child's life in your hands you will never understand how much you really love your child. its an amazing feeling to know you will give anything and everything for them. i have always said that but the emotions you go through when you in the middle of it are imaginable. makenzie is a real life angel. she was sent to this earth to make this place a little better. her strength inspires me everyday. something as simple as breathing is not even a thought in my mind but to her, she spend the first few months of her life fighting to just do that.

last Tuesday before we got the SMARD news they were planning on extubating makenzie. the night before i sat by her bed dreaming about holding her, taking her on walks, bringing her home and letting her have freedom. that morning was a happy morning, i was still planning on being tubeless at 11 am! we watched the clock, i kept telling her just a few more minutes... we were both excited. some little things came up which delayed it to after 12. a doctor, an RT and her nurse came in the room to make sure things went okay. they put oxygen in her nose the same moment they took her tube out. i was holding her hand and stroking her face. immediately she was in distress. she was arching her back, throwing her body all over, gasping for air. they turned her oxygen up to 100. she was still in the low 90's which wasn't bad but you could see she couldn't catch a breath. she got pale and started to foam at her mouth. i was trying to calm her down and kept asking her to breath, just settle down and breath. she wouldn't take her eyes off mine. i could see in her eyes she was begging me to help her. i will never forget her eyes. it felt like it was hours but it was only minutes before they told me she wasn't strong enough and they needed to re-intubate her. ahhh my heart was broken but i just told her how proud i was of her and that she did an amazing job. i went out while they sedated her and put the tube back down her throat. it was the next day they did an ultra sound of her diaphragm and found it to be paralyzed. it was not always paralyzed, that's what SMA does, when you don't use it, you lose it. she was probably close to losing it anyway before she was intubated. she was trying so hard everyday. she is so strong and i am so proud of her.

** this is an example of how amazing this little girl is. her joy this day was these balloons. a special friend gave them to her, thank you! she loves them... it keeps her mind off some of the hard moments and makes her happy. I think she will be showered with balloons in heaven**



Wednesday, December 9, 2009

she is sleeping so i blog.

my babe is asleep so i figure instead of staring at her and waking her up ill blog a bit... yesterday was a great day for kenzie and i. a great day meaning it was just her and i all day. i told her story's i imagined i would tell her when she got older, i sang her songs i thought we would sing together, i told her about when she was born, i told her how much i love her, i talked about meeting her daddy and what an amazing father he is. we laughed- well i laughed, she would have if she could make noise. she was smiling soooo big. i kept blowing in her arm pit. she thought it was hilarious. i know how funny i am so it was refreshing to see that makenzie got to see a little bit of that. i held her quite a bit. i would say 3 or so hours throughout the day. it was simply amazing. i feel so lucky to have my daughter, for however long that maybe. i feel peace today. i don't feel this all that often so its good to feel it and i needed to write it down.

this morning was a rough morning for kenzie. i feel bad for some of these adorable nurses because i have learned i like things a certain way and i have learned what is normal and not normal for makenzie. when they do it differently i get a little upset. this poor girl this morning I'm sure wanted to call security while i was demanding the RT and drugs for kenzie. she was so uncomfortable and i could tell she was having trouble breathing. i know it sounds weird- (I'm not a doctor i know) but even though her stats were fine i could see her and i saw that look in her eyes and i knew she needed help. after battling for a while i convinced her to get someone to help. she got another nurse who came in and sucked out the biggest mucus plug i have ever seen. i later told her i was sorry for being rude and i didn't mean to but when your child is crying and throwing her body around when she usually lays there i know something is wrong. i hope kenzie knows i would have always stood by her side and been her voice and strength when she needed me.

kenzie got a bath this afternoon. she melted into that water and i know she didn't ever want to get out. i hope heaven has a pool or a hot bath for her.

her room is full of fun pictures, colorful balloons and cute stuffed animals. kenz is one lucky little girl. i read to her and i cant tell you how much she loves books. the jazz came by last week and she got a signed basketball, small just like her. it was pretty awesome.

i love everyone here at PCMC. her nurses are awesome and her RT's have been out of this world. i fall in love with each of them. its weird how fast you can trust someone with your child when you really find that amazing person. I'm so grateful for everyone here. they have made this horrible experience a little better.
i wanted to thank, from the bottom of my heart, every single one of you out there for your prayers, thoughts, hugs, visits, phone calls, text messages, gifts, everything you have done for our family. it has not gone unnoticed. I'm sorry i haven't responded to all of you and i haven't called some of you back but please understand its not because i don't want to talk to you its just because my mind is scattered and in another world. i love you all so much and even if we have never met, i talk to makenzie about you and our whole family is grateful for you.

