Ten Months

Look who's 10 months old!!

You are sitting up like a champ and you would PLAY so much longer if your little body would keep up with you. After 15 minutes of sitting and playing, you throw yourself back and just need a BREAK! Laying down doesn't stop you either... you just roll from side to side getting anything you can get your hands on. Chewing and slobbering every toy in the house if your main focus right now. Thanks to all that chewing work... you've got SIX teeth and more on the way!

We keep trying to show you how to crawl, but you have us figured out. If you learn to crawl, then you won't get the luxury of riding on mommy and daddy all day. Walking is definetly NOT on your to do list!

You don't say many words.. .mostly just vowel sounds, but we just KNOW what you want. You open and close your mouth when you are singing and talking... the best part is... NOTHING comes out! When you do this... we all laugh and mimic you so that you will continue doing it because it CRACKS us up!! You continue your passion for REAL food. How dare we continue to offer you that mush out of a jar when we are eating the GOOD stuff! If we can eat it, then so CAN you!
Most of the time you are HAPPY and SILLY! You have figured out that if you cry or complain "na, na, no, no, na, na" then SOMEONE will most definetly come to your rescue. You have also learned that if you kick your leg a little harder or scream just a little louder it speeds up the response time. Mommy and Daddy have you all figured out though... it's Sissy that gets suckered in everytime!
CUDDLING is our favorite activity with you!! Mommy, Daddy, Sissy (just about anyone) will cuddle you anytime or anywhere! You know that if we're holding you and we are ready to set you down, all you have to do is lay your head on our shoulder and we MELT!!

HAPPY TEN MONTHS MR. OWEN!

What a Night

10 is the number of months that Owen is today!!

20 is the number of lb's that he weighs.

29 is the number of his inches from head to toe.

38.5 celsius was his temp (which converts to 101.5) when we finally called cardiology today

68 is the percentage of oxygen that he was at when his lips were blue

1.5 is the liters of oxygen that I had to crank him up to in order to reach...

80 percent... which is acceptable

10 is the minutes it took cardiology to respond to my call

5 is the hours we spent in the ER at Phoenix Children's

0 is the time we spent in the PICU

1 is the number of tries that it took to get his IV in... YEAH

4 is the number of blood tests they ran

12 is the number of his white blood count... this translates to NO infection in his blood

40 is the number of minutes it took Dr.'s to confirm his chest xray was A-Okay

30 is the minutes it took us to get home

8 is the hours of sleep I can't wait to get in our OWN beds tonight!!!

Happy Thanksgiving!

Does anyone else feel like they're going to POP??? Seriously... why are there SO many delicious choices at one meal?? And why do I have a bottomless pit for a stomach?? I think I gained 10lbs today. After dinner, we took a walk and soaked up our gorgeous post rain weather!

Mr. Owen LOVES to be outside!

Kamryn digging up "treasures"
Oh Dad... what is that silly face??

Grandma, Carson and Mom... say TURKEY!!
These rugrats hardly ate anything... so of course they had more than enough energy to wrestle on the floor.

I am Thankful for....

My loving, carefree, make me laugh out loud hubby...

My smart, artistic, witty, beautiful Kamryn...

My hip riding, rasperry spitting, miraculous little Owen...

Our famlies and the support they give us...

All our friends out there...

My Faith...

I hope you all had a wonderful day filled with family, friends, yummy grub and full of THANKS!!

Rainy Day

Rain, Rain go away stay! This is what we woke up to this morning... it's wonderful! It's a bit chilly, it's wet and I opened all the windows to soak up the fresh rain smell!!
Kamryn: "Mom, since it's raining... can I stay home from school today?"

Me: "Hmmmmm...... Honey, what do you think?"

Dad: "Whatever"

Me: "Yeah, you can stay home! It's Thanksgiving Eve, it's a rainy day, just stay home and chill"

Kamryn: "So, MOM, Can I really stay home today??"

Me: "Yes dear, you can stay home!"

FIVE MINUTES LATER...

Kamryn: "So, I DON'T have to go to school today???"

Me: "Nope, just stay home"

Kamryn: "YEAH! Where's the phone so I can call Grandma"

Now we lounge around in our comfy pj's, RELAX, and listen to the pouring rain! Did I mention I LOVE THE RAIN!!?? (For those of you that don't know... we live in Phoenix and RARELY do we see rain ... it's one of our little pleasures to have the sun hidden for a day!)

