Tuesday, December 2, 2014

Reorienting.


reorient:
to change the focus or direction of
to adjust or align something in a new or different way

-------

I was on the phone with my best friend a couple of weeks ago, sharing with her how tired, frustrated, and annoyed I've been with motherhood these days. I'd hoped that a trip out-of-town with just Jeramie, Ethan, and me would give us the break and "fresh start" we were all desperate for, but Ethan proved to be even more difficult once he was out of the routines of our home.

"We just need a reset," I told her, with a few ideas already implemented, but not much energy left for figuring out the rest.

That following Sunday, our pastor was wrapping up a sermon series on the book of Job. Job has always intrigued me, especially after Jeramie and I took a hard look at our relationship with the Lord a few years ago. Our pastor made a few excellent observations that day, but my heart jumped when I heard him use the word "reorient".

To paraphrase part of his sermon: God used Job's suffering to turn a good man into a better man. He reoriented Job's heart and, in the midst of terrible circumstances and suffering, Job learned to praise the Lord.

Did y'all catch that? God reoriented Job's heart! He didn't just push some heavenly reset button, letting Job start all over on the same path, only to end up in the same prideful, arrogant place. God changed the direction of Job's attitude. He took Job from someone who justified himself rather than God, to someone who repented of his ignorance and prayed for the friends who brought him more suffering than comfort.

That Sunday, I was convicted that what our family really needed was to be reoriented, not reset, and that we could only do that by focusing on Jesus.  We needed to remove distractions, quiet our hearts, and seek his wisdom.

I wish I could tell you that our days have been filled with nothing but love and peace since the conversation with my friend and that Sunday's sermon, but I can't.  We're still struggling, but God is still working; we do not lose hope.

It is not a coincidence that all of this lines up with the Advent season. We are looking forward to celebrating Jesus' birth, and all the moments leading up to it, as well as the promise of salvation that comes with such an extraordinary gift.  We wait in expectation of what God will do as we focus on him, lay our burdens at his feet, and ask him to align our hearts with his.



Saturday, November 8, 2014

Next?

Over the past five years, it always seems that just as the dust begins to settle in one area of Ethan's care, we find ourselves turning our attention to another.  The day after his birth, after doctors had diagnosed his heart defect, I remember being in a room with one of the pediatric cardiology fellows and asking when we'd get to discuss all the other things that needed fixing on Ethan's tiny, beat-up body.

"We've got to take care of his heart first", he gently explained. "It will probably be a while before we can talk about everything else."

While I knew that to be true in my head (none of that other stuff really mattered if his heart wouldn't work), my less-than-logical side wanted every doctor in that hospital to be in the room with my son, fixing all that was broken.

Of course, y'all know the story.  Ethan's heart did work (even when it "shouldn't" have) and we eventually got the chance to address the other challenges he was facing.  The result of that was about a dozen surgeries and procedures before his second birthday and a lifetime of follow-up appointments with some of the smartest doctors in the country.

After the initial surgery on Ethan's arm, and the traumatic nerve repair that followed a few months later, his hand has been the least needy area of his care. We see his orthopedic surgeon once a year, take a few x-rays, and teach Ethan how to button his pants and put on socks in between visits. The possibility of future interventions have been just that -- in the future. It never occurred to me that, just three months after open-heart surgery, we could be talking about yet another surgery to increase the functionality of Ethan's left hand.

But we are.

At Ethan's yearly visit in October, his orthopedic surgeon noticed that Ethan has developed substantial muscle and range of motion in and around his left index finger (yes, the one that was partially amputated during the nerve repair). The surgeon said this is unheard of, based on the surgeries and trauma Ethan's left hand has been through, but was incredibly promising.  He began to brainstorm with us about all the possibilities this opened up for Ethan and referred us to another hand specialist/surgeon at Duke.

We met with that surgeon a few days ago and the ball is now rolling towards the direction of one more operating room. The idea is to rotate Ethan's left index finger into a thumb position, thereby giving him the ability to have a pincer grasp on his left hand.  This is only possible, however, if Ethan's hand has all-of-the-tendons in all the right places. A MRI would be the best way to find that out (but, pacemaker), so Ethan will be having an ultrasound of his hand on Friday to try to gain information that way. The results of that ultrasound will determine which surgical options we have, if any, and how to proceed.  We'll meet back with the surgeon the Tuesday before Thanksgiving to go over all of that, and hopefully head into the new year with a plan.

I'm not gonna lie. All of that put me in a bit of a funk after leaving the appointment. I was aggravated with scheduling appointments and shuffling commitments, nervous for what will come of all this, and sad that this is even Ethan's reality.

But, God.

He spoke truth into my ugly heart, comforted me, and reminded me that we're not going at this alone.  He hasn't left our side a single second since we stepped on this crazy train five and a half years ago, and His faithful, unrelenting love shows no signs of stopping anytime soon -- not anytime ever.  He has crafted every tendon, nerve, and artery in Ethan's body and knows him better than any surgeon at any hospital -- better than us, even.

Now, instead of feeling sad or fearful, I feel burdened.  I want Ethan to see that truth, too; I want him to experience it and know it and come back to it all throughout his life.  I want him to see a bum arm and a bad heart and see Jesus.  I want to see it that way, too; not just in hindsight, but in the moment. Instead of being annoyed with scheduling one more appointment, I want to see that appointment as an opportunity to say, "just look at what the Lord has done!" I want to use this season He has placed us in to display His glory, whether that's at the park watching Ethan climb ladders or sitting in an uncomfortable chair awaiting results of another surgery. It's a lot easier to say (and really easy to think) than to actually do, but I'm trusting that God will give me the grace I need in the moment to live my life in this way.

I'm also asking Him for clarity (is that our word of 2014, or what?!) as we move forward with these appointments. I made it very clear to the new surgeon that our goal for Ethan is functionality.  If Ethan's hand, as it is today, is at maximum functionality, then we have no desire to proceed with any other surgeries for cosmetic reasons -- that will be a decision Ethan can make when he is older.  However, if a future surgery can increase the function of his left hand and benefit the way he interacts with day-to-day life, then that is something we'll need to strongly consider.

So. We will see what the ultrasound shows next week and go from there. We're not sure what's next for our boy, but we would absolutely love your prayers for our family and Ethan's medical team as we enter into these appointments and conversations over the next few weeks.

(Is he the cutest x-ray patient you've ever seen, or what?!)



Wednesday, October 15, 2014

Catch-up.

You know what makes me smile? Google tells me that there are about thirty of you who faithfully come to this little ol' blog every single day to check-in on our family. Every single day! But for almost two months now, you've been coming over here, looking for an update, and finding none. Yet, you still keep checking and, while it probably seems silly to most, I'm so encouraged by that!

Truth is, I've missed writing here, too. Just about every single day I think to myself, "I really want to finish writing about Ethan's surgery." But then the dryer buzzes or the carpool line beckons or I fall asleep at 9:15, and contributing anything to this space gets pushed further and further down the mental list of things I'd like to do.

Today I'm determined to change that, even if it's just a few photos to show all the ways God is at work in our family right now.

Since my last post (and Ethan starting kindergarten)...


...we had our first post-op pool trip...


...we spent a weekend at the lake...


...Jeramie moved into a new position with his company...


...we started the training for our county's foster care program...


...we celebrated my daddy's 72nd birthday...


...Ethan had a check-up with Dr. I...


...we participated in our 5th Heart Walk...


...my daddy was unexpectedly admitted to the hospital for four days...


...and Ethan lost his third tooth!


How's that for an update?

That silly boy of ours is doing very well these days. He's loving kindergarten, making lots of new friends, and learning a lot about responsibility and self-control. All looked great at his check-up with Dr. I in September and he doesn't have to go back until March! We are very relieved to have the craziness of the summer behind us, and that experience only magnifies the significance of the milestones Ethan is reaching.  From swimming, to loosing teeth, to reading and writing, open-heart surgery makes us keenly aware that he's not granted a single second of those things.  The grace and mercy that has been poured out on our boy from his good and perfect Father is so humbling and encourages a constant attitude of thanksgiving!

