Tuesday, May 31, 2011


I'm in a bit of a blogging stand-still right now. When I sit down to write something, I feel like it needs to be all profound-like, or it should document some huge medical drama. Since I haven't been feeling very Thoreau-ish lately, and all's quiet on the Ethan front, I thought I would insert a little bit of randomness here on the bloggy blog.

I found this when I was cleaning out some things on Facebook this afternoon. It was one of those "25 Random Things About You" surveys that I filled out sometime during my pregnancy (about 2 1/2 years ago). I'll leave numbers 8, 16, and 21 as is, but let's be clear; there is NOT another Mullis baby on the horizon!

... yet.


1. In 1st grade, my teacher refused to call me by any name other than my first (Kristina).

2. Kristina is no longer my first name; I dropped it after I got married. I am legally "Joye Davis Mullis".

3. I am fluent in sign language.

4. Sometimes, when I'm walking, I'll fingerspell random words that pop into my head.

5. I get nervous when I sign with deaf adults.

6. When I was 7, I put my wrist through a glass window and sliced it open. Now, when people see my scar, they want to know if I tried to kill myself.

7. I only have 1 sibling, a sister, and she is the BEST!

8. My husband and I are expecting a little girl in 6 weeks, but also preparing for a boy! ...it's a long story.

9. I have a weakness for anything chocolate.

10. I was the salutatorian of my high school senior class.

11. I don't like seeing misspelled words in print, so I just Googled "salutatorian" to make sure I spelled it correctly.

12. I lost the spelling bee in 5th grade because I spelled "radio" wrong.

13. I love dogs, but I don't think I'm made to own one.

14. I've never traveled out of the country.

15. I am a beach girl at heart, but being around any body of water will do!

16. The whole pregnancy process has been a HUGE faith-builder for me.

17. The 4 (um, 4 1/2) years I spent in college were some of the most fun years of my life.

18. My college roommates are still my best friends.

19. I had surgery in high school to remove an extra bone from my foot.

20. I would love to be an audiologist or speech therapist one day, but I don't think I'm motivated enough to do it.

21. Sometimes I laugh out loud when I watch my baby move around inside my belly.

22. When I was little, I had to have my back scratched every night before bed ... and I still do even now.

23. I do not like to cook. Thankfully, I have a husband who doesn't mind it!

24. I had my tonsils removed 10 days before my college graduation.

25. I've lived in North Carolina my entire life.


What's one random fact I may not know about you??

Monday, May 23, 2011

the good stuff

Have you ever had one of those weekends that felt like a whirlwind while you were in it, but once you took a second to rest from the chaos you realized just how awesome it was?

That was this past weekend for me. For my shy, introverted self, it was a stretch. Spending time with various people all day, every day, for three nights and two days straight? That used to be enough to hurl me into the fetal position, with covers over my head. We introverts like our "alone time" and our batteries are charged by that. Too much time around too many people tends to put us over the edge, and I was a little afraid of that going into the weekend.

However, and this is a huge however, I found myself pleasantly satisfied with how it all turned out. In a matter of 48 hours we spent some time with current friends, had another great evening getting to know new ones, and attended church as a family. In between that, I got to celebrate an upcoming wedding and a baby (not during the same shower!), giggle my way through Zumba, and have a much needed "date night" with my best girl from college.

It was fantastic! All of it. I was a little surprised by how well I handled all of the activity but, before you go and think I'm becoming some crazy extrovert, let me tell you that I was in bed by 10:00 last night and haven't moved from the couch for much of the afternoon!

At church yesterday, our pastor talked about what it is that we want people to know about us, and why we want them to know it. In my experience, the more we know about someone, the harder it can be to love them. As our pastor suggested, this is probably why you don't see Facebook posts stating that someone just yelled at their wife or kicked their dog. We want people to know the good, but none of us have stories that are just good. There's bad and ugly, too.

