One Month Since Kaden's Death

Tomorrow it will be one month since Kaden grew his wings. As I said before, I come to the blog almost everyday and try to post, but when I try to gather my thoughts I get really sad again. These days I am just trying my best not to be sad all the time. I have a wonderful husband and 3 other, great, kids that I need to be here for. Don't get me wrong, some days it is really tough just to be functioning, but I can tell Logan, especially, is really tuned into how I am feeling. I think it scares him when I am sad so I do my best to be "normal". It seems like so much longer than a month. I really miss having Kaden in my tummy--moving around--all safe and sound. It was just me & him most of the time during my pregnancy and I would talk to him alot about what I wanted for him and had planned for him. Now I will never really know him. I wonder all the time whose personality he would have had, what he would have looked like (especially since I really only remember what he looked like swollen),how close him & Logan would have been, how much Jessica & Christopher would have spoiled him rotten (just like Logan). I think those thoughts are what pains me the most. I pray that some day soon I will be able to look at his picture and have it not make me cry. I sure do love him and in some sense am afraid that life will go on and he will fade from my memory and I will have to look at his picture to remember. Does that make sense?

I had my 6 week check-up with my regular OBGYN yesterday. I actually don't even remember making the appointment, but got the reminder call on Saturday about it. I was sick thinking about going and on Sunday night I lost it. I came on to the blog and re-read our journey and cried hysterically. I did not expect that we were going to get the outcome that we did. But we did. So now I have to find the strength to move on. Dr. Snook, my OB, was great to me yesterday. He talked to both Craig & I and discussed the grieving process as well as some local support groups. I got a clean bill of health, and he said we could start trying again in July if we felt we were ready. I know July seems really soon, but since we will have to go back to the fertility clinic, I was actually extremely happy that we weren't going to have to wait 6 months to a year for my c-section to heal. I hope at least some of you can understand that I want a baby with Craig so bad. Kaden was that for me. And after trying for over 3 years to get him and me being 38, I know our chances of having a baby that we get to bring home get less and less the longer we wait. If God chooses to bless us again, with another child, it will never replace Kaden and what he means to me (or any of us). So keep us in your prayers for that, too.

I want to say thank you again to everyone for their continued support. I know sometimes it is hard to know what to say. And if for some reason I am not answering your phone calls or immediately returning your emails, it is because when I have to talk about how I am doing it still upsets me. No matter what I am doing, I am immediately having to think about Kaden and my feelings. So for now, just bear with me and know that I know that everyone is concerned and I love you for it! Also, I do still read and check up on all of you. Even though I may not leave a comment, I am still praying for you all and your little ones.

One Month Ago Today

I know everyone has been wondering how we are doing. I have come to the blog many times to post, and then just couldn't do it. Overall we are doing okay, but it is taking everything I have some days not to just stay in bed and be sad. Kaden would be one month old today, and it seems like so long since I saw him. I miss him so bad and would give anything to have him here. I know you all understand. Our friends have been great keeping us busy and supporting us. I just know when Craig goes back to work on the 12th, and I am alone again, I will have to start dealing with my deep sadness. Sometimes I wish I could put everything out of my mind and get some peace, but everything reminds me of Kaden. It is so hard to understand why this happened to us, or any of us. Those of us who have lost babies to CDH--we all would have been great parents. I don't know why that opportunity was taken from us. It is hard not to get mad--I just want my son.

I have been keeping up on everyone's blogs. I haven't been posting, but I am thinking of you all and praying for you and your little one's on this journey. No one should have to go thru this...

Kaden's Funeral Service- Beautiful!!!

Kaden's Funeral Service was yesterday...it was so beautiful. Kristi and I are so happy with the turnout. Once again, there was such a show of support and love for Kaden and our family.

