Thursday, December 30, 2010

'Twas the Night Before Christmas...(and surgery update!)

I'm not even going to say that I'm behind in updates again (oops!  Did I just type it??)  Thank you for the prayers for our Iowa City consultation and I'm sorry that I haven't posted sooner.  To be honest, we've been letting it settle in a little bit.  Not to mention, I want to update on our special Christmas and I've been thinking I was going to get that done earlier in the week.  So this will have to be a "double update!"

I'm going to start with our Christmas, because that is what I'd like to focus this update on.  We had one of the best Christmases I can remember.  On the 23rd, we went to my mom's as she hosted Christmas with my dad's side of the family.
My niece, Mary, is holding Andrew.  She is his Godmother.  Mary and I grew up together and were always like sisters, since neither of us ever had one!  Mary lives in New York and doesn't make it back to Iowa very often, so we were very excited to spend a little time with her over the holiday.  On the ends are my nephew, Lindy and his wife Jenny, who are expecting a baby girl in March.  We are all so excited for them and it was great to see them!
Can you tell Andrew is pretty happy getting to see Mary!?  Ha!
He is a very loved little boy!
He liked sitting up at the "bar" and sneaking treats!
Andrew got to open one present from Ga Ga and Papa before we went to bed.  He was so excited!  He wanted to open them all!
One of his favorite things...
Can you see a little preview in the box??
Bullseye!  Woody's horse!  And the funny part was, right away he said he wanted "Jessie" to go with it (he has Woody at home).  And little did he know Ga Ga already had the "Jessie" taken care of!  Ha!
And visions of sugar plums danced in their heads... (Ha!)
On Christmas Eve morning we woke up and Andrew dove into the presents from Ga Ga and Papa.  He got a Toy Story robe, which looked so cute on him but he wasn't too fond of it!
He got to open his new stocking from Ga Ga- he was so happy!
In his stocking he got another "Ralphie" ornament for his special Christmas tree!  He loved it!
But this one took the cake!  He had been asking and begging us for the "Woody and Buzz train" from the movie Toy Story 3.  He loves this part of the movie, and he is obsessed with trains right now.
Look at that excited face!  Daddy can't get it out of the box soon enough!  I think this year was daddy's busiest year for putting things together!
Classic look!  He was so excited when he saw what was inside!
He was in a "cheesy" mood and wanted to sit by his train and pose!  I remember back to a time when I was wishing he would do that!  Ha!
So after that he wanted to pose by this other favorite train!
But soon he was back to play with his new train.  He absolutely flipped out when the train fell off the bridge.  This entertained him for most of the morning.  He did it again and again!
It just doesn't get any better than this!
He would jump up and down and laugh and just go crazy every single time this happened!

After spending the day at Ga Ga's, we all drove to our house to spend Christmas Eve together and wake up to Santa!  It was so fun watching Andrew sprinkle his reindeer dust!
He was so fascinated by the fact that the reindeer were going to come.  He kept looking for them in the sky.
Every time he would take a handful and sprinkle some, he'd look up like this to see if it was working!  Ha!  The innocence of a child is just the best, isn't it?
Making sure to get every last bit out of the bag!
After all that fun, we came inside and opened presents from each other.  Andrew got Lotso, which he had been wanting forever.  Except he wanted the $50 one at Target!  I scored on this one for $7 bucks and he never knew the difference (or at least he didn't care!) Ha!
He had also been asking for the "Lotso" garbage truck (from Toy Story 3).  He was very excited, and he took it to bed with him!  Ha!
This was my special gift from my buddy.  He made it for me at school and I just could cry it was so sweet.  It is a flour sack towel with his little hand prints made into a tree.  Precious!  They do such creative things at his school.  He had it all wrapped up for me with a card.
He also got his first "action links" set from Toy Story 3.  He loved this!  It is a reenactment of the train part again- he keeps saying "just like in the movie!" every time he plays with it.
After presents we set out cookies and milk for Santa.
He really wanted to eat one, but I convinced him to leave them for Santa!

