A Heartfelt Goodbye

The Congenital Heart Defect community suffered a major loss today. Many of us are still wiping away the tears, or trying to convince ourselves that it was all just a bad dream. I think it's safe to say that everyone is sad, many are angry, and most are shocked.

Steve Catoe, also known in the CHD community as "The Funky Heart", passed away sometime late last night/early this morning. His death came as a complete shock and word spread quickly throughout various social media outlets. "But, he just blogged a post yesterday!", many of us said in disbelief. Steve was a 44 year old living with Tricuspid Atresia. He wrote the blog "Adventures of a Funky Heart" and was fearless when it came to advocating for CHD awareness, research, and fundraising. It seemed he was constantly researching and constantly encouraging downtrodden heart parents, myself included.

I was fortunate enough to meet Steve last summer. He came to Duke to speak during a CHD Symposium and I had just began reading his blog a few days prior. When the host of the symposium announced he would be coming up to the podium, I inhaled deeply ... OK, so I gasped; I was star-struck! During the lunch break, I nervously approached Steve, introduced myself, and explained my silly teenage girl behavior. Just as humble as he could be he said, "I wondered who would be that excited to hear me speak!"

What he didn't know, and what I never told him, is that I've hung onto his every word since then. Whether in person, or through blog posts, I always learned something from him. I looked forward to his posts, and I appreciated his kind words during some of our scary moments with Ethan.

Steve will be greatly missed. Although now perfect, it is my hope that the message of Steve's once funky heart will continue to spread. He has paved the way for us, let's continue down it.

Here and there

Thanks for all the well wishes from my last post! Although Ethan's stomach virus was short-lived, it was crazy contagious and I woke up last Tuesday morning sick as all get out. By lunch time I barely had the energy to get off the couch and I had to call Jeramie to come home early, yet again. He was such a trooper, though; he took care of me (I had it much worse than Ethan: chills, fever, etc.), and gave lots of love and attention to Ethan who still wasn't feeling 100%. Unfortunately, after being all up in mine and Ethan's sickness, he got sick on Wednesday and spent the entire evening in the bed. By Friday morning, though, the three of us were good as new!

Here's to hoping that was our fair share of stomach ick for the flu season!

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Thankfully, our sickness cleared up in time for the fun weekend we had planned. Friday night, we attempted to take Ethan to his Uncle Nick's playoff football game. (Jeramie's brother is the head coach for a high school in Kinston, NC.) Ethan had a great time playing around the field before the game started, but quickly went downhill from there. Let's just say that he and I left halfway through the first quarter! At least we got photographic proof that the three of us actually made it to a game together!

On Saturday morning, Jeramie's parents came to pick up Ethan for a night at their house. After the week of sickness we had just experienced, I welcomed the break! Ethan settled right into his carseat and barely even gave me a good-bye hug before he asked to watch the TV in their car. Unfortunately, he now thinks every vehicle comes equipped with a "tee dee" and is sorely disappointed when he climbs into ours!

Ethan's sleepover gave Jeramie and I the chance to spend some much-needed time together and to attend a going away party for some really good friends of ours. Mike and Amanda are moving back to Ohio and we are going to miss them terribly! It was so nice to spend time with them, and other friends, without the interruptions of a 20 month old.

Come Sunday afternoon, though, I was ready to see my boy! After lunch with friends, and a quick stop by the outlets, we zoomed down sat in traffic on I-40. I could have walked faster than the cars were moving! We finally made it to Jeramie's parents' house around 5:00 and my heart melted when I saw my sweet baby cuddled up on the couch, watching a movie. He had a great time playing with his Grandma and PawPaw, and I am so incredibly thankful that he gets to spend so much quality time with both sets of his grandparents!

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Today, I took Ethan to see his feeding therapist, but not for feeding issues this time. This was much to Ethan's surprise; we strapped him into the high chair, as usual, and he proceed to ask for food. Homeboy knows the deal when we walk into her office! Today, however, was for a speech-language evaluation. Over the past few weeks, I've noticed that Ethan seems to be trapping air in his nasal cavity when he makes certain sounds. I brought it to her attention during our last feeding therapy session, and we both agreed that a speech evaluation would be a good idea. He got an all clear from his ENT doctor last week, so at least we know that poor hearing isn't to blame. The evaluation confirmed my suspicions; we have a lot to work on! After we get the go-ahead from insurance/Medicaid, Ethan should begin weekly speech therapy sessions to correct these bad habits. The good news is that, from a language standpoint, he is ahead for his age as he was able to complete tasks in the 24-29 month range!

I took this video of him earlier today repeating his ABCs and you can hear some of those trapped air noises when he tries to say "g", "h", and "j".

His therapist assured me that these are very correctable behaviors, so hopefully we'll have him speaking clearly in no time!

