Our CDH Journey with Baby Kaden

Been A While

2011-05-24T16:49:00.000-07:00

A lot has transpired since that last post. As most of you know, I miscarried in January at 9 weeks (the day before my birthday). Since then, we have given up on "trying" for now. At 40, I'm not sure it is in the cards for us. But, I have been working on a "labor of love" lately. It is called SweetBabyBump.com and is a Trying to Conceive, Pregnancy and Parenting website. As most of you know, I was big into TWW while I was pregnant with Kaden, and after his death went back while we were TTC. I got so much support there from my on-line friends that I wanted to create that experience for someone else. If you get a chance, go by and check it out. You will always find me there....

CHRISTMAS MIRACLE

2010-12-23T07:52:00.000-08:00

It has been forever since I updated Kaden's blog. This was always about our journey with him, not about what was going on in our daily lives. This time of year is particularly difficult for me. I know this would have been the Christmas where Kaden would have been old enough to really be excited about the tree and the presents. I remember that so well with the other kids and there is something magical about that age and Christmas. I know he is spending his Christmas with his angel friends. I know he knows how much we all love and miss him.

This Christmas has brought us new hope. We are pregnant again and are praying with all we have that this will be our "bring home baby". So far, so good. It is hard not to be scared that something will happen, but I really have a good feeling and am enjoying every day. Please keep us in your prayers and I will keep you all updated.

Hope you all have a great holiday season filled with family and friends and lots of love :o)

Happy 1st Heavenly Birthday

2010-04-03T10:51:00.000-07:00

A year ago today we began that horrible CDH rollercoaster ride. Getting to see Kaden for the first time, being so scared that things would turn out like they did. I wouldn't trade the 17 days with him for anything but I wouldn't want to relive them for anything either. We were such a mess...not prepared--like you could ever really prepare for that ride. I am sad today thinking about the "what should have beens" for you. We would be having a birthday party for you this Easter weekend, but instead I am just trying to get thru the day with my "best" face. In actuallity, these next 17 days are gonna be rough. It feels like it was yesterday, but a year has already passed. We all miss you terribly, and love you so much! I hope that you and Max get to have cupcakes!

"Minor" disappointment :o(

2010-03-29T14:58:00.000-07:00

Well, looks like this little bean wasn't "sticky" enough to hang in there. I am not "devestated", but definately disappointed. We are excited to be trying again this month and I feel like we are finally on the right path to being able to get pregnant again. Keep us in your prayers, and maybe we will get a Christmas Baby! We appreciate all your support and will definately keep you updated.

Our St. Patty's Day Gift From Kaden

2010-03-18T17:12:00.001-07:00

First I would like to point out that my sweet little man is wearing his St. Patty's Day hat in the picture to the right. It was taken shortly after he was born, and before I got to see him. His Grandma Mary (who's VERY Irish) put it on him and took his picture. It has always been one of my favorites. Well, yesterday, on St. Patty's Day, Kaden sent his Mommy and Daddy new hope for a baby to love. After trying fertility treatments from August to December, we decided to take a few months off and give me time to heal--physically and emotionally. I knew I was not ready to give up our dream of having a baby together, so I took the time to get serious about preparing my "old" body for a new baby. I started an organic diet, minimal meat, no processed foods, etc. etc. and I started taking some natural supplements that were suppose to increase egg quality and overall fertility health. So, this month we decided to try again....but with NO fertility drugs, and just do the IUI! As you can see.....it WORKED!!!

New baby Kuehl will be here approximately November 29, 2010! Just in time for the holidays! I have to say I was so dreading Kaden's 1st birthday coming and me not being pregnant...my little man knows my heart so well!!

Eleven Months Old

2010-03-03T10:16:00.000-08:00

Today is the 11 month marker. Hard to believe that Kaden would have been a almost a year old. Time seems to be flying by so quickly. Not that I want it to stand still or anything, but as each day passes, I feel farther from him. This experience has been the hardest time in my life. And I think our inability to get pregnant again makes it worse. I really miss having Kaden in my tummy where he was safe and okay. I think back to the day he was born and how hectic everything was. I wish I could relive that time when he was here. I know I would do some things differently. I would give anything just to be able to hold him again, even though I only got to hold him once when we were saying goodbye. I miss holding his hands and touching his full head of hair. I miss his little feet. I just miss you baby.

Daddy's new tattoo in memory of Kaden Alex Kuehl

2009-11-30T16:47:00.000-08:00

Here is the finished product...After 5 1/2 hours of pure pain. Craig said it really hurt, and he had to lay flat, but it was nothing compared to what Kaden had to do in those precious 17 days. I am getting mine next. Something on my foot. Don't quite know what yet...

7 Month Angel~versary

2009-11-20T12:27:00.000-08:00

It has been seven months now since you have been gone from me. It still hurts like it was yesterday, but it does seem, somewhat, in the distant past. Life continues on without you, but you are never far from my thoughts. I have talked to other women who have lost babies, some of them over 40 years ago, and it seem that my pain of losing you will always be here-until we can be together again. But I am okay with that. It means that you will always be with me, even through my pain of missing you. I still look at your sweet face every day and miss having you safe in my tummy doing your Kung-fu-fighting. I really miss that. I had so much love to give you, we all did. I just hope that you can feel it still. We all really miss you, what we dreamed for you and wanted for you. I love you baby boy...

Candles for our babies

2009-10-16T12:25:00.000-07:00

Last night was Infant Loss Awareness Night, and Craig & I (and all our friends) had dinner at our house and lit candles for just some of the babies that have touched our lives. It is so bitter-sweet...I was so sad that there were so many names to list (I am sure I forgot someone). All of our bags had the names of CDH babies, ones who's stories we followed, and ones who's families were such a great support for us during our journey with Kaden. There was just one baby, Brendon, that died from SIDS on Wednesday. His mom, Carrie, was one of my Two-week-Wait friends and she was very supportive of me during my pregnancy. Her twin boys were born about 2 weeks before Kaden. I know her pain has to be unimaginable. Please pray for her family during this extremely difficult time.

Mommy's Letter to Daddy

2009-09-22T16:17:00.000-07:00

Now that things for the most part have returned to normal--whatever "normal" is for a family that has lost a child, I want to say some things to my best friend that for one reason or another have recently gone unsaid. I am so thankful that you found me, that you love me and that we have Jess and Christopher and Logan. I have never known a love like the love you give to me. I KNOW, without hesitation, that I am your world. That there is no one that you love more than me, and no one that I love more than you. Just thinking of you makes my heart smile and when we are apart (ie:you go to work) it is crazy how much I miss you. I know I have been an emotional roller coaster ride, not myself since losing Kaden, but you hang in there and love me still (sometimes it has to be difficult). I know it hurts you when I am sad, and it is not my intention ever to cause you pain or make you upset. There are things that I have to work thru in my own time, and just know that when I get sad it is not because of you, or something that you have done, but because I really miss our little guy. I am already so blessed to have 3 great kids that I sometimes feel selfish that I want another one. But my desire to have a baby with you is so deep it consumes me. I know it will happen, I am just trying to be patient. Anyway, I want you to know how much I love you--not that "I love you" ever goes unsaid in our daily life. But when I say it, I really mean it....

