10 days to surgery!

We are finally getting settled back in after returning home on Thursday evening.  Andrew was pretty much back to his old self by that evening.  I want to thank everyone again for all of the support and encouraging words during Andrew's cath and also my fetal echo.  It is so nice to have those things over with now so my mind can entirely focus on Andrew's surgery.  As I was home and Andrew was recovering on Friday, I finally started to dig out my pile of surgery information that had been mailed a while back, and I started a "surgery pile" with things we need to pack.  The list is getting overwhelming and I am just praying we won't forget anything and I'll think of everything we need!  I'd love some advice from other heart moms- leave me a comment if you found something that really worked with your child's surgery, etc.  I'd love to hear suggestions for making Andrew's time in the hospital as comfortable as possible for him.

On Wednesday when we headed to Iowa City for his pre cath appointment and my echo, we stopped at the mall for lunch and Andrew found this!  A Stuart Little car!  He was so thrilled I couldn't get him out of it.

He just loves those movies right now.  

Here is Andrew sitting up in bed after his cath.  His cheeks were so red and he looked so puffy- he was pretty full of fluid.  The first thing he wanted was his monkey jammies on!  Ha!  As you can see, he's doing a great job of keeping his leg straight!  Ha!  Those directions pretty much went out the window.  It is next to impossible to keep a four year old's leg straight for 6 hours.  We were just lucky he stayed in bed that long!

He was thrilled with his delicious hospital cafeteria pancake.  Ha!  When I read him the list of foods this was what he wanted.  

We snuck a little car ride in before the 6 hours was up... oops!  Our nurse saw us in the hall and told us he can't be out of bed yet!  We are naughty I guess.  But seriously, I get that it is for his safety but come on!  Without sedation, Andrew is not a fan of being bedridden!  Plus we said his leg was probably straighter in this thing than lying on the bed with his legs crossed!

Craig (our comic relief) added some things to the board in Andrew's room.  Ha!  We cracked up.  I asked him if he erased it before we left and he said no!  I'm sure the next people in the room got a kick out of it.  

That night when we got home, Papa came over to pick up Ga Ga and we all had pizza together.

Andrew was so happy to see Papa.  Can you believe this was just 12 hours after his cath??  He bounced back so fast, thank goodness!

He wanted Papa to play trains with him- this went on for the majority of the evening!  Andrew was very happy to be home.

Andrew got a new Toy Story blanket to take to the hospital with him.  He's planning his escape from his bedroom into mommy and daddy's bed!  Ha!

Also a Toy Story pillow to match... you can press a button and it tells you the story- pretty cool! (Thanks "Aunt" Alissa and Lilly!)

He's already practicing.

He was watching E.T. and kept getting handfuls of his stuffed animals and dragging them downstairs to set them up like E.T.!

I've had a little preview of what our 6 weeks of recovery time at home is going to be like!  Ha!  Andrew is one active and BUSY little man!  I'm sure we'll both be going stir crazy and begging to go back to work and school!  I know Andrew is going to miss school and his little friends so much.  He already misses them and he's been out of school just since Wednesday.

I wanted to let our family and friends know that we would absolutely LOVE to have you come and visit Andrew when he is in Iowa City.  Just being there one day gave us a glimpse of how long and boring the days can be with such a busy boy who loves his friends and is so social.  I remember posting on our care page during his last surgery that we wanted to keep visitors to a minimum.  He was a baby then, and I was very concerned about him getting sick.  This time around is totally different.  I would also love the company!  If anyone would like to come to support our family, we welcome it.  Please keep in mind that you have to be healthy, but if you are, we'd love to see you!

We realize that Iowa City is a lot farther away for most people than Des Moines would be.  That is one downfall for having the surgery there.  But we feel the benefit to Andrew outweighs the distance.  While entering the hospital on Wednesday there was a huge banner hanging outside that read: "One of the Best Children's Hospitals 2010."  Craig and I decided right then and there we wouldn't want  Andrew to be having open heart surgery anywhere but a hospital with a banner like that!  Ha!  Anyway, we often do feel like we are a million miles away from civilization when we are cooped up in the hospital day after day.  That is why your emails and messages mean so much to us.  And why we wanted to let you know that your company would certainly be welcomed as well.  Give one of us a call (Craig, my mom and I will be there all week) and we'll let you know where we're at! (Sometimes our cell phones don't get good reception in the hospital rooms, so just leave a message and we'll get back to you).  Once again, the date of his surgery is February 22 (Tues).  Probably anytime after Wednesday, or over the weekend would be a perfect time to visit.  Thank you in advance for all of your support!