This afternoon, amidst my need for some "me time", I am giving thanks for those who know all the crap in my life, but still choose to invest in it. I am thankful that new friends have come along, whose stories we can learn, and with whom we can share ours. But, most of all, I am thankful for the reminder that all of the glory, honor, and power for what has happened in my life goes to the One who gave me life in the first place.

I pray I can come to boldly proclaim this...

"Now I want you to know, brothers and sisters, that what has happened to me has actually served to advance the gospel."
-Philippians 1:12

Wednesday, May 18, 2011

wordless wednesday - the wordy edition

Hey y'all; happy Hump Day. I hope everyone's having a great week and surviving allergy season. I have never been one to be affected by allergies, but something is giving my ears a fit the past couple of days!

We've had some periods of rain lately, too, and that has been nice. Of course, I say that as someone who enjoys cozy, rainy afternoons and not as someone who is having repairs done on their house as a result of our recent tornado. There is still so much evidence of damage around the city, and there are so many people who have lost absolutely everything. It's heartbreaking. I've been wanting to clean out some of Ethan's toys for a while now, but didn't have any motivation for where to take them. Then, I got an e-mail from a friend who knows of a family in need of EVERYthing. Toys they've asked for (among other things), so toys they will receive! It feels good to purge, but to purge knowing it's going to a family in need feels even better.

One recent, rainy afternoon Jeramie and I decided to take a family trip to the mall. It started to downpour right before we left the house and I snapped a picture of Ethan looking out at the rain.

Of course, I had to take another one of him in his spiffy new raincoat once we were outside.

Last night, Jeramie was looking at the pictures I took and said, "Wow. Remember that picture we took of him standing at the window last year? Remember how little he looked?"

I knew exactly which picture he was talking about and directed him to the correct folder. A few minutes later he said, "Check this out" ...

So much has changed in just 13 months. Our carpet has been ripped up, the walls are a different color, and we finally hung curtains! But, forget about the house. My baby is not a baby anymore, and that picture most certainly proves it!

There is so much more strength in the way he's standing, his hair has grown in like a little boy's, and he's a good 3 inches taller. It's hard to believe all the energy I wasted on worrying if the Ethan from one year ago would become the Ethan of today.

I read a quote on Facebook a while back that said something along the lines of: we spend so much time wondering what our child will become tomorrow, that we forget they are a person today. That has stuck with me ever since and has really helped me to see Ethan for who he is right now, in all of his rambunctious two-year old glory.

I am thankful for photos like those that help me to refocus my Mommy brain! Now, for a little more of what you really came here to see...

Enjoy the rest of your week!

Wednesday, May 11, 2011

wordless wednesday - the miracle edition

it's all about your heart

Ever since I watched a video put together by Sisters by Heart, I've not been able to get this song out of my head...

(Isn't that little girl dancing to it just precious?!)

I find myself singing it to Ethan throughout the day and, at times, I feel tears well up in my eyes as the words come out of my mouth. I don't know the reason behind the song, but I think Mindy should be prepared for it to become the Heart Mama's Anthem.

This song laid heavily on my heart as we took Ethan in for his cath last week. Not knowing what the outcome would be, I reminded myself of the words I had been singing and the truth behind them; I've loved my son since day one. And, as he has faced surgery upon surgery, it has been my prayer that we would let Ethan be Ethan, and not let his battle wounds define him. It doesn't matter that his scars aren't yet faded, or that surgeons will eventually add fresh ones. It's about loving his figurative heart; fostering the adventurous spirit I can already see, and teaching him respect for himself and those around him.

But I can't ignore the fact that his literal heart is special in its own way, right? It is ridden with scars and has been stitched up like an old, loved teddy bear. It is scary, and painful, and not something anyone would wish for their child. But, through all of that, we've experienced life and friendship on a whole different level. He's able to grow-up with other children who are just like him, in a lot of ways, and I get the deep, unspoken understanding that comes from a Mama who's been through it, too. In that case, it's about teaching him (and me!) it's OK to have a special heart, and helping him to love all the things that make him who he is.