While my daddy gave us quite a scare, just days after celebrating his birthday, he is doing much better now! Those details are for a whole other post (which I'll likely never write), but just know that you're never too old to change.  God is always in the business of redeeming and restoring, and the fact that my daddy is alive right now is just one sliver of evidence of that truth.


Jeramie and I are about halfway through our MAPP (Model Approach to Partnership in Parenting) training and we've really enjoyed the process so far! When we first said "yes" to adoption last August, I never thought God would lead us to foster care -- and, to be honest, I really didn't want him to! -- but he did, so here we are. While our deepest desire is to adopt from the foster care system, we are agreeing to open our home to those children who need a temporary, stable, loving environment, too. Will it be difficult? Absolutely.  Will it be more difficult for us, than for the children who are being shuffled from home to home? Probably not. Perspective makes all the difference.

The past couple of months have been a bit of a whirlwind, to say the least, but the Lord is sustaining us and providing for us and encouraging us all along the way! We are so thankful.

Have a happy week!



Thursday, August 28, 2014

Kindergarten.

If a picture is worth a thousand words, the following photos would speak of...


...excitement.
...grace.
...mercy.


...joy.
...love.


...courage.
...growth.


...healing.
...redemption.
...life.


For this child we have prayed, and the Lord has granted us what we asked of him!
-1 Samuel 1:27 
{paraphrased}


Sunday, August 24, 2014

Miracles.

Keeping up with the details of the past three weeks is like keeping up with the laundry we've accumulated during that time.  I jot down just enough to make sure I don't forget, and wash just enough to make sure we all have clean underwear, but anything more than that just isn't happening! At some point, I will share the specifics of Ethan's post-op stay, but the details of this past stay are begging to be shared first.

But, before I do that, let's catch up on the timeline of events:

Stay #1:
July 29th - cath -- admitted to Duke
July 30th - open-heart surgery
August 3rd - HOME for six days!

Stay #2:
August 9th - emergency department for post-op fever -- admitted to Duke
August 11th - diagnosed with PPS
August 13th - HOME for six days!

Stay #3:
August 19th - emergency department for swollen, tender belly, and fever -- admitted to Duke
August 20th - surgery consult to remove infected pacemaker
August 21st - HOME!

So, how did we go from a surgery consult one day to home the next, you ask? It's a very long story, but I assure you -- you're gonna want to keep reading!

A couple times throughout the morning of August 19th (Tuesday), Ethan complained of pain in his right side.  If he turned a certain way, coughed, or took a deep breath, he'd wince in pain and tell me his side hurt.  Each time he said so, I raised his shirt and inspected his incisions.  Nothing looked out of place, and Ethan continued on with normal activity. I thought nothing of it until the next time he complained.

Tuesday afternoon -- playing happily

Later that evening, right before dinner, Ethan was sitting on the couch and not feeling great.  He didn't want to eat, didn't want to move, didn't want to do anything other than sit and watch shows.  He didn't even want to tell us that he wasn't feeling well.  We finally got him to admit that he was in pain, and Jeramie went over to inspect again.  What he discovered was that the right side of Ethan's abdomen, where his pacemaker sits, was swollen and extremely tender.  He wasn't even able to stand up straight without being in obvious pain.

We knew right away something wasn't right, and within minutes I had talked to both his surgeon (who was out of town!) and the on-call fellow at Duke.  While I was on the phone, Jeramie noticed that Ethan also felt hot to the touch.  I was upstairs at that point, talking to the fellow, and when Jeramie came up to tell me that Ethan's fever had spiked to 102, we packed a bag and drove to Duke -- but not before praying that God would protect our son and ultimately be glorified in whatever was about to happen.

Sunset over Durham on our way to Duke

Ethan slept the entire way to the hospital and looked absolutely awful.  He felt miserable, too, and any movement involving his abdomen caused him to whimper in pain.  We gave him a dose of Tylenol before leaving the house, which was successful in bringing down his fever, but did little in the way of pain management.

We spent all of Tuesday night in the emergency department, running tests and looking for answers.  Any time anyone pressed on Ethan's belly, he would cry and push away their hand.  Labs and blood cultures were ordered, as well as chest and abdominal x-rays.  Around 11:15 p.m., the fellow came into our room in the ED and broke the news to us.  He had been on the phone with Duke's other pediatric cardiothoracic surgeon who, after hearing the fellow describe Ethan's condition, ordered that Ethan not eat or drink after midnight in preparation for surgery the next day.

We were devastated. It is a general consensus in the medical world that surgery to remove an infected pacemaker, treatment for the infection, and surgery to place a new device is one big, difficult mess. It means weeks in the hospital and comes with significant risks.  No one wanted this for our son, but we knew the infection had to leave his body somehow.

At that point, I sent the following text to our family and a few friends...

"Really can't believe I'm typing this.. Ethan will most likely be having surgery tomorrow to remove the pacemaker.  He'll then be temporarily paced externally while he receives IV antibiotics, then he'll go back in to have another generator placed.  We are sad and frustrated.  Things could change overnight and the surgeon may think otherwise once he examines Ethan in the morning.  A miracle would keep Ethan out of the OR."

...and Jeramie and I began fervently praying over Ethan. We prayed big, bold prayers with the expectation that God would answer them.  For me, it sounded something like this: "God, I know you can heal my son.  I know you can take all this mess away right now.  So, do it already and show this hospital who you are."  I can't describe the feeling in the room at that moment, but we knew we were standing on the edge of something huge.


Around 1:30 Wednesday morning, as Jeramie and Ethan were moving to a room on the floor, I headed home to pack a few more things.  When I got back to Duke a few hours later, Ethan was sleeping comfortably and I joined him while Jeramie "took watch".  Around 7:30 a.m., Ethan woke up needing to use the restroom. We helped him out of bed, noticing that he was moving more easily than he had been the night before.  As we helped him into the bathroom, I lifted his gown and stared wide-eyed at his non-swollen belly.  It was still tender at that point, but both he and his belly looked significantly better compared to the night before! Right away, Ethan asked to watch something on TV and we obliged, thrilled to see him feeling better. 

Not long after he had woken up, the surgical NP stopped by to examine Ethan. She was slightly confused, given that what she was seeing that morning didn't match up at all with the report from Tuesday night.  A few minutes into her exam, Dr. L (the surgeon) walked into the room.  He shook my hand, looked at Ethan, looked back at me, looked back at Ethan (sitting up happily in the bed) and said, "So, what's going on here?"  The next words out of his mouth, after looking Ethan over were,  

"I'm not taking this kid into the operating room today."

He went on to tell us that children with raging infections don't look like Ethan did that morning, and that he was expecting to see a very different child lying in the hospital bed. 


In order to find out what the team needed to treat, he ordered that Ethan stop receiving IV antibiotics (he had gotten one dose of two different antibiotics at that point), and that we stop giving him around-the-clock Motrin that had been prescribed for the PPS.  He explained that an infection that required surgical intervention would "declare itself" within a day or two and would be fighting to find its way "out". With Ethan's chest tube site and JP drain site not yet fully healed, the infection had ample opportunity to ooze -- something we hadn't seen at any point during Ethan's recovery.  Right before he left, he described himself as "underwhelmed" by the whole situation and assured us that was a very, very good thing.  I clapped my hands and told Ethan God had given us the miracle we prayed for.

No one could believe the difference Jeramie and I saw in Ethan from Tuesday night to Wednesday morning.  I told Dr. L it was literally "night and day".  At that point, the fellow was the only person from the medical team to have seen Ethan both times, and he was shocked and confused when he laid eyes on Ethan during rounds Wednesday morning.