Happy Bithday Baby Kaden (and Max)

2009-09-03T09:09:00.000-07:00

Today is Kaden's 5 month birthday. Times seems to be flying now. With the recent passing of Jackson, Ireland, and MJ, those horrible feelings seem to creep up on me when I least expect it. It is hard to get over losing a child, but when you see other parents--deserving parents--losing their child, too, it is hard to move on. I am brought right back to my grief everytime one of these babies loses their battle with CDH. I relive in my mind what it felt like to have to remove Kaden from support-to have to make that "final" decision. In essence, to give up on him. I know Kaden is in a better place, and no longer suffering, but this whole situation is just wrong. I never thought I would ever lose a child-ever. I'm sure no one ever does, but the question as to why we are chosen to go thru this is very painful to me. I am hoping that part of the reason Craig & I were given Kaden is to help raise awareness for CDH. I know myself, and I would never be as passionate about making a difference if I, personally, had not lost a child to it. A piece of me will never be the same. There will always be a hole in my heart for the baby that I never got to know.

Mommy loves you, Kaden, and misses you terribly.

Praying for Mikey, Chanda and Tristan

2009-08-30T11:28:00.000-07:00

I just want you guys to know that we are praying for you. I am so sorry....It's just wrong...

The 4 Month Marker

2009-08-21T18:46:00.000-07:00

Just thought I would pop in and give a brief update. Yesterday marked four months since Kaden passed away. I sure do miss that little guy. The days are getting easier, I still have my moments, but I am starting to look forward to the possibility of being pregnant again (hopefully soon). Craig and I had a really great vacation, just the two of us. I have been following all the other babies that have made their arrivals, and the emotions that come thru their blogs brings me right back to the NICU--like it was yesterday. It is amazing how those feelings get burned into your being. Does that make sense? I was deeply, deeply, deeply saddened to hear that Jackson Beal earned his wings while we were gone to Mexico. His story was so similar to Kadens, and I was praying so hard that their outcome would be different than ours. Candice and Rob are in our prayers during their healing. The days after can be a serious emotional roller-coaster. Also praying for Ireland who made her entrance into the world two days ago. She is on ECMO now, but doing good and getting the rest that she needs for her surgery. Mikey and Chanda-you guys are in my thoughts constantly. It really stinks to have to go thru all this, especially after a c-section.

Anyway, just want you all to know that we are still here, taking it day by day:)

From Daddy

2009-07-29T22:17:00.001-07:00

I just wanted to say hey to everybody. I really miss my baby boy, Kaden. His whole family misses him...especially his brother Logan. Mommy misses him the most. Anyway, just wanted to give you all an update on daddy. I'm doing pretty good. I really have a hard time when Kristi is feeling down. I love her so much and can feel when she's in a funky mood. I just want her to be happy. I want her to be happy ALL THE TIME!! I know that this is a hard thing to go through for a family, but I, as a father, just want to make it right.

I am still happy that I got the 17 days with my son KADEN. Yes, I'm still upset that GOD took him from us, but that was his plan. I am still so sorry that my wife and I lost our only child together that we had been trying to conceive for over three years. But, I am happy that Kaden's story has touched so many people in this world. He was AMAZING!!! I will always love him.

Good news is...we will be trying again after we get back from our 1st vacation together as husband and wife. I KNOW that we will succeed in conceiving another BEAUTIFUL baby that has NO probelms what so ever. I really look forward to that.

I LOVE YOU ALL SO MUCH AND THANK YOU FOR STILL SUPPORTING MY FAMILY.

WE WILL BE IN TOUCH SOON.

LOVE THE KUEHL FAMILY
(Craig)

Therapy Session

2009-07-27T10:01:00.000-07:00

No, not a professional therapy session (I probably do need one) but just a "blog" therapy session. For some reason, these past few days have been extremely hard for me. I don't know what brings it on, but it hits me like a freight train. I think yesterday it was brought on by me trying to "clean" his room in preparation for a visit from Papa and Nahnee. I found myself drawn to look into his box of "special" things: his foot and hand prints, his hats, lock of his hair....you get the idea. I cannot even bring myself to take his name down off the wall. Even though I know that Kaden will never sleep in the crib, or play in the swing, or sit in the highchair. But I still have all those things ready for him. I feel so let down by God. Could He not see how much I wanted and needed Kaden? I feel broken and alone in my grief. I know there are others that feel pain LIKE me, but not MY pain. I have fears of never being able to get pregnant again, never getting to bring home a baby that is mine and Craig's. Wanting Kaden to come back to me. I want him. Painful...

My CDH Ribbon

2009-07-22T15:22:00.001-07:00

I am so excited! This just arrived. Ashley and I found a lady when we met up in Arkansas that does stained glass, and I had these made for each of our little guys. It turned out so good. Hopefully, Ash, yours comes soon!

Mixed Emotions

2009-07-15T09:58:00.000-07:00

I know it has been quite a while since I have posted. Kaden's three month marker was on July 3rd, and we went back to Arkansas for my 20 year class reunion on the 4th. It was great to be home. I had not been back in over six years, and I got to reconnect with all my closest friends from high school. It was hard going there with no baby to show off, but everyone got to see Kaden in our pictures. It was a healing time for me. Ashley, Max's mommy, came to visit for a couple of days and it was like we were old friends, not two tragically linked mommies meeting for the first time. It was so good for me to have that time with her.

As for us, we are back on the "serious" baby making journey. Our first appointment is Monday, and I think we may be able to actually start the injections then. Keep us in your prayers that it works and doesn't cost us a fortune! It makes me so happy just to know that we are able to try now. This is the month that we conceived Kaden so I am hoping he will being us good luck :)

I am deeply deeply saddened to hear that baby Avery lost her battle with CDH last night. It brings back such painful memories for me and I know how difficult the decision is to make. Please pray for Shane, Carissa, and Kaitlyn as these next few weeks will be difficult. They will need all the support they can get, and it seems like they have alot of great people who love them. I know it was the support of our friends,family, and even complete strangers that got us thru the loss of Kaden. We would have been lost with out them.

I will try to be better about updating more, but like I always say, I am still following all of your blogs and praying for you all. I miss my Kaden every day, but I am beginning to work thru my sadness and move forward. Mail your envelopes!