Just think about the stories he can tell on the playground one day...

As all of this had been swirling around in my head late last week, we came home on Sunday afternoon and Jeramie and Ethan gave me my mother's day gifts. The song lyrics came to me again as Jeramie showed me this...

...and explained, "It's called Joye's Heart. I made a few mistakes on it, but I think it's still beautiful."

That's powerful stuff! It got me to thinking about the figurative scars that are on my own heart, and how we're all walking around with broken ones. Some require surgery, some require therapy, but we're all in need of someone to say, "it's not about the ugly scars".

I pray you'll listen to the words of this song and imagine someone singing it over you. Whether it's a spouse, a friend, a family member, or your Creator himself, hear the words...

It's not about your scars; it's all about your heart.

Friday, May 6, 2011


Man. Is God good, or what?

We are home and, other than being a little tired and cranky, we're doing well! I think it's safe to say all three of us are looking forward to some uninterrupted rest tonight.

Dr. R (yep, Kelly ... that Dr. R!) came in after the echo to share the results with us. The grin that was spread wide across his face was all I needed. Although, it didn't hurt to hear that the pressure gradient now measures around FORTY. 40! Forty, forty, forty!!!

Forty never sounded so good!

Before the echo, he came by to take a listen to Ethan's heart. Jeramie and I had noticed throughout the evening last night that the thrill (vibration in his chest wall) was gone, and we shared that observation with Dr. R. He agreed and said that Ethan's heart sounded even better than it did when he left the cath lab yesterday afternoon.

Y'all, that can't be explained by anything other than a God who is mighty to save even the tiniest of hearts. I praise Him for putting people, like Dr. R, in our path to be His hands here on Earth. To witness that level of intervention and healing is mind-blowing.

I struggle to find the right words to express my thanks; whether that's to Dr. R and his team, or to y'all for praying so fervently for our sweet boy. In any case, the glory is God's, and I hope He appreciates the simplest of thank-yous.

Thursday, May 5, 2011

Post Cath Update

Hey friends. I can't thank y'all enough for your prayers and kind words today! It has been an amazing day, in every aspect.

I'll keep this short because there's a cute and cuddly two-year old I'm planning to bunk with tonight, and it's just about bedtime here in 5325.

From start to finish, your prayers have been felt. I cried proud tears as I watched Ethan wait three hours for his procedure to start. Never once did he complain, cry, or fret. Thank you for praying specifically for that.

Then, when Dr. R met us in the hallway to share the good news, I cried major happy tears and hugged him with all the appreciation I could muster. (It was a lot).

I will say, if you were following along on Facebook today, the news was quite different. It appears the nurse who was updating us wasn't passing along the most accurate information. Either that, or I majorly misunderstood. I reported on Facebook that Dr. R was able to balloon the left pulmonary artery, and put a stent in the right. While that was good news, it wasn't exactly right, and what actually happened was even better!

Dr. R, with his incredible talent, was able to place a stent inside the conduit, at the tip where it meets the branch pulmonary arteries. This opened up his conduit, significantly, and dropped the pressure gradient from the 100's to 45!


It was no easy feat, though. He struck a very fine balance between not interfering with the valve in Ethan's conduit, and not placing the stent into his pulmonary arteries. But, he did it. The stent will be removed with the conduit whenever his next surgery may be, which means it won't stay in his body forever, which is excellent news.

The true test of today's success will be tomorrow's discharge echo. This will give us another reading of that pressure gradient, and the prayer is that it will be just as low as it was in the cath lab today. (There is a thought that the low reading could be attributed to the fact that he was under general anesthesia, and just him being awake tomorrow could make that pressure increase.)

Will you pray that tomorrow's echo will show a pressure in the 45-50 mmHg range?

If ... when all looks good after the echo, we should be free to head home!

Thank you again for loving our son and praying so many prayers for his well-being. This Mama appreciates that more than she can express!

Wednesday, May 4, 2011

Wordless Wednesday

g-tube, where art thou?

