Snow, Snot, and a Splint

As you can probably tell by the title of this post, it has been an interesting weekend!

It all started on Thursday, when we decided to keep Ethan home instead of going to Mandy's. He had been fighting a cold and things weren't getting any better. Jeramie stayed home with him and spent most of the day wiping Ethan's nose. He was SO congested; it was absolutely pitiful. He didn't sleep well Thursday night so, thankfully, Jeramie was home again with him on Friday. I woke up Friday morning with a horrible head cold, but went to work anyway.

Later that morning, I got a voice mail from Jeramie and it went something like this:

"Hey babe. Just wanted to let you know that Ethan's cast has slipped and I think we need to have someone look at it..."

Are you freakin' kidding me?!

If you remember, we had just taken him in on Tuesday to have #3 (I think... I've lost count) put on. This one didn't even last 3 days! Jeramie was such a trooper and took him to Dr. F's office by himself. Dr. F. was in the OR at the time, but a call was placed and he recommended that we 86 the cast idea. That's what I'm talkin' about. This time a splint was made to fit Ethan's arm. It's removable, although the only time we take it off is to adjust the fit. When it slips, we fix it. No more rushing out to Durham, afraid we'll lose the cast. No more saws and terror-filled screams. No more casts.

The new splint AND a cute little baby bottom sticking up in the air!

The rest of the day on Friday, I heard about the snow storm that was headed our way and blew my nose about 100 times. By the end of the day I had horrible ear pain, my throat felt like it was on fire, and my head was throbbing. I eventually took myself to the doctor, only to be told I have a cold. "See what happens over the weekend, and call on Monday if you're not any better", she says. Twenty-five dollars later, I was on my way home.

It began to snow later that evening. I have to admit, I felt like a giddy little girl. I kept looking out the window, hoping it wouldn't stop. We woke up Saturday morning to a winter wonderland. It was absolutely beautiful. There's just something about snow that makes such an ugly world look fresh and clean again.

Ethan and I were pretty much a mess all day on Saturday with our colds. Between the two of us, we've gone through an entire box of tissues! We did manage to go out in the snow for a little bit, though.

Surprisingly, Ethan didn't hate it! I think we'll count his first experience with snow as a success!

Later, we played some indoor football...

...okay, so not really. But it does look like someone is ready for the Super Bowl next weekend!

Today has been another relaxing day at home. Ethan decided to show off this morning and was sitting up in his crib when we went in to get him! That was definitely a first, and it looks like we need to spend some time lowering his crib mattress.

Jeramie and I went out to play in the snow while Ethan was napping and we created Ernest. We introduced Ethan to him once he woke up.

"Who are YOU?! And why are you wearing MY vest??"

Overall, it has been a wonderful weekend! I do wish I felt just a tad bit better so that I would actually be productive while we're stuck inside, though. Isn't it ironic that I complain about wanting rest when life is busy, but then have a hard time resting when life allows it?

With that said, I think I'll go snuggle up with my hubby, box of tissues in hand. Y'all stay warm!

Writer's Block & Building Blocks

So, I've had a bad case of writer's block lately. There has been a lot going on here on Plum Frost Drive, but I've not had the words to put it on paper the internets. However, since this blog is basically Ethan's baby book, I feel like I should be a little more diligent about making note of various milestones, appointments, and other life events along the way. This is Ethan's story, and I hope he can look back on it one day with an awe and appreciation for how far he's come.

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I'll start with our good friend, the cast. It seems as though the slab of plaster wrapped around Ethan's arm is not content with staying where it should. It only makes sense, though. As the swelling goes down, the cast becomes too big, thus slipping out of place. We haven't called the surgeon yet, but I know we're just delaying the inevitable. I would be very surprised if Ethan doesn't need a new cast in the next week or so. That is definitely a bummer, with a capital B.

Thankfully, it doesn't seem to bother him at all. At least, not nearly as much as the molars that are trying to break through his swollen, inflamed gums! I feel so bad for him, and I'm glad we don't remember that part of childhood.

I am so proud of how well he's doing, in general, though! Each day he is thismuch closer to crawling. But, don't be fooled. Just 'cause he can't get around on all fours yet doesn't mean he can't get anywhere! He has mastered the art of butt-scooting and we're having to keep a much closer eye on things he can get into.

