Poor Cheeky

I took off Owens Oxygen tonight to see how he does and look at his poor cheek! Pray that we don't have to put it back on. His O2 sats were in the mid 80's with 1/8 liter.

Why Owen NEEDS Feeding Therapy

Owen doesn't take much food .. by much I mean any... by mouth. We continue to try different bottles, nipples, flows, textures, baby cereal and juice....ANYTHING that will get him interested in eating. We have been taught to make eating a pleasurable experience and so that's just what we try to do. The speech therapist is coming out next week to do her initial evaluation and to get started working with Owen so he can actually get some nutrition the normal way. Her first suggestion was to buy this space saver high chair because it's smaller for him .. happened to be $20 off at Target this week...and we LOVE it!!!

She also suggested that we try putting his rice cereal baby food on the tray and just let him PLAY in it and smash it around in hopes that he'll bring his messy hands up to his lips and taste it. Apparently he doesn't like to be messy and sticky and wouldn't touch the cereal. We'll keep trying this! Kamryn LOVES to try to feed him and is very patient with him. Here she is tyring to give him a taste of cereal on his lips... he was having NOTHING to do with it.
Ooooo... sissy snuck some into his mouth! I'm not positive, but by the looks of this face... he's not LOVING it, but he's not grimacing at us either. After this SINGLE taste... he seals his lips shut!
Better luck next time Sissy... you are the best big sister ever!! Thank goodness for the NG tube... at least he gets enough nutrition to chunk up.
After 10 minutes of TRYING to eat some baby cereal, and attempting to drink from the bottle... we wore poor Owen out. NAP TIME!

5 Month Comparison

It's official....my kids look NOTHING alike! This is a picture of Kamryn when she was 5 months. Of course this was 8 years ago and we didn't even have digital cameras yet. I didn't realize she was eating food so early...but there she is knawing away on a cold cucumber! They both have beautiful baby blues, blond locks, and appear to both be long and lean. But....the similarities kinda stop there.Here is Owen at 5 months!! We had a cardiology appt today and he's up to 13lb 6oz --25"-- he's on the growth chart and steadily climbing. Owen's 5 month facts...

Accomplishments

*Smiles at everything
*Prefers people to toys
*Hates tummy time but can now lift up his head
*Grasps toys
*Chews on his fingers
*Chuckles...but only a couple times
*Sleeps 12 hours through the night as long as he has his binki and Snort
*LOVES his Snort (red bull beanie baby)

Challenges

*Won't take a bottle ...chews on the nipple and plays with it
*Tastes bites of rice cereal IF we put it on his gums and he only allows a few tastes
*Weaning the doses on some of his bazillion meds....

--Captopril (heart med)
--Digoxin (heart med that helps squeeze)
--Sildenafil (otherwise known as viagra ... pulmonary hypertension med)
--Aldactone (supposed to help heart function)
--Lasix (diuretic)
--Diuril (diuretic)
--Prevacid (heartburn)
--Asprin (blood thinner)

*Weaning off the O2 this week
*Physical & Speech Therapy once a week

When I look back on the past 5 months I can't help but be amazed at all of Owen's accomplishments!! He has overcome a lot -- 2 open heart surgeries, 2 cardiac caths, 70 days total in ICU -- and he is still keeping up with all the other munchkins his age. We are really starting to push the feeding issue at this point...if anyone has any advice...I'm ALL ears! HAPPY 5 MONTHS BUDDY!!

O2 and NG FREE...

Ok...so not permanetly, but for an hour at least! Owen needed to have his tubing changed today so I figured I would give his poor little face a break. Here are the many faces of Owen within a one minute time frame. He's such a little ham!!





I say these were taken within a minute because this is what we got after 60 seconds... "LEAVE ME ALONE!!"

A Birthday Splash

Make a Smilebox scrapbook

Lazy Days of Summer

Our summer has been filled with lazy days of kickin around the house in our pj's all day! Since it's WAY too hot outside (110-114degrees) for Mr. Owen and his many medical "accessories"don't make it easy to go anywhere. This encourages us to become creative since we're stuck indoors for the majority of the day. I am enjoying my days at home with the kids until I have to force myself out the door to work until midnight. I am not complaining as I ENJOY this time at home, being Lazy and taking a much needed break from all the hustle and bustle of our lives.

Kamryn and Owen snuggling in my bed. Owen is thinking "Stop taking pictures of me and PICK ME UP before sissy kisses my cheeks off!"

Hope you're enjoying your summer!!!

Happy 9 years!!

