Good bye February...hello March

by Amber
Less than three hours left of February 2010 will be a thing of the past.Here we all go moving forward into March.Is it me or is time flying  extremely fast? I feel like it was just yesterday we were all partying like it was 1999 bringing in the new year. Excited and anxious to see what was in store for  the Millennium and now it's been a decade.Seriously time could slow down just a tad.

We had an amazing low key weekend. Saturday I met up with one of my really  good  friends Renee' we caught up on the latest happenings in each others life over onion rings and a sturdy John .Get your minds out of the gutter you all a sturdy John is my favorite grilled sand-which at the Truffle Hunter.Simple yet amazing. Grilled ham and cheese with their special sauce (not sure what's in it but it is tasty) on homemade bread That's what makes this grilled cheese spectacular and unlike any other grilled cheese the bread. Later in the evening we had our new friends Jenny,Seth and their two adorable kiddos Elijah 4 and Haya 2 (same birthday as Owain they are destine to be the best of friends spouses). We chowed down on Eric's pulled pork tacos over a glass of whine. The kids  dumped out just about every toy in the house apartment.Us grown ups managed to have a delightful conversation over the commotion. It was rather lovely. Looking forward to more get together s with our new friends.

My plans of laundry folding and cleaning quickly changed when we woke up Sunday morning to a glorious sunny day.We spent most of the day light playing outside,Owain drove his front loader to the "rock park",we played in our eyeless turtle sand box,walked to the park and for the first time ever Owain was brave enough to go down the slide all by himself! I learned that my best friend in the whole world is pregnant with her first baby.Congratulations Erin and Stew I am literally jumping for joy with tears in my eyes full of happiness for you guys!It was really a low key amazing weekend.Good times and  a Good ending to the month of February.
I learned that my best friend in the whole world is pregnant with her first baby.Congratulations Erin and Stew I am literally jumping for joy with tears in my eyes full of happiness for you guys!It was really a low key amazing weekend.Good times and  a Good ending to the month of February.

With tomorrow being March you only  have 31 days to order your CDH awareness shirt sewn by the lovely and talented Cindy The shirts are reasonable only $20. and 50% goes to the Parker Reese Foundation.



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impatiently waiting....

by Amber
A couple of  weeks ago I felt at peace with Owain needing to have yet another repair surgery.I felt at peace(still do) and thankful that his current situation is not life threatening. This way the Doctors have  more time to come up with a better solution to prevent this from ever happening again.Crossing my fingers.Praying.Hoping.

Today this week right now I am feeling impatient. I want to get this show on the road.The longer we wait for our little man to have his fourth and finally surgery (crossing my fingers.praying. hoping) the more anxious and impatient I am. We still don't have a game plan. We still don't have a surgery date. We are still waiting.....

Yesterday I called Dr.Z's office (Owain's surgeon) hoping to hear the game plan. He is still waiting to hear back from the Senior  surgeon. Two weeks ago after the CT scan and it was determined that Owain has had another recurrence he sent all of his medical info to him.We are still waiting and so is Dr.Z. We are all waiting for the Senior surgeon to get back to all of us .Senior surgeon is not his name.I haven't had the pleasure of meeting him yet.I am sure he is one of the best of the best since he works with Dr.Z and all. but I am getting impatient. Tired of the waiting game.I hate the waiting game.I don't want to play anymore! Ready to get this show on the road!

I am still at peace with Owain's current situation. He is still eating well (for Owain) making lots of BM and is a wildly  active little boy. Showing no signs of discomfort. Having no problems breathing. We are so thankful.
Impatiently waiting that's what we have been doing....
waiting to hear the game plan....
waiting to know when his surgery will be....
waiting and waiting and waiting....
but even with all this waiting and uncertainty we are still at peace and confident that the team of Doctors will be able to come up with a better solution.Crossing my fingers,Hoping ,praying we will have a game plan next week.Then we can finally get this show on the road!

While we wait we have been....
going to the Library for music and story time...
decorating sugar cookies   eating frosting....
On dry days playing at the park....
and having play dates...
Life is good.
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Not Me! Monday!

by Amber




Last night leaving the grocery store I didn't jump for joy when I saw a group of girls wearing green. I didn't already have my money out and ready to exchange for my all time favorite girl scout cookies Samoas. As I made the exchange  I didn't feel guilty that I was buying cookies when I know a local girl scout (Mina I will be calling your mom soon.) Half way through Monday I only have three samoas left. Nope not me!

