Saturday, April 25, 2009

Kaden's Funeral Service- Beautiful!!!

Kaden's Funeral Service was 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.


Thursday, April 23, 2009

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:

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.

Wednesday, April 22, 2009

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

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.

Tuesday, April 21, 2009

Back home


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 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.

Monday, April 20, 2009

Kaden has lost his battle with CDH


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 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.

Sunday, April 19, 2009

Kaden and his sidekick


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.



Saturday, April 18, 2009

Another stable day for Kaden


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.

Friday, April 17, 2009

Keep it up Kaden


Kaden has had another good day. No changes from earlier today. He continues to keep his stats at a stable level, and he is still getting rid of lots of fluid. Kristi and I left Kaden around 6:00PM and have just checked into our hotel. We are so tired of having to lug all of our stuff around. We feel like a couple of gypsies moving from one place to another. But, Kaden is well worth it, and it's a must to be close to him during these times. Not much more to report today. Hope that he just keeps up his stats and keeps losing fluids over the weekend. We will post another update tomorrow unless things change between now and then. Keep up the prayers please.


Happy 2 Week Birthday, Kaden!

It's Mommy, here. Craig kinda "took over" the blog for the past few days because he does such a great job (it has to be therapeutic) and some days I am just to much of a mess to relay all the information. Today is actually my official "due date". We are SO PROUD of our little man. He is fighting so hard to beat this CDH monster! His stats remain "stable" (upper in the low 90's and lower in the mid 80's)and the best news of all....drumroll, please....he has pee'd off 500mls, yes 500cc's, of fluid in 24 hours!!! The doctor's (I think) are in SHOCK! We just left rounds, and it sounds like they are going to "take it day by day" to decide when to do his surgery. We were shooting for Monday, but they decided today that he may be ready by Sunday. The other good news is that his labs look great, meaning that the fluid he is getting off is coming from all the vascular tissue (which is where it needs to) and not depleting his nourishment. The good news for us is that he seems to be shrinking before our eyes. He even has half of his face back (If that makes any sense) They can get his eyes open again to get the artificial tears in--something they haven't been able to do for over a week. We are so excited about the babysteps in the right direction. In a situation like Kadens, you really learn to take the good moments and enjoy them.

I have to say, I am a little nervous about the surgery. It scares me to think that he is going to need so much to overcome the recovery. But it is a milestone that we need to reach. I feel like I do nothing but pray all day for God to give us a miracle and to have mercy on us. We know everyone has been praying for Kaden, and PLEASE, PLEASE don't stop. (I normally don't like to beg.....) We know this is why he is holding steady and making progress. We just love him so much and being with him all day is such a joy. Sometimes I feel like my heart is going to burst!

This is all for now. I am sure Craig will update during the day as things progress. We love you all and cannot thank you enough for the love and support you have shown us.

Please continue to pray for Lindsay and baby Jon (born on Monday) in MN. He is stable and doing well--she said that they were going to try and do his repair early next week. Also, baby Jaime and Sheryl. We are anxiously awaiting an update, but at last post, he was holding steady and doing well. And last, but definitely not least, Baby Ruby, who is currently on ECMO @ CHOP. Sounds like she is doing well. Just know we are thinking of you all and praying for our CDH FIGHTERS! We love you all....

Thursday, April 16, 2009

Goodnight Kaden


We just let Kaden's bedside so that he can rest tonight. He is still doing absolutely GREAT!!! His numbers are still in the low 90's with splits to lower body in the 80's. He is still peeing 4X the normal amount. We decided to let him have a nice quiet night. We have been trying not to bother him much today due to his stats being so good. We all figured out that the more paralysed he is, the better his stats are. So we have been trying to to touch him too much today, just talk to him and tell him what a great job he is doing and how much we love him.

Today, Kristi got to wash all the goobers out of his hair and comb it out. It looks so good. His hair is so long and beautiful. He is losing so much of his excess fluid. I love him so much!! I can't wait to see him move around some more, bit it's well worth the sacrifice to have him not moving as long as he is improving. They moved his O2 settings down to 80 and plan on moving it down some more tonight. Keep the prayers coming. We plan on trying to get some well needed rest tonight! Talk to you all tomorrow.

Kaden's Day

Well, we have had a great day. So far today, Kaden has kept his stats looking very good, and he is still peeing A LOT! We love it!!! The doctor says he is still peeing about 4 times of normal and that he must be trying to make up for lost time. I think it's all about the prayers that God has heard about making Kaden go pee so much. Plus, I think Kaden is trying to make the doctors go crazy. The doctors totally switch around their statements each day. It's unbelievable that yesterday they were saying that they were about at the end of what they could do to treat Kaden, then today they say...WOW, he's doing great compared to yesterday. The surgeon came in today to check on Kaden. He said that if Kaden continues to keep his stats up where they are today, and he continues to pee, they would look into doing his surgery on Monday. What a difference a day makes.

