I just want to be Mommy.

“So, Ms Hounsel, let’s discuss what we are going to do for Evan.”

Our specialist for Evan’s gut rattled off our plan.  I agreed to some and disagreed with others.

We came to a happy medium of what was next for Evan in regards to his stomach issues and his lack of weight gain.

I asked more questions about the drugs – interactions, side effects – efficacy.  The normal stuff.

After an hour long visit, his doctor looks at me and confidently says, “Ok. I think we have a good plan.  Let’s see how things go this month and follow up with us in August.  I trust if anything happens you will call me.  Evan has a doctor by him 24 hours a day!”

He chuckled as he said the last part.

The blank look on my face prompted him to add, “You. You are the doctor!”  And he laughed again.

My stomach sank and I battled back tears.

I smiled in hopes that I masked the sadness on my face and the one thought that popped into my mind, 

“Mommy.  I just want to be mommy.”

Having a child that is medically complex is exhausting.

It drains me in ways I didn’t realize.

I have been forced to learn things I never wanted to learn about: heart defects, stomach and intestinal defects, drug interactions, hospital policies…the list can go on and on.

I have become doctor, nurse, therapist, pharmacist, advocate, medical billing manger, accountant…all for the sake of my son.

And, I joyfully take on the role. Because joy is something that is deeper than happiness…it’s an almost transcendent feeling.

Because sometimes….I need something deeper to explain the elation I get in knowing that I am all these because my son is still alive.  The alternative to not being these things in the complex medical condition world means I am no longer all those things because I no longer have to be.

But, there are many moments in my day where I just want to be mommy.

Where I want to feed my child a meal and not have to count calories.

Where I give him a bath and not inspect every scar for infection.

Where I giggle and laugh and rough house with my toddler terror and have to stop and make sure his lips aren’t turning blue.

Where I take him to parks and playgrounds and not have to wipe down swings and slides and hand rails because he is immune compromised.

Where I can plan a date night for my husband and I and just call my sitter and not have to make sure she feels comfortable with feeding tubes, his medication, his tendency to vomit at a moment’s notice.

Where I hold my child and just love on him instead of going to his hands and feet and seeing if they are cold….wondering if his circulation is ok.

Where my daughter’s nightly prayers are innocent instead of worrisome, “God…please heal my brother’s throat so he can eat again like a normal kid.  Please keep his heart strong so that he doesn’t have to go back to the hospital.”

Mommy.

I just want to be mommy and forget that I have these hats that I have to wear.

It’s hardened my heart and jaded me as a person.

I have to stop myself mid eye roll when I hear or read about other people and their “simple” problems – ear infections, fevers, teething, minor surgery.

I stop myself because once upon a time I was “just” mommy.

And those things that are devastating to parents – the things that are trivial to me now – are hard on those who don’t have to wear the hats I have to wear.

I’ve become jaded and hard because I have to be.  My role as “mommy” shifted into protector when I found out about Evan.

For whatever reason, I was given this child that requires me to be more.

I’m required to be more than just the kisser of boo boos…I have to find ways to stop them.

I have to be able to step back and admit that “Mommy can’t make it all better.”

Because, I’m not just that.

I have to be more.

But sometimes…

I just want to be Mommy.

 

It’s written.

It’s been a while since I’ve blogged.

Life has changed and stayed the same all at once.

If you followed Evan’s story on Facebook – you know that he had a successful surgery followed by a very difficult recovery.

There were moments during recovery that I wasn’t sure.

I wasn’t sure what would happen.

I wasn’t sure if I’d return home with him.

I wasn’t sure of so much.

But, we persevered – mainly because we had no choice but do so.

Now that we are back home and I’ve had a chance to breathe – between the piles of laundry, the bills piling up, the every days of life getting tended to – I’ve had a chance to really reflect on what just happened.

We left Boston with my son who had massive open heart surgery.  Without a shadow of a doubt – one of the most complex, intricate plumbing projects of all times.

Walls of his heart replaced, vessels re-routed, his heart and body took a hit.

But, we walked out of the city with a boy who defied the odds.

While we were in Boston and even now, I get many messages, emails, calls, text…you name it…about how inspiring our family and Evan is.  How in awe they are of us.  How amazing many of you think we are.

I get uncomfortable when I hear those kind words.

I don’t really know how to reply.

Often, I just smile and graciously say, “Thank you.”

I couldn’t figure out why it made me so uncomfortable until yesterday when I was reading Iz her bed time story.

I am a super story teller.  I do the voices really well and my hand gestures and facial expressions are truly Oscar worthy.

The book ended and Iz said, “Mama – that was such a great story.  You did a good job.”

And then I had to correct her, “No honey.  I didn’t write the book. The author did…I just told the story.”

It hit me.

When people give me compliments about how inspiring they think we are, how amazing our journey has been…I realize that I can’t take the compliment because it’s not a story I wrote…

I’m just telling it.

It’s already written.

It’s written.

Every moment of heartache all of you prayed us through.

Every joyful moment you cried tears of joy with my family from across the nation.

Every leap of faith we took in moving forward for Evan…

Has already been written.

This is God’s story for my family.

I don’t know how we got so lucky that Evan is ours and we get to tell his story of strength and fight.

I don’t know how we got so lucky that Craig and I have recorded years and years of high school sweetheartness that has resulted in the birth of a family who has endured quite a few trials.

I don’t now why we have been blessed to have so many happy endings to the different chapters of our life that have seamlessly gone to the next.

We have had heartache.

We have had disappointment.

We have had triumph.

Just like every story…we have had all of those.

It’s beautiful.