Later that afternoon, Ethan was sent down to radiology for an abdominal ultrasound. Another possible cause of Tuesday night's symptoms was that Ethan had a hernia push through and cause his pacemaker to bulge.  We were warned that it would be difficult to diagnose a hernia in the fascia behind the abdominal muscles because of the pacemaker itself.  It would not be easily seen via ultrasound, but there were things Ethan could do (cough, crunch his abdomen, etc.) that could give the radiologist decent images.

Ethan was very cooperative throughout the ultrasound, thanks to a decreasingly tender tummy and Ativan.  He coughed, crunched, and stayed perfectly still while the sonographer scanned his abdomen and the radiologist watched over her shoulder.  They were able to rule out any issues with his appendix, noticed no fluid build-up or abscess, and saw no indication of Ethan having a hernia.  In other words, the findings were completely normal.  At one point during the scan, the radiologist was talking through the events of the past day with us and said,  

"Everything I see is totally normal. At this point, it must have been a hernia that you saw on Tuesday night because a pocket of infected fluid just isn't going to spontaneously disappear over night."

As I'm looking into the eyes of this intelligent man, listening to him search for natural causes and explanations, I look out the corner of my right eye and see Jeramie's head turn towards mine.  I smile as I continue to listen and, in that moment, I've never been more certain that we've witnessed a miracle.

Unfortunately, during Ethan's ultrasound, he spiked the highest fever to date in his recovery -- 102.8.  The phlebotomist came in to draw more blood for labs and cultures, and the fever persisted for a few hours.  We resisted fever reducer at first, because we wanted to see what his body would do on its own, but eventually gave him Tylenol around 8:30 that night. By 9:00 it was down to 99.5 and it remained normal for the reminder of the night.

Snuggles, Frozen, and BlowPops on Thursday morning

On rounds Thursday morning, we learned that even during Wednesday's fever spike, Ethan's blood work remained normal.  There were no markers for infection and the blood cultures from Tuesday night were still negative almost forty-eight hours later.  The team did note that one indicator of inflammation had increased during the fever, which was in-line with PPS.  They suggested that we stop the Motrin treatment completely, change over to steroids, and once again "squash the fly with a sledgehammer".  Thinking that they would want to monitor Ethan during the switch, I asked, "So, that means home... tomorrow?"  With smiles, the team looked at each other, looked at me, then said,  

"Nope. Today."

They went on to reiterate that the infection would have reappeared by that point if it was going to, and that with every passing day Ethan spent in the hospital, he only increased his chance of catching something else.  Given that he would be starting a high dose of Prednisone, which would compromise his immune system, they (and we!) wanted him out of there sooner than later. I grinned at them like a kid in a candy store, clapped my hands, happy-danced in the hallway, and declared God's glory among Ethan's medical team!

Now, I would be lying if I said I closed the door after rounds and had complete and total confidence that Ethan was fully healed.  Almost instantly after rounds, I began to doubt and fear.  Satan desperately wanted to rob us of the joy we were feeling in that moment and surely wanted to steal the Lord's glory.  I laid my head on Ethan's bed, confessed my lack of trust and belief, and worshiped in adoration of what God had done over those two days -- from negating the need for emergency surgery to safely sending us home.


So, what now? We have been home since Thursday evening and Ethan hasn't even come close to spiking another fever.  He is on Prednisone until tomorrow to treat the residual PPS and hasn't complained of side or belly pain a single time.  In fact, he did a handstand (a handstand! three weeks post-op!) on our couch last night during a family dance party and proudly declared, "And it didn't even hurt!"

What's interesting is that Ethan's discharge paperwork states that he was in the hospital for an "infection of the pacemaker pocket", but that we went home without treating said infection.  While he did receive those antibiotics overnight between Tuesday and Wednesday,  it's understood by everyone involved that two doses of medication don't have the power to wipe out an infection of that caliber -- but I know Someone who does.

We are in awe of our God.  We trust in his sovereignty and we are humbled that he saw fit to give us the miracle we begged him for.  During a week of so much hurt and loss in the world of heart defects, I don't pretend to understand why we got a "yes" while others got a heart-breaking "no". But I do know that the events of Tuesday and Wednesday have led me to a place of gratitude and humility, and is yet another spot on this journey where we can pause and confidently say,

"Look what the Lord did there."


Friday, August 15, 2014

Home (again).

Wow -- what a week.  After any major surgery that comes with a substantial recovery time, we know that readmission for any number of reasons is always a possibility.  Did I really think that we'd end up back at Duke, less than a week after leaving the first time, though? Nope. We are so tired, but so grateful to be back home.

Ethan was discharged (again) on Wednesday morning, after having stayed the exact number of days in the hospital as he did for post-op recovery.  Sadly (for all of us), a 48-hour infection rule-out turned into another four-day stay due to some dehydration issues.  After Monday's results, everyone expected we'd be out of there by Tuesday morning.  But, nope.  It was determined on rounds Tuesday that Ethan's fluid intake (and subsequent urine output) was uncomfortably low, so we earned ourselves another day's stay. At one point on Tuesday afternoon, I looked at Jeramie and sighed, "How did we do this for nine and a half weeks?" Of course, I know it's by the grace of God that we came home after those long two months, and that we brought our boy safely back home again after these two shorter (yet still stressful) stays.


But. The unexpected nature of this week's visit did something crazy to my typically calm hospital demeanor.  At one point in the early hours of Tuesday morning, after I had silenced Ethan's monitor alarm every fifteen minutes, I stood at the head of his bed and watched him sleep, but couldn't keep myself from wondering if he was going to go back into cardiac arrest.  The sounds from the monitor were the same, the "alarm fatigue" was the same, and I was looking at the face of the same healthy (or so we thought at the time) little boy.  In my illogical, sleep-deprived state-of-mind, the next step was that his heart would stop.  After a time of prayer, cussing at the monitor, and having an early morning visit from Dr. I (Ethan's primary cardiologist), I finally allowed the Lord to calm my heart and trust that Ethan truly was okay.  That incident put me on edge for the rest of the day, though, and finding out that we weren't going home that afternoon was a punch to the gut.

But, God.

He sustained us and showed us such goodness that, even during those dark moments, I knew we weren't fighting this alone. A few of my favorites...


-For all of Ethan's IV pokes and blood draws (three total) from Saturday night in the emergency department, until we were discharged on Wednesday, the nurses and phlebotomists were able to gain access on the first try.  This is unheard of for Ethan's previously tiny, easily-blown veins!
-When Ethan was admitted on Saturday night, he was taken to 5317 -- the very first room we lived in once he was healthy enough to leave the PCICU as a baby -- and Shannon was his nurse.  I wrote about Shannon back in April of 2009 .  God sent her to us then, and He sent her to us again on Saturday and Sunday nights.
-Dr. I was in the hospital just about every day of our stay.  I can't adequately explain just how the Lord uses him to comfort us, but he always stopped by at exactly the right times, always bringing just the right balance of doctor and friend.

...and there's even more than that.  Visits from friends, ice cream in the courtyard, "wishing" in Jesus' name at the coin fountain.  God not only took care of the medical details, but he gave us exactly what we needed emotionally, as well.  He is so great, and greatly to be praised!


So, now we're home and keeping a close eye out for any signs of infection.  As of Wednesday night, Ethan's blood cultures were still negative and his incisions continue to look better and better.  He is still spiking fevers anywhere from 100.5-102 degrees in the late afternoons, but Dr. J (Ethan's surgeon) assured me that this is all in line with PPS.  Ethan also wore a Holter monitor from Wednesday to Thursday, and we should have those results sometime next week.

We are praying that this is all behind us soon and that Ethan starts to feel the benefits of the surgery.  We would love to have your continued prayers for rest and recovery -- we are determined to end this summer healthy and happy, with some much needed "normal" family time!

