Tuesday, July 28, 2009

Ethan's 1st Cast

Well, we did it. Actually, I guess we really didn't do anything, other than watch two very patient ladies put a cast the arm of our very mad baby. After consulting with the orthopedist about our most recent cardiology visit, we all decided to go ahead and start the casting process. If it turns out that his hand is ready for surgery and his heart is not, we'll have a plastic brace made that Ethan can wear while we wait for his heart to become stronger. In the meantime, we'll go back weekly to have his hand stretched a little more and re-casted.

I think it's safe to say that Ethan does NOT like this slab of plaster that resides from the tips of his fingers to his armpit. Yes, my friends, we have a FULL ARM cast. I have mixed feelings about it. I'm thankful that we have a treatment option, but I'm sad that he even NEEDS treatment. I feel like he was just starting to explore that hand, and now we've taken it away from him, in a way. I'm frustrated that he's frustrated. He woke up several times during his afternoon nap because he had rolled onto his back (he's a side sleeper) and couldn't pick up his arm to roll back over. I'm scared that this is going to cause him to be even more delayed in some areas, but yet I'm hopeful of the future it will give him. Basically, I'm a mess.

Will y'all pray for us? Pray that Ethan would be able to rest through the night and the coming days. Pray that he will figure out how to use what he's got, to his best ability. Pray that Jeramie and I would find peace with this decision. I know that we're doing the best we can to secure a successful future for our son; it's just so hard to fully believe that when he's so upset!

Anyway, enough of my emotional ramblings ... here are a few pictures of our day:

Ethan's hand before cast #1

Starting the casting process

"I am NOT happy!"

Protecting the ears while they saw down part of the cast

"Can we go home now??"

Hanging out with Grandma B

Finally got comfy ... sweet dreams.

Saturday, July 25, 2009


Today, Jeramie and I had a wonderful opportunity to spend the day at Duke learning from some pretty phenomenal speakers. (A huge thanks to Lisa Quinn for bringing this event to our attention, and to Grandma A & PawPaw for hanging out with Ethan!) I can honestly say that I took something away from every single talk we heard, and more than one session had my head completely spinning with thoughts and ideas! I feel the need to reflect on what I learned, for my sake. I won't be offended if you decide to skip this post altogether, but you may even learn some pretty cool things if you stick with me long enough.

Unfortunately, we missed out on Dr. Milazzo's talk about prenatal echos, so our day began with Dr. William Darden who spoke about the future of heart catheterizations. The things that can be done in the cath lab now are simply amazing! The most exciting part of this session, for Jeramie and I, was learning that Ethan may not be subjected to as many open heart surgeries as we originally thought. It turns out that Medtronic (the same company that makes his pacemaker) has created a valve that can be placed in people with Ethan's condition during a catheterization!! (Read: Does NOT require open heart surgery). The thought is that this will be standard course of care for teenagers in the next 3-5 years, and for children a few years after that (hopefully). So, it's VERY likely that Ethan will benefit from this in the somewhat near future. The thought of sparing him from multiple (at least 5-6) open heart surgeries brought tears to my eyes. However, based on my last post, we know that he'll need at least one (if not another) surgery before we're able to take advantage of this new technology.

Speaking of his pacemaker, we learned from Dr. Jay Campbell that companies are striving to make "MRI friendly" devices. Currently, Ethan can not receive a MRI due to its strong magnetic field (magnets and pacemakers don't really get along), but he will eventually benefit from being able to have a cardiac MRI performed. The hope is that by the time he has a need for a MRI, he'll have a pacemaker that will allow that to happen.

We also heard from Dr. James Jaggers (Ethan's heart surgeon, God's hands in motion, one of my earthly heroes...you get the idea) about the neurological outcomes for children with congenital heart defects. Y'all know how concerned I was about Ethan's brain activity after his cardiac arrest, so this talk was particularly interesting to me. Although my original concerns have since dissolved, this talk reminded me that we're not necessarily out of the woods. Thankfully, Ethan has one of the "less severe" (did I really just say that?!) heart conditions when it comes to possible neurological problems, BUT there are things we just won't know until he begins reaching (or not reaching) certain developmental milestones. Other than some slight physical delays, Ethan is pretty much on target. We're encouraged that, although he may never be "heart healthy", he will learn and grow alongside his peers. Just as I pray that God will protect and restore his heart, I also pray that He would spare his brain of any damage with future procedures.