And telling my (our) story has been something I can’t get enough of.

Because, it’s not about the success of the surgery or how my family got through it or how Evan is now thriving…it’s about how God has been glorified through it.

The good parts aren’t when I shared Evan’s surgery was done or even when we were reunited back home as a family of four.

The good parts are when I was in the pit and all of you cried out to Heaven for my son.

The good parts are when I found joy in the little, mundane things like sitting up again, taking a sip of something, opening his eyes…those little things being the precious gifts from God himself.

The good parts are when so many of you became the hands and feet of Christ and carried my family through this trial.

The best thing about our stories – all of our stories – is that you know that something exciting will happen.  Something difficult will happen.  Something joyful will happen.

There will be heartache but it will lead to redemption.

There will be trial but it will lead to triumph.

There will be sadness but it will result in joy.

It’s the essence of how excellent stories are written.

And we get the privilege of having the greatest Author of all time writing ours…

It’s written…our stories…they are written.

We just get to share them.

Share your story proudly…with emotion, with pride, with excitement…just as I do ours.

I can’t wait to see what happens next.evan boston

Open your eyes.

Evan,

Last night I couldn’t sleep in our hotel room.

I picked you up out of your crib and made a pillow a wall on my bed. I got your blankies and put them all round your head just like you like it.

I lay with  you and watched you sleep for hours.

I don’t think I could ever tire of you, son. Ever.

Tomorrow is a big day for you.

As I wake you up – in your footie jammies, messed up hair, and sweet puffy lips from sleep – you will give me your smile that I love so much and greet me with, “Mama!”

Sweet boy. I’m sorry about what we are about to put you through.

I’m so sorry that you are going to wake up happy one day and in the days following wake up in so much pain.

I’m so sorry for what you are going to go through. I promise you – if I could take your spot – I would – in a heartbeat. I’d do it a million times over…over and over again.

But, baby, the most important thing though, is that you wake up.

You open your eyes and you look for mama.

You open your eyes and you’ll see me. I promise I will not leave your side until I see your perfect eyes open. I promise I will not leave your side until I hear you cry out, “Mama” again.

The pain you will experience physically, son, I promise you my aching heart is matching. Even in this moment.

But, you open your eyes.

You open your eyes and you find me.

You open your eyes and I will tell you how strong you are, how brave you are, how important it is that you stay with us.

You open your eyes and you’ll see Daddy waiting to see his “baseball watching buddy.”

You open your eyes and I’ll show you pictures of sister that will get to see you when you are feeling better.

You just open your eyes and I will remind you of what to fight for.

I’ll remind you that we still have first days of school. We still have trips to the beach so you can play in the water and splash and laught.

We still have t-ball.

We still have arguments over cleaning your room, making your bed, picking up your toys.

We still have Christmas mornings where sister and you wake Daddy and I up when the moon is still out.

We still have first crushes.

We still have projects for school that you “forgot to do.”

We still have “Mom – you are so lame!” for you to yell at me.

We still have first dates. First loves.

We havea life time son.

We have a life to live and many years to live them.

I promise you this….we will live out our lives together. Full.  Long.

I just need you to open your eyes.

And see that your life is waiting for you.

I will see you soon, my best boy.

With everything I am…I love you,

Mama

 

 

A picture is worth a thousand prayers.

prayer

I have sat down at this computer many times in the past few days to give my list of prayer requests.  I couldn’t figure out an adequate way to convey my heart to you.

My desperate heart.

My pleading heart.

My mother’s heart.

And as I was clearing out my camera, I realized…you need to see what to pray for.

I need you to see why our hearts, voices, and prayers must storm the heavens.

I need you to get glimpse of the everyday…that I want and pray for the rest of the days of my life.

Prayer request in pictures

Evan's Heart

Evan’s planned repair and what to pray for specifically:

Possible complications and things to pray FOR and against:

1 – Pray FOR perfect balance between the right and left sides of this ventricles.  

2  –  PRAY FOR enough tissue to septate the common valve to create  the tricuspid and mitral valves, pray for low pressures in the chambers, pray for NO leaks in the both valves

3 – pray that the correct size of the conduit allows for adequate (not too much, not too little) blood flow to the lungs – pray AGAINST clotting in this valve

4 – pray FOR good connection to the left side of the heart and no leaks where the aorta is sutured to the left ventricle.

5 – Pray for no complications when he disconnects this circuit.

6 – Pray for stress to leave the liver.

7 – pray that septation of the heart will be adequate in where the veins will go. Pray AGAINST the surgeon having to move the veins.

8a, 8b – pray that the surgeon does not disturb the electrical pathway of the heart.  Pray for a regular, sinus rhythm.  Pray AGAINST arrhythmias.

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 Pray for this room full of toys and full of everything that is good about childhood to stay filled with laughter.  Pray for more messy days, Lego assaults on barefoot feed, noise of toys getting banged, toys getting thrown, fighting amongst brother and sister for the toy that “was just put down.”

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 Once upon a time, I envisioned my kitchen to have beautiful china, matching glassware, and wine and cocktail glasses for every occasion.  Pray that this cabinet stays just as it is.  Pray that this cabinet full of every sippy cup known to man for my boy who only just a year ago learned to drink and eat that he is fully protected to keep his love for eating and drinking.  Pray that my once upon a time….is now my happily ever after with the addition of the real cups and glasses that make this life worth living.

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Pray for our Chick Fil A Friday tradition with cousins, Oreos with Lola, cereal and sausage mornings with Tatay and Nana, Sunday dinners at Abuelo and Abuela’s house.  Because, your prayers don’t just affect my little family of four…you are interceding for many hearts that are intertwined with ours.