The Two Month Marker

2009-06-04T09:15:00.000-07:00

Yesterday marked the 2 month birthday for Kaden. I tried to post last night, but couldn't. It was an emotional day for me and I received alot of phone calls and text messages, and even a "thinking of you" card from all the nurses and doctors that took care of Kaden at UCSF. So I was on the emoitional rollercoaster yesterday thinking alot about him and what it would have been like to have an 8 week old baby in the house. I talked to Ashley (Max's Mommy) yesterday, and it is nice to be able to vent and share feelings with someone who knows exactly how I am feeling. Max & Kaden share the same birthday, just one month apart, so we will forever be "connected" in that way. Like I said yesterday, I cannot think of Kaden without thinking about Max. That will never change and I pray that they are together playing in heaven. For those of you who have lost babies to CDH, you may understand the things I am about to say. We, as parents, go thru things in the moments that we make the decision to let our babies go peacefully. For Kaden, it may have been peacefully, but for me it was gut-wrenching. I think about those moments all the time and second guess our decision. After talking to Ashley, she made me realize that we sometimes have to make decisions on what is best for our children, not for us, and I do not know the quality of life that Kaden would have had had we made the decision to do everything until he gave up on his own. It is just so painful to think that I took his life away, and I cannot get the image of him opening his eye to look at us for the first time. Everyone tells me that he was looking at us to say good bye, but in my mind he is looking at me asking me not to let him go. I still to this day cannot look at that picture.

I am sure all these feelings are very normal, I just seem to keep them all at bay until I am alone, or it is a "marker" day. I am sure it is normal to hate this CDH with every fiber in my body, and feel so helpless and I feel like I made Kaden suffer for my own selfish "wants". I look at the pictures of him on ECMO, and there is no way that baby was "comfortable". Paralyzed, maybe, but not comfortable. I understand that ECMO saves MANY CDH babies, but in my case it did not, and all I am left with are gruesome pictures of what I did to my beautiful son. I know I would feel totally different if the outcome would have been different, but it wasn't. I hope Kaden knows that we made decisions for him based solely out of our deep love of him and if he suffered in any way, I am so sorry. We just wanted you so bad. I sincerely apologize if I offended anyone with this post. It seems to help me to start to "vocalize" some of the things that go thru my head that I feel I cannot speak to anyone. Not very many people in my life can truely relate to what I have going on.

Craig & I are taking Logan and Jessica back to Arkansas the 4th-13th of July for my class reunion. Christopher is there right now, for two weeks. He couldn't go with us because he starts football camp on the 22nd. I am excited to get to see all the people I went to school with, but have some anxiety about going to a reunion 3 months after giving birth with no baby. I am sure we will have to tell the story to many, but hopefully it will raise more awareness for CDH. I continue to follow everyone's blogs and know that I am praying for you all :)

One Month Since Kaden's Death

2009-05-19T13:48:00.000-07:00

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

2009-05-03T12:49:00.000-07:00

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!!!

2009-04-25T09:55:00.000-07:00

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!

2009-04-23T15:57:00.000-07:00

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

2009-04-22T12:05:00.000-07:00

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

2009-04-21T21:13:00.000-07:00

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

2009-04-20T22:05:00.000-07:00

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

2009-04-19T21:26:00.000-07:00

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

2009-04-18T21:25:00.000-07:00

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.

Keep it up Kaden

2009-04-17T18:21:00.000-07:00

HERE IS MOMMY GETTING A QUICK NAP WHILE SITTING IN THE NICU WITH 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.

ABOVE LEFT IS KRISTI AND GRANDMA MARY (KRISTI'S MOM)WITH KADEN, AND TO THE RIGHT IS KRISTI AND GRANDMA DEBBIE (CRAIG'S MOM) WITH KADEN.

Happy 2 Week Birthday, Kaden!

2009-04-17T10:13:00.000-07:00

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....

Goodnight Kaden

2009-04-16T20:34:00.000-07:00

I WOULD JUST LIKE TO THANK ADDSION AND MAXTON FOR LOOKING OVER KADEN AND GIVING HIM GOOD ADVISE ON HOW TO BEAT THIS CDH!!

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

2009-04-16T16:36:00.000-07:00

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.

BELOW IS PROUD BIG BROTHER LOGAN. HE WAS SO HAPPY TO SEE KADEN TODAY.

Good night

2009-04-16T08:48:00.000-07:00

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.

Kaden update

2009-04-15T21:18:00.000-07:00

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:)

JUST TO LIGHTEN THE MOOD:)
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

2009-04-15T16:25:00.000-07:00

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

2009-04-15T14:09:00.000-07:00

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.

Kaden holding his own

2009-04-14T22:18:00.000-07:00

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:)

Kaden is off ECMO

2009-04-13T19:21:00.000-07:00

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!

Kaden still on ECMO--Not a good day

2009-04-12T18:34:00.000-07:00

PICTURED ABOVE IS ALL OF THE ARTICLES PLACED UNDER KADEN's ISOLET

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 step...surgery! 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.

BELOW IS KADEN"S BIG BROTHER LOGAN> LOGAN IS SO PROUD TO BE A BIG BROTHER> HE LOVES HIS LITTLE BROTHER KADEN.

The incredible shrinking KADEN

2009-04-11T23:03:00.000-07:00

Well, if you take a look and the before and after pictures....you 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.

Another "GOOD FRIDAY"

2009-04-10T21:08:00.000-07:00

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 I...plus, 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.

A "Good" Day

2009-04-09T20:53:00.000-07:00

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 again....it 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. Well.....it 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 canula...as 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.

Update on Kaden- April 8, 2009- By DAD

2009-04-08T18:58:00.000-07:00

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 care...as 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.

PLEASE KEEP THE PRAYERS COMING FOR KADEN ALEX KUEHL

April 7th Update on Kaden

2009-04-07T19:45:00.000-07:00

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...

I got to change a poopy diaper!!!

2009-04-06T17:46:00.001-07:00

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!!!

2009-04-06T12:25:00.000-07:00

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:)

Update on Kaden

2009-04-05T15:27:00.000-07:00

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.

2009-04-04T21:29:00.000-07:00

Mommy putting aquaphor on my lips.

Update and some pics

2009-04-04T14:26:00.000-07:00

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

2009-04-04T11:12:00.000-07:00

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.

We NEED Prayers

2009-04-03T22:50:00.000-07:00

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

2009-04-03T14:04:00.000-07:00

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.

Kaden Changed Plans!

2009-04-03T03:17:00.000-07:00

It's 3:15 a.m. and we are getting prepped for our ce-section. We went into labor at 8 p.m. and we are UCSF. Please pray for us early as we will be having him by 5 a.m. not 10 a.m.
Updates to come and keep on praying.

The Night Before Kaden

2009-04-02T16:29:00.000-07:00

I want you all to know that I FEEL YOUR PRAYERS!! I have, at this moment, a great sense of peace and joy and excitement. The way a Mommy should feel before her beautiful son arrives into this world. I know that Kaden is in God's hands and I am praying that He will heal my precious baby that I wanted for so long and have loved since the day I drove him--"in the cup"--to the fertility clinic. (I bet you don't hear that all that often)! This whole experience,obviously, has not been what I expected but I am so thankful everyday that God gave us Kaden and brought all these great new people into my life. If that alone is Kadens purpose, I'll take it. You all mean alot to me, even if we only get together online. I have never prayed so much in my life, or prayed for so many others--"Makin' Deals with God" is what I like to call it. He is probably getting sick of me, but you know they say the squeaky wheel gets the oil :)

Anyway, here are the finished products for Kaden's Isolet Angels (and his name star so everyone knows who he is in the NICU). I hope his new "CRIB" can accomadate all his guardians.