Waiting for Daddy...

I look forward to 4pm every afternoon. Kamryn comes home from school... Owen is THRILLED to spend time with his big sis... I don't have to start dinner YET and we wait for Daddy to come home!! I love hearing about Kamryn's busy day at school. She is usually eating a snack ... today's choice is chocolate chips... can you blame her? Owen thinks he is the luckiest boy around because sissy is sharing her sinfully delicious chocolate chips with him.

I plopped Owen on Kamryn's back so that I could run and answer the phone ... when I came back he had his chubby little fingers tangled up in sissy's hair. What a HAPPY BOY!!!
And we can't wait for daddy to come home....

PS... the photo is blurry cause I messed around with my ISO settings... going back to AUTO mode.

In LOVE

I have never been much of a reader... I can't tell you one book that I ever read as a child. I don't enjoy curling up in bed with a novel and reading for hours. My mind wanders, I think of a million other things that I SHOULD be doing and then I realize that I've read a whole chapter and have NO idea what I read. So I read it again... thus the cycle continues. A few months back, I realized that I was the ONLY one that hadn't read the Twilight series..... come on... a series about vampires... immortals??? SO WEIRD!! Who reads that garbage?? I borrowed the book from my sis-in-law and after the first chapter I was HOOKED ... couldn't put it down. I read the first two books within two weeks.... (yes, I am a slow reader and it doesn't help that Owen tries to eat the pages as I read). I started the third book... am halfway through and then I got stuck.... back to my old ways. I have read chapter 13 OVER AND OVER again... will they ever graduate??? I decided to wait until the movie came out in hopes that I would get motivated to finish the series because I REALLY DO want to know if Bella becomes immortal... (it better reveal this in the 4th book or I vow to never read again!)

I fell in LOVE with Edward tonight... sorry Carson. At first, Edward was NOT as I had imagined. He had lipstick and makeup on... seriously...that is NOT how I envisioned Edward. As the movie went on... he stole my heart. Needless to say... I'll be neglecting my household duties this week as I disappear into book 3 and 4! I wonder if I could pull off Bella's chocolate hair???
Back to reality.... Owen has been doing FANTASTIC!! He is SO playful, happy, alert, eating everything in sight (still no formula, bummer), and he just looks healthy!! He's on 1/2 liter of O2 and his sats are in the mid 80's. I'm going to start weaning his O2 a little more after the weekend and we'll see how he tolerates it. We are SO thankful that he has made such an improvement on the outside. We know he's still REALLY sick on the inside, but we are BLESSED to be home and enjoying life.

Check out the TWO new teeth on the bottom!

We're still waiting to hear from LA... I'll call cardiology this week if we still haven't heard. It'd be nice to know if we'll be home for the holidays.

Prayers ARE Answered!!

After 20 hours in ICU, we are HOME!!! The Dr.'s were amazed at how GOOD Owen looks, his energy has been renewed and he's down to .5 liters of O2??!!

I arrived at PCH with Owen at 4:00 and we walked right into our PICU room. Owen looked exhausted, pale and ready for some drugs. The Dr.'s ordered his PICC Line, EKG, ECHO, and Chest Xray. We did the last three, but we were waiting on the IV Team. Thankfully, we waited LONG enough... the cardiologists came in to do their assessment and get a list of his meds to order and within just 30 min of being there... he looked pink, happy, alert and his sats were in the mid 90's on 1.5 liter of O2. The Dr.'s put a halt to the PICC Line and said they'd just moniter him for a bit. Another hour went by and he was still looking great... ALL his tests came back perfect, no infections in his blood, nothing viral on the nose swab, EKG is stellar and his chest xray showed the same giant heart with clear lungs. The Echo is never great, but it wasn't worse than Oct 15th when we were there for the cath, so they didn't worry much. They decided to change his status to 24 hour watch and NO PICC line.

This is how HAPPY we were!!!

Then Owen got REALLY excited and picked my nose just as I snapped the picture..
Then they told him he needed an IV just in case they needed more labs.

This is how I found him at 1:30am... he had a gang of nurses around his crib and he was SHOWING OFF!!

During rounds this morning, they said "You can go home and hopefully we hear from LA shortly!" WOO HOO!!!

