it's never to late for a Halloween post...

30 days after the sugar rush Holiday I am finally getting to it. Your welcome.We had some of our friends with small children over for a pre-Halloween celebration.The dad's shooting the breeze out on the balcony while us mom's stayed in side keeping the children in line.We munched on mummy pizza'a and ate way to many buckeye's.So many in fact a few days after the the sugar rush holiday I finally made time in my day to day life for the gym but that's another blog post for another day.As you can tell by this picture I snapped of O and his little friend jumping off the couch, Halloween was a jumping good time for all.
I would have to say that photo is my favorite picture of the night. I love it. Orange kitty with chocolate around his mouth and a cow in mid air.Some of you are probably thinking is that safe? Yes, it  was completely safe. After all I was on the floor right below ready to drop the camera if need be.Luckily the cow and orange kitty landed safely and I was able to capture this killer shot. My favorite photo of the night.Don't you love it? Here are a few more photos from our sugar rush Holiday known as Halloween ,thirty days ago. Enjoy.
two spotty cow's,Buzz&Orange kitty
Buzz keeping the universe safe with his glow stick and a stick.
and of course the cutest little pumpkin.
towards the end of our trick or treating the kiddos were getting a little to comfortable.

O's Day With Thomas, THE BOOK!

one chocolate one glazed

This morning little man and I ventured off to our local library.I was quite pleased with myself with only getting less than five hours of not so solid sleep. I really wanted us to have a pajama day curled up on the couch watching "how do they build that?" (little man's latest obsession a DVD all about building a garbage truck.) But I didn't want O to miss out on story time. So off we went. One shoulder ride to the bus stop. A thirty minute bus ride another shoulder ride across the bridge to the library.Actually let me be honest with you'all we were an hour early for story time so we walked around downtown. Well I did all the walking little man did all the riding. Dang my shoulders are sore. Walking around downtown to and from the bus stop carrying a 25lb. toddler on your shoulders does that count for a work out? Maybe now I can fit into my skinny jeans?
Story time was a success. O made a new friend, Nora. Darling little girl.I think little man was more fascinated with her baby brother. He's had a real interest in babies lately.He will make a great big brother one day. After story time before another shoulder ride across the bridge to the bus stop we stopped for a little treat. Doughnut holes. One Chocolate ones glazed. I ate the glazed. It was delightful. Boy I was glad I didn't buy more than one.Trouble those little doughnut holes.Of course my little man had a teeny tiny melt down after finishing his chocolate hole. He wanted mine too! He was shocked to learn that I hate the glazed one. How dare I. What can I say the child has my sweet tooth.Now were home little man is fast a sleep and I am doing everything in my power not to lay down. I will not take a nap today. Nope not me. After I wrap this post up in the next few words or so I will be a productive mommy and house wife. No nap for me. Early bed time before three in the morning is my goal.

Happy Wednesday You'all


I can't sleep. Seems to be  my new nightly ritual tossing and turning. Insomnia, I hate it. To much on my mind, I guess. Tonight I was really proud of myself crawling into bed before midnight. Snuggled up to the man I love, closing my eyes feeling the freshness of the cool autumn air{we sleep with our windows open that's how we like it}Aaaaaaahhhhhh sleep and then that's when it happened my mind started wandering. How should I season tomorrow's night's chicken? lemon pepper maybe, should I fry it or bake it. Defiantly bake.Damn it  mind I need to go to sleep. I am tired of feeling like a zombie. Go to sleep.

Rolling from my left to my right my mind drifted to a place I have been avoiding for well over a year. It's to painful when I go but sometime my mind goes their.Tonight I need to go their. My eyes began to water.Remembering the last time I held my grandmother's hand on her death bed. I wanted to take a picture of our hands touching knowing that this would be our last. I didn't know if it would be inappropriate or not. So instead I did the next best thing. I took a mental picture.I have never seen anyone so close to death before. Literally hours away.

The following morning my grandma, my best friend died.Wow typing  that very word opened the water gates.I have been avoiding sharing my feelings of grieve for well over a year now.It's time I let it all out.

I miss you grandma. Every time I  burn toast or bacon I think of you.I miss being able  to pick up the phone to ask you "how are you?" you always replied "better than nothing" Even when you were real sick and you could barely catch your breathe. I know your in a better place now. The pain of not having you grace this world of the living is still painful.I still have a jar of your last batch of  jam. It sit in my pantry. It has the year 2007 written on it in your hand writing. I don't even know if it's still good to eat. Does jam go bad? Eating it is not an option it's the last one you ever made grandma.

Grandma you will alway be in my heart and forever  missed. Love you to the moon and back.

{O meeting his great grandma 2008}

Where were you this past weekend?

We my friends, were in the  nut house.
Yup,  the Hazel Nut House
It was a Nutty nut nut time for all.
Even this boy ( a.k.a sponge bob patty) was belly  bun flopping. 
I am not sure what O was doing  here.
but the  cute boy next to him is his Cousin, sweet kid.
It was a nutty nut nut day 
The day was not all about nuts though.
Their were pumpkins too, lots of them.
sweet sweet sweet cotton candy on a cone (old school style)
My favorite, O's too.
their were plenty of shoulder riding.
better to view all the goats,chickens,bunnies,pigs,ponies 
great company
perfect weather
I wanna go back!