 

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Pray for more fights and more hugs and more kisses and more love between a little girl that has had to grow up too fast and sacrifice too much. But, she does it because she loves her “little dude.”  Pray for the Halloween she has already planned – her as Elsa and Evan and as Olaf.  Pray for the “construction site” birthday she has decided will be perfect for her 3 year old brother.  Pray for the Christmas dream she had with a bouncy house, pool combo waiting for her and brother on Christmas morning.  Pray for every trip she has planned for our family of four – to the beach, back to Disney World (because Evan needs to see Belle’s cottage!), to Hawaii to meet Lilo and Stitch.  Pray for the one thing she keeps saying to us over and over again, “Mama – when you and Evan come back and his heart is all fixed we will be together again….”

Pray for that.

 

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Pray for baseball in the yard between these two. Pray for the first “guy’s trip” to watch the Ranger’s play.  Pray for soccer watching at 6 am on Saturday. Pray for the moment my best guys see Arsenal play across pond.  Pray for football Sundays while the boys watch the game and the girls do some shopping.  Pray for uncomfortable conversations about girls, crushes, and the rites of passage when a boy becomes a man.

 

IMG_0175 prayer2

Heavenly Father – my heart cries out to you.

 I know you have given me Evan because you felt like I was the best mother for him.  Can I tell you something?  God, Evan is the best child for me.  He makes me better.  He has shown me things about faith, love and hope that I never knew possible.

As we walk into the fire once again, I pray that through this time of trial you use it to refine my heart.  I pray you show your miracles as only you can do.  I pray for your healing power to be shown through the hands of the surgeon and through his  recovery. I pray you give the surgeons, the doctors, the nurses, his entire care team knowledge to handle any complications quickly and swiftly but always with You guiding each step.

I pray for Evan’s body to adjust to his new circulation so much that his heart beats strong from the moment he is off of bypass until the day he breathes his last breath surrounded by his children and grandchildren.  I pray you breathe life into his lungs with each motion of the ventilator.  I pray his lungs are strong and he breathes on his own quickly because You say he is ready.

I pray for protection over his organs, his liver, his kidneys, and his brain.  I pray for a blanket of protection over his entire body.  I pray for pee!  I pray for poop!  I pray he knows to open his eyes because he hears my voice, wants to see my face, wants to hit me because he’s angry…and I won’t even put him in time out for that.

I pray for protection against infection.  I pray that your protection reaches down into each microscopic cell of his body and that your Angels are fighting for him and with him against anything that can cause him to have complications.

I pray against any bleeding or clotting problems during surgery and in recovery.

I pray for the hearts of those that love him so much.  I pray for Craig, Iz, our families. I pray for my mother’s heart to step aside and allow my heart for you – a daughter’s heart – see and feel comfort in a Father that will make it all better.

I pray for miracles God.  I will never stop asking.  I will never stop believing that You can and will provide all that we need as we need it.

I’m so thankful you brought us to this day for your glory to be shown once again in the tiny, warrior heart that is my boy.

Prayer warriors….let’s get ready to move mountains.

Dear wife,

It’s Valentine’s Day.

Craig and I don’t celebrate this holiday.

We used to…our first one was a disaster.  He didn’t really understand that romance was not found in a little Mexican restaurant that shared the same parking lot as the Super Walmart.  (Anyone remember Floresitas?)

So, we decided to give up the holiday.

But, my Iz loves it.  She loves the heart, loves the chocolate, loves the card making…all of it.

So, we celebrate it again. We mainly just make cards for each other and eat lots of chocolate – brownies, candy, cake – winning!

Today, though, as I sit in the kitchen and Dora is in one room and Sophie the First in the other, a pile of laundry piled high in the bedroom, toys everywhere…I realize there isn’t much more that could possibly shout “love” than a house that is full of life of the everyday.

I look in on Evan…and that tightening of my chest as anxiety rushes up hits me again.  Surgery is in 10 days.  And the feeling is suffocating.

I have done something different lately….probably something I should have been doing from the get go…I pray for something specifically over Evan when that worry hits.

My boy is sitting happily with his blankies on the floor, trying to put together his Legos, and watching his beloved “Dora” for the umpteenth time.

My tears rise up…but not today.

Today…I pray for love…today I pray big for my son.

Dear future Wife,

You are going to do something incredibly special today.  Today you are going to join a covenant with my son.

Today you are going to promise to love him, honor him, forsake all others.

Today you are going to promise to stand by him for richer and for poorer.

Today you are going to promise to stand by him in sickness and in health.

I have prayed for you since Evan was a baby.  I have prayed for this day because this day means that the surgeries he endured worked.

I prayed for you because that means he found someone that loves him unconditionally.

I prayed for you because you saw past his scars on his face and his chest and saw the unblemished, bit of perfection God blessed this life with.

I prayed for you because you know about his very special heart and all that he (we) endured and still want to promise “through sickness and in health.”

I prayed for you because you are going to experience love with a person that is brave.  That is strong. That knows what it is like to battle through adversity and come out the other side better than whatever tried to take him down.

I prayed for you because you encompass every prayer I ever prayed over him.

For his health.

For his spirit.

For his life.

There were many moments in his life that I didn’t know if we would get to this day.

There were moments where time stood still – I was paralyzed in fear, in worry, in the unknowns of his journey.

But, today…time will stand still.  It will stand still for a moment as I watch his face when he sees you – his beautiful bride – march down the aisle.

It will stand still has I watch the both of you exchange your vows…in front of people that have prayed for this day, too and with a God that has beautifully orchestrated every moment.