Doing Better...

Sorry for not updating earlier- we've been a little busy trying to occupy one irritated four year old!  Andrew came out of the cath lab very angry and upset.  It took over an hour to calm him down.  He was pretty mad that his arm was strapped to a board and wrapped tightly to cover his IV, not to mention they were holding him down to keep his leg straight.  Basically he wants out of bed, and wants to go home right now (actually he wanted to go home the second he woke up!)  The cath went very smoothly and he was out of there by 9:30.

Dr. Divekar says if he didn't have the stents hindering the growth of his pulmonary arteries, Andrew would not even need to have this surgery; however, he says he is totally out of options at this point, and he needs Dr. Davis to provide him with more options as to what he can do to help Andrew's situation.  He is 100% confident that this surgery will benefit Andrew (which is different information than the surgeon gave us- he had me very concerned!) but Dr. Divekar is very confident and was very happy with how well Andrew is doing compared to when he first saw him 3 years ago.  It sounds likely that Andrew will need more stents once this surgery is over, but he was still confident that it would help him tremendously.

Right now the blood flow into Andrew's lungs is 90/10 - which means only 10 percent goes into one lung.  Back when he had his lung profusion scan, there was at least 30% going to one lung, so that situation has gotten worse.  My mom asked him how it is possible that Andrew can have so much energy and be so active with only 10 percent of his blood giving his lung oxygen, and Dr. D replied very simply, "well, you can live with only one lung!"  Ha!  We just love him and how positive he is.  He instantly made me feel better and calmer going into this surgery.

My little man has about another hour before he can move (can you believe he's been in bed ALL DAY!???)  He's been fascinated by peeing in a tupperware jar and sitting up to eat a pancake in bed.  He just gobbled his lunch and has been very thirsty and hungry, which is a good sign.  The child life people (God bless them!) came and brought him some new trains to play with and that made him very happy.  He's watching E.T. and getting a kick out of the fact that his finger lights up like E.T.  (with the pulse ox on).

I can't thank everyone enough for all the support, prayers, emails and messages sent our way.  It means more to us than you can possibly know.

The long awaited news...

We are very happy to announce that our precious baby is HEART HEALTHY!!!!!!!  We are so relieved and grateful to our God, who gave us this precious child that was so wanted, and is so loved.  We felt the prayers being sent up for us today.  I felt a peace come over me when I finally got on the table!  The build up was so nerve wracking for me.  Between the drive there and sitting in the waiting room, I had quite a few knots in my stomach!  Dr. Ben told us right away he saw four chambers, and he found the pulmonary artery and showed us the appropriate amount of blood flowing through it.  He saw no holes in any of the chambers, and I just felt like the weight that had been on my chest for so long was being lifted as I lay there.  I have to say that it felt very surreal to hear that our baby's heart was "normal," because we have never heard those words before.  It was very new to us, and it was one of the best feelings in the world.

I must admit I had to blur out my belly here because trust me, it isn't something anyone wants to see!  Ha!  But of course I wanted to document this special moment.  Andrew was thrilled to see "his baby" swimming around inside mommy.  I don't think he could believe what he was seeing!

He was very tender towards me and was giving the baby some love!  He sat on daddy's lap most of the time and just stared.  Baby was in the wrong position to determine the gender (little stinker!) but Andrew is now convinced he wants a "brudder!"  Every time we ask him now that is the answer we get.  I guess we'll have to wait longer to find out!  Our big 20 week ultrasound is coming up in early March so hopefully baby will let us find out then!

Andrew and daddy were filmed today when Andrew got his labs drawn.  They are making a commerical for the hospital for first time parents on what to expect before a cath.  I suppose they asked us to do it since we are "cath pros!"  Ha!  I seriously have lost count as to how many times he's been in the cath lab.  I was nervous about the filming because normally Andrew freaks out and screams when she approaches him with the needle.  It was almost like he knew he was on camera today, and he was very serious and acted perfectly.  He sat on daddy's lap and the child life specialist distracted him with a book and toys and he didn't even notice the needle going in!  I was completely amazed.  Our little boy is growing up and is no longer a baby. :(  He was such a big boy- we were so proud of him!

