Thursday, May 31, 2012

spring sing

Andrew had his other Preschool spring program and graduation a couple of weeks ago.  This is his school through our local district that he was bused to four afternoons a week because of his IEP.  We loved this school so much, and he had one of the best teachers I've ever known.  He just learned so much, we were so grateful that he got to attend this school since he was 3.
They had a spring concert that was really cute.
Andrew was cracking me up with all the motions and songs!  He did such a good job!
This was a silly song that got all the kids giggling!
After the singing they put on their hats they had made and they got their names called for their diplomas.  What is the fascination with looking through the diploma like this?  Ha!
This was his little preschool class.  A great group of kids!  I love how the little girl next to him in the purple dress has her arm around him!  Too cute!  All the girls always love Andrew!

This is his best buddy, Nicholas.  These two have been friends for two years.  Nicholas' dad told me that Andrew was his first friend and that he talks about Andrew all the time.  He sent Andrew a video message when Andrew had his surgery.  He is such a sweet little guy!
These three are best pals- Andrew, Payton and Nicholas
This is Miss Erin.  I cannot say enough about her.  I almost wanted to cry on his last day because I love her so much and I will miss her!  Ha!  She is the most creative person and an amazing teacher.  The little projects she has the kids do are so awesome.  Andrew has learned so much from her, and we are so grateful.  She has done a lot for him!  She is very structured, which Andrew craves.  He learned about "school" from her.  What school is all about and how important it is.  He knows how to behave and he respects Miss Erin so much.  I can only pray that because of her example, he will always feel this way about his teachers and school.
As a last day summer "treat" we gave Miss Erin this little idea I got from Pinterest.  It says "thank you for quenching my thirst for knowledge" and it is filled with mini crystal light packets and a gift card to Starbucks.  I printed off the picture and put it on a notecard to write her a thank you note.  Thank you notes really mean the most to teachers!

School is officially over.  It is the official start to summer.  I can't believe it, but it is finally here!  Tomorrow I will be moving boxes out of my school building because I have accepted a 3rd grade position at a different school within my same district.  I was ready for a change, and I am so excited for this new opportunity.  I have wanted to teach 3rd grade for as long as I can remember.  I just know I'm going to love it!

Here's to a summer full of fun and memory-making!!

Monday, May 28, 2012

mother's day weekend

I figured I'd better get my Mother's Day update done before June!  I am getting so behind!  But after this week, school will be over and I'll be able to enjoy my summer home with my kids and have plenty of time to blog (well, when I'm not playing with the kids!)  I can't wait!
Andrew's day care had it's annual Mother's Day brunch before the weekend began.  
Usually every year this is the Friday before and my mom and I take our personal days from work to be with Andrew and do special things, but this year his Graduation was that Friday so I couldn't take both days off.  I think he thought he was not going to be staying at school!  When I went to tell him goodbye he got all sad and said "Why are you leaving me here?"  Broke my heart!  I had to remind him we would be together the whole next day for his graduation.
He had made this for me and gave it to me the morning of the Mother's Day brunch.  It is his sweet little hand with a heart inside.
This poem came with it.  Handmade things are the most special, because they are made with love.  This meant the world to me, and Andrew was so proud giving it to me.  It just made me cry!  
That weekend we worked on a little project for Ga Ga I found on pinterest.
Yes, I decided to only try to pin things I plan to do!  Otherwise it is way too overwhelming!
But this was a fun idea I thought was do-able, and it turned out even better than the one on pinterest!
I bought a pot at Micheals and had the kids stamp their handprints and sign their names next to it.  It made it more special (the one shown just had it in a box made from popsicle sticks too).  I think this was easier, and cuter!
Before heading to my mom's on Mother's Day we went to a special birthday party for a 1 year old little boy!  This is Harrison, Kerigan's first boyfriend.  His mama, Andrea, and I have become great friends working together at school.  She teaches 5th grade and I teach 4th.  We were trying to get pregnant at the same time with these two.  She beat me by 2 months!  Ha!  It was fun being pregnant together.  We were always calling each other with questions and stories!  
This cracks me up!  My daughter grabbing this toy that isn't even hers!  Ha!  She's already trying to walk all over the boys!
We headed to my mom's after the party and had a special grill out!  We were eating cheese and crackers and Andrew likes me to spell letters on his crackers with squeeze cheese!  Ha!  It's a good way to learn letters!
First Mother's Day with her granddaughter
Eating on my mom's patio is my all time favorite thing.  I love when the weather is nice enough that we can do this.  Papa grilled the best steaks and daddy cleaned up!  A perfect day with all of my favorite people.  It doesn't get much better!
My sweet little man with a messy face!  That is so typical of him!
3 Generations
Kerigan had fun with Papa!  He was bouncing her up and down and she was giggling!
My precious babies... they are what life is all about!