I finally bought a pair of  skinny jeans so I can wear my boots and be some what fashionable. Realizing once I put them on they are the kinda jeans if your not careful you end up showing the whole world your crack This morning getting ready to head out the door for story time I did not say "I need to go put on a longer shirt.I don't want everyone to see my crack" My two year old pride and joy did not say this while skipping down the hall  "momma's crack momma's crack momma's crack" Thankfully by the time we got to story time he forgot all about momma' crack.

I did not just eat another Samoas cookie. Nope not me!

While I hurry and get my Not Me post together I don't hear my two year old talking away on the baby monitor while he is suppose to be napping. Not my little man!

Monday is not over yet. It's not to late to join in the Not Me! Carnival.

I am not staring at my very last Samoas contemplating to eat it now or later?
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make a wish

by Amber
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Way to go! Grandpa Bob!

by Amber
   


Back in October ( I know I know I am a huge blog slacker.  Better late than never) grandpa Bob (my dad) raised a little over seven hundred dollars for March of Dimes. I am so proud of him! Way to go Grandpa Bob! We love you! In case you didn't know March of dimes raises awareness  is the leading non profit organization for pregnancy and health. They are dedicated to improving the health of babies by preventing birth defects,premature births and infant mortality. Way to go grandpa Bob! you rock!   

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peace

by Amber
flash back
Febuary 4,2008
level 3  NICU Legacy Emmanual Hospital

Was a heart wrenching unforgettable blurry day. Owain was only ten days old and  very sick.I remember sitting in a cozy recliner (Lily's chair, a sweet baby who died in this very NICU who's parents donated the chair in honor of their sweet angel)right next to my baby's elevated bed.  My nose was red and raw from the non stop tears rolling down my cheeks.I was an emotional mess. Today was suppose to be the day Mr.Owain was going to be getting his repair surgery.It was canceled again! His third scheduled surgery He was too sick. My heart sank. I had so many emotions running through my head is this it...is the unthinkable about to happen? am I finally going to get to hold my baby for the first and last time? please god let him live he is so loved let him live.please. 

The Doctors were preparing us for the worst."if his blood gases don't improve soon he will need ECMO" (ECMO lung heart bypass machine). I was in a complete fog  with tears in my eyes I  signed the yellow release form for ECMO. Please god not ECMO.Let him live.Let him be strong enough so he can have his repair surgery and heal.please. I begged to god. I am not even religious but on this day I prayed hard for a miracle. Let my Mr.Owain be a CDH survivor.

Shortly after signing the release form a warm kind spirit Penny ( the hospital chaplain) graced us with her presents.We (family)  gathered around Owain's bed.My husband and I gentled placed our hands on our sweet boy's head.More tears streaming down my cheeks. I was trying to keep it together.It wasn't working I was a hot mess. Owain was in the middle of the circle of love.As Penny blessed him....

Great God,Giver of this gift of life
that form in love between a man and a woman
you who knit together cells
into an intricate design,
unique in the universe,Owain
You,Breath of Life,Grace itself and Mercy,too.
Turn now Your parent-heart
Upon him healing.
Upon him,flow mercy.
Upon his parents,flow strength and courage.
Upon his family flow hope.
Upon his nurses, doctors flow loving excellence.
You,turn now Your face to us and bless us.

At that moment I didn't feel courageous. I was petrified that the unthinkable was about to happened. I felt hopeless. I just wanted my baby to heal.To be healthy, I wanted to be able to hold my baby and never put him down.  I wanted him to have a chance to live. I wanted to bring my baby home.This is not what I imagined motherhood would be like.Why is this happening to us?  why our baby?why?

Our prayers were answered. Owain's weak body began to get strong enough to have his repair surgery at seventeen days old.His body began to heal.He avoided ECMO.He wowed the Doctors.They couldn't be leave the 180.They stopped preparing us for the unthinkable. Now they were preparing us to bring our baby home!Owain is a CDH survivor.He beat the odds.thank you god! thank you god!

