Last Minute Thoughts

This is it.  Tomorrow when I wake up (if I sleep) we will walk right over to the hospital to check our little guy in.  I keep trying to tell myself "It's only the cath lab!"  because Lord knows the open heart surgery will be SO much harder on him recovery wise.  However, with his past complications this doesn't feel like a walk in the park.  So tonight as I cuddled him to sleep, I kissed him extra and prayed over him, because really...that's all I can do now.  It's out of my hands.  Shoot...it was never in my hands!

At times like these I am constantly reminded of Abraham and his unwavering faith and trust in the  Lord as He asked him to sacrifice his only son Isaac.  I know in my heart I need to hold Stephen up to God with my outstretched arms...but I want so badly to just wrap my arms around him and NEVER let go.

So tonight, as I sit here with the thoughts of tomorrow in my head, I am trying to remind myself of the truths I know (and have been reading in a great book on suffering).  That God loves Stephen deeper than Joe and I ever could.  That He has promised to work ALL things out for the good of those who love Him.  That He can take our suffering and transform it into something beautiful.  That He has never left us and will NEVER leave us.  That God loved each of us SO much that He sacrificed His one and only son that whoever believes in Him shall not parish but have eternal life.  That when seen in the light of the risen life no cross, no suffering of any kind, can be ultimately tragic because God WILL bring perfect, absolute and eternal consolation out of every desolation...especially death.    That God WILL one day wipe away our pain and replace it with warmth, love, peace and joy.  That Jesus does't leave us by ourselves to just "figure it out" but that He is ALWAYS present with us.  And PRAISE God for that!

Which means tomorrow Stephen will not be alone in the operating room with the doctors and nurses, but that the God of this universe will be present with him.  And my prayer is that the Holy Spirit would fill that room with His presence.  That a multitude of angels would watch over and protect our precious son.  And that God would use ALL of this for some greater purpose.

I am truly honored to be Stephen's mommy.  My love for this little guy runs deep.  And tonight, as I want to cling to him and hold him tight, I am trying to remember to look to Jesus...because He is my rock and my refuge, an ever-present help in trouble.

Jesus, I trust in you.

Preparing...

How does one spend the week before her son's heart procedure...getting rid of THINGS!  Oh my word, I have been on a roll!  There is little right now in life that I can control, so I am sure this crazy nesting is just my way of trying to control something, but I feel like I have to prepare somehow...and this is just one of those ways!  I have been trying to go through each room in the house to just purge it of STUFF.  The goal of course is to have a clean house...but I went the DEEP CLEAN route!  Which means it will still look messy for a bit...but once it is clean it will feel SO good!

We were actually CRAZY BLESSED to have a friend come over and power wash the outside of our home, clean ALL my windows and re screen my windows (because my cats literally put a hole in EVERY one).  I can't even...walking up to a no spider web entryway is the BEST!  Thank you Moody family...I appreciate you more than words can describe!

As I am attempting to "prepare" for his Cath procedure, I feel like I need to get things in order for the BIG DAY knowing his open heart surgery is sometime right around the corner.  So, I find myself scrambling to get things in order not knowing if he will be going back 2 weeks from now, 4 weeks, 6 weeks...etc.  All I know is that the surgery will happen within 2 months of Monday, and as much as I NEVER want it to happen, I am just ready to have a date and be on the other side of this already.  The anticipation and the thoughts are the hardest and I just want it to be OVER.

As promised, we scheduled this procedure after baseball season so Stephen would not have to miss a game.  So tonight he will get to play in his play off game and tomorrow he will get to be a part of closing day ceremonies and his team party before we venture down to San Diego on Sunday morning.  

But on a light note, I wanted to share a few INCREDIBLE photos our friend, Jeremiah, took of Stephen  playing his favorite sport.  These pictures are SO precious to me.  They perfectly show Stephen in his favorite element and I just LOVE them!

This is my new FAVORITE picture EVER!!!

