Happy Halloween!!

Candy Anyone???? After 2 hour of trick-or-treating... the girls are exhausted and begging to sleep... Owen is naked and sound asleep in bed... the lights are off and I'm ready for bed. It's almost 9:00 and the doorbell continues to ring... should I get it?? No... I'm done... until next year!

Owen had a rough start to the evening. He was NOT thrilled about being dressed up in his lion costume and being blinded by flashing cameras.

Kamryn... well, she just LOVES it!!

It was a whopping 95 degrees on the streets tonight... so as we walked up and down the streets, the kids slowly stripped out of their costumes, one piece at a time. We knew it was time to turn around and come home when the girls started taking off their pantyhose.

This was one of the ONLY smiles in character....

THEN... we stripped him .... NOW he really smiles!! :)

Next up, THANKSGIVING!! We have a lot to be thankful for this year!!

Heart Transplant Centers

I just spoke with the insurance company and these are the heart transplant facililties that we can go to with 100% coverage!!

University of Alabama Hospital
Children's Hospital Los Angeles
Lucile Packard Children's Hospital at Stanford (San Francisco)
University of California Los Angeles
Children's Memorial Hospital (Chicago)
Children's Hospital Boston
The Cleveland Clinic Foundation
Children's Hospital of Philadelphia
Children's Hospital of Pittsburgh
Children's Hospital and Regional MedicalCenter (Seattle)

We are going to be speaking with a care coordinator through the insurance company and also the Phoenix transplant coordinator to educate ourselves and pick the best location. If anyone has any advice, comments or suggestions on a specific facility, we'd love to hear it!!!!

Cardiology Call

I finally got a call from cardiology regarding Owen and the discussion with the cardiologists and surgeons. They discussed another open heart surgery that can be done to take apart the two major arteries that were connected during the last surgery and patch them wider to allow better blood flow. There is a lot of risk involved because he is "low on reserves" and he almost didn't make it out of the Glenn (his last open heart surgery). So risky in fact, that the surgeons in Phoenix don't want to perform it here.

That leaves us with a couple options....

**We can work with a heart/transplant center in CA, UT or elsewhere (depending on insurance coverage) that would be willing to try the open heart surgery and if things go wrong... then we are already in a transplant center. Dr. Stock, Owen's cardiologist, gave me pros and cons to each hospital in California and where one has a fantastic heart surgeon, they don't do many transplants and vice versa. Looks like those research classes in college are FINALLY going to pay off! I'm going to be busy the next few days!

**Our other option is to go straight for a transplant, but he isn't considered "SICK" so he won't be active on the list. There is a fine line here because when they do get "SICK" and are placed towards the top of the list, it's a race for time to get the heart!

Our next step will be to meet with the transplant coordinator and discuss our options. We'll need to do research with the insurance company and hospitals and make a decision on one that will offer the best care. Not only that, but we need to make sure it's the RIGHT decision for the entire family. We also have Kamryn to think about, Carson's job (which provides insurance) and so forth.

After the options are narrowed, we will have our team of cardiologists speak with them and we will travel to do a consult of Owen. We'll go from there. It's frightening, but we have a strange peace about the whole situation. We know that we'll be taken care of and that Owen will be okay. I can't help but think of the last 9 months and how much we have been through and we are better than OKAY! So this is another journey and we will find the joys in it and enjoy the ride.

Mr. Owen is Nine Months

Happy 9 month Birthday Owen!!

Look how far you've come!

* You love to laugh, smile and play!

* You love to sit up by yourself... but be careful cause you still fall over

* You roll from tummy to back, but NO amount of persuasion will get you back to your tummy

* You love to chew on EVERYTHING -- sorry for pulling the paper out of you mouth today

* You have the most adorable smile!

* You are Mr. Social and smile your way into everyone's heart!

* You LOVE food... anything that is full of flavor and textures... sorry formula and baby food, you just don't make the cut!

* You are the toughest little guy I know and make your mommy, daddy and sissy so PROUD!

Carvin' Pumpkins

One of my favorite things to do the week of Halloween... CARVE PUMPKINS! I don't know what I love more... the gooey mess, the smelly seeds, or the cramps I get in my wrist from sawing out the pieces!
I remember carving pumpkins when I was little and we would draw the faces on with markers and then carve it out with a knife. These days, we get the "pumpkin masters" kits so that we can torture ourselves into thinking we are REAL pumpkin masters. Kamryn always picks the most challenging pattern and this year was no exception. There were tears shed when she cut off the kitty's tail and whisker, there was cramping in our hands as we poked and sawed 4 patters on 3 different pumpkins, but the time spent with the kids was priceless. They had SO much fun!! My dad provided the entertainment of eating the raw pumpkin guts (so gross) as the kids gagged and giggled.