Happy Anniversary honey... I can't believe it's been 9 years! Thank you for being my best friend for these past years. I'm not going to say it's been easy. I'm not going to say it's been perfect. I'm not going to say we haven't had our ups and our downs. I am going to say I LOVE YOU and I can't imagine my world without you in it!

Carson and Andrea

June 18, 1999

A HOT HOT Father's Day!

It was a scorching 110 degrees outside today. Justin and Larissa (Carson's sis & bro-in-law) bought this JUMBO waterslide for the kids and invited us over for a yummy mexican feast. The cousins had a BLAST playing in the water while Mr. Owen chilled inside with the adults. It was a fabulous way to beat the heat and spend time with family!




There are no pics of Carson and the kids today because daddy is SICK! He can't hold Owen or play with Kamryn until his antibiotics kick in. I want to wish all our Daddy's a HAPPY FATHER'S DAY!!!

We're HOME!!

This is a record for us... Owen was discharged after only 30 hours... WOO HOO! He is grumpy and uncomfortable, but I can deal with that! As we were taking off all the bandages and tape today we counted FIFTEEN IV pokes from the cath lab.. thank goodness he was zonked out for those...poor buddy looks like a pin cushion!

As soon as we got home Owen got a shower, clean clothes, a "girly" blanket and zonked out with Mr. Snorty (the red bull). Hopefully he'll stay this way for a few hours :).


This is Owen a few hours post op... After the first picture he rolled over and put his arm over his fac... I think that means he's DONE! Owen got a discharge ECHO this morning which looked like a pretty big improvement!! Oh... how I love to hear good news!
Ok... we are done with the hospital for at least 18 months now... right Mr. Owen??

Successful Cath!!

Owen came out of his cath at around 12pm and did fantastic!! Dr. Lamers (cath cardiologist) showed me pics of the cath and showed me where the narrowing of the aorta and glenn repair were. He showed me pictures of his ballooning of these arteries and then showed me the outcome... AMAZING! This should relieve a lot of pressure off of Owen's little heart and in turn... GREATLY improve his Function!! I can't begin to tell you how good this feels and we are going to just pray that this does the trick.

Owen is feeling good... lots of happy meds (morphine, versed) all making him feel loopy. He has to lay flat for six hours and not move his legs... not an easy feat for a 4 mo old. They had to do a groin IV (can't feel good) and they did the cath through both legs at his groin... they also had an entrance point at his neck....OUCH! Other than that, Owen was a little puffy but the lasix IV got rid of the extra fluid within an hour. He didn't have any pulses in his right foot for about 4 hours...THANKFULLY...they came back. I haven't asked about discharge because it jinxs us, but we're hoping to be home tomorrow.

Thanks for all the prayers and love!! Mr. Owen has proven to be a little trooper as always.

Dr. Stock Update

Owen is still in his cath. They found narrowing in his aorta and also in the glenn repair (his last surgery)... this is all just narrowing due to surgery scaring. They will do an angioplasty (which is to insert a tiny balloon into those arteries to stretch them out). Not only will this help with his blood pressures, but also his function should improve and most likely Goodbye oxygen!

It should be a "LONG TIME" as I was told... so I am patiently waiting while reading my gossip magazines and sodoku puzzles. I'm sure there are more updates to come...Mr. Owen always finds ways to surprise us... PRAY that it's only GOOD surprises! :)

Cath in Progress

We arrived at PCH at 5:30 this morning after filling up my $75 tank of gas... OUCH! At 8am, they took Owen back for his cath. The cardiologist said that they won't know what they are doing until they get in there. He reviewed all of Owen's previous Echos and thinks that Owen's function is better now than he has seen it since he was a pee wee. His function is still not fabulous... but this is great news!! I will update more when I get info.

ANOTHER Cardiac Cath

Owen went to a cardiology followup appointment today... after 2.5 hours, I knew something was up. We did the vitals, EKG, blood pressure, pulses, and then the echo. After the echo we go back to the room and waited for Dr. Stock to review it all. You know it's not good news if Dr. Stock comes in to get Mr. Owen for ANOTHER echo. Dr. Stock doesn't like the look of his blood flow and pressures in the aortic arch. Here is a picture of Owen's heart for those of you that don't know.... we're talking about the purple arch.
Anyway... it took the cardiologists a while to find the culprit as to why he has so much pressure in his aorta. It looks like he has a narrowed section of the arch. We went back and looked at previous echos and this was not an issue...such a mystery. After this discovery, Dr. Stock took an extra close look at Owen's pulses and blood pressures to check for weakness. This would be a "sign" to do a cardiac cath asap... and what do you know... we have a cath schedule for 5:30 am THIS Thursday at PCH. I still am unsure as to what they're going to do in the cath, what they are looking for or if they are going to do some ballooning??? I'll find out at the crack of dawn on Thursday.