I got the call from Duke this afternoon, confirming our check-in time for tomorrow. We are to report there at 9:00 in the morning, which makes us second case. To add to my list of requests from earlier in the week, would you also pray that Ethan does well with the waiting? For all umpteen of his surgeries/procedures, he's always been first case. This has been a huge blessing, as we've never had to fight the hunger beast for very long on surgery day. It is also a blessing, I guess, that I have to remind him that it's time to eat on most mornings. I pray that he'll be easily distracted by the bag of goodies (non-edible, of course) I plan to pack, and that the cath will start soon after we check-in. A girl can hope, right?

The sweet lady on the phone today also asked that we get 24-32 ounces of clear liquids in his system between this evening and 6:30 tomorrow morning. Maybe Ethan just isn't a big drinker, but doesn't that sound like a lot?? She must have heard the surprise in my voice as I asked, "really?" and followed up with, "well, doesn't he still have the G-tube?"

As y'all know, the answer to that question is a big, fat NOPE.

I do believe this is the first time, since his G-tube came out, that I can say I miss it. I miss the convenience that came along with giving him fluids in the middle of the night, without waking him up. I miss the comfort of knowing we can push a small bolus of something after surgery to tie him over until a real "meal". The snacks I have packed for him could feed a small army. Will he want pretzels, or goldfish? Cookies? Mandarin oranges? Peanut butter crackers, or granola bars? Rest assured, whatever his hoarse little voice asks for, Mama will provide!

I'm ready to get past this small bump in our road, and I feel peaceful about whatever we may find out tomorrow. I'm sure I'll post small updates on Facebook throughout the day, and I'll be sure to post a re-cap here on the blog by the day's end.

Thank you for your prayers up to this point, and for the ones I know you'll continue to pray. Y'all are great!

Monday, May 2, 2011

the plan

Well, folks, we have a plan. I talked with a nice lady from Duke today and it looks like Ethan will be going in for a cath sooner than later.

Much sooner, actually.

They will give us a call on Wednesday and let us know what time to bring him in Thursday morning. Yep. This Thursday. Much to her surprise, and mine, they had an opening in the schedule this week, and with the doctor we wanted.

If all goes well, we'll be leaving the hospital sometime Friday and heading down to Wilmington for the weekend!

Here are some specific things you can be praying for:
  • Ethan has always tolerated anesthesia pretty well; pray this will remain true this week. (His body's handling of it, as well as him waking up from it.)
  • This cath could be what Ethan's heart needs to give him more time before the next surgery. Pray that Dr. R will make wise choices that will be of the most benefit to Ethan. We are placing a lot of hope in the fact that Dr. R will be able to intervene, in the form of a balloon or stent, that will keep surgery at bay for a while longer.
  • Pray there are no complications from the cath procedure itself. Clotting is a risk, as is bleeding, and we'll need to keep Ethan still for quite some time afterward in order to reduce these risks.
  • ...which brings me to: COOPERATION! The older Ethan gets the harder, yet easier, it becomes to take him into the hospital. We can talk to him and explain things more than we could a year ago, but he's also much more mobile and opinionated than he was a year ago! Pray that we can prepare him the best we know how, and that he will be cooperative with us, the nurses, and the doctors.
  • Finally, pray for good health throughout this week. They will not put him under anesthesia if he has a cold, and he's had a slight runny nose over the weekend. This needs to be cleared up by Thursday (read: we'll be in isolation until then)!
If anyone would like to leave advice on how you prepared your toddler/preschooler for a hospital visit (when you told him/her, how much you said, etc.), please do so!

Jeramie and I know this is not the way things are supposed to be. God knows this is a disruption of his Shalom. Because of this, we are sad. However, we are trusting that our God is great and has more control over this situation than we can fathom. Because of that, we will not fear. We will not worry. We will follow His commands; we will be strong and courageous. We know that He will go before us, and will remain there with us.

That's a heck of a lot better than what my anxiety can do.

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