About 5:30 PM, our family was escorted by CHP motorcycles from our house to the Funeral home. The whole motor squad from my office volunteered to escort us on their own time. We felt very honored that they wanted to do that for us. We arrived at the Funeral home and immediately sat in the family area in the Chapel. Around 6 PM, the service started. Chaplin Rick Stonestreet conducted the service for Kaden. It was a beautiful service which touched each and every person in the Chapel. I would estimate between 175-200 people attended the service....standing room only! Our good friend Naomie Pruitt read a letter prepared by Kristi thanking everybody for their support and trying to raise awareness for CDH. Naomie did a great job and we appreciate it. After the service, we were escorted back to the house by the CHP motors to celebrate Kaden's life. I would estimate about 100 people came to the house for the celebration. We had a ton of food and drink that was provided by several family and friends. It was so nice to see so many of our friends that we had not seen in quite a while. We ate and drank until around 1:00 AM celebrating Kaden's life and enjoying the company of our family and friends.



It's looking like we will have a good amount of donations in Kaden's name to give to the "Nayeli Faith Foundation". There were a lot of people yesterday that were educated about CDH. I'm sure that they will pass on that knowledge that they gained from Kaden's journey. Please continue to keep those donations coming for the "Nayeli Faith Foundation" or any other CDH support group.






BELOW IS A PICTURE OF A LAMINATED CARD WITH KADEN'S INFO ON IT. WE RELEASED ABOUT 75BALLOONS WITH THESE CARDS ATTACHED FOR PEOPLE TO SEE AND TO RAISE AWARENESS FOR CDH WHEREVER THESE BALLOONS LAND.

A BIG surprise from my TWW girls!

Before I got pregnant, and while we were trying, I found a website called "The Two Week Wait". I would chat with other women, like me who were trying to concieve. Then, when you get pregnant, you move over to the "pregnancy boards" and they group you into your "due date month". Well, I was obviously an April mommy, and there I found friends, and support thru my whole pregnancy. They were really there for me when we found out that Kaden had CDH, and always had plenty of prayers and kind words for Craig & I. I haven't really gone to the board for about a week, until today and one of my friends, Sarah, set up a link for the girls to be able to make a donation on-line that will go to the Nayeli Faith Foundation. Here is the link:

http://www.fundable.com/groupactions/groupaction.2009-04-22.9076975617/

Craig and I continue to be so touched and in awe of the support we have gotten from all our friends and family as well as complete strangers. We are beginning to realize what Kaden's purpose was--we know he has touched so many of you and brought awareness to CDH. Craig and I are committed to raising awareness so that research can be done and more babies born with CDH will go home with their families where they belong.

Services for Kaden Alex Kuehl

Services for Kaden Alex Kuehl will be on Friday, April 24, 2009 at 6:00 P.M.- At

Bryan-Braker Funeral Home
1850 West Texas Street
Fairfield, California 94533
(707)425-4697
www.bryanbraker.com

We will be having a get together at our home after the funeral services to celebrate Kaden's life. All are welcome that would like to attend. We will have some food and beverages at the house. Our address is:

1815 Kolob Drive
Fairfield, Ca. 94534

In lieu of flowers, we are asking for donations in Kaden's name to the "Nayeli Faith Foundation". The "Nayeli Faith Foundation" was started by Shane and Liz Nelson who's daughter Nayeli, a survivor, was born with LCDH at UCSF. The foundation assists parents and children with CDH at UCSF. Shane and Liz started this foundation because they know first hand the costs associated with being at the hospital for extended periods of time.

Checks can be mailed to:

SLPOA C/O "Nayeli Faith Foundation"
901 E. 14th St.
San Leandro, Ca. 94577

Put in MEMO section: In memory of Kaden Kuehl

We thank you all so much and look forward to seeing you at the service and gathering at our home after the service.

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.

Kaden has lost his battle with CDH

KADEN ALEX KUEHL---APRIL 3RD, 2009 - APRIL 20TH, 2009. WE WILL ALWAYS LOVE YOU!!!



Kaden Alex Kuehl has passed on and went with God to be with the Angels this evening at around 6 PM. He lost his battle with CDH after a hard 17 day fight. Kaden went peacefully in his mommy and daddy's arms.

