Not the news I wanted to hear...

Finding his hand prints in the Cardiology Clinic

Today has been rough.  I went into the appointment nervous and I left feeling broken and scared.  Stephen has always done incredibly well.  His cardiologist was only having him do yearly ECHOS because his heart was so strong and he saw no reason for that to change.  My biggest fear was hearing he need the surgery sooner than later and instead I was blindsided to find out that his heart function has actually decreased...not good =(

While he is still in the normal range, he is resting at the bottom of it.  It is serious enough that he will get put on an ACE inhibitor twice a day in hopes that it will help his heart to not decrease anymore...which would be a sign of something more serious.  If Stephen's heart function were to remain where it is today for the rest of his life he would be fine...if it continues to drop we will have some serious problems.  Problems I am hoping never become a reality =(  This news was hard to hear especially because they have no idea why this happens...it just sometimes does.

As for the surgery he does not think Stephen is quite ready.  He needs to gain a little more weight and it will most likely occur 6-9 months for now.  The problem with his heart now has nothing to do with the surgery so having it (or not having it) will make no difference in its function.

So...the  plan for now is to do repeat ECHOS every 3 months and he will be seen again in October to monitor where his function is at.  Please PRAY that it does not decrease but that it will remain the same... or even better that it will miraculously increase!

These next 3-6-9 months will not be easy for me.  You may not always see the brokenness...but its there.  This is the reality of my life a heart mom.  The are high highs and low lows.  It is scary and unknown and I would really appreciate your prayers.

And though I did not receive the news I was hoping for I will praise God for how well Stephen handled it all.  He was incredible.  He laid still for 45 minutes while they took 114 pictures of his heart.  He was never worried or scared but was all smiles and even tickled the technician.  For that I am grateful!  May God continue to protect him and strengthen him and use his life to touch this world.  I hate the unknowns that lie ahead...but I am grateful to have a God that never changes and will continue to provide for all of our needs.

"The righteous cry out, and the Lord hears them;

    he delivers them from all their troubles.

18 

The Lord is close to the brokenhearted

    and saves those who are crushed in spirit"

 Thank you for your faithful prayers...they truly mean the world to our family!

Much Love In Christ,

Kim

Yearly ECHO

If you haven't noticed I have been pretty quiet on hear lately.  With talks of surgeries and cath labs the gravity of Stephen's condition became all too real and too emotional.  Matter of fact this past week has been hard.  A fellow Heart Mama and friend's daughter Teagan underwent open heart surgery (the one Stephen is awaiting) and I have been wreck on the inside.  I have sat and cried as I have read each update and remembered what it felt like to be in that place and pictured how it will feel to be in that place again soon...and it breaks me.

I break at the thought of that being Stephen.  At the thought of it being him wheeled away and opened up.  At the thought of it being him in pain with writes, line and tubes.  It breaks me.  I have physically ached this past week for my friend and her daughter.   Yet I am also encouraged at Teagan's love of God and her trust in Him and I pray that Stephen too would follow in those steps and handle all of this with as much strength and trust as this sweet little girl has.  If you would like to join me in praying for Teagan you can follow her story at http://babygirlmaxwell.blogspot.com

SO this brings me to tomorrow.  Tomorrow we go down for Stephen's yearly ECHO.  I know full well we will be discussing this future surgery and the timing of it.  I am hoping (and praying) for great news.  I am praying that his heart is strong, his oxygen is good and his body can wait a year (or more)
before undergoing it.  I also know full well that I may not receive the news I wan't to hear...but either way I pray for God's clear guidance.  I wan't to be at peace with the decision...whatever decision that may be.  I wan't to do what is best for Stephen, even if what is best is also the most painful.

So please join me in prayer tomorrow.  His ECHO is at 12:30 and his appointment with his

This little guy always brings me joy!

