Wednesday, December 30, 2009

Change of Plans

I have a quick (yeah right, who am I kidding?) update for y'all tonight. As you know, we took Ethan to Duke yesterday for his pre-op appointment. Everything went well and we were told to call in on Thursday evening to find out exactly what time his surgery would be on Monday. We left feeling good, excited to get this "behind us".

Today, I got a call from Ethan's cardiologist himself. The pre-op nurse had called him yesterday to ask a question and that, evidently, was the first he had heard about Ethan's upcoming surgery. It's a long story, really, but it basically comes down to him not wanting Ethan to go into any OR until he has a chance to check-out his heart function. Not only do I respect and trust his decision, but I so appreciate him calling me, personally, to follow-through. (I was under the impression that he already knew about the surgery and had no concerns... again, long story.) He was deeply apologetic for the inconvenience, but asked if we could bring Ethan in tomorrow morning. Of course, I agreed.

So, we didn't make it to 2010 after all. Ethan will have a full work-up tomorrow, the very last day of 2009: chest x-ray, EKG, echo, and possibly have some blood taken. Based on the results of the tests (the echo, especially) Dr. I will decide if he thinks we should move forward with the surgery on Monday.

I would be a little disappointed if he told us it's a "no-go" but, then again, I wouldn't do ANYTHING to compromise the healing of his heart. Ethan is making-do just fine with his left hand, and it can stay that way for months if need be.

Here are some specific things I'd like for y'all to pray about, if you would:

-that God's healing power would be made evident during the echo tomorrow. Only He knows what's been going on in Ethan's heart over the past month and a half; I'm praying for restored heart function and low pressures in the spot where the conduit is sewn into the pulmonary artery. Not only would this allow "the show to go on" but, more importantly, it would mean Ethan's heart is making excellent strides towards recovery.

-that Ethan would be cooperative during the tests. It's going to be very important that Dr. I get good pictures during the echo, and that can be somewhat difficult when you have a squirmy/aggitated/busy baby.

-for wisdom for Dr. I as he decides what will be best, given the quality of Ethan's heart function.

I'll probably update my Twitter page throughout the day since it's gonna be a long one! If you don't have Twitter, remember that you can see the updates on the bottom right-hand side of the blog.

Even though we're a bit surprised by today's happenings, it's comforting to know that none of this was a surpise to God. I'm confident that everyone as Ethan's best interest in mind, and that He is perfectly orchestrating every moment.

Tuesday, December 29, 2009

A Christmas to Remember

As I mentioned in my previous post, we've had such a great time hanging out with family and friends over the past few days! We started our celebrations in Mebane on Thursday morning and they ended in Riegelwood on Sunday. I was ready to get the three of us back in our own beds, but I already miss the time we spent with some of our favorite people.

More than anything, I think Ethan absolutely loved all the extra attention! See for yourself...

He got to nap in Grandma A's arms,

watch TV with PawPaw,

play with Uncle Nick,

and get hugs from MawMaw...

...not to mention seeing Auntie Terry & Uncle Rich, and playing with the slew of animals that were around the house! And that was just in Mebane.

Then, at my parents' house, he enjoyed lounging in Grandma B's recliner,

snuggling with Aunt Bubbie,

and sitting with Poppy,

He also got to hang out at my favorite restaurant in Wilmington with two of my favorite friends, Donnie and Taylor!

This was only the 2nd time they had seen Ethan. Their first visit was back in March, when Ethan was still in the PCICU recovering from his first heart surgery.

What a difference 9 months can make, huh?!

I feel so blessed to be surrounded by such loving people. We were showered with such generous gifts, including tons of much needed (bigger) clothes for our fast-growing baby boy! But even without all of that... take the gifts away... and those four days would have been just as sweet and memorable. There were days at Duke when I wondered if Ethan would ever celebrate his first Christmas. The simple fact that he did, and enjoyed every single minute of it, is enough for this mama.

Here are a few other tid-bits about what else happened over the weekend:

-Nick, Jeramie's brother, won the annual Christmas Poker Tournament and Jeramie had to hand over the trophy. Although I'm sad (cough cough) for Jeramie, I'm thrilled to have my mantle back! (Love you, babe!) :)

-Ethan received his most painful present to date: two more teeth. This officially evens out the bottom with the top, for a total of 8!