Monday, December 7, 2009

uncertain about anything

when it comes to your child's life I'm not sure if you can ever really feel peace or 100% certainty in what your decision is. when your child's future is in your hands and you have to make a decision on what kind of life they will lead it leaves you totally helpless. i cant let my makenzie go but i also cant see watching her live the life she could lead. i understand she could be the exception and the miracle but I'm scared to death to see what could happen if she wasn't the exception. i think about how long i may or may not have with makenzie and i ask myself, if i was to trach and vent her and bring her home would that be for me or for her? would i be able to give her the life she deserves to have? i will always learn from kenzie, no matter how long she is here i know i will learn from her. she has already taught me so much. her eyes tell me story's and her strength and determination to just breath inspire me. i think about life if she was to come home with us, i would treasure everyday. i would hold her and love her and give her everything i could possibly give her. if i was to let her go to heaven now, i would be setting her free. i would be giving her a voice, i would be letting her run and play and breath. there will be so much heartache either way i go. ryan and i feel like we have made a decision, we will feel peace then out of now where i will change my mind. i will freak out, hate the world, yell at God and just cry.

i should really write when i feel peace, right now, not so much. i did earlier today though.
i sit next to kenzie in that bed, she is not happy, she hates her treatments, she hates these tubes, she hates not being held. every time they come in it seems something else is wrong. something new.

i was looking at our video camera today, seeing her just a few weeks ago let alone a few months ago breaks my heart. you look back and can see the change. i can see the change in just the few weeks we have been here. my heart hurts more than i can describe. I'm scared that when she is gone i will not be able to breath. ryan and i are leaning on each other so much right now and i couldn't do this without him. my dreams of our family are changing again. I'm still in denial. i still think she will be here for forever. i shouldn't have to plan my child's death. i shouldn't have to say the day when her life will end. i have never relayed on prayer much, until now. I'm praying to God, yelling at God, crying to God. I'm asking the angels to hold my daughter. there are moments i cant comfort her. she looks at me and i can see in her eyes she is tired. i see her perfect body now and wish i could hold onto it forever. just sit and rock her. kiss her face. hold her hand. i hate knowing i wont have that much longer. i hold her hand every chance i get, i look at her fingers and put her tiny palm in mine. i stroke her arms and legs, i kiss every part of her body. on a daily basis usually many times a day i collapse over her. we cry together sometimes, sometimes i cry alone while she smiles, sometimes i cry while she looks at me like I'm crazy. i don't let the nurses change her butt, its one thing that makes me still feel like her mom. i have so little control right now.
I'm the only one that changes her gtube dressing, i paint her nails, i change her leggins, i bathe her. i hold onto anything i can. i know i will not be able to do or see many of the things mom's should be promised to do with their children such as watch them get their first tooth, crawl, clap, walk, laugh, talk or dance. I'm overjoyed i got the time i did with her. I'm glad those first 2 months were perfect. she was perfect. I'm glad that in these last 2.5 months i have been able to comfort her and help her. i know she loves me, i know she loves her daddy, i know she loves harley, i know she loves every aunt, uncle, cousin and her amazing grandparents. she loves everyone she sees. i know she would have made big changes to this world and changed many lives.

Sunday, December 6, 2009

sunday

what a day... our little miss kenzie had a rough morning. since she was throwing up last night, which she shouldn't be able to do, they did a chest xray this morning. it showed a LARGE air bubble again. this shouldn't be there either because it should be able to vent through her gtube. they unhooked her gtube feeding, stuck another feeding tube down her nose into her intestines. they put another tube into her other nostril down into her belly to suck out the air. so our princess is back to 3 tubes down every hole in her face. she isn't as happy as she has been but i don't blame her. her xray also showed her lung secretions have really built up- her left lower is almost collapsed. they put more pressure into her breathing tube (or increased the PEEP for those who know what that means).

ryan and i have had a hard day. i held makenzie for a couple hours which was amazing. it was the only thing i could do to calm myself. i find myself shaking quite a bit.

