This is just getting comical...

Yesterday afternoon I posted this to my Twitter page:

I'm afraid to think about my awesome weekend plans, for fear they'll be ruined by a trip to the after hours pediatrician.

I should have known better. I should have just kept my big mouth shut. We had (still have) big plans for this weekend. Thankfully, the next update didn't (hasn't) interfered with them too much.

Ethan & I just got home from the after hours pediatrician. Yes, I'm serious.

I didn't even cry when I walked into Ethan's room this morning and found his blankets and body parts covered in blood. When I got a little closer and noticed he had chewed off his finger bandage, as well as the skin on said finger, I didn't even really freak out. In fact, I made some sick joke to myself about him looking a little bit like Edward.

Jeramie and I decided that I would take him to the after hours pediatrician while he stayed home to finish installing our new kitchen floors with our good friend, Nate; it looked as if Ethan needed stitches, and I was worried about it being (getting) infected. Neither of those ended up being true, but the nurse was able to get it cleaned up and re-wrapped. He's now sporting one of those metal finger brace things, thank to my mama's good thinking. I'm not sure why none of us thought of that before now. The doctor did proactively prescribe an antibiotic because the wound is so "high risk" for infection.

On the way home I just had to chuckle. I also had a stern talking to with my little finger eating monster about our plans for next Saturday. Lord willing, it will NOT involve an ER, urgent care, or doctor of any sort ...unless, of course, they plan to come to us in order to celebrate the miracle of his 1st year.

Now, THAT, will be a weekend to remember!

Better.

Thanks for all of the prayers and encouraging comments! I am feeling better today; not 100%, but better. I have some of the best friends and family a girl could ask for, so that most definitely helps!

Jeramie took Ethan to the after-hours pediatrician this morning while I stayed home to get some things done around the house. The doctor decided to stitch Ethan's fingernail back to his nail bed, with the hopes it will adhere to his skin and continue to grow. Worst case, the stitch comes out in 7-10 days and Ethan loses the fingernail. If that happens, though, there will be a better chance that the new nail will grow in properly than if the doctor hadn't tried to save the this one. I hope that makes sense.

Thankfully, the doctor didn't see any signs of infection, so he wrapped it back up and created a mini boxing glove on Ethan's left hand. Our plan is for the bandage to stay put until the stitch needs to come out in a week or so. I'm praying that his finger, skin and nail, will be healed when we unwrap it!

In other news, Ethan woke up from his nap this afternoon with a fever of 103. He has also thrown up 4 times since 5:30 yesterday afternoon, so we're pretty sure he has a nasty stomach virus. I really hope that goes away soon! Despite feeling bad, he still managed to have a fun day hanging out with Jeramie's family who came to visit.

I was able to get out tonight and enjoy dinner with a family that I love and admire. It was so good to talk and catch up, and I think it was just what I needed.

I've got my eye on another early bedtime tonight; here's to waking up tomorrow morning, feeling even better than today.

Blah.

I'm going to go ahead and be up front with y'all; I'm in a really bad mood. Frustrated. Sad. Angry. Bitter. I'm also sleep-deprived, although I plan to fix that with an early bedtime tonight.

It has been almost 7 weeks since Ethan's hand surgery and I've been in tears since Wednesday, wondering if we made a mistake. We have reason to believe that Ethan does not have any feeling in his left index finger (and maybe even the middle one, as well). As if me pinching him as hard as I could didn't give it away, it's painfully obvious by the bloody, lack of skin on the tip of that finger. Why, you ask? Well, because he's been gnawing on it like a chew toy. He seriously bites it SO hard that chunks of skin come off and it bleeds and bleeds and bleeds.

Yesterday, Jeramie made a super padded wrap for it and that did the trick, until we took it off this evening. Not five minutes after we unwrapped his finger, Ethan had it back in his mouth and, this time, he bit so hard that his fingernail is coming off. I'm not even kidding. It's barely hanging on, so I'm sure he'll lose it soon.

I'm so frustrated.