Saturday, May 26, 2012

god's work

This is another one of those posts I almost need to let swirl around in my mind a little longer, too!  But I know so many of you are waiting for the details, I know I can't wait any longer.  We got home this afternoon, crashed for about two hours (Andrew and daddy in Andrew's bed, mommy and Kerigan in our bed!), did loads of laundry, caught up on dishes and gave the kids a bath.  Now everything is processed, the kids are tucked in clean sheets, and I am able to sit down and think.

Let it all sink in.

Last time I updated after his cath, I had a hard time knowing what to say because the news wasn't good.  It was very hard to write.  This is equally as difficult to write, but this time because I am having trouble coming up with words to explain how incredibly grateful I am.  Words that will do justice to this miracle we all just witnessed.  Words that will clearly give glory to God, because He is the reason for all of it.
Sweet Kerigan sporting Andrew's old heart romper... Supporting her brother!
Thank goodness Ga Ga showed up with the "Ice pack!" (aka iPad)

We are just overwhelmed, to say the least.  This is one of the first times (I think it is the first time!) that a cath has gone off without a hitch.  Not only was it perfectly orchestrated, but it also changed our son's life.  That might sound a little drastic to you.  But honestly, a true miracle happened.  And if the work that was done continues to improve the pressure.... we are talking about Andrew living a normal life.  And that is huge.
Playing together while waiting to go back

Once I had a chance to sit down and relax this afternoon, I went back to Andrew's carepage and reread from the beginning of this journey.  Andrew has been through so much since then.  I felt a short summary was necessary to insert here.  I think it makes the end result of this update even more miraculous.  So bear with me...
Playing with Kerigan while waiting for cath...
Almost ready for the cath lab... this is where we go right before they take him in

Andrew had his full repair of Tetralogy of Fallot when he was 7 months old.  At that time, we were hopeful (I like to call it clueless now!) that it would be his last surgery.  His last "heart" issue that was resolved and we would be finished with this journey.  Well, obviously, that wasn't the case.  2 months later is when we learned that his heart had dangerously high pressure, caused by the repair surgery which opened up his main pulmonary artery and increased the blood flow in his heart.  This increased blood flow was supposed to make the branch PA's grow.  

It didn't.

The result was, very high pressure, and a trip to the cath lab.  I'll never forget Dr. Divekar coming out of the lab, sweating, after about 5 hours of working on our son.  He was concerned.  Andrew's pressure in the right ventricle was higher than the pressure in his body.  We were terrified. He wanted to place a stent in his PA.  We were crushed, knowing that eventually he would outgrow that stent, and need another open heart surgery.

Welcome to the heart journey.  Reality check.  That was when we learned this is never going to be "over."

So the stent was placed at 9 months old.  Since then, he has had countless caths.  To add more stents, to widen them.  We have run into trouble with the placement of one of them, making it difficult to balloon.  At age 4, Andrew had surgery because he had outgrown the stents.  A few months later (last September), another stent had to be placed because the PA's did not stay open after that surgery and the pressure was creeping back up.

This has been a roller coaster ride, to say the least.  We had been told that Andrew could live with high pressure for a while, but over time it would damage his heart.  He would eventually start to lose energy and not be able to keep up with his peers (like he can now).  He would basically deteriorate over time if this pressure couldn't get under control.

And in September, it wasn't looking like we had much hope for improvement.

Insert GOD here.

Because only He could have orchestrated what happened yesterday.

We went into this with fairly low expectations.  We are used to being prepared for the worst.  I was fully expecting more stents, and for them not to bring the pressure down exceptionally low.  To give you an idea... his pressure began in the 90's when this all started.  A "normal" person is in the 20's.  Basically all of his life he's been sitting in the high 50's and 60's (since the intervention of the stents) a good majority of the time.  We were running out of hope.  We were afraid the statement "There's nothing more we can do" was coming soon.