I am going to try to get a good night's sleep tonight--yeah right! We are all packed and ready to go. Kaden is very active right now. I think he is excited too. I promise we will update the blog as soon as we get a chance tomorrow. Everyone seems to think we will be preoccupied, but I know I will be needing some serious prayer requests and I know how much it meant for me to read the updates after the babies arrived. I just want to say one last time how much all your support and prayers mean to us!

Two Days and Counting!!

2009-04-01T19:21:00.000-07:00

I guess I should at least check in once a day to post at this point. Ashley, you crack me up! I was the same way when Max and Addison were on the way--I was definitely a STALKER! I would look every hour for an update...Craig thought I was crazy:)

I have been unbelievably busy trying to prepare for the "Big Day". I am not going to lie, I am still really scared, but I am starting to get really excited. I cannot wait to see him (tubes and all) and get on the roller coaster. I am not excited about the ride, but I feel mentally ready to face it. Thanks in no small part to all you Mommies (and Daddies) that have gone before us--no matter what the outcome. Your strength and encouragement has inspired me and hopefully helped prepare us for the weeks to come.

On a different note, my Mom arrived yesterday and it is so good to have her here. I feel so guilty about having to leave Logan but he loves spending time with his "Grandma Mary". I know we will make it work, but we will just have to take one day at a time. It is hard for a 5 year old to really understand what is going to be going on. He is sooo smart, though, and always seems to amaze me with how much he really does understand. I guess I should give him more credit...

We did celebrate CDH awareness day. We all wore our CDH Awareness T-shirts that we got from Cafe Press, and at 4:00pm we let our balloons go. We did "special balloons" for Addison, Max, Joseph, Corben, Ryann, and Kaden Morrow, and other balloons for all the other CDH Angels. I will post pics when I get a sec to download them. I know the Angel Babies are enjoying those balloons in heaven.

I know all my still pregnant buddies are getting excited and nervous (and probably uncomfortable), but I want to encourage you to stay positive think NOTHING BUT GOOD THOUGHTS! I truly believe that it can make a big difference. We will all make it thru this together....

I will post my FINAL THOUGHTS tomorrow night, and I promise I will post after Kaden arrives--as soon as he is stable--not because I know what it is like waiting for an update, but because I will need your prayers & support :)

Kaden's Isolet Angels

2009-03-27T21:11:00.000-07:00

This is what I spent my day on today. I actually thought I was going to go into labor last night. I woke up sick to my stomach and having contractions-but my contractions went away after about 2 hours. I was in an absolute panic @ about 2am thinking I was going to have him early--and I am TOTALLY not prepared! I looked all day on Wednesday for new PJ's and slippers for the hospital, but of course could not find a thing. So, as of last night, I had nothing ready for his arrival. I still needed to make the angels for his isolet and wash his hats and booties--I asked God if we could "please just stick to the plan"--Next Friday was really going to work for me :) So, this morning I went and got the things I needed to make his "guardian angels" (to me that was the most important preparation) Here is Addison's and below is Max's. I also made another one, but I have not yet gotten permission from his Mommy--so I don't want to show it yet. They really turned out cute, and I think will "cheer up" his isolet.

I want to say "thank-you" to Marion and Jason & Ashley and David for all their support and letting me honor their "CDH Angels" in my own small way. I truly believe that they will be with Kaden during his battle.

As for the unimportant "hospital bag", I am on a mission to find jammies and slippers tomorrow...

Kaden will be here on April 3rd!

2009-03-25T15:53:00.000-07:00

I have gotten so many phone calls since yesterday--"How did the appointment go? You didn't update the blog..." Sorry, but by the time we got home, I was exhausted and it was 3pm--so I took a nap :)

This has been a difficult couple of weeks for the CDH family, and I am amazed every day how selfless and supportive Marion & Ashley have been with words of encouragement for us and Kaden. With their tragic losses so new, it is reassuring to me that no matter what the outcome, I will find the strength to make it thru it. You two are my Hero's :) And I pray that Angel Addison and Angel Max will whisper in Kaden's ear that it will all be okay...

Here is the update:

We had our "last" ultrasound at UCSF at 10:45am yesterday. Apparently, per Dr. Rand, Kaden looks "fantastic". That is ALWAYS good to hear, but we are still very nervous. They could not get a good look at his lungs because of his position (same as last time) but at this point in the game I am not even concerning myself with any sort of number--it will not change how he will present when he is born. He did say they could see lung tissue, but just couldn't get a measurement. They did check all his other organs, and he said they looked great--his heart and kidneys are always what I worry about the most. They estimate his weight to be 6 lbs. 4 oz., but said they are almost always larger because they estimate their weight based on the circumference of their abdomen, and the majority of the things that are suppose to occupy his abdomen are in his chest. I think he is at least going to be an 8 pounder! The best news of the day was that my fluid levels are still COMPLETELY NORMAL--20.3!! I will take ANY GOOD NEWS these days:)

So, with all that being said, they are going to do my c-section a week from Friday (April 3rd) at 10am--at which time I will be 38 weeks +. I originally really wanted to go to 39 weeks, but after talking with Dr. Rand, they feel that it is better for Kaden to err on the side of caution, and get him out before I develop any problems. So, in about 9 days, we will be new parents and are terrified and excited to meet him, our beautiful son that was created by so much love.

At this point, we are just asking for everyone to continue to pray for Kaden. And those of you that have your "Kaden Candles" from the baby shower, please light them and say a prayer next Friday for God to hold him (and us) thru this journey that lies ahead.

My Mom will be here on Tuesday, and plans to spend a month helping with Logan and Jess (not that she needs much at 17). It is such a relief that we will not have the added stress of worrying about things at home. We will continue to keep everyone posted--and we will have internet at the hospital so I will definitely update the blog and beg for prayers daily :)

Maxton--Another CDH Angel Baby

2009-03-22T09:28:00.000-07:00

I am heartbroken to report that Maxton chose wings over feet last night in the arms of his loving parents, David & Ashely. He was such a little warrior, and I know that Ashley and David are so proud of how hard Max fought to stay here with them. Please pray for their family.

36 Weeks and Thinking

2009-03-18T12:21:00.000-07:00

Well, I will be 36 weeks in 2 days :) I am feeling pretty good this week--last week was rough--and it showed in my appointment last Friday :( Not that I have much to complain about being THIS pregnant, but my fluid levels were up to 23 and I was having contractions on the NST. I did not sleep well from about Wednesday til Saturday, and for me good sleep is the key. My OB at Kaiser gave me STRICT instructions to "take it easy" (I think he is overly-cautious), but he knows how badly I want to make it to 39 weeks. And I have to say, taking it easy over the weekend ( Mom took Logan and Craig waited on me hand-and-foot) has made all the difference in the world. I feel really good again, and yesterday my fluid level was at 13! I pray to God that this is a "good sign" that Kaden is breathing and swallowing well. You know how we need something positive to cling to.

