Heart Happenings

Happy Sunday, friends!

Thank you for the prayers surrounding Ethan's check-up with his cardiologist on Friday.  Yet again, he was quite the model patient and I couldn't be more thankful for his patience and tolerance for all things medical.  As expected, Dr. I requested an echo and EKG, and he also interrogated Ethan's pacemaker.  We received stellar news across the board!

Ethan is now up to 34 pounds (!!) and stands just under 40 inches tall.  His oxygen and blood pressure readings were fantastic, and his resting heart rate is right where it should be.  Pre-echo, these were all great indicators that his heart is doing just fine.  Dr. I also noted that Ethan's murmur sounded much less "dramatic" than it did before the cath, and the echo backed up his findings! The max pressure gradient across the conduit was around 57 mmHG, which is up from the immediate post-cath pressure, but still OK.  Ethan's heart function continues to remain normal, even with the added pressure to the right ventricle, which is great news!

The pacemaker interrogation found that the battery in Ethan's pacemaker only has about a year and a half left before it will need to be changed.  We will be having some big conversations, and making some big decisions, between now and then - but we'll cross that bridge when we get there.  Right now, my boy is stable and healthy and that's where we're putting our focus.

We left with very strict instructions to ride Buzz Lightyear's Space Ranger Spin as many times possible and to not come back for another six months!

That, we can do.

In true fall fashion, we celebrated the good news at my and Ethan's first football game of the season.  Jeramie's brother is the head coach for a high school here in North Carolina and Ethan loves him some Vikings!

It was great to be there for a Viking WIN, and to see my brother-and-sister-in-law one last time before our first nephew (and Ethan's first cousin!) makes his debut.  Talk about a lot to celebrate!

Thanks for checking in - I hope y'all had a wonderful weekend!

The Power of Words

Today, I had the honor of meeting with a pediatric cardiologist at Duke who is highly involved with the fetal cardiology program there.  As you probably know, Ethan's heart defect was not diagnosed prenatally.  Recently I've had many conversations with many different people regarding that fact and today's meeting was the culmination of those.

To be quite honest, I walk a very fine line of being glad that Ethan's heart defect was not diagnosed while he was snug in my womb, yet fearing what could have happened if it hadn't been for that observant postpartum nurse.  Not once after Ethan's birth did I become resentful or bitter towards my OB, or towards the many doctors who didn't notice his defective heart.  We were told over and over again that Ethan's specific defects are difficult to find on ultrasound - which they are - and, when my baby was fighting for his life, I felt I had no choice but to accept that explanation and move towards mending what was broken.

But I still had questions.  I still wondered how it was missed and if there was anything I or my doctors should have - could have - done differently with my care.  I've often wondered about how those first few hours of Ethan's life, those moments when his heart began to fail him, have impacted him now - or if they have at all.  Mostly, though, I stood (still stand) firm in gratefulness as I thought about all those hours Jeramie and I were given to bond with him in our room, and the rapid manner in which Ethan began to receive care once it all hit the fan.  Because, there's no doubt about it - from the nurse who first noticed his blue lips, to the surgeon who labored over his open chest, to Dr. I who is second only to God in knowing the workings of my son's heart - Ethan has been one well-cared for boy.

Eventually, amidst the surgeries and appointments and therapies, those early questions were pushed to the back-burner and replaced with more time-sensitive ones - How much does he weigh today? Does his heart have an underlying rhythm? Is he developmentally on-track? We were so focused on the day-to-day medical questions that there seemed to be little room for wondering about what might have been.

However, after today, it is evident that my heart and mind had been hanging onto those questions for the past three and a half years.  And to hear the voice of an incredibly compassionate physician as he answered them all for me lifted a weight from my shoulders that I didn't even know existed.

As he walked me through the beginning of Ethan's life on "the outside", validating my emotions and reassuring my fears, I felt myself relax.  There was a healing power behind his words, emotionally speaking, and I found far greater understanding, medically speaking, about my boy's first few hours on this Earth.  Ten hours later, I am still in awe of how much I needed to have that conversation and how perfectly God ordained it.

The beginning of Ethan's story is not how Jeramie or I would have written it, given the chance, but God is continually bringing light out of darkness.  I'm excited about where today's conversation may lead and I pray I am honoring Him with these opportunities I'm given.  I told someone this morning that, as much as I should hate the hospital, I feel like I come alive when I'm there.  And, after today, the worries of the unknown have lost even more power.

