5 Minutes in a (Heart) Mom’s Head


I laughed so hard when I read this blog that I came across about what it is like to be inside a mom’s head for 5 minutes.  

I sent it to my husband to show him my crazy is shared ’round the world by women who lovingly (and tirelessly) call themselves “Mom.”  He then added, “Man – this is just s small bit of what’s in your mind.  If only people knew what it was like to be inside your head…!”

So…here goes.  

5:46 AM – Sh!t. It’s almost 6.  Why haven’t I heard him?  Is the monitor on?  Is he breathing?  Is he…?  No…don’t go there.  He’s fine.  But just to be sure, let me take a quick peak.  Where is that pulse ox?  I think I put it in the night stand.  What the hell is all this crap?  I need to clean out this drawer.  Oh hey – there’s that bulb syringe that I love.  Oh man…how long has it been in there for?  Wasn’t there an article about mold and bacteria growing in those blue suckers?  I need to find it.  Because there’s probably Ebola growing in that mess.  Is Ebola a bacteria Evan can fight?  Ebola was eradicated.  I think it was one of those diseases on World War Z that Brad Pitt injected himself with.  That was a good movie.  Ha.  Evan would survive since those zombies didn’t eat the people that were sick.  I need to eat breakfast before the kids wake up.  Maybe I should work out instead.  Oh yeah!  The pulse ox is by the DVD player where I put in the work out video yesterday when I was going to work out.  But, I thought he was breathing weird so I took his oxygen and forgot about exercising. And then I ate kettle corn instead.

I love this pulse ox. It’s the bomb dot com.  Ok…he’s breathing.  He’s on his tummy though.  Hmm…that’s new.  Is he able to get in good deep breaths like that?  That’s going to affect his oxygen saturations for sure.  But, is he on his tummy because he laying on his back is decreasing the intra-abdominal pressure and it feels better?  Wait…if he’s doing that that must mean something is making his stomach hurt?  Is his liver enlarged?  What side is his liver on again?  I need send an email to his cardiologist and GI doctor today and confirm.  Let me ask on Facebook first and see if my Heart Moms know.  Why hasn’t anyone responded to my question?  10 people have viewed it already.  Oh no..no one has experienced it.  Fu#$#!  It’s rare.  I knew it.  Oh wait..here’s a reply.  “Don’t have any experience…but I’d ask your cardio.”  No sh!it, Sherlock.  Didn’t you read that last line, “I will email my cardiologist but wanted to check here, first.”  Ok – Czarina – don’t be a biatch.  I hate how Facebook makes me a mean person.  Ha – there’s that funny article circulating around about “auto correct texts.” It’s so funny…I love Facebook.

Ok…which toe do I like?  The right toe gives me good readings but his foot is tucked under neath him.  Maybe I’ll try his thumb.  His thumb and his toe are kind of the same size.  Hmmm…that seems low. His heart rate is a little low.  It’s supposed to be low though.  That’s a sign of deep sleep.  His oxygen is a point lower.  Let me nudge him a little and maybe he will move so I can get to his right toe. His right toe is the money maker – I always get the reading I want with that right toe.  Oh no, oh no…don’t wake up…don’t wake up…just roll over so I can get to your right toe.  SUCCESS!  Hmmm…he’s breathing a little weird on his back.  I wonder if gravity is pushing on his heart too much an not letting it pump effectively.  I wanted to see “Gravity” in the movie theaters.  Sandra Bullock and George Clooney are such good actors.  I can’t believe George Clooney is finally getting married.  He’s kind of old…but he’s still hot.  If I think an old man is hot…does that make me a cougar?  No…that’s if I think young guys are hot because I’m old.  I’m 34 going on 85…I need a girl’s trip to make me feel young again.  Let me post that on Facebook and see if my “friends” want to go on one!

Eff it.  I can’t get a good reading on his right toe.  His numbers still don’t look like his norm.  I HATE this pulse ox!  Let me write an email to his cardiologist.  “I did a spot check on Evan this morning and he was satting lower than his norm.  While he normally sits around 93-94, his oxygen sats were around 92. Should I bring him in?”  Hmmm…that kind of sounds neurotic.  Well…of course I’m neurotic.  My kid has a freaking heart that doesn’t work like normal! I need to get on meds. I’ll get Evan’s meds ready so when he wakes up it will be ready for him.  I’m such a good mom.  Ok…1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12.  All 12 meds are ready for when he wakes up.  Hey – are we out of M&Ms?  He won’t take his meds unless I bribe him with M&Ms!  He’s going to end up throwing up all of his meds and then I’ll have to take his stupid vitals all day long and we have 2 therapy appointments today. He needs to “perform” well so the therapist knows that we have been doing our homework.  I need them to know that we work all day.  Ok – maybe all day is a bit of an exaggeration.  But, I worked on his physical therapy yesterday – kind of.  I mean – isn’t letting Evan push around his sister in the laundry bin working on his leg and core strength?  And I totally let him cut with scissors – that’s fine motor at its best.  Ok so maybe I found him with his scissors cutting his hair in the bathroom.  But, when I found him he had cut off a good amount and he even said, “Look at me, Mama!”  He was so proud.  He cut something – fine motor skills.  AND – he put together 4 words!  Speech therapy done!  Oh wait..I ate the M&Ms with my kettle corn…I’m such a bad mom.

