Our family's journey through life

I did not host Thanks Giving dinner in our tiny two bedroom apartment. Do you think I am crazy to have two grandma's,one great grandma,one spoiled Aunt,one big cousin plus daddy,mommy (that would be me) and of course the baby oh and we can't forget out kitty cat!

I haven't been cleaning and doing at least five loads of dishes and endless laundry since Thanks Giving day because I am not crazy and did not host thanks giving dinner. Nope not me!

The day after thanks giving dinner I did not go in a state of panic because Christmas is only a month away and I haven't even begin to start my Christmas shopping. That would be crazy of me to just now begin all my shopping. It is a good thing that I am not crazy!


The other night when I was rocking my sweet little baby boy to sleep I did not get all teary eyed at the idea of him turning one in only two months. My baby is going to be a toddler and he will no longer need me!

I hate pumpkin pie! and it's a good thing that I do because I am not the one too eat half of the pie all to myself. Why would I do that! When I am trying to watch my girlish figure. Nope not me!

If you would like to read more Not Me! Mondays go to one of my favorite blog My Charming Kids. The creator of Not Me! Mondays

I am a little late with this post. I apologize,really their is no excuse. just being pure lazy not really feel like blogging plus I have been busy playing with my little man.

We had a nice thanks giving. Owain got to try a little bit of grown up food. He had all the fixing's turkey,stuffing,mashed potatoes and gravy,pumpkin pie and don't forget grandma P's famous jello she made just for him. Yum yum!
Owain really looks up to his big cousin Isaiah. Here is a picture of him listening to a story his big cousin was reading. Isaiah is only four and doesn't know how to read yet but he made up the story as he went along. I wish I could remember the words to his story it was really a priceless moment.
Owain with his grandma p
Owain with his great grandma Judy,big cousin Isaiah and grandam Outrageous
Aunt Anna reading Owain favorite book This Little Chick by John Laurence. We probally read this book to him at least ten times day, He loves it!

Dear Owain,

Your daddy and I are so proud of you! looking at you today know one would of ever guessed that you have had three surgeries. Two of them last week! During your stay in the hospital daddy bought you your very first balloon with Tiger on it and it says "bounce back soon". I find it to be very fitting as you always "bounce back soon". You make surgery look easy. It never seems to slow you down.Here is a picture of you taken today only one week since your second surgery and your all smiles. I love your little personality it really shines. You are always full of smiles. You really are the happiest baby I have ever known. At the young age of ten months you have a love for life.
Your getting really close to walking. You are able to stand for a few minutes with out holding on to any thing before you take a tumble. I am so proud of you! I was afraid that with having two surgeries only a day apart that might slow you down developmentally. Not you nothing seems to slow you down. You are crawling and climbing onto everything. You are one very busy little man.

Owain you make my life complete. I love being your mommy! Each and everyday I wake up feeling incredibly blessed to have you for a son. I am the luckiest mommy in the whole world!

Love,

Mommy

P.S In the picture of you standing you are holding Bunny Bear. He is your absolute favorite toy.Every time you see BB you start busting up laughing. You just think he is the funniest bunny bear ever! Whenever you start busting up laughing your daddy and I laugh too. I treasure these moments we have with you.

As of 3 o'clock yesterday afternoon we have been home! It feels so good to be home. I know we were only in the hospital for five days and four nights but it sure felt like five months!

Owain was happy to be home too. As soon has we were home he was smiling and waving his hands and he crawled all over the place getting all of his toys out. This was the first time we have seen him crawling since his third surgery on Thursday. It was great to see our little man doing all the things he did before his surgeries.

Overall Owain is doing great! He is having some morphine with drawls and last night he had a hard time sleeping. He kept waking up every two to three hours. We have been giving him Tylenol for pain. I think he might have over did it last night by crawling and standing.

Since early this morning he hasn't really needed any Tylenol and he has been eating pretty good.

Their is no place like home!

Wow I thought we would be home by now! I should know by now you just never know with the crazy CDH roller coaster ride. Many ups and downs and crazy turns. Right now we seem to be at a smooth and steady track. Owain is slowly headed in the right direction. We are hoping maybe by thanks giving we will be home?Cross our fingers!