Cardiologist is at 2:20.  Pray that God would clearly direct our paths.  Pray that Stephen's heart is strong and healthy.  And pray that God would continue to draw Stephen closer to Him and give him the joy, peace and strength he will need in the road to come.  This is also the first time will be able to attempt the ECHO without him needed to be sedated (praise God) so please pray that he is able to lie their rather still for about an hour so they can't get all of the images they need =)

I will try to update in the next few days (maybe even late tomorrow) but we have a big event at our church the next 3 nights that we will be going straight to from the hospital to set up for and run...not ideal timing but it is what it is =)

Thank you for all of your prayers and support...they are truly appreciated!

Much Love in Christ,
Kim

Dinner With Friends

Joe and I are super excited to be attending "Dinner with Friends" this Saturday!  By now you all know how much we value and love the Ronald McDonald House!  This special place is a tremendous asset to our community and we know first hand how their services bless families in crisis.

I encourage you to click on the event and scroll down to the bottom and simply read how this wonderful fundraiser came about.

Dinner with Friends

But before you go I want to share a little more about how the RMH has blessed our family.

While the RMH has 47 guestrooms that provide a "home away from home" for families like ours with a child in medical crisis, most people are unaware that they are not only for overnight guests!  The RMH also provides 3 FREE meals a day to any parent with a child admitted into Rady's Children's Hospital.  How amazing is that!  Whether you are there for a day, a week, a month, or longer they will take care of all your meal needs!

Our family was so blessed by these meals that we have gone back a few times each year to provide them for others.  On some of the hardest days of my life a complete stranger took care of my basic needs.  They gave their time and money to feed me...how beautiful is that?  There were days when I entered the house so broken and scared.  There were times when it was hard to look those serving me in the eye for fear of completely falling apart and there were times when I wanted to make a connection and share our story.  But each day a different group of volunteers took care of me and I find so much beauty in their service.

So please do me a favor...head over to the site above and read about how these two guys, Carlos & Matt, began this wonderful fundraiser benefiting our families "Home Away from Home".

If you would like to attend the event...great!  Joe and I will be there and even get to share a few minutes of our story!  If you can't make the event but would like to contribute any amount that is wonderful!  I usually get around 100 hits on each post so if everyone who read this blog donated even $5 we could help support this fundraiser and raise $500!  And lastly is you could share this event and challenge on your Facebook page we can spread the word to others who may be interested and just need an invitation!

The Ronald McDonald House has seen our family through 2 open heart surgeries, a cardiac catheterization, an oral surgery, and 2 unplanned hospitalizations.  And while I would love to remain on the volunteer side of the counter, I know with Stephen's 3rd surgery looming that we will soon find ourselves in line to receive again.  It is a painful place to be but I am grateful to know that when the times comes we will be well taken care of.

Thank you all for continued prayers for our precious son and thank you for letting me blab over and over about the Ronald McDonald House and the special place it has in our hearts =)

With Much Love & Gratitude,

Kim

Heartiversary

 Taken a few days after his surgery

Today marks Stephen's 3rd "heartiversary".  In the CHD world many parents celebrate the anniversary of a significant open heart surgery (OHS).  April 26th, 2012 was the date of Stephen's first.  This was by far the worst day of my life.  My baby was just 10 days old when I had to watch them wheel him away from me.  He should have been at home in my arms...not on a table in an operating room.  The mere thought of what they had to do to him was, and is, too much for me to handle.  He was so little, so innocent and yet faced with such a steep hill to climb.  
It is strange having a "medically fragile" child with a condition that is so "hidden".  Most people will never know or grasp the true miracle that he is.  The fact that Stephen never required a g-tube or fortified milk alone was a miracle.  Unlike most heart babies he never struggled to put on weight and even grew himself a few chins =)  Simply put... Stephen is the "best case scenario" for his condition.  I get asked often if he is "done" or "fixed" and if the next surgery will be the last one.  The hard truth is that there is currently no cure for Stephen's condition.  All 3 planned surgeries are considered palliative.  Other than a 3rd OHS we truly don't know what the future holds.  