We go back to UCSF on Tuesday to discuss our birthing plan. Originally, they were going to take him at 37 weeks, but since I am doing well with my levels, BP, etc. I am pretty sure they will let me go until I start to develop some sort of signs of labor. So far, with the exceptions of the "irregular" contraction , which I am sure are just Braxton-Hicks, I feel like I could carry him forever.

Craig seemed to have a little bit of a rough day yesterday. It was his first full day back in the office when he wasn't having to run the range (shooting range, that is) or go to court, or have a training day. He came home, and we had the typical corned beef and cabbage for St. Patty's Day. Mom & Bobby came for dinner. After they left, we were just relaxing on the couch and he started talking about my big-huge-ginormous belly...then he said "you know, I don't think the people in my office realize how serious our situation with Kaden is". It just broke my heart. He has always, always, always (from the first day we got the news) been my ROCK. He has NEVER voiced anything other than "Kaden is going to make it". Don't get me wrong, he knows that Kadens condition is serious, but he KNOWS that it is going to be okay. I have never tried to argue with him the possibilities--I argue with myself enough. I think that yesterday, alot of his co-workers were asking him about Kaden and when they all say "he is going to be alright" I think it got him thinking. I told him that I deal with this daily. Some of our closest friends, I feel, don't understand the severity of Kaden's condition, or the uncertainty of what lies ahead for us. But I think that they are trying to remain positive for us, and for them "ignorance is bliss". I felt bad for Craig, because for me, I am PAINFULLY AWARE how little is known by the general population about CDH. I think people hear the word "hernia" and they automatically think "easy fix". Until we can bring more awareness to the condition, things will probably remain the same.

That is my two-cents for the day. Please continue to keep Kaden in your prayers. Specifically for functioning lung tissue. I am doing my part to bake him as long as possible!

Prayers for Jason, Marion & Angel Addison and an Update

2009-03-12T10:00:00.000-07:00

I sit here not even knowing what to write, or say, or think. When I saw yesterday that Addison had lost her CDH battle, I lost it. I am not going to lie--I have the hardest time trying to make sense of it all. I am not questioning God's plan, but just struggling to understand the "why's". My heart truly breaks for Jason & Marion, but I know they know they did absolutely everything they could for their princess, and sacrificed alot to get her the best care possible. To have to go thru this whole ordeal away from their family and friends is a sacrifice in itself. I pray for peace for them in the weeks to come, and hope that they choose to stay in touch with their CDH family. We really care about them.

Please continue to pray for Maxton. He is making baby steps in the right direction, but has had a few "bumps" in the road. Pray specifically for his brain bleed to heal itself, so if he does need ECMO, they will be able to put him on so his body can rest. Ashley and David have been so strong and are so proud of their little man (not so little..)I am inspired every day by the new Mommies and Daddies strengths, and pray that I will be able to be strong as well. At this point, 35 weeks pregnant, I am scared to death and wanting so bad to prolong the inevitable. Normal feelings, I am sure, but still feelings that I cannot ignore.

I do want to say that I am happy that Charlie (aka: Gumdrop) is doing well, and Davis is on his way home :) Baby Oakley is doing great, as well, and aside from feeding issues, will probably be home soon, too. Alina is back home and doing well, and of course Nayeli is doing GREAT!! She was SCREAMING in the background last night when I was talking to Liz. Music to me ears-- :)

As for all of us Mommies that are so close to delivery: Lisa, Sheryl, Stephanie, Marilu, Lindsay, Carissa. We need to stay positive, and just continue to ask for God to hold our hand thru this journey. I am sure we are all feeling the same emotions, but we were "given" these babies for a reason and are here for each other and we will get thru it.

Good Day at UCSF--Got to meet Addison :)

2009-03-02T15:13:00.000-08:00

Just got back from my 34 week appointment at UCSF. There have been no changes to Kaden's condition, which to me is good news. They are estimating his weight at.....almost 5 lbs!! I thought Maxton was gonna be a HOSS--Kaden is going to give him a run for his money! Craig & I (and Logan) met Liz (Naylei's mommy) there this morning and we went up to the NICU to meet Marion & Jason and Baby Addison. Marion looked absolutely GREAT, (Jason did, too, but he did not just give birth!) and they were very uplifting. Addison is absolutely PRECIOUS--she is smaller than she looks in the pics on their blog. As you all probably know, she was put on ECMO on Friday night, but is doing well and getting the rest her little body needs. Please continue to keep her in your prayers. There were two other CDH babies in the NICU, too. Dr. Lee said that one of them had the tracheal occlusion done in-utero, and she is doing really well--Amazingly well, actually. He did say he couldn't say it was because of the TO procedure, or just that she would have done well anyway. Repeat after me, "NO CDH BABY IS THE SAME". But it is always good to hear of one doing great.

As for me, I am doing great...If I do say so myself. Dr. Lee said I will probably make it to at least 38 weeks, if not longer. Knock-on-wood...my AFL levels remains low (which I really hope means that Kaden is breathing and swallowing it up!) and my blood pressure, sugar levels (NO GD) and everything else is good. They checked my cervix today and there are no changes--still long and closed. So, continue to pray that he continues to remain content inside mommy and will come out close to 40 weeks with some functioning lung tissue:) Please pray for this boy to do amazing things when he does arrive...

Prayers for Sky & Carla and Angel Baby Joseph

2009-02-27T12:25:00.000-08:00

I just got home from my NST/AFL bi-weekly appointment, and like every other day I check out my blog for updates on all the CDH "family". I sit here an absolute crying mess with the news that baby Joseph lost his CDH battle last night and is now an angel in heaven looking over his mommy, daddy and two little sisters. I cannot express how hard this news is hitting me today--and how badly I feel for them. I know there are no guarantees, but I am having a hard time trying to find the sense in it all. Joseph's family is at the forefront of my thoughts, and I wish there was something that I could say or do for them that could even make it a little bit better. I guess I will just continue to pray for them, since that seems like all I do these days.

Please, everyone, keep them in your prayers as they are going thru probably the worst thing that can ever happen to a family. And after a good, hard, fight by a little warrior...

Twice a Week Appointments

2009-02-24T11:33:00.000-08:00

I guess it is a sure sign of the "quick approaching due date", when they have you coming in twice a week for the NST & AFL. I am now officially on the every Tuesday and Friday schedule. Kaden did great today, and my AFL was at 16.6!!! That just makes me sooo happy. I am trying (although I am not convinced we can control our amniotic fluid level)to really keep it in check. I want Kaden to bake as long as physically possible, and one of the highest risks to us CDH mommies is early labor due to Polyhydromnios (high amniotic fluid). Of course I love getting to look at him twice a week--today he was soooo cute: He was sucking his thumb with one hand, the other hand was on his cheek, and he had one of his feet up under his chin. Even the nurse way saying how cute he looked. He is already such a HAM! The doctor said his NST "strip" looked fantastic, so hoping still for a very healthy heart! I am nervous about our appointment on Monday at UCSF. That is always where we get the most information, and at this point I almost feel like I don't want any more information. I am really going to try to ignore any not-so-positive info (if we get any). I feel so deeply that Kaden will do amazing things when he is born, and that we WILL bring him home healthy.