Grandma Mary, Grandma Debbie, and brother Logan came to see Kaden this afternoon. Logan got to finally go in and see Kaden today. He has not seen him since the day he was born. I think Logan did very well in the NICU. I held him up and he talked to his brother Kaden telling him that he loves him and to get better so that he can come home. It was a really good visit. Grandma Debbie will be leaving on Friday for a cruise to the Caribbean Islands that she has had planned for over a year now. I think it's a 10 day cruise and she is very worried about being away. I told her not to worry about anything and that by the time she got back from her cruise, Kaden would be just about recovered from his surgery. DON'T WORRY GRANDMA....HAVE FUN ON YOUR CRUISE. JUST CONTINUE TO THINK POSITIVE THOUGHTS. GOD CAN STILL HEAR YOUR PRAYERS EVEN IF YOU ARE IN THE CARIBBEAN ISLANDS:)

We were told today that we needed to be out of our room by tomorrow. They need the room for the weekend due to large amounts of people coming in for deliveries over the weekends. So, I booked us a room at the Carl Hotel which is the one we stayed at last weekend. It's within walking distance from UCSF (.4 miles). We still need to be close to Kaden. Yeah, he's having a good day today, but we all know how things can change from day to day. We are still spending pretty much all day everyday by his bedside, so we basically just need a place to shower and sleep. We have been here at the hospital now for 15 days now. It is so expensive here in San Francisco. I think we are averaging $50 a day for food (lunch/dinner only for Kristi and I). Now that we are being kicked out of the hospital, the hotel bills will start to add up. Carl Hotel gave us the discounted hosptial rate of $89.99 plus tax, so basically $100 a night. That will get very expensive over time.

I got a message from my job today telling me that they are going to get some kind of financial aid to assist us with the costs of being here at UCSF for such a long period of time. Anything will help, so I am really greatful they contacted me.

I'm going back in with Kaden now, so I will update again later. Just wanted to let everybody know that Kaden's day has continued to be good. I will post again later on tonight.


Good night

Just wanted to let everybody know that Kaden had a good night last night. Now that he's is back on the high osilating ventilator, he was stating in the low 90's all night long with splits of around mid 70's for his lower body. He has also been peeing like a race horse all night as well as this morning. The doctor said that he's catching up for lost time. I can almost see the fluid melting off his body. I'm going to get back to Kaden now...just wanted to give everybody a quick update.

Wednesday, April 15, 2009

Kaden update

Kaden is back on the high osilating ventilator. He was having problems keeping his CO2 levels down on the regular ventilator. The doctor made the decision that it would be better to go ahead and put him back on the osilating ventilator to keep his CO2 levels down. They have been doing a lot of lung treatments, hand ventilation, and suctioning of his lung. Pretty much every time they do a hand ventilation and suction, his stats skyrocket up to the mid-high 90's, and his CO2 levels drop. Kristi and I both said that we would stand there next to Kaden all day and all night long doing hand ventilations if it would help. Kaden likes it....the only problem is that they can't get any of the machines to mimic the hand ventilations. So frustrating!! Everytime they suction his lung, they get lots of white/clear thick mucas. No wonder he can't keep his stats up....If I had that stuff in my lungs, I wouldn't be able to breath either! I know they are trying hard, and a majority of them really care about Kaden. Lots of them downright LOVE him. Anyways, we are still worried, but not giving up hope. I talked again to one of the doctors that has really bonded with Kaden about his situation. I asked her if everything keeps going in the right direction, and as long as his stats stay somewhat decent, will they still consider doing the surgery to correct his hernia? She said absolutely. I asked her if it would help Kaden once the surgery is completed, and she said not exactly. She said that it would be a milestone, and it could help in some ways, but it would not be the cureall to help his right lung. I just figured that if they could get the surgery done, then they would have a chance to see what kind of lung and how much of any lung is functioning on the left side. I thought....well, maybe if they get the surgery done, they can get his left lung to start working to help out the right lung. I guess it's just me trying to have positive thoughts. I try to turn everything into a positive situation. The earlier "Family Meeting"....Ive already tried to put that in the back of my head. It just stresses me out more to have to think about the negatives. I don't understand why they have to be so negative all the time. Anyways, I seem to be rambling on, but I'm probably just trying to vent. Kristi is still sitting in with Kaden next to his isolet. I just wanted to come out and post another update before it gets too late. I'll be heading back in to hand out with Kaden and my beautiful wife as soon as I'm done here.

Keep the good thoughts and prayers coming. I just pray that Kaden has a good night, and stays that way until he can be strong enough to get his surgery. Talk to you all tomorrow:)

Below is a picture of Kristi with Logan from around April 4th. She had a headache, so the nurse gave her an icepack bandana. She is probably gonna kill me for this:) But she will still LOVE ME!

"Family meeting"--Not so good

We got together with the doctors, one nurse, and our social worker this afternoon to discuss Kaden's progress. It went TERRIBLE!!! The doctors are telling us that they are at about the end of their rope as to what they can do for Kaden. They said that they have pretty much done everything they can to get Kaden better, and that he is not responding well to anything. His stats have been all over the board all day long since they changed over to the different ventilator. His stats go up, then go down...they hand ventilate him and his stats go up, then they go back down. His O2 split and CO2 level is what is causing them the most concern. He also is not putting our enough pee to get the fluids off. He is stating right now with upper O2 levels around the mid 70's and lower O2 levels in the high 30's....NOT GOOD. His CO2levels flucuate depending on what they are doing to him, but overall, they are pretty high. One of the medications Kaden is on is called FLOLAN. It's a VERY powerful drug used to open up the blood vessels through out the body. They are getting to so high of a level, that they are worried that it will cause Kaden to start having problems with his heart. They told us that if things don't improve in a few days with all they are doing, they have nothing else to try. They are not saying that he has zero chance of survival, but it's getting close and that they would tell us when they get to their last efforts before they can't do anymore. It really makes me sick to my stomach.

