Pre-Halloween Fun

Our fall fun started with a wonderful fall festival and a community downtown trick-or-treat... gotta love our town!  This year is even more fun than last (I have a feeling I'll be saying that for years to come, ha!), because the kids are old enough now that they really get excited.  The wonder of holidays is incredible to see in their faces!  In fact, they have already mapped out which holiday happens next... although they don't quite understand why they can't dress up and be another character for Christmas.

The Fall Festival was at the school where DB and I work, and it is definitely a highlight.  It's a great, family, festival with booths manned by the students.  Adorable!  

Also, we got to see DB in the dunking booth... haha!

There were enough holes for everyone!

You should have seen Olivia, absolutely adamant she was only going to be the cat.

George learns to putt from one of my favorite 10th graders, and a swimmer :) 

This was HUGE!  I mentioned face painting to Olivia and she looked at me like I was crazy... just why would anyone paint on their face?!  Then she saw Caitlyn (in the background) with a cute pumpkin on her face... and asked the face painters if they could make a princess.  When they replied "yes", Olivia was sold!  Although, note the completely tense body position, ha!

I love my princess!  (And I was seriously impressed!)

George, on the other hand, thought purposely painting on your face sounded awesome!   I'm pretty sure he was happy about the cute girl painting it, too :)

Check out my cool pumpkin!

Samuel wasn't much into the face painting, but this balloon brought hours (literally) of laughs!  Although, at one point he was so fixated on the balloon that he wandered away - agh!

The kiddos were joined at the festival by one of their best friends from school, who was already dressed up to head downtown and trick-or-treat.  Needless to say, my kids wanted to change into their costumes the minute they saw Evelyn!

Gotta love those sweet moments between friends :)

Off we went to trick-or-treat downtown!  This is an annual event, but our first time going.  The trick-or-treating was a little nutty, but we all enjoyed walking and seeing all the costumes.  People are so creative!  It was also nice to experience our first witch costume in broad daylight, ha!  If we would have seen her in the dark, I'm pretty sure Olivia would have actually passed out.

George the Garbage Man!  He picked this for his costume early on, and was so excited!  Trashy Town is still a favorite book, and let's face it, garbage trucks are super cool.  I have to say, I'm seriously impressed with the little trashcan that DB made.

Samuel as Batman!

My mom actually sent this, complete with a handmade cape!  She also sent Spider Man and Wonder Woman, also with handmade capes.  They are the coolest! George wears the spider man all the time, but so far Olivia is really just into the handmade headband with jewels and the shiny blue skirt, sigh. 

And of course Fancy Nancy there in the middle :)

Hysterical because she's  Fancy Nancy every day!  Gotta love a book that teaches words like iridescent, bonjour, expert, plume, and fuchsia... just to name a few. 

Omi and her boys after a wonderful, long, afternoon :)  

Surgery Whirlwind Recap

It is so hard to believe it's been almost two weeks since Samuel's surgery!  Partially because life is just busy, but mainly because he is doing so well.  If you were to see that boy walking down the street (or climbing on the couch, or running through the house, etc.) you would never guess that nice big "boo boo" is under his shirt.  Amazing.

Everything has seemed to go so quickly... now that it's over :)  Here's a run down...

We spent eight hours in pre-op the day before the surgery, and Samuel spent most of it being curious :)  

One upside, there always has to be one, is we got to know twin 10-year old boys and their parents pretty well... one of them was having surgery the next day, too, so we spent that eight hours pretty close together.  When everyone started to get a little delirious, Samuel kept us entertained with his I've-been-confined-too-long craziness :)

I don't have any photos from that night, but our good friends Sarah and Bo who live close to the hospital were kind enough to take all three of us in.  (Of course, Omi was also kind enough to stay an extra night so we didn't have to make the drive back and forth at insane hours!)  It was great fun, and an excellent distraction, to spend time with them!  Plus, it made our 5:30am arrival time at the hospital much more bearable with a 30-minute drive vs. 90+ minutes!

 Daddy sad, Samuel happy

 Daddy happy, Samuel sad

Alright folks, what's the deal... you seem a little emotional and somehow I ended up back in this blue gown.  What in the world?!

They took our boy from us around 6:30, surgery started around 7:30, and by 10am got the great news that he was off bypass... hooray!  The surgery lasted another hour and a half, and around noon we got to see our boy.  Even bigger hooray!

Happy daddy after successful surgery!