Saturday, December 5, 2009

alone day...

today was a very hard day yet a very needed day. ryan and i spent it alone together with kenzie + doctors and nurses. we decided we would 'try on' our decisions today. for part of the day we would live like we made one choice, we would plan things, talk about what we would do next and how it would effect our lives. the other part of the day we talked about the other decision. it was full of tears. our life has become something we never thought would ever happen. i never thought we would be making these choices. i look at my daughter and struggle with what to do. i think i would do anything to keep her here in my arms. to keep her happy as much as possible and to give her the best life i possibly could. i just think, I'm not sure that's enough. my 4 month old cant breath on her own, she is at the best she will be physically. we are not sure how fast but all her functions will go. every 3 hrs. or so, she will hate us. we will have to do cpt and cough assist and throughout the day suck out her secretions. will i be able to give her enough happiness to over rule those moments? my daughter will not learn to crawl or walk, she will never dance. would i be okay to sit by knowing she would never be able to do that? kenzie may only be in our lives for a couple years- during that time, would it benefit her to be here on this earth or would she be better in heaven? if i choose to take her home with ryan and i trach and vented would that be selfish of me? would i be keeping her from being free in heaven? we talked to makenzie today- this girl is hard to read sometimes. i kept trying to see what her eyes were telling me but couldn't quite figure it out. i have prayed to God to help me, i feel a little more peace with one decision but not enough to make that decision. I'm not ready. we are not ready. to end our day, ryan and i went out to dinner during the time we get kicked out of the room for shift change. just a quick run to chillis. i haven't left the hospital other than thanksgiving since kenzie got here. it was weird to go out to eat without her. while sitting there watching all those other families with kids my heart broke. life has stopped for ryan and i but the world continues to go on. we were ready to have a family, to have our daughter with us wherever we go. now that she wont be able to do that- i want to scream and hit someone. she is our pride and joy, she was suppose to be with us forever. i am still not understanding why we are going through this. i don't understand why i cant have what most other people have and that's a healthy child. i hate that kenzie has to be in this position. we have talked to a few amazing people the last little while. they are going through similar situations. i wish i could hug them. they are all so strong, so empowering. i don't feel strong, i feel weak and i feel I'm going to crumble. we have so many choices to make and although everyone says there is no rush, there is a little rush because we have other things we need to get in order sooner rather than later but they all depend on our decision. my heart hurts so bad.

kenzie has had a pretty good day. she has been really upset a couple times and they had to give her some medication. earlier this evening she threw up twice on me, after we go her back in bed she did it again. it wouldn't seem like a big deal but when she got her gtube she also got a nissen which prevents any throwing up or reflux. they didn't know why she was throwing up but she is doing fine now so they are not worried. if i was at home and that happened, i probably would have passed out. i get so nervous about everything, every noise, every movement or non movement.
kenz got another bath today. hooray. she loved it again. she is so beautiful.

Friday, December 4, 2009

wishing...

its been hard for me to write anything on here since we found out about our sweet baby. i just start crying thinking about what to write. i used to be the person who read these stories about other families and thinking i would just die in their situation. i came across one right before kenzie was born, this sweet family lost their daughter and i lost it right there in my chair at work. (just ask anyone there, I'm a ball baby and wear my emotions on my sleeve... sorry greg)
anyway- i would read that blog praying that God protect my baby, i begged him to give me a perfect child and if that's all he ever gave me i wouldn't ask for another thing. the moment i first saw makenzie will forever be etched into my mind. i close my eyes and see that incredible moment. she was small and had a small layer of goo on her. as they took her out, her arms stretched straight out as far as they would go, her fingers were all spread out and the moment she was placed on my chest her eyes popped open. her head, eyes, arms were so beautiful. when they broke my water they saw she pooped so they had to quickly take her away to suck her out before she could cry. i couldn't believe she was here. the moment i dreamed of since i was 5. they couldn't get her to cry and were really nervous about her, after 20 min. (which seemed like hours) they decided she was just a very content little girl and didn't want to cry. they bundled her up and brought her to me. her eyes still open, she stared at me. i fell so hard in love i honestly cant explain the feeling. she was mine and i couldn't have imagined a more beautiful child. she was my world and i was living for her from that moment on. she never did cry until after we got home from the hospital. she has always been amazing. i have felt like i got a miracle baby because she was tooo easy. life at home was a dream. i had an amazing husband and this out of this world child. i couldn't ask for more. every night we would bathe her, read her a story and i would rock her telling her how much i loved every inch of her body and just gaze into her eyes feeling like my world was complete. we would think of a dream to dream together because i didn't want a moment to go by without us being together, so since we were sleeping we would be together in our dreams. i would lay her in her bed, give her a million kisses and finally break away and go to bed... well go lay in bed and watch her for a while in our video monitor. i really don't have a single complaint about her, about being a mother, about anything.