This has been a VERY busy 10 days for all the newly arrived CDH babies. Addison was born on the 17th the UCSF, and our prayers are working--she is doing good and is scheduled for her surgery on Thursday. Joseph seems to be doing well and on the last update he went from "not-so-good" to being removed from ECMO and holding his own. We all continue to pray for him (and Skye & Carla) and look forward to his updates. Another baby girl, Oakley, is doing well at Atlanta (with Joseph) at 12 days. It must be so great for the families to have each other for support. I am anxiously awaiting an update on Alina--our UK CDH baby belonging to Alex & Ingrid--we are praying that her surgery went well, and she will be back home soon!! Just know we are thinking about you. Also, one of my other "little inspirations" is baby Davis. He is now about 25 days old and is doing so fantastic! Check out his blog--they all look so happy....I could go on and on, as there are so many babies already home that are doing so well. They bring me great comfort and hope reading their updates everyday.

I know that all of us "still preggo" mommies (and daddies) are starting to get anxious and scared. It will be a pretty busy month (or two) ahead of us with Kaden, Maxton, Jaime, Jon, Kamryn, Ava, Juan, Lil Peanut due to Jeremy and Carrie, and Layla all due within the next few weeks. I lift our babies up to God every waking moment that we will ALL have nothing less than spectacular outcomes. I do believe we all, as parents, have chosen the best care possible for our little CHERUBS and they will beat the odds!

In closing, I want to just mention how DEEPLY touched I was to receive a message from Jamie Morrow, Angel Kaden Morrow's mommy. Her Kaden chose wings over feet, and thru her pain, she reached out to me and told me that her Kaden was watching over mine. That means more to me than I would ever be able to express. I pray that God is bringing some sense of peace to you, James & Kayleigh. I know that your pain is unimaginable, but Kaden truely is an angel and with you everyday. He is absolutely one of the most beautiful babies I have ever seen...

To all my new friends :)

2009-02-18T14:00:00.001-08:00

I just wanted to take a moment out of my not-so-busy day (I have been sick for 3 days) to say how much all of your support means to me. If I ever questioned why God put us on this road, I believe it is because of the new friends I will make along the way. I just got off the phone with Liz (Nayeli's mommy) and she always makes me feel so good :) For that I am eternally greatful! She is going to meet us at UCSF on the 2nd (our next appointment) and hopefully we will be able to meet with Marion & Jason (and maybe even baby Addison) who arrived last night. Marion posted that Addison is doing good, so please KEEP HER IN YOUR PRAYERS DURING HER FIGHT! I also got a message from Stephanie, Mommie-to-be of twins, Brooke & Kamryn (who has LCDH) just checking in on me. I'm further along--I should be checking on YOU! I also have to mention that Megan, John Michael's mommie, posted an absolutely precious video about John's journey from birth to today on the CHERUBS website (and his blog) that made me so speachless and moved me to tears (Only HAPPY tears, Megan, I promise) I think Craig even got a little choked-up. You did such an amazing job on it! He is so beautiful--see for yourself-and to hear him laugh has got to be the best ever. It really hits home how much we take for granted sometime--I would give anything to know that we will hear Kaden cry or laugh.

Anyway, I just wanted to take the opportunity to say "thank-you" to all those who were strangers to us not to long ago, but have since become a part of my daily routine--all the CHERUB mommies & daddys. There is a certain amount of support that comes from someone who has gone thru or is going thru what we are with the CDH. They are the ones that truely understand our fears, anxiety, and moments of pure joy--I think we all go thru the exact same emotions. We are in some ways a family...

Friday the 13th...

2009-02-13T09:51:00.001-08:00

Well, today is Craig & my 5th Anniversary of the day we met. It is really the only anniversary we celebrate. We had to wait so long to get married that we really don't do anything "super-special" for our actual wedding date--call us crazy! Friday the 13th has always been a GOOD day in my life! Don't know how we are going to celebrate yet--we were going to go to Monterey for a couple of days, but I have such a hard time getting comfortable we decided just to stay close to home. Just one of the many small sacrafices we make when we are pregnant :) I did get a call from UCSF and my next appointment is March 2nd at 10:45am. I will be a little over 33 weeks then, and we "may" discuss the birthing plan. If not we will go back in a couple of weeks for that. I am starting to get really scared about the fact that Kaden will not be "safe" inside me for much longer--and I know what a fight he will have when he gets here. I just want to protect him from all the things that he will have to endure to get healthy :( I am enjoying being pregnant sooo much--not ONE pregnancy related problem (High Blood Pressure, GD, swelling--NOTHING)--I have only gained 20 lbs., and aside from just getting used to being "rounder", I feel fantastic! I pray that my AFL remains in check (last appointment it was 19) and that I can make it past 38 weeks...

On another topic--we put up Kaden's crib (it looks like a throne to me) and have gotten everything on our registry except for the rocker/glider chair that I wanted. So now all we need is a BABY!

Please continue to pray for all of us, as we are getting anxious and are praying that God will continue to give us the strength to stay strong! This is a difficult journey, but one that I am forever thankful that we are not on alone! I have come in contact with so many other CDH families, having gone thru or going thru what we are and cannot express enough how much each of their journeys inspires me on a daily basis. I am ADDICTED to everyones BLOGS and their stories and feel like I know you all...

Kaden's Baby Shower

2009-02-03T11:19:00.000-08:00

Kaden's shower was a success! With about 40 in attendance over the course of the afternoon I was feeling a little "spread thin"! MUCH THANKS to Naomie (who should be a party planner), Vanessa (who made me cry with with the "K" brownies and the CDH Ribbon cream puffs) and Jacqueline (Who should be a professional cake maker)who did so much to plan the "perfect" event for us. It was really great to see everyone and there was so much support for Kaden--I cannot express enough how much it means to us. We were really excited to get to meet Shane & Liz in person--I was actually glad to have some alone time with you guys--it was probably the highlight of my day. I have so many questions and Nayeli is my personal "BEACON OF HOPE"... My Mom was able to come from South Carolina, which meant the world to me to have her here while I was pregnant. One of her co-workers from her office, Connie, made one of the most touching gifts. It was one of the "few" times I cried during the day. It really was a CELEBRATION of his arrival! Here are a few pics:

Brownie Bites w/ "K"'s from Vanessa

The Cake Jac Made...

My CDH Ribbon Cream Puffs!!
Mommy & Daddy before the "Cake-Cutting"

The Beautiful Dessert Table

Naomie, Me, and Jac

Kaden's Shower "Loot"

On a different note, I had my appointment at UCSF yesterday. I was mildly "disappointed" that there has been no improvement, but Dr. Lee remains cautiously optimistic. It hasn't gotten worse, either, so for that I am extremely thankful. My fluid level was down to 19 (from 24 last time) so that was good news. I am just continuing to pray that God will have His hand in the birth and that Kaden will have sufficient lung tissue to be stable until they can "fix" him! Please keep us in your prayers and we will keep you updated!