Another Giveaway, Claire & Cowboy Caviar

Oh how I love give aways. Beauty in the Attempt is giving away not one but two gifts to one of you in honor of her birthday.Isn't that thoughtful of her? Head on over to her blog to find out what she's giving away.Do it now! You have until October 17 {this Sunday} So what are you waiting for head on over to beauty in the Attempt. You just might be  the lucky winner. Happy Birthday e!

In other exciting news  Warrior Princess Claire was discharged from the hospital earlier today. Welcome home sweet home {again} Claire! Every night before O goes to sleep he asks to see a picture of Claire. It's so cute. Maybe one day these two CDH warriors can meet in person but for now they are blog buddies.

This is what I have been living off of lately...
I  am  addicted.
I can't seem to get enough.
It's super easy to make and a great healthy snack,dinner or even breakfast. YES breakfast.
I told you I am  totally addicted to Cowboy Caviar,baby.
I have my friend Rachel to thank for introducing me to this fresh totally addicting dish.
Thanks Rachel!

this is how you make it
1 can shoepeg corn - drained
1 can black eyed peas - rinsed
2 large avocados - cubed
roma tomatoes - chopped
2/3 cup cilantro - chopped - I just use 1 bunch
2/3 cup green onion - chopped - I just use 1 bunch
Dressing: Mix together in bowl and pour over ingredients above
1/4 cup olive oil
1/4 cup red wine vinegar
2 teaspoon chopped garlic
3/4 teaspoon black pepper
1/8 teaspoon salt
1 teaspoon ground cumin

Wordless Wednesday


I love these TWO!
strawberry or no strawberry
in my eyes they are both strawberrlicous!

Fare well Indian Summer, hot chocolate and prayers for Claire

It's crazy to think this time last week it was in the upper eighty's. Defiantly unusual for these parts for this time of year. I guess that was our Indian summer.Our Indian summer I think is officially over.Goodbye to shorts and tanks and hello sweaters. That's what I wore today, a sweater. This afternoon at the park I was still freezing and to think it's not even winter yet. The weather change seems extreme. Last week upper eighty's today low sixty's. I guess summer  is over, for reals. Indian summer really through me for a loop.

You know what hubs is making me at this very moment? Cinnamon Hot chocolate. My favorite. He's the best. How did I get so dang lucky?He loves me unconditionally and sometime I can be difficult. that's a hot chocolate.

I have been thinking about Claire and her family a lot. Claire didn't get to go home today. She's sick with some nasty infection. It breaks my heart. Poor baby. You good read more about Claire here. Leave a comment if you stop by. I know first hand when your stuck in the hospital with a sick child it's encouraging and uplifting to read comments. Not to mention it helps time go by little bit faster.

I'm gonna call it night. My Hot chocolate and I are going to curl up on the couch with hubs.

Good night.

unbelievable give away!

I just entered for a chance to win a Britax stroller
over at {Natural}Mommie
and so can YOU!
You have until November 12th MST. open to US and Canada.
So what are you waiting for head on over to {Natural} Mommy
The WINNER very well could be YOU!
Good Luck!

The BEST grilled cheese EVER!!!

no joke hands down the BEST grilled cheese ever.
I could live off of this 
all you need is
fresh mozzarella,fresh basil,bread crumbs
eggs,flour and oil

I think hubs could live off of this too.
Seriously it is AMAZING!
If you love mozzarella sticks this is the grilled cheese for you.
Well it's not really grilled it's kinda fried.
That's probably why it's AMAZING!

slice mozzarella thinly
rinse and pat dry the fresh basil
set a side

heat up oil in a frying pan

in a large plate ( I use a pie pan) beat a couple of eggs. I use 1 egg per sandwich.
have two additional plates or pie pans one with bread crumbs (I use Italian ) the other with flour.

place the mozzarella,basil in between two slices of whole wheat bread.
dip in the flour,egg,bread crumbs. make sure your sandwich is coated well.

gentle place sandwich in a frying pan with heated oil.
fry both sides until golden brown and the mozzarella is melted.
remove from pan,slice,serve with warm marina sauce and ENJOY!
I found this on the Parker's Reese Foundations site
   written by Breathe of Hope

What it is like to have a baby with Congital Diaphragmatic Hernia?