Until today.

Getting his vitals when we arrived...

This time when the doctor pulled us into that room across from the big steel doors where my baby was lying on a cold operating table... he was smiling.  He told us he's as happy as he's ever been before.  He started by explaining that there is new research out of Boston that encourages the use of high pressure ballooning in cases like Andrew's.  That what he was doing before was not enough, and it would never improve if he didn't get more risky (And can I add that I'm glad he didn't tell us this before he started!  Ha!).

He showed us 3 drastically different photographs on the computer, as we watched blood pumping through our son's body and his heart beating on the screen.  The first picture was of the left PA stent and how narrow the area just beyond the stent was when he began the procedure.  The stent was nice and wide, but the area beyond it was tiny.  Not growing.  Then it got a little bigger, then a little smaller again.  Basically, it was uneven, and narrow in areas that was restricting his blood flow.
In the recovery room with daddy right after the cath...

The last picture brought us to our knees.  He was able to balloon that area and completely open the left PA.  Almost equal to the width of the stent, which was about 8mm.  Even all the way across.  With a balloon.  Not another stent.  This meant that nothing artificial was added, yet we still had amazing success.  The area beyond the stent started at 4mm, and ballooned to 7.8, almost equal to that of the stent.  His pressure came way down, too.  But I won't tell you the number... not quite yet.  Because overnight the number got even lower.  And it's pretty exciting.

Andrew did really well the whole time.  He was extra sleepy because they are starting a new medicine to give at the end of a procedure to keep the kids calm, which is good, but it always makes me a little nervous when he doesn't wake up right away.
Then he got some visitors... and they were worth waking up for!  His cousins, Evi and Jayden, are so special to him.  He loves all of his cousins so much, and he wants to be with them all, all the time.  Most of them live far away, but we are blessed enough to live just across town from these two.  They are seriously pretty much his favorite little people.  
It really meant a lot to me that Aunt Rachel brought them to visit just to cheer Andrew up.  That's a long drive for something so simple.  But it wasn't simple.  It meant the world to Andrew and to me.  He was so bored and upset because he couldn't play, so they sat up in bed with him, watched a movie, and did puzzles on his tray with him.  They also brought him the best present ever- a new toy from Madagascar 3.  Anyone who knows Andrew knows he is obsessed with happy meal toys.  He has been waiting for these for over a month.  We didn't think they were coming out yet, but they surprised him!  Evi knows how much Andrew loves them, so she gave hers to him.  I thought that was the sweetest thing ever.  When they were leaving, after they hugged and kissed each other, Andrew hollered "Evi!?"  She stopped and turned around... he said "Thank you for my Madagascar happy meal toy." That was a pretty special moment.  You guys made his day!  Thanks so much for coming, Rachel!
Things were a little different this time with this little girl in tow!  She's a mover, and she wants down all the time!  But I wasn't about to let her crawl on that germy hospital floor!  She seemed concerned about her Bubba.   She was with us the whole time- watched him get his blood drawn, watched him go into the cath lab... she is learning what it's like to be a sibling of a heart child.  And she handled it like a champ.
Last night my little man was starved!  Around 7:00 as we were all eating supper, he blurts out "I'm hungry!"  Ha!  Usually I don't think to feed him that soon after a cath, because he has gotten an upset tummy before.  I was a little nervous, but he just kept shoveling it in!
He seriously ate almost all of this!  Ha!
He kept it down just fine, and wanted more in the morning!  He asked for pancakes, eggs and bacon.  He ate almost all of it (not taking his eyes off his movie!)
After breakfast we rode down the hall in the special hospital car for his echo.  And this is the fun part...
This is the amazing Dr. Divekar.  We are so grateful to him.  He has done so much for our son, and we could never thank him enough.  I am so grateful that he took the time to do the research and learn new ways to treat Andrew's condition.  Because he wasn't willing to give up, either.  He didn't want to tell us there was nothing more he could do.  And that is another reason we love this man, and this hospital.
After his echo we were literally skipping down the hall back to our room... Well, and we were racing.  Kerigan and Papa vs. Mommy and Andrew.  Wanna know why we were skipping?  Remember when I told you that his pressure used to be 90?  That's it's been in the 60's for most of his life?  And that 20 is "normal?"