It's GREAT to be home!! I have had a wake up call and realize it is time to prepare myself for LA.... it's coming soon. Owen's heart function is still BLAH, and his tricupsid valve is no longer moderatly leaky, but updated to severe. We will be in LA SOON, but it's nice to know that we can wait at home! While we were in ICU, I had time to speak with differnet cardiologists, nurses and the surgical team and get their opinions on their LA counterparts. Such great information to take with me and I feel like I'm not walking into everything AS blindly as before. I wouldn't have had this opportunity had I not been there. I believe ALL things happen for a reason!

Thank you for all your prayers!!!!!

NOT GOOD NEWS

We got the dreaded call....

I'm taking Owen to Phoenix Children's to be admitted NOW! They have his room ready and waiting. I guess they didn't like his echo. They want to get him started on Milrinone and speed things up with LA. I'll be living in PICU E again ... cruddy.

I asked if we could just bypass going to PCH and leave tonight for LA?? They don't think it's safe to drive with him in the car for 6 hours to LA... they want to airvac him when ready.

I thought I was prepared for this next journey and find myself totally LOST!! Kamryn keeps asking the logical questions that I never think about...

"When are we leaving for LA?"
"Will I go with Daddy?"
"What about School?"
"My school program is tomorrow night... will I miss it?"
"Will we have Thanksgiving in LA?"

I wish I had answers... maybe tomorrow??? For now... I will allow myself to cry! I know it's redundant... but PLEASE KEEP PRAYING!!!!

Waiting for a call....

Owen is HOME for now. He had an echo and bloodwork done at 9am. The cardiologists will get the results, put their heads together and call me this afternoon. The echo looks about the same (to me) which isn't good, but not worse like we feared, but I could be wrong and I don't really know. Then.... I rushed home to get Kamryn to the pediatrician and we have yet another case of strep throat. I LOVE when it's strep because it's treatable and Owen can't get strep! Kamryn is thrilled to be staying home once again and is excited for the PINK medicine?!

Thank you for your prayers! Owen is still out of it, tired, crabby and his oxygen is up to 1.5 liters. We're just waiting for the phone to ring....... (with GOOD news)! We're also getting ready to pick up and go to Los Angeles when they say GO!

Prayers for Owen

I finally broke down and called cardiology. As I explained in an earlier post, I have a sleepy little man on my hands. Not only that, but his sats have been dropping into the high 60's... even at a liter of O2. They wanted me to bring him in and admit him but I said let's just crank up the oxygen and see how he does tonight. ANYTHING to stay out of the hospital!!

I'll be taking him in to cardiology tomorrow for another echo and bloodwork. I suspect that if anything is abnormal that we will immedietly be admitted. Since he is maxed out on all his meds, our only other option is IV meds until we hear from L.A. What a BUMMER!!

It's all so deceiving because he looks so GREAT, he's HAPPY 99% of the time, his hair is getting thicker and he is sprouting FOUR more teeth! That's why the (not so fever) fevers didn't bother me so much. If only teething affected your Oxygen saturations, we wouldn't have an issue.

Say a prayer, or two, or three for Owen....

Sleeping

This is how Owen has spent the last two days....
He has had a few MINOR fevers (if you can even call them that) and he has been extremely sleepy. When he is awake, he is a bit moody and just wants to snuggle. What could be wrong with Mr. Owen?? Is it teething?? Is it his heart function decreasing more?? Or, is it a little bug?? We will wait ... and SLEEP.

Me and My Guy

Not my BIG Guy, but my LITTLE one!! It is Saturday and I am bored. Carson is playing his Fable II, Kamryn is playing Pokemon on her DS, Owen and I are just plain bored. I was going to bake some cookies (which I may still do), but I can't just eat ONE... I eat a TON... then I get sick... and I know you ALL know what I'm talking about. So Owen wanted to play with the camera and PLAY we did!! He's trying to figure out why I'm in the picture WITH him... I'm usually on the other side of the lens. Doesn't he look SO embarassed in this one?? "Stop kissing me on camera mom!!"
I had to increase his Oxygen AGAIN and now we're up to a liter. He keeps dropping into the 60's and that just isn't acceptable. I've been organizing things around the house procrastinating ... I just have a feeling that things are going to happen quickly with him and LA. I don't want to leave Carson here with SO much to deal with, so I SHOULD get started. But not today... I will go make cookies instead! Speaking of cookies...Owen has a NEW beverage of choice.... ICY COLD MILK!! THANK YOU for the jogging stroller Panfi... I took Owen jogging last night and it felt wonderful painful, but I will go again tonight anyway!