Imagine that you and your partner are expecting a baby. The thrill of the whole thought – another little being. The whole thing is a bit overwhelming and exciting. About the time many are diagnosed, is the 20 week ultrasound. Most couples go to the doctor excited to perhaps find out the sex of the baby and/or just to get a glimpse of this little one before they are born. Whose mouth and nose does this little one have? No one expects to be told their child has something wrong.
You are in a darkened room in order to see the ultrasound monitor and the tech is actually measuring the size of the head, bones and checking to see the organs. Then they see that something isn’t right. It is hard to not disclose this to the couple who is excited to see their baby, the hands the feet the nose. In that darkened room or perhaps after you are led to an office after the ultrasound, a health professional will then inform you that your unborn child has a birth defect called congenital diaphragmatic hernia. The survival rates are approximately 50 to 60% and they must tell you that the treatments they endure to save their lives may cause lifetime issues. They also have to tell you that congenital diaphragmatic hernia itself because the child’s organs did not form correctly in development may have lifetime issues.
You are then told there are options. Fetal surgery may be an option but depending upon where you live and the availability of surgeons who specialize in this, it could not be a financially feasible one. It also depends upon the mother’s overall health and the severity of the diaphragmatic hernia, so you must qualify to have this option available to you too. Your insurance coverage may not cover such a procedure. It is highly experimental even today. One day it may not be. You are also told that you should have this infant, if you continue this pregnancy at a level 3 or higher NICU at a Medical Center that has had experience, even with the fetal surgery you would need this too. They may require ECMO, a heart lung bypass in order to save their lives. To imagine your unborn child hooked up to a heart lung bypass? It is overwhelming. This isn’t supposed to happen.
You will also be given an option to terminate the pregnancy. You just passed the 12 week point where many couples start to breathe easier because you are past the crucial point of miscarriage in the first trimester. You are not supposed to be making life and death decisions for your child. You are supposed to be planning the nursery, picking out clothing and the only worry will be if you truly think you are up to being a mother or a father. Those worries are enough in themselves.
Now you are given options if you were prediagnosed prior to birth. You must make these decisions that will not only affect your lives, but your whole family. You will wonder if your choice of hospitals is good and question if you should go to another. None of the choices are easy. You will also be asked to undergo an amniocentesis to rule out any other abnormality with this unborn child. Many times there are none. Sometimes there are other issues.
Only other parents who have faced this understand the unexplainable feelings, the emotions that go from fear, to devastation to determination. Only other parents who have been there and done that can relate to this. Many of us were asked, “How can you?” We just do. We have truly little choice in the matter.
If you choose to interrupt this pregnancy, all the experts have told you based upon countless tests that your unborn child’s chances are less than 50%, you must endure the stigma. You wanted this baby and you chose not to have them suffer. It is not a selfish act but a selfless one. Some will state if you didn’t go full-term this child doesn’t count – so not true. You will also change because of this experience. Your child will never know the pain and will always be in your hearts.
If you choose continue the pregnancy and hope and pray for the best you will also have doubts and wonder if you can endure seeing your small infant go through surgery, recover and endure. If you are the mother, you will have this constant reminder moving and kicking within you. If you are the father, each time you see your partner, you will have this reminder. The thoughts of what you both will have to endure for your child and what your child will endure will not be far from either of you.
Then there are those couples who were expecting a healthy baby and their child is born and goes into repertory distress. They whisk the baby away and start intubation and assessing the condition of the infant. You may not hear anything for hours. Not knowing what is happening to your child, to this baby you have a nursery prepared for, a life planned out for and now they are taken from you. The doctors will then come to you and tell you of this birth defect which has a 50% mortality rate. Your child may be treated in the hospital you delivered or many times may have to be transported to another for treatment. You are in shock. What in the heck is a congenital diaphragmatic hernia? How did that happen? Why didn’t they see it before? When can I see my child? When can I hold them? Those that had the diagnoses prior to birth at least know of the protocols and procedures that health care institutions do to attempt to save the lives of these babies.
Both will sit by the bedside and pray, hope and wonder what is next? You face the unknown, the lack of control, the overwhelming feeling of parents just to pick their child up who is suffering and ill cannot be acted upon. This isn’t supposed to happen this way! Why your child? No one can give answers to that question. You go from watching the monitors to not watching the monitors to asking if they have had a good day or a good blood gas for the past hour. Sometimes you cling to just a good minute.
If you are blessed enough to have your child endure surgery, possibly ECMO and recover from both then the next hurdles are feedings and weaning the painkilling drugs they have been on since birth. This is a slow process. It takes time and patience. Many of these children due to the organs affected may have gastrointestinal reflux and due to the tubes down their throats oral aversions. You wonder how you are going to take care of this once fragile infant at home. You are warned of their lung condition being fragile, that they may not have the immunities other children have and must be guarded against a society full of germs. Your best friend will be anti-bacterial soap and hand sanitizers. (Next to an abundant supply of burp cloths for the reflux.)
And if you are faced with letting them go, allowing them to earn their wings, either by their choice or after being told that everything that could be done has been and there is nothing left to do. That is the worst loss, but each and every parent who has had ever to let their child go in this way will tell you, “We just knew it was time”. The most unselfish act in the world is to tell your loved one, “It is okay to go.” They will be out of pain, not have to endure any more but that is when your pain will immeasurably increase.
It takes courage, faith, strength you never thought you could have to endure having a child with CDH. You will be the most devastated you ever have been, you will be more exhausted both physically and emotionally than you ever have been before. You will also know that no matter what life throws at you now, it is small compared to what you have endured.
© Breath of Hope, Inc 2010

no slowing down,a new baby,surgery and pumpkins...

