Tuesday, April 21, 2009

Back home




ABOVE IS A PICTURE OF KADEN TAKING HIS FIRST LOOK AT HIS MOMMY AND DADDY PRIOR TO HIS JOURNEY TO HEAVEN YESTERDAY



We have now been back at home for 24 hours. I did not want to be here this soon. I expected to be at the hospital for a much longer period of time....however long it took to take Kaden home with us. That did not happen and I'm still so angry about that. Anyways, this post is not about my anger. I just wanted to thank everybody for all the support that our family has received during this difficult time. We have worked on service plans for Kaden today. It is looking like it will be Friday, April 24th at 6PM at Bryan-Braker Funeral Home in Fairfield, Ca. Kristi and I still have to go down there tomorrow to make final arrangements. I will be sure to let everybody know by tomorrow evening when the plans are for sure. We are going to be asking that everybody in lieu of flowers make a donation to the Nayeli Faith Foundation that assists CDH families at UCSF. We will be posting information for the foundation tomorrow.

I also just wanted to share a moment that Kristi and I got to share with Kaden yesterday afternoon. Right after our meeting with the doctors, we went back to Kaden's bedside to spend all the time we could with him. As Kristi and I were talking to Kaden, telling him how much we love him and that he was going to be okay in Heaven, Kaden opened his little swollen eye to take a look at his mommy and daddy for the first time. This brought big tears to both me and Kristi's eyes. We are guessing that Kaden knew what was going on and that he wanted to see us before he made his journey to Heaven. We both felt such joy in being able to see Kaden's eyes for the first time.

Like I said before in past blogs....No matter what the outcome was for Kaden....we were going to continue to fight and make the world aware of CDH. This NASTY birth defect took our son and I will not be happy until we get the word out there to everybody. I want everybody in the world to know what CDH is and how bad it affects families throughout the world. I contacted the "Oprah Winfrey" show today as well as "The Dr.'s" telling them about Kaden's story and how we want to let the world know about CDH. I would love for Oprah to have us on her show and get worldwide publicity for CDH Awareness. Maybe if more people knew about this birth defect, they would fund more research to find a cause for it. Kaden deserves that as well as all of the other CDH babies that have gone to Heaven.

Once again, I would like to thank everybody for the tremendous amount of support that they have shown to Kaden and our family. I would also like to thank everybody at UCSF Medical Center for taking such good care of Kaden during his 17 days of life. Dr. Roberta Keller, Dr. Liz Rodgers, Dr. Carlos Botas, and Dr. Kat. RN's Stephanie, Cheryl, Kim, Ali, Crista, Jane, Sue, Nicole, Michelle, Mel, and all of the other RN's that took care of Kaden and us. We would also like to thank our OB nurse Sarah. Sarah was so caring and nice to us from the first night we went to UCSF. She checked on us several times as well as Kaden throughout the time we were at UCSF. Sarah also follows our blog....so thank you Sarah for your support. We would also like to give thanks to Stephanie Berman, our Social Worker. She took great care of us from the first time we met her. She really busted her butt to make sure that we were close to Kaden the entire time.

We would also like to thank everybody from Solano CHP and the Cordelia Scales for their generous donations to help us with expenses. It was very costly being at the hospital for 17 days. It will definitely help. Thank you to Grandma Mary for coming out here from South Carolina to stay at the house and take care of the kids for the last month. Thank you to Jose for assisting with whatever we have needed through this entire time. Jose has been with us the entire time every since we found out that Kaden had CDH at week 18. Jose was always there to help. Thank you to Auntie Megan for bringing us dinner so many times and keeping us company so many nights at the hospital. Thank you to Liz and Shane for all of your support and love for us and Kaden. We know that you are hurting too as well as many people are. Thank you to Shannon and Naomie for buying (4) pizza's last night before we even got back to the house so that we wouldn't have to worry about dinner as well as assisting us with the funeral arrangements and being there for the kids. Thank you Jacqueline and Eddie for making the beautiful photo album of our Journey with Baby Kaden. Thank you to Desiree and her mom for bringing us boxes full of groceries today. Thank you to Anne for bringing us dinner for tonight....everybody loved it. I want to also thank Richard and Leslie Ruff for sending us money to assist us. Thank you for all the support that we have received from our CDH family and everybody that has prayed for us and followed Kaden's blog. Thank you for anybody that we forgot to mention. I have alot on my mind and I'm sorry if I forgot to mention anybody. And last but not least, thank you to all of the families that have lost babies and still continue to support us. We love you all so much!

I would also like to tell my mom (Debbie) and Grandpa Bobbie as well as all of the crew that is with them cruising in the Caribbean, we love them. I tried to send my mom an emergency message through her travel agent to let her know what had happened with Kaden yesterday, but she did not get the message in time. She had to find out by logging on to the blog....I feel terrible about that. Mom- Please don't be upset. We love you and know that you love us and want to be here. Once again....try to enjoy your vacation. I still feel in my heart that you are here with us.