After Andrew went to bed, us adults opened gifts.  I got the best gift from my mom!
Um, yeah.  I was slightly excited about this one!  Now I just need about another week off school to sit at the computer and figure out all the awesome things I can now do with my photos!  I can't wait!  I'm going to blog about Christmas Day in my next update...

Now, onto the surgery consultation.  Here are the basics.  Andrew was born with extremely small pulmonary arteries (PA's).  After his full repair surgery at 7 months, they were "supposed" to grow due to the increased blood flow from improving his heart defect.  Two months later, we learned they had not grown, and the pressure in his right ventricle was dangerously high.  At 9 mos old, the doctors performed a cath to try to balloon his arteries and it failed, so they were forced to place stents in both PA's.  Later, a third stent was placed to help bring the pressure down more.  He has had countless caths since then (I seriously lost count!) to widen the stents.  The stents have brought the pressure down considerably, but it is still higher than it should be.  The surgery we are approaching is happening because the current stents are now as wide as they can get and doctors can't balloon them anymore.  They are hindering the growth of his PA's.  

So, the surgeon explained to us that he is going to cut through the stents and widen them with a patch.  The problem area is beyond the stents (closer to the lungs), where the PA's don't seem to want to grow.  Right now, he informed us that the PA's beyond the stents are the same size as the stents, and they are supposed to be wider.  He cannot perform surgery beyond the area closest to the heart, so we just have to  hope that by opening up that area, the PA's beyond it will grow.  His pattern has been that they don't grow, so I am very nervous about this part.

He informed us that this operation might not work.  (Gasp!)  He can do his part to widen the PA's at a particular point, but he can't go close to the lungs and he can't control if they will grow beyond that or not.  Somehow, this was news to me.  Where it makes sense now after his explanation, I was under the impression that he was a miracle worker and this was going to be the permanent "fix" that Andrew needed.

Not so much.

We were also told that he will more than likely need more stents in the future (what!?).  This was also news to me.  At this point I was trying to hold myself up from falling into a puddle on the floor at his feet.  He is going to try to patch the area open, but again, the pattern is that they will not stay open and will need stents to keep them widened.  The good news?  They can put stents in that can be widened over time into adulthood (so this could very likely be his last open heart surgery!).  The stents would be placed in the cath lab after the surgery if the patch doesn't stay open.

Confused yet?  Me too.

So basically I went into the appointment thinking this surgery was going to fix everything.  And it might.  But I also need to be prepared for the fact that it might not.  And that absolutely none of it is in my control.  We are doing what we can by turning our precious son over to the doctors and surgeons, and trusting God to guide their hands.  And after that, all we can do is pray.  Pray that God will perform yet another miracle again and that the surgery will be a success, lowering the pressure in his right ventricle.  

And what if it doesn't work?

Well, I'm not going to go there.  The bottom line is he needs this to work.  Over time, high pressure on his right ventricle will cause his heart to fail.  How much time?  We have no way of knowing.  He's lived his whole life with it thus far.  Now we are just giving him the opportunity for the growth he needs. 

Will you all join us in praying for a miracle?  Praying that the surgery will succeed in lowering the pressure in his little heart?  We have seen God perform miracles, and we have witnessed them right before our eyes.  Every day spent with Andrew is a gift, and we know that.  We just simply want our son to grow and thrive with a heart that is working well.  We want to think about his future, encourage him to reach for his dreams, and watch him grow into a young man.  Fall in love.  Get married.  Live a long, happy life.  Isn't that what we all want for our kids?  Andrew deserves the same chance.

So, we will do what we can.  Send him to surgery.  Pray.  Then pray some more.  But God is ultimately in control, and we will trust in His plan for Andrew.

The surgery date is February 22.  He will have a cath on Feb. 10th to measure everything and help give the surgeon a road map of what's inside his heart.  

Thank you for your support and prayers!  We need them now more than ever!  

Be of good courage, and he shall strengthen your heart, all ye that hope in the LORD.
--Psalm 31:24

Sunday, December 26, 2010

Christmas Celebrations

I am once again behind in my updates, but we've been having such a wonderful holiday season so I'll try to catch up this week- my one week off!  I hope everyone had a great Christmas.  We had one of the best Christmas Days I can remember.  But let me back up...

