Monday, August 23, 2010

Every Heart Has a Story

Every Heart Has a Story

The saying is true; every heart does indeed have a story, and this is Ethan's. In order for you to get a really good idea of his story, I feel it's important to start at the very beginning and set the tone for the biggest surprise we've ever had...

(You can also hear us tell our story, and how it has impacted our relationship with God, here. Just click on "download".)


My husband, Jeramie, and I learned that I was pregnant one hot, July morning in 2008 after two months of “entry-level” infertility treatments. It was an exciting time for our family, and we spent the first few weeks basking in the joy that new life provides. However, not long after that, I began to experience some complications with the pregnancy. My OB gave us a 50/50 chance of having a viable pregnancy and set up an ultrasound appointment to confirm or deny the life I had growing inside of me. I vividly remember laying on the table for the ultrasound, wondering if we would see the beat of our baby’s heart. Needless to say, many tears were shed that day as we saw a strong flicker on the screen in front of us!

I was diagnosed with having a subchorionic hematoma and was told it would resolve itself. The doctor was right, and the hematoma was practically gone by my 20-week ultrasound – at which point our baby passed the anatomy scan with flying colors!

During that ultrasound, however, it was discovered that the baby and I shared an umbilical cord that only had two vessels instead of three.  Due to that discovery, I was brought back for another ultrasound on December 23rd, 2008.

"No worries," the doctor said,"we just need to monitor the baby's growth, but there shouldn't be any major complications".

The baby measured just fine, but some other concerns about his/her development arose. My OB sent me for a Level 2 ultrasound to see if we could get any more information.  Unfortunately, the Level 2 didn't do much in the way of clarification. I was about seven months along at that point, and things were getting pretty squished in there! Even still, the doctor was determined to get some more information and brought us back for a second Level 2 scan a few weeks later.

At that following appointment, the doctor was fairly certain that our baby had a couple of non-critical developmental issues.

"But, his heart is strong and everything else looks great!" he said, trying to reassure us.

A few weeks later, on March 7th 2009, my water broke and our precious baby boy was born the following morning, March 8th. His birth confirmed that he had two birth defects which would require surgical intervention - one urological in nature, and the other orthopedic.

I remember crying over his bassinet in the newborn nursery, praying that he would be OK. I had no idea what else was coming our way.

Family and friends came to visit, and we spent about eight wonderful hours in the room with our son, whom we named Ethan. He didn’t nurse well and didn’t cry a lot – two major red flags that weren’t apparent to us first-time parents. It wasn't until our nurse was bringing Ethan back to our room after some routine testing that she noticed “he just didn’t look right”. She immediately took him back to the newborn nursery where she hooked him up to a pulse oximeter and discovered that his oxygen saturation level was in the mid-60s.

We had no idea what was going on at this point; we assumed Ethan was still in the nursery and that everything was fine. We called our nurse to find out what was taking so long, though, and she told us that someone would be in shortly.

I don't even remember who came into our room to break the news, but the words "We have reason to believe there is something wrong with your baby's heart" will never be forgotten. We had friends and family in the room with us, and friends on their way to visit, when we were told about Ethan's heart. I instantly shut down and couldn't process what we were being told.

Through tears, I wondered, "How could there be something wrong with his heart? How did the doctors not see this before now?!"

I was angry and very, very scared. We eventually talked with a cardiologist who told us that Ethan would need surgery in the next 24-48 hours. He explained Ethan's defects to us and said that these particular defects are very hard to see on ultrasound. In short, Ethan was diagnosed with Pulmonary Atresia with VSD. This basically means that there was no way for blood to get from his heart to his lungs (pulmonary atresia), and there was a large opening in the wall that should have separated his ventricles (ventricular septal defect - VSD).

Ethan was rushed by LifeFlight to Duke University Medical Center within hours after his diagnosis. My OB agreed to discharge me the following day so that I could join him there.

He had his first surgery, the Rastelli, at three days old on March 11th, 2009. It was a long, grueling operation and his surgeon looked absolutely exhausted when he came out to talk with us. The repair was a success, but Ethan was experiencing complete heart block. The surgeon hoped this would resolve itself within a few days, but that was not the case. Six days later, on March 17th, Ethan went back into the OR to have a permanent pacemaker implanted.

We spent the next month at Duke, helping Ethan recover from those two surgeries, working our way through NEC watch (10 days of NO food!), and trying to teach Ethan how to eat, once he was allowed. Duke became our home and we met so many people who will forever hold a special place in our hearts.

On April 22nd, 2009, three days away from our discharge date, Ethan went into full cardiac and pulmonary arrest. It took a team of about thirty doctors and nurses, and eleven minutes of CPR to bring him back to us. His prognosis was not good and there was lots of talk of possible brain damage and diminished heart function.

I thought I was angry when he was initially diagnosed, but those emotions had nothing on the way I felt the night my baby's heart stopped beating. I couldn't (still don't, and probably never will) understand why this happened, and I felt sick to my stomach every time I thought about losing my baby. It made me so angry to be back in the ICU on the day we were supposed to be taking our son home for the first time.