Crazy, heart surgery at two pounds, and now at 30... the good news is, we should be finished :)

Starting to wake up... Samuel was already filling in missing words as I whispered lines some of his favorite songs and books  :) And notice he is extubated! It happened around 2pm!  Unreal.  My bad lung boy extubated that quickly... never saw it coming.  Always hoped of course!  This was a huge sign of just how well he did during the surgery.

Still not quite awake, but requesting water and wanting to know we were there.

Oh my goodness!  That same afternoon, sitting up!  And making us laugh :)

Because Samuel was back in ICU for the night (a different one, specifically for Peds Cardio), we were back at the Ronald McDonald house.  It was surreal to walk through those doors.  I haven't really been back for three years, but because things were going so well, he was in great hands, and I knew I'd be sleeping in the hospital for the next few nights, we took the opportunity to sleep.  As I walked in the door, part of me flashed back... a bit of anxiety, but once that calmed down I remembered what a great job the folks there do of making you feel comfortable and providing as much as they can so all you have to worry about is your baby.  What an incredible mission!  (I still can't believe I lived there for nine weeks... feels like a lifetime ago.)

Oh my goodness... again!  This is on Friday - the DAY AFTER surgery!  It's hard to miss the expression of my super Samuel, but also note that he's not in ICU anymore!  He was transferred to the floor... we were amazed it happened so soon.

In addition to the heart, of course, we were also pretty concerned about Samuel's lungs.  We still just don't know how they're going to react... case in point being the common cold he got this past spring that sent him in a helicopter to the hospital, sheesh!  BUT, his lungs were rock stars!!!  In fact, the surgeon even said that while they didn't look normal (no surprise there), they functioned completely normal!  NORMAL!  Just amazing.

The next day... Saturday... two days post op... the pacing wires and chest tube came out.  Need I say OMG for the third time in three photos?!

Another cool thing happened when the chest tube came out, besides just getting it out... they did a chest xray to be sure excess gas didn't sneak in when they pulled the tube, and in the process of course got an xray of Samuel's lungs.  Ready for this?  They look amazing!  Now, they do still have lung disease, and don't have O2 sats that are normal yet... but they look like lungs I never thought I would see on this boy.  The cardiologist told me he even triple checked to be sure he was looking at the right xray :)

This might have been the most amazing of all :)  It's Sunday in this photo... the surgery was Thursday!  Yep, he's walking around like the crazy man he is - a little wobbly at first, but once he got his sea legs back there was no stopping him.

In fact, he walked himself down to, and around, the Atrium (best kids room ever)...

... and then right out the door!  On SUNDAY!

To give you an idea, the earliest we even thought was possible - if everything went perfect - was Monday.  Unbelievable.

Another perk of an early discharge was of course seeing George and Olivia, man did I miss them!  Omi, Uncle Jay, and Cousin Madison were absolutely wonderful to take over while we were gone - in fact, I'm not sure G and O missed us at all, ha!  I'm pretty sure they grew an inch in the five days we were gone, man, I don't want to miss a second!  They were great at welcoming Samuel home and asking all sorts of 3-year old questions... luckily when they asked how the doctors cut Samuel's chest, they were content with the answer "medical tools."  :)

The next day George and Olivia took him on a short walk to keep him moving... and he did :)

Since the surgery, Samuel's heart is considered normal :)  The patch looks great (it's made of gortex, isn't that crazy?!), they stitched a few other small holes when they were in there, the pressures have all stayed where they should... and follow up will be routine.  Routine... not a word we usually here... I don't mind it all :)

It's a Hot Dog Car!

Thanks to the world of Richard Scarry, my kiddos totally believed me when I said we going to see a hot dog car :)  After all, they've seen a pickle car in their books, so why couldn't it be true?!

However, when they actually saw the hot dog car, they were in disbelief... and then absolutely thrilled!  Ha!  It was hysterical!

They loved looking in the windows and wanted to know everything about the car, and were so excited when they saw the cool door come out of the side of the hot dog.  Oh, to be three! 

I'm bummed there's not audio with this photo... waving accompanied by "Good Bye Hot Dog Car!!!" for the entire five minutes it took for them to climb into the car and pull away.

Surgery Success!

I'm still in shock... we're already home from surgery!  A longer post is coming soon, with some pictures that will bring a huge smile to your face, but I wanted to give the good news now!

More details to come too (sorry, I'm completely whooped and needing to crawl into bed), but in general the surgery was a huge success!  Not only does the patch in Samuel's heart look great - no leaks and the pressures look good, but his lungs held up beautifully.  In fact, his lungs acted "normal" :)  This is amazing!!!