Kristi and told them that we are not giving up on Kaden. We understand and can see that he is not doing well at times, and they are working very hard to help Kaden, but we will keep on going to see if he can improve and pull through this. I will update later tonight to let you all know how Kaden is doing. Right now.....Kristi and I are a mess!

Mid-day update on Kaden

KADEN surrounded by his tower of medications. He has six different medication pumps right now.

Just wanted to give everybody a quick mid-day update on how Kaden is doing. This morning when we went to see Kaden, his stats were kinda low, but he was starting to go pee pee. The doctors were saying that his early morning X-ray showed that his right lung was open up just about all the way and they thought that the high osilating ventilator was too much. So about an hour and a half ago, they took him off the high osilating ventilator and put him on a standard ventilator. He is doing very well on the standard ventilator so far. He is still putting our quite a bit of pee too. We will have a family meeting with the doctors at 5PM to discuss what has been going on with his progress, and what the plan is for his future treatment. I heard the doctors during rounds this morning talking about possibly doing Kaden's surgery on Monday if he continues to get rid of the excess fluids and his stats stay good. Keep your fingers crossed and keep on praying!! I will update again later tonight, but just wanted to let everybody know that Kaden is having a pretty good day.

Tuesday, April 14, 2009

Kaden holding his own

Pictues above is Kaden's prayer bear. Prayer bear is wearing The Lords Prayer cross that was sent to Kaden by Papa and Nahnee.

Not a whole lot of change with Kaden. He has now been off ECMO for over 24 hours and is doing well. His O2 stats have been hovering around the mid 80's all day long. He is still pooping good, (averages a poop or two a day) which is good! That means that his insides are working well even though they are mostly up in the left side of his chest. Kaden is still pretty swollen. He is not peeing a lot like we need him to. It's not out of the ordinary for babies coming off ECMO not to pee a whole lot after the big change to their bodies. The nurses and doctors said that they are pretty much in shock for a day or two after coming off ECMO. I'm just really glad that he is doing well for his stats. Kaden has had a few small pee's today, but not quite enough to make us more comfortable. I am confident that he will start peeing a whole lot more tomorrow. We spent the whole day with Kaden by his bedside until dinner. Grandma Mary, Jacqeline, sister Jessica, and Gabby (Jacqeline's daughter) came to visit. We all went to dinner and then, they came see Kaden. Everybody was very happy to see Kaden. They all said that he looks really good. Even Jessica was able to come in and see her baby brother. Jessica did a lot better today coming in to see Kaden. Kristi and I were both very happy she came in to see Kaden. She even touched his little foot. Overall, a pretty good day. Not much more to report. Keep the prayers coming, because they are working. Once again, Kristi and I thank everybody for their support. We are still in the hospital. Our social worker said that she would keep us in the hospital until Kaden get's more stable. Will update again tomorrow.....hopefully with more good news:)

Monday, April 13, 2009

Kaden is off ECMO

Mr. KADEN ALEX KUEHL---Canula Free

Wow...what a stressfull two days. This morning we checked out of our hotel room and hurried to the hospital to see how Kaden was doing. Today was the big day....coming off ECMO. When we arrived, Kaden's stats were not doing so well. I went over to Kaden's bedside and told him how much his daddy and mommy love him, and how much so many other people love him and are praying for him to do well today. I told Kaden to be strong and that he could get though this day. I told him that daddy was sooo proud of him.

We sat around in the NICU all morning. They began to trail Kaden off ECMO at around 10:30am. He seemed to do very well, so we made the decision to get Kaden off the "Bloody Beast". The surgeons had a very busy day and scheduled Kaden to get his surgery at around 4:00pm to get that nasty canula out of his neck. Kaden was stable, so we took an hour to go downstairs and get some lunch.

We had lunch with Tim and Hayley Murphy (Baby Collins parents). Baby Collin is doing very well and was able to get his breathing tube out today. He is doing well on a nasal C-pap. Thank God that Collin is doing so well. Tim and Hayley have really been great support for us as well since they have been here everyday with Collin.

After lunch, we went back to sitting by Kaden's side until his surgery. I prayed and prayed for Kaden to do well today and beat this CDH. Today is the first day in my life that I have ever begged God for anything. I begged that God give Kaden the strength to pull through this, get well, and come home to his family that loves him. I begged God not to take my son from me. I think my begging, as well as prayers from all over the world to help Kaden through this really worked today.

The surgeons came in at around 4:00pm and began Kaden's surgery. After about an hour, one of the nurses came out and told us that everything was going great! Kristi and I were so happy. We went in to see Kaden around 5:30pm. He looked great. It was so nice to see Kaden without that nasty canula sticking out of his neck. The nurses had cleaned up Kaden's hair as much as possible which we really appreciated. Kaden is on a high osilating ventilator at around 75-80% oxygen. His numbers were not too bad for just coming off ECMO. His O2 levels were sitting around 80-85 upper, and 65-75 lower. Not the best, but we will take it. They say that it takes a little time for his body to adjust from the bi change from ECMO to ventilator. His numbers will be fluctuating for a while, but the Doctors were very happy by Kaden's success.

They did an X-ray of Kaden's chest to see how his right lung was holding up. The X-ray looked great!! They said that it looks like a majority of his right lung is open, and it is a pretty good size (down to about the 9th rib).