Kaden in 4D at 28 weeks

2009-01-24T12:10:00.000-08:00

Prepare yourselves--He is QUITE CUTE! I am even more in LOVE than before--if that is possible. He has MY nose & lips, but he sure looks like Daddy and Logan. He definately has Craig's jaw line :) He LOVES his hands!

Today is My Birthday!!!

2009-01-19T09:20:00.000-08:00

Talk about the ticking biological clock...I am 38 today!! I can honestly say I don't feel 38 (whatever it is suppose to feel like). Craig & I were in bed yesterday talking about when we were kids, and our parents turned 38--how OLD we thought they were. Craig asked Logan last night how old he thought mommy was, and he said 60! Out of the mouths of babes.... Honestly, I feel so blessed to be pregnant at 38, and feel like I am much younger (at least 35). Things have been going really well with Kaden. I swear this boy is going to be a UFC fighter. He moves from "transverse" to "head-down" at least twice a day. I looked it up yesterday on the internet and I found an article that said at this gestational age they do a "bicycle" movement to get into different positions--I swear he is practicing for the Tour de France! I am also excited that my friends are throwing us a co-ed shower on the 31st! I am looking forward to seeing so many friends (alot that we haven't seen since we became pregnant) and even getting to meet some new friends in person for the first time (yes, I mean you--Liz & Shane). Since Craig is a CHP officer, alot of our friends are kinda all over the place--close, but not close enough to get together like we would like. I am also very excited that my Mom is going to come from South Carolina. This means the world to me to be able to have her here for a few days while I am still pregnant. She is planning on coming for a month when Kaden arrives to help with the household and Logan since Craig and I will have to spend alot of time at UCSF in the NICU. I am so truely blessed to have such a great support system :)

Got the call from Kaiser today...

2009-01-14T14:53:00.000-08:00

I am sooo excited. For those of you who don't know, Kaiser, our primary HMO had to REFER us to UCSF for evaluation. Even after the two consults with UCSF, Kaiser was putting up a pretty good fight for me to continue my care at a Kaiser facility since we decided not to do the tracheal occlusion. Well, Dr. Lee (the head of the Fetal Treatment Center at UCSF), said not to worry and worse case scenario we would have to just go to Kaiser for the growth ultrasounds but still be able to deliver at UCSF. I was okay with that, but I really wanted UCSF to just take over my care. Well, today I got a call from the genetics counselor at Kaiser and she said that Dr. Lee spoke with the perinatologist at Kaiser and requested that UCSF take over our case completely--and they approved it!!!! Even though I am not considered a "high-risk" pregnancy, I am considered a "high-risk" birth. I will still get to see my regular doctor at Kaiser for my blood-work and non-stress tests, but all the important things will be in San Fran!! It totally made my day and took alot of stress out of my pregnancy...ANOTHER ANSWERED PRAYER!!

2nd Appt. at UCSF January 7th, 2009

2009-01-07T16:47:00.000-08:00

We JUST got home (4pm here). It was a long day....

Here is my FAVORITE pic from today. It is his face--you can see his open mouth, his nose and his eyes. I know that ultrasound pics are so hard to 'see', but look at it for a while and you can see he is quite adorable!

It went pretty good. Kaden's lung-to-head ratio was about the same 1.1 to 1.2 vs. 1.0 to 1.2 last time. Dr. Lee said he would still to the tracheal occlusion for us if we wanted it, but after discussing all the risks involved, we just could not bring ourselves to do it. He said he felt we were making the right decision (I LOVE this man!)--which is a hard thing for him to say because he wants to be able to do the procedure for the study, but because they cannot give a difinitive answer as to the benefit at this early stage in the study (they have only done 7 tracheal occlusions) the risks are to high to be ignored. If they told us Kaden's LTH ratio was .8 or less, we would probably do it, but with 1.4 being the best, I am okay with 1-1.2. The harsh reality is that any baby with CDH is only given a 50/50 chance at survival at less than 1.4. I would never be able to forgive myself if we did the procedure and something happened because of it and Kaden didn't make it. We have decided to continue to let God work his miracle and pray that he will heal him after he is born and he will be in the 50% that survive.

On a good note. He was still measuring about 5 days ahead on growth and his estimated weight was 2 lbs. His heart, while still on the right, still looks normal and is beating strong! The team says he look really good and healthy, and they can see lung tissue developing--even a small amount on the left side. So I remain extremely hopeful that we will be able to play out the hand we are dealt and that Kaden will do well. If there is one thing that I have learned along this journey is that NO CDH BABY IS THE SAME. I have found so many parents that have gone thru or are going thru what we are and you cannot compare "numbers to numbers" Babies that have had next to no lung tissue at birth have lived and are thriving (after hernia repair and long NICU stays) and then there are babies that had LTH ratio's over 1.4 that did not make it. It all has to do with how well they respond to treatment after birth. Just continue to pray that Kaden will be one of the babies that can fight the long, hard FIGHT!!

My phone must have rang about 20 times during the appt. Everyone has just been so great to us and concerned for our little guy. I know we say it alot, but your prayers and support are invaluable to all of us.

I am saddened by the news...
Tonight I am praying for the families whose babies lost their CDH battles this week. Their pain is unimaginable and my heartfelt condolences go out to them. You think you can prepare yourself for either outcome, but the pain of the loss of your child, after such a fight for life is hard to understand. And to have to expalin it to your other little ones is even more painful. I know how difficult it is for Logan (he is 5)to understand that his baby brother is "sick", and how it will be really confusing to him if by God's choice we don't get to bring Kaden home. They are just so young, they expect us, as adults, to be able to fix anything.

Just by chance....

2009-01-02T11:51:00.000-08:00

First off, I want to say that Craig & I picked Kaden's name the day after our ultrasound when we found out he was a boy. BEFORE we knew there was a problem. We THOUGHT the name meant "companion". The day of our first appointment @ UCSF, I was on the phone with Liz Nelson (Nayeli's mommy) and she mentioned that Kaden meant "warrior". When I mentioned it to Craig, he was like "I thought it meant companion". I was thinking, that's what I thought. I really just forgot about it until I started making this blog and I noticed on Liz's blog for Nayeli that there are 4--count them FOUR--baby boys with CDH named Kaden. I have to be honest, it gave me a nervous feeling. THEN,I remembered what Liz had said and I decided to look up the meaning of his name again, and it does mean fighther/warrior!! NOW I understand the name choice, but we picked Kaden BEFORE we knew about the CDH....God really speaks to us every day in subtle ways! I just thought I would share....

Next Appointment at UCSF

2008-12-30T18:07:00.000-08:00

I got the call today and our next appointment is January 7th @ 10am. Please pray that we get nothing but good news...

Video Montage

2008-12-30T14:28:00.001-08:00

Make an on-line slide show at www.OneTrueMedia.com

How our Journey Began

2008-12-29T19:28:00.000-08:00

On November 14th, 2008, Craig and I went for our 18 week ultrasound knowing we would be able to find out the sex of our baby. Needless to say, we were very excited. I could tell almost immediately that he was all boy--you would have to be blind to miss that! I really thought that it was going to be a girl, but everyone else--especially Logan--always said it was going to be a boy. Once again, they were right---but I wasn't a bit disappointed, I was soo in LOVE with him already.

