Monday, November 30, 2009

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, November 29, 2009

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...

Saturday, November 28, 2009

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.

Friday, November 27, 2009

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, November 25, 2009

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, November 24, 2009

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, November 22, 2009

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.

Saturday, November 21, 2009

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.

Monday, November 16, 2009

three years




Happy Anniversary! This day 3 years ago was amazing. We were married in the church I grew up in. My little brother walked me down the isle and we had a room filled with everyone we love. Our reception was at the energy solutions arena in one of the suites. We went on our honeymoon to southern Utah- This is kind of a funny little story.
I (like many brides) planned the whole wedding. Ryan had little to NO say in anything. Really he didnt want to. So I told him if I was to plan this wedding he needed to plan our honeymoon. My sweet husband didnt even think about what we were going to do until the month of November- When I found out he decided we would be staying at his Aunts bed and breakfast in Tropic Utah, I about died. I couldnt believe how little thought (I thought) he put into it. I didnt want to make a big deal out of it (I really didnt want to show my true colors until after we said I DO :) After our wonderful night at Little America after our wedding we headed down south. To my surprise, I couldnt have imagined a better honeymoon. It was a couple days full of just the 2 of us. Amazing food his sweet Aunt made every day for us, awesome adventures 4 wheeling through the mountains and visiting the beautiful sites. I still sit back and dream about that time. Every night Ryan drove me up some mountain and we watched the sun go down. It was perfect!




** Just a few pics of us over the years **






Ryan-
Thank you for giving me the best gift 3 years ago.
Thank you for becoming my partner
Thank you for giving me your happiest and lowest moments in life.
Your smile is the reason I go on, your love makes me want to be better.
You are my reason-my life-my family.
Thank you for loving me
Thank you for making me a Mom
I love you



I couldnt imagine a more perfect Happy ending.

Sunday, November 15, 2009

Utah Party!








Always an awesome night with the Anderson's!
Although it was a very sad game we still had a blast.
Thanks again Allie and Derek!

arghh!

Why is it that there are books on pregnancy, what to expect for your delivery and what to do after you bring that child home but there are no books or warnings on what you will be left with after those 9 months?!
Maybe people told me but I just thought oh that will never happen to me or I was so consumed with this baby in my tummy that I didn't listen. Either way- I see it now and I'm not so sure I think its fair. During pregnancy you are blessed with thicker more shiny locks after you have your baby, it all falls out- at the same time, I swear I feel like I'm going bald! As pregnancy continues your boobs get bigger, after your baby come they get lots bigger then- your done breastfeeding and you look like a 10 yr old girl again. Before you get pregnant you have smooth young looking skin, as your baby grows so does that smooth looking skin but it stretches more than grows so after that baby comes, you are left with saggy, squishy, stretchmarks on your saggy now squishy tummy.
On top of all that your hips get bigger and never go back, no matter how good your eating and exercising you don't shrink back within a few weeks or even months like you used to before you had a baby.
**For those blessed women that cant relate to this post- Good for you, but Don't leave a comment :)
Good thing this little girl laying next to me is totally worth it-
I just wish it was different :)

Tuesday, November 10, 2009

big girl


I cant get over how fast Makenzie is growing. She is getting so good at holding her head up during tummy time or anytime we are holding her. She is the sweetest girl-
I could just kiss her little face off.

it wont bring her down


Don't think a little surgery will bring down my baby full of joy.
She smiled and flirted with every doctor and nurse the whole time we were at Primarys.
After we got her home, this is how she was still.
** Well as long as I was holding her and not giving her medicine **



I'm so in love.
Ryan is so in love.
We are soooo blessed!