We will continue to keep a close eye on Kaden tonight. The hospital gave us a room on the 15th floor very close to Kaden. I just wanted to come into our room and update the blog during shift change, because I know that so many people are praying for Kaden today. God is hearing the prayers, so please keep them coming. They are working wonders for Kaden. He has came off ECMO successfully, but still has many hurdles to overcome in the days ahead. If there are any changes, I will let you all know. I might even post again just to update everybody later tonight since I'm sure we will be up late.

Thanks again and talk to you later!

Sunday, April 12, 2009

Kaden still on ECMO--Not a good day


Today has not been a good day. Kristi and I went to the NICU this morning around 9am. Kaden's stats were pretty low when we arrived. His blood pressure was really low and his O2 levels were in the high 70's low 80's. Not a good start for the day he's gonna be trialing off ECMO. The doctors also said that it looked like the X-ray of his right lung was not open as much as it was yesterday. They think that his stats went down because they were too aggressive trying to get the fluids off. They had to give Kaden platelettes this morning to bring his stats back up. Around 11:30 am, they tried to trial Kaden off ECMO. For the first 15 minutes, things looked GREAT. His O2 levels were in the high 90's, but as more time passes by, his stats dropped quickly. His CO2 level was sky high (in the low 100's). His O2 level for his upper body was reading in the low 70's, and low 40's in his lower body. They had to put him back on the ECMO circuit after about 45 minutes. During the time he was off the ECMO circuit, they tried both regular ventilator and high oscillating ventilator...neither worked.

Around 2:15pm, Doctor Keller came in to oversee another trial off ECMO to see excactly what was going on. So once again, they turned off the flows to the ECMO circuit...once again, Kaden's stats were great. But after about 20-30 minutes, the same thing happend. His stats dropped down, and his CO2 levels got very high. They decided to put him back on the circuit tomorrow. Doctor Keller came over and spoke with us regarding Kaden's issues. The biggest issue is that Dr. Keller doesn't think that Kaden has enough lung to support his body. That is why his CO2 levels got so high so quick. She said that Kaden had done everything he was supposed to do to try and get better. He has been peeing a lot, and his right lung has opened up, but she thinks it's just not enough lung for Kaden. She also said that she is worried about keeping Kaden on the ECMO circuit overnight and that they would be keeping a very close eye on things due to mechanical issues with the ECMO unit. We asked if it was possible to change out the ECMO machine, but she told us that she doesn't think Kaden is strong enough right now to recover from that. So as of this afternoon, Kaden's stats were looking very good when we left the hospital. They will be doing lots of lung treatments trying to get Kaden strong for tomorrows event. Kaden will have to come off ECMO tomorrow.

It has been a very stressfull day for Kristi and I. We have spent pretty much every minute of our day by Kaden's bedside praying that he will be able to survive coming off ECMO tomorrow. After they did his last lung treatment at 6:00 pm, and his stats were looking good, we decided to go back to our hotel room. We are both a mess both mentally and physically. We haven't even had time to eat anything today. As soon as I'm done with our blog entry for today, we are going to try and get some dinner.

In no way, shape or form am I giving up on Kaden, but after today's news, we are starting to feel very sad. We both are still praying and want Kaden to pull through this tomorrow, but we also don't want Kaden to have to suffer if there is no way he can survive. I know this has been a very difficult road for lots of us, but no matter what happens, I will never forget the time that I got to spend with Kaden everyday in the NICU. I hope everything goes well tomorrow and we can move on to the next! I'm really praying that Kaden can survive and adapt to the change over from ECMO to the ventilator, so that he can get well enough to have his surgery. Then they can get started on his left lung to assist with getting rid of some of that CO2. Now is really the time that Kaden needs prayers from around the world. He needs God to step in and heal his lung so that he can do well tomorrow.

Grandma Mary, Grandma Debbie, sister Jessica, and brother Logan came to the hospital today. Both grandma's got to come in and see Kaden. Logan is still stuffed up with allergies, so we didn't want to bring him in because of his sniffling. I feel so bad for Logan. He really wants to go in and see his little brother. Jessica didn't come in today. She is really hurting bad and it breaks my heart. Brother Christopher has called about 10 times today to check on his little brother. Christopher is with his dad in Sacramento, but is very worried about Kaden.

I'm sorry that I don't have good news to tell everybody. I wish I could have posted a picture of Kaden with no canulas in his neck and his levels sky high. We will see how it goes tomorrow. Just pray that everything goes well. Kristi and I are going to get some food and try and relax as much as possible before our long day tomorrow.

We love you all and thank you all for your continued support of us and Kaden.


Saturday, April 11, 2009

The incredible shrinking KADEN

Well, if you take a look and the before and after will notice that Kaden is really lost a lot of his swolleness. (Top pic was 3 days ago)(Bottom was today) Today, he continued to have good stats all day long and is still scheduled to do a trial to try and get off ECMO at 10:00AM Easter morning. We hung out at the NICU all day today just talking to Kaden and giving him love. We got really worried from about noon to six thirty in the afternoon because it looked like he wasn't peeing like he was supposed to. He started off with really good numbers in the morning showing that he was losing more fluid than he was taking in. But, in the afternoon, his numbers went back to the positive (+40)for the day because he wasn't going pee like he should have been. About 6 o'clock, I asked the nurses why he wasn't peeing like he was supposed to and they had no clue why. About six thirty, I was thinking...why isn't Kaden peeing? It looks like his body is really losing fluid, but, I don't see any pee in his cathater bag. So I started using my investigative skills and came to the conclusion that his cathater connection to his bag was leaking yesterday and the nurses taped it and put a diaper around it. I asked the nurse if she had checked the diaper that is surrounding the leaking cathater and her face lit up as she picked up the soaking diaper. The diaper was full of Kaden's pee-pee. His cathater had been leaking all day. The nurse weighed his diaper and his number went from (+40) to (-129) which was totally awesome!! Kaden had been peeing all day and we did'nt even know it. So, once we figured out that mystery, we were good to come back to our hotel, get some dinner, and try and relax for the night.

