Wordless Wednesday

Update on our CDH Warrior's

This is going to be a quick little update

Sophia is scheduled to have her third recurrence surgery today. Please keep her and her family in your prayers. This surgery will be more invasive than her previous. Pray that this will be her last and finally surgery.

Ruby is still on ECMO (lung/heart bypass). Pray that she will be able to be weaned off of ECMO so she will be able to have her repair surgery.

Jaime is scheduled to have his repair surgery tomorrow.

Thank You for keeping all of these families and their little CDH Warriors in your prayers as they fight this awful birth defect.


Where's Owain?
There he is!
Nothing like a little taste of Mr.Bubble.

Trying to take a picture of a 15 month can be some what of a challenge.

Especially with how the technology has changed since I was a kid way back when we used old school film cameras. Owain has learned that after I take a picture he can see himself on the little screen of the camera. With that said this is what I get every time I go to take a picture....

Needless to say I have quite a few pictures of him pointing at the camera.

This boy can talk!

Owain's language has really blossomed over the last few months. One thing that I know has really helped with his language skills is I have been teaching him sign language.

His very first sign was milk,then he started signing more and after a week of signing more he started saying more while signing it.I am so proud of my little man. :-)

Some of the other signs he use are:
thank You
all done
phone (he is a little obsessed with cell phones)

He is also known to say:
kitty cat
bye bye

Owain continues to amaze me.
He learns something new each and every day.
I can't wait to see what tomorrow brings!

10 Things I love about you....

1.)I love your laugh. It is so easy to get you to laugh all we have to so is sneeze and you think it is the funniest thing ever.

2.)I love watching your mind work while your trying to figure out how something works. I think you have an engineering mind like your daddy.

3.)I love it when you see a kitty cat or a squirrel you "meow" it is probably the cutest meow I have ever heard.

4.)I love your love for vacuums. Anytime you see a vacuum you make your vvvrrrmmm noise. Daddy bought you a vacuum that is just your size and you are so helpful by helping mommy vacuum. You even park your vacuum right next to mommies. :-)

5.)I love that you are very independent.You can easily entertain yourself if mommy and daddy need to get something done.

6.)I love your love for books.Every since you were a few months old you have been fascinated with books.We read to you daily.

7.)I love that your out going spirit. You will go up to any man,women and child and work your charm. You usually give a big smile and wave hello.

8.)I love that you are a momma's boy :-)

9.)I love your jumping skills. You don't actually get yourself up off the ground (yet) but it is so cute the way you swing your hands above your head,bend your knees and then you say "jump" as you through your whole body into a big jump.

10.) I love you for being you!

Happy fifteen months my little man!

The Begining of our CDH Roller Coaster Ride.

I remember so clearly the day I first learned about the devastating birth defect CDH (Congital Diaphragmatic Hernia).The birth defect that approximately 1,800 babies are born each year and 50% of babies born with CDH die.

It was a beautiful September day. The sky was a vibrant blue and the clouds looked like big fluffy white cotton balls.The sun was shining and the birds were chirping. I thought to myself what a perfect day for my ultra sound of our unborn baby. After all today was the day we were going to find out the sex of our baby! We were so excited!In all honesty CDH never crossed my mind. I was completely unaware,completely clueless.

Completely clueless that in this day our life's were about to change and we were going to be taking the ride of our life's. That no parent wants to take. The dreadful CDH roller coaster ride.

After my ultra sound we left still completely clueless. We were on cloud nine! We were having a boy! I know this news pleased my husband after all since day one he was so sure of himself that we were having a boy. He likes to be right ;-)

It wasn't until later. Fifteen minutes past seven my phone rang. I looked at the caller idea and did not recognize the number. I picked it up "hello" this was unusual for me on any normal day I would let it go to my voice mail if I did not recognize the number.

On the other end I heard my Doctor's deep Russian accent "is this Amber?"I immediately new that something was terribly wrong when I heard his voice. No Doctor ever calls you personally unless it's bad news.I tried to hold it together and he began to explain in his deep Russian accent. "that our baby boy was very very sick....this is very bad news" I couldn't hold it together tears began to roll down my cheeks. I had such a hard time understanding him between me sobbing and his deep Russian accent. The only thing I could make out was "Congital Diaphragmatic Hernia"

That is when our CDH roller coaster ride began fifteen minutes past seven, September 20,2008.

Between my tears I managed to ask my Doctor if he could please call my husband at work and explain all of this to him. I knew that I was a wreck and wouldn't be able to remember everything that the Doctor just told me. You know what that Doctor had the nerve to say "yeah but we need to make this quick I have been at work all day" WHAT? are you kidding me? I could not believe my ears. This is a man who just told be that our unborn baby is going to die and all he could think about is getting home to his wife and kids!

I hung up the phone. I never spoke to that Doctor again. Unfortunately my husband had one last unpleasant conversation with the Doctor. I would hear all about there conversation later in the mean time I collapsed to the floor and sobbed. Asking god "Why?why?why our baby?"