-My dad found, by far, the biggest oyster we've ever seen. We have an oyster roast each year at Christmas and, between my daddy & I, we've eaten a lot of oysters over the years. Never in my life have I seen one as big, and nasty looking, as this one! The picture really doesn't do it justice...

-Ethan officially learned to wave. He's been doing it over the past few weeks, but not really with meaning or great skill. Now, he waves at his toys, people in restaurants, his feeding pump, the get the idea.

-He's also started babbling a little more. His favorite sounds are "mmmmmm" and some funky combination of a b, a, and y (it sounds something like buuhwaah) and it makes me laugh every time!

-After our lunch with Donnie & Taylor, Jeramie dropped me off at the hospital in Wilmington so I could have a quick visit with Jesse & Jennie. It was such a blessing to see Jennie! Even with all she's been through, she looked absolutely beautiful. Thank you, Jesse, for letting me come up and spend some time with you and your amazing sister!

So, here we are, back in Raleigh gearing up for a busy week, including celebrating the New Year! I look forward to what 2010 has in store, but I will never forget how 2009 made us the family we are today. More on that later...

For now, we've got to get ready for some developmental therapy, then a visit to Duke for some pre-op screening for Ethan's hand surgery next Monday. I'll be sure to update y'all on those details later on today!

Happy Tuesday!

Monday, December 28, 2009

We're Still Here...

...just a little worn out from the past few days! We had an amazing time celebrating Christmas with family and I think it's safe to say that Ethan thoroughly enjoyed it, as well! He barely slept, but smiled and played more than I've ever seen. I mean, really, who wants to sleep when you get to hang out with all four grandparents in as many days?!

Not that guy!

I'll update y'all on our recent happenings soon, but first I wanted to fill you in on a few changes I've made to the blog. It's true that I tend to update my Twitter page much more frequently than I update the blog, and many of you have "missed out" on some things that I may have mentioned over there instead of here. So, since I aim to please, you can find my most recent Twitter updates in the right-hand column, all the way down at the bottom, under the heading "What Are We Doing?". You're welcome.

While you're there, glance over at the left-hand column and you'll see the cutest picture of the chubbiest cheeks you've ever laid eyes on. If you click on that picture, you'll be directed to our Flickr site where we house the many, many pictures we take of that chubby little face.

I've also added a few other heart friends to the blog list, and I've included a brief summary of Ethan's journey thus far.

For me, the purpose of this blog has been three-fold. At first, it was a way to allow friends and family to stay up-to-date with my pregnancy and Hannah's Ethan's upcoming birth. Then, it was a definite source of information as Ethan's condition was unraveled, but it also provided a way for me to express my thoughts and emotions about it all. Now, it is still those two things, but I have a desire that it will be found by other parents out there who may be traveling down this same road.

For those of you who come here daily/weekly/monthly to check in on Ethan, I hope you'll enjoy the little additions that will give you another glimpse into his amazing world.

For those of you who are just starting out on your "heart journey" or are even in the midst of it, I pray you'll find hope and encouragement through Ethan's story.

And, as for me, I'll just keep writing. Through the happy, sad, frustrating, scary, and exciting times, I'll write.

Thanks for sticking around! Can't wait to share some of my favorite moments from Ethan's 1st Christmas :)

Until then...

Wednesday, December 23, 2009

Merry Christmas!

From our family to yours....

Tuesday, December 22, 2009

Under Construction

Hey y'all. As you can see, I'm making a few changes to the blog layout. It's definitely a work in progress, but stick with me!

Monday, December 21, 2009

My Desire

For the next 2 weeks, I am a stay-at-home mama. I really can't explain it, but I feel like this is what I was created to do.

Last night, I made a homemade chicken pot pie. Yes, you read that correctly.

A homemade chicken pot pie.

Now, my hands didn't come anywhere near the nasty, slimy chicken; I have a wonderful husband to thank for taking care of that part. But everything else was all me. I felt so proud after it came out of the oven, looking all golden brown and whatnot. There was a sense of accomplishment that bubbled up inside me and, other than needing a little extra pepper, it actually tasted good!

There was one other time, right after we got married, that I attempted a "big" recipe (homemade lasagna), but that's about it. I do not claim to have inherited any of my mama's cooking skills, but I think there may be hope that I can learn!