What a busy week and to think it's the weekend and their is no slowing down in our house hold.Between soccer tots,family in town, dinner guest tonight a pumpkin painting play date tomorrow.Every weekend is booked for the next couple of months.I love staying busy but I also really love having a pajama day. Lounging around the house  with my two favorite men building forts in the living room,eating pop corn and sipping on hot cocoa. Yep those are my favorite kind of  days. Were gonna have to squeeze a pajama lounging,fort building, pop corn eating,hot cocoa sipping day in some time in the next month, for sure.

My best friend (more like a sister) and her husband had their fist baby. A girl, Jenna Ruth.I am over the moon excited for Erin and Stew. Congratulations you two, now a beautiful family of three. Jenna is absolutely adorable. I am smitten over her. Her picture anyways.Haven't had the pleasure of meeting sweet Jenna in person yet with thousands of miles in between us. I can't wait for that day.Once I  get permission from her lovely parents to share her picture with all of you.You all will be smitten too.

Claire, a beautiful vibrant three year old recently had surgery to repair her re-herniated diaphragm. I have been thinking about her and her parents a lot. Sounds like Claire is recovering nicely. Their has been talk of her getting to go home Monday. Woohoo!If you have a second, Stop by her blog and wish her well. Thanks.

I am going to leave this post with more pictures from yesterdays pumpkin patch adventure. Enjoy.

O and C best buds since infancy
no one mess with C not while he is hay collecting.
Hay collector C, making a cozy nest in the wagon
but that darn O the crane[ ahrrrrrr kachhuh kachhuh kachhuh... ahrrrrr ]
 messing up his nest.
All in all yesterday was a GREAT day at the pumpkin.
Looking forward to doing it again.
Hope you all are having a terrific weekend!
thanks for stopping by.

When hubs,I and O's  team of surgeons were discussing whether or not to  go with the latissmus dorsi flap procedure  back in March. We wondered how loosing that very muscle would affect his ability to climb.

As you can see
it really hasn't slowed him down
one bit
"look at me I am king of the hay pyramid!"

Sometimes I wish time would stand still

They weren't kidding when they say "motherhood zooms bye". Seriously I feel like just yesterday my little boy was a bald headed blue eye curious easy going never sleep through the night baby.Oh! how I miss late night early morning snuggles.I don't miss being sleep deprived though that is defiantly a plus side to my baby being a little boy.If I could I would freeze time. I get teary eyed just thinking of my baby little boy growing up and leaving for college. Sniff sniff.      
O 6 months old

Yes, I am well aware that my baby little boy hasn't even started pre-school yet and  I am already feeling the empty nest syndrome.Crazy, I know. I love being a mommy. It's been my dream. I was that girl that secretly played dolls until the age of fourteen (ssshhh don't tell any of my peers). I want to savory every moment of watching my little boy grow into a young responsible gentlemen. sniff sniff.

If only I could freeze time.
thanks to digital, I can.
savory and capture those moments in time I wish I could freeze.
Like this beautiful moment my almost three year old(sniff sniff) 
playing soccer with the greatest man I know.
His smile melts my heart and brings me so much joy.
Moments I will savory until the end of time.
Like this one....
 my little boy  lady bug doing his team cheer with his peers.

a little weekend recap

O at the beach April 2010

I really don't have a whole lot to say...
but since I made a blog promise a few post back here and I have already failed to hold up to my bargain. Headache or no headache I will blog dammit.

We had a pretty good chill weekend. No real big plans.The only event on our calendar was Mr.O's soccer tots.I stayed home while hubs and O ventured off for a little game.  I had big plans of being super speedy productive in the morning while the men were away.I slept. So much for a speedy productive morning. I woke up to my little man bringing me a dandelion he picked outside the soccer arena. {grin}

Hubs traded places with me.Soccer is early 9:30 and us both being the night owls that we are that's pretty freak'en early for us on a Saturday.After nap we played out side at this really cool park our friends joined us. It was a glorious sunny day with great company. We ended our day with happy hour at Gustave's. 

Sunday it rained. Which was great motivating my ass into being productive. I feel good with the amount of organizing and cleaning I accomplished today. Except for my headache. Damn you headache! In between being productive O and  I got all crafty. 

It was a good weekend.

not just any ordinary pancake

Growing up my  just about every Sunday morning my mom would make pancakes. Not just any ordinary pancakes but German apple pancakes. They were and still are one of my favorite dishes my mom would make. Now that I am a Wife and ma-mom I carry on with this tradition.
You will Need:
4 eggs
3/4 c. all-purpose flour
3/4 c milk
1/2 tsp. salt
1/4 c butter
1/4 c.sugar
1/4 tsp. ground cinnamon
2  med. apples thinly sliced

Heat oven to 400' place r round layer cake pans (9x1/2inch) in oven. Beat eggs,flour,milk and salt in small mixer bowl on medium speed for 1 minute. Remove pans. Place 2 table spoons of butter in each pan rotate pans until butter melts and well coats sides of the pan.