I have always known that Owain had a 15% chance of re herniating Considering when he had his first repair surgery at two and half weeks old he was missing 90% of his diaphragm and his amazing surgeon used a gore tex patch to close up his hole. I just never thought that he would need two repairs in the same week! That one caught us all by surprise.

On Wednesday (daddy's 29 birthday) the Doctor were talking about letting us go home.I thought could this really be a possibility to go home a day after Owain's repair surgery?We were expecting to atleast stay 3-5 days. That is if everything goes smoothly. We were trying not to get our hopes up.

As you all know we didn't go home. We stayed so Owain could have another repair surgery. Now this is were the roller coaster ride decided to take some crazy dips and turns. I always hated this part of the ride. I felt so sick to my stomache! I hated the idea of my baby boy having a more invasive surgery only a day after his last surgery.I was terrified but at the same time I feel we are so incredible lucky that they caught this before we headed home.

We didn't really know exactly why Owain re herniated until the surgeon were up close with his diaphragm. What happened was with his surgery on Tuesday he had a little bit of tissue on his left side and that is where the surgeons sewed his diaphragm to the tissue(that was the best case scenario) Well not for Owain the tissue wasn't strong enough to hold so he had a little bit of bowl poking through.This time around they sewed his third gore tex patch to part of his ribs. I am praying to god that this holds!

Yes,now our little warrior has three gore tex patches closing up the hole in his diaphragm and he not only has one cool warrior scar but two, plus three holes (from his surgery on Tuesday).

Owain is headed in the right direction. He is slowly getting his appetite back and is needing less pain medication. Today he was his happy self. It was great seeing him laugh and play again.

We know he is feeling better when he thinks it is funny when he pulls off mommy's glasses! I have been trying to put a stop of this game but right now he could pretty much get away with anything. Pretty much all day he has been playing this game. It's pretty cute he gets this mischievous twinkle in his eye (the same one his daddy gets) then he laughs and makes a move for mommy's glasses. I can't help but laugh too.

Thank You to every one who has been praying for our little man. Keep them coming because they are working!

If any of you have ever spent the night in the PICU with your child, I am sure you know that the in-patient rooms are like Penthouse suites in comparison. If you are able to get a little shut eye in the PICU along side the boops, bleeps and beeps, I guarantee you that your much needed sleep will soon be interrupted by loud nurses, and a constant stream of surgeons(and cronies), students, and noisy things. In this day in age, the Red Coats are no longer a concern since the draft of the Declaration of Independence and our self found freedom from Britain.
But today we declare war on the White Coats. We are going to host our open rebellion by posting a sign on our door "No White Coats allowed" or "White Coats admitted by Appointment only"
Well, anyways Owain is doing pretty well. He is still in a little pain which shows when he rolls over, gets picked up, or sits up. Hopefully tomorrow we can get his epidural out.

So, last evening we got word from one of the Fellows that the follow up x-ray showed an anomaly according to the radiologist. He didn't think that it was an issue, but the radiologist did... that's probably why he is a fellow. Well to make a long story short(of course this does not affect our lengthy wait time) Owain had another CT scan which showed more bowel in his upper chest cavity. Either this was missed during the initial thoracoscopy, or he had a quick re-herniation after surgery.

It took us from noon yesterday to 9:30am today to figure this out.... The wait was painful. We were about to go on a rampage last night! Sheesh! Comon! Seriously, if a situation is urgent in a hospital, apparently that means as long as it is taken care of within 24 hours after they say they will take care of it, everything will be ok!

So here is the run down, Owain had a 101 fever for 5 hours before we could get Tylenol.
At 12:00noon they took the x-ray. At 2:00pm we got word that He might go in for surgery that night. At 3:00 he ran his 101 fever. At 5:00 we got our ct scan which was ordered at 2:00pm. At 8:00pm we got in contact with Dr.Ziggy and got not a great understanding of what to expect.... at 8:50pm we finally got Tylenol for owain, and his fever went down. (because of Dr.Ziggy relaying our discontent) It was a hellacious day, either because we were over excited, or we were dealing with Hospital time which is essentially a vortex that adds about 4 hours to any time a doctor or nurse gives you. "Oh we'll do surgery at 7am" actual time: 12:30pm...

So anyways Owain is back in surgery, and this time they are doing an open surgery complete with an epidural. Hopefully third times the charm.