We haven't gone to any appointments in the past two weeks (what?!), other than our weekly therapy visits. It has been a nice break from doctors' offices, but Ethan will be going to an eye specialist next week to look into treating a possible blocked tear duct.

I still can't believe that he is almost one. A few days ago, someone asked us how old he is. Instead of replying with "10 and a half months", Jeramie said "he's almost one". That is so crazy! He is looking more and more like a little boy these days. See for yourself in this new favorite picture of mine:

I think it's evident that Jeramie and I had more fun with the blocks, but it made for a super-cute picture; don't ya think?

Gosh, I love that boy.

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In other Tri Mulli news, we're planning to put our house on the market sometime next month. We had our realtor, who is also a friend of ours, come by on Saturday to do a walk-through. We don't have that much to do to get it ready, just a few projects here and there.

We have three main goals/reasons for moving: 1- lower our monthly mortgage payment (hopefully), 2- get out of Raleigh city limits (maybe a little closer to Durham), and 3- get out of a HOA (read: an unnecessary bill each month). I am a little nervous about the whole deal, but I have an overall sense of peace that things will work out just fine. If you know of any (cheap) houses for sale or rent from Garner to Apex, let us know!

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I'm off to put some stamps on birthday invitations and enjoy a quiet, relaxing night at home. Thanks for checking in; y'all have a good night!

I know I'm biased...

...but he...

...is so...

...stinkin' cute!

Ethan vs. The Cast

Today's visit with the orthopedist didn't exactly go as we hoped. I don't know what we were hoping for, specifically, but I'm sure that the appointment was the complete opposite of whatever it was. I couldn't even talk about it at dinner tonight, but I need to process it. So, here it goes.

It took one look for the nurse and resident to decide that Ethan definitely needed another cast. I think deep down I hoped they could somehow save the old one ...like the IV, remember?

Yeah, not so much.

The nurse went as far to say that had we waited until Tuesday to bring Ethan in, the cast would have probably fallen off completely (read: weekend ER visit). I'm thankful they were able to fit us in on a Friday afternoon, but I dreaded the whole thing altogether. After much discussion, we decided that Jeramie would hold Ethan while they took off cast #1 and replaced it with cast #2. I think that worked out better than laying him on a table, but it was still not pretty.

The second the resident turned on the saw, a look of sheer terror came over Ethan's face and he screamed, and screamed, and screamed. Absolutely nothing we did helped. I stayed low to the ground; a) to try and soothe Ethan by stroking his flailing head, and b) because I seriously thought I would pass out. Just the thought of seeing his freshly operated on arm, pin and all, made me queasy. Needless to say, I didn't look. I asked Jeramie what Ethan's hand looked like without the thumb and his reply was "it's just different."

I'm really trying to be OK with "different", but I don't like it. At all.

Ethan calmed down a bit once the cast was finally removed, but he started back up again when they began to re-cast his arm. I'm not sure who was sweating more: Jeramie, Ethan, or that poor resident. Ten minutes later, cast #2 was on but Ethan's fingers were purple. We waited a bit to see if that would change, but it never did.

So, enter resident and nurse (with the saw) and commence terror-filled, agonizing screams.

The resident slit the side of the cast to relieve some of the pressure, then began to re-wrap it. Thankfully, Ethan's fingers pinked up pretty quickly once that change was made.

Thirty minutes after we walked into the room, we were done.

The best word I can think of to describe the appointment is traumatic; Jeramie and I have both shed tears over it since leaving this afternoon. (Yes, my husband cries, and I'm quite proud to admit it.) It seems as though Ethan is back to his normal self now. He played quite a bit (even belly laughed a few times!) once we got home and is now upstairs, sleeping soundly.

Today only instilled even more dread and fear for our next appointment in 5 weeks. I pray that Ethan's new cast stays put until then, and we won't have to subject anyone to another appointment like today's.

Ten Months Later

Hello all. It's Jeramie. Joye was kind enough to let me "guest write" on her blog. So, here goes.


Ethan is ten months old today.


It would be trite and a little cliche for me to say that the last ten months have been a blur.

They have been... amazing. They have been awful and beautiful and tragic and heart-wrenching and humbling and heart-warming.