The most beautiful day was turning into a nightmare. I felt like someone just ripped my heart out and stopped on it until it broke into a million pieces. I only recall feeling like this one other time in my life and that was when my Uncle was brutally murdered.

At that very moment I felt alone. Alone with CDH.

Once I was able to pick myself up off of the floor. I went straight for my computer and googled Congital Diaphragmatic Hernia.That is when I began educating myself on this horrible birth defect. I found a few sites that were helpful and began to read stories of other babies born with CDH.

That is when I discovered we are not alone with this horrible birth defect. Many have faced the CDH roller coaster ride before us and many will face a similar ride after us.

In the middle of my research,in the middle of my tears I stopped for a moment to call my dad. Crying I explained to him what I just learned. He replied "oh hernia that's no big deal,lots of people have those they are easily fixed" Obliviously my dad has never heard of CDH. It was obvious he was thinking of a hernia not Congital Diaphragmatic Hernia. He was just as clueless as me.

I heard the sound of the front door open.

It was my husband home from work early. I leaped into his arms and cried, We held each other for awhile before he went into detail of his conversation with that Doctor. I was hoping and praying that maybe I didn't hear the Doctor correctly. After all he had a deep Russian accent that was hard to understand.Unfortunately I did hear him correctly our baby is very sick.He most likely will die and if he does survive who knows what quality of live he would have. That Doctor did suggest one option to my husband that he didn't suggest to me "we should abort our unborn son." I was floored! I couldn't believe my ears! I didn't even think that any Doctor would do an apportion at twenty weeks gestation.

After my husband went to bed I stayed up researching,crying,vomiting. Yes vomiting! This whole thing was making me sick! I didn't sleep a wink that night. I read story after story of babies who lost there battle with CDH after each story I would cry,vomit and get right back on the computer. I don't know if this was healthy but at the time this is what I needed to do.

Then I found hope. I stumbled upon Owen's story. He was born March,2008 with RCDH. At the time Owen was a happy healthy six month old. He was a survivor and born at Legacy Emmanul hospital.The same hospital where my Owain would began his fight. His story gave me hope. Hope is what we needed.

The next few months as we prepared for our son's battle for the fight of his life. We prayed and hoped that our son Owain would be a survivor.

You all know the out come of Owain's CDH roller coaster ride. We were fortunate that our son is a survivor and that is when survivors guilt kicks in.

The last fifteen months we have been blessed to have Owain in our life's. He brings us so much joy and I am so proud him. With everything he has been through. Three hospital stays,three surgeries it hasn't slowed him down.He is a happy little boy who loves life!

When I hear of a baby born with CDH die. It just breaks my heart and I ask God "why?why?"

Why does any baby born with CDH die?

I know that we can't erase CDH period and make it so no baby is born with this dreadful birth defect.That it is something that happens. Know one knows why? but it happens just as often as Spina bifida and Cystic Fibrosis yet know as ever heard of.

That needs to change!
We need to join together and help raise CDH awareness!

Wordless Wednesday

Warrior Kaden Alex Kuehl lost his fight against CDH

My heart aches for the Kuehl family.
After seventeen days battling CDH Kaden Alex Kuehl lost his battle.
Please keep his parents Craig and Kristi and the rest of his family in your prayers.

When your teething and feeling absoultly miserable...what is the best kinda medicine?

If you guessed Strawberry fruit juice Popsicle.
Your absolutely right!

This is what Owain thinks of teething....

Update: CDH Warriors

Our little CDH warriors are need of prayers!
Please join me in the power of prayer!
And pray for each one of these amazing babies and there families.

Believe. Believe. Believe.
In the power of prayer!

Happy Birthday Jaime!
Today little warrior Jaime was born and began his battle with CDH. He is stable and resting up for battle. Check out his blog and see some beautiful pictures of little Jaime and a special birthday picture for Jaime from his big brother Jared (nice work Jared ;-). It will melt your heart. I promise!

Keep fighting Jaime!
You can beat CDH!
Yes you can!

Ruby Hope was placed on ECMO(lung heart bypass machine) three days ago. She has had a pretty boring day(we like boring:-)Pray that Ruby will be able to rest up so her heart and lungs will be strong enough to come off ECMO and have her repair surgery.

Keep fighting Ruby!
You can beat CDH!
Yes you can!

Kaden Alex Kuel began his fight against CDH April 3,2009 his CDH roller coaster ride has been a bumpy one (very typical). As of today he his moving in the right direction so he can move on to the next battle field and have his repair surgery.

Keep fighting Kaden!
You can beat CDH!
Yes you can!

Charlie also known as Gumdrop has been in the NICU going on seventy-one days. The only thing that is keeping him from going home is bottle/breast feeding. This part can be very frustrating. Something simple like eating, can take weeks sometimes months for it to click.

It will click,Charlie!
You can do this!
Yes you can!

Sophia Miller I feel like I know her and her parent's Kenny and Jen I have been following Sophia's CDH journey for a little over year and praying for her. For the third time Sophia re herniated. She is waiting in the hospital for her third repair. Pray that this will be final!

We all know you can do this!
You have been there done that!
Your Super Sophie!
Yes you can!