Oh and HAPPY BIRTHDAY TO ERIC FROM DORNBECKER AND ALL THEIR EMPLOYEES. "We strive to make your experience as painful as possible!" - Love Dornbecker.

-UPDATE 4:28pm We just got called by one of the Nurses in the OR. He is doing great, they are closing up, his epidural got installed well. That beat the last surgery by 2 hours!

So everything went well. Owain is a Champ. Apparently it was a pretty trouble free surgery, which took approximately 4.5 hours to complete. Our surgeon told us that there were 2 openings in his patch. One on the medial side and the other on the lateral side. They stitched everything up, added more patch on the medial side and viola! Owain is now a Pirate squared on the inside and a Warrior cubed on the outside.
It is pretty amazing they did all of this with 3 little holes. So now instead of just having a scar that looks like he was attacked by sharks, it now looks like he was attacked by sharks with freakin laser beams attached to their heads. That's what we are going to tell him to tell all the ladies. (not like he is going to need any extra help getting the ladies)

Owain is recovering fine, he definitely is in pain so he has a strict regiment of morphine, which hopefully should go away soon. He is fussy since he has not eaten in over 13 hours, and is having a hard time resting since he has been under for so long.

We are preparing ourselves for a wonderfully comfortable night in the hospital on our sub standard size bed that is "suitable" for 2. I am now off to get some Hot Chocolate for Amber. She is sooooooo excited!

Man, we are tired! We had to be at the hospital at 7:00am. Quite a feat for a guy who works the swing shift, a child who decided to wake up at 3:30 (wide awake) and a wife who couldn't sleep because of the pending surgery. Well, we made it, and were promptly whisked away to wait for two hours... We are so tired.

Finally the anesthesiologist gave Owain his happy juice, which made him extremely loopy. It was pretty fun seeing him so messed up for some reason. It pretty much multiplied his "hammyness/flirttyness" by 10. This happened around 8:45, and about 9:00am they took him in to surgery.

It is 1:42pm, we have been contacted by one of the nurses once 2 hours ago. Apparently, Owain is remaining stable, they found the breach in the patchwork and Dr.Zigman is going to perform a minimally invasive surgery.

It just seems like its taking F O R E V E R! But good news on the minimal invasion eh?

Heres hoping that everything wraps up soon.

Only five and half hours before we have to wake our little warrior up and all load up our weeks worth of clothes,some of Owain's favorite things like his blue blankie, stuffed Winnie the pooh dressed up like a bunny (his first present from the easter bunny this past March.),some of his favorite toys.Once we are all securely in our seats we will be headed to the hospital.

And I can't sleep.

I am anxious for Owian's surgery tomorrow. Looking at him you would never know that he needs a surgery. Looking at the x ray and CT scan tell another story.We know that he needs to have his bowl moved back to it's proper place and his patch fixed before it becomes a serious issue.

Even though Dr.Zigman has reassured us of when Owain had his first repair surgery at seventeen days old he was very sick. So sick they brought the operating room to him in NICU and he managed to pull through with flying colors. He surprised all the Doctors and Nurses. We kept hearing "oh he will get sicker before he gets better" Whenever we would hear this comment we would tell our little warrior "prove them wrong buddy" and he sure did! Five days later he was off the vent and only on Oxygen and we finally got to hold him for the very first time!

A week later he was breathing on his own and three weeks after surgery we brought Owain home! Once his stomach and bowel were placed thats all he needed to get better. We were so proud of our little warrior and still are!

This time around is different Owain is healthy.Except for a little bit of bowl hanging out by his left lung. We are expecting his recovery to be a breeze. We know that anything can happen during surgery but we are hoping and praying that everything goes smoothly with no complications.

Thank You for everyone who has and will be praying for our little warrior tomorrow.

We believe in the power of prayer!!

We will keep everyone posted.

Now I am going to try and get a few hours of sleep before our alarm goes off.

Goodnight!

It's time for Not Me! Monday's. I know I have been out of the loop for the last couple of Monday's but I am back and ready to share everything I would dream of never doing.


