Our family's journey through life

Please pray for baby Wyatt he is in the hospital recovering from his surgery. He reherniated and he is doing good considering every thing he has been through.Wyatt is a true warrior.

Today I leave you with a picture of Owain having a little snack. We are getting ready to go on a little road trip to Eugene or should I say I am getting us ready while daddy catches up on his sleep and Owain plays. I thought I would be all packed and ready to go last night. I should know me by now that I always wait until the last minute. We are looking forward to spending some quality time with family and friends. We will be back sometime Monday.

Have a happy labor day weekend!

The other day Owain was playing in his excersaucer having a ball when he noticed that mommy was drinking out of a very colorful glass. He immediately was interested in what mommy was doing. As I took a drink his eyes got with big and he started to smack his lips (he does this any time he sees mommy or daddy eating). Then he started to make grunting noises. I decided to let him explore my glass. He tried to pick up my glass (it was a little heavy) and with the help from mommy he was successful. This was Owain's first time drinking out of a glass and not his bottle or his sippy cup. He is such a big boy!

Baby Catherine is another baby born with CDH (Congital Diaphragmatic Hernia). She is currently on ECMO (lung,heart bypass machine) Please pray for Catherine and her family while they begin their CDH roller coaster. Her mom started a blog called letters to Catherine. It's a unique way of journaling Catherine's journey that one day Catherine will be able to read the letters her mom wrote to her. Her Aunt also has a blog here.

Elliot is a week old and she is currently stable on ECMO (a lung ,heart bypass machine). The plan is to do her repair surgery this Thursday on ECMO. Their are a lot of risk doing the repair surgery on ECMO but with or without ECMO their are always risk with any surgery. Elliott won't be able to began her road to recovery until she has her repair surgery and the Surgeons feel it is best for Elliott because her defect is fairly large it will be in her best interest to do the surgery on ECMO.

One baby comes to mind when I hear of a CDH (Congital Diaphragmatic Hernia) baby having to have their repair surgery on ECMO is baby Jack. If I recall correctly after his repair surgery he was completely weaned off of ECMO! Jack just celebrated his first birthday and he is doing great! I love to hear of other CDH success story like Jack. I know that every CDH baby is different and just because one is weaned off ECMO during surgery doesn't meen another CDH will be too, but reading Jack's story gives me great hope for baby Elliott.

I am asking all of my fellow readers to please keep Elliott and her parents Brian and Cassi in your prayers and pray extra hard this Thursday that the surgeons and nurses will successfully repair Elliott's hernia and she will remain stable and hopefully soon Elliott will be strong enough to be weaned off of ECMO.

Thank You

One of Owain's favorite things to play with are his blocks. They are really cool they came in a easy to carry plastic box and each block is different. They are clear and inside each of them has a different sea animal in them. He loves them so much every time he see them he gets real excited and starts making his little grunting noises. The first time I introduced him to the blocks he was so determined to pick one up and put it in his mouth. Yes his mouth,what else would he do with his blocks? It was easy after all he was on his tummy. He spent ten minutes of totally concentration and then finally he achieved his goal. He picked up his block with both hands,without dropping it and successfully tried to shove the whole thing in his mouth. Now that he has figured out how to pick them up he can do it one handed! Here are some pictures of Owain playing with his blocks.

Today Owain had a appointment with the eye doctor (I will go into more detail) but first I will tell how daddy saved the day.

Owain's appointment was bright and early and it was on the other side of town. Living in Portland we had to give our selves an hour to get to his appointment just in case with morning rush hour. With that being said I woke up with Owain around 5:30am. With only five hours of sleep I was pretty tired. We had two hours until we had to leave. I figured their was no point in trying to take a little cat nap. I still had to get myself and Owain dressed,feed him,give him his morning medicine and pack the diaper bag. Oh and wake up daddy.Sometimes I fell like I am running around the house like a mad women trying to get everything ready in order for us to leave the house.

After bringing Owain home from the NICU I feel like I am getting a pretty good system down. For just a day outing I no longer pack the big diaper bag that feels like I am toting a suitcase! After a few months I realized I was over packing half the stuff in our giant suitcase diaper bag we never used. So I downsized and started to use a much smaller bag.