We came home yesterday, way before anyone anticipated, and are settling back into life at home.  DB and I are anxious for his chest to heal, but Samuel is a complete rock star and is handling everything with his usual easy-breezy style :)  In fact, to prove his incredibleness, as if that was necessary, he walked out of the hospital yesterday... walked... on his own!  Who does that three days after open heart?!  Go Samuel :)

In the meantime...

I have so much to post!  I swore that once I got caught up, I would stay there... but I can't complain, the things that have kept me from posting have been pretty awesome :)  One of them being vacation... yes, WE were approved to get on a plane!  More about that later...

I'll have to back track and play catch up a bit later, this is a big week for our family and I know the blog is an easy way to keep everyone in the loop.  We will be at pre-op nearly all day Wednesday, and then Samuel's heart surgery is on Thursday morning.  (Yes, it was originally scheduled for two days earlier, but an emergency in peds cardio surgery (not us!) meant everyone had to shuffle a bit.  Sitting on pins and needles for another two days isn't fun, but it beats being the emergency - we've been there, and that's definitely the worst.)

I talked a bit about this heart surgery in this post, but to be honest it was a long post and I kind of buried it.  Looking back, I'm wondering if I buried it intentionally.  I was, and still am, having a really hard time with this surgery.  I cried a lot that day, and I've cried a lot since... I also think I might be a bit angry.  I don't know if that's the right word.  Not angry at anyone, this isn't anyone's fault, but I just hate this and I'm so frustrated that this has to be so difficult.  I know that sounds silly, but this was supposed to be easy as far as heart surgeries go.  I know that he'll be fine, I just absolutely hate that he has to go through this.  He's been through so much, why can't this surgery be easier.

Without rewriting the post I linked to above, this was supposed to be something we could fix in a cath lab.  George had the same hole fixed when he was a year old, and it was a very long procedure but it was not invasive and we were home in no time with no formal rehab.  At our last appointment we knew we'd be scheduling surgery (it's time), but it turns out the hole is too big to be fixed in a cath lab.  Basically, they can't place a coil to fill the hole like they did with George, so they'll have to manually patch the heart... which means they have to stop it and put him on bypass... which means they have to open up his chest.  Even typing it makes me feel like I have a 1,000 pound weight on my heart.

Like I said, I know he'll be fine... I don't know why this one is hitting me so hard, maybe because I saw DB go through open heart last summer and I know what we're in for, maybe it's a normal parent response, and maybe I am just actually losing it a little bit ;)  Thank you for your kind words and prayers, I can't wait to blog about how fabulous Samuel is doing!

Go Samuel!

Happy Birthday America!

Happy 4th of July!  A little bit late... but no less happy, ha!  We had a great day at home, which was a real treat.  Somehow summer has been more scheduled than I feel like summer should be.  The good news is everyone is having a good time, even DB whose summer break now includes 3-year olds :)  Not quite the same as the surfing days of the past, but he claims this is even better and has the stories to prove it.  Of course, we're still getting to the beach so I think that helps, too.

I was waiting to post this thinking I had to have made the kiddos pose for a group shot!  Nope... but one of the best things about birthdays is cake, and I did get photos of that, kind of...

George, where's the cake?!

In my tummy!

Actually, half of it might be on your face, ha!

Then there's my girl, working very hard to enjoy AND stay clean...

... but eventually can't handle it anymore and must get every last lick of icing :)

Now that is my girl!

Samuel even got in on the cake just a bit.  About a second before this was taken, he reached up on his own and swiped a dab of icing for a quick taste.  YEA!

DB both made the cake and was quite creative with his USA decorating :)  The singing of the birthday song is one I will remember... everyone sang, but Samuel was not happy at all about the candles being blown out. Poor guy!  We sang it again, because that's half the fun, and when he knew the song was nearing the end he hid his face and cried!  We did not sing it a third time, but no one minded because that meant it was time to eat.

New Shoes

What a wonderful reminder of how far Samuel has come in the last year and a half.  Two weeks ago Samuel got his fifth pair of AFO/SMO/Inserts... fifth pair in the last 18 months!  And not because anything was wrong with them, simply because he has gotten so much better at walking!  The stronger he has gotten, the less support he has needed... each pair represents a new strength in Samuel's overall leg strength, increase in ability to handle mobility, increase in coordination, etc.  Wow.

From the left: First pair - solid and all the way up the calf... 

but I loved the lightening bolts on the back :)

Second pair - almost the same as the first, but with a hinged ankle.

Third pair - no more high leg support.

Fourth pair - free up the toes.

Fifth, and most recent pair - the least support yet, more like an advanced insert.