Sometime last week I did not try to attempt to check my email with my almost ten month old's help and he did not decide that it would be a good idea to help mommy with her "to be filed folder" that was in a nice and tidy basket on the bottom shelf of her desk. He absolutely did not make a mess with all of mommy's important papers. After all if they were really important paper's they would be filed safely in the file cabinet,right?I did not turn thirty on the fourteenth and to celebrate my husband and I went out with some of our good friend's and I did not drink for the first time in two years and late in the night I did not get sick. That was NOT a reminder of why I am not a drinker!

The whole time we were out I did not miss my baby!!!

Today I am not packing for the hospital and trying to get caught up with all of the house work because my sweet baby boy does not need to have his second surgery tomorrow and I am not scared for my baby because us mom's never worry about out children,right?

I haven't been so stressed out about tomorrows events that I broke out into hives and they aren't itchy!

Last night we didn't go to a pot luck and I didn't have one to many cupcakes with chocolate frosting and I absolutely did not give my baby a little taste and he didn't go "MMMmmm" What Kind of mother do you think I am? Giving her baby frosting!!!

My brain is never scattered. I never forget or just simple get dates wrong and almost forget to wish one of closest friends a happy birthday! on her special day.

My husband is not a year and five days younger than me. He is not turning twenty nine the day after Owain is NOT having surgery and we will NOT be in the hospital. Nope not us!

My dad and step mom did not forget to call me and wish me a happy birthday because I did not turn thirty! I wasn't disappointed that they forgot because I did not have a birthday!

I would never let my baby boy crawl around naked and help me with the laundry.Nope not me!

If you would like to check out more of NOT ME! MONDAYS. Check out My Charming kids the creator of Not Me Mondays.

A few minutes ago....
I quietly tip toed into our bedroom trying not to disturb our little man as he was safely sleeping in his crib and this is what I saw....

Priceless!!!

Yup folks you heard it correctly today I turned thirty!!!!

It's funny I remember being a young child thinking "man thirty is old....it's down hill from then on"

Well I don't feel old at all.

I feel fabulous!

I am excited for my next thirty years!

Bring it!

Sophie is in surgery as I type this. She re herniated for a second time. Please pray for her,her surgeons and her wonderful parents. If you get a chance wish her daddy Kenny a happy birthday!

It's crazy in six days we will be in the same position as the Miller's and it will be Owain's daddy birthday too. What a way to spend a birthday.

Please keep Catherine and her family in your thoughts and prayers. Today is a big day for her she is having surgery to put in a trach. Hopefully this is what her little heart and lungs need to give her body a rest.

Baby Carter had his repair surgery this past Thursday. He is still on the ventilator but it sounds like he is headed in the right direction. Please keep him and his family in your prayers too as he still as a long way to go in his recovery.

Nayeli is doing great! She just moved from the level three Nicu to the transition Nicu. That means she is getting closer to be going home with her mommy and daddy!Woohoo!

Lizzyjo had her repair surgery on the 9th of November. She is recovering quite nicely. Pray that she will continue on the right road to recovery.

Welcome to the world Sydney!Sydney started her fight against CDH three days ago. Stay strong Sydney you can beat CDH's booty!

Please keep the Kostjuk family in your thoughts and prayers as well they are going through a very difficult time their sweet little girl Reese lost her fight against CDH on her first birthday.Breathe easy Reese.
Ava is slowly recovering from her re herniated surgery a little over a month ago. She is headed in the right direction. check out her blog her mom Terri posted some darling pictures of Ava smiling. From looking at the picture she looks like she is feeling better.

I remember a little over a year ago when I first was learning of this devastating birth defect CDH. It was the first I have ever heard of this birth defect. I didn't know one person or child born with CDH. None of my family,friends,co-workers have ever heard of it either.Now that I am aware of CDH I am meeting new families that are expecting a child who will be born with CDH. CDH is way more common than I ever imagined .

When Owain was born I learned how powerful the power of prayer and positive energy can really help. I honestly believe with out our friends,families and strangers giving us support. Praying for our little man. Believing in him. They are what gave us strength to be strong for Owain. I will always be incredible thankful to everyone who had a part in Owain's recovery.

Whether you made us home cooked meals,gave me rides to or from the hospital,let us cry on your shoulder. or simply Leave a comment it all meant the world to us.Thank You!

Please keep all of these amazing families and their little warrior's on your prayer list!