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It's a beautiful day here in Raleigh today! We enjoyed a fun morning at the park after Ethan's speech evaluation, and I think we'll head back outside after he wakes up from his nap.


I hope y'all have a wonderful week, celebrating all you have to be thankful for! Thanks for checking in!

Ethan Update

Oh, what a day.

(For those of you who followed the play-by-play on Facebook, please excuse any repeat information as I attempt to bring everyone else up to speed.)

Around 9:30 this morning, after breakfast, Ethan started acting a little funny; he was extra whiny and wanted to be held non-stop. This is highly unusual for him, on both accounts, so I had a feeling something was up. A few minutes later, he began to act like he wanted to throw up. Due to his intact Nissen, finding relief in that fashion is not an easy task. He gagged for a bit, which was absolutely heart-wrenching to watch and finally, about half an hour later, he was successful. Actually, "successful" might be a bit of an understatement; I'd say he was quite the over achiever, as this continued from about 10:00 this morning until 3:00 this afternoon.

After the 5th time, in which he slipped and fell in a puddle of his own bodily secretions, then proceeded to pass out on my chest, I called Jeramie to come home. I had reached my breaking point. Give me blood, heart surgery, and catheters; I cannot handle that much vomit.

He was able to sleep about an hour before his tummy started to act up again. Jeramie walked through the door not long after with bottles of Gatorade for Ethan, and a bag of chocolate for me, in hand. I'm not sure who looked worse at that point, me or Ethan.

We attempted to give him a little bit of Gatorade, but he wasn't able to keep it down, so I laid him down for a nap. Thankfully, he slept for about two and a half hours, which gave Jeramie and me time to disinfect every toy and every solid surface downstairs. I was even able to sneak in a short nap before Ethan woke up. Have I mentioned that my husband has the heart of a true servant?

Amazingly, Ethan woke up around 5:30 this evening like a brand new baby! He quickly let us know that he wanted something to drink, so we tried the Gatorade again, and he sucked it down in a matter of seconds.

Then we waited.

I prayed it would stay down, and we distracted him from his desire for more while we waited to see what would happen. Fifteen minutes later, we gave him another ounce or so, waited, then he drank another ounce fifteen minutes after that. Before we knew it, he was drinking more volume more frequently, and ended up keeping down about 7 ounces of Gatorade, plus some dry Cheerios!

He even played a bit, then I took him upstairs for a much needed bath. By 8:00 he was bathed, in his pajamas, and asleep in his crib. I think it's safe to say he is worn out from today's events, and I am too.

In fact, I am going to place the order for our Christmas cards, probably eat a bowl of cereal for dinner, then most likely pass out on the couch watching TV. I hope and pray we all wake up well rested, and healthy, tomorrow morning.

Goodnight, y'all!

Laughter Abounds!

Thought y'all might like to catch a glimpse into a typical afternoon with the E-Man.

Enjoy!

Fall Photos

A few weeks back, we had some family pictures taken by our friend Amaree. I know that she is an awesome photographer, so I expected them to be good. However, "good" just isn't strong enough of a word to describe the moments she captured! I have been so wrapped up in these photos since we started looking at them last night, and I wanted to share a few lot of them with y'all.

Happy fall, with love from the Tri Mulli!

Post-Op, Day 3

Ethan's recovery continues to amaze me! I cringe every time he climbs up on the couch, or lands just so coming off of his slide, but he isn't bothered in the least. The surgeon didn't limit his activity in any way, so we're just trusting that if it hurts, he won't do it.

We took him to Duke this afternoon for his post-op visit and Dr. W confirmed what we've been thinking over the past few days; everything looks great! The swelling is minimal, we haven't seen any blood, and Ethan is wetting diapers just fine. That was about the extent of our visit. They had us in and out of there before our scheduled appointment time even came around. We'll go back next Friday to have the catheter removed, and then we'll be DONE!

Ethan also had to get his first Synagis shot of the season today. I am so thankful he qualified again this year; we'll take all the help we can get in order to protect his heart and lungs from that nasty beast called RSV! In order to get the correct dosing for the shot, they had to weigh him and I think I held my breath waiting for the results. But, let me just say that we (the pediatrician, included) were thrilled with his growth!! According to their scale, he's up to 24 pounds, 10.5 ounces which places him in the 25th percentile for his age! That's a heck of a lot better than the "near 10th" we were at a few weeks ago. Duke got an even higher weight, with him coming in a couple ounces shy of 25 pounds. Y'all better believe I'll be happy-dancing up one side of the office and down the other when my little beefcake reaches that 25 pound mark!

Thanks for checking in! As you can see, it has been a fantastic day ... a fantastic week, really ... and I couldn't be more proud, or happy, if I tried.