He came out of the echo today with a pressure of 38!!!!!!!

And that is not a typo!  I said 38.  And the hope is that number will even improve more over time, with his newly opened left PA.  If nothing else, we'll still take "stable," because 38 is awesome.  Sure, it's not 20.  But compared to where he was before, and where we thought we were headed?  It's nothing short of a miracle.

I don't even know how to express my gratitude to these doctors, and most of all, to God.  Just as we've always known, Andrew is meant to be here.  He is going to live a long and happy life.  And a healthy one.  What we've been praying for for so long has finally happened.  The pressure has come down.  Considerably.

God intervened.
That's the only explanation.
Thank you for all of your support and prayers.  May you all witness this miracle with us, and I pray that through Andrew, you can say that you have seen the work of God, and the power of prayer.

I will give you a new heart and put a new spirit in you...
Ezekiel 36:26

Friday, May 25, 2012

cath update- good news!

So sorry it took so long for me to update here...It is easier to post on Facebook but I forget sometimes that not everyone follows there!  Not to mention, it is so much different this time with a ten month old crawling everywhere and demanding attention, in addition to Andrew!  I can hardly divide my time let alone do an update. Thank goodness Ga Ga and Papa took Kerigan to the hotel tonight.

This will be quick because I am ready to crawl in bed with my little man... but I wanted to thank everyone for your prayers today- they worked!  He is sleeping tonight with a considerably larger pulmonary artery!  More details to come... but things went better than expected and the doctor was very happy. He was able to balloon to quite a large size and get lots of blood flow through them! We are beyond thrilled and going to bed full of peace tonight.  God has worked yet another miracle.

Thanks again for all of your support today!

cath in progress...

The cath is underway!  Thanks to those of you following my facebook updates and for all the comments and prayers!  We appreciate it so much.  Andrew wasn't very happy about coming to the hospital this morning, or about not getting to eat breakfast, but he handled it like a champ.  He never once asked for a snack or drink- he knew what the answer would be.  He's been entertained by movies and the iPad and we didn't have to wait too long for him to go in- 11:30 they took him back.  He got sleepy medicine this time (versed), which I don't think he really needed but it was anesthesia's decision to give it to him.  Basically, it made him "loopy" before they brought him back so that being separated from us would go smoothly.  That was a sneaky way of not having mommy go back in the lab with him... NOT happening!  I still asked to go back as usual and I talked to him and held his hand the whole time.  I know he heard me and knew I was there.  He might not remember it, but it was important for me to be there at the time.

We've gotten severa updates.  He seems to be doing well.  Right now they are working on ballooning the left PA.  We are anxiously awaiting updates. 

Thank you so much for your prayers today.  We all appreciate it!

Wednesday, May 23, 2012

upcoming cath and cute pics

I am getting so behind on blogging... the end of the school year is a few short days away, but for some reason it feels like months!!  Ha!  I still have to post about Mother's Day, Andrew's other preschool graduation, and his T-Ball games!  But for now, I just wanted to let everyone know what's ahead this week for Andrew.  And intersperse it with some cute pictures to boost it up a bit!
Andrew will be having a cath this Friday in Iowa City.  He had a cardio appointment at the beginning of May, and everything looked "stable."  However, back in September at his last cath, we didn't get the most promising news, and doctors still wanted to see us back in 6-9 months to see what more they could try to do to widen his stubborn pulmonary arteries, and lower the pressure in his heart.
 This has been planned for a couple of weeks, but Andrew caught a little bug last week (why does that always happen right before all of his surgeries and procedures??)  I think it was strep- he was put on an antibiotic so I didn't think they would want to go ahead with the cath.  But I talked to them this week and they said it is safe to proceed with it.  So he is second case on Friday morning.  I will be updating as much as I can.  However, with Kerigan now added to the mix, there aren't as many of us staying in the room with Andrew so I will be by myself with him overnight.  
In the meantime, we'd appreciate any prayers you could send our way!  For a successful cath, and also for the interventions to work, once and for all!
Do these two not just melt your heart?
She smiles like this at her brother pretty much all the time.

You can just see here how much he adores her, can't you?
Thanks for your continued prayers!  If you want to go back to read the results from the last cath, you'll see why we are more than a little nervous about this one!

Thanks for praying for that miracle with us!

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