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 fan...you 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
-intubated
-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.

Updates

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!

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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.

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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.

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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.

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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.

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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!

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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.


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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.

Saturday, November 28, 2009

Prayers Wanted

Hey y'all. I'm going to take a little break from updating about Ethan, and ask y'all to pray for the family of a very good friend of mine.

Jesse & I grew up together; she was one of my best friends in high school and we've managed to remain close throughout the years.

Jesse has a sister named Jennie, who is just a couple of years younger than my sister. Yesterday, Jennie was in a very serious car wreck in Wilmington. She was admitted to the ICU and underwent emergency surgery to try to help control bleeding and lower the pressure in her brain.

As of this morning, Jennie's intracranial pressure (ICP) was still very high; normal range is below 20, and the pressure in Jennie's brain has been well above 100 at times. She was unresponsive, and her pain meds had been turned off in order to hopefully stimulate some responses from her.

Early this afternoon, Jennie's breathing tube was removed to see if she would initiate breaths on her own. Thankfully, she took two breaths!! The last update I received is that Jennie's brain showed activity in response to pain. These are both steps in the right direction, however Jennie is still in very serious condition and needs lots and lots of prayer.

I asked Jesse what we could specifically pray for at this point, and she said that Jennie's ICP is still high and needs to come down. I don't know about you but, more than ever, I believe in the power of prayer and know that God is still in the miracle-making business. I have been deep in prayer and thought over the past 24 hours, heartbroken and begging God to let Jennie hang on.

I would love it if you would you join me in praying for a family that is so close to my heart.

Thursday, November 26, 2009

Thankful

Today, there are so many things to be thankful for.

Jeramie, Ethan, and I were able to drive to my parents' house in a reliable car. We have a house, and the money we need to pay our bills. We have supportive family and friends, and jobs that we (for the most part) enjoy.

But, today, I am feeling most thankful for my son's life.




I am thankful that he is alive and well, able to celebrate his first Thanksgiving. I am thankful for the nurse at Rex who first noticed that something "just didn't look right". I am thankful that we live so close to Duke, and that Ethan began receiving top-notch care so quickly. I am thankful for Dr. Jaggers' skilled hands, and his God-given ability to save Ethan's life. I am thankful for the nurses in the PCICU who loved on and cared for Ethan at a time when Jeramie and I were not able to. Words can't even express the gratitude I feel for the 3 people who performed CPR on Ethan for 11 grueling minutes when his heart suddenly stopped.

I don't even know what I would do if I ever got all of those people in the same room. I've been able to thank most of them on an individual basis, and I hope the others know that what they do every single day means the world to this family of broken hearts.

Lord, thank you for our miracle. Thank you for allowing us to see life through a new lens. Thank you for every single moment we're able to share with our son. Thank you for loving us in a way I still don't understand.

We are so thankful.

Wednesday, November 25, 2009

Swallow Study = Success!

Thank y'all, so much, for the prayers and encouraging words you sent our way for this morning! I had a lot of anxiety about taking Ethan to an appointment at Duke by myself. There's just so much to coordinate and consider, and having two people really does make a difference!


God was definitely smiling down on us, though. Ethan played & "talked" the entire way to Durham, I found a prime parking a spot right in front of the elevators, and check-in was a breeze since it was so early. We waited a bit longer than I had expected to, but Ethan wasn't bothered at all by the fact he hadn't slept or eaten. Then, when we were finally called back, I realized our favorite Duke speech therapist would be performing the study; that was like icing on the cake!

We talked for a bit about Ethan's current oral feeding regimen, then went down to radiology for the study. It was so comforting to be with someone who already knew Ethan and his quirky eating ways; she was so patient and loving with him!

For the study, she mixed some squash with the barium to see how he would do with that consistency. It took some time, and a little coaxing, to get Ethan to actually swallow the stuff but he eventually did it! He didn't hold back from letting us know how mad he was about it, though.