Here is a picture of Owain with his daddy getting his CT scan. Daddy forgot his camera but when of the techs had one and asked to take a picture of Owain because he was one of the youngest to ever use the CT scan and absolutely adorable how could you not want to take his picture?

Today was a pretty good day Owain's great Aunt Shannon and second cousin Kristen stopped by for a visit. They haven't seen Owain since he started crawling. They were very impressed with his new moves.

As you can see by the picture Owain is in pretty good spirits. Overall he has been his happy self.Except for last night he woke up several times crying and every time I would check on him I could hear his bowls gurgling and he would let out some really big farts.I felt so bad for my little man. I am assuming that his bowls are acting up after all part of them are behind his left lung.Only eight more days until surgery. I hate the fact Owian has to have another surgery. I also hate the fact that we still have to wait eight more days! I understand that this is not a critical situation but I would really like to get everything back to it's proper place before it becomes critical! So in the mean time we have been keeping a close eye on Owian for any changes in his temperament and whether or not his bowls are doing their job. So far so good.

Off to Grandma's house we go....

This afternoon we went to grandma P's and Owain had so much fun! After all grandma has a lot of neat things to check out and get into!

Like this cool big boy rocking chair!

Oh and the blinds! Way fun!

I am going to make this short because I am exhausted. We finally have an answer yes Owian did re herniate and he is scheduled to have surgery on November 18 (the day before his daddy's birthday). As of right now Dr.Zigman doesn't see it as urgent. So he should be ok to wait ten days.

I am happy we finally have some answers even though they weren't the answers I was hoping for. I had a gut felling that Owain would need surgery. The good news is he is stronger and healthier than when he had his first repair surgery at seventeen days old. If all goes well he should recover like a champ. I have faith that he will do just fine after all he is our little warrior...born to fight!

Thank You to everyone who has left a comment of support. I love reading them!

After 4 hours at OHSU, we got our Ultrasound and CT scan. The CT scan is pretty amazing. I would encourage anyone that ever gets a CT scan to ask for the images to be put on a disc. Since the images require a special viewer, they bundle it on a CD for you. Then you can create videos/pictures of the 3d image and apply transparent colors to specific data types(ie Muscle tissue, bone structures, air bubbles and more if your computer can handle it or may require XP pro) So while playing around with Owain's CT scan data, I compiled a few video clips of his internals. I am not a Doctor, Surgeon, Radiologist, or trained in the medical field what so ever, but from my exploration in Owain's body I found a couple things that made me *gulp. I am not saying that Owain will definitely need surgery, but from what I pulled from the data, it looks much more likely(to someone untrained in the medical field). Again we are waiting official word from our Surgeon, Dr.Zigman. We should know by tomorrow.

here are the vids(don't be too concerned since I do not have the credentials to make a diagnosis):

#1(shows a slice the questionable area of his left lung)
#2(same section as #1 w/ different transparency preset)
#3(same section as #1/2 w/ different transparency preset I belive the little streak is the patch)

The little box in the lower left is a position reference
L=Left
R=Right
A=Anterior(front)
P=Posterior(back)
S= Superior(top)

I just spoke with Eric they weren't able to see anything on the ultra sound so they ordered a CT scan. Now him and Owain are waiting for our insurance company to approve the CT scan. Their just hanging out in the waiting room. I don't know what this means? Is it a good sign that they couldn't really see anything?Hopefully we will get answers soon!

I am at home with Cian (Owian's best buddy). I am always bummed when I am unable to go to Owain's appointment but I need to bring in some money.Especially if Owain does end up having another surgery and hospital stay. You know I will be their 24/7 if that happens. I am praying that doesn't happen.

Please keep our little warrior in your prayers!

Thank You

Today Owain has his appointment with the Ultra sound technician. Hopefully they with be able to get a good look at his diaphragm and we will have some answer really soon.

As soon as we know anything new we will let every one know.

Thanks for praying for our little man!

Well we didn't get a call from OHSU yesterday to make an appointment for Owain's ulta sound.
So we are going to call his Surgeon and hopefully get an appointment soon! I am tired of this waiting game! We need to get this ball rolling!

We are on our way to meet Owain's Grandma P and Great Uncle Rusty for breakfast.After breakfast hopefully we will have an appointment lined up.