It will stand still because I don’t want to miss a moment of this day that will bring us full circle to every prayer that has been showered over “our” best guy.

I hope today, you know, how important you are.  How much you are loved.  How you have been prayed for and will continue to be prayed for.

You and Evan chose each other.

You made the choice to look past each flaw, each shortcoming.

You will make that choice every day for the rest of your lives.

Today, begins a new journey for him.

I took care of his heart and will continue to be here for him and for you if you need me.

But today, I am so happy that you are taking the heart that I cared for for all these years….and taking it into your own.

My love, 

Czarina (you can call me mom)

 

 

 

Don’t let it take anymore.

Yesterday was a difficult day in the Heartland.

Many hearts were broken as we lost one of “our boys” to CHD.

The thing about being in this world of broken hearts is that you form a bond with other mother and parents going through similar journeys.

So, when one of the tiny fighters loses his battle, it shakes the whole community.

We mourn with the mother whose heart is broken and arms are empty.

We mourn with the father whose dreams for his son are shattered in an instance.

We mourn for the family and friends that love(d) that little one.

We mourn for each other as a sisterhood of broken spirits – knowing all too well that the prayer we speak over our children after a devastating loss is, “Please spare my child.”

When I woke up and saw the news of the passing of a tow headed little boy I loved from afar, I didn’t shed a single tear.

I had cried my share the night before as I hit my knees in prayer asking – begging – for a miracle.

My sadness, worry, and fear for him and his parents who felt helpless as doctors and nurses “worked” on their child  was suddenly replaced with an emotion I didn’t expect.

Anger.

I was angry that a little boy who fought so hard was taken from this world all too quickly.

I was angry for his parents who had moved mountains for his care felt trapped.

I was angry that the story that transpired from a mom who took her son to the emergency room for a cough turned a mother who would leave without her child.

I was angry that the simplest of things that normal, healthy hearts encounter caused this much devastation.

I was angry and saddened that the strongest of the strong in the Heartland – the women who hold me up and are the leaders in this community – confessed of “cracking,” breaking, helpless.

I was angry that every fear and worry for my own child I had buried had suddenly resurfaced and put me in a strong hold.  Holding me against my will to the land of hope.

I was angry that the doubts for the path I chose for Evan suddenly became a beast once again…after I had tackled it him head on and defeated it.

I was angry that people who don’t know him will just be saddened by his death…but won’t speak up further for his legacy…won’t advocate just witness…refuse to empathize rather just sympathize.

I was angry that the helplessness that I feel in times like this is everything I have been fighting against.

My angry heart mourned with the Heartland and it aches for my friend.

Anger, though, is a powerful emotion.

It is primal.  Raw.

It stirs up deep emotions that can drive one to do things…change things.

My anger passed but I let it feed my hope.

I didn’t let it take it.

I didn’t let the anger take the one thing that gives this community the strong heart for change for the tiniest broken hearts we love.

While the devastation of losing a child in the Heartland shakes us to the core, I never want to forget every emotion I felt the moment I find out another one has earned his Angel wings.

Those faces that I have grown to love –  Baby Ben, Hayden, Rowan, and Finley – cannot be forgotten in the anger that we feel.

Those faces have to be reminders that hope is still possible.

Hope that their lives will be reminders to others to cherish every moment.

Hope that health is to not be taken for granted.

Hope that the mountains they moved for their children for their medical care will be an example to others.

Hope in the midst of the grief we still find joy – joy in the life these children lived.

Because these children lived full lives despite their diagnosis.

Because these children lived and thrived thanks to medical advancement and yes, prayers.

Because these children lived with purpose…for purpose.

Because we can’t let hope be taken from us in the midst of our anger.

CHD is taking our children…don’t let it take anything more.

The only question that matters.

I had many of you reply to my post about Evan’s heart and the post with follow up questions concerning Evan’s surgery.

Many of you were pretty surprised and “impressed” how much I knew.

Truth of the matter?

I know too much.

I can ask the best heart surgeon in the world, the best cardiologists from around the nation, read every journal article, send questions to researchers about the latest medical advancements…and no one and nothing will be able to give me a straight answer for the only question that plagues my heart daily.

“What can be done so I don’t lose him?”

That’s the only question that matters.

When we were consulting with Boston and meeting with our local team, Craig and I asked every question you could think of.

From surgical outcomes, surgical technique, expertise of the surgeon, patient volume in the centers, best case scenarios, worst case scenarios…you name it…we asked it.

Both places, in their own words, asked us to think about something when making our decision.

“What decision can you make – surgically (meaning choose the Fontan route or full repair route) – where if something happens…you will be ok with that happening?”

Rephrased:

“What surgical choice do you  feel like you can make…and if you lose Evan from it…you will be ok with that?”

It’s a question we had to ask ourselves.

And we came to this conclusion.

Neither one.

Because in both situations, we’d lose him.  And no one – not a single parent out there – would be ok with that.

The sad, hard truth of all of this is that there isn’t a cure.

There isn’t a cure.

Read that again.

There is no cure.

So the surgery may “repair” but the heart may never truly be whole.

The problem with CHD is it takes our children like a thief in the night.  A complete and utter coward.

Our children fight tirelessly day and in and day out.  And when we think we have reached that point where we can take a breath, the thief comes in and robs us of the tiny people that  are our  whole world.

I have been witness to the two dichotomies of the Heartland in the past week.

Complete, miraculous healing.

Complete, devastating loss.

One gives us immense hope that all will be ok.

The other crushes our spirit and is unforgiving in its pursuit to take away all the hope we have stored up.