surgery

It has been a week full of anxiety, fear, love and unbelievable amounts of prayer.
Little Kenzie has had a rough ride her first few months of life.
I mentioned in my last post her difficulty breathing and it has been very difficult for her. She was constantly gasping for air. After her surgery they said when she would breath the little flaps of skin attached to her vocal cords would completely cover her air way, on top of that her vocal cords were a little large and would cover that layer of skin over her airway as well so she was having double trouble trying to breath. She also has very bad reflux which causes her to have upset tummy's and have a hard time eating. She ALSO is prone to have large air bubbles in her tummy which makes her very uncomfortable and in pain.
MY oh MY... My poor baby...
Whats so hard is we knew she had these problems, her doctors knew she had these problems yet we kept hearing she will grow out of it. They didn't really see the severity of it until last week. Her problems are pretty common with children/babies. They have these issues but are still able to breath and function fine and soon outgrow it. For Makenzie, she couldn't. She wasn't able to gain weight, she had no energy and it was getting worse almost by the day.
On Friday morning we were scheduled for surgery at 10:45 am. We arrived early and were greeted by Ryan's mom Becky (to my surprise she came up to sit with us while Kenzie was in surgery) We waited around for a while, watching the other babies who were getting ready to go back, singing and loving on Kenzie and praying harder than we have ever prayed.
Makenzie didn't go back until 11:45 am. Her nurse came and got Ryan and I, walked us back to the big double doors and said she was going to take Makenzie now and we should go into the waiting room. We gave her tons of kisses and handed our baby over to her nurse. I was a mess on the inside but luckily Becky was there to distract our thoughts and kept us talking about things other than Makenzie. 45 min. later her doctor came out to tell us everything went great. He showed us pictures of her throat and said she did have a very bad case of Laryngomalacia and they think this will really help her. He said Kenzie was waking up from the anesthesia pretty well and one parent could go in. I pretty much ran down the hall! Dr. ENT was amazing, he was so sweet to me even though I was a mess and couldn't stop thanking him for taking good care of my baby. I went into a busy room filled with baby beds and crying babies. Each bed was occupied with a child just waking up from surgery with Mothers or Fathers running to their side. Makenzie was the smallest one in that room by far. Her nurse let me pick her up and gave me a rocking chair to hold her in. She was still very much out of it but her eyes were open. One of the first things I noticed was the red line she had down the side of her face where the breathing tube was. She kept trying to cry but no noise would come out. They gave her some strong medication to help with the pain. During the next half hour they were trying to control her oxygen levels. I sat there and held a little oxygen mask to her face and tried to get her to drink sugar water. After they got her a room we headed up there. I just held her the whole time. Kissing her face.
We got into her room and Ryan and his Mom were finally able to come see her. We tried to get her to drink some pedialyte but she didn't want any of it. She was in and out of sleeping and we consistently stared at the heart/oxygen monitor making sure she was okay. They old me when her hear rate is up, that means she is in pain so you better believe I was on them like glue at the slightest sign her heart rate was going up so she wouldn't feel any pain.
Ryan had to go to work for a few hours so he left me and his Mom to love on Makenzie. Ryan's Aunt Carma who lives in St. George came up for the weekend and stopped by to see Kenzie to. They were both so amazing to stay with me and love on her. We talked for a while before they had to go. Makenzie finally drank some warm formula which prob. felt nice on her throat. She slept in my arms for a while before my Mom came. She tried to hold Makenzie but Kenzie only wanted her Mom. She tried to cry but sounded like a wounded kitten. It was so sad. After I got her back I tried to calm her down but she was so upset. I called the nurse in because she started turning blue and was acting like she couldn't breath. I looked at the monitor and her oxygen levels were in the 30's. They should be above 90. I was trying to stay calm but holding my blue baby was one of the worst feelings in the world. A few nurses rushed in. They cranked up her oxygen mask, put oxygen in her nose and just tried to help me any way possible. Her levels finally came back up.

I then wouldn't let anyone else hold her for fear she would get upset again. They ordered a chest xray to make sure there was nothing else going on. I again wouldn't let anyone else hold her so I carried her down to xray and the only time I didn't hold her was the few seconds they took pictures of her.