When they got restless, we took a walk and played at the park. They filled their bellies with Pizza, Lemonade and Halloween rice krispy treats for desert.

**I put Owen back on Oxygen cause his sats are showing mid 60 to mid 80. It's been so random. I ordered a new oximeter and probes... but until they arrive today... we are going to stay on the safe side. Guess he's used to stuff being up his nose... it doesn't even bother him?!

Guess Owen loves pizza??? This boy eats everything!!! Why can't he eat formula and baby food??

Now we have encountered a new challenge... How do we keep the pumpkins from rotting by Friday?? I put the pumpkins in the fridge... now all of our other food smells and tastes like pumpkin.

Our Little Vamp

Kamryn went trunk-or-treating at my parents ward last night and had a Vamptabulous time! She came home with TONS of candy that she won't eat because she doesn't like things that stick to her teeth. No one has to know that we'll throw it in our bowl and hand it out on Friday?!

Kamryn LOVED this vampire costume the minute she saw it but the stores wanted $45 for it... wanna know our secret?? We buy costumes on Ebay in September! This one was only $7.99 brand new! Tonight we are making rice krispy pumpkins, carving jack-o-laterns and having a sleepover with cousins ... on a school night!!!

Lil' Pumpkins

One week off school wasn't enough... the kids have half days this week for parent/teacher conferences. So, we had extra time for some more fun Halloween crafts. Yesterday, we painted pumpkins and they turned out super cute! It was inexpensive and entertained them for at least 3 hours... the girls had a great time!

Can you tell which one Kamryn made to look like Owen??

I took the kids to Target for some $7 portrait packages.... let just say we got what we paid for! Our of about 15 pics per kid, we ended up with one good one each. I've had better luck in the past, it was just the novice photog. We're having a photographer take our family pictures after Thanksgiving....those will be much better!

**These are actually pictures of pictures and since I'm not good at taking pictures, these pictures actually are better pictures than what you see here.... try saying that 10 times fast?!

Finally, a shout out to Owen during feeding therapy today! He ate like 15 bites of his turkey and rice baby food. He'll ONLY eat meaty baby foods and boy did he eat! The secret weapon was this Z VIBE, only we put the spoon tip on the end. He loves things that vibrate... especially his vibrating toothbrush which makes his whole face jiggly. Whatever gets him to eat food... so be it. I'm ordering my own Z VIBE now!

Big Boy....

Or GIRL??

This is what happens when I leave Kamryn in charge of Owen while I shower in the mornings. Poor guy.... he looks less than thrilled to be looking girly! Honey...I think Kamryn needs a sister??!

Owen has graduated to a BIG BOY carseat!! After he hit 19lbs on the scale we decided that the infant seat was just not cuttin' it anymore. He LOVES the extra room to kick and stash his chewables and now he's tall enough to see out the windows! Our little baby is growing up WAY too fast.... maybe in another 8 years we'll finally have baby number 3!

On an entirely different note... I took away Owen's O2 this morning. I was going to wean him from .5 to .25 liters and realized that the tank was completely empty! I totally forgot that those lovely, giant green tanks run out of oxygen. I have no idea how long he's been wearing the nasal cannula with nothing actually running through it? So, I checked the oximeter and he was at 80... good enough for me....so I just took him off completely. So far, so good! I still haven't heard from cardiology and so as much as I'm just wanting to know the plan of attack, it's also nice NOT knowing.

Oh and IS IT REALLY FALL???... cause it still feels like SUMMER to me!! Why is it still 90degrees outside??

Still No Word...

I'm still waiting to hear from cardiology on what Owen's plan of action will be. I'm not sure that I want to hear what they have to say. I just put in a call to Dr. Stock's office... we'll see.

I am off to Costco to buy a new dryer... our 14 year old dryer went caput yesterday. Why does this happen on the day that the laundry is PILED as high as can be?? I usually don't allow laundry to build up, but this has been a crazy week and it was inevitable. So, here we are with no clean clothes, wet clothes in the washer AND dryer and the dryer decides it won't start anymore. $430 later... I will have a white, sparkling clean dryer to match my new washer!

But FIRST, I must do the dirty work of cleaning up the OLD lint and crude that resides under my existing dryer.... really??... does anyone pull out their dryer and clean under it??? It's disgusting!!

Owen's FIRST Bath!