When we face trying times like these in the Heartland, the anticipation of grief for our own child suddenly grows stronger. The fear, the worries, the “oh my god I cannot lose him” moments come faster and more frequent.  The moments of fleeting sadness when we look at our child play and laugh and we think to ourselves “I can’t bear to be without that smile” suddenly linger and don’t go away.

We scoop up our children in the middle of night, wake them from their slumber, and say prayers into their messed up hair as he/she sleeps peacefully in our arms.

We stop the dish washing when we look over and see him singing or dancing, quickly wipe our hands, and join in the off key chorus and grasp sticky hands to get in a dance step…and tuck that toddler, two step memory safely in our “Evan” (or Bodie, or Ella, or Tyler, or John, or Bennet,  or Izzy, or Zoe, or Emma, or Michael, or Xavier, or Caleb, or Killian, or Tess, or Vivi, or Adelaide, or Maverick or the many more warriors we love…) box.

We decide that last 30 minutes of sleep isn’t as important as snuggles on the couch with his sippy cup of milk and “Dora.”

The ache in our hearts for what we fear the most never goes away.  No matter how well our children are doing.  No matter how they sail through surgeries.  No matter how normal our lives become.

The ache in our hearts for what we fear most….never.goes.away.

As we face Evan’s surgery in the next 12 days, I am reminded that no moment should be taken for granted.  Not a single moment.

Not the tantrums at 2:30 AM.

Not the battles to eat at breakfast.

Not the “I do it!” myselfs to put it on a pair of pants.

Not the crash and boom of toys getting thrown and heads getting “bonked.”

Because, the ache.

The ache doesn’t go away.

The question of “What can you do so we don’t lose him?” is ever present.

In every moment.

The questions.

I had an overwhelming response to yesterday’s post.

It makes me joyful to hear how many are joining us in praying for Evan.  And I am glad that many are “overwhelmed” by his condition.

It should be overwhelming.

And I think that the severity of Evan’s heart is not one to be taken lightly.  It should be respected.  And that’s where these questions come in that I’ve been asked over and over again and some that I think some of you want to ask – but feel like you shouldn’t.

 

The medical questions:

Q: Why Boston?  I thought your home hospital in Dallas was doing a good job with Evan?

A:  Dallas has done a phenomenal job with Evan.  I won’t hesitate for a second in sharing that.  There is, however, a point in which I had to ask myself if Evan’s heart was too much for our center.  It was a judgment call on our end as parents.  We felt that Evan had to be given every opportunity if we were able to do so.  We did our research and heard from many other Heterotaxy parents (Evan’s specific condition) that Boston was what they called a “high volume center.”

We made the trek up to Boston and met with the surgical team.  What we wanted was clarity.  What we wanted was something that would tell us making this sacrifice would be worth it.

And we found it there. Boston sees about 1 similar surgical case to Evan’s condition a week.  While Dallas is a big center, from what I have researched, it only sees about 5-15 cases a year. It has never been an issue of surgical skill because Dallas is highly skilled.  It comes down to the hard fact that the Boston team sees 3 times more “Evans” a year.  That means that they have more numbers, they have more data, they have more experience.   While Evan may be complex and difficult to many, to Boston, he is something they have seen.  He is something they have operated before.  He is someone they have experience and success with.

Q: You said that even if you go to Boston and have this surgery, Evan may need a transplant still.  Why don’t you just stick with the “less risky” surgery (Fontan)?

A: One of the many challenges we face with Evan is not just his heart.  His heart is directly related to his syndrome – Heterotaxy Syndrome (or Situs Inversus).  While the Fontan in “normal” single ventricle patients will fail – either the heart or the liver fails – which lead to transplant.  In Heterotaxy, there are sometimes hidden and unusual vasculature (blood vessels) within the hepatic circulation (liver circulation) that drives the Fontan to fail much faster.  The chances of the terminal risks associated withe Fontan – namely something called Protein Losing Enteropathy (PLE for short) or plastic bronchitis is increased by 35-45% in Heterotaxy kids.  Because of the uniqueness of Heterotaxy, often what is being seen in patients who have had the Fontan is not just a need for a heart transplant but also a need for a liver transplant.  And once you get those two key organs involved – you are looking at systemic (whole body and other organ) problems.  It’s a terrible domino effect.  After Craig and I came to this realization, we essentially are choosing the lesser of 2 evils but it may pay off greatly if the bivent is successful.

Another key is the high success of the Fontan.  Funny, right?  But, with the Fontan seeing so much success, there are children and adults living with a single ventricle heart. The problem here is that the Fontan will fail. And when that happens, a transplant will be needed.  The supply for hearts in the future will be so great and there just may not be enough donors to save those who need hearts.

Q:  I still don’t get it.  If you say the bivent – Boston surgery works – why would there still be a risk for transplant?

A: In every complex congenital heart defect, there are myriad of issues that can greatly affect the integrity of the heart muscle itself.  How the valves work, the pressures in the chambers, the electrical conduction pathway of the heart, etc – are all interelated to overall success of the heart function (or the squeeze and relaxation of the muscle).  When the function is compromised, you have to consider the ramifications of that and sometimes the only option is transplant.  This doesn’t just apply to Evan’s special heart, this pertains to all complex heart defects that require a lot of “work.”

Q:  You keep saying this surgery is “risky.”  I get that it’s a heart surgery, but Evan did great the last two times.  Why is this one a bigger deal?

A:  Because no matter how routine a surgery is, there is a great risk behind it.  Evan’s surgery is risky because of all the work that has to be done to his heart.  He will be on cardiopulmonary bypass (a pump that acts as his heart and lungs while his heart is stopped and the surgeon works) for a much longer time than he has been in the past. With that, comes great risk.  But, there are measures taken to keep this process as safe as possible.

