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.

update

Its almost impossible to begin to even write this post...
we have been on one hell of a roller coaster the last few days and now we have crashed. yesterday makenzies results came back for the sma test, it was negative. happiness, fear, joy, frustration were just a few emotions we were feeling. did that mean it was a good thing or a bad thing. the doctors were shocked. she was diagnosed as an sma baby, now its not true...
the doctors wanted to take a step back and look over everything once again, come back the next day (today) with a clear head and see what we would do next.

today-----
the doctors came back with a solution... they went back and looked at her chest xrays, all her charts, all the other many many tests they did over the last couple weeks and pretty much figured out what they think it is. they sent some blood to get another genetics test done which unfortunately could take 3 weeks - 3 months before we will get the results back. in the mean time, there is a test they can do and get immediate results to make a diagnosis.
they did an ultrasound of her chest, diaphragm. her diaphragm worked great while she was on the ventilator however once they turned it off her diaphragm just sat there. that means her diaphragm is paralyzed. the only neuromuscular disease that has a paralyzed diaphragm is whats call SMARD = spinal muscular atrophy with respiratory distress... this is a very rare type of sma... rare meaning only 5% of all sma patients have it.
smard is very similar to sma except it also has respiratory distress. that means instead of her muscles and nerves slowly deteriorating first, its her respiratory that goes first (the reason for her paralyzed diaphragm) then her muscles and nerves. this is different from just sma which is why her test came back negative.
what does this mean- we have a few ridiculously unimaginable options...
-we could leave makenzie here in the hospital on the ventilator until her little body gives up.
-we could get her a tracheotomy. this would mean she would be able to go home but it would also come with all the risks and responsibility's of having a trach. for kenz, it would be more than having a trach. she would have a much greater risk of getting sick and all sorts of different infections. this option would also have makenzie slowly deteriorating at home. most smard children are completely paralyzed before age 1 (not even able to lift a finger). they are not sure if she would make it to age 1 or if she would deteriorate sooner or maybe later. this would leave us to watch her slowly go.
-the last option would be to let our incredible little girl go now. take her off the ventilator and let her go in peace.

there is no easy way to write this. there is no easy way to make this decision. i want to run and scream. i cant believe this is happening.
i don't know how any parent could make that decision and now I'm in the middle of it.
of course i say right now, like many would, i don't care what i have to do or learn i just want her. but this really is not about me and what i want but what will give makenzie the best quality of life.
for kenzie she doesn't know any other life than the life she is living now so she would be used to this way of life but is it fair to her to live that life?
I'm in the middle of denial and excruciating pain. this is not how life was suppose to happen for her. i cant believe ryan and i are now in the position we need to choose our daughters life. i cant believe I'm not going to grow old with my daughter, i cant believe i wont be able to send her to school, watch her dance, take her to play dates. my world is crumbling and i am being buried alive. ryan is right here with me. we are both trying to be strong but no matter what we do our world is hell. I'm angry now. I'm sad, beyond sad and beyond angry. its not fair. i don't understand why this is happening to my baby. i don't understand why she cant just be a baby and grow up. i need her to yell at me and call me names when she is teenager, i need her to want to play barbies with me for hours when she is 6, i need her to be my best friend for the rest of our lives. i cant even write these words out and really express our pain. there is nothing to even say- our life is over in our eyes. its so hard to see how we can get past this. i cant imagine my life without her hands, her eyes, her smile, her feet, her tummy, her knees, her butt, her ears, her nose.... i don't know how i can wake up tomorrow knowing its one day closer to not having her. i don't even know what I'm suppose to do or think.
i cant even write another word-

11/16/09

The amazing MOLLY took these awesome pictures of our family the day before Makenzie came to the hospital. I cant tell you how grateful I am to have these esp. now.