That's right... at 9 months, Owen took his first bath ever! He has always LOVED the shower and it's always more convienient to throw him in the shower with daddy or myself, than to fill up the tubby and get in with him. By the looks of the pics, he was enjoying himself... but this lasted all of a minute and he had enough! Showers it is!
Oh... and we're back on O2! Good thing the home health care continually "forgot" to pick up the lovely green oxygen tanks in our family room. They came in handy this time around. Owen's sats always drop after his caths... but this time he's been dropping into the 60's on room air, so he's on 1/2 liter of O2 to keep him above 80%. For all you non medics... the average person's O2 sats are at 100%, so 60% is just plain not good.

Owen is Feeling Better!!

He's back to his happy self again... a little tired, a little dozy... but HAPPY!!

We're Finally Home

We adore this guy...these were some pics we took in pre-op. They had us in there for a few hours so we were finding ways to entertain ourselves. Oh... and I have I ever mentioned that my hubby is hilarious! I kept laughing, then I would cough uncontrollably ... then the nurses would stop in "are you okay? are you sure you're okay? can I get you something? are you sure?"

SEVEN HOURS LATER.... we were finally able to see him. He was in the cath lab for about 4 of those 7, but the vein in his leg was bleeding constantly for about 3 hours! The amazing Dr. Lamers stood over him the whole time applying pressure to his leg. They kept him intubated until about 9:00 last night... it was aweful! He was crying, wanted to be held, quivering... but we couldn't do anything for him. I finally got the intensivist to take the tube out and that calmed him down a bit. I spent the night with him and he whimpered, tossed and turned ALL NIGHT LONG!! I don't think either of us got more than an hour of sleep total.
He cried all morning, we took off his pressure bandages, started up his feeds again, got him comfy and off his back... poor guy!! This is why we don't use tegaderm anymore... look at his poor neck!! Daddy saved the day when he showed up .. apparently he was upset at me for doing this to him :(. We had to give him versed for his echo because he was just plain CRANKY! Then we had to wait for neurosurgery... that's right...neurosurgery! So, you may remember back about six weeks when we did a brain ultrasound to check the gigantic head of his for fluid ... everything was fantastic! Well, about four weeks ago, Owen developed a HUGE bump on the left side of his forehead and it hasn't gone away, never bruised, ect. We decided while we were already at PCH, might as well have the brain docs take a peek. They decided to do a CAT Scan. We took him down to the lab and they burrito-wrapped him, strapped down his head and put him into the huge machine... he didn't budge! What a relief... I wasn't about to do more anethesia.

Around 3pm, we were chompin' at the bit to get out of there and we were STILL waiting on the brain docs to review the scan... finally, we got word that it's nothing to worry about right now and they'll let us know if they want to followup. Not sure that's a clear answer, but I'm going to let it go and just LOVE on that big, bumpy head of his! An autograph here and there and we are now home... Owen is asleep... and I am in need of some serious shut-eye.

HEART UPDATE:
We are still completely confused about Owen's medical plan, but cardiology and surgery will have a conference on Monday to discuss a plan of action. So far, these seem to be the options....

1. Open him up and try once again to fix the tricupsid valve regurge... the chances of this are pretty slim. Also, he has a giant collateral steming off to the right of his heart, almost to his left shoulder and they can't get to it from a cath, so they would do this while he was open. Another thing they can work on is his Glenn repair. Where the major arteries meet, it forms a "T" shape and at the cross of the "T', there is scar tissue and narrowing, which is affecting his blood flow and pressures. They can open that back up and patch it. I guess the major question with this operation is... will it help???

2. Do another cath to try to stent open the "T" from the Glenn repair and go in from his left arm and attempt to coil off that large collateral that is taking blood flow away from the heart. The question still remains... will it help??

3. When and IF he will be a good candidate for a heart transplant and how to proceed with that.

All the doctors have different opinions, and the truth is... no one knows what will happen until we try it. It's a lot of risk to "try" something to see if it will work. What gives us peace of mind is konwing that the doctors all LOVE Owen very much and they will do what is best for him. We just have to put our trust in their knowlege and faith in Heavenly Father. Thank you for all your prayers and support... we definetly need it right now!! :)

Back in ICU

Owen's cath is complete... they are just getting him snuggled into ICU. They were able to do a little bit of maintenance, but nothing that will help him improve significantly. The good news... they don't forsee him getting any worse. They can do another open heart surgery and TRY to fix the tricupsid valve regurge a little more, but there is no guarantee. Regardless, he will need a transplant.... it's just a matter of buying him time. Cardiology and Surgery will be in discussions with eachother and transplant coordinators to see how to proceed and when.

What a day??!! I'm going to get me a BIG hunk of chocolate cake, settle in Owen's PICU room, and crash on his big comfy sofa (Ok, not so comfy)!