These three doctors are extremely intelligent men and did an amazing job speaking in their specific areas. However, it was the session by Steve Catoe that put it all into perspective for me. If you check out his blog, you'll see that he's a 42 year old survivor of a congenital heart defect known as tricuspid atresia. (You can actually read the text of his session here.) I'm pretty sure there wasn't a dry eye in the whole auditorium and I feel like I need to paste his entire talk all over my house! As I listened to Steve, I couldn't help but think about Ethan and wonder if one day he'll be a 42 year old survivor offering encouragement to broken-hearted parents ... and after hearing about these new innovations in technology, and watching this man speak so honestly about being an adult living with CHD, I am encouraged more than ever that Ethan WILL make it, Jeramie and I WILL make it, and the three of us will be stronger because of it. Just as Ethan's broken heart begins to heal, so will ours, and we will share our story as long as we're able.

Aside from the massive amounts of new information I have, a desire was sparked to find a way to reach out to other families in the beginning days/stages of having a baby with CHD. I was sitting in the all-too-familiar waiting room of the PCICU while Jeramie and I were visiting with Jack (one of Ethan's "heart brothers") and his mom. A family was in there, their brand new baby was in the ICU, and I couldn't help but feel their devastation. I wanted to hug that new mama and let her know she's not alone in this journey, but I wasn't too sure how she'd feel about this random stranger sharing in her sorrow. My newest prayer is that God will take this desire and open up some windows of opportunity...I really look forward to what could come of this!

Thanks for hanging with me through all of that. The love and support we feel from our friends, family, and even those of you we've never met, have carried us through and we appreciate you learning right alongside us. Thank you for loving us as we are, but encouraging us to move forward. We WILL make it!

Wednesday, July 22, 2009

Mighty to Save

Yesterday was probably our best visit to the cardiologist to date! I've been pretty vocal about my prayers for Ethan's heart, and I know that y'all have been praying right along with me; and let me just tell you....we serve an amazing God.

Our cardiologist is always thrilled with Ethan's growth (13 pounds 3 ounces & 24 inches, by the way!) but yesterday he was also happy to see that Ethan's heart function has IMPROVED! Heart function is measured on a scale of "normal", "mild", "mild to moderate", "moderate", "moderate to severe", and "severe". The past echos of Ethan's heart has shown severe dysfunction in the right ventricle, but that has now been bumped up to the "moderate to severe" category! The left ventricle was previously "moderately" dysfunctional, but is now labeled "mild to moderate". These are baby steps, but steps in the right direction! He did make a point to say that the bottom tip of the right ventricle is VERY stiff, but the muscle wall (the part that really matters) is squeezing MUCH better! You better believe some tears of joy were shed in that office...

Now for the "so-so" news. Check out this picture:

The solid gray piece you see is the bridge that connects his right ventricle (RV) to his pulmonary artery (PA); it's called a "RV to PA conduit". Look at the top of the conduit where it is sewn into the artery (noted by the stitch marks). Yesterday's echo showed that the pressure going into this point is extremely high, which is caused by a tight connection (imagine pinching the end of a water hose). This will need to be fixed sooner rather than later. It looks like Ethan will be having a heart catheterization in the next couple of months. The hope is that something can be done in the cath lab to fix this problem. If not, we'll be heading towards our 2nd surgery a lot sooner than we had hoped.

All in all, we were very pleased with the visit. Even the potential 2nd surgery doesn't come as much as a surprise, as we knew it would need to happen at some point. Please pray that we would be able to hold off as long as possible to allow Ethan to keep getting bigger and stronger!

Oh, and we still plan to keep Ethan's appointment with the orthopedist next week. However, we'll be having more in-depth discussions about the timing of surgery and what to do if his heart isn't ready for surgery when his hand is. Based on the outcome of those talks, we'll decide whether or not we'll start with the casting process.

Thank you for praying, crying, celebrating, and walking along this journey with us!