As if he doesn't have enough to deal with, now let's add a numb, fingernail-less finger to the mix. Can we get a freakin' break, please?? We've spent the past 3 weekends in some sort of ER/hospital/after-hours urgent care facility, and it looks like this weekend won't be an exception to that. I can't even explain how angry that makes me.

I'm so sad.

I can't shake this looming feeling that we've made some horrible mistake. Sending Ethan into the operating room for two life-saving heart surgeries wasn't an option. Sending him in for a pacemaker: not an option. Going in for a Broviac or the Nissen/G-tube? Not optional. Putting him under to have his arm corrected, however, was very optional.

Granted, there was a window of time in which the surgery should have been completed, but did it need to happen at all? Would Ethan have learned to function just fine with his arm the way it was? Did we really need to put him through this? Maybe he would be crawling by now if we had just left him alone. He definitely wouldn't have a bloody, skin-less, numb finger, or a scar that looks like baseball stitching going down half of his arm. He would still have 10 fingers and would probably be doing just fine.

That makes me so incredibly sad. I hate the way I feel when I think about all of that; it makes me sick to my stomach to think I may have caused my son some sort of unnecessary harm.

I'm beginning to feel bitter, and I really hate that.

I thought I was past the "why us?", "why not them?" stage, but this situation has brought all of those thoughts and feelings to the forefront.

I would really appreciate it if you guys would say some prayers for us. Pray that feeling would be restored to Ethan's finger (best case is that this is just a side effect of the healing process). Pray that Jeramie and I would have the knowledge and skill set to care for his hand in the meantime. Pray that I would find peace and encouragement as I deal with such a hard, frustrating time in my life. Pray for my heart, that it won't become hardened as a result of these recent trials.

Pray for us. We need it in a major way right now.

Jump Rope for Heart

I am so humbled right now. Just a little bit ago I was checking my Facebook messages, like I usually do, and read the following:

Hi Joye,

John's school is doing AHA's [American Heart Association] Jump Rope for Heart again this year. John would like to jump in honor of Ethan.

How special is that?! I've known Amy, John's mom, for years and I'm so touched that her son would like to honor my son is such an awesome way.

Please consider visiting his "HeartQuarters" and help him raise money for such a great cause!

To the Britt Family: Thank you. This means more to us than we can express!

Happy Heart Day!

I get the feeling that Valentine's Day is going to be a pretty exciting, fun-filled day in the years to come. Not that it wasn't before; I'm married to a super-romantic guy and he always knows how to shower me with little surprises to show his love. But, I think from this year forward, it will be a different type of exciting.

As a heart mom, I tend to get a little mushy-gushy about all things "heart". Just a quick walk into Target, and I'm ready to buy every heart-shaped item I can get my hands on! It will forever be a symbol of who we are as a family. So, I knew that I wanted this Valentine's Day to be extra special, and it most certainly was.

Earlier in the week, I received a special piece of mail from the Governor of North Carolina, Bev Perdue. It had been my personal mission over the past two months to have her declare February 7-14 as Congenital Heart Defect Awareness Week for our state. After a few persistent e-mails, with no response, I felt defeated. We were already halfway through the week and I thought, "Well, we'll try again next year." Imagine my surprise when I checked the mail Thursday evening and found a signed proclamation, state seal and all. I ran from the mailbox, back to my house, with tears in my eyes. I sobbed as Jeramie read it aloud. I was so proud, and so very emotional.

To Ethan and our North Carolina heart friends: Olivia, Charlotte, Audrey, Angel Jack, Angel Kelis, Jordyn, Angel Malin, Angel Hayden, Jay, and Kylee... this is for you:

(Side note: Can anyone tell me if the state seal usually has a red & blue ribbon attached to it??)

After waking up to a couple of sweet surprises from my boys this morning, I went to Visio Dei and spent some much needed time worshiping with my church family. Then, Jeramie, Ethan, and I ventured out to the Build-A-Bear Workshop to make a special friend for Ethan. Our main purpose was to donate to the Children's Heart Foundation (CHF). Did you know that through the month of February, you can choose to donate $1 to the CHF when you check-out? It's an easy way to help raise money for the foundation, and have a little fun while you're at it!

Meet Dr. Goodheart, Ethan's newest surgeon.