Let me try his left toe….winning!  His left toe is giving me the numbers I like!  Hmm….I wonder if his right toe isn’t getting perfused as well as the left.  Could there be a clot in his right leg that is causing the lower sats on his right toe?  His left toe is showing 93-94 but his right toe is only showing 90-92.  Oh NO!  His oxygen just jumped to 95!!  Could he be overcirculating?  Is that why his breathing is weird?  Let me get Google “2 year old respiratory rate while laying on back and/or stomach is there a difference and could it mean heart failure.”  AH! There are too many articles. Let me post this in my Heart Mom group and see if they know.  Oh hey – my friend said she was “IN” for the girl’s trip.  Where can we go?  I need to make sure we can even afford it.  I just “ignored” that last hospital bill. I wonder if my “payment plan” I’ve arranged for the 6 different collection agencies are going to be satisfied with my $50 a month plan.  Well…they will just have to be.  I can’t pay off $60K in 2 years.  And we still haven’t gotten all the bills.  I will just pay on it for the rest of my life.  Sigh…I guess I can’t go on a trip.  Screw it!  I’m going – you only live once and medical debt will always be there.  I’m going to suggest a beach trip.  Hmm…that means I need to start exercising and eating well.  I’m under too much stress to give up my wine.  I’ll just wear a tankini.

Sigh…I guess I’ll write another email to his cardiologist and ask about over circulation. I bet Evan is ok and just sleeping in because he’s growing.  I hope he’s growing.  I am shoving calories down his throat like no one’s business.  I’m effing tired of counting every single calorie. And if one more person tells me, “He’ll eat when he’s hungry!  Stop stressing about it!” I’m going to to ballistic.  My kid’s heart works twice as hard as a normal heart and I have every specialist is breathing down my neck to get him to gain weight.  I don’t know why he won’t gain weight – he gets donuts, avocados, whole milk with fortifier, chips, hot dogs – whatever the hell he wants when he wants it.  I’m gaining all the weight!  If I keep up with this high calorie diet – I’M going to be the size of house.  I need to work out more and eat clean again.  After the kettle corn is gone…I’ll start then.

Let me write another email to his cardiologist and nutritionist and see if his lack of weight gain is a cause for cardiac concern.  I’ll do it in bed though.  It’s too dang early and Evan will probably sleep another hour or so.  I hope he sleeps in so I can get some rest.  But, wait…if he sleeps another hour or so…that’s going to be 30 minutes longer than normal.  Could that mean he’s over tired and his heart is working too hard?  I’ll send another email to his cardiologist.  I bet he appreciates how attentive I am to Evan.  Or he thinks I’m crazy.

Nah…I just need more rest.

5:52 AM – 30 minutes before I start my day.  Then the real worrying can begin.

 

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This is a picture of non-crazy mom.  

 

 

 

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

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.

 

After the turkey.

It’s 6:30 AM and the sound of “Mama” from my best boy’s mouth is coming from his baby monitor.

I get up, get a sippy cup of milk ready, fill syringes for medicine, and pour myself a big cup of coffee for the day.

I walk into his room – dimly lit with the hum of the humidifier in the background – and my almost 2 year old jumping up in down in his crib – holding onto the rails to get extra air under his feet.

He smiles – lots of teeth now – and screams, “MAMA!” as loud as his little body can muster.

I pick him up, cradle him good morning, smell his sweet Evan scent, and off we go to start the day.

I’ve made it part of our routine to lay my hands on him and pray.  I close my eyes, ask for guidance, pray for health, pray against infection and illness…it’s part of the ritual of our everyday that I need him to hear.  Need him to know…that when I say, “God…please help me.  Help me and guide me to make the best decisions for him.  Help me and guide me to do what is best for him.  Help me and guide me to give him what he needs.  Help me and guide me to be the mother you have called me to be.”

It’s a prayer I speak out loud.  So he (He) can hear me.  Desperate.  Pleading.  Needing.

On October 13, 2011 – we found out about Evan’s diagnosis.  His incredibly special heart.  His incredibly special path.

Just like I do every morning…saying those same prayers….fervently…obediently…I did the same on that day 2 years ago.

I started praying for my boy then.  Needing God’s direction.  Knowing that sometimes the choices in this journey wouldn’t always be easy.  But, knowing that I had to make them.  Had to do whatever I could for the son I loved so dear.

This week is full of excitement for so many of you. As it should be.

The holiday season is in full swing.

Turkeys, ham, stuffing, friends, family….Christmas season quickly approaching.

As many are preparing for meals and gatherings…I’ll be preparing to board a plane with my best guy and and my best boy.

We are taking a leap of faith and hope and talking to – what is arguably – the best pediatric cardiology team in the world – to see if there is another option for our Evan’s special heart.