Then, this morning, I had done two loads of laundry, changed out the crib sheet, cleaned up after two big spit-ups, and put Ethan down for a nap... all before 9:30. And, other than the scare that came along with the gushers, I actually enjoyed it. Again, I felt accomplished.

Don't get me wrong here. I love my job and my kids at school. There's a different type of pride that comes along with teaching a deaf child to read, and count, and recognize his name. But to be a full-time mama to my special little boy is nothing short of my heart's desire.

I look forward to the day when I can be the wife and mother I aspire to be. I can't wait until cooking dinner for my husband doesn't just add to my stress and exhaustion levels. It will be a beautiful day when I don't have to rush home after a meeting or running errands, hoping I'll be able to see my son before he goes to bed. I look forward to not feeling guilty about taking a day off of work to take Ethan to an appointment, or to stay home with him after a surgery. I'm not saying that staying at home will be easy and that there won't be stressful times, but I fully believe there is joy to be found in doing the very thing you feel you are called to do.

I'm so ready for that.

"Delight yourself in the Lord
and He will give you the desires of your heart.
Psalm 37:4

Friday, December 18, 2009

On Being a "Heart Mom"

I read this the other day and just had to re-post it. Steve (aka The Funky Heart) is a great writer and speaker... stop by his blog sometime and see for yourself!

Heart Moms and Heart Dads are a special breed of people. Things were going wonderfully, then suddenly a doctor took them aside and said “We think there might be a problem with your child’s heart…” and everything changed. The ground began to crumble under their feet, and all their dreams suddenly became a nightmare. Something is wrong with our baby, and for all anyone knows, it just… happened. Nothing we could have done to stop it or prevent it.

Some families crack under the pressure. Now you have a sick child and a broken family; a double tragedy. And in some families…

… in some families, the parents-to-be come closer together. Mom’s maternal instinct kicks into warp drive; she’s going to protect her child with every weapon she has. She’ll ask questions until the doctor screams for mercy and dispute any advice that doesn’t seem right. The quiet, unassuming woman you married will get in the face of anyone who doesn’t seem to be acting in her child’s best interest. Heart Moms develop iron wills – they will go to the ends of the earth for their child, and if that’s not far enough they’ll tie a rope and drag the earth with them.

A dad’s job is to protect and to care for his family. A Heart Dad realizes that through no fault of his own, he has failed that task. He also realizes that he can’t fix this problem – yes, that is part of his job, but for most of us, precision cardiac surgery is not something we know how to do.

So a Heart Dad accepts the fact that he has to find someone else to do his job for him – and men (especially fathers) don’t do that very well. But Heart Dads put their pride on hold and dedicate themselves to one task: getting their child safely to the help that they need. Maybe it’s not such a “manly” thing to do to ask for help, but they do it. And then our couple learns all about how time moves slowly in a waiting room, how the battle is fought day by day (and sometimes hour by hour) and that sometimes the good guys don’t win.

I love people like that, and I love meeting them. Because as hard as they’ve fought, there is still a seed of doubt in their minds: Will my child make it? What kind of life is he going to have? What’s going to happen to them when I am gone? Most of the Heart Parents I have met are young – in their 30’s, at most. They’re still learning, and things may be OK right now, but they’ll be fighting this battle all their lives.

I don’t claim to be an “inspirational speaker” and I am learning right along with everyone else at the CHD conferences I’ve attended. But maybe I can say something – or just introduce myself as a 43-year-old CHD survivor – and it will all fall into place. With good medical care and a little good fortune, your child can grow up and live a normal life.

I was sitting in my pediatric cardiologist’s office – trying to fit into one of those little chairs – when the man sitting next to me said “So… I guess you’re just here to pick up a prescription for your child?” Without really thinking about it I said “No, I’m the patient; just waiting for my appointment.” And I literally saw his face change as all his dreams about his child were reborn.

Moments like that are awesome.

Sunday, December 13, 2009

Intermission - Ethan Laughs

Enjoy :)

Wednesday, December 9, 2009

Update Part 1: Orthopedics

Hey y'all. Sorry for the lack of updates over the past few days. Between Jeramie's trip to the ER on Friday night (no worries, he's fine now!) and our general sickness over the entire weekend, I haven't really felt like writing. But, alas, there is news to tell and it wouldn't be very nice of me to keep y'all in the dark, now would it?