Wordless Wednesday - The Georgia Edition

Big days ahead...

Ethan and I got back into Raleigh Sunday night, along with my mama and sister, after a long weekend in the Georgia mountains.  Last year's trip to Ohio, combined with this past weekend, officially makes Ethan the world's best traveler.

You know, in my completely unbiased Mom's Book of Records.

But, for real though.  I was so impressed with his ability to entertain himself - and maintain some excellent bladder control - while we were in the car.  We had a great time and, while it was a tad bit stressful managing Ethan without Jeramie's help for four days, I'd say it was a successful trip!

We're back into work/preschool mode this week, but we have some pretty big days coming up.  For starters, Ethan goes to see Dr. I on Friday.  The purpose of the appointment is two-fold.  One, Ethan's heart has barely even been listened to - let alone looked at - since his cath last month.  I'm sure that an echo will be on tap in order to check his right ventricular and conduit pressures and make sure the ballooned stent is still opened wide.  The second, and original, purpose of Friday's appointment is to do a pacemaker check, and general once-over, before our family heads out on a pretty spectacular vacation.

Where are we going, you ask?

Well  - we, along with some wonderful friends of ours, will be leaving on a jet plane next month and traveling to DISNEYWORLD! We've been talking about the trip for about seven months now, so for it to be right around the corner is more than exciting! Dr. I has given Ethan his medical blessing up to this point, so we're praying that Ethan's heart is just as healthy and strong as it was after the cath.  Prayers for an excellent report are greatly appreciated!

And, as far as big days go - who can forget that our local Heart Walk is taking place in just a couple weeks? If you're my Facebook friend, you've certainly gotten the memo! I am so proud of the way our team has gotten involved in our community this year and raised a good bit of money in the process! The support has been overwhelming and I'm convinced that loving-my-child-as-your-own should be its own love language.  There's still time to donate if you'd like - and, if not, we know that you still love us all the same.

Thanks for checking in and enjoy your days - however big or small they may seem!

Home away from home...

For 18 years, the beach was my home.

Some of my most prominent memories are back-dropped by the sand and waves - the first time I skipped school, the time Daddy's boat almost sunk (with us in it, nonetheless), teenage crushes and first dates - and my soul awakes at the smell of salty air.

When I left eastern North Carolina to go to college, it was easy to continue to refer to this heavenly place as "home".  I would go home every few weekends.  I talked about home.  I still felt very much connected to home.

But once I moved to Raleigh after graduation - and got engaged to, then married, Jeramie - calling the beach "home" became a little more difficult.  Slowly but surely, and as much as I didn't like it at first, Raleigh was becoming our home.

I specifically remember buying our first house - the house we live in today - and programing our new home phone number into my cell phone.  Up until that point, for as long as I'd had a cell phone, Mama and Daddy's number had always been listed as "Home".

I was in quite the predicatment.

There I sat, up to my ears in newly acquired debt, and I was most bothered by this change I needed to make in my phone.  Eventually, "Home" became "Mama and Daddy" and the number I would dial to hear Jeramie's voice on the other end became "Home".

While I love Raleigh now, and the life we're creating here, I very much miss the setting of my childhood.  When Ethan was born I was determined that he, too, would be a lover of all things "beach" and that even though it's no longer in my backyard, he would come to know this special place.

For various reasons, we hadn't been able to take Ethan to the beach in these first few years of his life. There were either health problems or financial problems or scheduling problems - but something always interfered with our plans.

Until Sunday.

We were already planning a trip to the coast to celebrate a very special friend of mine, and the stars aligned perfectly for me to introduce our boy to the ocean.

And what an introduction it was.

Watching Ethan explore everything the beach had to offer was magical. I know that sounds all "rainbows and unicorns", but there's really no other word that comes to mind. I wanted so badly for him to love it, and he did. And that did wonders for this Mama's soul.

I know this is going to shock you [sarcasm] - but I cried. Standing there, with my feet in the Atlantic Ocean, I watched Ethan run and jump and splash and fall in the water and I looked at Jeramie and said, "I'm about to ugly cry right here in the ocean." 

I held back the ugly, but I couldn't stop the tears.

My heart will always be at home on the beach and, as of Sunday, it has even more to love about such a special place.

Like father, like son.