In the days that followed his arrest, the doctors determined that Ethan had been severely refluxing his food. It had been coming up his esophagus and going down his windpipe and into his lungs; the official diagnosis was "micro-aspirations". This caused his lungs to fill with fluid, which put more pressure on his heart, which eventually just gave up. Because of this diagnosis, Ethan was sent back to the operating room on May 7th, 2009 to have the Nissen procedure and to place a G-tube for feeding purposes.

His recovery from that surgery was quick, and he we soon realized that Ethan was doing just fine from a brain function standpoint. His heart was also making a nice recovery, and we were discharged one week later on May 14th, 2009.

Bringing him home was full of such joy and emotion! We were so scared to take care of this fragile little baby on our own, but we were elated to finally be home as a family of three. We spent the summer of 2009 loving on him and enjoying all of those newborn "firsts", even if he was three months old!

We were taking Ethan to see the cardiologist every two weeks at that point and, later in the summer, it was decided that he needed a second heart surgery. Ethan had outgrown the conduit that was inserted during his first surgery and would need to have that replaced.

On September 14th, 2009, exactly four months after we brought our baby home, we took him back to Duke and handed him over to the surgeon yet again. This surgery seemed like a cakewalk compared to his first, but we knew it was still a serious situation. Thankfully, Ethan recovered very well and we were able to come back home just six days later!

Since September 2009, Ethan has been very stable. His cardiologist is happy with seeing him every four months now, and we're working with a feeding therapist to increase his food and liquid intake by mouth.

As of December 20th, 2010, Ethan no longer uses a G-tube! A stent was successfully placed in his conduit during a cath procedure in May 2011, and cardiologist appointments are every six months as of July 2011.  He had another successful cath in August 2012 and is thriving in every sense of the word!

Despite his rough start, and having more than a dozen surgeries and procedures, we now have a happy, healthy, energetic boy on our hands! We know there are more surgeries looming in his future, but we enjoy him for the moment. We celebrate every milestone and encourage him to do whatever his body will allow. We are so proud of what he is capable of doing, and we foster the strong-will that is needed to face the things he will eventually come up against.

Every heart has a story. Ethan's story is that of strength and resilience; it's about rising above the brokenness and turning something so tragic into something so incredibly beautiful. I've heard it said that a heart defect doesn't just break one heart, it breaks three, and that is so true.

However, Ethan's broken heart has transformed mine as well. His story has allowed me to experience forgiveness, acceptance, faith, and empathy in such a genuine, strong way. I pray the story of Ethan's heart will continue to offer hope and encouragement to those who may be walking down this same path. I pray he will accept his story as he gets older and will find acceptance from others as well.  Most of all, I pray He'll give God glory for every ounce of the special, incredible person he is.

To be continued...

To read more stories like Ethan's, check out The Faces of CHD on Pinterest!

Wednesday, August 18, 2010

Feelin' funky...

...and not in the hip, cool way, either. I've been in a bit of a funk over the past week or so and can't seem to shake it. I think the fact that Ethan and I haven't gotten out of the house much doesn't help, but there's more to it than that.

I know quite a few people who are dealing with some pretty serious, scary stuff in their lives right now and that constantly eats away at me. Our house never sold, so it's officially off the market. We're in the process of refinancing, and all of the stress that comes along with the mounds of paperwork and endless questions is taking its toll on my mental health. I'm still more than a little bummed that my sister is 3,000 miles away, so it's probably safe to say I'm kind of emotionally unstable as well.

Overall, I'd say that I'm doing OK, just not great. I do think it's safe to say that I am still very pleased that I won't be joining my former co-workers this week as they head back to school. It is bittersweet, knowing that someone else will be responsible for the education of my first babies, but I know they are in good hands. Me staying home with Ethan has been a huge leap of faith and it's currently in God's hands to keep us in the air. I absolutely adore the time we get to spend together and I continue to be amazed at his progress! I am thankful that I've been given this opportunity and my prayer is that Jeramie and I will make wise choices for our family as we move forward, especially with our finances.

But, enough about me...

Ethan never ceases to amaze me. He is my bright spot in an otherwise blah and dull day. Jeramie and I are in the midst of learning how to parent a full-fledged toddler and I welcome the challenge. I've been looking back at lots of old pictures lately and I was reminded that, at one point, there was a very strong possibility that we wouldn't have a toddler to parent. As frustrated as I get when he throws food in the floor, or smacks my hand away, or yells "No NO!", I try to remind myself that being his Mama is what I've always wanted. The good, the bad, and the ugly ... this is my job and I really don't think I've ever had a better boss!

Also, Ethan's well on his way to being tube-free for the first time in his life! At this point, we're only using his G-tube for liquids, but I think we'll have him drinking enough to stay hydrated pretty soon. The current thought is to keep the tube around through the flu season just in case he were to become dehydrated (gotta love that instant access!), then hopefully remove it in the spring. WOOO HOOO!!

If you haven't already signed up to walk with us in the 2010 Heart Walk, and you want to, go ahead and do that today! I'm just $40 away from meeting my personal goal and "Team Ethan" has a little more than $1,200 to raise in our to reach our goal of $2,000. The American Heart Association is counting on us!