We are going all the way to Boston because Dr Del Nido, the surgeon performing the surgery, can be argued as one of the best cardiothoracic (CT) surgeons in the world.  He sees a high volume of heterotaxy kids and feels a familiarity with Evan’s specific defects.  He is also one – if not THE best – valve surgeons.  Boston has a department dedicated to following those who have valve issues and the valves in Evan’s heart will need to be watched for his lifetime.

I feel confident in Dr Del Nido’s abilities surgically. What is crucial, though, is the recovery.  Evan has to do the rest.  My boy has to learn to adjust to his new circulation and the rest of his body has to comply.  This is the part for me where the risks lie.  Stupid heterotaxy also plays a big role in this.  There is an increased risk of infection, a greater chance of abnormal heart rhythms post surgery.  There are many complications that can happen in recovery…but that’s why we are going to Boston that sees patients like my boy on the regular.  We know they will be able to manage anything that may arise.

Q: Since this surgery is so big and Boston will repair his heart, why will he need more surgeries or heart catheterizations in the future?  

A: Think of this surgery as taking a car engine that needs an extensive amount of work done to get it working to its potential.  But, you wouldn’t make the assumption that a tune up, or new hoses, or some tinkering here and there wouldn’t be needed.  That is essentially what has to happen.  This is, what we hope, is the first of a successful journey to a valve replacement…and that’s it.  Evan’s pulmonary valve will need to be replaced when he is older.  Because, well, he will outgrow that valve.

The valve that has to be split in two to make the mitral and tricuspid valves will need to be monitored very closely.  There is a chance for it to be “leaky” or “regurgitation.”  If this is the case, another surgery will be needed to fix the leak or change the valves.

If valve replacements after this surgery is the biggest hurdle we face for Evan – I will take it.  That is what Craig and I hope for.  Is that in the future as a teen or an adult he may need a new valve…and not a new heart.

Q: Man..so with all the work…how long will surgery be?
A:  Long.  I will get details from the surgeon on pre-op but even then it is just an estimation.

Logistic questions:

Q: When are you leaving?

A: I am leaving with Evan on 2/20 for pre-op on 2/21. Craig and Isabelle will follow us on 2/22 because we are trying to save as much of Craig’s time off from work for Evan’s recovery.  Surgery is 2/24.

Q: How long will you be in Boston?

A: Our cardiology team in Boston cannot give us concrete dates on what to expect in recovery.  We hope to be out of the ICU within 2 weeks.  But we just don’t know.  To be prudent and to make sure Evan is in Boston if complications arise, him and I plan on staying there for at least 2 months after surgery.

Q:  Wait…you just said Evan and you.  What about Craig and Isabelle?

A:  Oh the joys of the Heartlife. My family will be split in two once again…only this time…we will be thousands of miles from each other.  We need Craig to work (as long as Evan is stable) to save his time off in case we travel back to Boston for follow up visits. And as much as I love my Isabelle, she needs her routine.  And although I have been homeschooling her, she will get to go back to pre-school with friends and teachers that love her. As difficult as it was for us to be apart during Evan’s heart catheterization in Boston, we hope that Craig being home with her will be easier on her.  Our hope is for Craig to fly every weekend to Boston to visit Evan and I…and if we can swing it…Iz will come once more while we are away.  Yes..you can cry. My heart breaks thinking of being apart from her for over 2 months.

Q:  Where will you stay?

A:  We are staying in family housing that is similar to the Ronald McDonald house.  It is for medical patients in the area and their families who will be traveling for care.  Evan and I will have a room with 2 queen beds for when Iz and Craig are with us and a Pack n’ Play for Evan to sleep in.  There are play areas, living areas, and full kitchen. It is MUCH more affordable than a hotel or renting a furnished apartment.

Q:  Holy moly…flying to and from Dallas, hotels…how much is this going to cost?

A: A lot.  As we say in the Hounsel house – hashtag truth. Our medical deductible, the cost of flights, the cost of accommodations, the cost of meals…it all adds up.  But, we knew this decision to travel for care would not be easy especially for us financially.  But, when it comes to your child…you find a way.  And Evan is worth it.  We never look at finances when we make medical decisions for Evan (or Isabelle).  We have some amazing family support and know that things will work out. Some may think this is irresponsible not taking into consideration the financial aspect of all this. We have taken the financial aspect into consideration…and we came to the conclusion that we just can’t put a dollar amount on the best care.

Q:  What do you need?  

A:  Prayers. And more prayers.  (I will do a specific and LONG post on my prayer requests). I don’t blog and have a Facebook page for Evan because I like to YOLO it.  I share his story because 1) I hope to give encouragement to another family going through the heart journey, 2) To be a living testimony of God’s healing power, and 3) To have a way to share his story with the masses so we can band together in prayer and cover our boy and my family during all of this.

So share our story.  Share our blog and our FB page.

Q: Ok, we get the prayer part. But, what do you need tangibly?  

A:  I don’t know to be honest.  I have a friend here who has offered to do a meal train for Isabelle and Craig for when they return to help Craig get adjusted to being on his own. I’ve had friends ask to send care packages to Boston for us.