We've been having so much fun since we found out our great news!  Ga Ga and Papa met us afterwards and we went out for dinner together and checked into our hotel.  Andrew hardly ate he was so excited to go swimming!

He practically jumped in the pool, not caring if we were with him or not!  He used his Buzz kickboard and just kicked those legs like a pro!

The 100 ft. waterslide was his favorite part.  He wanted to go again and again and again (and he did!)

Andrew has the best daddy there is, because Craig just kept going with him over and over and acting like it was the most fun thing he could be doing.  He said he is totally sore and super tired tonight!  Ha!  He got a workout!

Since Andrew can't eat after midnight, and he didn't eat much dinner, Ga Ga spoiled him and went next door to IHOP to get him a smiley face pancake.  He was thrilled!  He loves the yogurt and bananas that come with it too.  He just gobbled it!  We've been trying to get as much food in him as possible because we know he'll be hungry in the morning!

What an amazing day- we are praising God for the wonderful news, we are still in awe.  Please keep the prayers coming for Andrew's cath in the morning.  Thank you for the wonderful support, emails, and messages here and on facebook.  We love you all!

Brave

Lots of things have been making me think of hearts lately...  besides the fact that both of my babies are getting their hearts checked today, and that it is heart month and CHD Awareness week, and Valentine's Day is coming up.  Whew!  That's a lot of HEARTS all at one time.  Bear with me through these analogies as I journal to work through all the thoughts swimming around in my head...

Andrew's latest movie obsession... E.T.  I never really thought about it until we watched the movie about 20 times in the past 3 days!  E.T.'s heart glows at different times throughout the movie.  As he is bidding farewell to Elliot, he says "I'll be right here."  In his heart.  How often do we think about what's actually in our hearts?  A lot more than just blood and vessels and ventricles.  I know that Jesus is in Andrew's heart.  Along with his Grandpa Bill.  And they'll both be holding it in their hands while the surgeons expose it in a short 2 weeks, much like E.T.'s.

What's in our hearts?  Another activity I do with my kids every year is a "Map of My Heart."  They divide their "heart" up into pieces that are strategically sized according to how much of their heart each item takes up.

I've always done it as a Valentine's Day activity, but the past few years it has taken on new meaning.  This week when I showed my class an old sample of a map of MY heart from when I first started teaching (12 years ago), I almost giggled.  Many of the things have remained the same- family and friends taking up a huge part of the heart puzzle.  One of my favorite ones from my past was "exercising."  Ha!  If only I had the time and energy to actually make that a part of my heart today!  Lol.  Today if I were to draw a map of my heart, it would look so much different.  It is amazing to think about how much things have changed and priorities change as you become a wife, mother... a HEART mother.  Andrew has changed my heart in more ways than I can count.  And I am so grateful for the lessons he's taught me.  I challenge everyone to make a map of their heart this month.  Do it with your children and your families.  It really makes you think (Note: this is not a homework assignment!  Just something to do for fun.  Ha!)

Things weighing heavily on my heart this week:

This afternoon we make the drive to Iowa City.  Our very first appointment is our fetal echo.  Since the day I found out I was pregnant, I knew this day would eventually come.  There hasn't been a day I haven't thought about the possibility of having another child with a heart defect.  I am pretty sure I couldn't handle going through this again.  I know so many other families that do... double cardiology appointments, sending both of your babies to surgery, monitoring both your children for signs of heart failure... I don't know how they do it.  People often ask us how we do what we do.  But the truth is...it could be so much worse.  And it is for so many.  We are just praying that God won't give us more than we can handle.  We so appreciate the prayers being sent up for us!  I'll try to update between our appointment and Andrew's cath on Thursday, but we will be having a lot of fun going out to dinner and swimming in our hotel (we got the "ok" to take Andrew in the pool and he's going to be thrilled!)

I'd also have to say that Andrew's surgery is now on the forefront of my mind.  I'm not sure I'm ready for this again...

