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


"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

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