Arrange half of apples in each pan. Divide batter evenly. Mix cinnamon and sugar. Sprinkle 2 table spoons over each pan,. Bake uncovered 20-25 minutes.


stream of consciousness

We had a pajama day today. Didn't leave the house once not even to check the mail or take out the garbage. Every once in a while I love a good pajama day like today. I did manage to get some laundry folded and put away oh and this morning I baked blueberry muffins and managed to burn a boiling pot of yams and carrots (don't ask) Owain did some beading. He made a fishing pole. I like his beaded fishing pole. I made a bracelet.
My throat feels a little scratchy. I really hope it's not the beginning of something.knock on wood. Poor little man woke up several times hacking up a lung. Nothing  a little honey wouldn't help. Did you know honey helps with a cough?The nice thing about honey is it's sweet and Mr.Owain loves sweets. Just like his momma. I have the best husband ever! Tonight he made country chicken gravy,mashed potatoes and corn. One of the best cooks I know. Lucky lady I am.
It's not even October yet and Owain has already changed his mind several times on what his going to be for Halloween.We shall see. I love this time a year with the holidays and season change and all. It rained today I hope it's not the beginning of the rain for the next six months.As much as I love this time of year the rainy season can get a little old.We have a spider web in the  hallway. I love it hubs is a little freaked out by the web and the family of spiders.Owain was a little spooked out too but now every time he walks under the web he waves and says "hi spiters"
What to you think of Owain's fishing pole? Pretty snazzy. I now have twelve followers. Let me rephrase that I have twelve followers of this little blog of mine. Not counting the grandparents. Woohoo! thanks for following. I love reading your comments. It makes my day. {grin} I have been praying for this sweet little baby. Well I think I am going to call it a night. A hot bubble bath and hot honey tea are calling my name.

Have a good night!
thanks for stopping by.

what not to sing...

It was late a quarter after minute.

I was drifting in and out of sleep on the couch while an episode  of Dirty Jobs playing on the flat screen. I was waiting for hubs to come home from a guys night out.Failing miserably to keep my eyes open.  When I heard a frantic screaming "waaaawaaaaawaaaaawaaa" it took me a minute to realize where the screaming was coming from Owain's room. I jumped up off the couch in a daze running to check on my little man. Slinky kitty (Owain's cat) was sitting outside of his door trying to claw his way into the room. He loves his Owain and hates to hear him cry,as do I.

I stumbled into Mr.Owain's room to see him almost  hyperventilate with big old crocodile tears run down his cheeks. He was still laying in his big boy bed covered up with his blankie. I scooped him up into my arms and asked him "honey what's the matter?"
 In between tears he proceeded to tell me "rain cloud Ma-mom rain cloud!"
"oh honey you just had a bad dream"
I held him close rocking him. I started to sing him a lullaby. The only problem with that is I couldn't think of any lullaby and I was till very much in a sleep daze but I wanted nothing more than to comfort my boy. So I sang the first song that came to my mind.

"theeeee iiiiiitsy biiiiiiitsy spideeeeeeeeer"
before I even got to the next lyric he broke out into a  scream

Note to self: when your child has a dream about a rain cloud don't sing them the itsy bitsy spider song.
bad idea a really really bad idea.

I quickly changed tones. Forget the dang lullaby. I grabbed the nearest book and started to read him Chimps don't wear glasses by Laura Numeroff.

Plan B worked Owain's crocodile tears faded away.He forgot about the scary gray rain cloud as he laughed at those silly chimps wearing glasses while they beat on the drums,played the guitar,sang in the microphone those silly old chimps they think theri rock stars.They were smart enough or at least wake enough not to sing itsy bitsy spider.

I spent the next forty five minutes reading books snuggling with my little man. In between books we did have to look out the window to check and see if their were any rain clouds.Hubs came home from his guys night out and we tucked Owain back into bed. "Good night Mr.Owain we love you!, sweet dreams!"

What is CDH?

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form around week 9-10 of gestation. This can allow some of the abdominal organs to move into the chest, preventing normal lung growth and possibly also causing damage to the heart. This defect happens in about 1 in 2,000 births. Unfortunately, CDH is a rather unknown birth defect that most people don’t hear about unless their baby is diagnosed with it. CDH happens at about the same rate as cystic fibrosis and spina bifida.
Many hospitals aren’t equipped to treat CDH babies. They either don’t have surgeons who can perform the hernia repair surgery or they don’t have an Extracorporeal Membrane Oxygenation machine (ECMO) which is a heart lung bypass machine that is sometimes used in treatment of these critically ill babies. 
The survival rate for CDH babies is around 50%. At Legacy and other hospitals that use the gentle ventilation technique for treatment there is a 92% survival rate for babies that don’t need ECMO. Some babies with CDH also have other birth defects, affecting the heart, chest wall (pectus excavatum) or spine (scoliosis). There are also some chromosomal abnormalities that can occur with CDH. Some babies, however have only the CDH and no other structural or chromosomal abnormalities.
So many little ones that are born with CDH have lasting problems. Often the lungs don’t grow to normal size or function so babies may still need the help of oxygen or other lung medications. Other common problems are with feeding, from acid reflux to oral aversion and problems with weight gain. Some babies also experience different developmental delays from extended hospital stays or ECMO and the side effects of different medications.

O's fight to live!

This is a CDH success story.