Surgery #1- February 6, 2007 (7 days old)

Surgery #2 (complete repair)- August 17, 2007 (that's the same puppy he's holding.  I think we'll bring it along for this surgery too, so we can see how much bigger he is.  In the first picture the puppy was as big as he was, and it is just a small beanie baby!)

The first question in my mind is...how on Earth do we explain this to Andrew?  How do we prepare him to come out of the OR with a fresh scar running down his chest?  The one he has now is so faded it is hardly noticable anymore.  I'm not sure my eyes are prepared for the sight of it again.  I'll never forget how I felt the first time I saw it.  I wanted so badly to protect him from it.  To remove it from professional photographs.  Just "erase" it like it didn't exist.  As time went on, I slowly began to realize how proud I am of that scar.  It is Andrew's "mark" on the world.

And soon I wanted to flaunt it!  To show the world what a BRAVE little boy he is, and that we are so PROUD of the things he's endured.  It isn't something to hide, but something to be proud of.  And we will always teach Andrew to feel the same way about it.  It doesn't make him "different" from everyone else... it just makes him "special."  And brave.

We've started talking about it to prepare him.  I have lots of books about the hospital that I've collected over the years, and we've been looking at his past surgery pictures together and talking about how the doctor is going to fix his heart again.  It is heart breaking to have to explain this to him, but just like Andrew always does, he chooses to think of the bright side.  The other day he said "Mommy, when I go to the hospital then you and daddy will buy that movie for me?"  Ha!  He is going to be slightly spoiled (like he's not already!  Ha!)  But I seriously want to give him everything he wants, to make up for what he's going to have to go through.  Lately he has been obsessed with the movie Stuart Little (both 1 and 2).  He loves the bird, Margalo, from SL 2. 

 He has been asking for the bird, and he said "Mommy?  I go to hospital first, then you will buy that bird for me, right mommy?"  I told him I didn't know where to get the bird and he suggested Walmart!  Ha!  Later that night I looked it up online and the only toy Margalos I could find were $40 bucks on ebay!  Apparently they are very rare and hard to find.  No kidding!  So I am on a search for a cheaper version... because I want him to have it (and $40 bucks buys about 2 meals of hospital food for us out of a week's worth!).  But Andrew deserves it!  Right now if he asked me to jump off a building for him I'd pretty much do it.  I think it is partly guilt, because we made the choice to bring him into the world this way, knowing he had a heart condition that would cause him to have a lifetime of surgeries.  I hope that someday he can understand why we did it.  And that he has a very special purpose in this life.  He can change the world.

And we believe that someday he will.

I think my fourth grade student summed it up best when she wrote a card for Andrew at school yesterday.  The card said:

FOUR YEARS OLD

BRAVER THAN ME

I think that speaks to all of us.  Andrew is definitely braver than me.  Those words really spoke to my heart when I read them.  I have been thinking of that phrase over and over again tonight.  It is just so amazing to think about...if you really think about it.  A very smart fourth grader realized the incredible amount of bravery it would take to endure open heart surgery...not just once, but three times.

Will you help these brave children fighting CHD every day?  Will you help by raising awareness?  Tell someone about Andrew... about all the CHD  children you know and how brave they are.  So many heart related things are occurring for us this month... our fetal echo, Andrew's cath and surgery... the timing couldn't be more appropriate.  I pray that you will be encouraged to spread awareness this month. That you will follow Andrew's journey and it touches you enough to ask someone else to follow it too.  The more people who know about CHD, the better the future is for our kids.  Please join us on this journey.

<center><a href="http://thehuegelfamily.blogspot.com/" target="_blank"><img alt="A Little Monkey Business" src="http://i53.tinypic.com/18kcav.jpg"/></a></center>

Thank you so much those of you who have posted this brave little face on your blogs already!  Here it is again for those who would like to post it.  I appreciate it so much!

Andrew's name means "Warrior, courageous, valiant."

I couldn't think of a more fitting way to describe him.

These jammies also made me think of Andrew- pirate (we've always related that to his scar) and the heart eye patch.  Quite symbolic, and couldn't be more fitting!

Get ready to fight, Andrew!

Do not be afraid of them; the LORD your God himself will fight for you.”

Deuteronomy 3:22

To help spread more awareness, my husband Craig was interviewed on our friend Stefenie's blog today! Go here to read our story from a dad's perspective!