Thank you (again) for your prayers and encouragement -- we love y'all!


Monday, August 11, 2014

Results.

Today has been a very (very!) long day.  Ethan slept well last night and managed to sleep-in until 8:15 this morning! We hit the ground running as soon as he woke-up, though.  By 10:00, I had met with the NP, Ethan had his blood drawn, and he was sent downstairs for an echo. Once we got back to our room, it seemed like every time I closed the door, someone else was knocking on it. Thankfully, Jeramie's mom came to visit and she and another friend entertained Ethan while I took a much needed shower.  The hospital life is far from glamorous.

During rounds, we learned that Ethan's labs looked better overall compared to Saturday night's numbers. This is very good news! He will have more blood drawn tomorrow and, as long as those numbers look better than today's, we should be able to go home -- praise the Lord! We also found out that the abdominal ultrasound looks fine, apart from some expected inflammation, and that nothing has grown on his blood cultures yet. Tonight will mark 48 hours of IV antibiotics, so I'm hopeful that whatever this is is on its way out.

So, what is it? Dr. J and Dr. I think it's a post-op syndrome known as post-pericardiotomy syndrome (PPS). Unfortunately, there's not a specific test that can prove this, but everything seems to point to it being the culprit.  The good news is that it's an inflammatory syndrome that's treated with ibuprofen (and possibly steroids). We'll learn more about that plan on rounds tomorrow.

Tonight, I am thanking God for a day of good news! Dr. I came and sat with me and Ethan for a bit this afternoon, and the Lord used him to provide a great deal of comfort to me.  There have been many moments like that scattered throughout this stay and I'll be sure to share those details soon. For now, know that God is good and we are thankful. Tired, but thankful.

Thank you for your continued prayers!

Sunday, August 10, 2014

We're back...

Hey friends. If you've been following along on Facebook, you know that Ethan has been running a low-grade fever since Thursday afternoon. He was seen by Dr. J in clinic on Friday and everything looked a-ok -- chest x-ray, labs, incisions all checked out just fine!

However, Ethan's fever spiked to 102 degrees yesterday afternoon and we brought him to the emergency department around 8:00 last night with bags packed.  They started an IV, drew labs and blood cultures, analyzed his urine and ordered an abdominal x-ray. We were brought to a room around 11:00 and we'll be here until at least Tuesday morning.

On rounds this morning, we learned that his CBC levels are elevated compared to Friday's levels, which is a bit unsettling, but that his abdominal x-ray and urine analysis looked okay. The plan is to let him rest today, get an abdominal ultrasound, and draw more labs tomorrow. The team is watching the cultures for any growth and he is on two different (and very strong) IV antibiotics, which he'll be on for at least 48 hours.

If tomorrow's labs look okay, and nothing has shown up on the cultures, we'll be able to go home Tuesday. If the labs are unchanged, or trending in the wrong direction, we'll be here for a week.

The concern is that there could be a possible infection on Ethan's pacemaker hardware, hence all the abdominal testing.  As the attending said this morning, we may be squashing a fly with a sledgehammer, but it's a considerably better plan than having to open him back up to clean out an infection that was allowed to run rampant.

Please pray for us. Ethan is actually excited about sleeping in the hospital again, but I can't say Jeramie and I are as thrilled. We covet your prayers and continue to be so encouraged by them!

Thursday, August 7, 2014

The Details -- Surgery Day

I know I must sound like a broken record, but it's mind-boggling for me to think that Ethan is now eight days post-op and we have been home for half of that.  I've spent a lot of time re-reading posts from Ethan's first couple months of life, and I stand amazed at what God has done -- then and now.

This blog, originally thought of as Ethan's 'baby book', has morphed into an Ebenezer of sorts.  It's where I go when I need to be reminded of God's faithfulness.  It's five years worth of stories and answers to prayers.  If you find yourself with extra time on your hands, I would encourage you to go read the posts from April and May of 2009.  Taste and see that the Lord is good!

I want to share the details of last week so that we'll have yet another reference point to which we can come back and say, "See what God did there?!"  It's also super helpful for me to document the medical details of Ethan's care, as they serve as puzzle pieces to the ever-growing picture of our son.  From the smallest to the biggest, we know that every moment I'm about to share was ordained by a gracious and loving God!

If the details interest you in the least, read on and celebrate with us! I'll break them up into a couple different posts, starting with his surgery day.


Wednesday, July 30th: Ethan was taken back to the operating room around 8:45 a.m.  He was happy and calm the entire morning and, with a fast-acting dose of Versed in his IV, he was wheeled down the hall with no issues whatsoever.  Me? I sobbed into Jeramie's chest for a solid three minutes before joining our family and friends in the waiting room.

We received updates every hour, beginning with the first incision at 10:30.  We had a slew of people waiting with us, for which I was incredibly grateful.  I would not want to go through something like this without the Lord and our family and friends!


It took quite a bit of time to get through the scar tissue, but by 12:30 p.m. Ethan was on bypass and Dr. J had begun the actual procedure. Replacing the conduit (which could be thought of as a 'reconstruction', but was technically considered a replacement) and replacing the pacemaker battery took considerably longer than we anticipated.  We prayed that Ethan wouldn't have any adverse effects from the prolonged bypass time and the Lord faithfully protected him! By 4:30, Ethan was off of bypass and Dr. J worked on closing his chest for the next hour or so (and did a fantastically, beautiful job, might I add!).

Ethan came out of the O.R. extubated (!!), with one (!!) chest tube, and with a JP drain to keep fluid from collecting in his old pacemaker site.  I caught a glimpse of his tube-free, pink face as the team wheeled him through the doors of the PCICU and, yes, I cried again. We met with Dr. J around 5:30 in the PCICU and learned that everything went as planned.  He was able to put an adult-sized 23 mm valve into the newly reconstructed conduit, which is now pre-stented and will set Ethan up for future interventions in the cath lab rather than the operating room.  He was also able to place Ethan's new pacemaker behind the abdominal muscles -- praise the Lord! In other words: best case scenario all around.

Dr. J left and we all gathered in the conference room for a sweet time of prayer.  Within minutes, we were called back to see our boy.

Unfortunately, Ethan had declined quite a bit after settling into the PCICU.  By the time Jeramie and I got to him (literally 20 minutes from him leaving the O.R.), he had desatted significantly (low 60s) and had to be bagged in order to increase his oxygen levels.  He was so heavily sedated and evidently felt no need to breathe on his own.

Even with the bag ventilation, Ethan's oxygen saturations were only getting up into the mid-70s.  He was quickly placed on BiPAP, which greatly increased his saturations, but there remained lots of talk about reintubating him.  I made it clear that I didn't think that needed to happen, based on issues we were having with the BiPAP mask not fitting correctly, and the Lord sent us an advocate by way of a respiratory therapist.  He convinced the NP to give Ethan a few more minutes on BiPAP before drawing another blood gas, then make a decision about retintubating.  Within 10 minutes, between the first blood draw and the second, Ethan's carbon dioxide levels dropped from the eighties to the fifties (their goal for him at that point was forty)!

Managing his pain throughout the night was difficult. Too much morphine and Ethan refused to breathe; not enough and he thrashed around in his bed. Jeramie and I were so weary from such a long day, and seeing Ethan in so much pain was more than we could bear.  Around 9:00, I had stepped out to eat something and was called back into the room by my sister shortly after.  Ethan was still wearing the mask at that point and crying hysterically underneath it.  He wanted me something fierce, and when I could finally make out his words, "I want you to come closer.", I flung down the side of the bed and draped my body over his.  In that moment, the only words I could pray were, "Lord, please."  Despite my attempts to fight it, the sobs overtook my body, but my convulsing shoulders calmed him into a peaceful sleep.