I found this poem on another blog that  I found helpful it gave me strength when I felt weak.
“I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.
I know disillusionment as I have been betrayed by my own body. I have been tried by fire and hell many never face, yet given time, I stood tall.
I have prevailed.
I have succeeded.
I have won.
So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.
I listen.
And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.
I have learned to appreciate life.”
Aurthur Unknown
What? Were gonna be parents!

Hubs and I were pleasantly surprised when we discovered that we were pregnant with our first baby. Shocked would be an understatement. We weren't  trying at all. In fact I was on birth control. We talked about having a family and always new it was in the cards for us we just had no idea how soon our family of two would soon be a family of three. Once we got over the initial shock "WERE GONG TO BE PARENTS" we were on cloud nine. We had some concern right away. With me being on  birth control we new I immediately needed to stop taking it. Another concern was my seizure disorder. The medication I was taking at the time could possible be harmful to my unborn baby. I was terrified knowing that I was taking medication for the first six weeks of pregnancy unbeknown to me  that could cause severe birth defects like Spina bifida and Nerul tube defect.  I  immediately stopped all of my medications. Stopping all of my mediations could be potentially dangerous. The risk of me having a seizure go way up.The risk of continuing taking my medication  were greater. I didn't have a choice I needed to do what was best of our  baby. With out medication it would only be a matter of time before I stared having seizers which could be harmful to our  baby and myself. In order to keep my seizure disorder under control I began to see a natural path and started taking natural supplements. They were completely safe  for our  unborn baby and they were keeping my seizures under control. It was a win win.

At twelve weeks we had our first ultra sound. It was amazing to see our little baby.To hear a strong heart beat. That's when it became rally real.  WERE GOING TO BE PARENTS! Holy batman this little life we are responsible for. From that moment on Hubs started calling our little growing babe a pot sticker.Kinda weird, I know.That's what our little babe resembled at the time. We both were beyond  excited to be parents.

We had another ultra sound a few weeks later to get a good look at our little pot sticker's spine. To rule out spinal bifida. I also had blood work done to rule out Nerul tube defect. While we waited for the results we prayed "please god let our little babe be healthy" It felt like an  eternity,waiting. A week or so went buy and finally  We heard the news we were hoping to hear our little babe tested free and clear of both birth defects. Our prayers were answered. Thank you GOD! thank you GOD Our growing little pot sticker is gonna be just fine. 

The next few weeks were a breeze. My belly was getting bigger and bigger by the day. I was filled with so much joy. I loved being pregnant. I felt so blessed to feel this little babe of ours move around. I really felt at peace that our little babe (aka Pot sticker) was going to be born healthy. Placed in my arms right after birth and nurse like a champ. The natural supplements I was taking were still working for the most part. I did have one grand-mal seizure. It only lasted a couple of seconds. I was told by the ER doctor that if I had another one that I would have to consider getting on a different type of anti-seizure medication that would be safe for our unborn baby. The seizure didn't faze our little babe. Strong heart beat check. My cervix closed check. Having a seizure while pregnant can block the oxygen to the unborn babe and it could also cause preterm labor. Neither one of these we wanted. So with all that being said I was monitored by the Doctors and my natural path. I wanted to go as long as I could before having to take  any anti-seizure drug. The longer I go the better for our babe but I was also in fear of having another seizure. They are horrifying. I wouldn't wish a seizure on my worst enemy. If I had enemies.

CDH, what?

The day the storm blew in was the day of my twenty week ultra sound. I didn't think anything of it except that we were going to find out the sex of our little babe. Boy or girl. It felt like Christmas morning we couldn't wait to find out if we were going to have a son or daughter. It never occurred to us that my pregnancy and our life's were about to take a Jurassic turn. We left  on top of the world "we were having a BOY!" We were so excited we immediately started calling everyone we new to share our  news. Hubs went off to work with one of the ultra sound pictures of our son and I went home.

We were having a BOY! a baby boy our baby boy. A son. Our son.Oh boy were we excited!

The storm didn't really hit until quarter after seven that night. I was happily online registering for all the baby stuff when my phone rang. I looked down at my caller ID. Unfamiliar number. I picked up the phone "hello" that was out of my character. If I don't know who's calling I usually let it go straight to voice mail. Something told me to pick up that darn phone. On the other end of the line I heard my O.B's deep Russian accent. My heart dropped. I new something was very wrong.I tried my hardest to remain calm.My heart began to beat rapidly. He began to explain  that the tech noticed that our baby had a  fatal birth defect known as Congital Diaphragmatic Hernia. I had know idea what the f***k he was talking about? Come to think of it the tech did leave the room several times during this morning's ultra sound. I didn't think anything of it, Until now. Wiping tears I asked him "could you please call my husband at work and explain all this to him?" I was a hot mess. I new I wouldn't be able to explain clearly all the medical information. My O.B replied " yes but I need to make this quick, I have been at work all day" are you f***ing kidding me! That was the last I spoke to that jerk of an O.B. When I hung up the phone I collapsed to floor sobbing yelling "why god?why our baby? why our son?" I felt as if my heart was being ripped out of my chest. All our hopes and dreams for our son being born healthy were gone.