Thank you Molly. They are amazing and I cant wait to get the rest.

heaven

over the last couple weeks i have unfortunately thought a lot about heaven. although I'm still praying everyday to let my baby grow old with me, i have faced the reality that its not about the future anymore, it about today and this moment. however, sitting in a hospital room with your child hooked up to machines your mind can wonder, esp in this hospital in the PICU.

i think many of us have a different idea what heaven looks like or will be like. for me and for my daughter, its full of bright colors. its full of country songs and people dancing around. there are lots of dogs to give everyone kisses, the beds are like balls of cotton. everyone is happy, we all run around without losing energy. the weather is perfect, you are never hot or cold, you are never unhappy. you can eat anything you want, there is not feeding tubes or breathing tubes. your never in pain. you never fall down when you are playing. you can have all the barbies you could ever dream of. you could spend a whole day just snuggling your baby. there are balloons around every corner for you to have. you can yell and scream in joy. their are jungle gyms and you can spin around on the bar all day. you can play hop scotch. you draw on every inch of the ground with chalk. you can do anything you want.

someday when makenzie isn't strong enough to keep fighting, i hope she is able to have all that and more. i hope she will be able to run, jump and climb. i hope she will never feel pain or fear again.

yesterday was a hard day in the picu. some beautiful little angels went to heaven. we knew one of those little angels and the last few days have cried with their family. it was a moment i wish no parent would ever have to experience. i cant stop thinking about those families. what they must be feeling. i will keep praying everyday and ask everyone else out there to pray for them as well.

fingers

I couldn't help but show off this little girl of mine a bit more. all she wants is her hands and fingers in her mouth. its not easy with that big tube in the way so i just about died when i saw her like this. she found a way to get her little finger in her mouth and is happy as can be.

sunday

After some much needed sleep last night- seriously the hospital chair is growing on me-
I woke up this morning with a more clear mind. I'm glad I vented and I think there will be many more posts like that in the future so thanks for letting me just let it out. I have to say one thing though, as much as I have my moments where I still wish things were different for Makenzie's sake and she didn't have to go through this, I couldn't and wouldn't change it for one minute if it meant I couldn't have her. She smiles at me under all her tubes, she waves her arms and legs around like she wants to get up and dance, she trys to sing even though nothing comes out and I love that about her. She inspires me.
Its been amazing the support I have receiving from family, friends, strangers who are now becoming my friends and so many others that just hear about us. We are blessed. God is probably overwhelmed with the amount of prayers he is receiving in regards to Makenzie. Thank you all. I cant even begin to know how much it touches my heart. This girl will have many rough roads ahead and I need to keep my head up, stay strong and keep walking for her. I will soon need to pick her up when she feels down and make sure she knows how incredible she is. Thank you all for picking me up now and helping me along.

Today went well. Our baby was a smile maniac. I'm learning more and more about her gtube and I now change her dressings alone. Something so strange but so awesome for me. I'm starting to feel like a nurse myself. Everyone is great but they do things different and in each of their own ways- me: not so much. I am open to new ideas and opinions but if I don't like it, ill tell you and you better do it my way. I think I'm starting to be the ANNOYING Mom and no one will want to be assigned to our room.

Tomorrow we are hoping to get the genetic test back to confirm Makenzie has SMA and give us an idea what type she is. IF for some reason the test comes back negative, they will start doing more testing to find out what neuromuscular disease she does have. They know she has some type but there is a small chance it could not be SMA but something else probably more rare than SMA. I hope to get the test back to officially get a title on whats going on. My heart keeps telling me SMA or something else similar but my mind keeps telling me something will change and they will find nothing. I look at her in this hospital bed and just don't understand. She is a different baby than she was a week ago. She has color in her face, she is gaining weight, she has a belly-her skin doesn't just hang on her body, she is kicking her legs and waving her arms, she has these incredible bright eyes that talk to you. I just cant really convince myself there is anything wrong with her.
I think it will really set in when an official diagnosis is made and at that point, I can take the bull by the horns and run. I can jump onto the band wagon and make our next step.

Until then... Ill still dream tonight that ill wake up from this nightmare and be home with Ryan, Makenzie and Harley...

a -not so good- moment like this...