That's all for now ... Ethan's waking up and that means it's time for a snack! Thanks for checking in; my apologies for the randomness of it all!

Thursday, August 12, 2010

More prayers, please...

It feels as if it is a crazy time in world of heart babies right now.

I signed into my Google Reader this morning to check-in on Jay, who is at CHOP having open-heart surgery. I was delighted to read the first update, saying that the surgery was over and went well for the most part. I was absolutely heartbroken to read the 2nd update, telling us that Jay had gone into cardiac arrest last night and was put on ECMO as a result.

Would you please say some mighty prayers for this scared family? Stop by their blog and leave a note of love and encouragement. Coming from someone who has experienced that type of hell on Earth, I know it would mean a lot to them to know that massive amounts of people are lifting up their sweet family.

Thanks, y'all.

Sunday, August 8, 2010

Heartfelt Prayers

I've recently been introduced, via blogs, to two families who could really use our prayers right now.

Jill is the mama of soon-to-be-born baby Joshua. Joshua has been diagnosed with Hypoplastic Left Heart Syndrome (HLHS) and Jill is scheduled to deliver her sweet baby boy next week. He will undergo his first heart surgery just a few days after his birth. Please stop by Jill's blog to let her and her husband know that you will be lifting up them and their precious little boy during this time of high anxiety and fear!

Amy will be delivering baby Ella tomorrow morning (Monday the 9th), via c-section, at 9:00 a.m. Ella has also been diagnosed with HLHS, but has some other complicating factors within the structure of her heart. She will, more than likely, go straight to the OR for a procedure right after birth, then have her first open heart surgery a few days later. I'm sure Amy and her husband would love to hear any words of encouragement, or just that you'll be praying for them as they enter into the events of tomorrow.

Heart moms and dads are instantly bonded and the stories of these innocent little babies stings me in a deep, personal way. I will be praying for both of these families throughout the following days, and I ask that you do the same.

Saturday, August 7, 2010

Checking in...

Ethan came home earlier today from an overnight stay with his PawPaw & Grandma A. (Jeramie's parents). This gave Jeramie and I the opportunity to talk to a couple of mortgage loan officers about refinancing our home (more on that later...), to experience the First Friday festivities in downtown Raleigh, to sleep in until 10:20 this morning (!!!!), and to clean our downstairs from top to bottom.

Ethan had his fair share of fun, too, don't you worry! He rode tons of rides at the Burlington City Park, walked until this little heart was content, munched on some McDonald's nuggets & a hot fudge sundae, and rode a real, live pony at a street festival this morning!

We are so thankful that all 3 of us were able to get a break from the "norm"; thank you PawPaw & Grandma A!!

Just for laughs, here's a pretty dang funny video of Ethan getting a kick out of PawPaw's water hose antics ... enjoy!

Tuesday, August 3, 2010

Sister, Sister

This past weekend Jeramie, Ethan, and I drove down to my parents' house to spend a few days there. It would be my sister's last weekend in town, and our last chance to see her before she boarded a west-bound plane to Portland, Oregon.

I've been in denial since she told me a few months ago that she would be moving. I only mentioned it to a few people, and always pushed the thought of her not being 2 hours away to the very back of my mind.

However, come Sunday, I couldn't deny it anymore. I sobbed after she cut Ethan's hair. Partly because it was his first haircut and he looks nothing like a baby anymore, but mostly because it was such a special thing for her to be able to do before she left. I teared up when I watched her snuggle with Ethan on the couch while watching cartoons, and I cried for about 45 minutes in the car after we drove away ...and that was just on Sunday. Let's not talk about my emotional breakdown today, knowing that she's no longer in North Carolina.

The bond between sisters is a very special and unique thing. Growing up, we did everything we could to get away from each other. There were cat fights, and yelling, and pulling of hair, and gnashing of teeth. But, now that we have matured, we are best friends. She is one of the most giving, tender-hearted, free-spirited people I know. She loves Ethan so genuinely and deeply, and would do anything in the world for him, me, or Jeramie. The same is true of our Mama and Daddy. I've never met anyone else like her.

Many people have asked "Why?!" when they hear that Jessi is moving to Oregon and, to that, I am learning to reply, "Why not?". Why does a single, 24-year old, with no major responsibilities, need to explain a decision that would give her an opportunity to experience a different part of the country? As much as I don't like it, I am so very proud of her for doing this. For moving out of our parents' home and into a house with friends 3,000 miles away. For finding a job before she ever boarded the plane. For being brave, and willing, enough to have her life turned upside-down. For leaving the comfort of Southeastern North Carolina, the only place she's ever called home, to fly across the country and start all over again. That takes the kind of courage I only wish I had, and it makes me one proud big sister.

I'm going to miss her like crazy, and it makes me sad that Ethan won't get to spend as much time with her, but this isn't about me or Ethan, really. The best thing I can do now is support her in every way possible, especially through prayer. I'll be following along in her journey, and you can too! She started a blog to document this new life adventure, and I think she is quite the writer! See for yourself.

I love you, Jessi, and I am so very proud of you! I can't wait to hear the stories you'll have to tell...

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