Christmas in November??

I couldn't WAIT any longer!! I had to turn the blog Christmas style. YES... I am aware that it's not even Thanksgiving yet, but this is my FAVORITE time of year and I just wanted to get an early start this year. Go ahead and turn the volume up...I even added the MUSIC to go with it. I bet you can't guess which song Kamryn picked out???

Flu Shot!

I stopped putting it off....I finally took the kids in for the dreaded Flu Shot. I am so thankful that Cardiology won't allow me to immunize Owen yet... that one flu shot was enough to break my heart! Here were his 9mo. stats... READY FOR THIS???

Weight: 19.7lbs --25%
Height: 29" -- 30%
Head Size: 19.5cm -- 100% plus... he's WAY off the charts! We LOVE that head of his!

Guess who's getting more teeth??? Look REALLY close to the bottom two... you'll see a pearly white on each side!
Kamryn did a fantastic job at the school spelling bee yesterday, we are so PROUD! This was Kamryn's FIRST flue shot and she is now itching from head to toe. It's just a minor side effect, but I was told to watch for shortness of breath and swelling in which case I am to call 9-1-1. Needless to say, she is THRILLED to have the day off of school thanks to her reaction and REALLY wants to play VIVA PINATA, but is too ill to do her homework. I remember those days!!!

Cardiology Update

Owen had a visit with Dr. Stock today... including the anticipated echo. Things aren't looking any better in that heart of his. I'll use a picture to explain.....

Do you see where the blue arteries form a "T" in the image... I circled it and labeled it 1?? This has signifcant narrowing which is backing up blood flow and causing the heart to work harder than it normally would.

Now... do you see where the tricuspid valve is circled and labeled 2.?? This is moderatly leaky which is causing the blood to regurge back into the right atrium causing more workload on the heart.

Due to all the extra workload on his already weak heart... his function is decreasing.

We have decided to have ALL of Owen's cardio records sent to UCLA and Children's Hospital of LA for followup. We should hear back in less than 2 weeks. We scheduled a followup with cardiology for four weeks out and Dr. Stock said "If you're still in Phoenix we'll see you in 4 weeks, if you're already in LA, we'll just cancel." ALREADY IN LA??? I better get things organized around here and in order because it sounds like everything could happen fairly quickly. Mr. Owen is always keeping us on our toes!

There are other hospitals we are considering... BUT... flying isn't the best idea with Owen right now. Not only are there a bazillion germs on an airplane, but he is also on Oxygen and the airline requires you use their Oxygen. Then we would have to arrange to have a tank delivered at the airport upon arrival... and WOW... what if it doesn't? So we drive! Six hours to LA sounds a lot more tolerable than some of the alternatives. We'll wait to hear back from both LA hospitals and we'll just KNOW. We will go with what we FEEL is right and if neither hospital is it... we have kept our options open.

We also got great news from the insurance company! If Owen becomes a transplant candidate in California, which is REGION 5, then our insurance will also pay 100% for us to be listed at another hospital in another Region. IE: Seattle Chidlrens, Denver, Texas... it would have to be close enough to travel if a heart did become available... but it's a HUGE benefit and could potentially increase his changes at receiving a heart.

Eating 101

I never thought it would take me NINE months to teach my baby how to eat! I never knew that it could be such a challenge. It's food and we all LOVE it!!! Sometimes... we enjoy it TOO much! Who'd have thought that there would be anyone out there that doesn't know how to eat or simply refuses?? I've had a crash course in feeding therapy and that's why I call this blog entry Eating 101. I am not quite the expert, as I won't get that title until Owen rids of his NG Tube.... on that day...I will celebrate!! In the meantime.... I will continue doing what works and SHARE what I know with the rest of you that are being challenged by your babes.

Twice a week we have feeding therapy. Once at home with our OT and once through PCH outpatient therapy. During our sessions, I absorb as much knowledge as possible because I know that the rest of the week it's going to be Me vs. Owen. It's never a battle between baby and mom, it's just baby food flying as Owen kicks the spoon out of my hand or spitting baby food at me when he just isn't interested. Our feeding sessions every 3 hours are actually quite humorous and a great bonding time for us! We laugh, make a mess and he laughs at me with me when I cheer him on with each and every attempt at opening his mouth. Oh what a fabulous time we have!