The LORD your God is with you,
he is mighty to save.
He will take great delight in you,
he will quiet you with his love,
he will rejoice over you with singing.
-Zephaniah 3:17

Sunday, July 19, 2009

The New 'Do

Before: Hanging out at the lake with my sister (my stylist) and my son.

During: Did someone shave a small animal in here?!

After: Ahhh...much better!

Wednesday, July 15, 2009

Decisions, Decisions

Well, as many of you know, we met with an orthopedist at Duke yesterday. Come to find out, he's actually a pediatric orthopedic surgeon who, everyone tells us, is "the man we need". That being said, he would like to do exactly as his title states: surgery.

Ethan's condition is called "congenital absence of the radius". It's not likely that you'll find much information if you Google it, which we've figured out after months of searching. There just doesn't seem to be a lot out there, and what we do find doesn't really relate to Ethan's specific condition. However, we got some good information yesterday from Dr. F and now we have a decision to make.

We have two options. The first of those is to do nothing. We would let Ethan grow and develop as is, learning how to make the best out of his special hand.

The second is to start a series of casts that would prepare his hand and arm for surgery. Those of you who have seen Ethan's hand, whether in pictures or in person, knows that it turns inward. The casts would gently stretch his hand outward, then the surgery would place his hand at the end of his ulna. He would more than likely lose the "thumb" he has now since it's not functional. Dr. F would like to do this surgery between 6 and 9 months of age (but probably closer to 9 months due to Ethan's heart condition). That's only 5 months from now!! After that surgery, we would then have the option to do a 2nd surgery much later down the road that would make his index finger function like a thumb.

I have to admit, I'm still in shock. I had it in my head that there would be no treatment options, but wishing that there were. Now that I know we have an opportunity to help Ethan, it scares me! I'm so afraid that his heart won't be strong enough to handle ANOTHER surgery. We plan to talk to his cardiologist next Tuesday about it all. Deep down, I hope he gives us the green light and says "absolutely". I want so badly to be able to "fix" him. I want him to be able to catch a baseball, or hold a fishing pole. One day, I want his wife to be able to put a wedding ring on his left finger. But I'm scared and sad to think that those things might not happen. If we were to take his heart out of the equation, I would send him to the OR tomorrow. But the reality is that everything we do now has to take Ethan's heart into consideration and, given the choice, we would obviously protect that over anything else.

I continue to pray for the restoration and healing of Ethan's heart. Now, I pray that we would be wise about doing anything that may compromise that process. We still need, and covet, your prayers. The truth is that, yes, we've come A LONG way but I'm constantly reminded that we still have a long road ahead of us. Thank you for walking with us so far; please continue to stay close.

Tuesday, July 14, 2009

CHD Symposium

A friend informed me of this great event happening at Duke in a couple of weeks. I'll be there...will you??

Wednesday, July 8, 2009

Four Months Later

You've come a long way, baby!

Rex Hospital - March 8, 2009

Happy at HOME - July 8, 2009

Enough said. Happy 4 month birthday, Ethan! We love you.

Sunday, July 5, 2009

Ethan's NEWEST Trick!

Check out my little man:

That's right, y'all....Ethan is finally starting to figure out the bottle!!! While I was busy falling off exam tables and getting my scalp split open, Ethan was rocking it out at feeding therapy with Daddy and Mrs. T. So much so, that we decided to try the bottle with him at home a few days later, and he ate like a champ! We've given it to him at least twice a day since then and he really, really likes it. He even does the "I'm-hungry-put-the-bottle-back-in-my-mouth" cry when we take it out. LOVE IT! We're so proud of him and can't wait to see how much progress he'll make.

Now, you may be wondering, "So, can you do away with the feeding pump?" and the answer is not yet. He's only taking about an ounce through the bottle and is currently up to almost 3 ounces at each feeding. Until he can take full feeds by mouth, consistently, the pump will still be around. BUT, I'm so excited that he has made such great gains in only a few days; he is well on his way!

We hope y'all had a great weekend filled with fun, friends, and fireworks! We definitely did, and I'll be posting pictures of Ethan's first 4th of July soon. Stay tuned!
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