While we are trying to decide the timing of his 3rd surgery, and seeking opinions, the thought of him having to go through it all again just breaks me.  It breaks me to think about all that he will have to endure for a third time and what we will have to say to him in preparation for the big day.  How do you even begin to put it in words?  It is incredibly painful to watch your baby be wheeled away and it breaks me to think about how we will have to let go and hand him over once again and how he will have to wake up in such a different state then when they put him to sleep.  Stephen is so full of joy and I don't want anything to take that away from him.  It breaks me to think that there will be days where I won't see a smile on his face. 

And while I know that this is all just "sometime in the future" I find myself broken.

There is a possibility that this reality may be sooner than I would like.  We will be meeting with a surgeon in May and discussing our options regarding the timing of the Fontan surgery.  Though as one cardiologist has put it...
"We don't know the answers re: Fontan timing. There is essentially no compelling literature to support early or late. Keep in mind that you are trying to decide between two sub-optimal (at best) options."  

That is the truth.  We have 2 "sub-optimal...at best" options.  Stephens heart will most likely never be made whole on this side of eternity.  I know he looks great and seems normal, and in some ways he is, but the truth is that Stephen will most likely always have an upward hill to climb.  This breaks me!

 Taken a few days after his surgery

But as I learned April 26, 2012, when I am broken... His power is made perfect.  Never before did I rely upon my God than the day of Stephen's first surgery.  It was the first time in my life that I felt, and was, completely and utterly out of control.  My son's life was placed in someone else's hands.  His heart, the size of a walnut, was removed and operated on. Never before had I so desperately cry out to the Lord as I did that day.  And in my brokenness, and through the tears, I very clearly felt God's presence and knew that irregardless of the outcome Hope would remain.  When I am weak...He is strong.   

And this is my prayer.  That God would continue to shape and mold me through these trials. That His power would be made perfect in my weakness and that His grace would be sufficient.  I pray that he would help guide us in decision making and give Stephen, and all of us, the strength and peace to get through road ahead.  I pray that Stephen's joy will always remain and that God would continue to use this amazing little man to touch the hearts and lives of others.  And I pray that Stephen will trust in our Lord all of the days of His life and that he would dwell in the house of the Lord forever.

So please continue to pray for our little heart hero.  He still has an uphill battle. 
 

“The Lord bless you and keep you;
 The Lord make His face shine upon you,
And be gracious to you;

The Lord lift up His countenance upon you,
And give you peace.”’

Happy Heartiversary Buddy!

You are strong, brave and joyful and you have made your mommy such a better person.  

May God continue to bless you and mold your sweet little heart to follow Him! 

Birthday Celebrations Part 2

THE PARTY!!!!

Stephen chose to have a Disney Cars Birthday party...actually in his words he wanted a "Lightning & Mater party"!  I had fun (as always) running with the theme and making decorations.  

I also had a little way too much fun making a backdrop and props for a photo booth!  It was a hit with the kids...and adults!

Stephen had a blast jumping in a bounce house, playing with friends, taking silly pictures and opening presents!  He was a little shy when everyone started singing "Happy Birthday" but he loved his brownie and ice cream =)  And he got a Mike Trout Angels jersey like the rest of his siblings!  He has now worn it 2 days in a row and doesn't want to take it off.  Don't tell Trout..but he thought it was Philip River's Angels jersey ;)  

Stephen has talked about his birthday and party all week :)  He even asked me how long until he turns 7 (his favorite number).  He is growing up so fast and I am trying to soak all of these moments in.  It is hard watching my "baby" not be a baby anymore.  He is such a big boy these days! 

Thank you to all who have prayed for Stephen and our family these past three years.  I know many of you still have the heart magnet on your fridge and faithfully pray for our son and we are so grateful that you do!   Please continue to pray for wisdom in upcoming surgeries (I will have an update in a few days of where we are at) and that this little guy never looses his joy!

God Bless!

