What is CHD and Why Bring Awareness?

It's that time of year again.  If you follow me on Instagram or FB you will most likely be seeing an increase of posts highlighting a cause important to our family...CHD!

What is CHD?  CHD stands for Congenital Heart Defect.  As defined on the Children's Heart Foundation page, "A CHD means a child is born with an abnormally structured heart and/or large vessels. Such hearts may have incomplete or missing parts, may be put together the wrong way, may have holes between chamber partitions or may have narrow or leaky valves or narrow vessels."

So basically... it is a heart condition you are born with.  1 in110 kids are born with a CHD!

Our precious Stephen was born with a very serious and complex CHD (many of them actually!)

So Why Bring Awareness?

See this face?  This precious boy...I love him more than I can describe to you in words.  He has a special disposition about him.  We have always said that God gave him an "extra dose of joy!"  He smiles constantly, has a laugh that will melt your heart and gives the best squeeze hugs!  He also lives with only half a heart.  Yes...that's right...a half a heart.  

You see Stephen was born with a complex heart condition that currently has NO CURE (I'll dig a little deeper into his specific condition in other post).  His "options" are limited.  Right now there is a 3 stage pallaltive surgery available (2 of which he has had...the 3rd inevitably occurring this summer).  

palliative

: reducing the severity of a disease or condition without curing it
: something that is intended to make a bad situation seem better but that does not really improve the situation

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  As one cardiologist put it "you have 2 suboptimal options at best."  That friends...that is our reality.  That is Stephen's reality.  Sure, he LOOKS fine.  Yes, he LOVES life.  No, he has NO CLUE (nor do his siblings) on the ACTUAL REALITY of his condition.  Honestly, I am pretty sure 90% of our friends/family don't fully understand just how SEVERE it really is.  If I had to take a guess at why I would say most probably don't take the time to process it.  To let the actual reality sink in.  It's too hard to.  It's much easier to look at this precious boy and forget the reality (a coping mechanism I use OFTEN).  But it is a reality we are faced with DAILY.    I am daily reminded of his condition every time I kiss his sweet blue lips or hold his tiny purple fingers.  
  So why awareness?  Because Stephen needs a better option, his heart friends need a better option.  Everyone usually asks "why isn't he on the transplant list?"  Friends, transplants are only palliative too...they don't last forever.  
  What can awareness do?  It starts with awareness.  With people seeing a need.  This face...it's in need.  
  

  

  
  Awareness brings funding, funding brings research, and God willing research will one day bring a cure for this special boy.  
  Let's Start with Awareness. This Friday is National Wear Red day and we would love for you to join us in wearing Red for Stephen and all of his heart hero buddies!  Snap a picture and share it on social media using #CHDawareness #redforstephen  

  

  
  And maybe consider going a step further and by making a $10 donation to The Children's Heart Foundation in honor of our Heart Hero!We started a fundraising campaign on FB that can be accessed here.FB Children's Heart Foundation FundraiserAdd #idonated4stephen and #childrensheartfoundation to your photos!  You can also donate directly to their website Children's Heart Foundation Together we CAN make a DIFFERENCE!  
  
  
  

Happy Heartiversary Sweet Boy!

Yesterday wasn't the first birthday I spent at Rady Children's hospital.  Stephen underwent his first open heart surgery the day after I turned 30...which still takes the cake for my worst birthday ever!

But today marks another milestone for our family.  Today is Stephen's "Heartiversary!"  5 years ago today Stephen underwent his first open heart surgery.  Honestly it was the worst day of my life until Lizzie topped it this summer.   But it is also a huge milestone to celebrate.  At just 10 days old Stephen endured more in one day than I had my entire life.

This morning when I  was talking to him about it he asked if his scar will always be there.  I answered "yes...and it will always show how strong and brave you are!"  He then proceeded to point out each chest tube scar and say "and this one, and this one and this one... 3 more!"

I love sweet this boy!

If you would like to read a little more about what this day means to me you can check out my blog post from his first Heartiversary...

A Year Ago Today

Stephen...he is just excited that he gets ice-cream today!