After the radiologist got some pictures of those first few swallows, we moved to liquid barium. Neither the speech therapist or I thought it was going to go well, given the fact he was SO upset at that point. Ethan surprised us, though, and took some from his sippy cup. The radiologist was able to get pictures of 3 different swallows that time! I will say that I was a little concerned because Ethan started "sputtering" and his cries sounded gurggly afterwards. Both of those things are prime indicators of aspiration, and I just knew he had sucked the liquid into his lungs. However, after looking at the pictures, both the speech therapist and radiologist agreed that he did NOT aspirate!

Y'all, that is HUGE!

Even through all the crying and kicking, he managed to protect his airway and swallow the liquid appropriately. We were all very pleased to see that! And, it reassured me that when he coughs, gags, and sputters at home he is most likely not aspirating his food!

So, now what?

The speech therapist recommended that we move ahead, with caution. Given that Ethan did not aspirate the thin liquid, we are free to offer him all different types of textures and consistencies, which we will do under the guidance of our incredible speech therapist here in Raleigh. Dr. H will look at the results of the study and decide his course of action for the (possible) removal of Ethan's adenoids. Jeramie and I will continue to work on oral feeds at home and watch for any seriously obvious signs of aspiration.

And Ethan? He'll keep blowing raspberries, clapping his hands, and being the oh-so-adorable eight month old baby that he is.

Just the way we like it.

Sunday, November 22, 2009

Updates, Pictures, and Wanted Prayers

Ethan has been spending a lot of time with his daddy this weekend! I love seeing the two of them interact, especially when it involves the guitar. Take a peek at Ethan practicing his skills:







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On Wednesday, I'm taking Ethan to Duke for a swallow study. I took him to the ear, nose, and throat doctor about a week ago, and it seems as though his adenoids need to be removed.

Before Dr. H moves forward with a surgery, he would like to gain a little more information about the anatomy of Ethan's airway/esophagus/nasal passages. If Ethan participates, we will be able to see whether or not any of the Barium solution (which will be the consistency of baby food) penetrates his airway, or goes up into his nose. "Participate" means Ethan will allow the speech therapist to put some of this solution into his mouth, he'll swallow it, then repeat. A radiologist will be taking pictures through the whole process to watch what happens if Ethan eats the mixture.

The last time we took Ethan in for a swallow study he wasn't ready, and we have questions as to whether he's ready now. He's been doing much better on the eating front lately, but he's still not taking large quantities by mouth. Will y'all pray that he would show off for us on Wednesday? Not only will this give Dr. H some useful information, but it could also give us a few hints as to why eating solids is somewhat of a struggle. I will be absolutely thrilled if Wednesday morning goes well, and probably pretty upset if it doesn't.

Not to mention it will be just me and Ethan, in the middle of his morning nap, forcing nasty Barium down his throat. That could be ugly.

So, say some prayers, think good thoughts, and wish us luck for Wednesday. I'll be sure to let y'all know how it goes.

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Have I mentioned that Ethan is now the proud angry owner of SIX pearly whites?! He's coping with these new creatures in his mouth by grinding his teeth. It sounds absolutely awful and I can't figure out how to make him stop. Has anyone experienced this before in babies? Any advice??

And (sort of) speaking of developmental milestones, Ethan has rolled over onto his stomach in his sleep the past few nights. He usually wakes us up, screaming to be turned over, but not last night! Jeramie walked in around 6:45 this morning to find him sound asleep on his tummy. He looked so freakin' cute, I could hardly stand it. Maybe, just maybe, we're turning a corner....

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Alright y'all, that's all for now. Until next time....

Monday, November 16, 2009

Mr. November

Check out our calendar boy! Can you find him??


(Hint: old blog header)

This calendar was created by an organization that we have come to love. They helped coordinate the symposium that Jeramie and I attended back in July, and they sent an awesome care package to Ethan while he was at Duke for his 2nd surgery.

"Saving Little Hearts" uses proceeds from their merchandise to benefit children with congenital heart defects. In just 8 months my family has, no doubt, been blessed by this organization!