I know I should stay strong, I know that I should realize how much I DO have instead of dwelling on the negative but today I could only do so much...
This morning was hard. I woke up thinking today is the day, my Makenzie would take her first step in the right direction by getting her breathing tube taken out. I even washed my hair for the occasion :)
I come into her room after the shift change and I'm greeted by my very upset daughter who was getting her CPT exercises done. As I'm trying to comfort my child one of the pediatric team doctors walks in with an EMT doctor talking about her chest xray that was taken that morning. All I heard was it didn't look good.... It looked much worse.... She was not going to be able to get extubated today....
Yeah my heart sunk. I was still trying to concentrate on helping Makenzie but couldn't help but demand to know what they were talking about. They told me her chest xray didn't look good. She had built up secretion again and parts of her lungs were collapsed. They needed to cancel extubating her today and would maybe try again in 4-5 days.
I was still trying to hold Kenzie down so she didn't get in the way of the CPT but I couldn't hold back my emotions. I just started sobbing. I don't really know why but I did. I had so much hope put into today. I dreamed the night before that I could finally hold my baby when I wanted and how I wanted. I could kiss her lips again. I would not have to hold her hands down so she didn't pull out the tube. Standing there holding my daughters arms so she wouldn't keep flailing them about I was so sad feeling like I wasn't really her Mom right now, in the sense I have NO control over most of her life and what is happening with her everyday. Most Moms have a schedule for their children, you eat at this time and this much, you sleep at this time, you play at this time, you bathe at this time, you hold them at this time. You don't let this or that happen. For me, I cant say, NO you cant do that, you cant put an IV into my daughter, you cant keep doing those CPT exercises, you cant keep her on that breathing tube, you will feed her this time not all the time, I will hold her for this amount of time whenever I want. I hate this feeling. So out of control and powerless.

Later in the day we found out a guy Ryan works with, his grandson was being flown to Primary's from Idaho. After they got here they found out he has Leukemia. I sat watching his poor mother who like me, was home with her child one minute and the next in the hospital hearing your doctor tell you this life changing thing. I felt so bad for her. Her son is only 4 days older than Makenzie. I hated sitting in that room, Its not fair. These children are so small and so young. They should be guaranteed a life, a future, dreams. Its not fair they have to be the strong ones now and fight for their life.

Later this evening I was helping Makenzies nurse give her a sponge bath because she was really starting to smell. I have been learning about her gtube and how to care for it. I was gently rolling my hand across her belly and her scares from the surgery when I felt a large lump. I asked the nurse what it was and she didn't know. She called the doctor in who felt it then they both walked out the room. The nurse came back in a few minutes later and told me she was going to watch it. I have learned very quickly that when doctors or nurses go out of the room to talk, they think its something but are not sure so they will just say, 'we will watch it' until they figure out what it is. They weighed her, she is down. 9.13 lbs. AHHHHHH....
I don't understand... They gave me some, well maybe this or that as to why she lost weight but again this is something I wont know why until maybe tomorrow. I hate this... I hate seeing my baby go through this. LUCKILY they let me hold her. They wouldn't let me last night which just about killed me. I was sooo happy snuggling my baby but she got restless soon and her dumb machines weren't working great so they had to put her back in her bed after about 20 minutes.
20 minutes to hold your baby over a 2 day period could drive a Mother to seriously hurt someone!

I think the worst part by far about this whole thing, looking into Makenzies eyes. She knows whats going on but doesn't understand why. I hate that she has to go through this alone in a sense. She cant talk, she cant have this explained to her, she cant be buttered up with candy or a new toy. She is tiny, weak, voiceless. I wish I could just get into her mind and speak in a language she could understand. At the same time, I don't understand. I don't understand why any child has to suffer. I don't understand how this trial is going to help them grow- what if they don't grow? What if this is the end of the road for them? Why does she have to pay for me to grow? Why cant I grow in another way?
I feel powerless, helpless, hopeless.... I hate feeling like this... I wish I could kick myself. I know tomorrow is a new day and will be better. I will make sure it is. I still have my incredible little girl and that's what matters but I think I have the right to have a moment like this once in a while.

a look back...

The weekend before Makenzie came to the hospital I was desperate to get this girl to just eat. If you don't remember, after her surgery on Nov. 6 she didn't want to eat at all anymore. She would fight and fight. I didn't know what else to do. In an attempt to plump my skin and bones baby up I gave her rice cereal. Yeah that didn't go any better. She maybe got a small taste down her throat but spit it out. I still thought she looked pretty cute eating her first foods!