Ethan stayed on BiPAP until around midnight, once he was mad enough to rip it off and could prove to us that he didn't need it anymore. From that point forward, his team found the sweet spot of pain management and Ethan steadily improved. Jeramie and I took turns sleeping, each logging three hours of "rest", and I woke up Thursday morning to a much happier boy, thanking God for the day's new mercies.

...to be continued...

Tuesday, August 5, 2014

Home.

A mere four days after open-heart surgery, Ethan was discharged from Duke on Sunday afternoon, August 3rd. 'Surreal' doesn't even come close to explaining the feeling of coming home so soon, but it's a start.

We all knew it was time to go when Dr. J walked into Ethan's room on Sunday morning and, two seconds later, Ethan pointed his index finger at Jeramie and exclaimed, "Pull my finger, Daddy!" Dr. J had tears in his eyes from laughing so hard (or from the horrid smell that escaped my child's hind parts -- it's hard to tell), declared it a "top hospital experience", and later walked down to Thelo's room to share the laugh with them.  A few minutes later, in walked Dr. I who took one look at Ethan and asked, "So, are you ready to go home?"

We are in awe.  And exhausted.  And thankful.


Being home has been a bit crazier than I anticipated.  We were warned that Ethan would likely try to do too much, being in the comforts of his own home and all, and would tire easily.  They were right.  It has been a struggle convincing him to take it easy and relax.  I'm not sure what we would do without Netflix and an iPad!

Over the past couple of days, I've found myself getting anxious about his recovery.  I worry that he's doing too much too quickly; I worry that he's not getting better quickly enough.  I worry that he seems too tired; I worry that he's not getting enough rest.  It's hard to articulate, but I think I expected the surgery itself to be the hardest part.  Don't get me wrong; waiting and waiting and waiting for news from an operating room about your child's life is never easy, but I don't think I gave enough mental energy to the waiting involved in the recovery process.  I have to continually remind myself that Ethan had his chest cracked open less than a week ago and this wasn't all going to end when we walked out of the hospital.

All of this anxiety has been a constant reminder of my need to keep my eyes on Jesus.  It's a dance, this 'trusting in the Lord' thing.  When I look away for even a moment or two, I find myself tripping over worry and fear.  I am in continual need of the Lord's guidance and direction; without it, I'm a mess.  I happened to be reading in Isaiah yesterday morning and came to chapter 26, verses 3 and 4:

"You keep him in perfect peace whose mind is stayed on you, because he trusts in you.  
Trust in the Lord forever, for the Lord God is an everlasting rock." 

The promise of peace for a mind focused on the Lord, on a God who will not crumble or crack, brought me so much comfort. How awesome that God's word is living and active and relevant to a nervous mama even today!

We had a follow-up with Ethan's pediatrician yesterday afternoon and we're keeping a close eye on a small area of swelling between his sternal and pacemaker incisions.  No one seems concerned just yet and Dr. J will examine it thoroughly on Friday when we're back at Duke for Ethan's post-op appointment.

Please continue to pray for us.  As I'm learning this week, this is not 'over' and we still have a ways to go until our boy is fully back to his spunky self.  Please pray that Ethan's recovery would continue to remain infection-free and that he would grow stronger with each passing day. We are in awe of what God has done in the life of our son and we give Him glory for it all!


Thank you for praying with us and loving us well.

"For you are great and do wondrous things; you alone are God."
-Psalm 86:10
 

Saturday, August 2, 2014

Post-op, Day 3

Thank you, thank you, thank you for offering up prayers on Ethan's behalf after last night's post! I also received some very encouraging messages that helped to ease the anxiety I was feeling about Ethan's oxygen saturations and shoulder pain. On top of all that, we had good, separate conversations with both Dr. I and Dr. J today and neither of them are concerned about either issue.  It seems I just needed to turn that over to the Lord and give Ethan some time.

Ethan was wheeled down to radiology first thing this morning for a chest x-ray.  It looked pretty good for three days post-op, but there is still a small area of 'wetness' that we'd like to see resolve.  Between chest PT, walking, and Lasix, we're confident that this will clear up fairly soon.  He'll have another x-ray tomorrow morning and we'll go from there.  However, even with the wetness, Ethan maintained oxygen saturations in the mid-to-high nineties all day! I watched those blue numbers on his monitor just about all day long, with wonder in my eyes and gratitude in my heart.

As far as the shoulder pain goes, he only complained about it once or twice.  He seemed pretty sore, in general, today so we're trying to stay on top of the pain before it really bothers him.  (By "stay on top of the pain", I mean regular Motrin every 4-6 hours. Children's Motrin! Three days after heart surgery! Kids are crazy strong.)  As God heals his body with each passing day, we're hopeful that these kinks will work themselves out and resolve completely.

Ethan has seemed the most like himself today and I am so thankful.  Believe it or not, we had to stop the kid from running (RUNNING!) during one of our walks today.  Waiting hours on end for your child to come out of open-heart surgery is stressful.  Keeping them from breaking into a jog three days after said surgery is a whole other kind of stress, but I'll take it!

I don't have any specific requests for Ethan tonight, but will you please pray for our heart buddy Thelo? His mom, Lori, and I met a few months ago at a meeting organized through Duke and we have become fast friends.  It just so happened (thanks, God) that we ended up at the hospital together with our boys, even sharing the same room in the PCICU for a night.  It has been such a sweet gift having her around, but of course this means that she's there for her own child, too.  Thelo has been struggling with his oxygen levels, and has spiked a fever over the past twenty-four hours.  His little body has endured a lot over the past week and the weariness is setting in.  Will you please pray for Thelo and Lori? Pray for endurance and peace, strength and patience.  Pray for wisdom for Thelo's medical team.  Pray comfort and for rest.

Thank you for your love, your encouragement, and your prayers.  We love y'all!

Friday, August 1, 2014

Rockstar.

So, here's the deal: Ethan is a total rockstar.  This has been the one word, used multiple times, by multiple members of Ethan's medical team to describe him up to this point.  The resilience that boy has shown over the past forty-eight hours is mind-blowing.

Mama getting six hours of sleep in said forty-eight hours is something special, too, so (once again) this is going to be a quick one.  For those of you wanting all the details (I know you're out there!), they'll come eventually.  Right now, I just want everyone reading this to know one thing:

God is good.

Of course, it's easy for me to say that as I watch Ethan, two days after intense, complicated open-heart surgery climb in and out of his bed and walk laps around the nurses' station.  But the truth of His goodness was also what I clung to while I stroked Ethan's head during hallucinations and laid myself over his beat-up body as his oxygen dropped and he was too drugged to breathe.  Through the highest of highs and lowest of lows over these past two days, the Lord is the one thing that remained constant.  His goodness and faithfulness do not fail, and I am thanking Him for that tonight.

The surgery on Wednesday was a complete success. It took much longer than we anticipated, but Dr. J did some amazing work in our boy's body.  Ethan had an echo this afternoon, so we'll hear more tomorrow about how everything looks postoperatively.  If his activity level is any indication, everything is going to look just fine!

We do have two specific concerns that we'd love for you to pray with us about.  In a way that can only be ordained by a God who cares about the details, Ethan's cardiologist, Dr. I, is on service this weekend.  He knows Ethan better than anyone at Duke and I'm confident that, with the Lord's guidance, we'll work together to get some answers over the next day or so.

#1 -- Ethan's left shoulder.  Since yesterday afternoon, Ethan has been complaining about pain in his left shoulder area.  We thought this was directly related to the chest tube, but he experienced pain in the same spot this evening, hours after the chest tube had been pulled.  It very well could be residual pain from all the trauma of surgery and the tube, but I feel uneasy about it all. Would you pray that Ethan would have relief from this pain, and that we can come to wise conclusion about what could be causing it?