It's crazy to think of how far our little man as come and how far we have come as parents.I am so proud to be his momma. and I am at peace with this fourth unexpected surgery. Owain is no where close to being in critically condition. He is full of life.Running jumping,playing eating and making lots of bowel movements (very important when some of your bowl is poking through your diaphragm)He is doing remarkable considering.Because of that his surgery won't happen for another couple of weeks. I hate waiting but am at peace with it. This will give the Doctors more time to study Owain's case and find a better solutions.We have more time to prepare Owain for another stay in the hospital.(We have been reading him a book about a boy in the hospital.) So not looking forward to that.I would rather go to Disney Land but I am at peace with this situation.At least this time we feel more prepared than his last hospital stay at nine months old (2&3 recurrence)
He kicked CDH booty not once,not twice three times already.I have full confidence he will do it again. after all he is a warrior ready for battle.
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Project Life Tuesday

by Amber

This year I am really going to commit to project life. Last year I only made it two months. Sad I know. Something tragic happened and I fell behind and never continued.  I really love the concept of project life.Take a picture everyday for one year then at the end of the year you have a lovely scrap book of your life for the year. This year  I will commit to finishing project life.Yes  I will! Even though I am already a few weeks behind ( I started the 25th of Jan not the first) I am not going to give up.

Sunday February 6
We spent the early part of the day at the park. Owain loved rocking on the sea horse. After the park we played at the local toy. They have a train table that Owain  loves to play with.





Monday February 7
We went over to Papa's for dinner and Papa made Owain a special chocolate milk shake. After dinner we played hungry hungry hippo (a favorite of Owain's when were at papa's).It was the first time over since Daisy (family dog) passed away. We missed her presents. Even Owain asked "where daisy go?"

Tuesday February 8
We did our usually Tuesday thing and went to the indoor play ground.While saying goodbye to our friends Elijah and Haya both gave Owain a hug. It melted my heart.  

Wednesday February 9
Owain and I went over to our friend Julie and Eric's house for a play date the boy's had a lot of fun being little monkey's jumping on the bed. Our friend Avery and her mom were there too but it was  impossible to get a picture of three toddlers.


Thursday February 10
. Owain got a kick out of riding the bus to story time after all he is obsessed with all public transportation.Before he ever said "I love mommy or daddy" he said "I love bus"

Friday February 11
We had to take Owain to Doernbecher to get a CT scan to find out if he had another recurrence (he did) getting the CT scan was not fun at all but getting to ride the Tram twice made it all worth it.


Saturday February 12
We went over to grandma's and she had a very special Valentines for Owain. Three Thomas books!  Owain is Thomas's #1 fan. If you couldn't tell be his reaction.



Head on over to Jessica's if you want to scope out other's Project Life. It's never to late to start your own!




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by Amber
Just like daddy...

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Not Me! Monday!

by Amber

I may or may not of eating almost not quite a whole box of Oreo cookie in a matter of three days. Oh heavens not me!  I don't indulge in  sweets when I am under enormous amounts of stress.Not Me!

When my husband came home with a dozen red roses hidden behind his back I did not act surprised. I kinda could tell he was up to something with his devilish little grin and one hand behind his back. Even though we haven't celebrated this silly hallmark day in years. A couple of Valentines ago we agreed we  wouldn't participate  no more.Why? When we could be each others  Valentine any day of the year. I really have an amazing husband. Love you babe.Happy Valentines day today,tomorrow and always....365 days a year....

My little man (a..k .a Owain my first and only born) would never throw his whole entire plate of mac and cheese. Not my little man.While cheesy noodles fly to the ceiling before hitting the wall some sticking most landing on our carpeted dining room.I hear an almost devilish laugh "heehaaaheeehaaaaaa...it crashed mama" I had him help me pick up the mess instead of putting the now dirty mac and cheese (I have 2 cats and carpet!) back on the purple plate like I asked instead he began to eat it.I didn't just sit there and watch while he continued to eat pieces of mac after another. I would never let my child eat off of our hairy carpet. Oh heck no not me!

While driving with my two men ( me sitting in the passenger sit enjoying the view of the city traffic husband driving,little man safely buckled in the back seat) I wasn't a little a lot hurt when my little man blurted out " I loooove buuuuss" We have been trying for weeks now to get him to say I love mama or  I love dada. We would have been pleased with either one but no he love's bus. My feeling were not hurt at all I mean who doesn't love public transportation A few days later he did not confess he also loves MAX (Portland's commuter train).