We called the NICU just a few minutes ago to make sure that Kaden was still on track and making god number. He was indeed, which makes us very happy! Now, Kristi is having stress about tomorrow's trial run to get Kaden off the ECMO. I think he will do just fine. He needs to get off the ECMO so that he can start preparing for his corrective surgery. I will update in the ASAP to let everybody know how it goes in the morning.

On a side note-- Shane Nelson (Nayeli Faith Nelson's daddy) came by today to visit us in the NICU. He got to see Kaden and gave him some great words of encouragement to beat this CDH butt. It was very nice of Shane to take time out of his day off to come and see us and support us. Thank you!

So, everybody please pray for tomorrow that Kaden does well for his trial off the ECMO. Doctors say that if everything goes well on the trial, they will de-canulate Kaden and get him off the "Bloody Beast" as Kristi calls it. I am 110% positive that Kaden will be off tomorrow. I think ECMO gave his body the rest it needed, now he is ready to continue on his recovery and move on to surgery. More to come tomorrow.

Friday, April 10, 2009


Kaden continues to have excellent stats last night and all day today. He is still making good pee pee. We can really notice that his swelling is going down. Don't get me wrong, he is still very swollen, but it has gone down quite a bit. I can actually see some wrinkles in some parts of his skin from where it was stretched out. So all is good for his stats and he's still doing what he's supposed to.

We had another meeting with the doctors today. They told us that Kaden needs to keep on going with his progress, and Easter Sunday, they will be doing a trial to see if he is ready to come off ECMO. If he's not ready on Sunday, then Monday will be the day. I really can't wait to get him off the ECMO. They were telling us today that they want him off as soon as possible just in case they have anymore problems with the ECMO circuit. They think that if he stays on track with the same progression as the last two days, he should have a great chance getting off the ECMO.

We were kicked out of our room at the hospital today. Our social worker told us that she was going to try and get us into one of the local hotels and that we would split the bill with the hospital. Well, she did get us into the Carl Hotel which is located .4 miles from UCSF. They picked up the bill for a three night stay. We checked in today and it's really not bad at all. It's a small room with a bed, toilet, shower, and a small 12 inch TV. Perfect for Kristi and, it's within walking distance. We will be spending most of the day at the hospital with Kaden anyways.....the room is just a place to lay our heads and take a shower.

This evening, Uncle Jose, Auntie Megan, and brother Christopher came to visit Kaden. Auntie Megan bought us dinner at BurgerMeister. It was really good and it was nice to step away from the hospital for the first time in over a week. After dinner, we went back to the hospital to check on Kaden. His numbers were still up and he was making good pee. We told him that we loved him and we would be back in the morning. We walked back to our hotel, and are now trying to relax a little bit. Of course, I know that Kaden is on both of our minds constantly....but it's nice to be away from the hospital setting.

We got a really nice gift from Marion, Jason and Angel Addison for Kaden today. It's a CDH Cross for Kaden's Isolet, and a beautiful ceramic cross that says, "For this Child I prayed". We will place them both on Kaden isolet in the morning when we get back to the hospital.

Thank you all so much for everything you are doing for us. More to come tomorrow.

Thursday, April 9, 2009

A "Good" Day

So last night after shift change, we went to see Kaden in the NICU. As we entered the NICU, we noticed that the X-ray tech was leaving Kaden's area. We asked what was going on and they said that they were having some problems with Kaden's ECMO canula was still kinked. The surgeon was able to adjust his canula (move it around and re-stich it in a different area) to try and compensate for the kink. worked! Kaden's stats immediately shot up to the 90's for his O2 levels. We were very happy and told the surgeon that he could come and touch Kaden whenever he wanted to. We hung out until about 11 pm, then decided to try and get a good night's sleep.

We woke up this morning feeling pretty re-freshed. Kristi and I both slept good all through the night. I think we ended up getting up about 8am which was wonderful. We got up and went to check on Kaden. We walked in to see our little man with a bag full of pee-pee and his stats were GREAT! The doctor came and talked to us only to say, we don't really need to talk today.....Kaden is doing what we want him to do. She gave us the thumbs up and walked away. That made us feel so good. Kaden's stats remained good all day and he continued to make lots of pee-pee. He is still very swollen, but he is getting rid of more fluid than he's taking in. They had to up his paralsis meds to prevent him from moving a whole lot. His canula is very sensitive, and they don't want him squirming around too much. The doctor also said that if everything keeps on going in the right direction, we won't have to come to a decision tomorrow.

We are both very frustrated with the ECMO machine and the kinked are the doctors. But on the other hand, ECMO has kept Kaden alive and gave him a chance to heal and get stronger. As long as his numbers stay good and he continues to pee-pee, his lung should come around. They say that his lung is getting better and they are starting to hear some more breath sounds. We just need to get lots more fluids off to help Kaden.