A couple of weeks ago we went to Craig's parents to celebrate an early Christmas.  We had a great time and Andrew just got warmed up for what fun Christmas is!  He loves being with his family, which just warms my heart.
There was a huge blizzard that came through, luckily it hit once everyone got there safely.  We headed out to see the first real snow of the season.  We were farther north so they had much more snow than we did! 
We took advantage and got the kids outside to make their first snowman!  Andrew just had a blast!
He really wanted to try to pull Jayden in the sled!  He did a pretty good job, considering Jayden is a year younger but weighs more than Andrew does!  Ha!
He was fascinated with the snowman!
Daddy's gloves are a little distracting here (ha!) but Andrew loved putting the face on the snowman.
I think it turned out pretty cute!
Uncle Jay pulled all three kids on the sled!  They just had the best time enjoying the snow!
I do realize Andrew will probably kill me someday for posting these pictures of him, but I can't resist because they are too darn funny.  He is obsessed with his boots and didn't want to take them off.  So when we stripped him down to dry off, before I could get an outfit on him he put the boots back on and entertained everybody!
Evie, do ya like my boots!?  (Ha!)
The "kid" table!
The kids all dressed in their Christmas outfits pose for a picture before opening gifts.  This was about as good of a picture as I could get with 6 kids under the age of 5!  We bribed them with their presents though, so they did pretty good!
The attempt at a photo with their grandparents didn't go over as well, they were getting impatient and ready to open those gifts!
Andrew got some really great gifts.  Scooby Doo figures and the Mystery Machine from cousin Jack was a huge hit!
He is so cute when he opens something, he studies it so closely.  He always tries to get every little piece of paper off the box, then he takes the present and checks out the front, the back, etc.  Then he'll hold it out to daddy and say "Open it" or "take it out!"
 We could hardly get him to stop pushing this around to open more presents!
Toy Story memory game!

We had a great time at the Huegel Christmas.  The next day we all headed out together and followed each other as far as we could because the weather was so bad.  The roads were awful but everyone made it home safely!  Hey, we wished for snow, and we got it!
Later that week, Andrew had his Christmas program at school (his day care).  Every year they practice songs and perform for the families.  It is so cute- and all the seats fill up fast!  You have to get there super early just to get a good seat!
Andrew was so funny.  He literally stood there like this during all three songs they sang.  He was so tired because he never naps anymore, and by 6 or 7 at night he is exhausted!  I cannot get him to nap to save my life, so evening events are pretty frustrating sometimes!
He was very serious.  Doesn't he look exhausted!?  Ha!  Cute though!
It just cracked me up, his teacher told me he knew every single word and action, and you can see how well he performed!  Ha!

Funniest part of the night:  During the last song, he decided to do this one last move!  It was just hilarious.  Everyone cracked up because he just stood there and did nothing the whole time until the very end!
Posing with Lilly after the program.   Lilly did so good, she is in the class above him and she sang every word perfectly!  Maybe she'll have to teach Andrew next year!  Ha!
Andrew just loves Lilly.  She always comes in his room to see him during the day.

Craig videotaped the program but couldn't figure out how to run the camera until the last song, thank goodness he got the funny little move Andrew did on film!  The other funny thing was a couple of nights later, Andrew was playing and I was in the kitchen doing dishes and Craig was busy on his laptop when all of a sudden, Andrew stands up on his firetruck in his footie pajamas and Woody boots and decides to belt out the songs from his program!  I grabbed the video camera as fast as I could and caught him singing!  It was so cute!  The video is a little dark, but it's worth the watch-just turn the sound up (pause the music on the blog at the bottom)...

We head to Iowa City tomorrow (Monday) for our consultation with Andrew's surgeon.  Thanks for all your comments on my last post.  It means so much to know we have such an awesome support system!  We'll update again when we know more, and our Christmas Day update will be coming soon!

Merry Christmas!

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