This boy gives it EVERYTHING to run!  He is so much slower than the other kids...but he is working SO much harder...evidence in his sweet  blue lips!

Catcher is his favorite position right now!

Honestly, I think I will miss his blue lips!  But they should be pink after his OHS!

He may be on the Cubs...but he sports his Angels helmet!

This smile...this is SO Stephen!  Mostly serious on the field, but so excited and giddy too! 

See...aren't those photos INCREDIBLE!!!!  Such a gift!!!

In other news, we got word today that we have a room at the Ronald McDonald House...YAY!  And the hospital called today to confirm Monday...it's happening.  We check into the hospital at 6am on Monday and his procedure should start at 7:30am.  We would really appreciate prayers during that time!

The reality has been tough for me.  I want to just assume everything will be fine but I can't.  I am not naive or ignorant of the inherent dangers and Joe and I will have them ALL read to us again.  And I know that sometimes REALLY faithful people get REALLY hard results.  So please, hold us all in your prayers.  We know God has been at work in Stephen's life since before he was born, and that  irregardless of the outcomes, God will continue to use his special heart for His kingdom.  But prayers for peace, strength, and protection would be greatly appreciated!

Jesus, we trust in you!

2 Weeks Away...and Already a Wreck

2 weeks from today is Stephen's Pre-Fontan Cath Lab...and I can't shake the idea that this could my last 2 weeks with him.  That, in a nut shell, is where I am at emotionally.  I BROKE down to Joe yesterday after church...like ugly, loud sobbing.  I am trying to stay strong but the truth is I am a wreck.  It's hitting me hard right now...and tears are plenty.

I already posted about "The Dreaded Cath"and all of my fears that go with it.  Stephen went into stage 2 heart block the last time (not good) and is prone to have the same outcome again. The fact is, I know all (or most) of the possibilities and I only want 1 of them.  I want the one where he tolerates it all perfectly, wakes up just fine, and in no time he is right back to his
cheerful smiley self.  I want that SO badly it hurts.  But there are no guarantees...and that is killing me.

I love God, I trust in Jesus, and I know the only guarantee I can rely on is the eternal hope that is promised.  And if I dig deep down I know that is enough...that He is enough.  Praise God that I have these truths to rely on because this hope is the one and only thing that gets me through this suffering.

But right now I am weak and can use your prayers.  I knew I would be a wreck before surgery, but I didn't expect to get hit this hard right now.  Prayer warriors...please pray these days leading up to this procedure.  Pray for God's protection over Stephen both physically and emotionally.  Pray for his siblings who are already sad that we will be apart.  Pray for Joe and I to handle this the best we can.  It is so hard hiding these tears...but I do my best!   I know we are surrounded by prayer, and I am so grateful for it!

The Glenn Surgery

Stephen's 2nd OHS, the Glenn Operation, took place when he was 4 months old.  

During the Glenn Operation, the BT shunt placed during the prior Norwood procedure was removed, and the superior vena cava  (the large vein that brings oxygen-poor blood from the head and arms back to the heart) was connected to the right pulmonary artery.  Blood from his head and arms now passively flows into the pulmonary artery and proceeds to the lungs (bypassing the heart) to receive oxygen. 

However, this still leaves Stephen with oxygen-poor (blue) blood returning to the heart from the lower body through the inferior vena cava.  It mixes with oxygen-rich (red) blood in the left heart and then travels to the body, which is why Stephen remains cyanotic.

So to recap in pictures...this is what stephen heart mostly looked like at birth compared to a normal heart

And this is (mostly) what it is now...

Notice how the pulmonary artery (PA...the horizontal blue one) was detached during the first surgery and patched on to the aorta to make it larger?!   The Glenn basically divided the SVC (Superior Vena Cava) and connected it to the PA to divert that blood directly to his lungs before entering his heart.