Up until today I never forgot a single thing that Owain might need during an outing. Yes I forgot the one thing I new Owain was gong to need ASAP. His formula! I can't believe I forgot his formula. I remember his bottle but no formula. I felt horrible and I new it was only a matter of time when Owain would want his bottle. Since it has been nearly three hours since he last ate! We were still waiting in the waiting room and I really did not want a tired,hungry baby while his Doctor tried to examine him. With no bottle with formula to give him. I had bottle with water but I don't think water would satisfy a hungry baby.

This is were daddy saved the day! He went to the other side of Kaiser to the pediatrics and asked if they had any formula to spare and they did! Woohoo! They gave him several samples of the same formula Owain drinks. Thanks to daddy we were able to feed Owain his bottle and he was happy during his appointment.

Your probally asking why we had to take Owain to the eye doctor? We were a little concerned because we noticed that Owain's right eye was a little lazy and the pupil was a little more dilated than the left eye. So we thought it would be good idea to get it checked out. The doctor took a look at Owain's eyes and they look great. She said with his pupil being a little dilated is normal. Now you can't even tell his right eye was a little lazy(we made this appointment a couple of months ago) so it is already started to correct it self. We were happy to hear Owain's eyes look great and as of now he doesn't need glasses.

My sweet little boy

Happy seven month birthday! You light up my world. I am so proud to be your mommy. Everyday that I have with you is a true blessing. I couldn't imagine what life was like before you entered this world.

Everyday you amaze me with your determination. When you are determined to reach something that is out of reach you don't give up easily. You get these great big bug eyes and keep going for it until you have whatever it is that you are trying to reach. Sometimes it's one of your toys or the candy dish or maybe daddy's beer. I know once you take your first step your going to be getting into everything!

Seems like overnight you are now scooting on your tummy and rolling all over the place. I am so proud of all the big and little milestone you achieve.

Now that your a big boy you love your big boy food. When ever it's time to eat you get real excited and start making grunting noises. If your real hungry and you see me making your food you loose your patience and began to let out a few cries.

I am looking forward to to see what the future has in store for you and know matter what mommy will always be here for you.

I love you!

Hugs and Kisses

Mommy

A few weeks ago Eric had a little photo shoot with our little man. He got some really great pictures of Owain. Here are some of our favorites. Isn't he adorable? I am a little bias being his mommy and all but don't you agree? He is pretty dang cute!

I really like this one Owain is coughing in this one and daddy took the picture and got a great shot!
Our future Soccer ball star!

William Ethan Morgan was born August 19,2008 and lost his battle with CDH (Congital Diaphragmatic Hernia) August 20,2008 with his parents Matt and Heather by his side. My heart goes out to his family at this very difficult time.

"now that you have your wings little Will fly high free of pain"

Elliott Arcile Reed was born today the 19th of august at 2:58 pm!!
She weighs 6 lbs 8 oz and is 19 and 3/4 inches long. And doing fine good so far.

Please pray for Elliott and her family as they begin this crazy CDH roller coaster ride.

Thank You

Check out the Reeds blog

Yesterday was a special day that I have been waiting for since last November. Most of you (family and friends) have heard me mention Owen and his family at one time or another.
If you haven't heard me mention him now I will fill you all in.

Way back last September the night of my twenty week ultra sound when our baby boy was diagnosed with left CDH (Congital Diaphragmatic Hernia ). I didn't sleep a wink that night. Instead I did has much research on the internet to learn everything about CDH. I never heard of this birth defect and I was terrified of the unknown. In the mist of my research I came across Owen's story who was born March 2007 with right CDH. I was completely in tears after reading his story. Knowing that my baby boy is going to have to face similar obstacles. At the same time his story gave me hope. After reading Owen's story I left Darcy (Owen's mom) a short message that my baby was just diagnosed with CDH. I didn't think I would hear back from her but I did! The very next day she emailed me. That email meant so much finally some one to talk to that knows exactly how I am feeling. Someone that has walked in my shoes and has the happy ending I am hoping we will have.

Darcy and her family were so kind to invite my husband and I into their home so we can meet Owen. So in November we jumped into the car and drove to their home (they only lived a couple of hours away). They both were incredible. They shared their story showed us pictures of Owen while he was in the NICU (the same NICU I planned on having our son). The best part of our visit was meeting Owen he was seven months old and looking at him you would never know he had such a rough start. He was full of smiles and looked like any other seven month old (only cuter and braver).