Our new kitten is not really a dog trapped inside of a cute gray and white striped  six month old kitten. I have never walked in the bathroom to find a cute little kitten drinking out of the toilet. That would be gross!After ward  he would never try and give me kisses with his wet face eeeewww that would be double gross. His favorite game is not FETCH! My kitten is not really a dog trapped inside of cats body.

This is not a picture of our dog tapped inside of a kitten chill'in in my sock drawer and you don't see at least a dozen mis matched socks. I am not an unorganized person  I always have each set of socks matched,rolled neatly into a ball sorted by color. That's how  I roll.

Head on over to Mckmama's and join in the fun of Not Me! Monday!
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by Amber


Can you guess what we got to do last Friday?

While at Doernbecher Children's hospital we got to ride this....

not just once but twice.

Riding the Tram really made a difficult day into a fun day.
Especially for one terrific two year old boy.
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Questions and Answers

by Amber
When is Owain's repair surgery?
Dr.Z ( Owain's surgeon) will be meeting with several other surgeons Monday to discuss his unique yet challenging diaphragm. Hoping with a team of surgeons brain storming,researching the best solution for our little man. Three gore tex patches aren't working. Their are other options other than gore tex maybe they will choose to use one of the following latissimus dorsi flap ,alloderm patch or use abdominal muscle to create a diaphragm or maybe some thing else. It is reassuring to know that there are other options other than gore tex. I feel confident in the team of Doctors that they will be able to find a better stronger solutions to repair his hernia so this will be his last surgery and re herenate will be a thing of the past.Once the team of Doctors have a game plan, Dr.Z will give us a call Tuesday or Wednesday to inform us of the plan. As soon as we have a date for surgery you will be the second to know.
How was Owain's recurrence discovered?
A little over two weeks ago we had a follow up with Dr.Z. He ordered Owain's last scheduled chest x ray. We got the thumbs up everything looked as though it did on Owain's last x ray back in September.It wasn't until later when Dr.Z went over his x ray he noticed that it looked like he might have another recurrence. We are so thankful that Dr.Z is a good thorough Doctor.He wanted to triple check so we took Owain for an ultra sound. Because of the uniqueness of Owain not having a spleen and a high kidney it was difficult for the radiologist and technician to determine if in fact he has another recurrence.The next day (last Friday) Owain had his third CT scan. A few short hours Dr.Z called to inform us that yes he has had another (his third) recurrence.
Is Owain in any discomfort?
No. Looking at him you would never know that he has some of his bowl poking through one of the three gore tex patches. I think the bowl might be poking through where they tied the patch around his ribs but I am not 100% sure . We will learn more next week.
Our little man has been his energetic happy self. Wresting with daddy,jumping off the couch,running the cat over with his dump truck Just being a typical two year old boy.Boys are so much fun. We are enjoying every minute of him bouncing off the walls.That is a really good sign that this recurrence is no affecting him physically. Any one that knows us know's our daily struggle with him eating well since he recovered from his viral infections a few weeks ago he has been eating pretty darn good for Owain and having plenty of BM (bowel moments) another great sign that every thing is working even though it may nor be in the correct place.


How long will his hospital stay be?
You never know. Back when Owain was diagnosed in utero (20 weeks geatation) we were told the average stay for a CDH baby is three months.When we brought him home from the NICU he was six weeks old. At nine months he had two more surgery's and he only spent six days in the hospital.You just never know. Hoping and praying that his will be a short hospital stay. With no complications,no crazy twist and turns while we board the CDH roller coaster ride,again.If I have learned anything from CDH it is to expect the unexpected. You just never flip'in know.Take one day at a time.
Is their anything that you can do?
nope. We don't need anything. If you really want to do something you could keep our little man in your prayers or send positive energy into the universe. We have appreciated every one's kind words thank you.

If there is a question you have that I have not answered please don't hesitate to ask?

For all you CDH parent's who have answered the questions on my last post. Thank you it is so great to have a nice support group of parents who know exactly what we are gong through. I personally have followed each one of your story's and your little ones have a special place in my heart.