#2 -- Oxygen saturations.  Ethan is still requiring a bit of oxygen to keep his saturations in the normal range. So far, we've been able to keep them 'acceptable' with some oxygen blowing towards his face from a tube, but he did require a nasal cannula earlier this afternoon.  His saturations should be improving as he becomes more active and releases more and more fluid, but we're not seeing the jump like we thought we would.  He'll have a chest x-ray in the morning to check on his lungs and we'll go from there.  Please pray that Ethan will be able to tolerate increased activity tomorrow without the need for extra support.

We are overwhelmed by the love and support we've received this week! We have read every message and listened to every voicemail.  Even though we haven't been able to return all of your messages, I hope you know how much we are encouraged by them -- THANK YOU!

Tuesday, July 29, 2014

Cath update.

Thank you for all the prayers, texts, calls, e-mails, and social media love today! We've read every single message that's come our way and we've been carried by your prayers and encouragement.

This will be another quick update tonight, as we have a very early morning and a very long day ahead of us tomorrow.  The cath today went wonderfully! It started much later than we hoped -- Ethan didn't go back into the cath lab until 1:00 -- but it was relatively quick and Ethan recovered well! He didn't complain a single time about being hungry while we waited and was in great spirits even as he fell asleep on the table.  Praise the Lord!

Dr. F was able to get some great images of Ethan's heart, which gave Dr. J (Ethan's new cardiac surgeon) a lot of good information for tomorrow's surgery.  Today's cath was even further confirmation that it's time to do this, and we're ready.  We also learned that Ethan's right and left pulmonary arteries have grown substantially over the past few years and are now considered "normal" for his age/size!

So, tomorrow.  Ethan will head into the operating room sometime around 8:00 in the morning.  It's going to be difficult to put him through that again, so we ask that you would pray for peace and calmness as we send him into the O.R.  The surgery will last most of the morning and will hopefully be over by early afternoon.  We learned today that Dr. J will not be replacing the conduit in its entirety, but will be "splicing it" and adding a bovine pericardium patch to increase its size, along with a whoppin' 23 mm valve.  This will set Ethan up beautifully for future procedures and give his team much more flexibility with how to treat future valve issues (even avoiding the OR altogether). 

How to pray:

-REST -- Jeramie is bunking with Ethan at the hospital tonight and I'm staying at a nearby hotel.  We all need really good sleep tonight and, as of 10:40, Ethan still wasn't asleep.  If you're still up and reading this, please pray specifically that we would wake up tomorrow well-rested!

-Dr. J and his team -- We are thoroughly impressed with the care Ethan is receiving and ask that you would pray for the hands that will be working on his heart tomorrow.  We pray for wisdom, clarity, and skillfulness for everyone who will be involved with Ethan's case.

-No complications -- The consent forms we signed today would make just about anyone queasy, and Dr. J was very honest about all the things that could go wrong.  We know the risks, but we also know that Ethan needs this.  It's a tough place to be as a parent, so we're fervently praying that all will go smoothly and without complication, and that Ethan will walk out of Duke healthier than he was when he walked in.

Thank you for loving us well and carrying this burden with us through your prayers! We love y'all!

Monday, July 28, 2014

Cath details.

Hey friends.  It's almost 9:00 p.m. on the night before we head to Duke.  The productive day of packing I had in mind when I woke up this morning didn't even come close to happening, so I'm going to make this short and sweet.

We are scheduled to check-in at 9:00 tomorrow morning, and hopefully Ethan will head into the cath lab sometime around 10:00-10:30.  It shouldn't be a long procedure, as they're mainly getting information for the surgeon.  As it stands now, they do not plan to intervene.

Ethan will recover in the PACU (post-anesthesia care unit), then be moved to a room on the floor.  We'll meet with the surgical team at some point tomorrow morning and go over details for the surgery on Wednesday.  I will be sure to post those here once we know them!

Specific prayer requests for tomorrow:

-distraction from hunger -- Ethan will not be able to eat after midnight tonight and can't have anything to drink after 7:00 tomorrow morning.  Thankfully, he doesn't wake up ready to eat, so we're praying we can easily distract him while we wait.  We'd love for you to join us in praying that prayer, too!

-a smooth procedure -- From starting to time, to easy cath access, to no complications during the cath, we'd love for you to pray that all goes smoothly.  Pray for Dr. F (our new cath doc) and his team, as well as the nurses who will be taking care of Ethan after the cath.

-recovery -- In past experiences with anesthesia, Ethan has always come out of it happy and mostly alert.  Please pray that the same holds true for tomorrow! Also pray that the cath site would heal quickly with no infection

Above all, pray that God is glorified through the events of tomorrow and the week to come. He is so good and worthy of our praise!

We love y'all!


Sunday, July 20, 2014

Now and then.

This weekend has been a weepy one, friends. I've taken two pregnancy tests over the past three days, because surely being 'with child' is the only reasonable explanation to the range of emotions I've felt since Friday.  But, nope.  As it turns out, being less than two weeks away from sending your child into another operating room can explain it, too.  Add to that the feeling of being 'on hold' as we wait for the big day, and those pregnancy-related emotions start to pale in comparison. (P.S. - I'm not pregnant.)

Ethan and I stayed home this weekend while Jeramie attended a surprise party for his grandma's 80th birthday.  As much as I wanted us to be there, I knew that exposing Ethan to a large crowd of people this close to surgery wouldn't be a wise decision; so, at home we stayed.  I was okay with it on Friday, but by Saturday afternoon I was a mess.  In fact, by 11:30 that morning, both Ethan and I had already cried about not being there. Y'all, you don't know tears until you see your five-year-old's chin start to quiver and hear him ask, defeated, "Did MawMaw not invite me to her party?"

I held him in a long hug, assured him that of course she did, and we had yet another conversation about surgery and pain and hospitals and conduits.  We wiped our tears, then I began to frantically think of ways to make it better -- "We'll make our own birthday cake!" ... "We'll face-time during the surprise!" ... "We'll make the most of it!", I told him.  I even put on make-up for the first time in more than a handful of days.

But, the truth is, we're faced with a problem we can't fix.  It's not that we had to miss out on time with family, although that is incredibly disappointing.  The real problem is that we have to take our son to a hospital, lay him down on an operating table, and wait for hours on end while a surgeon saws through the bone in his chest to expose a heart in need of intervention. No amount of frosting or technology or mascara can fix that.

There have been a few times over the past couple of weeks where Jeramie and I have found ourselves at this place of realization.  "The problem", I'll say, "is that our five-year-old needs open heart surgery."  This just isn't the way it's supposed to be, and something deep in my soul wants to fight it with every breath.  During times like those, I find myself groaning in my tent, longing for our heavenly dwelling* -- not just for a better now, but for His promise of a better then.  Then.  When I'm face-to-face with Jesus, worshiping at His feet.  When babies don't die and kids don't need open-heart surgery.  When tears don't fall.  When there's nothing but joy and adoration in the presence of our Savior and King. Then.

But, this is now.  Sin-filled, sad, scary now.  Even on its best days, now cannot compare to what will be then.  Knowing that, I've been so encouraged recently by a friend of mine about now.  We both have babies with needy hearts, we both love Jesus, and we both desire to make Him known to the world. On more than one occasion, I've heard her refer to her son's time in the hospital as an opportunity to share the Gospel with someone, and I was blown away the very first time she said it. But as we approach this next surgery, the Lord has used her to show me that the halls of the hospital are every bit a 'mission field' as the villages in India.  Through Jesus, our family is able to approach this uncertain time with hope and confidence in someone greater than an earthly surgeon. Why wouldn't I want to share that with the scared mama sitting beside me in the waiting room?

Now, and then.  For me, it is a daily struggle to reconcile the two. It is so easy to want the best of both worlds -- to want the better now AND the better then.  But now is messy.  Now leaves me aching for then. 

"For now we see in a mirror dimly, but then face to face. 
Now I know in part; then I shall know fully, even as I have been fully known."
-1 Corinthians 13:12

Lord, help me to live now in light of what will be then.