Post-Op, Day 1

Well, friends, we are HOME! We were officially discharged around 8:30 this morning, but had to wait for some prescriptions to be filled before we could actually leave the hospital. There was no containing Ethan in our hospital room any longer, so we walked about fifty-eleven miles around the 5th floor just to keep him entertained. People were surprised to see him up and walking running around and, honestly, so was I.

I don't know where my expectations for this surgery came from, but the reality of our situation far exceeded all that I had imagined. I'm pretty sure there's a sermon in there somewhere about how we as humans feel as though it's all up to us, regardless of how much we say we rely on God. Did I know that we have tons of family and friends praying for a successful surgery and quick recovery? Yes. Do I know that I worship a God who has proven Himself to be faithful to me over and over and over? Yes. Did I still believe that this would be the worst experience ever? Yes.

What is up with that?!

I can totally hear what I believe God would be saying if He were standing in front of me right now. It's the same thing Jeramie says when I slam on my invisible passenger side break as I brace myself for impact; "Joye ... I've got this."

I can look back over the past 30ish hours and see God's hand, so perfectly at work.

"OK, Joye, so you're concerned about passing the time in the waiting room? How about I give you a friend to visit with? Oh, what's that? You're worried about how Ethan will react to waking up from anesthesia? Fine; he'll be calm and relaxed in your arms. You think he won't tolerate the pain because he's walking now? Just wait and see ... I've got this."

Yes, Lord. I'm listening. I heard You loud and clear as the surgeon came out (one and a half hours EARLY) to tell us everything went perfectly, there was minimal blood loss, and he was able to achieve best case results without a known need for a 3rd surgery. I heard you at dinnertime as Ethan chowed down on chicken nuggets and french fries, and blew kisses to his nurse. I heard you this morning when the first words out of our day nurse's mouth were "Hi! It's good to see y'all again, but you're going home now!"

The whole experience has just been surreal. Even here at home, Ethan devoured his lunch, played on his slide for a bit, and is now in his crib taking his typical afternoon nap. The only differences between today and Monday is that we woke up in a hospital, diaper changes are a bit more tedious, and we have just a few more medications to give.

Today I am thankful for the people who have helped us carry this burden, through prayer, encouragement, and physical acts of kindness (which is essentially all of YOU!). I am thankful that God remains faithful to me and my family, and I am filled with gratitude for His amazing grace that covers every inch of my doubt and disbelief.

Through many dangers, toils, and snares,
We have already come;
'Tis grace hath brought me safe thus far,
And grace will lead me home.
-Amazing Grace, the hymn

Amen.

Surgery Day Update

Hey y'all; this will be quick. Ethan's snoozing, Jeramie just got comfy in his chair, and I'm well on my way.

(Actually, I take all that back. Ethan just woke up, so now he and Jeramie are both in the chair, which is where I imagine they'll be sleeping tonight.)

It has been a long, but blessed, day. I will definitely write more later about the way everything happened, but I think my mother-in-law said it best when she said that this has been the smoothest surgery experience yet.

As long as all goes well overnight, we should be going home tomorrow morning. Nothing major to report here, just wanted to check-in.

Thank you so much for praying us through yet another surgery. I can honestly say I felt them coming all day long, and the proof is in the amazing recovery of one brave little boy.

Procrastinating

Well, Ethan's surgery is still a-go for tomorrow. Despite Jeramie and I having colds since Saturday, Ethan has managed to stay healthy and symptom-free. Thank you, God!! I'm sure it didn't hurt that we popped Mucinex and Tylenol Cold & Sinus like they were pieces of Halloween candy.

I'm obviously delaying the inevitable here. There is so much to do to get ready for a hospital stay. Snacks to pack & electronic devices to charge (we're looking at a 4-5 hour wait during surgery), outfits to plan (that can be harder than you think), and a house to clean (who wants to come home from the hospital to a dirty home?).

Y'all might think I'm crazy, but sometimes I try to convince myself that I'm doing all of this because we're going on some fabulous vacation to some tropical island far, far away. Then, the reality sets in that I'm sending my child into a surgical procedure, of some sort, for the 11th time. I'll be signing yet another consent form in which I tell the surgeon that it's OK if Ethan bleeds out, or has some adverse reaction to anesthesia, or just doesn't wake up at all. That doesn't sound like some great get-away, now does it?

Although I'm ready to get this procedure behind us, and I'm thrilled that we shouldn't have any other surgeries looming in our future anytime soon, I just don't feel like doing the things that need to be done in order to get ready for it. So, instead, I've checked Facebook more than usual, I've sent some e-mails that could have waited, written this blog post, and (most importantly) I've read a few more books and given a few more cuddles to my innocent, yet scarred, little boy.

Say some prayers for us and keep an eye on Facebook tomorrow. I'll be sure to update there throughout the day, and I'll be sure to send any big updates here to the blog.

For now, I'll leave you with some pictures from last night of our lovable little lion ... raaawwwrrr!