Those seashells to decorate the sand castle? All Ethan's idea.

Kure Beach, North Carolina - September 16th, 2012

From the Mouth of my Babe - Volume 8

Let's lighten the mood around here, shall we?

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One of our local science museums has some awesome interactive exhibits.  Ethan and I took a trip there a few weeks ago and he was engrossed in one particular exhibit.  The goal was to observe the effect that washing your hands has on getting rid of germs.  With a little bit of lotion, a black-light, and some warm soapy water, kids can see their "germs" (the lotion) before and after washing their hands.  It really helped Ethan understand that our hands can be full of germs, even if we can't see them, and it has made the hand-washing battle much easier.

Fast-forward a few days later and I was talking to Ethan about what we should do together that week.  His response?

"Let's go to the museum so I can see how my germs are doing!"

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North Carolina has been blessed with some awesome weather lately, which led to a conversation with Ethan about the four seasons.  I was explaining the varying temperatures that come along with each season ... 

"Summer is hot, winter is cold.  Fall is cool..."

...when Ethan interrupted.

"No! Fall is NOT cool.  'Cause if I fall, I will hurt my elbow."

Needless to say, I stopped the seasons conversation and moved on to explaining words with multiple meanings!

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Ethan is a lover of all things creepy-crawly.  He will stop forty-eleven times between our house and the mailbox to watch bugs crawl on the sidewalk.  And if they crawl on him? Even better.  He takes great care not to hurt them - except for that one time when he made two worms out of one - and would much rather "put them back with their friends" than kill them. 

One day, he was playing in the playroom and got very quiet.  Soon after I noticed the silence he walked up to me with very sad eyes (and a very still bug in hand) and says,

"Did this bug got died?"

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Ethan, you sure do keep us laughing!

To read more of Ethan's funnies, click on the "From the Mouth of my Babe" sidebar button!

Yesterday.

I'm not gonna lie - yesterday was a rough one.  While I will always remember the events that took place on 9.11.01, this date gained new significance in my life two years ago.  There's not much more I can say that I haven't already said here and here - I still miss him like crazy and there are still mornings I wake up from a dream so real that I would swear he's still here.

Except that he's not.

The feelings of sadness actually started creeping in on Monday night and I spent most of yesterday morning on the verge of tears.  Around lunch time, I found myself minutes away from throwing up as I pulled into a local shopping center, which happened to be the location of a fatal shooting the day before.  Just the thought of seeing human blood on the asphalt brought back memories from the accident that I've not allowed myself to think about in a long time.  The Lord completely protected my heart and my mind, though, and gave me the opportunity to talk about Michael with a smile.

It felt good.

The tears eventually did come, as they always do, but God ordained the perfect group of people to put a smile on my face and to understand the sadness.  For that, I am thankful, and I pray that Michael's family felt the same.

For those of you who also find yourself grieving this week, whether it's a result of terrorist attacks or a car accident, I hope you'll feel loved and cared for as well.  A little bit of love goes a long, long way, doesn't it?

Last Call!

Good morning, y'all!

For those of you who have expressed interest in ordering a 2012 Team Ethan t-shirt, but haven't done so yet, you have four days left to place your order! The shirts are $12 each (sizes 2T-2XL are available) and a portion of the proceeds will go to the Triangle Heart Walk - Team Ethan.

Ordering is simple: leave a comment on this post, or e-mail me at joyemullis(at)gmail(dot)com, letting me know what size you would like.  I don't actually need any money until the end of this month, but the sooner you can send in a check, the better! Checks can be made out to me and I'll distribute the money between the printer and the AHA.

Easy peasey, as Ethan would say.

"Team Ethan" isn't just those who are able to walk with us in October.  It's everyone who has prayed with us, laughed with us, and encouraged us over the past three and a half years.  We're blessed to have you in our lives (near and far) and we'd be honored if you wore Ethan's name over your own heart!

Patience.

I was all set to publish a "From the Mouth of my Babe" post this afternoon, but it just didn't feel right.  While Ethan has been saying some pretty funny stuff lately, which I will post at some point, today just wasn't the day for sharing it.  I've always been pretty honest here on the ol' blog, and the day I make y'all think our lives are full of cute pictures and funny phrases will be the day I should just shut it down.