I love this last picture of her. She has the sweetest face I have ever seen and this picture just makes me laugh. I was having a hard moment this evening watching my little girl lay in that bed, unable to hold her, unable to feed her, unable to do a lot of the things I did with her just 2 weeks ago. I have almost forgot our life then. How is that possible to forget so fast? It seems abnormally normal to sleep in a small chair next to my baby's bed, to shower in a shared shower with gross hair on the ground, to say goodbye to Ryan every night.
We have made some big decisions these past few days. I think the hardest part of it all is that we have no other choice. I'm so used to having a choice and making a decision based on what I feel is best, this time, its not possible. Our world has completely changed, we are doing things and making sacrifices we swore 2 weeks ago we would never make. When we are suddenly faced with our daughters life its doesn't even cross our mind what we are doing and what is going to happen until it you have a silent moment. You sit back and realize what is going to now be happening and its so scary. We are doing things we never dreamed of doing. I know you say when your outside of a situation, I would do anything for this person or that person esp. when it comes to your child. Its now here and we are doing that. I don't think you could ever imagine that feeling unless you are in it. I love Makenzie with all my heart. She is why we are doing this. As I sat there holding her tiny fingers, rubbing her tiny legs, kissing her tiny ears it amazed me to actually think, I would live on the street with nothing to make sure she is taken care of.
** Tomorrow at noon they are attempting to extubate her (take her breathing tube out). They are not sure how it will go and what will happen. Her vocal cords are still very much in question and we don't know if they are going to still be paralyzed closed. If that's the case she will go back on the breathing tube until they can figure out what we will do next. I'm just hoping she will do good without it. I want to hold her so badly. I am not thinking farther than that right now.

Get Fat Day...

This time last year I found out I was pregnant just a week earlier. I was so happy knowing our next Thanksgiving would be spent with our brand new baby. I found the cutest 1st Thanksgiving outfit that would work for both a boy or girl. It came with this cute turkey bib. I had dreams of dressing her up, eating dinner with family and really having it all.
Fast forward a year.
I found out a week earlier my daughter may have a chronic genetic disease. I hated the fact that she couldn't smell her first Thanksgiving dinner, I hated that the morning of this great holiday I couldn't stop crying knowing I wouldn't be able to take my daughter to her first Thanksgiving. I was sad that I couldn't dress her in her 1st thanksgiving outfit.


however....

Because I have an amazing bunch of family and friends and one out of this world husband...

I was finally able to realize half way through the day how blessed I am and that I need to think about the good instead of the not so good.

I look at those eyes and I cant begin to explain what happens to me. Life is great. I have her. I know her and I am able to love her. I will spend every moment of Makenzie's life trying to give her the world.

Thank you family and friends for your love, your support, prayers, hugs, kisses, food...

Thank you doctors for working everyday to help my baby. Thank you for falling in love with her every time you see her.

Thank you nurses for treating my baby with such love and care.

Thank you Ryan for holding me up right now. I would have not made it to today without you.

Thank you Makenzie for showing me a new world. For choosing me to be your Mother.

Hope all had a great day as well.

a new everyday...

Makenzie has CPT and cough assist every 3 hours.

Dumb IV's failing which causes fat feet... Trying to elevate so the swelling goes down.

Double IV's in her hands... Angry because all she wants is her dang fingers!

** yes they were able to cut her bink to fit around her breathing tube.

I thought this was cute. When Kenz had to be put to sleep before surgery they gave her some gas through this teeny tiny mask.

This is our new everyday...

wednesday

last night was a rough night for makenzie. one of her iv's in her foot failed so they had to put it in the other. the foot that the iv failed on was huge and puffy. it felt like a balloon blown up. i hated that. this evening the same thing happened with the other foot so they had to move the iv into her hand. my baby now has 2 iv's, one in each hand. she hates it. she only wants to suck on her fingers. during the day she did great. she was smiley and comfortable. they weighed her tonight- her weight.... 10.5 lbs!!!!!!!!!!!!!!!!!!

whoooo hoooooooooooooooooooooooooooooooooooooooooo!

she is growing. considering she checked in the hospital last week and was 8 lbs we are so happy. she started getting formula through her gtube today. she seems to be doing good so far. its very interesting to me to see all these new things with my child. i have a on/off switch (so to speak) on her belly. its really more a lock and unlock but still, its cool. I'm learning those kinds of things are better to be viewed as cool other wise ill break down thinking she has this gadget coming out of her belly.

i got to hold her this afternoon which was wonderful for both makenzie and myself. we both love this time and cherish it so much. i kept making this girl smile all day, it was awesome.
makenzie got a blanket today, it was donated by some amazing person. its really cute, pink fleece with flowers! everyday is another day I'm learning how i will be caring for my child at home. i am learning more about SMA and what is happening with her body. she is doing better and i couldn't be more impressed with her will power to do anything.