I will keep every one posted as soon as we know anything. On the up side Owain seem to be doing great. He is happy and full of poop! That is a really good thing that means his bowl is working! Woohoo!

Have a great day!

Great Grandma Judy I hope you have a fantastic birthday. I made you a very special birthday card. I painted it all by myself! Well mommy and daddy helped a little mostly with the clean up.Look at me I am an artist!
Great Grandma I hope you like it! It's my first finger painting just for you!
That was fun! Lets make another one!

Great Grandma if you are reading this and your wondering why you haven't received my master piece in the mail yet. Thats because mommy is in charge of getting it to the post office and we all know how mommy can be?

Happy Birthday!
Love,
Owain

We have had a pretty good weekend considering we are on pins and needles waiting to find out if Owain is going to have yet another surgery.I am anxious for Monday so we can set an appointment for his ultra sound.I want answers and I want them now! I never have been a very patient person especially in situations like this.I am hoping that we will be able to get Owian in tomorrow. I am afraid if he has re herniated and we wait any longer then we might have to worry about him having a bowl obstruction. He hasn't been showing any signs of a bowl obstruction. Which is a great! He has been passing gas,normal bowl movements,no vomiting. Other than a little cough from his cold he has been his happy self.

To keep our minds off of everything we have been enjoying every minute we have with our little man. Yesterday we ran some errands and later in the evening Owain's Grandpa P came over to baby sit Owian while we went out to dinner with my best friend Erin (Owain's god mother).I was a little nervous to leave Owain under the circumstances but I new he would be in good hands with his Grandpa and it was only for a few hours. Owain had a great time playing with Grandpa and staying up past his bed time.I am so thankful that Owian has so many wonderful grandparents who love him.

Today we have just been having a nice relaxing day at home as a family. Owian made something very special for his Great Grandma Judy's birthday which is tomorrow. It is top secret I can't show you until tomorrow but I will tell you after his project he needed a bath!

Thank you to everyone you has given us support and sharing your stories. It really helps knowing that we are not alone and if Owain has re herniated it is not the end of the world just another bump along the ride that I know our little warrior can handle.He is our little fighter and if he can beat CDH once, he sure as heck can do it again!

Back in march when our little warrior was six weeks old and out of the woods we were finally able to bring our baby boy home and be a family. I was so excited! Their were times during his fight against CDH that I was terrified that we would never have this day. I was on cloud nine our baby boy is going home and he is healthy. Since that day my biggest fear was Owian re herniate. I new since he was missing 90% of his left diaphragm that he could very well reherniate. Now my biggest fear might be come a reality. Yesterday after Owain's xray we took a look at them with his surgeon Dr.Zigman. I immediately new something was wrong. I am not an expert but I have seen enough of my son's xray to tell that something was wrong. Dr.Zigman confirmed it when he left the room with the xray to compare to his last xray taken five months ago.He never leaves the room with the xray at any of our other appointments. After a few minutes Dr.Zigman came back with the xray and explained to us " It looks like maybe part of the bowl is either poking through his diaphragm or it's just pushing up on his diaphragm. " I immediately started to panic on the inside. I was trying to remain calm on the outside. I was thinking this is what I have been afraid of! I don't want my baby to have to go through another surgery,be incubated. I have seen so many other CDH babies have to go though another surgery and each time it breaks my heart and now their is a possibility that Owian will be next. I am trying really hard not to freak out here! Dr.Zigman ordered an ultra sound to get a better look. I was ready to go from his office to get the ultra sound but we have to wait until sometime next week! I hate having to wait! Being a Friday and Dr.Zigman didn't see it has being urgent he felt Owian will be okay. Now we just have to play the waiting game.The good news is Owain doesn't seem to be in any pain. He hasn't been showing any signs that he might have re herniated. He is still eating and is his happy self.

On a happy note Owian finally got to meet his god mother Aunt Erin. It was great to finally be able to introduce them. She didn't come empty handed. She brought Owain some really cool toys.That were a big hit! Thanks Aunt Erin!
Later I dressed Owain up and walked him over to his best buddies house. Aren't they cute? Our little bear and pumpkin! Happy Halloween!

As soon as I know more I will let everyone know ASAP. Please keep our little warrior in your prayers. Thank You!