So many of you don’t quite understand – since you see pictures and hear stories of my boy – and from the outside – he’s robust – he’s sturdy – he’s a tornado toddler – he seems “normal.”

And quite honestly, I don’t get it either.

I look at him and can’t believe that he has another open heart surgery in his oh so near future.

I look at him and can’t believe that I have to hand him over again.

It’s agony.

Utter agony knowing that we have to do this for him.

As the months have passed and we have watched Evan grow and become this boy that we have prayed for, Craig and I decided we would research every option out there…not wanting to look back on any part of this journey and say…”If only we had…..”

The hard part about living with no regrets is doing things that may be out of your comfort zone.

Our local team in Dallas has been exceptional.  To seek out this other opinion has been a tough decision for Craig and I.

Because quite frankly, how do you argue with the care we have received here?  How can one look at Evan and think….something more can be done?

As we spoke with our team here, through data, through tears…we discussed what the plan should be for Evan.

Our cardiologist was honest, blunt, and relayed data to us to give us the best objective opinion.  He feels strongly we should stay the course and the next planned surgery – the Fontan – would give Evan the best shot at many good years.

And at the end of our conversation….Craig ended it with, “We just need to know we have done everything we can possibly do for him. We need to be able to look our son in the eye and say, ‘We did all that we could.”

So…that’s where we are.

We are arming ourselves with knowledge.  We are going speak to the “best of the best” and let them meet our miracle and decide for themselves if there is anything else that can be done.  To not just give our boy “many years” but to give our boy a lifetime.

While you enjoy this holiday season and give thanks and pray over your the meal you are enjoying…can I ask for prayers?

– For a safe flight to Boston for Craig, Evan and I on Saturday, Nov. 30th.

– For health over Evan the next few days and next week.  Any kind of illness can force us cancel the trip.

– For Evan’s spirit as he endures 2 days of clinic visits and procedures.  He will have an MRI and heart catheterization.  The procedure will require him to be intubated and put under general anesthesia.

– For Evan’s body  to stay strong during the procedures.

– Pray against illness, infection. complications.

– Pray for protection over his heart, his brain, his organs, his sweet little body I love so much.

– For a safe trip home for all 3 of us.

– For discernment and direction.  We meet with the Boston team on Dec 3rd .  Once we hear their findings, Craig and I will have to make the decision on what to do next for Evan surgically.

– For Craig and I. Our spirits are down that we have to do this…but we know we need to.

But also…..in the spirit of Thanksgiving…I leave with my list of thanks:

– Thankful for our team here in Dallas that has given us the best they could give to our son. Thankful that – even though they may not agree with us – they support our decision as Evan’s parents to seek out other opinions.

– Thankful for the kindness of complete strangers who recognized an unspoken need and provided for us in ways we don’t know we could ever repay.

– Thankful that Evan is doing so beautifully.  That his heart is beating strong and allows Craig and I to seek opinions with clear minds.

– Thankful for family that will surround our best girl while Craig, Evan and I are away.

– Thankful for the spirit of understanding Iz has through all of this.

– Thankful for friends and our church that have been praying for us and this decision to go for weeks now.

– Thankful for my Heart family that has been supportive and offered their expertise knowledge.

– Thankful for a loving God – that no matter what decision we make for Evan – has every step mapped out for my boy – and only wants the best for him… and for us.

 

I’m so Thankful for you. Always.

 

Here we go again. And prayer requests.

We’ve had a summer to remember.

Trips to the beach, water parks.

Lazy days at home or friend’s houses playing and laughing.

Ice cream and cook outs.

Playgrounds and slides.

All the things a summer should be about.

Enter 3 months of no doctors visits, no therapy, nothing resembling the life we had only known for the 1st 15 months of Evan’s life.

The Texas heat is masking the reality of autumn and what it brings.

Cold and flu season is on the horizon.

And tomorrow we start in with doctor’s appointments.

After 4 months of blissful ignorance, my boy will be prodded and examined to check his heart.

It’s been 4 months of greatness…but also 4 months of slow decline.

His sick heart has slapped me across the face once again…and has brought me back to the reality of the life we are leading.

While my boy is hearty and full of life…I’m reminded by his breathing that is a little heavier, the oxygen levels a little bit lower, and his coloring a little bit off…that beneath his picture of health is heart that needs careful attention.

There is a good chance that tomorrow will bring good news – that his heart is doing great and our surgery we are dreading that is inevitable is still a year or 2 away.

There is an equally good chance that tomorrow will bring “other” news – that his heart is showing us it needs something more to help it along – and we could be looking at his next open heart surgery in the coming months.

The breakdowns I’m having today are ones I haven’t had in a while.  I’ve realized that I haven’t been living in denial – I’ve been living in the present.

And the present – as of late – has been filled with nothing but joy and normalcy.

But, living in the present – starting tomorrow – will soon be about a life we once knew – a life of specialists appointments, therapies – a life of the other world we live in.  The world that is everything but normal.

I ask – as I’ve done a million times before – to pray for my son.  

1.  Pray that his ECHO (sonogram of his heart) shows that his heart is functioning strong.  That everything is growing as it should be and that his surgery from a year ago will give us more time before his next open heart surgery.