- - - - - - -
*2 Corinthians 5:2, paraphrased

Saturday, July 12, 2014

Here's how.

Without a doubt, the most popular question Jeramie and I have been asked over the past five years is, "How can I help?" On the day Ethan was born and we learned about his heart defect, our family and friends immediately sprang into action, even when we didn't know the answer to their question.

We have been loved very well, and in many different ways, over the years. I'm convinced that in a moment of crisis, a powerful desire wells up in each of us to respond and do something.  For a lot of people, though, figuring out exactly what to do can be a challenge.

"So, how can I help?"

Now that Ethan's next surgery is on the horizon, we've been asked this question daily. Our experience has taught us how to respond to others during their times of need and I've compiled a list of our most favorite gestures. My hope is that this list will help you answer that question -- as it pertains to our specific situation, or to any other medical crisis your loved ones may be facing.

1.  Prayers -- For our family, these are cries to the God of the Bible, in the name of His son, Jesus -- our redeemer and our rescuer.  Hearing that others are praying for our son -- our family -- is one of the most beautiful things I've experienced on this journey.  People stopping to pray with us, right where we are at that moment, is incredibly powerful.  I realize not everyone reading this trusts in the same God we do (or, any god for that matter), but if you tell someone you're going to pray for them, do it.

2.  Encouragement -- While not everyone will identify with God or prayer, anyone can be an encouragement to their friend or family member.  I cannot tell you how many times a simple note has shown up at just the right time and lifted our spirits.  It doesn't seem like a lot, but trust that that hug you want to give or that card you want to send will be much appreciated by its recipient.

The first of many handmade cards Ethan received during his hospital stay!

3.  Company -- If joking is appropriate in a stressful hospital environment (it can be!), then I can say that our entourage was often the joke of the waiting room.  We were never without company, and that is one of the fondest memories I have of Ethan's first hospital stay.  Of course, you'll need to clear this with your friend to ensure that there are no restrictions and that it's a good time to visit (some times just aren't), but a friendly face is wonderful medicine to a weary soul.  Even on the terrible days when I didn't want to speak a word, we had friends and family who sat with us in silence.  Not everyone is comfortable in the hospital setting, for various reasons, but if you can put on your brave face and spend some time with your friend, do it.

Waiting during Ethan's first open-heart surgery. This clown was annoyingly funny at just the right time.

4.  Food -- Anyone who has eaten in a hospital cafeteria for more than a day will tell you that food from "the outside" is like water in a dry land. We were lucky in that our family and friends were usually no more than a 35-minute drive from the hospital, and they burned some rubber on I-40 to bring us home-cooked meals! If you're not within food-delivery-distance, consider sending a gift card to a nearby restaurant.  Waiting-room-friendly snacks are also a big hit!

5.  Gas and Parking -- One would be amazed at how much driving back and forth to the hospital, and paying to park in their decks, can cost! Depending on the family's sleeping arrangements, family members may have to drive long distances to visit their loved one.  Jeramie and I were fortunate enough to have friends and family pay for housing for us at a nearby hotel, and even those 10-minute trips added up quickly.  Gas cards are a wonderful gift for someone making frequent trips to and from a hospital! Also, check with the hospital to see if they offer discounted parking passes.  Duke does this for their patients and it was a huge relief to hand the attendant a pre-purchased pass instead of our debit card!

6.  Household chores -- For a family facing an extended hospital stay, not having to worry about mundane household stuff is a huge relief! During the nine-and-a-half weeks we were at Duke with Ethan, we had friends wash our clothes, feed our then-cat, water our then-plant, and check our mail.  If your friends are far away from their home at their loved one's medical center, helping take care of their house is a must-do for them! Once they return back home (whether from a short or extended stay), a scheduled rotation of meals is extremely helpful for easing back into home-life.

A sweet home-coming after a long hospital stay.

7.  Gifts -- On the day Ethan was born, before we ever knew about his heart defect, he received the most precious stuffed monkey.  It went with us to Duke and quickly became a staple in this journey.  To this day, Ethan adores that monkey and you better believe it'll be with him during this next surgery! Gifts don't have to be elaborate (see #2); the smallest token of thoughtfulness can be such a day-brightener for a patient, young or old. You could also consider giving a gift to the caregivers. Extra-moisturizing lotion (to combat dry hospital air and lots of hand-washing) and a Starbucks gift card (to combat sleep deprivation) would be great additions to any care package!

A handful of gifts Ethan received during his first week of life.

For those facing long nights and days in a hospital, whether as a patient or a caregiver, a simple act of kindness goes a very long way. For those of you who have found yourself by a loved one's bedside day after day, what else would you add to this list?

Friday, July 4, 2014

Tension.


"Do not be anxious about anything, 
but in everything by prayer and supplication with thanksgiving 
let your requests be made known to God. 
And the peace of God, which surpasses all understanding, 
will guard your hearts and your minds in Christ Jesus."
-Philippians 4:6-7

Ever since I can remember, I've been an anxious person. Growing up on the coast of North Carolina, storms were a way of life during the summer and I would spend hours (hours!) watching the weather forecast for a hint of what might happen, while completely missing the beautiful day that was happening. I was always fixated on the future and, more specifically, what would go wrong in said future.  There were multiple times throughout my childhood that I asked my Daddy when he would die, and I often worried about my own exit out of this world. I probably needed therapy much sooner than I actually got it!

As a teenager in youth group, Philippians 4:6-7 was one of the first verses I memorized in hopes of combating this chronic worry and anxiety.  My Bible was filled with quotes from youth camp pastors about trusting God -- the good, gracious God I had surrendered my life to years prior.  Trusting Him amidst the unknown has been, and still is, my greatest struggle when it comes to my faith.

On the flight to India, I whispered the words of those two verses over and over and over and over to myself.  I clung tight to the promise at the end, and God was faithful.  I know that His peace cleared my mind to experience and accomplish all that He wanted for me and His kingdom once I stepped off that plane.

Last week, the sermon at church was on this passage, and God's timing with that message was on point (as always!).  We had just gotten the news from Ethan's cardiology visit days prior and were literally waiting for our phone to ring and guide us into our next steps.  I needed that reminder as I answered the phone a few days later.

If you remember the options from my previous post, the Lord has given us mounds of clarity that Option C is the path to take.  For Ethan, this means that his pacemaker battery and his conduit will both be replaced in the operating room.  It's the big one and, as of yesterday, we have a date on the calendar.

On July 29th, we'll take Ethan to Duke for pre-op testing and a diagnostic cath.  He'll be admitted to the hospital after the cath and he'll go into the operating room the following day, July 30th.


I got the call while Ethan and I were staying with some dear friends of ours, who have also traveled down this road.  After hanging up with the scheduler, I burst into tears while standing in their dining room.  The mama hugged me, knowing the weight of "the date", and the realness of it all made me so sad. Over the past 24 hours, I've put Philippians 4:6-7 on repeat in my stream of consciousnesses, but today I'm just sad.

It occurs to me, though, that maybe sadness and the peace that surpasses all understanding can co-exist.  I can be sad because I know this isn't how it's supposed to be, but capital-P peace comes from placing my hope in someone not of this sinful world.  I can find peace through Jesus, knowing that He holds each minute of July 30th in His hands, and I can also be sad that those moments have to occur in the first place. This tension is the place where faith grows.

So, will you pray with us, friends? Specifically that we would all stay healthy between now and July 29th, and that Jeramie and I would make wise decisions in preparing Ethan for what's about to happen.  I can't say that I'm excited to lay my child onto another operating table, but with every passing day I can see how much his body needs this. It's because of our greater hope that we press on through the sadness, believing in the Lord's goodness and trusting in His plan for Ethan's life. I am making my requests known to God and resting in His promise, while shedding tears along the way.