I left having even more hope for our baby and I was so incredible thankful that the Owen and his family walked into our life's. Thanks to google!

The rest of my pregnancy I prayed that our baby boy would fight hard and that we would get to bring him home healthy and that one day we would be able to get our two boy's together. I am happy to report that my prayers have been answered. If you have been reading this blog you know Owain is happy and healthy. Yesterday we meet the Owen and his parents at the same hospital were both boy's were born and fought for their life. It was wonderful to be able get together and have our happy ending. When this crazy CDH journey began I never thought in a million years that I would have made life time friends but I did. I will always be thankful for Darcy and Danny opening their arms to us. I am looking forward to getting our families together in the near future.

Thanks a million Darcy,Danny and Owen family! You guys rock!

Here are some pictures of our little get together.



For those of you that don't know when we found out we were having a baby boy we were having a big disagreement on what his name should be. At the time I liked Kaden and my husband liked Cadmen (I'm not sure if I spelled that right.) After reading Owen's story we both really liked the name so we decided Owen it will be except we will make it our own and spell it Owain. That is how we named our baby boy after Owen.

Friday Owain's Grandma Outrageous came for a visit. For those readers that don't know who Grandma Outrageous is. She is my mother and no her name is not Outrageous her name is Angela. How she became Grandma Outrageous,you ask? Well it all started with my four year old nephew Isaiah. He started calling her grandma outrageous and it kinda stuck.

Anyways Friday it was so hot and sticky. It was in the triple digits!! So we decide it would be a perfect day to go the mall and take advantage of their AC. I am not a big fan of hangong out at the mall but it was quite pleasant on a day like today.

Owain was pretty tired he fell asleep in the car and I thought for sure he would sleep in the stroller. Boy was I wrong their was to much to see. It was Owain's first time at the mall and he wasn't going to sleep not for one minute he didn't want to miss a thing. Considering how tired he was he was happy as can be. I love that about my little man overall he is really happy. He does have his moments but not to often.

The picture below is Owain with grandma in Scamps looking at the fish.

Here is an up close picture of Owain looking at the fish. Look at those big eyes. He is so curious about everything. Another thing I love about him is his curiosity.
While hanging out in the mall we went to Ross and I found a great deal on a Baby Einstein Jumper. It was only $37.99. I thought that was a great deal. I have been wanting to get Owain a jumper for a few months now. We don't have a place for one that hangs in the doorway so I thought this one would be perfect. I even looked on Craig's list for a used one and they were priced anywhere from $40-60. I thought that was to high for a used one. So when I saw this one I had to jump on it. When I told Eric later that I had to jump on it. It was such a great deal. He said "you probally shouldn't jump on it you way more than 25lbs." 25lbs. is the weight requirement. Their he goes trying to be funny again!

After Owain went to sleep for the night grandma and I opened the box to put it all together. Their was a million pieces. Well probally not a million but it seemed like a lot. It was a little overwhelming.Here is a picture of all the pieces. Once we got to reading the directions it was actually a piece of cake to put together.
Grandma figuring out what goes where.
The next morning we put Owain in it and I think he liked it as you can see by the picture below.

I found this on my friend Darcy's blog (Owen's mommy) and I wanted to share it with my readers I think this is absolutely ridiculous!

There is currently an organization that has filed an application for trademark ownership of the phrase “Congenital Diaphragmatic Hernia Awareness”. This means that anyone (an individual or an organization) who wishes to use this phrase or its likeness, must receive permission from this organization before using it or risk being sued. While this organization has done a lot to raise awareness and show support of some families who have suffered from CDH, I think that a trademark of the phrase is irresponsible and ultimately will work to decrease awareness of CDH.

For me, this means that I would need to have special permission to have the description that is currently listed at the top of my blog or links to information about CDH Awareness. In my opinion, this is absolutely ridiculous; you cannot own a defect or awareness of it. For so many families who have suffered because of CDH, helping to raise awareness about this little known defect has become a personal passion as a way to help heal and grieve in a healthy manner. This trademark would make that difficult or impossible for so many, at the same time limiting awareness, rather than helping to spread it.

No one owns Breast Cancer Awareness or Cystic Fibrosis Awareness, it just doesn’t make sense that an organization could own CDH Awareness either. Even if awareness is part of a campaign, it doesn’t need to be trademarked. The goal is “awareness of a defect”, not “awareness of a defect by individuals associated with a particular organization.”