Birthday Celebrations Part 1

We have a blast celebrating Stephen turning 3....and he LOVED every minute of it!  On his birthday he woke up to decorations and a few presents.  We got him a new lightening McQueen scooter, a Dusty figurine from Planes Fire & Rescue and some school books.  In true Stephen fashion he immediately chose to "play" with his favorite...schoolwork!  This kid asks to do school work EVERY day.  I have put my foot down and say no on weekends so I can get a break ;)

This video doesn't capture his excitement but I thought it was so cute that he was wondering where "all the people" were to watch him open his presents =)

After our birthday tradition of sprinkle pancakes for breakfast we took off for Legoland!  Once you turn 3 you are allowed to go on a super fun ride where you get to drive a little car all by yourself. This kid was in heaven and went on it 7 times!

All in all we had a GREAT time and after 6 hours of fun this kid was OUT on the way home!!!

We had such a great time celebrating Stephen and he loved every minute of it!  He would proudly walk around and say "I 3!" or "It's my Birfday"  (yes I spelled it like he pronounces it) =)

I shed a few tears times as I sat and watched him glow with excitement.  This little guy has gone through so much and yet remains so full of joy.  I am so very blessed to be his mommy and I can hardly believe that my baby is 3!  

Happy Birthday Buddy!

3 years ago a beautiful soul entered this world and his life forever changed mine.  The anniversary of his birth brings such a mixed bag of emotions.  It is with sincere gratitude that I look back on these past 3 years and thank the Lord for Stephen's life.  While so many heart heros fail to see their first birthday, Stephen has seen 3 and I know how blessed we are.

Each year I go back and read through the blog posts from the beginning.  They tell a beautiful story of the bravest little guy I know and capture so many of our raw emotions.  They show our cries to God as well as our praises.  They bring me to tears and yet bring joy to my heart.  It has been a hard journey but also a beautiful one.

This picture below shows the 10 seconds I got to hold my baby on the day of his birth.  He had been in this world for a good 20 minutes before I even saw a glimpse of his face and it would be days before he would be in my arms again.

There was a team of 11 doctors, nurses, specialists, respiratory therapists, and a transport team that crowded the delivery room.  They immediately placed IV's and wires on his tiny little body.  While most moms wait to hear their babies weight and height, I waited to hear he was stable and able to be moved.  The first glimpse I had of his face came from a photo Joe was able to sneak on his phone.   I then found myself for the next few hours stuck in one hospital while my baby and husband were in another...a heartbreaking place to be.  I was relieved when they finally let Joe wheel me down to Radys to be with him.  I sat for hours in a wheel chair next to his bed.  There was nothing I could do for him but sit and pray.  At this point he was slightly struggling and even little noises would agitate him and cause his oxygen saturations to drop.  So I sat and prayed...and snuck in his first picture with his daddy =)

While this day was in so many ways a struggle, it is such a blessing to be sitting here 3 years later with so much to be thankful for and so much to celebrate!  God has walked this road with us every step of the way.  He has been our rock and our refuge and we would not be who we are today without Him.  I am so thankful for the life and provision he has granted Stephen and I pray that he would continue to strengthen his heart and use Stephen's journey for His glory.

There is also so much to celebrate today!  We celebrate his life and all of the joy he has brought to our lives!  We celebrate the obstacles he has overcome and the strength he has shown.  We celebrate the impact his life has made and how God has done "immeasurably more" than we could have dreamed.  We celebrate Stephen!  In all his wonderful silliness we celebrate Stephen today!

As per Stephen's request we will be spending the day at Legoland!  He has been counting down all week (with help from his siblings) for today.  He is sooooo excited for his birthday and that just makes it extra special for me =)

He has grown so much these past few months!  He still LOVES school work and asks to do it EVERY day.  He knows almost all of his letters and numbers and loves to count.  He is completely done with diapers, sleeps in the bottom bunk, can peddle his tricycle by himself and hits a baseball pitched at him.  To a mom who was told he would most likely be delayed...these are all little miracles!

So today I wish my little buddy a very HAPPY BIRTHDAY!

My God continue to bless his life and grant many more Birthdays to come!