He won't be using a scalpel anytime soon, but we hope he'll keep Ethan company when he's around those who will!

Later, we had a family lunch at Moe's, where we discovered that Ethan is a fan of guacamole; who knew?!

To end the day, Jeramie cooked an amazing salmon dinner and I baked a cake in the shape of a... yep, you guessed it; a heart! All in all, it has been a fantastic, fun, and very special day.

I am thankful for a husband who loves me with such grace and forgiveness, and for a son who fills my life with unspeakable joy.

Happy Valentine's Day, from the bottom of Ethan's mended little heart.

A Mother's Perspective

I came across this poem a few days ago and just felt compelled to share it. I can give you statistics and facts (as I've been doing all week via Twitter), and I can probably give you a better lecture on the human heart than your biology teacher did. But, I thought this poem perfectly expressed what I can't always tell you. The feelings and emotions that come along with being the mama of a heart baby are not easy to communicate, and can even be misunderstood. I hope this offers a little more insight into my heart.

You passed me in the shopping mall
(You read my faded tee).
You tapped me on the shoulder, then asked
"What's a CHD?"
I could quote terminology,
There's stats that I could give.
But I would rather share with you
A mother's perspective.

What is it like to have a child with a CHD?
It’s Lasix, aspirin, Captopril.
It’s wondering, "Lord what’s your will?"
It’s monitors and oxygen tanks,
It’s a constant reminder to always give thanks.
It’s feeding tubes, calories, needed weight gain.
It’s the drama of eating, and yes it’s insane!

It’s the first time I held him
(I’d waited so long).
It’s knowing that I need to help him grow strong.
It’s making a hospital home for awhile,
It’s seeing my reward in every smile.
It’s checking his sats as the feeding pump’s beeping.
It’s knowing that there is just no time for sleeping.

It’s caths, x-rays and boo boos to kiss.
It’s normalcy I sometimes miss.
It’s asking, "Do his nails look blue?"
It’s cringing inside at what he’s been through.
It’s dozens of calls to his pediatrician
(She knows me by name; I’m a mom on a mission).
It’s winters homebound and hand sanitizer.
It’s knowing this journey has made me much wiser.

It’s watching him sleeping, his breathing is steady.
It’s surgery day and I’ll never be ready.
It’s handing him over
(I’m still not prepared),
It’s knowing that his heart must be repaired.
It’s waiting for news on that long stressful day.
It’s praying, it’s hoping, that he’ll be okay.

It’s the wonderful friends with whom I’ve connected,
It’s the bond that we share; it was so unexpected.
It’s that long faded scar down my child’s small chest.
It’s touching it gently and knowing we’re blessed.
It’s watching him chasing a small butterfly.
It’s the moment I realized I’ve stopped asking "Why?"

It’s the snowflakes that fall on a cold winter’s day,
(They remind me of those who aren’t with us today).
It’s a brave little boy who loved Thomas the train,
Or a special heart bear, or a frog in the rain.It’s the need to remember we’re all in this plight.
It’s their lives that remind us we still need to fight!
It’s pushing ahead amidst every sorrow.
It is finding the strength to have hope for tomorrow.


-by Stephanie Husted

The Rest of the Story...

You may already know that Ethan was admitted to Duke late Saturday night. He was having some difficulty breathing around 5:30 that evening and, after placing a call to the on-call cardiologist, everyone decided that he should be seen. We never really gave a ton of details about what happened, so here we go...

About 30 minutes before all the commotion happened, we were feeding him some peas at home. Admittedly, I gave him a spoonful before he was ready. It took him by surprise, and then he started gagging and choking. This will happen every now and then but he's usually able to recover from it just fine. On Saturday, however, he couldn't quite get it together. His cry was abnormal; it was as if he couldn't take in a deep breath in. We eventually got him to calm down, but even still his breathing pattern was not right. When he would try to yawn he stopped short of taking a deep breath. That's about the time we made the call.

Ethan was worn out before we even left for the hospital.