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it's happened again!

by Amber
After Owain's CDH repair surgery at seventeen days old. Learning that his surgeon had to use a gore tex patch because he was missing 90% of his diaphragm on the left side. We hoped he wouldn't need a patch. We new if he needed a patch his chances of having a reherniatoin were higher. Leaving the NICU with our sweet little warrior (44 days old) that has been my biggest fear.We just got off the phone with his surgeon and it has happened again. Owain has had a recurrence for the third time! This will be his fourth surgery. I was hoping that the results of his CT scan wouldn't be this. I hate that our little man is going to have to endure another surgery. another hospital stay. With any surgery their are always complications. We learned that with his first repair surgery when his spleen bleed to death and he nearly died. The difference now is he is a happy go lucky little boy. Looking at him you wouldn't even know he had a recurrence. He is full of energy,eating pretty good for Owain and is having no trouble breathing. Those are all really good signs.He is no where  close to being in critical condition. We are thankful.

The game plan for now is Dr.Z (surgeon) is going to have a meeting with other surgeons.Hoping to come up with a better plan. The gore tex is not working for our little man. He has three gore tex patches and still managed to have a reherniatoin  three times! He is not happy that this is happening again. Neither are we. Owain is his first CDH patient that has had a recurrence. Leave it to my little man to be a challenge.So mow we wait until Tuesday or Wednesday to hear what the next game plan will be.In the mean time we will be laying low.No more story time,play dates,trips to the indoor play ground. We need to keep Owain from getting sick. Our plan for tonight we will be having some quality family time with a movie and pop corn.

Thank you to every one who has left a comment here or on Face book. It really has been up lifting to read them.

If you are a parent of child with CDH and they needed a patch.
What type of patch was used?
Did your child have any recurrence?
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Tonight I am calm

by Amber
The last two weeks I have been internet less. The first couple of days I was having some hot  sweaty with drawls. I thought I was going to die not having the access to Hulu,  Facebook, gmail and the ten billion blogs I follow.Any time I had a burning question like are zebra's black with white stripes or white with black stripes? My friend Google was no longer right their to answer.  Seriously what did we ever to before the internet? The first couple of days were the hardest.You know with the burning desire to read my latest FB friends up dates but  once my panicky cold sweats slowly faded away. I began to realize I can breathe with out the internet and life with go on.....

and it did we celebrated Owain's second birthday sniff sniff. His birthday was pretty low key since our little man caught a not so pleasant viral infection.He was sick but not to sick to eat some rainbow cup cakes with sprinkles.
                               

After a week of being cooped up in the house apartment we got back into the swing of our normal weekly routine story time at our local Library,play dates, walks to the park on a dry sunny day.Owain also had his last scheduled x ray and a follow up appointment with his amazing surgeon Dr.Z. Everything looked good.Gore tex patch still working as part of his left diaphragm keeping all of his organs that should be below his diaphragm below where they belong. So we thought....

Something doesn't quite look right compared to his last chest x ray back in September. Dr.Z ordered an ultra sound to triple check. We had the ultra sound this after noon. The technician and the Doctor (remembered Owain from a  year and three months ago when he had his first and second recurrence.) Just like last time they weren't able to tell he has yet another recurrence. Owain's chest is unique. Not like your average two year old.Normally  the technician will pin point where the diaphragm is by locating the spleen ( his spleen bleed to death during his first repair surgery at 17 days old), kidney ect.... Since everything is in it's unique spot or missing it is much harder to pin point and determine a recurrence. Tomorrow Owain will have a CT scan. Then we will have some answers.
       Owain at nine months getting a CT scan
    
Tonight I feel calm. I remember when he had his first and second recurrence I was a nervous wreck of the thought of my baby having to go through yet another surgery. another hospital stay. I still don't like the idea of him having to go through all that yet again but I am calm. It is what it is. and I know that my little man is one tough CDH warrior. With all three of his surgeries he recovered quickly. Even after his first repair surgery at seventeen days old he nearly died,lost his spleen. He was in bad shape but five days later he was off the ventilator and in my arms for the first time. If my little man could get through that, surgery #2 (first recurrence), surgery #3 (second recurrence). Surgery 2 and 3 were only a day a part from one another.He recovered like a champ and  we were   home after only six days in the hospital.So tonight I am calm. We don't have answers yet if Owain has had another recurrence and will need a fourth repair surgery but   tonight I am calm. I am confident that no matter what happens my little man with handle it like a champ.
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