Go here to purchase a calendar for yourself, and check out some of their other goods while you're at it!

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And don't forget: Red & Blue Day is Sunday, November 29. Show your support of those living with Congenital Heart Defects by wearing red & blue. E-mail pictures to ethankendrickmullis@gmail.com! You can also contact my sister, Jessi, if you're interested in wearing a CHD ribbon!

Friday, November 13, 2009

Cardiology Check-Up

Wow.

When I think about the past 4 hours, all I can say is "wow". We spent most of the morning and early afternoon with our beloved cardiologist, and we really couldn't have gotten better news than we did.

(Well, I guess he could have told us that Ethan's heart had miraculously healed itself... but we'll leave that one up to God.)

Anyway... today was a big day. Ethan had a chest x-ray, an EKG, a "naturally sedated" echo (he fell asleep right before it!), and a crazy long pacemaker interrogation session. He slept for about 45 minutes while everyone worked on him, and was in great spirits during the time he was awake. Dr. I was thrilled with how he looked (big, pink, and full of energy) and said his heart sounded "fantastic".

That never gets old.

The best news came during Ethan's echo when we were told that the right ventricle is functioning "very well". If you remember, this is the part of his heart that has had a really hard time rebounding from surgery #1, cardiac arrest, then surgery #2. In the past, it hadn't been squeezing as well as it should be, but that was NOT the case today!! In relative terms, the difference is night and day.

It was so much better, in fact, that Dr. I stopped one of Ethan's heart medications! Stopped it. He also decreased the frequency of another medication, with the intention of stopping it soon, too.

Wow.

He will be keeping an eye on Ethan's conduit to make sure that the pressures don't start creeping up again. There is a slight narrowing, but nothing to suggest a problem at this point. Pray that this past surgery will last well into Ethan's early childhood years, meaning that the conduit will stay opened-wide, allowing for the most optimal blood flow from his heart to his lungs.

As if we didn't get enough good news, our visit ended with a very loving "see you in two months". Two months?! We've not gone longer than four weeks since leaving Duke in May, but I'll take it! Lord willing, we won't see Dr. I (or any of his colleagues) for the rest of 2009.

Happy new year, our cardiology friends. We'll see you in 2010.

Wednesday, November 11, 2009

Bath Time!

Giving Ethan a bath is finally becoming a little easier. I was beginning to feel like my friend, Meg, with all the various bath seats we have in our house. Tonight, though, we found a winner!

Here is proof of our first-ever, 100% successful, bath experience.


Tuesday, November 10, 2009

My Tank is Full

Tonight, my heart is happy.

Even though I started my day by waking up late, dropping a spoon into my to-go cup of coffee, reaching into said cup of (hot) coffee to get the spoon out, burning my fingers, then finally deciding to use a pair of tongs to retrieve the sunken piece of silver, I still had a feeling it would be a good day.

Actually, I think I said it would be awesome. And it was.

My kids were (mostly) in a great mood and I was able to get a lot accomplished during my lunch & planning periods.

Then, Ethan rocked it out at feeding therapy. He took a mixture of baby oatmeal and mashed bananas, and I may even venture to say that he liked it!


After that, we put up our germ-shield and took a family trip to Durham. We walked into Babies R Us, and walked out about 45 minutes later with 1 convertible car seat, 2 cans of formula, and 1 shopping cart/highchair cover. We managed to save $50, which was kind of like getting the formula for free!

As if braving a baby superstore wasn't enough, we went a little further and met some sweet friends at Chili's for dinner. Yes, it was approaching Ethan's bed time and, yes, I freaked when he leaned over the high chair and began sucking on the edge of the table, but the time spent with Rob & Charlotte was well worth it! To be with people who can go from laughing about a "Code Brown" to crying about leaving your child in the OR, on the operating table, is irreplaceable. This type of friendship, and that level of conversation, refreshes my soul.


On the way home, I sat in the backseat with Ethan and watched as he so peacefully drifted off to sleep. I thanked God for my family, my job, and good friends.