That's about all the news for today. Good news is great!! We are about to go back to see him and tell him good night before we retire for the night. Our social worker has also told us that we have the room we are currently in until at least April 12th. That's nice to know that we don't have to leave the hospital. That is about all for now, I will update you more tomorrow, or sooner if anything changes. Thanks again for all the support!

**************Baby Collin is still recovering well from his surgery.*****************

Below is a photo of Kristi's fortune she got from her fortune cookie today at lunch. She taped it up to Kaden's isolet.

Wednesday, April 8, 2009

Update on Kaden- April 8, 2009- By DAD

Usually, Kristi does all of the updates for Kaden's blog. Today, she's really tired and worried about our Kaden. So Daddy is giving the update today. After being discharged yesterday, we did end up sleeping in the waiting room in the NICU. It was four doors down from where Kaden was at, so that was nice....but the pull out couches were not too comfortable. Kristi got hardly any sleep at all, and I slept in between the slams of the bathroom door right outside our door. I didn't even long as we were close to Kaden. Before we went to bed, we checked on Kaden and told him goodnight. His stats were pretty good (good heartbeat/blood pressure), and his O2 levels were in the 80's.

We got up this morning around 8:00 am and immediately went to check on Kaden. As we entered the NICU we noticed that Kaden's stats were not too good. His heart rate was good, but his blood pressure and O2 levels were not so good. His O2 levels were down in the high 50's low 60's. The nurses and doctors were trying to figure out why his stats had dropped down so low. The surgeon was tinkering with his ECMO canula because they thought it might have a slight kink in it. They were able to get his blood pressure back under control and his O2 levels into the mid 70's to low 80's. Today, Kaden's stats were pretty much stable with great heart beat, good blood pressure and O2 levels staying anywhwere from 70-84. One of the doctors wanted to have a meeting with us at 10:30 am with the social worker. Kristi was very worried at that time. She immediately thought that they were giving up on Kaden. Kristi broke down crying and asked Dr. Liz if they were having the meeting because they were giving up on Kaden......Dr. Liz said, "Absolutely not"!! She just wanted to get together to talk about the game plan. So Kristi and I went downstairs to get some breakfast and coffee prior to the meeting.

We met Dr. Liz and our social worker Stephanie at 10:30 am. Basically, we went over where Kaden is at compared to last Friday. We discussed what needs to take place in order for Kaden to get off ECMO.

Number 1 issue is to get the swelling down. So most of us know that ECMO causes a great deal of swelling. Kaden is very swollen right now. It really breaks my heart to look back and his pictutes from Friday compared to now. I knew that he would swell, but had no idea that it would get as bad as it is. I feel so bad for my little boy. It looks like he is in so much pain. They are giving Kaden lasix every 4 hours to try and get him to urinate some of the excess fluids off. His urine output is improving, but he has a lot of fluids to get rid of.

Number 2 issue is to get his right lung to open up. They have been giving Kaden breathing treatments every 4-5 hours which he loves! Everytime the respritory specialist comes in to do Kaden's treatment, his stats go up with O2 levels in the 90's. They are still flushing his lung/tube with saline solution, then they try to suck out the bad stuff. They are getting some mucas, as well as old blood clots. They are hoping between getting the fluids off and the lung treatments that they will both help him.

The team of Doctors pretty much have said other than that which they are doing now....the rest is up to Kaden. He needs to start helping them to rid the excess fluids. If things are not any better by Firday, they said we will have to talk again. I have really been trying to stay 110% positive for Kaden, my wife, and my enitre family. I will continue to stay positive until the end no matter what happens. Every day we face different challenges. Some of these challenges are very hard to stay positive, but I must do this for my son and family. I know that Kaden and our family has a world of support and prayers coming from all over the world. I thank everybody for this.

On a brighter note...they are letting Kaden's paralysis meds wear off a little bit. So we get to see a small amount of movement from his little body. I am loving the ability to feel his fingers move on my hand, or see his big Fred Flinstone toe wiggle as I touch the bottom of his foot. It's nice to see his chest and abdomen rise and fall. These are the first movements we have got to see since he was born. They are letting him move around a little more to see if it will help him get rid of some of the excess fluids. If he starts moving too much, they have to give him some more meds. They don't want his ECMO canula coming out. Kristi and I have been sitting in the NICU with Kaden pretty much the entire day. It's been nice to spend the day with Kaden. We left Kaden during shift change and to update the blog. The social worker placed us in a different room tonight, which is still on the same floor as Kaden. We have two couches that pull out into beds. Kristi is laying across from me as I type taking a nap. She really needs the rest, so I will let her sleep. Shift change is over, so I wil be heading back in to be with Kaden until later on tonight. Myself or Kristi will either update again tonight, or tomorrow...depends on what's going on with little man.

Kaden is a fighter just like me. Kaden will not give up. Kaden will fight until he pulls through this. He knows that he has many many people praying for him and supporting him.

I just want to thank EVERYBODY again for everything that you have done to support us. Thanks and talk to you later. CRAIG KUEHL---Kaden's daddy

******Information regarding Baby Collin******

Baby Collin had his surgery yesterday afternoon and is doing very well. His parents Tim and Hayley have been coming everyday from Concord to see their little CDH warrior. Collin is being weened off the paralysis meds and is moving around a lot. I saw his little open eyes earlier today. Just wanted to give you an udpate.