Since I have never stayed in the family housing or in the hospital – I’m not sure what their policies are for food being stored in the bedrooms or patient areas.  I know I have a shoe box size area for food in the pantry and refrigerator…so that is not a lot of space for me to keep things.  While I really appreciate the gesture, there are so many little details about being away from home that are foreign to me.  While we loved getting care packages for our family full of snacks and yummy things our past hospital stays – Craig was able to drop them off at home and not keep them at the hospital.  I will get meals for Evan through the hospital and my plan is to just purchase meals for myself  (there is a Starbucks across the way, Au Bon Pain in the hospital, some local pizza places, a killer burrito place, and  food court next door. (So maybe someone can hook me up with a personal trainer for when we return…holy hospital stay weight gain Batman.)

I love the idea of cards and small items for Evan to help cheer him up – balloons, little toys, crayons and coloring books.

I will need constant reminders that you haven’t forgotten me or Evan…so drop us some snail mail with a post card, send me a shout out on FB, comment on my blog posts, write an email. Text me. Call me. *(If you want to mail me something in Boston, I will post an address once we get to Beantown).

Or come visit us when Evan is out of the ICU. Please take your personal vacation days, spend your own money to buy flights and hotel stays to give me a quick hug. That’s not over the top at all.

But, we are really blessed.  Truly –  in that all we could ever want or need for our family. So what we need most is prayer.

For now…the only prayer I ask for is for health over all of us but especially Evan.  He is getting over a double ear infection and head cold and we need him healthy and well or we will have to reschedule surgery.

I hope I answered your questions – if not – we are an open book – our story is meant to share, inspire, give hope and be a testimony – so ask away.

Thanks for all your prayers, good thoughts, and super healthy vibes.

Evan is a fighter.

Join the Fight.

 

Evan 101.

I’ve been asked many times what exactly is “wrong” with Evan’s heart.

His defects are diverse, complicated, rare.

Understanding his defects in a quick 5 minute conversation is really impossible.

It took me a while to learn his heart.  I had to learn what normal looked like in order to learn all of Evan’s “special.”

It also took me awhile to decide if I was going to post this.  To see all that needs repair makes me incredibly sad and I still feel guilt in that maybe something I did or didn’t do made him this way. And seeing all of it…it will be overwhelming to many of you…

I just need everyone to promise to see EVAN…not his heart…when you see him or meet him.  It doesn’t define him in any way…it’s just a part of who he is.

But, to really grasp the “biggness” of what we are about to do for Evan in Boston, I have to try and explain what Evan’s heart looks like and how it is so different from what a “normal, healthy” heart is supposed to look like.

I’m doing this because I get so many emails and messages from friends, family and strangers of people who know “so and so” who had heart surgery and is doing super.  Or messages about how excited people are because Evan’s heart will be “fixed.”

I know I flippantly call this surgery a “repair” to “fix his heart”.  Once you see how much “work” his heart needs – you will hopefully understand the magnitude of what is about to happen to our boy and how much of his heart will need to be monitored for the rest of his life.

The difference with this “repair” in Boston and what Dallas proposed is that the surgeon in Boston will give Evan as close to what a normal heart should look and function.  It will however, require him to touch and manipulate parts of his heart that normally should not be touched or manipulated.  There will not be a inch of Evan’s heart that won’t be handled during this surgery.

Dallas – proposed a temporary fix – which would ultimately lead to transplant.  How long that would be…we just would never know.

That being said – the Boston repair is young.  And the outcomes are relatively good. But, there are still patients who DO end up with transplant.  But, it is our hope that Evan will be able to handle the new circulation and not need a transplant in the future.  He will – however – need intervention again in the future – a heart catheterization and even another open heart surgery.

I just need to reiterate, a transplant is something every complex congenital heart patient is always told is a possibility.  That’s just the lay of the (heart)land.

I know some of you – my doctor friends in particular – have a lot of questions.  I plan on doing an FAQ about the surgery and our plans.  But for now…take a potty break and grab some coffee – you are about to get schooled on what an incredibly special heart my son has.

 

Here’s normal:

Capture

Normal heart – (blue blood – de-oxygenated) enters the Right atrium via the Superior Vena cava and the inferior vena cava

–          Blue Blood flows from the right atrium into the right ventricle via the tricuspid valve (valves help prevent backflow)

–          Blue Blood is then forcefully pushed out the right ventricle through pulmonary artery to the lungs

–          Blood will get oxygenated in the lungs

–          Blood returns to the Left Atrium via the pulmonary veins (blood is now oxygengated – RED blood)

–          Red blood flows from the Left Atrium (LA) to the Left Ventricle

–          Red blood is forcefully pumped out of the LV to the body via the aorta

Here’s Evan’s heart:

The areas with the “NO” sign marked through are areas where a defect is present.

Evan's Heart

 

 

Evan’s heart

1 – NO septum – he has large holes in the middle of his heart so while he has a left and right side of his heart, the has holes and very little differentiation between the atrium and ventricles – he has a large chamber where oxygenated blood and deoxygenated blood flow

2a, 2b – because of the large holes in his heart and where the walls of hit heart did not form, he does not have these key valves for the right and left atrium to ventricles  has a common AV (atrioventriular valve) valve into the large chamber (he lacks the tricuspid valve and mitral valve)

3 – his pulmonary artery is very narrowed – called stenosis – above, below and right where the opening is.  This makes it very hard for blood to be pushed into the lungs from the right side of his heart. This is also referred to at the Right Ventricular Outflow Tract.  This causes pressures in his heart – namely the right side to be higher and cause the heart to work harder.

4 – the aorta is responsible for oxygenated blood to the body.  His curves to the right instead of the left.  And because of the large, single chamber of his heart, it currently leaves from the Right Ventricle instead of the Left ventricle.

5 – Superior vena cava – this allows blood to return to the heart – Evan has 2 of these – called bilateral SVCs.