Owen Needs A Transplant

Carson and I are feeling shock, saddness, and completely frightened at the moment. We always knew that his heart wasn't in ideal condition, but we thought he was doing okay. Dr. Pearl, Owen's surgeon, just came out from the cath lab to talk with us. He said he'll be in the cath for a while longer while they do more coiling. He said that Owen's Glenn pressures are high, his tricupsid valve leak is still pretty bad and his function is not great. He said if he were his own son, he would proceed with a transplant. We don't know when he will need it ... it could be soon, it could be in a couple of years... but he will need one. If we went forward with the Fontan, the 3rd open heart surgery to complete his repair, his heart wouldn't be able to handle it. So, our only option is a heart tranplant at this point.

Our next thoughts are going to be where and when to do a transplant. They don't do children's heart transplants in Arizona. So, we would either be heading to Utah or California. We will be saying a lot of prayers and putting our faith in our cardiology team while we decide upon a plan of action.

Please say as many prayers for Owen as you can! Our hearts are aching, our minds are confused, and we just are just trying to enjoy every moment we are given. We are about to embark on a completely new heart journey!!

Quick Update

Owen went back for his cath at 12:30... almost on time! He was all smiles all morning, nevermind the starvation and being in a new place... oh wait... this is his second home :). The first anethesiologist came in to talk to us... risks and such... and then he said we'll be lengthening Owen's leg... oops.. wrong Owen! Glad we got that straightened out! Carson and I took him to the lab and watched him drift off into dreamland, thanks to the face mask and happy juice. He's such a little trooper! He'll probably be in the lab for a few hours and Dr. Lamers isn't sure what he'll find until he gets in there. Regardless of the findings or the work that is done, it looks like we're staying the night.

CATH TIME!!

We are getting ready to head out to PCH for Owen's cath today! Owen is scheduled for a noon cath.... we'll update later this afternoon. Thanks for all the prayers!!

Batty Cupcakes

The girls wanted to do some baking for Halloween ... so we found these batty cupcakes to try. They were not only delicious, but easy enough for the girls to do by themselves!!

It's Finally FALL!!!

The weather has finally caught up with the season and it's finally starting to feel like FALL!! We had the most beautiful weekend with the weather dipping into the 70's!! We took walks to the park, relaxed in our pj's with the windows open and RELAXED.
To top it all off... Kamryn has Fall Break this week... NO SCHOOL! Lots of lounging around, watching girly movies, baking batty cupcakes, playing with cousins and NAPS. We are looking forward to Halloween, fall carnivals, bbqs at the park, feeding the ducks and enjoying the weather that we've been waiting for.
But first... Owen's cath is this Wednesday and we pray that it is goes quick and routine. We're hoping for only one night in ICU and come home.
Then it's WATCH OUT world... we have a little man that's learning to ROAR! He has the most adorable lion costume for Halloween and we're teaching him how to BE the Lion. I can't wait to post pics and video... it's very cute!

I hope you're all enjoying your fall... I've heard it's been snowing in some parts and that's why we live in the middle of the desert. No snow, no heaters, no icy street, no boots, no sweater...it's just warm and toasty...just the way we like it!

"But... I want what you have!"

I can imagine this is what Owen would say if he could actually speak. His eating has REALLY taken off lately and he has been eating everything in sight! Ok... with the exception of formula, which is why we can't get rid of Mr. NG Tube. Dinnertime consists of Owen, charming us into removing him from his high chair and holding him. His intention.... to be that much closer to OUR food, OUR utensils and OUR drinks. Why should he have to settle for baby food or sippy cups at 8months old... what were we thinking??

Last night... Daddy was charmed by Owen reaching out to him saying "aaaaaggghhhhhaaaaggg".... translation "you can't resist me, so do as I say!" After sitting in Carson's lap for a whole... 2 seconds... he immedietly starts eyeing daddy's pasta. This was going to be "HIS BITE!"
After one little taste... he has to examine every bump, groove, crease and color.
Then he goes in for the kill.....mmmmmmmmmmmmmmmmmmmmmm... bite after bite until he takes a chunk off that is just too big to handle.
Then this happens.... I took the fork away so he wouldn't poke his eye out and lets just leave it at, he was not happy.
But wait.... "Mommy has something else I want!!" He found my water... so after 10 min... Owen added a whole new definition to "backwash"! The pasta that he reserved in his chubby little cheeks ended up as floatys in ice water.
After 20 min at the dinner table... our food is cold... Owen is covered in ice water and pasta sauce and it's time for a shower. I wish I would have taken pictures the night before... Owen was going to town on my corn-on-the-cob and Hamburger. What a little character!!!