Tuesday, April 7, 2009

April 7th Update on Kaden

Today has been one of the emotional rollercoasters for me. It started off really good--we went to see Kaden this morning and his color was really pink and his stats were where they needed to be. He was making urine (still could make some more), and looked a little less swollen. Around two o'clock the pulmonary doctor came in to talk to us about putting a scope down his trach tube to get a look at the air sacs in his lungs and to see if she could flush out some mucus. I guess I was expecting to come back and them to tell me that they had gotten alot of mucus out of his lungs and it would help get his air sacs back open, but that was not the case. She said she did see alot of mucus--I am crushed :( I don't know if I am expecting to much, to fast, but I feel like we are so under the gun to make progress, that if it isn't made quickly that they may tell us there is nothing more they can do. Dr. Liz said no matter what we should have a "sit-down" meeting with all the doctors to discuss his condition--that in itself terrifies me. I don't know if I want to discuss it. I just want him to improve every day and I don't want to hear any negatives. They know he has lungs from the x-ray that was taken on Friday when he was born, it is just about getting it to open back up. I just feel so helpless, and am trying to stay positive, but I feel myself crumble at any news I don't consider to be an improvement. They must be letting him wake up a little bit because we can see him move his chest and his hands and feet a little. I would give anything just to be able to hold him.

The nurses and doctors here at UCSF have been nothing short of fabulous to us and Kaden. We do feel like he is getting the best care possible and they are doing all they can for him. They are very compassionate and caring people. I was also discharged today, and they had no extra room for us so Craig & I are sleeping in the waiting room tonight. At this point I would sleep on the floor if I had to--we cannot be far from the hospital and it takes to long to get here in an emergency from Fairfield.

Please, please, please continue to pray for Kaden's lungs to start working. Everything else is working, and it is so frustrating that this seems to be the only problem that he has (albeit a BIG ISSUE--functioning lungs). We really need his air sacs to start opening...

Monday, April 6, 2009

I got to change a poopy diaper!!!

I know it seems like I post alot, but I find it very therapeutic. We went up to see Kaden a little while ago and I got to change a poopy diaper--I really never thought I would get that excited about changing a diaper under any circumstance. Kaden is feeling all your prayers. He is really hanging in there and fighting hard to make baby steps in the right direction. While we were there, his doctors (Dr. Liz & Dr. Roberta) decided to try to see if it was mucus in his lungs that was causing the collapse, and IT WAS! So, after suctioning out some of it, they are now going to try and give him breathing treatments every 4 hours. This will hopefully help with being able to re-open his air sacs. Dr. Liz just left our room. She came by to talk to us on her way home. She (and everyone else) has been so great to us and Kaden. I think she has a crush on him! She said that we should be encouraged by the fact that his body is really doing quite well under the circumstances. His heart is working great, his organs are functioning well, and his brain scans have all come back clear. We just have to get over this lung tissue issue :) Here is his pic from this afternoon. You can see he is very swollen, and his little eyes and "fish lips" look so painful, but if you see any pictures of other babies on ECMO they all look the same. He is still the most beautiful thing I have ever seen...

Please continue to pray for lung functions and pee pee making. We definitely feel God with us, and Kaden is fighting so hard--he must be listening to all the "CDH Angel Babies" whispering in his ear that he can do it!!

On a side note. We got to meet the family across from Kaden's isolet. Their son, Collin, was born on Thursday with undiagnosed RCHD. He was brought here Code-3 from another hospital about 30 min. away. He has been doing well and is having his repair surgery as I type. I cannot imagine what it was like for them without any warning. They are a young couple and have a 1 year old at home as well. Please include Collin in your prayers--that he does well with the repair and has a quick recovery.

Kaden Needs LUNG PRAYERS!!!

Where is Kaden? Can you believe all this for one baby?

We got to "touch him softly" this morning :)

Daddy is VERY NERVOUS about moving any of his tubes...

I just want to give a quick update since we saw Kaden this morning. He is really retaining fluid from the ECMO, and he was peeing (the pee-pee prayers are working), but they cannot tell anything about his lungs since he has so much fluid build up. The doctors said that this is a very common occurance, but at this point his lungs are collapsed because of all the fluid and in order to see what air sacs he has developed, they have to get the fluid levels down. He looks like the Michilan Tire Man, but he is still so beautiful. Please pray specifically that his lungs start to respond to the fluid removal and that it will allow ECMO to do it's job. We will update again when we know more.

Here is Daddy with Kaden this morning. All of you who know Craig, knows that he is the "king of jingles". He sings "Kaden Kuehl is Kung-Fu-Fighting" to him and it does make me giggle--I think Kaden likes it too since he has heard it over the last 9 mos:)

Sunday, April 5, 2009

Update on Kaden

Just wanted to give everybody an update on Kaden. He is holding his own on ECMO. The Doctors and nurses are constantly keeping his stats where they should be. He is a very sick boy, but they say he is doing as well as a severe CDH baby and we just have to take it day by day to see how he improves. We got to see his little feet and toes wiggle at us this morning when we were visiting him. Grandma Debbie, Grandma Mary and Sissy (Jessica) came to visit today. Please pray for Jessica, too. She is having such a hard time with all of this. I think it is hard to really deal with when you are 16 years old and I know that she feels like she doesn't have anyone (her friends)who can understand what we are going thru. She is an emotional mess, too, not sleeping and crying at the drop of a hat. I feel some sort of guilt for putting my children thru this, it is not suppose to be this way.