6 – Inferior vena cava – this allow allows blood return to the heart – Evan does NOT have an inferior vena cava.  He has flow through his liver which allows blood to return to the heart via other routes.  This puts pressure on his liver.

7a, 7b – Pulmonary veins – they are not in the correct place – called Total Anomalous Pulmonary Venous return

8 – his heart is what is called dextrocardic – it sits in the right side of his chest instead of his left.

 

  Evan’s planned repair

1 – septate the heart.  The surgeon will use synthetic material to make right and left ventricles to make very clear pathways for de-oxygenated blood (Right side) and oxygenated blood (left side) to go.

 2a, 2b – Dr. Del Nido will split the common AV valve into right and left valves – tricuspid and mitral , respectively.

3 – his valve will be replaced with what is called a pulmonary conduit with either a human donor valve, synthetic, or animal valve. The plan currently is to use a human donor valve called a homograft.

4 – once the heart is septated – the surgeon will move the aorta to the left side of the heart so when the heart pumps, it will pump from the Left ventricle as in a normal heart.

5 – he will “unhook” the current connections to his pulmonary arteries that were established by our Dallas team.  Because the blood flow through the pulmonary artery is how the blood will get to the lungs.

6 – nothing – but with the additions of the repairs above – there will be less stress on the liver

7 – when the surgeon septates the heart, he will do so in a way that the veins will go to the right place in his heart.

8 – just adds a level of complexity and difficulty for the surgeon.  Nothing to be done…just make sure when Evan says the “Pledge of Allegiance” he puts his left hand over his right sided heart….

 

There you have it.

Now…that you know his heart.

Remember, that he’s mine…my heart no matter how imperfect it may be.

And pray for him even more fiercely than you could ever imagine.

 

February – Apples and Oranges.

***Blog Repost from February 2014***

Apples and oranges.

People say all the time when you are comparing things that are so different that you “can’t compare apples to oranges.”

And that is supposed to make the argument just.

February is Heart Month.

Congenital Heart Disease Awareness month.

The month where you may see hearts about with zig zags through them to signify a broken heart…and a saying about to “Ask for a pulse ox!” or “Ask at your 18 week anatomy scan if there are 4 chambers seen in the heart, if the stomach is on the correct side of the body, if the doctor is able to see the great vessels!”

You may get inundated with these little reminders and then see the pink cheeked kid along with the reminder and think, “CHDs can’t be that bad.  Look at that kid.  He’s doing great.  At least it’s not like cancer.  Now that is bad.”

Apples and Oranges.

I hate – yes HATE – when people say that CHDs aren’t as bad as cancer because the kids can do relatively well.

I hate when people say childhood cancer is not as bad a CHD because at least there is a cure for it.

I hate when the statistic about how funding is 10 times less for CHD than childhood cancer or vice versa is thrown around.

I hate when I hear that CHD occurs in 1 in a 100 lives births (that is a generous saying because well – some never make it to birth).

I’m all for awareness.

I don’t like when we have to compare CHD to childhood cancer to get our point across.

The point being that CHD is a lost illness.  It’s lost in the media, it’s lost in the funding, it’s lost in the conversations of those things that are devastating.

Because it’s apples and oranges, right?

Wrong.

There is a common denominator with these two things – childhood cancer and congenital heart disease – our children.

Our children are suffering.  Our children are fighting battles in hospital beds.  Our children are going through risky and dangerous surgeries.  Our children are taking experimental medications. Our children are dying.

Our children.

I speak so much about CHD because I do not think people are as aware of it as they need to be.  I think the problem is that we may be making people aware of what a CHD  and how it affects me but the muscles behind our stance is weak.

You – my dear blog readers – aren’t truly connected to it like us in the Heartland.

I bet you know someone or you know someone who knows someone that battled cancer or is fighting cancer – maybe an adult or maybe a child.

But, it’s that six degrees of separation that make you connected to the awfulness that is cancer.

And, welp, there is a good chance the first time you heard about a congenital heart defect is when you started following Evan’s story.

And you “know” me – but not really.

You “know” our story – but may not feel the connection to CHD as you do cancer because it’s not a part of your reality.

That’s where we come in.

The Heartland.

That’s where we step in and turn awareness into action.

This is our time to blow up news feeds on Facebook, pin boards on Pinterest, write blogs about their fight – so maybe – just maybe – more of the 1 in 100 – decide to speak up about the #1 childhood killer in the world.

Maybe – a neighbor or a friend or a student in your child’s class – will feel confidence in letting their scar peak out from behind their shirt.  A scar that may not have been shared due to shame, due to fear of judgement, due to lack of education.

Maybe you’ll share our blogs, our status updates, our conversation – and you’ll tell your friend or your kin that is about to welcome Baby to the world – and you casually remind them to “ask them to do a pulse ox” and perhaps it may save a life.

We desperately want to connect with you.

We want our stories to make an impact in your world.

We don’t want to compare our child’s plight to another child fighting cancer because we feel like maybe this is the way our point will come across.

Because cancer is awful.  It takes lives.  It takes spirits. Kids don’t make it.

That’s the truth.

When you see our rosy cheeked children run and play, don’t think that their fights aren’t as awful.  Don’t think that their spirits haven’t been beaten.  Don’t think that their lives may be spared.

Because Congenital Heart Disease is awful.  It takes lives.  It takes spirits. Kids don’t make it.

Apples and Oranges.

Let’s not compare the two any more.

Let one be a reminder to another – that behind the statistics, behind the awareness, behind all the points we want to get across to you – that there is a common thread between the two.

Our children.

Our babies.

And when it comes to that, their fights have no comparison.

 

 

My Warrior

 Evan – February 2015