2.  Pray that his lungs are healthy and have not been affected by his heart.

3. Pray that the extra symptoms we are seeing in Evan are just run of the mill illnesses and not related to his heart.

4. Pray for Isabelle – she has started to ask questions about Evan and his next surgery.  She has shown some worries about Evan going to the doctor tomorrow.  

5. Pray for Craig and I as we make tough decisions for Evan’s care and how to further proceed.  Pray for peace for our hearts.

 

Thank you for sticking with us. 

God is good all the time.

 

 

Beat.

I have written, re-written, deleted and thought and thought and thought about today’s post for the past couple of weeks.

I have sat at the keyboard asking my fingers to type something poignant or something funny or something heartwarming….just something.

But, every time I have sat poised ready to talk about today…I found myself in a tornado of emotions…unable to grasp onto one of them…

anger.

fear.

joy.

resolve.

four of the few emotions swimming in my head as I remember a year ago today.

August 27, 2012 – Miracle Day.

August 27, 2013 – One Year Heart Anniversary for my boy.

Strange.

I thought it was strange, too, when I was first in this journey. I watched as other’s posted about their child’s “Heart-versary” or “Heart Surgery-versary”.

I thought, “Why would they want to celebrate the day their child went through open heart surgery?”

It felt grim.  It felt a little twisted.

Why would they want to celebrate a day like that.  A day that was the most awful day of my life.

I was just sent Evan’s surgical notes from his open heart surgery.

Like a novel I couldn’t put down…I hung onto every word in that 4 page, single spaced, 12 font document like my life depended on it.

In ways…I guess it did.

Every second was accounted for.  Every small move was documented.  Every cut. Every stitch.

I pictured my boy…so small…only 7 months old…16 lbs sopping wet…with the courage of David.

I pictured him being “worked” on…lights bright above his perfect head….his sweet hands and feet covered by surgical drapes…hands and feet I kissed…

And then I got to the part that made me stop, catch my breath, and look away from the page.

27 minutes.

The part where it stated how long my boy’s heart wasn’t beating.

27 minutes.

Where a machine (aka bypass) was acting like his heart and lungs while the surgeon worked to mend his heart.

27 minutes.

Where I sat in a room, 4 floors from my boy….whose heart wasn’t beating.

My son’s heart wasn’t beating.

My son’t heart wasn’t beating.

And there wasn’t anything I could do about it.

But, pray for mercy over my son.

Once I composed myself, I went on to read the rest of the document.  Other words were hard to read…painful.

And then the part that I found comfort in…”the heart returned to normal rhythm.”

His heart beat again.

His heart was beating again.

And it was in that moment that I got it.

I understood why so many Heart Mamas celebrate this day.

It’s because it was the day their child’s heart stopped beating…but beat once again…

I didn’t have a choice that day when I handed over Evan to the surgical team.  The odds of him making it to his 5th birthday are grim…but I knew without the surgery there was a 100% chance that he would die.

I also knew with the surgery Evan still may not survive.

I also knew that the type of heart Evan has…even after all the work that has been done to it…still needs another surgery to help it along…and even then…it’s not fixed.

But, on that day…when I handed him over…I promised Evan he would be ok.

I promised Evan that no matter what, I’d love him forever.

And he promised me he’s fight until his last breath.

And by the grace and mercy of God…that day has brought us to this day.

A year.

Our one year anniversary to the day my son’s heart beat again.

A year where my son bounced in a bounce house, ate an Oreo, felt sand between his toes and smelled the salt air of the ocean.

 

A year where he’s found the joys of a sipping milkshakes out of straws and splashing in puddles after the rain.

A year where he suffered in time out after pulling his sister’s hair or from throwing his food to feed his pups.

A year where he got messy in sidewalk chalk or after dinner dessert.

A year where he heard story after story at night night time with sister.

A year where he learned to give kisses and hugs.

A year where I hold him everyday, smell his sweet Evan smell, tell him I love him…tell him I’m proud of him.

It’s been a tough year…for me.

I’ve battled with demons of that day and his diagnosis.  The statistics have me paralyzed with fear.  The reality that he has to have another open heart surgery – where they will stop his heart again – weighs heavily on my heart.

I find myself feeling polar emotions – joy and grief – all at once.  Every.single.day when I see his chest and the tube coming from his stomach a wave of sadness lands over me. He’s suffered so much….and his suffering is not over.

And then as I trace the scar that stretches from his neck to almost his navel….he giggles uncontrollably…the light touch of my hands tickling him. And the wave of sadness is suddenly replaced by immense gratitude that he’s here.

I’m sad everyday.  Most nights I stay up and lie awake wondering about his next surgery.

Friends and family say I shouldn’t feel that way…I should enjoy that Evan is still here.

But, they don’t know what it feels like to know their child’s heart stopped beating.

And I do.

I also know what it feels like to hear the words, “His heart is beating on its own.”

I know that in that moment I was a part of a miracle.  And the feelings of relief, of gratitude are immeasurable.

And that’s why I celebrate today.