I'm always learning new things about SMA-- there is so much information out there, from one extreme to another. the thing to remember about SMA is every child is different. what might happen to one may not happen to the next. click here to learn more.

thanksgiving eve

happy first thanksgiving my little peanut...
i know this was not what we thought would be happening when you saw your first turkey or smelled your first pumpkin pie but for right now in this moment i couldn't be more grateful for you.

i wish more than anything i could take this pain away from you. i wish i could lay in that bed instead of you. i wish i could get all those iv's in my arms and legs instead of you. i wish i could be the one struggling to breath instead of you. i wish i was the one that didn't know what life would be for me tomorrow let alone next year. you are my inspiration makenzie. you are keeping me going and making me grow. sometimes i wish i didn't have to grow this way. i wish we were home and i was enjoying you eating your first foods and learning to roll over instead of laying in this hospital bed trying just to gain weight and become strong.

i cry when they poke you with needles, you cry a little then stop and look at me like I'm crazy.
i cry when they tell me they just don't know what life, if any, you will have. you look at me and smile because you don't care about any moment but right now.
i cry when i see both your hands covered with an iv in each one. you find a way to still get a thumb or finger tip in your mouth which is all you want.
your teaching me so much baby.

although we maybe having our struggles, i cant forget about our blessings.
we are blessed to have THE best doctor to help SMA right here in Utah.
we are blessed to have unbelievable family who love us unconditionally.
we are blessed to have incredible friends who are so supportive.
we are blessed to have wonderful nurses and doctors who fall in love with our baby every time they see her.
we are blessed to live in a state where we can be close to a hospital who is helping our baby.
we are blessed to have a partner to walk hand in hand with through this whole process.
we are beyond blessed to have this beautiful girl who is still very much with us and will not be giving up anytime soon.

for this thanksgiving i hope everyone really realizes how good we all have it. i hope we can all have a wonderful day, get fat and be with our loved ones.

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.

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.

sunday

i run to the computer any chance i can to read more about this sma.
i started my own journal in a notebook to remember everything i can but i figure i writting to others helps me vent- be a little free in what i say.
im scared. im angry.
i asked the doc. this morning what would happen if i just took her home today- not good.
she needs help. she is intibated, has a feeding tube and a suction tube. she is getting chunky-er... ryan and i were able to help give her a sponge bath last night. we were soooo excited. i think she liked it. i was able to hold her for a short time which was more than i could dream right now. i miss holding her. i miss playing with her. she doesnt look like she is in pain right now which is all i could ask for her. ryan stand over her tiny body and cry- she looks at us and says- 'hey, im the one laying here with tubes and iv's why are you crying?'
she trys to smile under it all. her bottom lip is all we can see. her nose will crinkle at times. i hold her hand and rub her head. i try to comfort her and let her know im here. i told her last night i dont care what she can or cant do in life, i dont care what she looks like i will love her and think she is perfect. i hope she knows that. my heart hurts all the time. i go through moments where i feel its not real. i have more than once pinched myself and prayed to God that i wake up, this cant be real. i soon realize i need to get over myself. its not about me. i need to be here and strong for her. we will have more testing done tomorrow. they gave her a break this weekend. she has been poked and druged enough for now. ryan is my rock. i find myself falling into his arms all the time. i have never prayed so hard. i will never take for granted my child. every little thing she does will mean the world to me. she is perfect. the hospital is freezing.
our family and friends are amazing. we couldnt go on without them. their love is so great. i cant stop crying so i better go. i have a few more things to look up and i need to go back to our new home and see my daughter.
GOD i wish i could take her home.

change

im really not sure where to start. life has taken a dramatic turn for our little family over the last day or so. our little makenzie is having a really hard time and is in the picu at primary childrens. she took a pretty bad turn last tuesday which resulted in her being rushed here in an ambulance. there is so much that has gone on and i only was able to break away for a moment. makenzie has been diagnosed with whats called spinal muscular atrophy. its really a very scary thing and to be honest im not really sure about much. i was going to quickly update my blog then do some research online. she is trying to stay strong and ryan and i are at times falling apart at the seems. we have some amazing family and friends who are being nothing less than amazing through this. we have some hard decisions to make coming up really soon and will try to keep this updated.