It is amazing how it is the little things that make our day--just seeing any movement from him. We were told today by the doctors that the valve in Kaden's heart was closing (the valve that normally closes at 2 days old) but because his lungs are so small, it was making his O2 levels drop and making his heart work harder. I don't know if we mentioned before, but Kaden is only on the lung bypass ECMO. They felt his heart was strong and did not need to be bypassed. They gave him a drug to re-open the valve and his stats almost immediately improved. We are just in the waiting game to see how much of his lung tissue has viable air sacs. If he does not have enough air sacs, there is not alot they can do for him. For right now, we are really praying for his little body to continue to make urine (his urination has slowed down a bit since most of the blood is going to his brain and lungs and not the other organs in his body) and that the lung tissue that he does have will "relax" and start to oxygenate his blood. Like Kellie (Carter's Mommy) said, I feel like ECMO, at this point is a safety net. We do not expect him to have any drastic changes while on ECMO these first few days.

I know everyone is praying for us. We feel your support and appreciate all the comments. We are finding great comfort in your CDH stories, and are going back and reading the blogs of all the babies that were on ECMO. It helps us stay focused on remaining positive and believeing that Kaden can beat this. I know he knows how much we love him and want him to get better.

Saturday, April 4, 2009

Mommy putting aquaphor on my lips.

Update and some pics

This is Kaden yesterday afternoon when his stats were good--Before ECMO

This is this morning after he was on ECMO

We just got done visiting Kaden in the NICU. He looks sooo good compared to when we saw his last night BEFORE the ECMO. Our little man gave us quite the scare, but we came to realize that the problem with the ECMO procedure was not Kaden's. He was doing very well until the trach tube came out/got clogged. Then his little heart just could not withstand the lack of oxygen. But, we are only looking forward and not back. He is doing really well right now, they are pleased with his levels and are actually going to try weaning his off the paralytic drug. Which means we may get to see his eyes :) The brain scan machine show normal brain activity, so I am putting that out of my mind as well. He is going to be getting an ultrasound of his head everyday now that he is on the ECMO to check for bleeds on his brain. I was actually surprised how swollen he wasn't, but his nurses say he is peeing ALOT. I do expect him to get puffy, but as for now he still looks alot like he did yesterday.

I cannot explain to everyone what it feels like to be told that your son is probably going to pass away and they need you right now. I was almost in a catatonic state--I didn't cry the whole way to the NICU--I felt God with me and knew that I could not change anything that was happening. But when we got there and he was being stabilized I just tried to take a deep breath and told God that I didn't want Kaden to suffer in any way, and if his plan was to take him than just let me hold him and let him go peacefully. So I am praying that this is God's way of telling us that Kaden is meant to be here. We are so proud of how hard he is fighting and know that he is not ready to give up, so we will not give up either.

We feel your prayers and appreciate all your support. I am usually the "blog stalker" but forgive me for being a little MIA for the next few days. We are reading your comments--we read them together out loud and try to make it thru without crying. We have come to realize that Kaden & God are in control and instead of taking it day-by-day, we take it minute-by-minute. We love you all and our prayers are still with your little ones and families. Please continue to pray for our Kaden.

The worst night of our lives

i apologize for the short post, and not alot of details, but we are so physically and emoitionally exhausted that I really don't feel like writing alot. Kaden had a really bad night, and it was decided that it would be best for him to go on ECMO at midnight. During the proceedure, his trach tube came out and they had a really hard time getting it back in because the canulas for the ECMO machine were already in place. The nurse came and woke us up (after about 1 hour of sleep) to come up to the NICU because they didn't think that Kaden was going to make it--his heart had stopped, and the were doing chest compressions and giving him drugs to try to restart his heart. I went up there feeling like this was the end of our journey, but by the time we got there, his heart was beating on it's own again and they were stabalizing him. They are now not sure if the whole ordeal caused any damage to his brain, but they had brought in a brain scan machine that measures brain activity before we left, and said that his brain activity looked normal. So at 3am Craig & I got into bed and we slept unitl about 10am. We are on our way to the NICU to see him, the nurse said he was still stable. I will try and keep everyone posted as much as I can and your words of encouragement are definately getting us thru the day. I know I don't even need to say it, but please pray that Kaden can be that "miracle baby" and astound us all.

Friday, April 3, 2009

We NEED Prayers

I am sure this is probably part of the rollercoaster ride, but I am really getting sick to my tummy:( Kaden is really struggling to keep his Oxygen levels up so they just made us leave the NICU and may be putting him on ECMO. This really scares me, but if it is what he needs... Craig and I are so tired. We have gotten 2 hours of sleep in two days, and I cannot even function. Please, share your ECMO stories with us--I am in need of some serious encouragement. It really just kills me to hear how sick he really is.

Keep praying for us and our little fighter. I will post in the morning...

Kaden Alex Kuehl

This is Liz Nayeli's mom writting for Kristi and Craig. Kaden Alex Kuehl arrived this morning at 6:05am weighing 7 LBS 12 OZ Kristi is doing well and recovering from having a Csection. Kristi said that Kaden squeeked when he was born. I think he was trying to cry but they probably didnt allow him. Kaden has been stabilized. Kristi and Craig were able to see Kaden for a short time and are going to see him again right now. The Doctors are going to meet with Kristi and Craig. Please continue to pray for Kaden as he fights CDH.