Because after the tears of sadness and pain of what Evan has and will go through…

Because after the statistics that say he won’t make it to kindergarten…

Because after the surreal truth we will knowingly and willingly hand him over again…

I know that his heart may stop…

But it will beat again.

It will.

 

You are worth it.

 

 

I RUN4

I’ve started to run again..

ok..maybe it’s more of a jog.

And sometimes…my speed may be seen as more of a fast walk…but a really fast walk with arms pumping and everything.

Running used to be my “go to” work out.  There’s nothing like hitting the pavement and knowing that the only person you have to beat and the only thing holding you back from being your best…is you.

No one else to push you…

No one else to motivate you…

Just you.

And, sometimes, after you hit that moment where your breathing starts to labor, your legs feel like lead…you need to dig deep and find it in you to finish.

“You don’t stop when you’re tired…you stop when you’re finished.”

The words of my old trainer ring in my head as I feel the motivation seep out of  my pores.

Now…

I find myself thinking of Evan as I run.

And not just Evan…but for his buddies with special hearts.

I hear my heart pound in my ears…ba-boom, ba-boom, ba-boom...and think, “Thank God for my healthy heart.”

I feel my legs ache and I think, “Thank God they are still moving.”

I  feel the sweat drip down my back, my arms and think, “Thank God…for this moment.”

I think about my boy and about others who are living with conditions..or fighting a cancer….or mentally challenged…and I find the gratitude and the thanksgiving overflowing.

Because, I can run.  I have a heart that beats and can keep up.  I have a body and mind that allow me to.

When I get tired…I think about Evan and his fight.  I pray, “Buddy…when you get tired….YOU DON’T QUIT.  You keep fighting.  You keep going.  Because your story is not finished.”

And I battle on.

I run because I can.

And I run because so many can’t.

I am in constant awe of him, his Heart Buddies, children and adults in wheel chairs…fighting a disease…fighting a cancer….fighting.

And its in this mentality that I signed up my boy to be matched with someone who may need the motivation in their run. 

And I know that his fight can – and will – inspire and motivate someone to run harder…run longer…run until they are finished.

Who I Run 4 is an organization that matches up runners with those who can’t run – adults and children with special needs.

It’s an organization that allows those special people in our lives to push, motivate, and inspire runners…to finish.

Because, it’s in those moments where it gets hard…where the battle of fighting a disease…living with a condition…heading into the next surgery…that we are reminded by those we love…..

“To keep fighting…keep battling…because…you are not yet finished.”

 

 

Love and Marriage.

I woke up to the sounds of babbling and “Mama” around 5:30 AM this morning.  My little dude was up early today…again.  The loud ramblings woke up Iz as I was making Evan’s morning milk.

6:05 AM.  Whew…it’s gonna be a long day.

The kids were already awake for the day….ready to tackle the summer fun of swimming, ice cream, and napping strikes.

I sneaked away into my bedroom and walked over to the man of my life…somehow was still asleep in all the racket…and gave him a kiss good morning…

“Happy Anniversary, honey.”

Seconds later…I hear a crash from outside our room…

Sigh.  The tiny terrors were at it already.

The two littles…the loves of our lives….the best gift we could have been given on any anniversary.

I get asked all the time how “Craig and I” are doing.  How is our marriage holding up through all of this.

And I give a surprising answer….”We are doing pretty great.”

Despite the stress of our lives with Evan and the normal growing pains a family of 4 has with a pre-school kid and a toddler, our lives are much like everyone elses.

Our marriage is challenged – sure – a bit more than most – but overall – every marriage faces some deep dark pits.  You find yourself in the most difficult predicaments and you have to ask yourself  – can we do this?

This – being the part where you battle through the anger, the resentment, the fear, the frustration, the lack of feelings of “love” you may have on a particular day – and just ask yourself – can we really DO this? Because marriage is active.  It’s not a feeling…it’s a verb.  It’s in constant motion…truly dynamic.  You either move with it, find yourself still in it – refusing to move along for the journey, or walk away from it – not able to find the right rhythm and leaving it behind.

I can’t speak for all married couples (or partnerships) in the Heartland – I can only speak for mine.  I don’t know what their lives look like.  I know many look similar to mine – Heart baby (and all that is included in the package of the broken heart),  probably a heart healthy kid or 2 to add to the mix, money woes, insurance headaches, extended family drama, broken friendships.

I know many couple who have parted ways….many who are still together….all of them..us…..just trying to navigate life in the Heartland.

What I can do is share how our marriage made it through the hardest year of our lives.