Remember, in our bodies the blood that needs oxygen flows into our right side of the heart, then into the lungs, back into our left side of the heart and finally gets pumped out to the body.  With Stephen's "plumbing" the blood on his top half passively flows in to the lungs (bypassing the heart) to get oxygen and then returns to the left side to be pumped out.  However, all oxygen poor blood currently returning from his bottom half just goes into his heart (skips the lungs) and mixes with the blood returning from the top half that received oxygen, and just gets pumped back out.  

This, this is why his lips are so darn purple and his fingers are so blue!  At rest his pulse ox rate is 80 (at best) but when he is running it dips into the low 60's!

This surgery was in some ways harder, and some ways easier than the first.  The easier part was knowing that it was not as risky of a procedure as the Norwood.  When meeting with the surgeon before hand he made it sound simple.  He said something like "the actual surgery is a piece of cake.  I just cut one vein and attach it to another.  The hardest part is getting in there through all of the scar tissue."  

Ughhh, and that is when it hits you.  What they have to do to my poor baby to fix him...they first have to break him.  I know it is to save his life...but I hate it.

Handing your ten day old baby to a surgical nurse was hard.  He was so sweet, so innocent, so small.  It was no easier the second time around...it was even harder.  Since he was much more alert (and a bit older) Joe was able to go into the OR with him as they put him under with gas.  I am so grateful that he was strong enough to be there for him.  Only one of us could go, and there is just no way I wanted a memory of that room and that table knowing what was about to occur.  This next time around will be even harder.  It will be the first surgery he will remember, the first surgery will will have to prep him for and explain...where do you even begin?  This is one reason I am SO grateful for the heart community and the many amazing moms who have walked the road before me...I will ask (and have asked) a lot of questions!  

All in all the Glenn surgery went VERY well and his recovery was speedy and uneventful!  We spent only 6 nights in the hospital!  Chest tubes, lines, and wires came out quickly.  (Fun fact...one of his pacemaker wires was sewn in a little too tight and therefore not able to come out.  So it will actually be detached during his next surgery.  This has kept him from being able to get MRI's!)  

But this is OHS...this is CHD.  These are the poles, monitors, lines, wires, tubes, etc the come along with it.  This time around he only had 2 chest tubes.  The other wires going out are the pacemaker wires mentioned above.  

But THIS...this is how strong these heart warriors are!!!  Stephen was smiling the NEXT day!

 These kiddos are SO much stronger than their parents...for real!

I love this!  He hated the nasal cannula..and basically decided he was done with the oxygen!

He won...cannula gone!

As soon as we got the clear...he spent every minute he could in our arms!
He just came attached to a pole..and lots of wires!

Joe's smile...enough said.  I love these two so much!

He rocked the Glenn surgery...and he did it with smiles!

First day home...still healing from OHS like it was no big deal.  

And while going home so soon was AMAZING...it actually didn't feel right.  He was very much so still healing, and it freaked me out a bit to be "on our own."   The recovery at home was rough.  The Glenn is known to cause headaches...the Glenn Headaches as they are known in the heart world.  His body is suddenly plumbed completely differently and his body has to adjust to the new circulation and new pressure.  Basically...he went from sleeping 6 hours straight through the night to waking up every 5-10 minutes every hour through the night SCREAMING.  Yes...we got NO sleep.  I remember thinking if I just get 1 hour straight of sleep I will be freaking super woman.  I can honestly say I do not remember how long it lasted (though if I look through old blog posts the answer is probably there).  I just know it was MONTHS.  

The poor guy!  I remember thinking most babies cry and you think "poor baby...your life is so hard.  You eat, sleep, and poop."  But in Stephen's case...his life was so hard!  I felt awful that I couldn't take the pain away, and praise God it didn't last forever...and the days were still filled with smiles!  

This my friends is a little glimpse into Stephen's journey, into our journey.  I will hopefully tackle another post soon explaining the 3rd surgery to come.  Its positives and its negatives and why I have dreaded it since before he was born!  But first,  thank you for walking this journey with us.  So many of you have faithfully prayed for our sweet Stephen and we cannot thank you enough for doing so.  We are stronger because of you!  