tonight, I'm giving her kisses knowing I'm not sure how many more times i can kiss her. I'm telling her dreams we will have in the future so when she isn't here anymore we will still be together in our dreams. I'm reading story's. I'm giving her a bath whenever possible...







they don't give full on baths here in the picu only sponge baths so over the last few days when they saw me in hysterics just because i wanted to give my daughter a bath they made that happen. it was the best sight i have ever seen. she was happy. they say baby's with sma love water because its a time they fell free. kenzie has always loved the water- i wanted her to feel free for just a moment. she had a great time but i really think ryan and i had a better time.

this was a few pics i took after her bath. just because. I'm trying to capture everything about her. i have to have every memory so i can remember later.
** yes she only has one foot painted. the other was covered with an iv in it so i couldn't paint it yet. its not painted and they look fabulous!
i am trying to make kenzie the most comfortable every second of the day. i know she is having a hard time laying in that bed so any little thing i can do for her I'm all over. i saw a little girl with one of these chair things in her crib the other day so i asked if kenzie could test it out... we wont sit her so high next time but i think she really liked it for a while. she was happy to be able to sit up and be a big girl for a moment.

** her leggings are a big hit here... i change them everyday so the nurses and doctors have to stop by just to see what new pair she is wearing today.
most my days and nights are spent just watching my baby. she is so perfect. those dumb tubes have never looked so good on anyone. she is incredible. while trying to understand whats going on in our life and what to do next I'm reminded on a regular basis how special kenzie is. God gave her to ryan and i for a reason. I'm not sure why we are the ones to have to go through this and I'm still angry but I'm trying to work through this. I'm trying to figure out what is going to be the best option for my daughter. while sitting next to her and stroking her face and her hair i hate to say i don't know how i will survive without her. she is what keeps me breathing everyday. i don't know how i will breath without her....

i need these eyes... this smile...
look how amazing she is-
life is crumbing around us and she lays there and smiles at us. how is it my 4 month old is stronger than me? how is it that she has those eyes that could melt your soul? she makes me feel something i have never felt before she blessed me with her life.



ryan finally got to hold his little girl. he hasn't been able to hold her since she was admitted on nov.17... they let me a little but they had to restrict her movement so he kept telling me to just hold her. he knew how much i needed that little moment. I'm so unbelievably happy he was able to just hold her because i know they both needed each other to. kenzie sure loves her dad. ryan sure loves kenzie. these 2 are such amazing spirits. i believe they were meant to be together, to fall in love, to be in each others lives.



our family will never be the same without this beautiful girl. she has given us more joy than we could have ever imagined. although i still cant think much about the decisions we have to make because they are so unimaginable, i know my time is limited.


our family is soon going to be missing the best part. the sorrow is beyond words. its like something is completely crushing me every second of the day. my dreams for my daughter are now going to be given to God. she will be in heaven soon. we are still not sure when but we do know we wont be able to grow old with her. she was meant to be here and to change our lives which she has but she never has had to prove anything.
i knew the moment i saw her for the first time, she was perfect. she has given me the greatest blessing i could ever dream. our emotions are running wild. today was a good day for kenzie. they have stopped doing testing on her which means less needle pricks. she slept a lot. she smiled. she waved her arms around. she saw the people she loves so much and who love her.
tomorrow we are asking for no visitors... ryan and i have been on such a wild roller coaster and we haven't been able to slow down long enough to really talk to each other about the choices we are needing to make. we are going to spend the day with makenzie. we want to do things to make her happy. we are going to give her a bath. we are going to buy her a balloon. we are going to play peek a boo. we are going to snuggle her best as possible. we are going to talk to her and ask her what she wants. her body has already made the decision to not be on this earth very long but i hope she can help ryan and i know what to do next and how much longer we can be blessed with her in our life. I'm scared at what she will want. I'm scared at what will happen because i don't want to make this decision. i don't want to be in this place. i want to be home, i want to hold my daughter, i want to play with her, i want to lay next to her. i don't want her to be hooked up to all these tubes, vents, needles... i wish our nightmare would end. i wish i could make this decision. i wish it wasn't this outcome.
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