If what I have said makes sense to you and you agree, would you please sign an online petition stating that? This trademark application is currently before the U.S. Patent & Trademark office for review so the sooner that you sign, the better. There is also an option to sign anonymously in case you would not like your name available for privacy/security reasons. Here is the link to the petition with more information. If you have any questions, please don’t hesitate to ask me. Also, please feel free to forward this to anyone that you think may be interested.

My goal is not to be divisive about this issue or in regards to this organization. My goal is to keep “CDH Awareness” available to all of the many families and individuals who have suffered because of this defect and who wish to work towards educating and supporting people who face this diagnosis and its many effects.

http://www.ipetitions.com/petition/cdhawareness/index.htm

I took this picture of Owain today and I love it! He is to cute trying to grab mommy's camera.

Yesterday I let Owain feed himself his apple sauce. I think he really enjoyed himself as you can see by the pictures. It was a good thing it was bath night because by the time he was done he had apples on his head and all the way behind his leg.How the heck did apples get all the way there?

I love the top picture Owain with his
cheesy grin. I love that grin it just
makes me want to pinch his cute little
cheeks.


Exploring his toys.

How could you say no to that face?

Look at my big boy! Sitting up all by himself
with the help of his arms holding himself.

Aunt Erin thank you for all the cute clothes you sent me. I wanted to eat them but my mommy said "clothes are not for eating, they are for wearing"Oh man! She never lets me have any fun!
In case for those readers that don't know Aunt Erin is my mommy's best best friend who lives in Arizona. I can't wait to meet her. I bet Aunt Erin would let me have some fun! She probally sent me all these yummy clothes so I can eat them, right Aunt Erin?


MmmMmmMmm....just a little taste.


Thanks Aunt Erin your the best.
Mommy sends her love!
XXXOOOXXXOOO

Today my girlfriend Whitney and I thought it would be a good day to take Owain swimming for the first time in our pool.It was almost hundred degrees...yuck! So the water sounded like a great idea. Owain seemed to really like it. I wasn't sure how he was going to handle the cold but he did fine (as long as his waist wasn't all the way in the water). The cold water felt fabulous I think we are going to have to go swimming again real soon as long as it continues to be hot..hot...hot!

Here are some pictures of Owain trying out his new sippy cup. We started giving him a sippy cup about a week ago with his solid food. I think his starting to get the hang of it.

Yesterday Owain had his third outpatient appointment with his Surgeon Dr.Zigman. I feel incredible blessed to have this man in our life. He is truly gifted Surgeon and I honestly belief our little warrior wouldn't be here today if it wasn't for Dr.Zigman.We love you Dr.Zigman!

The appointment went great! Dr.Zigman was thrilled to see Owain doing so well. As a Surgeon I bet the best part of the job is seeing your patients recover and thriving. He is so good with Owain. You can tell he as a love for children. While he was examining our little man he was able to get a few smiles out of him. Which doesn't happen to often when Owain has an appointment with his Pediatrician. He screams the whole time unless mommy or daddy is holding him. Don't get me wrong we like Owain's pediatrician but Dr.Zigman has a special way with Owain he makes silly faces and talks to him. He makes him comfortable.

No big changes that need to be reported. Owain didn'tt need to have an x ray because he had one three months ago. In three months when we see Dr.Zigman again we will have another x ray.
His lungs sounds great! Woohoo! He still is going to continue to take Omeprazole (for reflex). Overall Owain's reflex is under control he will have a few days without any reflex and occasionally he will have a big case of reflex(like my last post) because of that Dr.Zigman thinks it would be a good idea to keep him on it for a few more months. I think thats it to report. Owain is a happy healthy six month! Typing that is like music to my ears at the very beginning of this crazy CDH (Congital Diaphragmatic Hernia) I didn't know if I would ever be able to say that. We are so incredible blessed to have Owain's health.

After Owain's appointment with Dr.Zigman we stopped by Dr.Friedman's office (my perinatologist)It was a bitter sweet moment being able to show Owain off to Dr.Friedman and the Nurses. For months Eric and I felt like we lived in his office having appointments every two weeks. Dr.Friedman is another Doctor that I love. Him and his staff are amazing they helped us get through some very difficult times and gave us hope for our unborn son.