We took him to the new-to-us Pediatric Emergency Department at Duke (which is really nice, by the way!) and got the VIP treatment. It was, literally, no more than 3 minutes between the time we checked in, and the time we were put in a room. The doctor came in just a little bit after that and we were eventually wheeled off for a chest x-ray. (I say "we" because Ethan had fallen asleep on my chest, so the both of us took a ride down to radiology, gurney and all.)

"Just making a few calls to inform my peeps."

The results of that x-ray prompted the ED doctors to get IV access and start Ethan on some antibiotics, as they were fairly certain he had aspirated.

Now THAT was a scene.

Picture this: Ethan is asleep on my chest, again, and two nurses walk in with the IV kit. I'm secretly hoping that he'll sleep through the stick (I know, I know...), but that was most definitely NOT the case. He woke up, screaming bloody murder. The first attempt was not a success. Ethan screams louder. The 2nd attempt? Not successful. The nurses switch sides, hoping to find better access in his other foot. About this time, the ED doctor walks in to tell us that they're going to admit Ethan for overnight observation. I held it together, until he walked out the door and the nurses went for stick #3. At that point, Ethan began screaming, I started sobbing, and our poor nurse is wiping her tears with her sleeve, all while attempting to get access. We were a mess.

Finally, on the 4th try, they were successful. However, not 10 minutes after all of that, the floor doctors came in to tell us that they did NOT think he aspirated, and therefore would NOT be needing IV antibiotics. Are you freakin' kidding me?! Our nurse was livid, and later apologized for "wearing her heart on her sleeve", but said watching Ethan and I cry together just broke her heart. I appreciated the fact that she took a personal, emotional interest in our situation.

A few hours later, we were in our room on the 5th floor, with IV access (but not for long) and no antibiotics. Ethan and I shared a bed through the night, which was a new experience! We spoke with many doctors; some who even had first-hand experience with the last time Ethan aspirated (read: coded). Based on that, no one was quick to rush us home. We spent the better part of the day at Duke on Sunday, making sure he was breathing fine, and working up our confidence to take him back home. By that evening, he was feeling much better and even made an appearance at a Super Bowl party!

Taking a wagon ride around the 5th floor.

I am thankful it was a short stay, but I am even more thankful that we have a wonderful team of Duke doctors just right down the street. It is so reassuring to walk into that hospital and know that someone will know us, and will be understanding of our concerns and fears. I realize that any doctor can learn a patient's history, but to be there the night they code and to see them fight for their life in days following, I think, changes the way that patient is treated the next time they're seen. I will never fault anyone for triple-checking, and we are so blessed to be surrounded by a group of medical professionals who feel the exact same way.

"Who needs doctors when we have Mr. Monkey on call?!"

Thanks to those of you who visited, called, e-mailed, Twittered, sent Facebook messages and, most of all, prayed. Y'all are the best!

"BYE!"

11 Months Later

Official Duke fan

Looks like we need a bigger hat!

The closer Ethan gets to being a year old, the more speechless I feel. This truly is a ride that never stops, as made evident by our hospital stay this past weekend (more to come on that later). But whether we're in the midst of good, bad, or scary times I am thankful for how far my amazing little boy has come. There just aren't words for it.

At 11 months old, Ethan is:
-scooting across the floor on his bottom, reminding me of the need to start baby-proofing!
-spending more and more time on his tummy, especially when sleeping
-standing, unassisted, for a few seconds at a time
-going from lying down to sitting up
-clapping his hands
-waving "hi" and "bye"
-making lots of sounds (mama, dada, papa, baabaa, tata, sss, wawa, and various combinations of those!)
-eating Ritz crackers, and exploring various other foods
-drinking small amounts of water from an open cup
-extremely ticklish
-thinning out (he last weighed in at 25 pounds)
-looking more and more like his Daddy

I am in awe, and so in love.

Happy 11 months, Ethan. We love you.

A New Perspective

"I can't even really remember what it was like to hear a story about a mother with breast cancer or a baby born with congenital heart problems or any other medical burden, and to feel myself crack down the middle: half sympathetic, half grateful that my own family was safe. We have become that story, for everyone else."

