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**



19 comments :

starnes family said...

She is so strong and so are you.

I was asked the same question about my 30 year old sister recently. She suffers from Scleroderma and Pulmonary Artery Hyptertension. She was in bad shape at the time and they asked me what I'd like done should her heart stop. I'll never fully recover from that moment. I love her like one of my children.

I'm praying for more strength and grace for you and your sweet husband.

TMI Tara said...

It's amazing, I never thought that seeing a small infant gaze at balloons would be a symbol of strength, but it truly is. Thank you for teaching me about true strength, Kenzie. You are so amazing and such an example to me! We love you!!!

Codi said...

Kendra -
I just wanted to comment again and let you know I think of you and your family every single day. I'm continually praying for all of you.

You are such an amazing mom and even though we've never met, your love and powerful bond with your daughter comes across so strong.

Thanks for sharing...your words are so pure.

Codi
(Caitlin Newland's sister)

Emma said...

Kenzie is teaching so many people about life, love and strength...which she gets from you!! You are doing amazing, each step of this journey with her, trust yourself. She can feel the love you have for her, I have no doubt, we all can.
I will be praying for another good day, for all of you, with moments of peace overcoming you when you need them. Take care, Emma

malory said...

Ahh kendra you are such an amazing person and such a wonderful mom. Kenzie is so so lucky to have you and Ryan. You inspire me in so many ways, and I'm so sorry you're going through this. Its really not fair at all. As always, please let me know if you need anything.

Love,
Malory Drage

Mother 25 - 8 said...

I read most of your blog yesterday and today. I fell asleep thinking of you both last night and have kept you in my thoughts and prayers all day today. I am speechless, yet have so many thoughts centered around you both. My children have a nicer mom because of the things I've learned through your words. Your strength and insight and love and devotion have endeared me to you. The Lord loves you all so much. He obviously is greatful that He had you to send Kenzie to you. Hers is a special mission. All God's children have special missions, Kenzie's and yours has just really influenced me. He will call you both blessed some day.
You will all be in my thoughts, prayers, and affect my actions as a mother. May God bless you.

Devon said...

She is an angel girl. And you're right, no one should ever have to be asked that question...it's a horrible feeling. Kendra, if you want to talk please call me. I'm here to help, if I can at all.

YOU ARE AMAZING. DON'T FORGET IT.

Alerie said...

Makenzie is absolutely amazing!! I am in awe of her everyday. She brings me so much happiness and has touched my heart in ways that I never knew someone could that I didn't know. So have you and your husband. YOUR strength is admirable. You are WONDERFUL parents and you inspire me everyday. I love that you sing to her and tell her stories. I am sure she LOVES that. I have no doubt in my mind that she knows that she has the BEST parents and is so loved by you and Ryan. Thank you for sharing these pictures. They are beautiful. I love that she was able to have this moment. You are in my prayers daily.

Dyreng Family said...

Kendra, Ryan and Mackenzie-
We have followed your blog for several weeks now. Just wanted to let you know our prayers are with you. Not a day goes by that we don't think about each of you.

Your strength is such an example to us. Heavenly Father knew that Kenzie would be in good hands on her journey to this earth with family like you. May you continue to feel his love. I know he is near and is aware of your struggles and loves each of you very much.

Thank you for sharing this blog with us. With Love, Kevin and Julie Dyreng

Nana said...

She is such a sweet little thing. I believe the strongest spirits are sent to earth with the most challenges. They just need to grace us with their love and what a love that is!!!!! I too have been thinking of your family and praying. The Lord is watching. He knows what you are going through.

All my best-
Tami

Gaspegirl said...

(((hugs))) and prayers being sent to you and your family.

Marge

Sam and Julie said...

Kendra,

I found your blog through a friend and am completely touched. There are no words to tell you how much my heart goes out to you for the agony are going through. Kenzie is a beautiful and precious gift and I thank you for sharing her with us.

What a blessing you all are to everyone who has the privilege of getting to know you. Your words remind me to hug my son a little tighter, a little longer, gives me patience when the 100th tantrum of the day comes, gives me wisdom to look at the moment Im in with him, and cherish it. Thank you for making me a better Mom.

You three are amazing.

xoxo

Lesley said...

Last week I found your blog through another. I read all of your posts about your beautiful baby girl and the struggles your family is going through. I experienced a similar but different situation 19 years ago, when my only daughter was diagnosed with a terminal brain tumor. You are in my thoughts and prayers. You sound like a wonderful young woman and your daughter is so lucky to have you for a mom. May the Lord bless you and your husband and your precious daughter.

Jeff Black said...

I will pray for you and all your decision that you will have to make. Your daughter reminds me so much of my daughter. She went to heaven 4 weeks ago. Enjoy every moment with her.

Shanna said...

Kendra, my name is Shanna Bentley, I am actually in your ward, we just moved here in May. I just wanted you to know that we have been praying and fasting for you guys. I can't even imagine, I'm sorry for this heartache that you are going through. Please know our thoughts are with you.

Karen Black said...

I am amazed at how much your story reminds me of ours. Our beautiful daughter was also diagnosed with SMARD. She passed away last month, and now is even more beautiful in Heaven.

I pray that you will have strength, peace, and courage to face the days ahead.

Together, you and your husband can be stronger than you might realize.

Karen (of Jeff & Karen)

Anonymous said...

You and Ryan amaze me. You have such courage that makes us ALL STRONGER! She is truly a gift from GOD that has touched our hearts. Kenzie has made me look at life a lot differently. I want you to know if we can help you in any way please let us know.

Jim D

FROGGITY! said...

still thinking about you and praying for you. enjoy those sweet smiles and that gorgeous baby. she is a strong little one. and so precious! your in our prayers.

Emma said...

Just wanted you to know you have been in my thoughts and prayers this weekend. I hope you are seeing the love and strength you are pouring into your daughter and feeling it from her in those amazing eyes!! Keep doing what you are doing, you are doing amazing and all you can for that sweet little girl of yours and she knows it!! Hugs to you all, Emma

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