Saturday, March 13, 2010

This and That

What a busy, productive, exhausting weekend it has been so far! We are putting our house on the market next week, so we're finally getting around to doing all the things we should have done 3 years ago. Oh well, we'll be able to enjoy a completely clean and organized house for a little while at least.

(Yes, I'm speaking as if I know our house will sell. And, yes, I understand that it's probably going to take some time. But I also have this eerie sense of peace about it all; so not typical of my worry-filled personality!)

Anyway, moving on... (pun intended)


Now, for the biggie... the orthopedic update. We took Ethan to see Dr. F. a couple of weeks ago about the numbness in his index finger. Evidently, Ethan's case has really made his head spin. I can tell that he feels absolutely horrible that this happened, and he said this has never happened to him in all his years of doing this particular surgery. It kind of reminds me of Dr. Jaggers after he told us that would need a pacemaker. One thing we've learned is that our little guy doesn't do anything by the books.

Dr. F. referred us to another orthopedic surgeon, Dr. R., who specializes in hand/nerve issues. He and Dr. F. both believe that the median nerve has been damaged in some way, but the question is "how?".

Scenario #1 is that the nerve has been lacerated and will need to be surgically grafted back together. If that is the case, it would be better to wait 6 months or so to let the nerves, and Ethan's hand in general, get a little bigger.

Scenario #2 is that the median nerve is being compressed somehow. If that is so, then it is better to do surgery to relieve the pressure, like, yesterday.

So, you can see that we're kind of stuck right now. Dr. R. is leaning more towards it being a compressed nerve, which is actually the better scenario of the two. Due to that, he feels that it would be best to go ahead and plan another surgery to see what's going on. We go back to see him on April 5 and he will examine Ethan's finger again to make sure there are no signs of it recovering on its own.

If things are still looking about the same, we will schedule surgery #8. It will be exploratory, in a sense, but he will also do the repair for whichever scenario it may be.

Currently, Ethan's finger looks great! We change out the dressing every other day, and it looks a little better each time. I think a nail is starting to grow back, so that will do a lot for making his finger look "normal" again.

Now, we just wait...


Developmentally, Ethan is doing fantastic! Just this past week he began to pull up on things, and even cruised a bit in his crib this afternoon. He will get on his hands and knees, but still prefers the butt-scooting method to getting where he wants to go. And let me tell you... he goes wherever he wants!

His favorite phrase, by far, is "uh oh". He will purposefully throw something off of his high chair tray, just to peek over the edge and say "uuuuhhhh ooooohhh". It is hilarious.

This is also the first time in 12 months that I feel like I have a child who eats. He finally opens up and tries to eat whatever we give him! His menu this week has included samples of: cheese, veggie sticks, pancakes, a Cookout milkshake, birthday cake, potatoes and carrots from my mama's beef stew, a french fry, and a variety of pureed baby foods. I can't even believe I just typed those words! Not even a month ago, the idea of him eating part of a pancake was some distant fantasy. Not anymore!!

I am so, so proud of him and can't wait to see what another month brings.


If you made it this far, nice job :) Thanks for sticking with me through all of that. We covet your prayers over the next few days, and I'll be sure to let y'all know how everything goes.

Until then...

Thursday, March 11, 2010


Ethan's 1st birthday has come and gone, and I can't help but feel like I did after my wedding. Partly relieved, partly sad, but mostly excited for what the future holds.

We had about 100 of our closest family and friends come out this past Saturday to celebrate our little miracle. It was absolutely breathtaking to have all of those people in the same room, and I definitely cried when everyone began singing "Happy Birthday". It was surreal.

Jeramie's co-worker, Stephanie, came to take pictures of the party. That was probably one of the best decisions we made. Not only did we not have to worry about "getting the shot", but the pictures I've seen so far are 1,000,000 times better than what we could have taken! Here are a few that we did take, though:

Me & Bobby
This was one of Ethan's roommates in the PCICU. Please excuse my red, watery eyes. I got justalittle emotional when I finally got to meet this handsome little guy!

Me, Charlotte, and our boys
This girl is like a long-lost sister. She knows my heart in a way most people will never understand.

Ethan and The Cake
He did SURPRISINGLY well, considering his lack of eating skills over the past 12 months. SO proud of him!

I'll be sure to share more as we get them!

On Monday (Ethan's actual birthday), Jeramie and I took the day off of work to spend it together as a family. Of course, it involved an appointment at Duke with a 2nd orthopedic surgeon! It's only fitting that we spent part of his birthday at the place that saved his life 365 days prior.

(I promise I'll update soon about the appointment, including a whole big shebang on his hand situation, as well as details about his upcoming surgery on TUESDAY.)

After leaving Duke 3ish hours later, we were determined to find a park! By the way, for all of you Raleigh people, Pullen Park is closed until 2011, or something crazy like that, for renovations. You know, just in case you were planning to go spend your child's 1st birthday riding the train and carousel. Don't.

We got a little turned around trying to find park #2, but finally ended up at the Walnut Street park in Cary. This wasn't before we stopped at Dairy Queen to get some ice cream to share with the Birthday Boy!

We had a wonderful, joyful time celebrating our son! Thank you to everyone who made this first birthday so special. We love you guys and we look forward to many, many more days like the ones we just had.

Be the Match

Hey y'all! I am interrupting our regularly scheduled programming to share something with you...

A co-worker of mine has a brother, Paul, who was diagnosed with multiple myeloma back in December, at age 26. They are in desperate need of a bone marrow match right now, as they have not been able to locate one either within family or through the national registry.

A representative from the Be the Match Foundation will be at my school, A.B. Combs Elementary, tomorrow from 4:00-7:00 p.m. It is totally free to join the registry! All it takes is a few minutes of your time and a simple swab of your cheek. You may also remove your name from the registry at any time. Not only could you possibly save the life of Sara's brother, but the lives of many others who are in need of this precious gift!