1. Who are you?  – Craig will randomly ask me, “So, when the Zombie Apocalypse happens, will we move to Lubbock and live with your sister since they have a basement, guns and lots of food in their pantry?” (Thank you”The Walking Dead”…) Luckily, I know Craig and this question is just one of the many random things that run through his head.  While I research and formulate plans for Evan’s care….his mind is often occupied with nothingness of sports statistics, music, and shows that are riddled with zombies and guns.  That’s who he is.  He doesn’t contemplate or agonize over details like I do.  He deals with things as they come.  He’s serious when he needs to be.  And I had to learn that the hard way…had to learn that he isn’t wired like me.  And vice versa.  He gives me the opportunity to discuss for the billionth time what I want to do for Evan in regards to his care….and even if nothing changes from day to day (or even hour to hour)….he lets me talk about it.  He gives me the chance to dump all the knowledge, all the fear, all the worries out of my mind that is racing a million miles a minute….to get just a second of respite.  And yes….many times I bet that when I talk about the second opinion, the surgical technique, the possible problems Evan could be dealing with…I know that there is a good chance that what’s running through is head is what baseball game he’s going to go to once the season starts.

2. Date night – When your child is hooked up to monitors in the I.C.U., it’s not the best time to book reservations to the hottest restaurant in town.  But, Craig made it a point to drag me away from the monitors and either sit in the family waiting area or run down to the cafeteria for a bite to eat.  Granted, that’s not a date night to many. But, to us, getting away – just the two of us – to breathe together, pray together, have a conversation that wasn’t punctuated with medical terminology – was so important.  He knew I needed a break even though I didn’t feel like I deserved one.  Basic things like eating were the last thing on my mind…but taking care of yourself is all you can do in times like those in the I.C.U….so that when your little one is out of the woods…you’ll be at your best.  Now, that we are home and Evan is doing pretty well, date nights are few and far between. Like REAL date nights – where I take off the yoga pants and put on a dress (and shave my legs), put on some makeup and take off my glasses, and shower….  But, when they happen – they are cherished.  And, during those in between times between the rare date night, we make an effort to have mini ones.  Yes…turning off our iPads, curling up on the couch to catch up on trash T.V., with a dessert may not sound like much…but again…it’s time for just he and I.  Time…together…to connect.

3.  After the date night.... – make time for THAT too.  Trust me…it’s worth it.  It’s really difficult to do the deed with someone you’re angry at, upset with, etc.  But to do it…you gotta work through a majority of it.  I get stress….I get it.  And I get exhaustion…I get it.  Once upon a time I was up every hour to hour and a half for Evan. But, we still made time for “it.” Because you get a closeness and an intimacy that I think we all crave in times of trouble.  Reminders of normal (and there’s nothing more normal than that…), time to rediscover why you said your “I do’s”, and for me…it’s a welcome reminder that I’m not just a mother but I’m also a someone special to another soul out there. And I need to feel that…to know that…to know that no matter what happens…I am still loved deeply even if I may not love myself that much.

4. Find the page and get on it – in times as complex as these – medical decisions for Evan, regular life things like money, family, faith – it’s important that Craig and I are in agreement on things that matter…like really matter.  It’s hard enough to make tough choices…but if your partner in crime and you are butting heads on an issue…that is a stress unlike any other.  I can’t tell you how to get there…I just think it’s important that you both find a way to compromise to get on the same page about things that count.  Regular life things are crucial too in the midst of the complex Heart stuff that we deal with.  And the medical stuff…this stuff is scary hard.  It’s scary because I don’t want to make a wrong move for Evan that could literally cause him his life.  Craig and I often used prayer – each of us praying on our own and together – to make the best decisions for Evan.  That was our way of getting to same page….

5. Step away – from each other and from the Heartland.  Just recently, I’ve been making time for me.  Just for me.  Not a grocery trip to restock our pantry – because that’s a chore.  Not an errand to shop for shoes for Iz, onesies for Evan… time for me.  I’ve found yoga to be my new happy place.  I’ve found that a good book, a glass of wine, and restaurant reservation for 1 is ONE-derful.  Making time for stuff other than each other, other than the kids…but for each of us as individuals…makes Craig and I both pretty happy.  Yes…to the outsider it may seem a bit depressing…and maybe it is to some degree….but going out alone and doing stuff that  matters to ME and me alone is great.  What’s crucial here is that I have found to trust Craig with Evan’s care…I can’t step away from it all if my mind is still at home.  It was a long process…a year in the making.  But, someone other  than me needs to know how to care for our boy and for Iz….

6. It is just about the two of you – No matter who surrounds our life and your journey – parents, siblings, friends, doctors, specialists – the bottom line is – its still OUR marriage.  We had to make the decision to tune out the opinions of everyone – and make decisions for Evan and for our little family of four based on what we felt was best.  Often, the people you love the most want to feel included and need to give opinions on every part of this walk. It’s hard to look your mom in the eye – and say with love – “I need you to stop.” And yes….we often consulted with family…and of course we consulted with Evan’s doctors…but ultimately…Craig and I had to be a united front and we had to man and woman up and sometimes say, “We got this…but thanks for your input.”  We know everyone has Evan and our best interest at heart…we know this….but ultimately…every decision we make for Evan…will affect our family of four and our marriage.

7. Pray – I pray for Craig and he prays for me.  And we pray together.  For Evan.  For Iz.  For our present, for our future.  For the blessings. For the trials.  All of it.