The Dreaded Cath Lab

A smile exchanged with Daddy during
recovery from his cath lab procedure

Stephen's rocked his 2nd OHS at 4 months old.

However, before we get to that, we are going talk CATH LAB.  I dread these words.

Before Stephen was able to "qualify" for the surgery he had to undergo a cath lab (cardiac catheterization) procedure to check his pressures.  They basically stick a tiny catheter into a blood vessel through his groin and thread it to the heart.  During this procedure Stephen went into stage 2 heart block...not good.  While we didn't hear about it until after they "fixed" it, it was not the news we were hoping to get.  I share this with you to better understand my fears come May...when he again has to go to the dreaded cath lab.  Stephen is at a greater risk of recurring heart block, and has a greater chance he will eventually need a pace maker inserted in the future.  It is one of the many CHD slaps in the face that we have felt.  The reality is he could be fine, the procedure could go well and we could potentially go home the next day.  Or he could go into heart block again...and it could be worse.  Those are the blows that CHD throws at you.  There are NEVER guarantees...never.   They can never say he WILL be fine.  They can never say he WILL come back.  They can NEVER say the words that you want to hear...that you NEED to hear.  Instead...instead you sign papers.  Scary papers with scary words.  Instead you are told everything that can go wrong...EVERYTHING.  And then...and then you have to hand them over anyways.

He had to lay still on his back for 2 hours after
the procedure, not an easy task for a
3 month old who wants to be held!
But, he still smiled!

The REALITY...nothing is ever a "simple" procedure when you have such a severe heart defect.  Anytime these kiddos undergo anesthesia they are always at a greater risk than a "normal" child.  And the fact is, not all kids make it out.  I know...that's morbid  and yes it is more "rare" but it is also a reality.  A reality many parents in our heart community have faced and one that I can't just shake off.  Anytime Stephen under goes a procedure will always be a HUGE risk.  Percentages have come to mean far less to me after his diagnosis.  When your child constantly falls in the "less than 1%" category hearing that 99% of kids are fine just doesn't matter.


So one thing you can begin praying for is his safety and protection through the Cath procedure.  It is going to be painful for me to sign off on this.  During his last cardiology appointment in December I agreed to go through with it in May, but I told the cardiologist I wouldn't call to schedule...they had better call me.  I can't do it.  I can't bring myself to dial the number to do it.  It is just easier when they call.  That was the plan.  I didn't like the plan...I just excepted the plan.  Now, the plan has changed.  We have new insurance, we need new doctors, and I have to initiate everything.  I have to tell the doctor he is supposed to have surgery this summer...I have to request it really.  I don't know if I should laugh or cry...probably both!

So pray for this mamas heart.  It is already crumbling.  I am not trying to be overdramatic...though I am good at it.  I am just giving you a glimpse into me.  My life, my worries, my fears, my heart.  I want to be strong for him, but I know I can't do it on my own.  Praise God that his strength is made perfect in my weakness...because I am weak.  But I know He loves me.  He loves me deeply.  He created me, He knows me, He cares for me, He sees me.  I serve a God that not only understands, but goes before me.  That, that is my comfort.  That is where my hope comes from and where my strength is found.  And that same love He has for me, He has for Stephen.  So I choose to TRUST that good will continue to come from all of this.  That God will transform our suffering through faith.  That He will not let it go to waste, but that He will use it for His kingdom.  "The highest good God can bring out of our suffering is our own and others' salvation."

Fittingly, I write this on the first day of Lent.  A time to reflect on Christ and his sacrifices and suffering for our salvation.  A time to stop and put things back into perceptive.  I am grateful for this time.  I need this time.  The resurrection provides the very context through which Christians suffer.

Lastly, I want to share a quote with you on this...