This is what they saw-- For those like me that really don't know what the heck is normal or not in an xray this is not. Do you see the darker circle oval thing in the right side of her body. Its taking up pretty much her whole bottom half. Well that's an air bubble. That HUGE thing that is covering her body. Its so big its squishing her lungs which are on the other side.
3 nurses came into her room after the xrays came through to "suck" her air bubble out. They shoved a large tube down her throat into her tummy that had a suction on it. You can only imagine how upset Makenzie was. I had to hold her down while they put that thing her mouth. She tried so hard to cry but she is still in pain so nothing really comes out but a little squeak. They thought they got it so they stopped after a few trys. I have to say- PURE TRAUMA for Mama... I will never get that image out of my mind.
That night Kenzies Aunt Brooke came to visit and Dad finally got back to the hospital. We both stayed there that night with her. They were going to slowly try to get her off the oxygen but every time they would turn it down her levels would drop. She couldn't get air on her own. I stayed up that night holding her, trying to keep her comfy. I tried to feed her every hour to try and get something down her tummy. The next morning the nurses came to tell me she probably wouldn't be able to go home but the doctors would come talk to us. We waited and waited. Anytime I would put Makenzie down she would cry. Even when Ryan would hold her. At this point I was surviving on Dr. Pepper so I was needing to go potty alot. I would hold it until I almost wet my pants and run to the bathroom and run back. Of course then needing to calm my baby down. Her doc. decided they wanted her to stay another night and they moved us into a more permanent room since they didn't know for how long. I have to admit it was heaven, There was a window and a bathroom right inside the room! Hello :) Simple pleasures....
The nurses were all amazing. They took great care of us. On Saturday afternoon I meet with a Pulmonary doctor who examined Kenzies xrays and gave us his opinion. He said the reason she cant get off the oxygen right now is because her throat is so swollen from surgery. He suggested she get a steroid shot. Later that day she got her shot which was slowly injected into her IV over a 30 min period. Kenzie Hated this. I couldn't hold her and she could feel the cold going in her.

Starting at 10 pm they slowly turned the oxygen down to try and get her off it. Through the night anytime they turned it down her levels dropped so they turned it back up. Thankfully at 4 am. she was doing so well they turned the oxygen off and she kept her levels up. YEAH!!!!
She was like pinocchio... I kept singing - 'you've got no strings to hold you down'....
They did another chest xray that morning to see how her air bubble was doing.
Still there but her doctor said that she is just prone to having large air bubbles and we need to keep her on mylicon and do everything we can to burp her as often as possible.
Since she was doing so good off the oxygen Makenzie was told she could go home on Sunday morning!!!
We have to keep a close eye on her. She cant really let her cry right now because she tends to hold her breath. She sleeps in our room right next to the bed so I can check on her through the night and can listen to her breath.
She still has reflux and will continue on those medications. With this one problem fixed we are all hopping the rest will get better with time. I will meet with a diet specialist in the next 2 weeks to help me get Kenzie to start packing on some serious pounds.
So far everyday its getting better. Kenzie is eating more and more and her breathing seems to get better as well.


I cant explain how these last few days have changed me. I was changed the moment I found out I was pregnant, I was changed the minute I saw my daughter for the first time, I have been changing every day with her and I changed going through this. I cant explain the feeling you have when your laying next to your sick baby in the hospital. I know some people out there (mainly one family I have thought about quite a bit over the last few days) goes through this more than I could imagine. I know they are like I was this last weekend, over the moon when my baby did something that most don't even think about and that's breath. I am amazed by this family. I have cried several times in the last few days for this family.
My Makenzie is my world. She is my reason. Life continues to change with her in my life. She is helping me grow, become a better person, learn, experience, dream.
Thank you to everyone for your well wises, calls, texts, visits. I realize more than ever how blessed I am. My family, friends, co workers who are like family, strangers, nurses, doctors... You have given me strength, love and comfort. Thank you for loving my baby and thank you for thinking of us!
** Im sure I have left some things out so if you have questions ask and Ill answer them.
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