There have been tears of sorrow and of elation. There has been doubt and hope and fear and faith. There have been hugs and prayers and well-wishes.

There have been rooms full of silent friends and family as "the news" sank in. There have been rooms full of those same friends and family rejoicing with us when Ethan pulled through... yet again.

There has been so much joy amongst our friends and family as we watch him grow. He has exceeded expectations at every turn and he continues to amaze us.

He has taught me things I thought already knew. He's taught me that physical deficiency does not equal weakness. He's taught me to hurt and to hope. He's taught me to love in a way of which I never knew I was capable.

By way of Ethan's "stats" he's 28 1/4 inches long, 24 lbs. 6 oz. and his head is 45 cm. He has a total of eight teeth and we're pretty sure there are more on the way right now. He has grown beyond everyone's (even his cardiologist's) expectations.



It seems like he develops a new "trick" every day. Lately he's learned to wave. He waves hi/bye to just about everyone (and everything). He even says "bah" sometimes when he does it. We're pretty sure it's a coincidence but it's still really cute.

His official first word was "Mama" which makes Joye exceedingly happy. I think she thinks she won some sort of competition of will-Ethan-say-Mama-or-Daddy-first?, but I'm pretty sure that's not a real thing and it doesn't matter.

(Full disclosure: If he'd have said "Daddy" first, it would have been a real thing and it would have mattered. But it's not, and it doesn't.)

I would be remiss if I didn't take this opportunity to thank everyone reading for all of your prayers and support over the last ten months. It is truly beautiful the kind of love by which we are surrounded. Thank you.

There are so many things I love about being a Dad and in honor of Ethan's tenth month, I'll leave you with ten things I love.

I love being called a dad.

I love saying "my son".

I love his goofy "stinky face".



I love the way he tilts his head to the side as if he just wanted to see what the world would look like that way.



I love squeezing his chunky little thighs into his pajamas and kissing him good-night.



I love drying him off and cuddling with him after his bath.



I love showing him off to everyone who will look his way.



I love to watch him as he learns something new.



I love to see how excited he gets when Joye and I walk into his room in the morning.



I especially love his laugh (even though he's kind of stingy with it)

Happy ten months, Ethan. I love you very much.



-The Daddy

Day 2

I think it's safe to say that today has been a much better day than yesterday. Although Ethan had a rough night last night, he's been able to get TONS of rest today.

We were discharged around 11:00 this morning, which was a nice surprise. Usually, "getting discharged in the morning" means we'll go home sometime around 1:00 or 2:00. We were able to see many of our favorite Duke staff members before leaving, which was also nice considering many of them feel like family to us!

Ethan has taken 2 really good naps since we've been home. The 2nd one lasted a little over 3 hours, and now he's hanging out in the living room with Daddy and Grandma B he's back in the bed, hopefully for the night. He definitely has bouts of extreme fussiness, and we're still working out the most effective pain medication schedule for him. I'm pretty sure it's going to involve getting up at 12:30 and 4:30 tonight/tomorrow morning, though.

I'm going back to work for a full day tomorrow, a 1/2 day on Friday, then full-time next week. I pray Ethan recovers quickly and we can really enjoy these last few days together.

I'll leave you with a few pictures of our journey over the past two days...

In the elevator at Duke EARLY Monday morning

"Here, Daddy, let me fix that for you."


Goofing off in the holding room


"What are you wearing and where are we going?!"


My first time seeing and holding Ethan after surgery.


My sister surprised us with a visit! She brought along this huge balloon that played "Don't Worry, Be Happy" 27 times on the ride home from Duke this morning.


Playing with his balloon, post-op


Our friends, John & Dana...and a very tired little boy


Going home! How in the world did we manage to accumulate so much stuff for a one night stay?!


"Hey girl... you know you like my Duke blue cast and bright green sling."

Thanks, again, for praying us through all that. Y'all are the best!

Whoa.

Okay. I'm going to try to make this as brief as possible (seriously this time). I'm at my house with my mama, while Jeramie and Ethan are holding down room 5320. Hopefully everyone can get some much needed rest tonight, which would involve actually going to bed at a decent hour.