Toy Story Mania!

Andrew's fourth birthday was such a special one!  His theme was Toy Story, and I had so much fun with the decorations this year!

Andrew already owns a ton of Toy Story toys, so decorating was pretty easy!  I just used his toys and books to put on the tables.

I loved this- I bought this box a long time ago, which was full of pull ups!  I thought it looked like a toy box with Woody, Bullseye and Jessie peeking out!

I took this before I put up the balloons and streamers, but I loved how the mantle turned out.

I made these adorable alien treat sacks.  Craig thinks I have too much time on my hands...HA!  Certainly not the case, I just get passionate about Andrew's parties and I like to do what I can.  I guess you could say I make time (aka staying up until wee hours of the morning!)

The cake was another fun idea- Andy's bed and I had all the characters to put on it.

The cake table... I also loved spelling words out of the baby blocks with letters on them.  Also, his Woody boots are propped up on a cute Toy Story tin, which you can't see very well.  But he just loves his boots.  I was surprised he let me decorate with them instead of wearing them!  Ha!

The kids table

Every year I make signs for the front door and the mantle.  Another one of those things I make time for I guess.  This is supposed to look like an Etch a Sketch... I tried!  Someday I want to hang all the posters from his parties in a really fun playroom.  I have yet to create the "really fun playroom" and need more space in my house... but it's my plan someday!

Ga Ga and Andrew

I had to laugh when I looked in the living room and saw this!  All these kids and toys jam packed in our small room!  Ha!  They didn't seem to care!

This was so cute... Andrew's chair was at the end of the table, and his little friend Landon pulled his chair around to the side so he could sit right next to Andrew!  Ha!  I am so sad I forgot to take a picture of all the delicious food!  We had a brunch this year, which I loved doing more than dinner.  It was so easy and some of my favorite foods!  We had egg casserole, cheesy hashbrowns, monkey bread, fruit and bagel bites from our favorite bagel place in town.  It was all so good!  I could have kept eating that stuff all day long!

This year we had ten kids at the party!  There are getting to be more and more each year because of all the babies!  I love it.  Jack and Brooke (cousins) are on the left, the little boys in the green striped shirts are brothers Landon and Logan- I taught with their daddy, Greg, for about 10 years and our families are good friends, Andrew is in the front looking mad because it is cake time and I am prolonging them for a picture!  Ha!  I could not get the little stinker to say cheese!  My best friend's daughter Lilly is behind Andrew.  The baby in front and her big sister behind her in matching skirts are Stella and Norah.  Their mommy and I grew up in the same town and were even in elementary school together!  Evie and Jayden (cousins) are on the right.  It was so fun to have so many kids there- all Andrew's dearest friends and family.  It was a very special day and we were so happy everyone could make it.

I wanted to do something different this year and asked that instead of a gift for Andrew, guests bring a donation to the playroom at the hospital in Iowa City.  Andrew got so many nice gifts for Christmas (and I am running out of storage places!) Plus, I have always wanted to give back to the hospital in some way, and I thought the year of his surgery would be the best time to do it.  We got a box full of great toys and DVD's to take with us this month to share with the kids in the hospital!  I am so excited.

Don't worry, Andrew wasn't forgotten!  People were nice enough to still bring gifts for him, too!  I was so overwhelmed with how generous our family and friends were.

Daddy got in on some fun and put a bag on his head!  Now that's a good look!  Ha!

After presents it was time to dig into the cake!

I love how he was looking at his cake with this shy smile as people were singing.  He loves it when people sing Happy Birthday to him, but he gets all shy!  It is funny.

More shy faces...

Four candles... I just can't believe it.  How could time have gone so fast?  It seems like just yesterday we had a tiny 3 lb. baby in our arms!

Soon we will have another baby to love (hopefully not 3 lbs though!) and I can't wait to see Andrew with his brother/sister.  Look how happy he was gently tickling baby Stella here.  I love watching him around babies.  He always smiles at them and plays so nicely.

Daddy was having fun relaxing and changing the channel from the 3rd viewing of Toy Story 3!  Ha!

Andrew was quick to take care of that problem!  And get his giraffe hat back! 

Family photo!

Andrew had so much fun with his big cousin, Jack.  He loves it when Jack comes to his house, which isn't very often because they live four hours away in Minnesota.  It is so nice that they make the long drive to celebrate with us.