21 comments:

  1. Craig, Kristi, Jessica, Christopher, and Logan... I just have to say I love you! Much love and many prayers. btw.. I too have emailed the Drs and Oprah! Wouldn't it be awesome to both get on there and spread some CDH awareness.. and meet each other.

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  2. Also, since it sounds like you guys are already thinking about awareness things, Carter's mom, Kellie, started this today

    http://lettersforcdh.blogspot.com/

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  3. I have been thinking of you guys all day. I still can't believe all this is happening to so many GREAT moms and so many Beautiful babies that just want to stay here with their parents. I'm very very angry right know. Life is just not fair. I'm so sorry Kristi and Craig I wish I could help with your pain in some way but I know I can't. Kaden's journey reminds me of Joseph's and even though I didn't comment I always checked for updates. I didn't comment b/c I didn't want to say something wrong. Try to keep Jessica busy it will help her. I just wanted to let you know that we are here for you. Thanks for sharing Kaden's photo.

    Hugs,

    ~ Carla - Joseph's mom (2.3.09-2.26.09)

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  4. Craig and Kristi,
    You guys have been so strong throughout all of this. CDH is one heck of a journey, not matter how it ends. I don't feel like this is the end of the road for you though. Maybe together, through awareness, we can help others not have to receive this diagnosis at their "routine 2nd trimester ultra sound."
    Praying that you have the strength that you need to get through this very difficult time.
    Love and prayers,
    Sheryl & Tom

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  5. My heart continues to ache for all of you. Kaden was so strong and fought as hard and as long as he could. Your precious child has touched so many lives – those that knew Kaden personally and those that only got a chance to know him through your blog. Thank you for sharing your journey with so many of us.

    CDH is a terrible birth defect, and I hope that Oprah answers your call to bring awareness of it to the world so that one day other families will not need to endure the pain and heartache you and so many other CDH families are enduring.

    Keeping your family in my thoughts and prayers,

    Baby Kayla’s Grandma

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  6. Guys,

    I really hoped that Kaden would be the miracle. I prayed every moment of everyday that what they learned from Addison would save your little man. When I found out that he had passed, I felt like I had lost Addison all over again. I really love you guys and know that I am here for you.

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  7. I am so so very sorry to read this. My heart is just breaking for you guys. I just don't have the words to say. Even though I lost my own cherub too and have known 100's of families who have lost their cherubs... there are just never enough words to say or the right words to say to take away your pain and bring your son back into your arms. I am continuing to pray for you and you are in my thoughts. If I, or CHERUBS, can do anything at all... we are here. I am so sorry Kristi and Craig. (((((((((((((((((hugs)))))))))))))))))))

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  8. Still praying. My heart is heavy....I am sure my heavy heart is nothing in comparison to what your family is going through.

    ---------------------------------
    Why God Takes Little Children

    When God calls little children
    to dwell with Him above,
    We mortals sometimes question
    the wisdom of His love.

    For no heartache compares with,
    the death of one small child.
    Who does so much to make our world,
    seem so wonderful and mild.

    Perhaps God tires of calling
    the aged to His fold.
    So He picks a rosebud
    before it can grow old.

    God knows how much we need them,
    and so He takes but few.
    To make the land of heaven
    more beautiful to view.

    Believing this is difficult
    still somehow we must try.
    The saddest word mankind knows
    will always be Good-bye.

    So when a little child departs,
    we who are left behind,
    Must realize God loves children.
    ANGELS ARE HARD TO FIND!

    ---------------------------------

    Will continue to pray.
    TWW Member former Oct 08 mom

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  9. Kristi and Craig,

    My heart breaks for you and your family during this most difficult time. As someone who is about to be in the CDH journey, I am afraid of what lies ahead... I know we have to fight to find a cure for the CDH monster! I wrote to OPRAH too a couple months ago.. I hope she will listen to ALL the voices who have lost their battle and families who have suffered and continue to suffer thru it.
    I am happy that u had the chance to see your precious Kaden's eyes before he became an ANGEL! It is gift you will not forget!
    YOU are all in my heart!

    With great admiration,
    Joanna(CHERUBS)

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  10. Kristi. I will be here for you whenever you need me. My email is ashleynaye@aol.com if you would like to email me. It is so hard to remain strong throughout all of this. Not a day minute goes by that I don't think of Max and Kaden and all the other CDH babies. I am so angry that they were not taken- not angry at God, but just simply angry! Let me know when you are ready to talk and I will be there for you. It definately helped me to meet with Marion. I love you guys and am thinking of you. If Jessica needs someone to talk to, I am here for her as well.
    Much love!
    Ashley

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  11. I have been following your story because my very close friend gave birth to a baby girl on March 24th 8 weeks premature with CDH. I had not heard of this until she told me about it and I started researching it to be more educated about it and it broke my heart when I found out how many babies are affected by this. Your story brings tears to my eyes because there is no love like the love parents have for their children. Thank you for sharing your journey and I want you both to know that I will be keeping your family in my thoughts and prayers.