We've been up since 3:45, got to Duke at 6:00, went into a holding room around 6:30, Jeramie took Ethan into the OR around 8:15, surgery started at 8:40, met with the surgeon after surgery at 11:00, Ethan recovered in the PACU (post-anesthesia care unit) until 12:30, and we were taken to our room on the floor around 1:00.

Whoa.

The surgery went as well as it possibly could have gone. It appears that Ethan's arm is developed as much as a typical arm, it's just missing the radial bone. All of the tendons and arteries were right where they should have been, and that enabled the surgeon to achieve the most ideal amount of correction. That, in and of itself, is a HUGE praise! Not to mention the fact that Ethan handled the anesthesia like a champ and had NO problems being extubated. His heart rate got unusually high in the recovery room, but that seems to be leveling out now. Overall, he did great!

Since we've been out on the floor, though, he's been extremely cranky. He has a full arm cast and there's actually a pin in place, holding a specific tendon in its new location. I know, right. I'd cry too. He's getting 2 types of pain medication at various times, but he is still not a happy camper.

If you've been following along on Twitter (or on the bottom, right-hand side of the blog) you noticed that we've had a bit of a stressful evening. Ethan's IV was occluded and we thought he would lose it (read: have to be stuck again, which is not an easy process). Thankfully, an angel from the IV Team came by and was able to save it! The 30, or so, minutes it took to do that were excruciating, though. Ethan screamed the entire time, which caused his heart rate to jump up and made him get all hot and sweaty. He was so mad that he scratched up his right eye and the side of his face with his plastic ID band. It was an absolute mess. I took a break from his bedside, hopped on Twitter, and asked y'all to pray. And pray you did. Literally, within 10 minutes, the IV was saved and re-wrapped, and Ethan was calm in my arms. So, thanks for that.

That's basically where things are as of right now. When Mama and I left the hospital, Ethan was snuggled up with Jeramie, and our good friends John & Dana were there visiting. I got a picture message on the ride home that showed Dana had taken over the holding duties, and Ethan was sleeping sweetly and soundly in her arms. I felt much better about leaving once I knew that was he was settled (hopefully for the night).

Thank you, thank you, thank you for praying so hard for us today. I'm not even lying when I say that I could feel the effects of that almost instantaneously. Please keep them coming. Pray that Ethan would sleep well through the night, allowing his body to get all the rest it needs for a quick recovery. (It would also give Daddy some much needed sleep!) The goal is to be discharged tomorrow, so pray that nothing stands in the way of that!

I'll be back at Duke bright and early in the morning, and will be sure to give updates throughout the day.

Until then... this exhausted, drained, filled-with-gratitude mama is off to dream some sweet dreams about her sweet boys.

G'night, y'all.

#6

On Monday morning, Ethan will be wheeled into the operating room for the 6th time in almost 10 months. Is it just me, or does that sound absolutely crazy? I'm sure I know there are babies out there who have endured way more than Ethan has, but 6 surgeries in 10 months just seems ridiculous.

Thankfully, Dr. I. gave us the "go-ahead" to proceed with this surgery. At our appointment on Thursday he just kept commenting on how "fantastic" Ethan looked. But, we all know that if looks were an absolute indication of a healthy heart, Ethan's would be as healthy as anyone's! It is somewhat unusual for a heart baby to not have any trouble gaining weight, which Ethan has clearly not had any problems with! Also, since his last surgery, he has lost that bluish/pale color of his skin, so those chubby, rosy cheeks give the impression that everything is just fine.

If only it were that easy.

Ethan's outward looks are definitely worth noting, but it was his literal inward appearance that Dr. I. was more concerned with. We took him back for an Echo first thing, and there were times I found myself holding my breath. I was nervously anticipating the results... whether they be good or bad. Ethan cooperated beautifully; a little Elmo on TV and some teething rings did the trick! He laid there as if he knew what was going on.

When Dr. I. came back into the room and gave us the results, I thought I was going to jump out of my skin. I've cried every single time we've been to his office but, on Thursday, I hugged him instead. It was just an automatic response and now I may feel just a tad bit silly about the whole thing. He informed us that the pressure in the spot where the conduit is sewn into the pulmonary artery was at an all-time low of 38!! This is down from the mid 50's, where it was just in November.