Up until last week I had him eating at least 15 spoonfuls of baby food at every sitting. Keep in mind he'll only eat meat or veges and he has to feed himself the first bite. He will drink water only and it has to be in an adult sized glass and be loaded with ice. He will first submerge his hand in the ice water and stir the cubes around... THEN he will take sip after sip until he everything is soaked!

Some tools of the trade that I have been given to work with and highly recommend are pictured below. The Nuby cup is a fantastic way to teach drinking/eating from a sippy cup. When Owen opens up to drink from his cup I can push from the bottom and the food will come out of the soft spout. The tool on the right is the honeybear cup with a straw inteded to teach drinking from a straw. I can squeeze the honeybear and conrol how much food he gets out of the straw at once. The idea is to get him drinking consistently from one of the cups and then we can get rid of the tube. Sounds easy?? Not so much, but we are making progress. Owen hasn't been in the mood for baby food this week nor for his devices. So after we try and eat for 20 min... we consider it a success (either way) and I let him PLAY!! This comes highly recommended from our occupational therapist as it is a great way for them to get comfortable with the food and it's smells. The #1 trick of the trade is to constantly give him exploration foods... ie: bell pepper slices, frozen waffles/pancakes, beef jerky, biter bisquits, pear slices. ANYTHING that can be chewed, slobbered and turns to mush. When all else fails... ICE CREAM works for us!!

I look back over the last 9 months and I am AMAZED at how far his eating as come!!

FALL IS HERE!!

At last... fall weather has found us. We suffer through 5 months of blistering heat, for in return we are blessed with 7 months of BEAUTIFUL weather!!!! This morning, my sweet Hubby allowed me to sleep in until 7:30 ... this is the latest I've slept in years (our kids usually are up at around 5)! Then he took the kids for a morning walk so that I can crank up the country and scrub-a-dub my house!! What a wonderful life!!!!!

Where do we go from here??

Carson and I met with the Phoenix transplant coordinator this morning and she gave us ALOT of information about hospitals, surgical teams and transplant facilities. What a HUGE decision!! I came home and looked on UNOS.ORG, which is the national organ sharing website, and learned of the hospitals statistics. Click HERE if you're interested or bored... it's fascinating! I searched from LA to Boston and found that the statistics aren't that much different. Some hospitals do MANY more pediatric transplants than others, but I have no idea of the skills of their surgeons or medical team. I'd like to think that they are all amazing, trustworthy, qualified... BUT... they are possibly going to be removing our son's heart!!! That is frightening and we have to choose the best team to do that.

I'd love to travel ALL over the US visitng all the facilities, meeting with the staff and getting to know the area that I'll be living for who knows how long. Ok... that's completely impractical... SO we are going to discuss things over the weekend and narrow down to 2-3 locations to have cardiology send over all of Owen's medical records. We are told it should be around two weeks before we hear back from those facilities. If they feel like they want to take Owen on... we'll take a little vacation and have Owen evaluated. Our major considerations are; locations, medical staff, and statistics of tranplants. We go from there.....

Smart Little Artist

Kamryn has been taking art classes for a few weeks now and here are more of her AMAZING pieces of work! Everytime she sits down to draw something... we are in awe of the finished product. As if this is not enough.... our little smarty pants WON her class spelling bee, so now she will move on to the school spelling bee!!! Kamryn... you are our simply incredible and we LOVE you!

SOOOO Sleepy

I've been a little worried about Owen the last few days. He has been EXHAUSTED! I don't know if it's the change in weather, the excitement of Halloween, if he's coming down with something (no symptoms) or if it's his HEART. As of last week, he would eat around 15 bites of baby food at each sitting and then snack ALL day on different exploration foods (peppers, pears, biter bisquits, frozen waffles, ect). Now he'll just nibble on his exploration foods and take a bite or two of baby food. He tires after 20 min of floor time and prefers to just play peek a boo or sing songs in bed. His color looks great but I've had to go up on his O2 a little every few days. (we're up to 3/4 liter). I may just be over thinking everything and he might be doing fine... only time will tell. We meet with the tranplant coordinator on Thursday morning and I'm hoping for LOTS of info! Then we will have the full workup with cardiology next Tuesday (echo, EKG, ect). Can't wait to see what that heart of his is up to.

95% of the time, we get these SMILES!!!

(Note: that is syrup on his chest.. he sucked the syrup off of his french toast today!)

75% of the time he spends doing this....

HAPPY VOTING DAY!!