Sweet Mr. Owen was smiling and happy for the WHOLE visit! I feel so bad that he has to go through more anethesia, pain and pokes in such a short amount of time. Please pray for a good outcome and speedy recovery!

A "normal" cardiac cath should be a 24hr PICU recovery time... but Owen is FAR from "normal". We know he's a tough guy and will do his best to come home soon! :)

Mr. Show Off!

Owen decided to REALLY show off his new teeth!! Not sure what he is doing in this first picture...but it cracked us up!!



What a silly boy!!!

K-A-M-R-Y-N

Kamryn is the sweetest daughter ever!! I thought I would do an entry JUST for her!!

Name: Kamryn Nicole

Bday: Jan 03... Can't believe she's already 8!

Names she responds to: Booboo, Bobo, Kami, Boobolish

Kamryn's Favorite Things:

--Webkins (she has a bazillion), Nintendo DS, everything Pokemon, she LOVES anything video game related as she gets this from her daddy!

--Kamryn enjoys reading, although she only does it if she's forced.

--She has a talent for art and anything creative.

--Kamryn enjoys music and keeps asking to take keyboarding lessons.

--She enjoys cooking, baking, sewing and doing crafts.

--Kamryn has 10 cousins, lots of friends and still prefers to chill at home with our family (we're going to enjoy this while it lasts).

--Kamryn likes dance and is a fish in the water.

--Kamryn has never been sick and has never needed an antibiotic. She's only had one minor surgery to have her tear ducts unclogged when she was 4.

--Kamryn is always kind, never complains when asked to help out, and loves everyone around her!

Most of all.... she is the best big sister that Owen could ever ask for!

And we are so happy that she is our daughter!!

Movie Review

FIVE STARS for Kung Fu Panda!! Carson, Kamryn and I went to see KUNG FU PANDA today and LOVED it!! Thanks to Auntie Janesa for watching Mr. Owen so we could spend some time alone with Kamryn. If you're looking to cool off from the hot summer days... this is a great one for the entire fam!

Two Tiny Teethers

Owen's two bottom teeth made their appearance this week!! Getting a picture of these adorable little chompers has proved to be a challenge!!

Owen likes to stick out his tongue when he smiles which is as cute as can be... but it hides those pearly whites that I so badly want to show off.

We started in the bumbo on the table... "Owen, not the tongue buddy... your teefys!"

Ok... the tongue is cute. Here's the tongue again!
If you look REALLY close you can see his pearly whites in this picture. Once again.. SORRY for the blurry photos... he moves all over the place with excitement when he smiles..and I am not the best photographer! And this face means he's done!!
I WILL get these teeth on camera....SOMEDAY!

Rough Night

Owen scared us silly last night! At around 2am he woke up for his routine diaper change...but this time he woudn't calm down. He spit up, then pooped, then spit up,, then pooped...while screaming the entire hour.....poor guy! I got scared after an hour and had Kamryn turn on the bathroom light....Owen was puffy and the worst I 've seen him. Carson had me rush to get the oximeter on him... WHY DIDN'T I THINK OF THAT???? His O2 was in the 60's.... NOT GOOD! Daddy calmed Owen down while I called the cardiologist on call and increased his Oxygen to a liter. Only Daddy's magic touch could do the trick and his sats increased to the high 70's...not great, but I'll take it. The cardiologist just advised to keep an eye on him and if he gets worse to take him back to the hospital.


As he slept, his sats came back up...SLOWLY to the mid 80's...this is where they should be! We already had a pediatrician appointment scheduled for early this morning which was perfect timing. Owen's weight is unimpressive at 12lbs which puts him in a pee wee category at 3% of average. We'll cotinue to work on that! Everything else was the same...he still looks exhausted and puffy and we just need to be extra cautious the next few days to make sure he doesn't get any worse. I feel aweful that I should have done something better or different at 2am.....I'm so sorry baby boy!!


Needless to say....Owen has spent the majority of the day like this.....

Rest up Owen!!!

First Swim of the Season

HAPPY JUNE everyone!!! We took our first swim this weekend... and I will say "we" means Kamryn. Owen dipped his feet in and I tried to get in but the water is FREEZING!! Call me nuts, but I thought with the 100 degree temps we've been having that the water would be something above icy. I really should get in an enjoy it because in a few more weeks it's going to be like jumping into a warm bath... you Arizonan's know what I'm talking about!

Here's to many more days spent lounging by the pool!!!