As for an update...he will also be going in on May 5th for his ECHO.  I was always told he would need his 3rd OHS by the time he was 5...and that time may have come.  My prayer is that we can continue to push it off.  I am praying that his heart is strong and his 02 sats are high enough to avoid surgery this summer.  I am dreading the Fontan surgery for many reasons.  So each appointment we weigh the benefits of the surgery with the risks, and as soon as the benefits outweigh the risks we will move forward.  Please join us in pray for clear guidance and wisdom on when to do so.
Right now I am fine but I will be a small wreck on May 5th.  Any heart mom knows how nerve racking it is to have scans.  Everything can seem so fine on the outside, but the inside can tell a different story.  Please pray for an EXCELLENT report!

Thank you!

And Happy Heartiversary Sweet Boy!!!!  You are so very LOVED!!!

Happy 5th Birthday Buddy!!!

Today my baby turns 5!  I know it is cliche to say this...but how have 5 years gone by!

This little guy brings so much joy to the world and I truly can't imagine my life without him.  God has used his special heart and his story to do beautiful and amazing things for His kingdom and for that I am so grateful.

His birthday always hits me with a ton of mixed emotions.  On one hand I look back and remember the struggles.  I remember how lonely it felt to give birth and then be left alone in a delivery room.  How heartbreaking it was to not be able to hold him, let alone remember what his face even looked liked.  My baby should have been in my arms and on my chest and instead he was on a table with lines and wires being placed in his tiny body.  I was in one hospital, and he was in another.

I couldn't hold him, I couldn't feed him, I could't sleep with him by my side.  It went against every natural instinct and feeling a mother has.  I could't do anything for him but pray.  I remember days later being allowed to change a diaper and I was overjoyed... a task I so many times took for granted. But when I was finally allowed to I jumped at the chance.

This was my baby on the day he was born...

But I also sit here today overjoyed because Stephen's birthday is a day to celebrate!  Today we celebrate his LIFE the amazing BLESSING that he is!

I have said it before but Stephen's life forever changed mine.  His journey made me a better person.  My perspective shifted.  I valued TIME with my kids and husband more than anything.  When you don't know how long you will get with someone you want to soak up every moment.  It changes the way you make decisions, the way you look at life, the way you spend your time and what you make a priority.

His life also opened my eyes to a hurting world.  At first I felt so alone, but soon I saw so many families hurting alongside of me.  Stephen's life opened doors to minister in ways I never imagined.  I am grateful for the families I have met through serving at the Ronald McDonald House.  I have prayed, cheered and cried alongside of so many and I am blessed to know each one of them.

So while today will brings a mixed bag of emotion to this mama's heart, it is mostly full of GRATITUDE and LOVE.   I am so thankful God blessed me with this child!  This kid kills me!  His laugh is adorable, his joy radiant and his smile melts your heart!

I mean... you can't look at him without smiling right back!  

So today we CELEBRATE!!!  

Happy 5th Birthday Stephen Joseph!  I love you with all my heart!  I pray that your joy will never leave you, that you will love the Lord and follow Him all of the days of your life, and that you will know just how special you are!  May God continue to bless you and keep you and make His face to shine upon you and may we celebrate YOU with MANY more birthdays to come!

Stephen's 4th Heartiversary

Today marks 4 years since Stephen's first open heart surgery and for his 4th Heartiversary I wanted to share the post I wrote at his first... 


A year ago today Joe and I woke up and didn't say a word.  Before we left our room at 5:51 in the morning I typed the shortest post ever on this blog "I have no words...please pray".  We hardly slept the night before and wanted to be in Stephen's room extra early.

A year ago today we held Stephen as close as possible.  Joe and I took our turns with him in our arms.  We held him, kissed him and spent time just looking at him trying to soak up every detail from his fingers to his toes.

A year ago today doctors and anesthesiologist came by our little room and explained to us the surgical procedures and all of the potential risks associated with it.  Though we had heard them before, the reality of them sunk in as we signed paper after paper.

A year ago today we got the call from the OR...it was time.  We quietly followed behind our son as the nurses wheeled him through halls and down elevators. 

A year ago today Joe and I had kiss our baby goodbye not knowing if he would return. 

A year ago today we handed over our child.  We had to put our confidence in the surgeon and his team and our hope and trust in God.