8.  Pride aside – when we are in the heart of our trouble….I often forget to put up my filter and allow things to escape my mouth that are hurtful to Craig.  And vice versa.  We make the decision all the time…to say “sorry and will you forgive me” quickly….we try to not allow something hurtful that was said or done out of the stress of the situation we are in to infect the rest of our days.  Anger, resentment, fear….all are like a disease and can hurt the rest of our marriage if we don’t remedy  it quickly by just saying, “I’m sorry.”

9. Sometimes you just gotta Wee Bey it (a la “The Wire”)- shrug your shoulders, take it all like a man, and say ‘eff’ it.   It all gets piled on you…all of the stuff you know and all of the stuff you don’t know.  This journey is full of twists and turns.  Every cardiology appointment is met with anxiety….no one really knows without a shadow of a doubt….that Evan will be ok.  And sometimes…when it all seems like too much ….because frankly…it IS too much…all you can do is shrug your shoulders, take it all in…and maybe not say ‘eff’ it…but give to a higher power, to God, the universe… http://youtu.be/0qBPK4wpZpw

10.  It’s just a season – Craig and I remind each other that all this hard we are dealing with – is just a season of our lives.  Evan is now over a year old!  Whoa!  We made it through some of the hardest time of our lives.  As we face another heart surgery in less than 2 years…, we are dealing with all the fears and the anxiety that accompany handing your child over.  But, we have to move forward…face the next surgery and the next cardiology visit to check on Evan’s heart….and get past this season.  There will be a season of sunshine soon….we have been blessed with some beautiful days…we know more storms may come our way…but we both hold onto hope that we will have more sunny days.  And through it all….the storms and messes it leaves behind…we both make the decision every day…every moment…we want to be there for each other to enjoy that sunshine.

A letter of apology.

Hey buddy,

One life lesson I need to teach you, Evan, is to be able to offer a heart felt apology when  you know you’re in the wrong.

Sometimes, in life, you’ll realize there are some that won’t apologize – and you’ll find yourself apologizing to someone you love on their behalf – because – well – it’s the right thing to do.

The past few weeks, I’ve been trying to find the right words to adequately express what I’m feeling.  And I search my mind…look at you…and realize…the classic way is the best way.

“I’m sorry.”

I’m sorry, son.  I’m sorry for so many things…for others…for me.

I’m sorry for doubting you.

I’m sorry for putting you in a place that is so beneath your abilities.

I’m sorry for thinking anything less of you than what God made you – a miracle.

I’ve watched you reach milestones I didn’t think were possible without extensive therapy.

Part me of has been setting the bar low so that you wouldn’t get your feelings hurt if you didn’t reach a goal.  Funny thing is – it was my feelings I was worried about.

You…you laugh everyday…just trying your best…doing what you love most…living.

And in your everyday – you’ve just been a regular toddler – exploring and destroying.

Another Heart Mama pointed out to me that I can’t let my fears of your life dictate what you can – will –  become.

And my, boy, what you can become is greatness…and nothing short of that.

It is hard letting go of those fears.  After all, your life is dictated by statistics.

People say to stop listening to those statistics…but if an expert in the weather tells you there is a 75% chance of treacherous thunderstorms…you’d stay indoors and be safe, right?

So…when I was told that there was a greater than 50% chance you wouldn’t make it to your first birthday…

So…when I am being told that all of the surgeries…two heart, one stomach, two cleft lip and palate, 3 heart catheterizations…the combination of all these and the time under anesthesia will greatly affect your development…

So…when I am being bombarded with statistics that you may not make it to your next surgery because of ‘complications’….

I’ve been choosing to stay indoors and be safe…avoid the storms.

But, you my child…my miracle…have chosen to strap on your rain boots, take out an umbrella, sit outside, and wait for the storm.  And while you wait…you joyfully live your life…choosing to ignore the statistics and surprising so many…including me.

Every time I set the bar so low for what I think you can do…you take that bar…use it as a step stool…and reach up and beyond…and won’t stop.

Some may look at what you are doing now and kind of shrug and say, “Well…he should be doing those things…he’s 16 months old.”

And for them…I apologize.

Because they don’t know your story.  They don’t know yours and your heart sisters and brothers…they don’t know that having breathing tubes in your throat cause major oral aversions to food and drink.

They don’t know that months and months of hospital stays and being immobile can cause severe motor delays.

They don’t realize that the surgeries and procedures you have endured…could have killed you…but you…YOU survived.

And after months of just trying to keep you alive…it’s hard to make the transition to watching you thrive.

But…I’m here.  I’ve finally caught up to you.

I’m sorry it took me so long to get here.

Because your next heart surgery is inevitable…you have to have it.  The time will pass to that time…and instead of sitting around and waiting for that storm…I’m ready to dance with you in the rain.  I’m done watching you, your sister and Daddy laugh…I’m ready to laugh with you…live with you.

 

Love, Mama (proud mom to Evan – heart warrior, repaired “wide smile”, 100% oral – food, drink and medications, saying and signing over 15 words, and so much more!)

Evan may2013 from Czarina Hounsel on Vimeo.

 

 

 

 

 

Sometimes I want to throw my head in the garbage.

It’s been forever since I’ve written.