"In the morning, O Lord, you hear my voice; 
in the morning I lay my requests before you and wait in expectation."
-Psalm 5:3


Tuesday, June 24, 2014

Eight.

Over the past eight years, Jeramie and I have often celebrated our wedding anniversary in some not-so-traditional ways.  On our third anniversary, we were in the midst of a huge fight and had just brought Ethan home for the first time a few weeks prior (hello, stress).  Last year, on our seventh, Jeramie's car died on his way to work, and today, we spent a portion of our eighth anniversary with Ethan's cardiologist. You don't have to look far to see that these eight years have been marked more by grace than by glamor.


I can't say that this is how I envisioned our life -- our family -- on June 24, 2006, but that just makes me all the more thankful that it didn't turn out the way I wanted.  Without the trials we've endured together, I don't think I would understand joy, grace, love, and compassion the way I do today; the way I love my husband and follow my Savior looks drastically different than it did eight years ago.

Of course, those difficult times have been brightened by happier ones.  Just today, those couple of hours we spent with Dr. I were sandwiched between family pool time and a date night at a new-to-us restaurant.  Even on days we don't get the news we wanted, God is good and our life is so incredibly rich.


Leading up to today's appointment, I knew in my gut that something wasn't quite right.  Ethan has become increasingly tired with activity and often tells us that his "heart is tired".  Sure enough, the echo proved my suspicions and we've found ourselves at "go-time".

The pressure gradient across Ethan's conduit has gone from 50ish mmHG in March to 70ish today; normal is below 20. We are praising God that his heart function hasn't been impacted by this rise in pressure, but intervention is necessary to keep that from happening.


The short story is that Ethan will be going into the cath lab "much sooner than later" to address this issue.  We don't know when, but I'll be sure to update here once we have a date on the calendar.

The long story is that, in addition to the pressure in the conduit needing to be addressed, Ethan's pacemaker has about seven months of battery life left.  How those two facts intertwine has the potential to get complicated and muddy, but we are praying for clarity.

Here are a few of the possibilities:

A - The conduit can be ballooned or stented to relieve the pressure AND the pacemaker battery can be replaced in the cath lab.  This is best case as it keeps Ethan out of the operating room for a while longer and addresses both concerns at once.

B - The conduit can be ballooned or stented in the cath lab, but the pacemaker battery will be replaced in the operating room five to six months later.

C - The conduit can't be ballooned or stented in the cath lab and will need to be surgically replaced.  If that is the case, Ethan will likely stay in the hospital after his cath and have the surgery within a couple of days.  His pacemaker would also be replaced at that point.

There are also many variables that play into each of those scenarios but, again, we're praying that God would make the course of treatment clear and direct.  Would you pray specifically for that, as well? If that means an interventional cath isn't possible, and we go with "Option C", then I will be as okay with that as any human mother can be. And, of course, there's always the possibility that God will do immeasurably more than we ask of Him and blow A through C out of the water.  He's done it before!

While we wait to see how all of this will play out, will you be praying with us? Here are some specific things you can pray for over the next few days:

-continued health of Ethan's heart and body
-ease and quickness of scheduling the cath
-wisdom for the cardiology team in their decision-making
-peace for Jeramie and myself as we wait
-continued protection against worry and anxiety for Ethan
-trust in God's plan and His timing


This part of the journey brings about many opportunities to get tripped up on some rocks and become easily discouraged.  We appreciate your encouragement and prayers as we navigate another tricky path and continue to look to Jesus, who already has all this figured out anyway.

Because your steadfast love is better than life,
my lips will praise you.
So I will bless you as long as I live;
in your name I will lift up my hands.
-Psalm 63:3-4


Tuesday, June 3, 2014

Graduate.

A couple of weeks ago, Ethan graduated from preschool.


I sat on the edge of my seat through most of the ceremony, wondering how he would do.  He barely sang a single note of any song, but he did stay in his spot on the stage for the entire program.  That, my friends, is a smashing success in our book! Between inheriting his daddy's attention span and his mama's shyness, I don't think we have a performer on our hands!


My favorite part of the whole morning was after his class marched in and found their places on the stage.  The entire time, Ethan was intently studying the faces in the crowd, searching for us.  We were in the very back of the sanctuary and you would have thought we were waving down Jesus himself.  I willed Ethan to look in our direction, towards our flailing arms and gigantic grins, and when he finally found us he flashed the most precious, relieved smile, paired with the sweetest wave you've ever seen.

And, yes.  I cried.


Now, I'll be the first to admit -- the preschool graduation is a bit of a silly event.  The pint-sized caps and gowns are a bit excessive -- and what am I really going to do with a preschool "diploma"? But I would flail my arms and pose for pictures and remind Ethan of just how proud I am all over again simply because it all reminds me...

Every breath that child takes, every inch he grows, every milestone he reaches reminds me that God is good and faithful and worthy of our praise.  Had you interviewed doctors on the night Ethan coded, I'd be willing to bet most of them would have never envisioned a preschool graduation in his future.  But God knew, and day after day in that ICU he breathed peace into our hearts.

So that day, as I lavished Ethan with love and kisses and "I'm so proud of you"s, I breathed out praise and thanks to the one who created him -- to our Savior who sees us, and knows us, and delights in us.  That day was such a sweet reminder for me.


But, back to the graduate.

The day before his graduation, on his last full day of Pre-K, I snapped a photo of him and posted a side-by-side to Instagram.  The picture on the left was taken on his first day in September and the picture on the right was taken just a short eight months later.


Eight months!

We have a relaxed summer ahead of us before we set-out on the next leg of this journey -- kindergarten.  I am over the moon about the school he'll be attending and I can't wait to see how he'll flourish there! Just imagine that before and after photo...

Thanks for checking in and for loving our boy.  To God be the glory, great things He has done!



Sunday, May 18, 2014

Lately.

Hey friends -- it's been a minute, huh?

Remember that 80's song, "Video Killed the Radio Star"? Randomly enough, it often comes to mind when I post to Instagram.  The ease of sharing paused moments of time, paired with a few quick thoughts, is slowly sucking the life out of the good 'ol blog.

But... I realize not everyone has succumbed to the lure of photo filters and Facebook sharing (good for you!), and I really do want this blog to remain a space that declares God's big story through our little family.  So, here I am.


We've had a fun spring so far, marked by beautiful North Carolina weather and lots of family time.  It's been a good thing for all three of us! The end of the winter season was a weary time for me -- I was consistently tired and overwhelmed and discouraged -- but the sense of new life that comes with spring has been renewed inside of me as well. 


Of course, that's not to say every day is a mixture of rainbows and unicorns.  It takes rain to make a rainbow and I bet even unicorns poop.  The challenge is not allowing the messiness of day-to-day life ruin the joy of living life at all.  Some days come with many opportunities to choose joy and some of those days I fail miserably; other days, joy comes easily, despite whatever chaos may be happening around me.  I'm learning a lot about the difference between happiness and joy, and I'm certain I want to live that grace-filled, joy-filled life.  Praise God he's given me a little boy that knows a thing or two about that!



In other news, we found out last week that our foster-to-adopt application has been approved! We will begin our MAPP (Model Approach to Partnerships in Parenting) training in July and should be licensed foster parents by the beginning of 2015! This is a very exciting time for our family and I cannot wait to see what God is going to do with all of this.

Ethan finishes up his last year of preschool this week, then we'll be gearing up for kindergarten! I could cry (and probably will) as I spend time reflecting on the years leading up to this moment.  We've had many challenging days with him lately and I've doubted everything from our parenting skills to his ability to understand.  Time after time, though, God reminds me that he is good and faithful.  He has seen us this far, through much harder days, and I'm confident that He's equipping us to be the parents Ethan needs us to be (and holding Ethan close through it all).  Next month brings another check of his heart and we're trusting God will make those next steps crystal clear.




Thank you for checking in and continuing to pray for us -- your love is so encouraging! Have a joyful week!



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