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.

Kaden and his sidekick

THIS IS KRISTI'S POSITION WHILE WE ARE IN THE NICU. SHE HOVERS OVER KADEN ALL DAY LONG PRAYING FOR MORE PEE PEE!!!




Another great day for Kaden. He continued to have good stats pretty much all day long. His pee has slowed down, but he is still getting rid of some of the fluids. We got to the NICU at around 8:30 am and Kaden's stats had stayed the same all night long. Kristi and I sat by his bedside most of the day giving him prep talks and telling him how much we love him. I was singing lots of daddy songs (songs that I just make up as I sing them) which Kaden loves. His stats always seem to go up by a few points every time I talk to him or sing to him. Today, Kaden was trying soooo hard to open up his right eye, but is still unable to due to the swelling. We cannot wait to see him open his eye. They have weened his blood pressure medication down from 20 to 4 today. After spending the entire day next to Kaden, we had mad plans to go out to dinner with Tim and Hayley Murphy (Baby Collins parents). We went out and had a nice relaxing dinner. After dinner, we came back to the hospital for about another hour. Kaden was still doing well and we decided to head back to our hotel about 9 PM. It was very hot today is San Francisco, which means that it's hot inside the hospital and our hotel room. We were sweating in the NICU because it was so hot. Now that we are back at our hotel, it is still hot and we have all of our windows open. We look forward to trying to get some sleep tonight. Last night was pretty much the same deal with our hotel room.....planes, trains, and automobiles.....ALL NIGHT LONG!!! We are tired and ready for a good night sleep.


BELOW IS A PICTURE OF BABY COLLIN A FEW DAYS AGO. COLLIN HAS HIS C-PAP AND BINKY IN. LOOKS LIKE A CDH SUPERHERO!!!!







BELOW IS A PICTURE OF BEAUTIFUL BABY COLLIN TONIGHT AFTER WE CAME BACK FROM DINNER WITH TIM AND HAYLEY. COLLIN NO LONGER HAS HIS C-PAP, HE IS NOW ON A NASAL CANNULA. YOU CAN ALSO SEE HIS LITTLE CDH SCAR. WHAT A LITTLE WARRIOR!!!!!

Another stable day for Kaden

A PROUD MOMMY AND DADDY OF THEIR LITTLE KADEN! HE IS FIGHTING SO HARD AND WILL CONTINUE TO DO SO.

Sorry it has taken so long to update Kaden's blog. We have been gone from our hotel room all day long and didn't bring our computer. We got up this morning at around 9AM after a night of practically no sleep. If you have seen planes, trains, and automobiles, then you might understand how our night at the hotel was. Pretty much about every 15 minutes, the Muni train rolls by right outside of our hotel room window. This shakes the whole building when it goes by. If the train doesn't stop right outside our window due to nobody wanting to stop on the train, or nobody waiting at the train stop, then it roar by at about 40 MPH honking it's horn and ringing it's bells. EVERY 15 MINUTES.....ALL NIGHT LONG!!!! Oh, and did I forget that the Fire station is right up the street too. Firetruck with screaming sirens and horns also....ALL NIGHT LONG. We have never lived in a big city, and now I know that it will never happen. Anyways, enough complaining about our hotel room experience and back to Kaden.

Our little Kaden had another great night!!! He continues to keep his stats good and is still peeing off the excess fluid. The doctors are still very happy with Kaden's progress. As for his surgery, it's still a day by day decision. They want to make sure that Kaden is strong enough to survive/recover from the surgery. Our friends Chris and Anne came to visit Kaden today. They brought Kaden an ANGEL OF MIRACLES that they had blessed at the church in the city. They were very happy to meet him and are looking forward to him getting better and coming home! We also met up with Auntie Megan this evening and went to dinner with her. After dinner, we stopped back by the hospital to see Kaden before returning to our hotel to relax and try to get some sleep tonight.

Please continue the prayers as we all know that it is really helping Kaden as well as Kristi and I. Thank you all and we will post Kaden's progress tomorrow.