Jeramie took Ethan to see Dr. F., the orthopedic surgeon, on Tuesday. The appointment went well and, as always, they were thrilled to see how great he looks! Dr. F. was particularly impressed with his arm and said everything is great.

After taking an x-ray, he decided that he will not need to re-cast Ethan's arm! This is good news, for a couple of reasons. One, we won't need to mess with another bulky cast and, two, it means his arm is already in good position for surgery.

"Surgery?!" you ask? Yep. Surgery.

Ethan is on the books for Monday, January 4, as long as his cardiologist is OK with the plan. We were really hoping to get it scheduled for the last week of December, but evidently those spots have been filled up for months. As long as everything goes well, he will only need to spend 1 night in the hospital. I will end up taking a few days off of work that week, but he should be good-to-go come that following weekend.

I'm really excited about closing this chapter of his story. I know he'll probably be followed for a while after surgery, but this has been hanging over our heads ever since we brought him home in May. I'm encouraged as I watch him figure out how to use his left arm, and I'm looking forward to what he'll be able to do after surgery. As always, I'll be praying for a quick recovery and that God would spare him of any potential complications.

So, there ya go. Stay tuned for "Update Part 2: Friday's Appointments".

Monday, December 7, 2009

9 Months Later

Let's take a little picture walk....

9 days old
-6 days post open heart surgery
-2 days away from having a permanent pacemaker inserted

9 weeks old
-Mother's Day 2009
-2.5 weeks post full cardiac and pulmonary arrest
-recovering from the Nissen/G-tube surgery
-4 days away from going HOME

9 months old
-caught mid-clap
-wearing an outfit of Brayden's (thanks, Mandy!), post diaper blow-out
-smiley, happy, and playful

Happy 9 months, Ethan! We love you more and more every day.


WOW. I just realized it has been over a week since I last posted! I guess I haven't had much to say. Or maybe it's that I've had plenty to say, but just not enough time to make it known to the bloggy world!

Yeah, I think that's it.

Be prepared; this is gonna be a long one!


Thank y'all, so much, for all the prayers for Jennie. Please continue to be in prayer for her and her family as they still have a very long road ahead of them.


Life has been crazy lately. It took a few days for me to get back into the swing of things after our Thanksgiving break. Every vacation we have makes going back to work that much harder; I absolutely love being at home with Ethan! It is very difficult to wear the "teacher", "mama", and "wife" hats at the same time, all the while leaving a little bit of time for me to just be "Joye". I am learning, though! Y'all could be praying for me, specifically, that I'll find better ways to manage all the different areas of my life. It makes me tired just thinking about it.


I took Ethan back to the ENT doctor last week and we all agree that his adenoids need to come out! Dr. H also noticed that Ethan has fluid in both of his ears, and will possibly need PE tubes. The standard is to wait 6 weeks to see if the fluid will clear up on its own. If not, Ethan will be having surgery to remove his adenoids and insert the tubes.


Speaking of appointments, we have quite the week this week! Ethan will go see Dr. F, the orthopedic surgeon, tomorrow afternoon. It's possible that he will want to re-cast Ethan's arm, and I'm hoping we can go ahead and schedule that surgery. Friday brings a 9-month check-up, including the H1N1 booster shot. We'll head to Duke after that to meet with Dr. W.

Whew. Are you overwhelmed yet?

Because I am.

BIG week! We should get a lot of information about what Ethan's course of care will be over the next couple of months. I'm hoping we can have the majority of these surgeries out of the way before his 1st birthday.

Did I really just mention his first birthday, as if it's in our near future?

Dang. I think I did.


Thanks to everyone who participated in Red and Blue Day! The more awareness that can be raised for Congenital Heart Defects, the better! There are brilliant doctors and surgeons all over the country who are researching the latest and greatest when it comes to all things "heart". We will be forever grateful for their time and talent, and for your willingness to raise awareness for this cause!


And, in case you don't follow me on Twitter or Facebook, let me proudly exclaim that Ethan finished his first ever container of baby food this past weekend!! It took him two days to do so, but it was a HUGE deal. So huge, in fact, that I asked Jeramie to get the empty container out of the trash so I could take pictures of it. No worries, though; Ethan's hands came no where near the grimy, EMPTY container.


I think I'll leave y'all with that. I've got a bad case of the Mondays, and some time on the couch with my favorite quilt is just what the doctors I have ordered.
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