Hubs came home from work early. He picked me up off the floor and we sobbed in each others arms. Well I sobbed he remained calm.Trying to be strong for me, for us.He shared with me what that jerk of an O.B told him "that their was no hope for our son. he highly recommend having  abortion" I was stunned. I had know idea that was even a possibility at twenty weeks gestation. How could we just abort this little life?I can feel moving inside of my womb. Our son, abort our son! That was not a possibility for us. We new we couldn't give up hope. Hope that our son would beat the odds and be CDH survivor.

The rest of my pregnancy was filled with many Doctors appointments, Ultra sounds, test after test. Instead of researching  for a pediatrician. We were researching for the best pediatric surgeons.Touring through a NICU. The Doctors kept reminding us that our baby is going to be born sick,very very sick.Baby's born with CDH need to be in the level three NICU. Where the sickest babies are cared for. Many tears were shed. We prayed and cling ed on to hope.Hope gave us strength. We found hope reading  CDH survivor story's and even having the pleasure of meeting a sweet vibrant baby boy who fought the fight to survive and won! Meeting with him and his parents gave us hope for our sweet son.

A Warrior is born

Four days before my scheduled induction day my water broke.  I was in a panic.  I wasn't ready. Not now. Please god just let me carry my sweet boy safely in my womb a little longer.Please, I begged. With me being the procrastinator that I am I didn't even have our bags packed. I was terrified of the road ahead.Afraid of the unknown. Afraid of the CDH roller coaster ride. This was one ride I wish I could avoid competely but this was the ride chosen for us.For our babe.No time to be weak I needed to be strong for our son.

Twenty -two hours of labor (three hours of hard core pushing) It was decided that I needed a C-section.I cried this was the last thing I wanted. Our little babe was sunny side up (face up) so with each push he would go down then back up. I was exhausted and at that point I just wanted the whole labor thing to be over. Cut me open and get him out already!

at 2:32 pm on the day of January 25,2008 our little warrior O was born

Before you were conceived I wanted you.
Before you were born I loved.
Before you were here an hour I would die for you.
This is the MIRACLE OF LIFE.

O had a first couple of really good days.We were so thankful. Then he started to really take the turn for the worse. The Doctors prepared us for the "unthinkable". We were on pins and needles. Praying for a miracle. We never gave up hope.I was terrified this wasn't how I imagined how the birth of our son would go he should be cradled in my arms. We should be home..Instead our only son was in the level three NICU on life support fighting for his life. Terrified is an understatement.

Finally at seventeen days old O had his repair surgery right at his bed side in the NICU. He was so sick and fragile his amazing surgeon didn't want to risk moving him to the operating room. That was the longest four and half hours of our life. O's surgery was anything but easy. His spleen bleed to death. He lost a lot of blood  he had to have several blood transfusions.(thankful for people who donate blood, thank you!) He was missing 90% of his diaphragm on the left side. His stomach and bowl were in his chest. Which pushed his heart over to the right. His lungs were underdeveloped.The amazing thing about lungs is they continue to grow until a child is eight years old and even though O's lungs were small their was hope.

He was still in critical condition. The next several days will be tough for O. The Doctors and Nurses reminded us " he will get sicker before he gets better " Which is really common for babies born with CDH.

The day after his BIG repair surgery hubs and I walked into the NICU feeling GREAT. Our son is truly amazing. Yes he was still very very sick. I new in my heart now that  O fought through this major hurdle he was only going to amaze us and continue to fight and kick CDH's ass.Before we were able to walk over to O's bed side one of his Doctors stopped us dead in our tracks. "Wow! I thought O died last night! his surgery didn't seem to go to well, you know he is doing okay now but he will get sicker before he gets better." My first instinct was to give her a bitch slab. I took a deep breathe before I said anything  I would re-great and walked over to my little warrior all bandaged up from war. Keep in mind at this point O was stable. Still critical but stable.This was the one Doctor who had the worst bed side manor. From day one she had very little hope that our son would beat the odds and survive. I new O would prove her wrong. He was only going to go up from here. And that he did five days later he came off of the ventilator breathing with the help of oxygen.That very same day we held him for the very first time. He was  twenty two days old.

Three weeks later we were bringing our little miracle home.It seemed so surreal. We waited for this day for so long. Their were days we weren't sure if this glorious day would ever come.We had so much to be thankful for. We new he wouldn't be at this point with out his awesome surgeon, Nurses and all of the NICU Doctors even the one with the horrible no good bed side manor.He was breathing room air, and only on two medications one for acid reflux (another common thing for babies born with CDH) and an antibiotic(for the loss of his spleen)  he will have to remain on until he is three to five years old.

Hip hip hooray were going HOME!

The next few months were pretty uneventful. We were happy being a little family of three at home. I was anxious and worried all the time that O's hernia repair might   re-herniate. My biggest fear. Since he only had 90% of his left diaphragm his surgeon had to get  creative and and tie the gore tex patch (his make shift diaphragm) to his rib cage. We were told he had a 15% chance of having a recurrence. With that being said O had to have a routine x-ray every three months. We lived each day to the fullest. With every sleepless night I was oh so thankful for our healthy little man. Our miracle. Our CDH warrior.