A year ago today I had to wait.  I cried and prayed for hours.  I prayed for every person in that operating room and that God's spirit would fill it completely.   I cried at the thought of Stephen lying there still and unaware of what was going on.  I prayed that God would guide the hands of the surgeon and that He would work through him to help our son.  I cried at the thought of what was being done to him and prayed for angels to surround him.  I prayed and cried until I fell asleep in Joe's arms and then I prayed and cried some more.  I prayed that we wouldn't get a call too early...that nothing would go wrong.  I cried at the thought of losing Stephen and prayed to God for his life. 

A year ago today the wait was over.  We received the call that he was out of surgery and that the surgeon would be meeting with us shortly.  We smiled, hugged and anxiously went to the waiting room. 

A year ago today I looked into the eyes of the man that saved my sons life.  The surgery went smoothly and Stephen came out of the OR with his chest closed...almost unheard of.  I was so grateful. He said we weren't in the clear yet and that the next 24 hours would be telling...but that so far everything looked good. 

A year ago today I braced myself as I walked into my sons room not fully knowing what to expect.  On our way in the doctors and nurses said he looked great..."great" looked near death to me. 

A year ago today our son went from this...

                          to this...

A year ago today we felt relief.  We praised God that he was out of surgery and already doing so well. We were physically and emotionally drained.  We felt relieved to be back with him and that the worst was now over.

A year ago today I relied on God in ways I never had to before.  I  understood what it meant that He was my refuge, my fortress and my rock.  I poured my heart out to him and he heard my cries. 

A year ago today was the hardest day of my life. 

It is a hard day to reflect upon because it was so painful.  But today I sit here so grateful and amazed at what a difference a year has made.  A year ago today Stephen was sedated with so many wires, tubes and lines coming out of him...and today...Today he is this bright eyed handsome little boy who is so full of joy and has a smile that lights up a room. 

Today, 4 years later, I sit here just as amazed and grateful for the gift our our sweet Stephen.  4 years ago I would never have imagined this little guy participating in swimming, gymnastics and baseball!!  It is just incredible!  

Yet, today as I reflect on his first OHS I also anticipate the third.  This is the surgery that I dreaded the most, even before he was born.  I knew it would be difficult to hand my baby over...and it was.  But this one will be much different.  We will have to prepare him for it and explain to him what will be happening...how do you even do that?  Imagine "going to sleep" fine and waking up with lines, wires and tubes coming out of you...I can't...I just can't.  

So today on his heartiversary pray with me for guidance and wisdom for Stephen's upcoming surgery.  There is still debate on when it will be (could be as early as this summer) and I just pray for God's wisdom in the timing of it, His mercy and grace in the outcome and His peace and strength for Stephen through it all!  

NICU Reunion

Dr. Lane

Today was special.  I got to introduce Stephen to some of the doctors and nurses that took care of him during his 26 night NICU stay.  These are the men and women who truly saw us through a medical crisis.  They were the ones with us in that small hospital room day in and day out.  They took care of Stephen in ways Joe and I were incapable of and for their expertise I will always be grateful!

Stephen had 4 Neonatologists care for him during his stay and today he got to meet 3 of them!  I can not speak highly enough of this team...they still mean the world to me!  To get to see them again and thank them once more was special.  I know they can't possibly remember every patient...but we will never forget them =)

Dr.Suttner

Dr. Speziale

RN Julie

And seeing nurse Julie was a real treat.  She remembered Stephen...even his room number =)  And this picture just says it all!  The NICU nurses were a huge blessing to me.  We were not allowed to spend the night in the NICU at Rady's so each night I had to leave my baby...it was awful.  But I am so grateful for the amazing nurses who cared for Stephen when I wasn't able to.  The night shift nurses came on at 7pm and left at 7am.  We would usually stay in the room until about 11pm and be back in there before shift change (around 6:30am) to be able to ask how he did before they left.

This team truly meant the world to me.  I wrote a handwritten thank you note to every single nurse and doctor who cared for Stephen during our stay (and even one for the cleaning lady)!  She always made my day.  She would come in the same time each day and ask how he was doing and I would always look forward to her little visits.  Joe and I had very little contact with the outside world during this time and these people became like a family to me.  They were the only other adults we talked with most days and they were the only people in our life who truly knew what we were going through.