-excerpt from My Sister's Keeper by Jodi Picoult

I read this book some time ago and this passage shook my soul. The truth behind that, as it related to my life just a year ago, is unreal. I knew many families, personally and through blogs, whose child was struggling with serious and, sometimes, life threatening health conditions. My heart ached for them. I cried as I read their stories, or as I sat with them while they shared their fears and frustrations. I prayed for miracles, and then for comfort when the miracle didn't play out the way we wanted. I offered whatever I had to help out a family in need. But, at the end of the day, I thanked God that it wasn't me. I thanked Him for the relatively good health of myself and those closest to me. I was cracked straight down the middle.

Much like many of you.

You have shed tears over Ethan's story and have asked God, "why?" You have provided physical, financial, and emotional support to my family on multiple occasions. You have rejoiced with us during the good times, and sat in silence with us during the bad. You've offered hugs, prayers, and words of encouragement, often at the times when we needed it most. But, like me, you think about your own family and you're thankful it's not you; you've experienced that cracked feeling. And that's OK.

Since Ethan's birth, a whole new world has opened up for us. Many of your stories have become the stories that my heart now breaks for. Many of your children join Ethan in my prayers, and many of those prayers have not been answered the way we would have liked. The difference between now and one year ago is that the crack is no longer there.

Other than being able to relate with some of your stories, the cracked feeling has been replaced with a feeling of isolation. Being the parent of a child with special needs can be a very lonely place. Sometimes it feels as though no one else could fully understand what you're going through. Those fears and frustrations that I mentioned earlier are so real and, for the most part, present in our everyday life.

The fact that we're smack-dab in the middle of cold and flu season doesn't help, either. Everything is a decision right now. If we need groceries, we decide who goes to the store and who stays home with Ethan. If there's a large get-together with lots of kids, the same applies. We alternate weeks in order to attend our church since the nursery is a no-go right now. We've become so disconnected with some of our closest friends. Living in community with people is an incredible idea, until the time comes that you can't participate in that community.

Then what?

I'm still trying to figure that out. Most days, I soak in every moment I have with Ethan. Everyday of my life, I am thankful for his. I tend the cherish the small things, and I try to not become easily frustrated. Those are the good days. The other times, the times when I realize I've not had one conversation that didn't involve work or family, the times when I've gone 3 weeks without worshiping with my church family, those are hard.

I've been encouraged by some "seasoned" heart mamas, whether they know it or not. To see pictures of their children visiting The White House, or pouring nasty medicine down the drain, gives me hope.

This is but a season of our life. It will not define who we are as a family, and I pray we won't hold Ethan back any more than what is necessary. I can only imagine that we will come out of this a little bit tougher, a little bit stronger, and a little more prepared for these feelings the next time they hit.

It's true that being a "heart family" is a gut-wrenching, challenging experience. But, it is also one of the most rewarding things I've ever done.

That is what I'll choose to focus on while my family becomes that story.

331 Days

That, my friends, is how long Ethan made it without a single ear infection! It's pretty impressive, actually, considering I already had a slew of them by the time I was his age. I felt a stab of guilt once the pediatrician confirmed that Ethan's defective eustachian tubes (well, tube...the right one, to be exact) was to blame for his discomfort over the weekend.

"If only we had brought him in on Friday..." "We haven't even given him that much Tylenol for pain..." "My poor baby..."

Jeramie snapped me out of it, and reminded me that we're still good parents. I smiled, gathered our things, and decided to put Ethan's long sleeve shirt on him once we got to the lobby. "We are good parents", I proudly thought, as we walked past the receptionist, ready to tackle this unwanted "first".

I sat Ethan on my lap and played with him a minute before going through the routine. Splinted arm first, then head, then right arm... voila!

Or not.

"Dang, it's on backwards!", I fussed. Not feeling like going through the whole process again, I decided to leave it just the way it was. Backwards looking, and all.

Ethan Kriss-Krossed his way through Target, without a single shopper being wise to our error, and definitely not questioning our parenting abilities.

It may sound small, but letting go of the little things (like fixing a backwards shirt) can be a very good thing. And, as I was reminded today, it doesn't make me any less of a parent. If anything, I think we're better of because of it.

Now, if only I can start spotting those ear infection warning signs a little earlier...