If you are in the area, please consider participating in this Bone Marrow Registry Drive! If not, please visit the Be the Match website to find other ways to register.

Monday, March 8, 2010

One Year Later

My sweet, precious Ethan:

Today you are a year old. Everyone told me how quickly the first year would pass and I've learned that there is so much truth to that. The very thought of you overcoming so many obstacles in your first year brings tears to my eyes. Some are sad tears because you had to endure any of that in the first place. Many are happy tears because not only did you live, but you THRIVED, through your first year. Most of the tears, however, are proud ones. Ethan, I am so proud of the strong little boy you are already becoming. I am proud of your resilience, your demeanor, and how unstoppable you are.

Before you were ever born, your Daddy and I prayed for you. We waited for, what seemed like, a really long time to find out that you would be joining our family. While you were growing in my womb, we prayed for you. We prayed for you towards the end of my pregnancy when we learned that there were concerns with your development. When you were born, and we learned that you did, in fact, have an underdeveloped arm, we wept over you and prayed. We cried out to God hours after your birth when the doctors discovered that you also had a broken heart. We pleaded with Him to spare your life and to let us keep the baby we so desperately wanted. Throughout your nine and a half week stay at Duke, through all the worries, fears, and complications, your Daddy and I prayed, as did hundreds of others. We continue to pray for you, and we rejoice over you.

Ethan, there are times I feel like God didn't necessarily answer all of those prayers the way I wanted Him to. When I begin to think that, I stop and realize He gave me exactly what I wanted. For as long as I can remember, I've wanted to be someone's mama. God gave me exactly what I wanted when He gave me you. You fill my life with deeper meaning, and with a joy I had never experienced.

You have taught me more about passion, love, forgiveness, fear, and peace than any other life experience. In just twelve short months, you have taught me what it truly means to rely on our mighty God, and you've tightened the bond between your Daddy and me. You've helped me realize that some things in life just aren't that important, and I'm learning to focus on the things that are.

Regardless of the battles you've fought this past year, you are here with us. You are alive and well! You are so full of personality and I can't help but imagine that you'll grow up to be as funny as your Daddy. You do not let your physical limitations restrict you in any way; many people who meet you for the first time are surprised to learn that you even have a special heart.

I have no idea what the future holds for you, sweet boy. My heart aches at the thought of subjecting you to more pain, more surgeries, more hospital stays. I can't tell you whether God will allow you to remain here on Earth for years to come, or if He'll decide to take you back home. What I can tell you, though, is that whatever comes our way, through the good and bad times, I will be with you. Ethan, I love you so much it hurts. Your life has meaning deeper than I can understand.

So on this day, your first birthday, I can promise you that I will celebrate you today and everyday. I will love you more tomorrow than I do today, and I will focus on the person you are becoming. I will pray that you grow up to love the Lord, that you are able to discover your passions and talents, and that you will not let anyone look down on you for the things that make you different.

Happy birthday, Ethan. I love you, and I am so proud to be your Mama.

Tuesday, March 2, 2010

His future's so bright...

...he's gotta wear shades!

Ethan has had quite the stellar day. It all started with a visit to our beloved cardiologist, Dr. I. We never know what to think when we go in for these check-ups. Obviously, there are no MAJOR problems, but there are so many little things that could be going on, and have the potential to turn into something big. Ethan got the complete work-up today in preparation for his surgery in a couple of weeks: EKG, echo, pacemaker interrogation, and chest x-ray. We don't know the results of the x-ray yet, but everything else checked out beautifully. To say that today's appointment went well would be an understatement.

I was absolutely ecstatic when Dr. I came in to give us the results of the echo. "His heart function looks great," he said. Doubting what I just heard, I asked for clarification, "So, you mean the other 3 chambers look great, but the function of the right ventricle is still diminished, right?". He looked up at me, with a bit of a grin, shrugged his shoulders and said, "No. I mean, it looks great." Holy freakin' cow. Praise GOD!! I did a bit of a happy dance, thanking God for hearing my prayers. Ever since Ethan coded I've been praying for restored heart function, especially for that over-worked right ventricle. Dr. I's words were music to our ears, an answer to prayer, and evidence of miracles all around us. I am absolutely in awe.

Ethan's heart is doing so well that he has been cleared for surgery and isn't scheduled to see Dr. I for 3 months! As if all of that wasn't good enough, he also gave us orders to stop Enalapril, a heart medicine he has been on, basically, since birth. Do you know what this means?!


Well, let me tell you. This means that Ethan is now on ZERO heart medications, other than a 1/2 of a baby aspirin to make sure his conduit doesn't become occluded. That, my friends, is nothing short of amazing. Absolutely, positively, 110% amazing.

Probably the lowest blow of the appointment was hearing from Dr. I that Dr. Jaggers, Ethan's incredible heart surgeon, will be leaving Duke. My heart sinks, and I get all teary-eyed, just at the thought of it. The bond between a heart family and their surgeon is indescribable; I pray that God will bring the right person to Duke to replace, what I view to be, someone who is irreplaceable.

One last little tid-bit for you. During Ethan's echo, the technician wondered out loud about how many of those he's had up to this point. We all joked about what the number could be, and I guess curiosity got the best of her. A few minutes after we were back in our room, she peeked around the door and said, "An even 24." WOW!

Ethan's 1st echo at Dr. I's office - May 21, 2009

Today's echo - March 2, 2010

Crazy, huh?!

Thanks for checking in; we also saw Ethan's orthopedic surgeon this afternoon, but that update will have to wait for now. We've got some last minute things to take care of for Ethan's upcoming birthday bash....I can't wait!!

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