Wyatt is another CDH warrior I feel close too. There is a possibility that he has re herniated for a third time.They are waiting for next week to run some more test (MRI and CT scan) to be 100% sure. Please pray that if he does have to have yet another surgery that this will be final!

Please keep these next families in your prayers.
They are preparing for battle for there little warriors.

Shawn,Stephanie and big sister Hollie are preparing for Kamryn's battle with CDH. Kamryn and her twin sister are due in June.
There CDH journey reminds me of another set of twins Olivia and Mason who recently have traveled the roads Kamryn and Brooke are about to embark on.

Kamryn you can beat CDH!
Yes you Can!

The Keirsey's are waiting for Avery Mae's arrival which is just around the corner May 15. They are preparing for the long road a head of them. Avery not only is going up for battle against CDH but she also has a heart defect.Please pray for Avery and her family.

Avery you can beat CDH!
Yes you can!

I remember the first meeting we had with Owain's surgeon. I was a little over twenty weeks pregnant and we were just learning what CDH is? One of the things he said"one out of three babies born with CDH will DIE."

Every time a baby born with CDH earns there wings it breaks my heart. My heart aches for each and every single one of them and there families. There is not a single day that goes by that I don't think about all the little CDH angels watching from above.

Joseph Carter Dejohn
February 3,2009-February 26,2009

Virgina Addison Accord
February 16,2009-March 11,2009

Maxton David Standifer
March 3,2009-March 21,2009

Ava Rose Daher
April 13,2009-April 13,2009

Thank You for taking a moment out of your day
to pray for our little CDH Warriors and there families.

Upside down Wordless Wednsday

Owain's first star sighting

"I see something it is big,fluffy and white"
"And it's coming my way!"
"look over there!"
"it's the Easter Bunny!"

"he is so cool"

"hey Easter Bunny can I have your autograph?"

Happy Easter!!!

Spring Break

Spring break Owain and I went on a little trip to Washington to visit family leaving daddy to fend for himself. We had a really nice visit. Beside Great Grandma and Grandma Outrageous the rest of the family hasn't seen Owain since last June. Boy oh boy has he changed!

Hanging out with Great Uncle Andy
Being Cheesy with Great Aunt Joyce and Cousin Kristen
Playing the big Piano
Great Grandpa Jones and MR.Smiles :-)
Walking to lunch with Great Grandma and Grandma Outrageous
Pickle for lunch...MMMmmmKisses for Great Grandma

Level 3 at Legacy Emmanual

Level 3 at Legacy Emmanual

About a month ago I came across this series of articles on my friend Darcy's blog. Her son Owen was born with RCDH and was born at Legacy and spent a month in the NICU a year before our little Owain would begin his fight at the very same hospital.

This series was published in 2003, before our boys was even thought of, before we even knew what CDH was or that babies get sick and sometimes die.

This is an amazing series, I urge you to read it. I am posting about it here in particular because I know some of you who read this also had a CDH baby at Legacy and would love to read more about this amazing place and the fantastic nurses who work there. Also, some of you have or are expecting a CDH babe, this gave me quite a good (if intense) view of what goes on in a Level 3 unit from the nurses perspective.

The series: Fighting for life on Level 3

On the above page there are also links to some related stories as well as a photo gallery that goes with each article.

So when you have a moment, grab a box of tissues and get a little glimpse of this little world that we were a part of while and will never forget.

Dacy thank you for sharing these articles I found them to be very interesting and boy did they bring back a lot of memories. I also new that it takes a special someone to be a NICU nurse and these articles really bring it into perspective.


Last Tuesday Owain had his final Physical Therapy appointment. Since he was two months old we have been taking him to Physical Therapy about every three to four months. We have been pretty blessed with his progress.Each time his Physical therapist was very pleased with his progress. This time she was very impressed. Owain WOWED her!

His fine motor skills:
Grasp are at a 15-19 month level
Visual/spatial: 16 month level
Gross Motor:
Balance: 14-17 month level
Locomotion: 15 month level
I am one proud momma! With every thing he has endured it has not slowed him down. We are very blessed and thankful each and every day for our little man. He continues to WOW us!!!!

During his Physical Therapy appointment he did get really distracted. As soon as he saw the little dirt devil he was in vacuuming heaven and wanted nothing to do with any other toy.

My boy loves to Vacuum. His a little obsessed. He even makes his own sound effects when vacuuming. It is really cute. I have a video I will try and post soon.
At home Owain loves to vacuum too. Even though he doesn't have a fancy dirt devil we improvised by letting him vacuum with the hose to our vacuum. He loves it!

The Beach!

Were going to the beach.

Were gonna play in the sand.

Were going to listen to the waves of the Ocean roar.

Were going to find our very first sand dollar!
and try a little taste...
MMMmmm...a little sandy.Not so tasty.Sand in the teeth not so cool...sand in between the fingers...pretty cool!
Here mommy...you gotta feel the sand!
Yeah for the beach!
Yeah for the sand!
Yeah! for Fun!Fun!Fun!
At the beach!