It hasn’t been intentional…I just needed a breather from my life and I needed a moment to enjoy the privacy that often I dismiss when I publish my daily dealings and stories of Evan.

His cleft surgery was a success.  He looks amazing.  His beautiful face is more spectacular than before….I wake every morning to the face God always intended me to love.  For whatever reason…He needed us to take a journey to get there.

Perfection.

Evan stopped breathing twice during recovery.  Only an hour after he was done from the 8 hour surgery for his face and mouth, he suddenly stopped breathing.  We were in the Cardiac Intensive Care Unit, Craig and I stood bedside as we oohed and ahhed over our boys’ new face, and suddenly the monitors beeped…and didn’t stop.

His oxygen dropped down to zero.

A flat line appeared on the screen where his breathing rhythm should have been.

His room flooded with doctors, nurses…Craig stood by yelling at Evan to breathe.  I stood in the hall sobbing…unable to breathe as well.

A terrible reaction to the pain meds caused my boy to stop breathing.

And it happens again…only an hour later…

Well…

It’s all too much.   I wasn’t ready to recount that moment until now.

We recovered at home and during our recovery period of 4 weeks, our house was plagued with stomach flu that hit my daughter and Evan and me.

Evan’s case was much more severe due to his recovery from his surgery and required a trip to the emergency room.

After 3 weeks…we finally got to breathe.  Thinking our life was about to hit the upswing of normal I’ve been craving for months…

Then, I get a call from my sister, my best friend, that she has to have surgery.

Another storm…

I flew to be by her bedside as she endured surgery.  I gave my mom a hug as she sent her child off to surgery.  We waited anxiously for days waiting for the pathology report to let us know it wasn’t cancer.

I was prepared to write about Evan’s great report from his plastic surgeon.  His palate and lip had healed beautifully and for once in  my son’s life, “Everything went as planned.”

And then…Boston.

The city I fell in love with years ago…Faneuil Hall…Boston Commons…was attacked.

Days later…our neighbors in West, Texas suffered a tragedy of their own.

I couldn’t find it in me to write about anything.

I felt a little hollow…a lot hollow.

I went ahead in with my life.  Coffee filled mornings, sounds of little feet running with toys from room to another, little voices calling out Mama…every 5 minutes.

I’ve been doing my best to give my family normal and to give me some normal lately.  Now that we are, hopefully, at least a year out from a surgery (any surgery – cleft and heart), I’ve been doing what everyone else does on a daily basis.

Live.

But in this new life of normal, I realized my normal is punctuated with bits of abnormal.  It was almost easier with Evan a crooked smile to explain his shortcomings of why he’s not taking a bottle, eating like a normal kid…maybe people would think his face had something to do with the fact that he’s not walking and talking like a regular toddler.

And then…in this normal…I find my crazy is amplified.  Without the comfort blanket of having cardiology visits every few weeks or a specialist visit or a pediatrician visit around the corner…my heart mama neurosis is on overdrive.

It’s not unusual for an  hour to be filled with these thoughts:

– Evan ate a lot. Must be cardiac exhaustion.
– Evan didn’t eat enough. Must be heart failure.
– Evan doesn’t want to nap. Must be a sign of sensory processing disorder from all the surgeries.
– Evan took a good nap. Must be heart failure.
– Evan looks blue. Must be heart failure.
– Evan looks pink. Wonder if he’s overcirculating.
– Evan’s crying. Oh sh!t – don’t get dehydrated.
– Evan happily playing. He’s delayed – not walking, not talking…where is he at now on the Hawaii Developmental scale.

It’s exhausting…and I just want to throw my head in the garbage and play make believe that I live in the land of regular folks.

Where teething and visits to the doctor for shots are the biggest fear I have for my child.

Where outings outside my sanctuary called home aren’t met with apprehension and fear…just normal.

Where side ways glances at my little dude are for admiration and not inquisition.

It’s difficult balance I’m trying to achieve.

One where I long for normality…but one where I’m trying to find where the abnormal is my normal.

One where I need acknowledgement of my son’s hardships…the true and dire nature of his medical condition…but one where all I want is for the world to see him as nothing but a normal kid.

I update his Facebook prayer page with the latest milestone, a random picture of our goings on trying to give the perception that all is well in my world of Evan.  But at the same time, I long for prayers and positive thoughts for the next cardiology appointment (that’s 2 weeks away), for the next heart surgery (that could be less than a year away)…but those requests are just a reminder that our world isn’t like everyone elses.

And that’s all I want.

For our world to be filled with sunscreen and swim lessons, play dates and Playdoh, joy and tantrums…all things of the toddler world.

But, my mind is having a hard time letting go of the worries of the Heartland…the abnormal that is our normal….oxygen levels, pink or blue toes, breathing, eating, drinking, weight gain/loss…all things of the heart mom world.

It’s the worlds that are colliding in my pursuit.  Every worry of the Heartland mixing and mingling with the simplicity of everyday life.

It’s head spinning.  Mind boggling.  And sometimes…all I want to do is throw every thought, every worry, all of it…in the garbage and call it day.

And give my kid the gift he deserves…what he fought for…to just live.