A CDH Mother's biggest fear

At nine months old with a routine x-ray we learned O had a recurrence.My heart dropped with this news. My fear was now becoming a reality. The day before his daddy's birthday O had his second repair surgery. Once again we were on pins and needles. This time his surgeons wanted to approach the situation with a less invasive approach, endoscopic . Surgery went well,so we thought.

The next day was a night mare. O was feeling miserable with a high fever and we learned after another x-ray and CT scan that  some of his bowl was still  poking through his diaphragm. He had to have a third surgery the following day.Two surgeries in three days.We weren't thrilled. I felt really uneasy having to hand my nine month old pride and joy over to the Nurse again. This wasn't part of the plan. Two surgeries! Not the plan, dammit.

O pulled threw like the warrior that he is. Two surgeries in three days ( a total of 7 hours in the OR), six days in the hospital we were bringing our sweet boy home once again.Thank you god! and thank you to all of his amazing Doctors and Nurses.  We love each and every one of YOU!

Not again!

We continued to live life to the fullest. O hit all of his milestones right on track. We are so proud of our little man. The biggest issue we had was getting him to gain weight and eat like a real boy. Considering every thing he has been through this issue was minor.

A week before his second birthday O had his last scheduled routine X-ray. When I was told this would be his last schedule X-ray. I felt uneasy. It was never fun taking our little man to have an X-ray but with each X-ray  gave me peace of mind that his gore tex patch was still intact. O never showed any sign of having a recurrence. Each time we found out was through an X-ray.Knowing that their would not be anymore scheduled X-rays concerned me. what if O had another recurrence? what if he showed no signs until he got so sick it would be to late?

His surgeon gave us a thumbs up after taking a look at O's last scheduled X-ray. A few days later we got a call from his awesome surgeon. He took another look at O's X-ray looks like he had another recurrence. My heart dropped with the thought of our little man having to go through yet another surgery, another hospital stay.I was thankful for his thorough surgeon taking a second look.Just another bump in the CDH roller coaster ride their is nothing we can't handle.Nothing O can't handle.

Since O wasn't showing any signs of being uncomfortable. His recurrence didn't seem to affect him at all. His surgeon didn't feel the need to rush him into surgery. He wanted to meet with a team of surgeons to come up with a better game plan for O. His surgeon never had a CDH patient have so many recurrences. Leave it to our little man to be his first.

While we waited for the team of surgeons we tried to keep our routine the same and have lots of quality fun family time. We also tried to prepare our two year old for another stay in the hospital. Every night for the two months before his fourth surgery we read him a book about going to the hospital.It became one of his favorite books. I was nervous for this hospital stay. O is much more aware of his surroundings.I new this would be a difficult  for him. On the bright side hubs and I were familiar with the hospital we new both of us could sleep in O's room unlike when he was in the NICU.

Fourth times a charm

March 31,2010 we drove our sweet boy to the hospital before dawn. I was anxious and just wanted to get this all over with. So we can move on. So O can move on. I felt confident in the team of surgeons. This was the longest surgery to date eight and half hours long. O once again handled it like a champ. Every thing went well. This time he had his liver and small bowel in his chest. Instead of putting in another gore tex patch like they did the last three surgeries. They removed his rib so they can do a latisum dorsi flap.  O has three gore tex patches and a latissimus dorsi flap working as his diaphragm.We feel very hopeful and confident that this will

The recovery process was painful. O had his arm in a sling, a chest tube and a JP drain. For the first four days we couldn't hold him.This was difficult. O didn't understand why ma-mom couldn't hold him. At one point he was kicking and screaming having one of the biggest temper tantrum ever. He had every right to throw a tantrum of this nature. I did the next best thing I crawled into his hospital crib leaned over in the most numbing uncomfortable position to comfort my boy.

Easter day, six days after surgery we were going home. We were  behind happy to be getting the heck out of the hospital but a little reluctant. O had to go home with the sling which was no big deal. He also had to go home with a JP drain. Eeeeck it totally grossed me out. I am not a Nurse.I don't do well with Nurse kinda jobs like a drain coming out of my toddler's side.Needless to say it totally grossed me out. Not as much as his chest tube which was removed on day four. Thank goodness the chest tube had to be removed before being discharged.  Thankfully hubs took on the role of taking care of the JP drain.Nurse Hubs to the rescue! Two days after being home we took O to one of his amazing surgeons to have it removed  and that was that no more JP drain, you won't be missed.
JP drain

 A week later O's no longer needed his sling or any pain medications. He was back to being a curious little boy full of energy. Each time O has another set back (surgery) he amazes us how remarkable his little body heals. We are so blessed to me his ma-mom and daddy. He wouldn't be here thriving without his team of surgeons,Nurses and Doctors. Thank you for all your hard work and devotion to making a HUGE difference in our son's life and others.

Thank you for taking the time to read O's story. O's is not alone. Every year 1600 babies are born with Congital Diaphragmatic Hernia. Out of those 1600 babies only 50% will survive. My heart aches every time I hear of another baby/child loosing their fight against this awful birth defect.