***Photos in this blog entry courtesy of big sis' Kamryn, as she was too busy to eat her dinner and laughing hysterically at her baby brother's antics. Which was then proceeded by "Can I have Ice Cream for desert".

Cath Date Set

I called cardiology and Owen's Cardiac Cath is scheduled for Oct. 15th. Kamryn will be on fall break that week.... at least she'll have fun with her cousins that day. I hate the idea of taking Owen back in for any procedure. Such a bummer. Looking at the bright side... he should feel better afterwards and be ready to ROAR in his lion costume on halloween!!

On another note... here is a picture of my mother-in-law, better known as Grammy K., holding Owen alongside a picture of Carson when he was the same age....

Owen's gets that cute mug from his daddy!

Sunday Ramblings

What do you get when you take carbs out of your diet (mostly) and exercise a little bit?? FOUR POUNDS GONE in one week!! Not a bad start ... I HAVE to stay focused because Istill have 46 more to lose! My goal is to have them GONE for good by Christmas, so we'll see. On a scale between 1-10, I'd give myself a 6 for effort this week. There is definetly room for improvement and so my goal this next week is 5lbs gone! Wish me luck!

Who'd have thought.... sweet potatoes and turkey??? HE LOVES THEM!! I've never seen Owen eat so much baby food or make such a mess!! YEAH OWEN!! Missy, our feeding therapist from PCH gave us this little contraption... it's genius!! We mix his baby food in a tiny bit of water and put it in this sippy cup. The best part is... I can control what amount he gets in his mouth. So he puts his lips around the tip of the sippy cup and since he doesn't really know how to suck, I can just push up from the bottom and a little bit of turkey water... (Sounds delicious)... squirts into his mouth. This will teach him that when you suck from the sippy cup, something comes out! I think it's a great idea! When he figures this out, there is also a spoon attatchment that goes on the end. If you have a little one learning to eat, or drink, from a sippy cup... you can get it at Walmart...we love it!
Last, but not least... today is another one of our lazy Sundays at home. Daddy and Owen are laying in bed watching football and Kamryn is on the couch eating a bowl of ice cream...(such a GIRL)! I of course, am blogging....Life is good!!

Still no word on Owen's Cath date, so we are just enjoying our Fall... it is cooling down a tiny bit, but remains in the high 90's. Can't wait until it REALLY feels like Fall!

Our Lil' Artist

Kamryn has always had a LOVE of art! She can take a blank canvas and create the most incredible things. I am so fascinated by her creativity and passion for art. She enjoys crafts, sewing, drawing, painting, chalking... anything!!

I am absolutely NOT creative, my house is plain and undecorated because I have no vision of what I like or want. I took one art class in 7th grade and failed miserably. The only way I graduated from High School with Art credits is because I could dance my little tail off. Anyway.. Kamryn has been BEGGING to take art classes, so a few weeks back she started. Here are the first few pieces she has come home with. These were all done in less than 30 min. I'm AMAZED!

This is an old treehouse and it pops out of the picture... it's hard to tell from the photo.

This is her stained glass piece.

This is half moon - half sun
Every Tuesday is going to be ART day and I'll post a new piece by Kamryn.

Another Cath...

BUMMER!!! Owen had his cardiology appt with Dr. Stock today and was the most amazing baby for the 3hours we were there. He just LOVES everyone in that office and veges out for the hour long echo. His echo looks the same... not so hot heart function, leaky tricupsid valve, lots of collaterals (little spider-like veins that branch off), narrowing of the aortic arch and the pulmonary artery.... Dr. Stock described it as blood just sloshing around in there. Not such a pleasant diagnosis. So, we are scheduling a cath ASAP (hopefully next week) so that Dr. Lamers can go in and coil off the collaterals, balloon open the arteries, get a little fresh blood (transfusion) and he'll be fine tuned for winter! :)

It's always such a bummer to get news that he's not doing so great cardiac-wise because he LOOKS so healthy! He acts like any other 8 month old. He's ALWAYS happy and smiling. His sats are in the mid-high 80's. From the outside, he seems like he's doing great! I don't always understand the whys and hows, but I try to just look at the positives and enjoy every second!

Meanwhile...we remain on the following meds (for all you medical bloggers out there!)

Captopril 9ml/day
Sildenafil (Viagra baby!) 3.6ml/day
Aldactone .8ml/day
Digoxin .8ml/day
Lasix .8ml/day
Asprin 1/day
Prevacid 2ml/day

We aren't coming down... we are going UP on meds... PLEASE PRAY THIS CATH HELPS!!!