This morning when Kristi and I got up to go to see Kaden, we entered the NICU and saw that Kaden's stat's were not well. He was down it the 50's for his upper O2 levels, and low 30's for his lower O2 levels. He was still on the osilating ventilator with high settings. They had tried to lower his O2 setting down to 70 overnight. Kaden was not having it! When the doctors came around and saw that Kaden was still stating low, they put his O2 setting back up to 80 percent. That got his O2 levels back up to around the high 70's, but he was still splitting by about 30 between his upper and lower O2 levels. We were very worried right off the bat. One of the doctors came in and told us that we needed to have a family meeting. We knew that this was not good.

Kristi and I went into the meeting with our hearts in our throats. We were both having major bad feelings walking in there. We sat down with the doctors and then it came. The doctors told us that they had come to the point where they had nothing else to assist Kaden. They told us that Kaden was so sick that he was not going to live. They said that Kaden was at the very highest level of support, and that they had never had a CDH baby on that level of support for this long period of time that had survivied. They gave Kaden a ZERO percent chance of survival. Prior to having this meeting with us, one of the surgeons came by to check on Kaden's status. The surgeon said that even if we decided to have the surgery done, he would have a very minimal chance of being able to recover from the surgery. The doctors said that Kaden's functioning lung was just too small to make his body work right. Even if we did get the surgery done, and Kaden was to survive it, he would still be on maximum support and would die when we took him off support. We had to make a decision.....take Kaden off support and let him pass peacefully with us, or he could die from an infection or heart failure due to his little body working too hard. This was the hardest decision Kristi and I have ever had to make. This was the hardest thing both of us have ever had to deal with. We love Kaden so much and have always thought positive thoughts for him, but as I told the doctors in our meeting...you don't have to be a doctor to see that amount of support that Kaden is on and how sick he is. Kristi and I can both see everytime they try to bring the support level down just a little bit, Kaden does not like it. His stats immediately dropped and he cannot recover until they brought the support back up. Like I said.....this was the hardest decision of our lives. We did not want to prolong the pain that Kaden was going through. He got the best treatment possible....he just didn't have enough lung!

Kristi and I both got to hold Kaden in our arms for the first time this late afternoon. They gave us a private room so that we could be with Kaden alone for the first time. Kaden passes peacefully and without any pain with his mommy and daddy. This was a sad time...we wanted so much for Kaden to beat CDH and come home with us, it just wasn't meant to be. God has another purpose for our son Kaden. Kristi and I were both happy to be able to spend these 17 days with Kaden. I thank God that he did not take Kaden the night of his birthday and gave us these 17 days to spend with him. I will never forget those 17 days.

After Kaden passed, we got to give him his first bath, get him all cleaned up, and take some photos. Kaden got to be held by his loved ones before we left the hospital.

We are now at home and are very sad, tired, mad, and just about every other emotion you can feel. We really don't know what to think or feel.....I feel like we are in a nightmare. That's about all I can handle for tonight. I just thought it was fair to let everybody know that Kaden is in Heaven with his CDH friends, and family. Every night after I prayed to God for Kaden to get well and overcome this CDH, I also talked to Kaden's Great Grandma and Grandpa Dieterle who are both in Heaven and asked them to take care of Kaden until mommy and daddy get up there to be with him. I have a good feeling that Kaden is with grandma and grandpa right now.

Kristi and I will be starting to arrange services for Kaden tomorrow. We are very tired and can't really think straight right now. We will let everybody know what's going on with another post tomorrow.

As for Kaden's Grandma Debbie and Grandpa Bobbie who are on a cruise in the Carribean....I'm so sorry. We are so saddened by Kaden's passing and we know that you will also be. Kaden is in a better place now and he is not suffering. I don't want you guys to have your cruise spoiled due to Kaden's passing. We both knew that it was a possiblilty when you left yesterday that Kaden might have a hard time....well it did happen. We love you all and know that you are here with us in your hearts. Please try and enjoy your cruise. I will try to get an emergency message to you tomorrow. We love you!

Thank you everybody for all your thoughts and prayers for Kaden and his family.