Because - truth is - I've been more frustrated with Ethan this week than I've been in a very long time and I'm trying hard to pinpoint the reason behind it all.  Although I can think of a few incidents that have triggered immense amounts of dismay, I can't quite see the big picture.

Is it the start of preschool and a new schedule? Is he not getting enough rest? Is it even about him? ... am I harboring some sort of bitter feelings over who-knows-what? Is there something floating around in my heart and mind that I haven't acknowledged and dealt with?

I have no idea.  I do know that I've never been a patient person.  Not "impatient" as in I-have-a-hard-time-waiting-for-things-to-happen, but more like I-have-an-extremely-low-tolerance-for-situations-that-don't-meet-my-expectations.  I guess you could say I have a bit of my Daddy's temper in me.  I've always known this about myself and I know it affects the way I interact with Ethan (and Jeramie).  That said, I've also been working hard on keeping that in check and treating him (them) with grace and respect.

But.

When my typically agreeable child negates every word that comes out of my mouth, and defies my words with his actions, it makes me crazy.  I can appreciate that he is trying to learn who he is apart from me.  He's experimenting with opinions and words - a learning process that is exciting, for sure, but baffling at the same time.  All of a sudden, I feel at a loss for how to parent this little human.

And in an instant - in one moment of not keeping my anger in check - I find myself raising my voice, then feeling immediate guilt for forever ruining my child's psyche.  It's like walking a tightrope - this parenting gig - and I've never really liked heights.

A while back, a friend of mine challenged a group of us girls to pinpoint a verse in the Bible that spoke truth into whatever struggle we were facing at the time.  Since I've always struggled with grace and patience, I found my way to Proverbs and this verse has been on my heart ever since:

"Slowness to anger makes for deep understanding;

a quick-tempered person stockpiles stupidity.

A sound mind makes for a robust body,

but runaway emotions corrode the bones."

-Proverbs 14:29-30 (The Message)

I want so badly to be that patient person - that mom, that wife, that friend.  I want Ethan to do the right things because he knows they're right - not because I yell at him when he acts wrongly.  I want him to understand the love that Jeramie and I have for him isn't based on how "good" or "bad" he is.  I want him to know respect because it's modeled for him on a daily basis.  Most of all, I want him to understand that grace and forgiveness is there for when we mess up.  Injecting all of that into the life of an illogical three year old feels daunting, though, doesn't it? This week, it has run me ragged - I feel worn down and drained.  

But.

I am looking forward to rest, to time with friends, to a date night with my main man - and I'm thanking God for His mercies that are new every morning, for His grace.

Lord knows I'd be even more of a mess without all of the above.

The First Day

Today went so, so well for my little man.  He was beyond excited about this morning's happenings and walked into his adorable classroom like he owned it.  Seeing how confident and comfortable he was gave me such a peaceful feeling about the whole thing.

Would you believe that I didn't even cry?! I was a little shocked that not a single tear left my eyes.  I tend to get just a little emotional about stuff like this and really thought I was in for it after Ethan tried on his book bag last night and left me crying in the kitchen.  But, nope.  Nada.

This morning, for me, was more about joy and gratitude - magnified.  Not that preschool is some rite of passage for every three and four year old out there, but - for us - it's a major milestone.  It says that, despite the odds, we have a very vibrant, friendly, curious boy on our hands who's ready for this next step.  Smiles abounded this morning.

I know this is going to be such a good thing for him - and me.  He'll make a few new friends and learn to listen to other adults.  I'll have to let go of the control I think I have over his heath and turn those anxieties over to the Lord.  Together, I think we'll both come out on top.

And, being in Target by myself at 10:00 in the morning wasn't too shabby, either.

How about a few more photos to document the day?

Ready!

Checking out the goods.

Getting straight to work play.

Now, this? This put a lump in my throat.  The first print we have of Ethan's left hand.

Here's to many more fun days ahead!

What he's been up to...

Celebrating. 

Jumping.

Flipping.

Reading.

Pretending.

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Life has been very "scheduled" lately.  I actually inhaled sharply at the sight of our Google calendar just a few days ago.  We've broken out of isolation - like whoa - since Ethan's cath, and I'm already ready for things to slow down a bit.  

Ethan starts preschool on Tuesday and I can feel a change coming.  The thought of him being gone two mornings a week has already changed the way I view my time with him.  I'm looking forward to this next step.  Excited for him.  Excited for me.  Ready for change.

More to come...