We had a weekend of complete bliss. We picked a name, Kaden Alex, spent all morning at Babies R Us registering, and I started to paint the nursery. It was Monday,I was painting (Craig was golfing) when I got "THE CALL" from the genetics counselor at Kaiser telling me that the radiologist found a problem with our ultrasound from Friday and it appeared that our son had a left congenital diaphragmatic hernia. She could not give me much information--what it meant, what caused it, how bad it was, etc., she just needed to schedule a level II ultrasound with the perinatologist in Sacramento. I made the appointment for that Wednesday, two days away, and was told that we would meet with her to discuss our options and then have the ultrasound and meet with the perinatologist to get the prognosis. She gave me her direct line and told me to call my husband and when he got home we could call her back with any questions.

It took Craig about 3 minutes to get from the 6th hole to our front door. Poor guy, I was such a wreck when I called him, he couldn't even understand what I was saying. I think he just got "there is something wrong with the baby" and immediately headed for the truck (with Jose--I ruined their golf game). He said he had such a hard time understanding what I was saying, he thought about calling an ambulance while he was enroute--I think he thought I had fallen or something had happened to me. That is the "cop" in him--he is always in "protection" mode! When he arrived, followed very shortly by Jose and then Naomie (I called her immediately after I called Craig), we called the genetics counselor to see, if now that there was a calm person in the room, we could get some more details and information on what CDH was. I didn't really find any comfort in the information that we got--the radiologist did not finish his report and it just stated that Kaden's intestines and stomach were in the left side of his chest and his heart was displaced to the right. She told us the prognosis was probably not good and we should think about termination. I told her termination was not an option for us and we would wait until Wednesday to see what the perinatologist could tell us.

Immediately, and I mean while Craig and I are on the phone, Naomie and Jose are on the internet looking up CDH, what it is, what it means, what the treatments are,etc. Those two were really my "rocks" in those first few days. Not for one second did they question that Kaden would beat the odds and be okay--they really encouraged us to remain positive. We then found out the UC San Francisco Fetal Treatment Center was #1 in the nation for treating babies with this defect, and the only hospital in the US that does a in-utero procedure called FETO (Fetal Endo Tracheal Occlusion). I knew we would ask for a referal to be seen by the specialists there, which the genetics counselor said Kaiser would do, if the perinatologist felt we were a canidate.

Those two days,waiting to see the specialist, I made all the phone calls, did alot of praying and crying, re-telling each of my family and friends about the diagnosis and getting NO sleep. Craig called in to work and took the week off to be with me--his office was so supportive and understanding. His Captain even called that day to let us know she would be praying for us and would be there if we needed anything. They have all been very good to us. We tried to go about our "daily" lives, whatever that means. We are very fortunate to have a very close circle of friends that we meet with every morning at Starbucks--every morning--and it was so difficult for me to go on Tuesday morning and face everyone, but I really needed their support. I always find unconditional love and support from them--always! I know I don't say it enough, but we really LOVE YOU GUYS!

Well, Wednesday comes and we are not given the best news. After doing some research before our appointment, I knew what to ask, what to look for, and what I wanted to hear. I knew that they would take what is called a "Lung-to-Head Ratio" (LHR) and the best prognosis was given to babies that had a LHR of 1.4 or more. That was the number I was looking for. Unfortunately, for us, that was not the number we were given. The doctor told us Kaden had a LHR of .2--VERY POOR PROGNOSIS--less than a 10% chance for survival. We were also told that he had a two-vessel umbilical cord, not the normal three vessel cord, and that it did not appear that his kidneys were functioning. I was devestated. I had done enough research to know that the CDH alone was bad, but if it presented with other abnormalities, the chances were very high that there was a genetic problem. They performed the amnio right there--we had to have a normal amnio to be seen at UCSF--and were told it would take 2 weeks for the results. We were in a total holding-pattern. It was Thanksgiving the next week and we had planned our yearly camping trip to the coast with the family and our RVing crew the "Cordelia Trailer Trash". We made the decision to go ahead and not change our plans and spend 10 days at the coast. Everyone was really understanding and didn't really talk about it, but I was so sad. We got home on Monday, Dec. 1st and I knew that they should be calling with the amnio results. And they did--they were normal!! My first glimmer of hope!

I was called by the genetics counselor and told that the Doctor had approved our referral to UCSF and that she was contacting them for a consultation--they would not see me until I was in my 22nd week (about 10 days away) and they would contact me directly. They called on Wed. the 3rd and scheduled me for Friday the 12th of December. It was going to be an all-day event! I was so excited.....until the genetics counselor called from Kaiser and told me that the nurse coordinator at UCSF said that the two-vessel cord would disqualify us for the in-utero procedure. I felt like I had been punched in the stomach! I knew that babies with a LHR of .2 would have NO chance for survival without the procedure. They recommend it for babies with a LTH ratio <1 and we thought that Kaden was on the severe end of the spectrum.

Well, we went for our appointment on the 12th, and aside from the traffic trying to get into the city, we got there without much stress. We went directly to ultrasound, and Dan, the sonographer, was great! It was amazing to get to look at Kaden for over an hour--and they look at everything... He just looked so perfect to me--I love him even more! From there we go to the fetal echocardiogram for the look-see at his heart. We spent over two hours there--Kaden would not cooperate and roll over for them to get a really good look at the left pulmonary artery so I was walking, drinking juice, jumping up and down--everything to try to get him to roll over. During this time, Dr. Lee, the director of the Fetal Treatment Center and the surgeon who would perform the in-utero procedure, stopped by because we were taking so long in echo and he had to get to surgery. He had gone over the ultrasound findings and wanted to stop in to let us know what they found. He told us that Kaden appeared to be completely normal--he had a normal three-vessel cord (not the two-vessel cord that we were told at Kaiser) and his kidneys were functioning normally--he even had a full bladder on the u/s. And his LHR was 1 to 1.2!! He said that we had about 4 weeks to decide about the FETO procedure, until the middle of January, but at this point Kaden was "on the fence" for even being a canidate. The risk for pre-term labor outweighed the benefit. And, we have the luxury of being able to do another ultrasound within that time to see if his LTH number had gone down. For the first time that day, I cried. We had been given HOPE!! I will cut to the chase at this point. After all the testing was done, we met with the case worker, and the specialist to go over the results and tour the NICU. Stephanie, our case worker, was great! They probably thought I was crazy--I am sure most mommies that spend the day doing what we did are an emotional wreck, but I was ELATED that Kaden was going to be given the best chance that we could offer him. For the first time in about 3 weeks, I thought I might actually bring home a healthy baby.

And that is were we are at on this day. I have gone back to enjoying my pregnancy and I have given it up to God. I know that He is with us in this journey and that we will learn alot about ourselves, each other, and we will meet alot of great people along the way. If nothing else, I hope our story will educate more people about CDH and treatment options--not just termination-- for mommies carrying babies with CDH.