(To give you a reference point: this number was in the low-to-mid 100s before Ethan's 2nd heart surgery in September. This is the same number that will play a huge role in deciding when his next heart surgery will be.)

38?! Is our God good, or what?

In addition, the Echo showed that the left ventricular function looks great! Dr. I. did note that the function of Ethan's right ventricle is still poor, and it may never recover. My biggest prayer, since April, has been for restored function of that ventricle and, more than ever, I would like for you to join me in praying that same prayer.

Overall, it was an excellent visit! Dr. I. spoke with the pediatric cardiac anesthesiologist while we were there, and he also agreed that Ethan would be OK to have the surgery on Monday. Right before we left the office, Dr. I. informed us that he would be the cardiologist on service at Duke next week. As if God hadn't already shouted at us, "It's gonna be alright", we definitely heard Him loud and clear then.

So, now, I'm back in "get-ready-to-be-at-Duke" mode. I've cleaned the house, done some laundry, and started making lists of what we'll need to bring. I've cried a little, prayed a lot, and felt confident that Ethan will be in the absolute best hands.

Thank you for your prayers up to this point; I can pinpoint specific answers to prayer, and I stand amazed. Please continue to keep our sweet baby boy in your thoughts over the next few days. It's easy for me to dismiss this as "well, it's not heart surgery", but there are still risks and possible complications. Pray for the surgeon, Dr. F., that he would make wise decisions during the operation. Pray for the nurses who will be taking care of Ethan throughout the day and night on Monday and Tuesday. Pray for me, as I'm mourning the loss of having a baby with 10 fingers and 10 toes (Ethan will lose the "thumb" on his left hand during this surgery.) Above all, pray for this little guy...

...that he won't have any trouble being extubated, and that his vocal cords would be spared of any damage from the tube. That he won't experience any more pain than can be managed by moderate pain medicine. That he'll recover quickly and be back home in his own bed Tuesday night.

Right where he belongs.

Reflections

Happy New Year! I can hardly believe that today is the first day of 2010.

Ten years ago I was a senior in high school, thinking about pursuing teaching, and deeply involved with my church youth group. I was innocent, shy, and painfully optimistic. I was in the midst of living a fairly easy life and knew very little about the hurt and tragedies that were happening outside of my bubble. I had shared my heart with a few special guys, praying that I would find the one who would be worthy of marriage. I was preparing to leave home, for the first time in 18 years, to attend college at UNC-Greensboro. I had no idea what things God had in store for me.

Fast-forward five years, and I had just graduated from college with a degree in Deaf Education. I began my first job, taking over for a teacher who was going on maternity leave. I had my girls: Brandi, Michelle, and Tara, with whom I had learned many life lessons during our college days. I lost some of that optimism, as we came face-to-face with more than a few harsh situations. I learned that life was not the easy road it had been just a few years prior. Also, I was just weeks away from meeting my future husband, although I could have never seen him coming.

And, now, here I am on January 1, 2010. The past five years have come with its fair share of lessons. I've learned (and am still learning!) what it means to be someone's wife, as I married my perfect man on June 24, 2006. We've learned how to live life together; we've bought our first house, comforted each other during the loss of a loved one, and discovered the sheer joy of becoming parents.

I can think of many events over the past 10 years that have had a profound effect on who I am, but none of those can even compare to the miracle of creating new life. I absolutely loved being pregnant and often miss that time of my life; however, being able to love on and cuddle with my son is simply amazing. His journey into this cruel world was not an easy one, and that makes his life that much sweeter.

This past year has taught me so many things about myself. I've discovered a desire for writing and home-making, among other things. I've experienced emotions I never knew existed; there's been pain, a deep piercing pain, that I wouldn't wish on anyone... but there has also been deep, intense, beautiful love.

I always knew I was stubborn, but I've learned just how strong-willed I can be. At times, I wished that Ethan's life would be spared in place of mine. But, thanks to an Almighty, healing God, that wish need not come true.

Now, I have the privilege of being the mother to a strong, miraculous, (almost) 10 month old little boy. My life has new meaning, new purpose. Regardless of how hard things are, how tired I am, or how little money we have, 2009 has taught me that I am, without a doubt, absolutely blessed.

I've come a long, long way my friends, and twenty-ten will be an incredible year.