I am thankful that, tonight, my heart is happy... my tank is full... and life, at this very moment, is grand.

Sunday, November 8, 2009

8 Months Later

Today, my precious son is 8 months old.


This has been the first time, since his birth, that the 8th has fallen on a Sunday. There was just something about him being 8 months old, on Sunday the 8th, that seemed a little extra special and emotional.

We listened to "Our Hope Endures" on the drive back to Raleigh today and I was flooded with memories. It was about 3:15 and I remember thinking that at that time, exactly 8 months ago, we were visiting Ethan in the Special Care Nursery at Rex, just beginning to learn about his heart defect.

It's absolutely crazy the amount of knowledge we have acquired in such a short time. The amount of love that has filled my heart is even crazier! I am completely thankful, everyday, that God has allowed me to know this kind of love.

In honor of his "golden-month" birthday, I thought I would share 8 fun facts about our (literally) bouncy baby boy:

1. His favorite toy is the plunger to a 60 mL syringe.
2. He has just learned to clap his hands, and does it all. the. time.
3. As of last Friday, he is 11 ounces away from 22 pounds. This means a new car seat is in our immediate future.
4. He talks to Annie and REALLY wants to play with her. He's not really aware of the fact that she's more than put-off about his presence in her house.
5. That 3rd tooth is FINALLY making its way through his so very stubborn gums.
6. He can roll over from front to back and sit-up, independently.
7. He doesn't seem to care for too many baby foods, but has taken a strong liking to my mama's homemade sweets. (I'd rather not elaborate on how we've come to that conclusion.)
8. His chunky thighs are so very ticklish, as is his neck!

The list could go on and on, and I am excited about what the next few months have in store. I look forward to learning about, and loving on, my amazing little boy!

Happy 8-month birthday, Ethan. We love you.

Saturday, November 7, 2009

Hair Today, Gone Tomorrow

BEFORE:





AFTER:


(There's a slight angle, from the back to the front, that you can't see because of the turtleneck. Oh well. You get the idea!)

Thanks to my amazing sister, Jessi, for always figuring out how to manage this wild mane!

Wednesday, November 4, 2009

CHD Ribbons!!

I realize not everyone reads through the comments on each post, but I wanted to make sure this one didn't go unnoticed! My sister has spent some time creating A LOT of these:

Aren't they cute?!

Here is what she said in the comments of my previous post:

"To anyone who's interested, I've made some super cute little ribbons that pin onto your shirt that have little red hearts on them! I'll send them to you for free to show your support! Just e-mail me if you're interested! j.day86@yahoo.com"

Thank you, Jessi! You are the best sister a girl could ask for, and the best aunt EVER!

Remember to wear red & blue on Sunday, November 29 and send pictures to: ethankendrickmullis@gmail.com!!

Sunday, November 1, 2009

Audience Participation

If you're real observant, you may have noticed a couple of additions to the blog. The first of those is in regards to "Red & Blue Day". On Sunday, November 29, we're asking that you wear red and blue to show your support of children and adults living with congenital heart defects! Did you know that 1 out of every 125 infants are born with heart defects each year in the United States?

Like Ethan, many of those babies will undergo intense open-heart surgery while only being hours or days old. You already know what a fighter Ethan is, and this blog has introduced you to other amazing children who are fighting right alongside him!

So, mark you calendar and show your support!

AND... you may have also noticed that I added Ethan's e-mail address right under the "Praying for Ethan" button. A while back I mentioned that we set up an e-mail account for him, as a way to tell him all about his journey.

Now, it's your turn!

On November 29, take pictures, videos, etc. of you and/or your family decked out in red & blue. Send them to Ethan at ethankendrickmullis@gmail.com and give him lots to look at when he's old enough to figure this stuff out!

(My plan is to compile all of the responses into a Blurb photo book. How cool will that be?!)

Get those creative juices flowing, and have FUN!

Saturday, October 31, 2009

Happy Halloween!




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