So a HUGE thank you to Rady Children's Hospital and the incredible NICU team.  They are all heroes in my book!  I am grateful that they chose these professions and continue to daily bless the lives of so many!

Happy 4th Birthday Stephen!

1 Week Old

4 years ago a beautiful soul entered this world and his life forever changed mine.  It is with sincere gratitude that I look back on these past 4 years and thank the Lord for Stephen's life.  While so many heart heros fail to see their first birthday, Stephen has seen 4 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. 

1 Year Old

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 in our world and how God has done "immeasurably more" than we could have dreamed.  Today we praise God and celebrate the gift of Stephen!   

2 Years Old

Stephen has been extra excited about this birthday and has been counting down the entire month!  As per his request he will be having a baseball birthday party!  This little slugger love all things sports.  He daily plays baseball and hockey inside my house and counts down the hours until his Daddy comes home to join him.  And yet his love for school work still tends to top most gifts!  He was SUPER excited to receive 3 new Star Wars Preschool books this morning and wanted to begin them right away. He makes homeschooling easy! 

3 Years Old

And he is still the most JOYFUL kid I have ever met. These smiles  you see throughout the last four years are daily on his face.  During his swim lesson last week a parent commented on how much he smiles and that as soon as he pops up from the water a smile is already there.  They saw the light shines through him and it just warmed my heart.  It is there and it is so beautiful!  God gave our little guy an extra joyful spirit and the light of Christ shines so brightly from his smile!

I am beyond grateful to be sitting here 4 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. 

Happy Birthday Stephen!!!

My Baby is Turning Four

This coming Sunday, April 17th, Stephen turns 4!  I can only begin to explain how grateful I am for his four years of life.  This little boy daily melts my heart.  I know his life is nothing shy of a miracle and I thank God for each and every day I get with him.  And while I celebrate his birthday with great joy...with it also comes a rush of emotions.

Sometime back I had started a tradition of sharing each our our kiddos birth stories with them on their birthday.  I don't go into specifics on the delivery (they don't even know where babies come from yet) but I share with them and joy and anticipation we felt and the waiting room full of visitors eager to hold them.  And each year on Stephen's birthday my heart breaks a little as I carefully choose my words.  Stephen's story is just so much different than my other 3 kiddos.

Stephen was born into a room full of specialists, and while I was excited to finally meet my precious baby, I was also so worried and scared.  Since each and every baby is different, the doctors were unsure how he would do once he was out of the womb, so they prepared us for multiple scenarios...none of which were ideal to me.  We had special doctors, nurses, respiratory therapists and a transport team in the room with us...11 audience members!

I was warned that I wouldn't be able to see him right away because they would have to immediately begin placing wires and lines on his tiny little body but that I would be able to hold him for a quick kiss and prayer before he was taken to Rady's.  I didn't see my baby's face for 20 minutes...and even then it was from a brief snap shot Joe got on his phone.  My first time "seeing" Stephen was a picture =(  And finally, some time later, this little baby was placed in my arms long enough for Joe to say a quick prayer, and snap another photo, and for me to give him 1 kiss.  He was wheeled away to Rady's in the contraption next to me with his daddy in tow.  I spent the next several hours in a recovery room by myself.  It wasn't that I had no family willing to be there...it was that I needed to grieve not having my baby and husband.  I cried and prayed and waited eagerly to hear from Joe.

I will celebrate with GREAT JOY Stephen's birthday each and every year because his life is so precious and so worth celebrating.  But the memories of his actual birthday hurt.  It hurts to remember how it felt to sit alone in a recovery room without my husband and baby.   To remember the long hours of not knowing how he was doing or what was going on.  When Joe was finally able to call me I cried and asked him to send the picture he had taken because I couldn't even remember what Stephen's face looked like and that broke my heart.  It hurt to see him only hours old and covered in wires as the picture below shows.    

Stephen a few hours old

On Sunday I will tell a much different version to my kiddos... and hopefully with no tears.  I don't want him to know how scary that day was for me...I want him to know how his life forever changed mine.

Stephen's Birthday was scary...but his life has been the biggest blessing and I am looking forward to celebrating the day God gave us this precious little soul to care for and love!