"Belief in Jesus' promise to remove and redeem all suffering--and bring us into a domain of perfect love and joy is essential to the Christian experience of 'suffering well'.  When we affirm this truth, suffering can no longer be ultimately tragic.  Yes, it can produce terrible pain, grief, loneliness, emptiness, fear, and frustration but these negative states are only temporary if we believe in the resurrection and put the redemption of our suffering into the hands of the loving God."

Ok....one more quote.  Because I want you to understand that yes...my heart fails.  Yes, my life can be hard, but this...this is what I cling to!  And in preparation for what is enviable I have been reading more on suffering, and suffering well.

"For Jesus and the loving father, suffering and death are punctuated realities that incite us to choose who we are and who we will become-necessary moments in the process of self-definition, our ultimate dignity.  Since they are temporary, there can be tragedy, but no ultimate tragedy; grief, but no ultimate grief; weakness, anxiety, and pain, but no ultimate weakness, anxiety and pain; sadness, but no ultimate sadness--no despair.  Therefore, suffering and death are transcended by love, joy, and life--the only real absolutes--in the Kingdom of God."

God Bless!

Stephen's First Surgery

It always takes me longer to write a post like this...or really to even start to write a post like this.  I have to have the mental capacity and the emotional capability to even begin typing and processing.

But I want to share (in 3 parts) the procedures that Stephen has had and will have.

Stephen's first open heart surgery (OHS) took place on April 26, 2012.  He was only 10 days old.

The procedure was called a Norwood BT Shunt and it is one of the highest risk procedures in congenital heart surgery.  

For Stephen it involved reconstructing the aorta using the pulmonary artery, to allow the ventricle to easily pump blood out to the body and then placing a Blalock-Taussig shunt (which was about 3.5mm) to maintain blood flow to the lungs.  They literally patched his aorta with his pulmonary artery...and his heart was only the size of a walnut when they did this.  Incredible...truly incredible.  

This surgery comes with great risks and Stephen had a huge team both in and out of the operating room.  For the first day or so after the surgery he had 2 cardiac nurses caring for him at all times.  Most babies actually come back from surgery with their chest still open (which we were fully expecting).  When we met the surgeon shortly after and he mentioned his chest was closed I questioned him!  It was a good thing, a very good thing, but was also so unexpected.

I remember being prepped before we saw him.  The nurses had mentioned all of the lines and tubes and what we would see.  But they said that he looked amazing.  This was my sweet boy before the surgery...

And this is what "amazing" looked like...

Seeing these pictures is never easy for me.  Tears are flowing now.  10 days old.  He should have been in my arms with his head on my chest and his precious bum sticking in the air.  I should have been smelling that infant scent and kissing his soft cheeks.  Instead, he was fighting a battle...a big battle.

It killed Joe and I knowing that he had to go through this in order to save his life.  It was heart wrenching handing him over.  I just broke down and balled as they wheeled him away.  We would have done just about anything to take this burden from him.  

Praise God Stephen not only survived this procedure, but thrived.  We praised Him for every small step forward.  We praised Him for every line that as removed, every tube that came out, every medicine that was weaned.  We knew that each step would bring us closer to going him.  

This was the day the ventilator was removed and we got to see his precious eyes again!

Here his chest tubes, pace maker wires and central lines were all gone.

And finally with the help of the nurses he was able to be in our arms again!

And eventually the kiddos were able to visit!  

And finally...I got to see his face with out any tubes!!!!

And the BEST day was holding him in our arms...with NO wires!  We were busting out of the hospital.  Any mom or dad who has had a kiddo hooked up knows how INCREDIBLE it feels to hold them...just them.  No lines to move or wires to bundle.  No poles to drag around...just your baby!  

After 28 nights we made it home!

We were thrilled...and terrified!  After the initial Norwood operation, the heart is fragile and the flow of oxygen to the lungs is completely dependent on the BT shunt.  A failure of the shunt is fatal.  So time in between his 1st and 2nd OHS was a pretty scary time.  He had a nurse visit him 3 times a week and we were basically told to stay home and not let anyone else hold him.  BUT we were home.  

