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!


Stefenie said...

Hey Joye!! Ethan has an amazing story! What a precious miracle he is!! Thanks for participating in my blog event! Hope you make some wonderful connections there too!

JDavis said...

aaahhh...I know I was there since day one but I'm still boo-hooing like a little girl over here! Good tears though :) I am so proud of how far Ethan has made it, and even more, you two! Your strength and courage is what he reads and copies. If we could all be as strong the world would be such a better place. I honestly never knew what reslient meant until the day Ethan was born. That he is. I love him with all my heart and is so amazed by how much he's touched me and changed my life. Thank you for giving me such an amazing nephew.

Amanda said...

I still get teary thinking and reflecting on those pictures. We talked about faith this weekend and Ethan instantly came to mind. His story brought so many people to faith. We prayed and cried for a miracle and that beautiful smile is exactly what we asked for! Praise God for Ethan's story and for parents like you and Jeramie.

Anonymous said...

Hi Joye. I read and listened to Ethan's story. I am truly touched by it and your honesty. I thank God for all He has done and will do for your family. God is so good! Thanks for sharing! I'll continue to pray for your little guy.
Tori Shaw

kirsten michelle said...

Hi Joye,
Thanks for stopping by and saying hi!! My heart clenched and my breath stopped as I read Ethan's story and tried to imagine dealing with everything you were dealing wtih in the moment. I'm so thankful that you are this precious boy's parents and that you have the outlook you do. What a gift!!

Thanks for your encouragement and I look forward to connecting more.

(Ewan's mama) ;o)

Hope's Blog said...

I am so inspired by your story. Ethan is an amazing little man and he has great parents to see him through everything. I can't begin to imagine all that you have been through...and you have learned and grown so much through it all.

mossfamily said...

Joye- I just cried my way through that story. Ethan is a fighter & such a joyful child. And his story has forever touched many! What a precious gift life is & those of us who have never had to endure watching our child literally fight for their life, sometimes take that for granted. I hope i never do again! You are an amazing mom & God has blessed you as the mommy of precious Ethan!

Anonymous said...

Hi Joye,
I have been reading your blog for several weeks but thought I would finally come out of cyber-hiding and introduce myself. I live in Cary, NC and am the mom of three. My son, Jack (who will be 4 in December) was born with Tetralogy of Fallot w/ Pulmonary Atresia. He has had two open heart surgeries and six caths. Currently, he has outgrown his conduit and surgery number three is looming. He is also have lot's of problems with his PA's in terms of narrowing, etc. Jack's primary PC and surgeon, cath doc. are all at Children's in DC. However, we do see Dr. Rhodes at Duke occasionally so he is up to date in case of emergency. We go to DC only because that is where we lived when Jack had his first two surgeries and we are just not ready to change surgeons.
I just wanted to introduce myself and let you know that we've been praying for Ethan. He's a cutie! I don't have a blog but have been keeping a carepage since his CHD was found while I was pregnant with him. If you are interested, Jack's carepage is JacksHeartUpdate.
Thank you for sharing Ethan's story. These children are just amazing!

Tania said...

I began reading Ethan's story since the first day I heard about him in our grade level meeting. I remember reading your blog, crying and praying for you and Ethan. I had not prayed in a long long time. I had not had a conversation with God the way I did when I thought I needed to ask for his help. I continue to read, laugh and cry about the things you share about Ethan. Your strength and love continues to amaze me daily. Ethan will forever have a follower that will pray and love him from 'far away'. I admire you as a mother more than I can admire anyone I know who was a 'perfect' life.
Tania K

Jen said...

Wow, I didn't realize everything you guys had been through, even though I've been reading your blog for a while! Ethan's powerful story brought tears to my eyes, as did your faith filled outlook. I cried most of the way through your story (!) but when you said the part about the heart defect not just breaking one heart, but just hit home. Truer words were never spoken. But at the same time, like you said, how we have the ability to find the positives and turn these stories into beautiful stories of hope and inspiration.

Thank you for sharing Ethan's story. What a precious little miracle he is! So fragile at the beginning, and look at him now! Wow! Only God could do something like that! :)

mommy to Andrew, TOF

Anonymous said...

Heart touching story about an amazing little boy who is so very special in so many ways.

I love him dearly.

Grandma A.

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