This is Craig's oldest brother Keith, his wife Darlene, and Jack and Brooke.  They are Andrew's Godparents.  We think the world of this family- and we love to go to MN to visit them!  We try to make it there a couple times a year.  

This is Craig's younger brother Jason, his wife Rachel and their kids Evelyn and Jayden.  We are so blessed that they live right up the street from us and we get to see them often.  Andrew just loves playing with Evi and Jayden any chance he gets.  We trade babysitting with them too, so we can have date nights!  It is so nice to have them close by.

These are our special friends, the Jones family.  Alissa and I have been best friends for years when we both met at a teacher training and then she came to teach at my school.  Before we had kids we used to get together a lot for couples nights- going to dinner and movies and hanging out at each other's houses.  Now it is just added fun having Lilly and Andrew!  They are close friends too and go to the same day care.  

These are our dear friends, Chris and Andrea and their beautiful daughters, Norah and Stella.  Could they be any cuter??  Andrew and Norah are just a couple of months apart in age, and it was so fun being pregnant at the same time as Andrea.  We love getting together to watch the Bachelor and Survivor!  We just love this sweet family!

Andrew with his grandparents- Grandma and Grandpa Huegel.  

And Papa and Ga Ga (by this time, Andrew was officially done posing for photos!  Ha!)  I wanted to make a special point to take a picture of Andrew with every family that came to his party.  The only ones we missed were Greg, Emily, Landon and Logan because they had to leave a little early and I wasn't in photo mode yet!  Ha!

The party was just so fun.  I felt like I could relax a little more and got to visit with most everyone.  It is hard hosting things at your house because I feel like I never get around to talk to everyone.  Doing brunch made it so much easier.  It was a very special day, and we're so grateful to everyone that came to celebrate!

That evening (since it was Andrew's actual birthday), Papa and Ga Ga came back to have dinner with us and have Andrew open their gifts and also his gifts from mommy and daddy.

We went to Andrew's favorite place- IHOP!  Ha!  He loves the smiley face pancake!  And yes, we pretty much ate breakfast all day long!  Ha!

It was so amazing, when we walked in one of our favorite heart friends, Melissa Hooper came running over to see Andrew!  She used to watch Andrew for me the year I worked part time.  Andrew has always had a special bond with her and he acted just like he remembered her!  They moved away for a year but are back in town now and it was so fun to see them!  She was there with her whole family and they all came over and sang to Andrew and gave him money!  It was so sweet!  I am so mad I didn't take a picture but I didn't even think of it until after they were gone!

Here is Andrew watching the restaurant staff sing to him.  They brought him this giant sundae which he loved!

After dinner we headed back to our house to open presents and have more cake!

He was so fun to watch open gifts!  He was so excited about everything!

I had him open this sack first because I had just put little small trinket things, like puzzles and a few books I had found I thought he'd like.  He had much bigger presents to come, and I figured this sack would be a let down after the cool stuff coming soon!  But he was so sweet and still just acted like this was the best stuff he'd ever seen.  He grabbed it and said "A PUZZLE!!!!!!"  We had to laugh at him because he was so excited about everything- even little things.  Sweet boy.

Papa got him a remote control pick up like his.  Look how excited Andrew was!

He got a Toy Story snuggie, which we thought would be good for when he went to the hospital this month.  He loved it, too.

I just loved all his expressions!  Mommy and daddy got him the Toy Story action links Junkyard Escape, which goes with another one he got for Christmas.  They all link together and he just loves this stuff!  He could play with it all day long.

Ga Ga bought him this Evil Dr. Porkchop spaceship and he could not have been more thrilled.  He did not want to go to school the next day because he just wanted to stay home and play with all his new toys.  He was so excited and happy.  It was the perfect way to end my favorite day of the year.  I seriously love Andrew's birthday just as much as Christmas!  I will never get through that day without remembering how scary it was when he came early and had to have open heart surgery just a few days later.  He was so tiny, yet so precious.  Immediately my heart knew what it felt like to love something so much that it could burst.  January 30 will always be that special day that my little miracle, my hero, was born.

Happy 4th Birthday, Andrew!  I love you, to infinity and BEYOND!!!!