    With a heavy heart,
    Tricia

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  12. I love you and can't stop thinking of you.

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  13. I am a NICU nurse at Vanderbilt Childrens in Nashville and found your blog through the Tuleys. I have been following it the past couple weeks and I am so sorry for your loss. CDH is a devastating defect and I hope through Kaden's story you can reach people and inform them. It is obvious that during his short life, he touched many lives. My thoughts and prayers are with you.

    Beth Hutcheson, RN

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  14. Kristi and Craig,

    I love it that Kaden opened his eyes while you were talking to him about Heaven. I know that will be a memory you will treasure forever in your hearts. I think of y'all every second of every day. It sounds like you have such a large group of supportive family and friends. I know that must be heart warming as well.

    Sending you love and hugs,
    Stephanie

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  15. Oh Kristi and Craig,
    We were both crying when we read that Kaden had lost his battle with CDH. You and your precious little Kaden have touched our lives so much and we were hoping that he could join your wonderful family. Even though we are miles away, we are thinking about you during this difficult time.
    Hugs,
    Ingrid, Alex & Alina

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  16. I'm continuing to keep you guys in my prayers.

    Bethany

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  17. I have been heartsick and fighting off tears all day thinking about Kaden. Thank you so much for being transparent and sharing the photos of your most sacred moments with Kaden. He is absolutely a gorgeous little fellow. It continues to amaze me as I read all of the comments how much of an impact Kaden made on this Earth in such a short time...an impact even on the lives of random people like me who have never even met your family! Some people live their whole lives without fulfilling their purpose on this Earth...or flit away their life just to make an impact toward the end of their life. Kaden made a huge impact in only 17 days...amazing. He has touched my life personally by being an example of being such a little fighter, and he has made me think so much about this life...putting things in perspective and reorganizing priorities. Kaden has made me realize nothing on this Earth matters...Earthly gain, possessions, etc...it's all about God's Kingdom and His purpose for us on this Earth. Not that it makes things easier, but just wanted you to be encouraged that Kaden's 17 days had more impact than some people's whole lives. (Plus, I had no idea what CDH was before stumbling on Kaden't blog...you made me aware...thank you.) I'm praying for peace for you Craig and Kristi.

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  18. craig and kristi i have to say the picture of kaden with his eye open made my day. i had actually thought earlier that i really wish he could have opened his eye to see his wonderful parents only to come on here and discover that he did. what a precious and sweet moment. i am so glad that God gave you that moment of eye contact with your adorable baby boy. kaden has stolen many hearts in his time here on earth. your faith has touched many lives. your strength and love are examples to all. it's okay to be angry. God understands our anger. He created us with that emotion.

    we all hate cdh. i never knew this horrible birth defect existed until 'meeting' you two and kaden. watching you face this struggle has been so difficult. so many times i've wished that i could just reassure you by reaching through here and giving you a hug. i asked my husband last night why babies had to face such trials? someone so innocent. so pure. i knew the answer before he said it. sin is so ugly and this is what it brought into our world. pain and suffering. i wish that your family had not had to face this pain though. it seems unbearable. and so unfair. this pain and the tears that i have shed for you do remind me of one thing....we are all connected. i'm so glad to have had the privilege of praying for kaden and for your family. my husband and i will keep praying for you all and loving on you from from the other side of the US. you are in our thoughts and prayers.

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  19. I received this message from a fellow teacher when I was letting everyone know the sad news about Kaden:

    As the parent of a child that died 31 years ago of SIDS my heart goes out to anyone that is traveling this road. We also let our little son "go" vs let his body die slowly. We have never regretted the decision. I hope Kaden's parents know how right their decision was. Please know that even though I do not know the parents I am very, very sorry for their loss.

    She gave me permission to post her words here.

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  20. Craig, Kristi, Jessica, Christopher, and Logan, I am praying for you all!

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  21. I'm so glad you got to gaze into Kaden's eyes. I wish I had the chance to see my daugther's, I can only dream about what color they were.

    I can't believe that NOBODY has ever heard of CDH unless it touches their lives when it is one of the most common birth defects. I hope something comes through w/Oprah, I can't think of a better way to get the word out. You guys are great people and will do great things in the midst of this tragedy.

    ~Lisa (mommy to angel Ava)
    www.caringbridge.org/visit/avarosedaher

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