This was the first time I experienced God in a way that I never had before.  The first time I had to truly rely on Him.  It was the first time I felt completely out of control, completely dependent, completely terrified, yet completely loved.  I felt His presence.  I knew He was there.  I knew we may not get the outcome we wanted...but I never felt alone.  His mercy and love sustained us then and they sustain us now.  

I delayed writing this post and seeing these pictures because in a few short months we will be in this position again...and I still just can't go there...  

So today, today I will be grateful for this sweet boy.  For his love of life, his love of baseball, his incredible smile, his adorable laugh and his big squeeze hugs!  He is my HERO!!!

Stephen's Diagnosis

Continuing to Shine the Light on CHD

Stephen was born with a life-threatening Congenital Heart Defect called 

Double Inlet Left Ventricle (DILV)

What is double inlet left ventricle?

Double inlet left ventricle is a congenital defect (the baby is born with it) in which the left and right atria (plural for atrium) of the heart are connected to the same ventricle (the left ventricle) leaving the right ventricle hypoplastic (small).

The human heart has four chambers: the left atrium and right atrium (plural: atria) at the top, and the left and right ventricles on the bottom. Blood circulates through the atria and the ventricles to and from the rest of the body via arteries (which carry blood away from the heart) and veins (which carry blood to the heart).

In a normal heart, blood that needs oxygen enters the right atrium and right ventricle of the heart through the vena cavas. From there, it travels to the lungs via the pulmonary artery to pick up oxygen. 

Blood that has picked up oxygen from the lungs comes into the left atrium. From there, it goes into the left ventricle. The left ventricle pumps this oxygenated blood through the aorta to the rest of the body.

Babies with double inlet left ventricle have an intact left ventricle (the pumping chamber of the heart that pumps blood to the body) and a small right ventricle (the pumping chamber that pumps blood to the lungs). Both atria supply blood to the left ventricle. As a result, oxygen-rich blood and oxygen-poor blood are combined. This mixture of blood flows to the baby’s lungs and body. 

Along with DILV Stephen has...

Ventricular Septical Defect (VDS) A hole between the 2 ventricles

Hypoplastic Right Ventricle (HRV) A small, unusable right ventricle

Levo-Transposition of the Great Arteries  (L-TGA):  The pulmonary and aorta are transposed as well as the right ventricle and left ventricle (his anatomical right ventricle is on the left side of his heart, and his left is on his right side.)  This actually made his first diagnosis Hypoplastic Left Heart Syndrome (HLHS) since it looked as if the left side of his heart was small.  It was after my first fetal echocardiogram that the cardiologist at Rady's gave the correct diagnosis.  I remember him coming in and asking what we thought he had....we said HLHS.  He said..."Well it's even more complicated than that." Of course it was!

Coarctation of the aorta (CoA): A narrowing of the Aorta.  (Not all DILV patients have this...Stephen does.  It is not shown in diagram below..because they don't have a diagram with Stephen's full condition.  This CoA contributed to his need of a more risky first open heart surgery.) 

This diagram below is closest I can find to Stephen's heart...though each child's heart is truly unique!

It is a miracle he is alive isn't it!  There is still no known cause of these single ventricle defects, though the whole process of growing a human is pretty miraculous!  The heart forms at just 6 weeks and when Stephen's did things didn't go according to God's design for the human heart.  Doctors have come up with a set of 3 palliative surgeries to gives babies like Stephen a shot at life...and for that we are grateful.  

I will later cover each of the 3 surgeries...it is truly incredible what they did.  While he looks like a pretty normal kiddo on the outside...he is "plumbed" completely differently on the inside!  But these surgeries are not enough.  They unfortunately don't last forever and cause other potential life-threatening problems.  That is why I am so passionate about advocacy, awareness, funding and research...because one day I pray that there is even more hope for these precious babies here on earth.

*most information on DILV was pulled from Cleveland Clinic