Monday, February 29, 2016

Day 29 - Gabriel

It was exactly four years ago today that we boarded a plane and headed across the world to meet a little boy who would change our world. A little boy who would soon be our son…
Rewind and I clearly remember the day we sat and filled out the agency checklist for which special needs we might be open to when considering a child to add to our family. We checked mostly what we felt were minor medical needs, as well as minor to moderate congenital heart defects. I will be honest, that one scared me the most. I can remember praying for the child God would lead us to and thinking to myself “any of those needs would be fine Lord but maybe not a child with a heart defect, it scares me…”
One night we received the call with a referral for an 18 month old little boy with a congenital heart defect. Our agency sent the file and even though we were told not to fall in love with a face, how could we not. His eyes looked so sad, so longing, so scared.

He was born with Tetralogy of Fallot with an ASD, VSD, and pulmonary stenosis. And he had already had surgery to repair his ASD and VSD in China. He seemed to be growing and developing well. We researched his condition and felt a great peace about the future. The fear that once lingered was gone. We knew that he would need additional procedures and possible surgery but we were ready and hopeful. We knew even though he had been born with a broken heart, what he really needed was a family.

We were so excited when the day finally came, and on February 29, 2012, we boarded a plane. Our time in China felt surreal and exhausting. At 23 months our son, Gabe, was the size of a one year old and still took mostly bottles, unable to chew food well. He barely could walk, had no real language skills, and was much like an infant. But he grew and developed fast once we came home.

Shortly after arriving back home we saw the cardiologist for the first time. The first echo brought news that they could not see his pulmonary artery at all. They were concerned the stenosis was so severe that it was too small to see and ordered additional testing. A CT scan showed the pulmonary artery was only 2mm where the stenosis was located and they mentioned possible open heart surgery. They were not sure if the team would be able to balloon it open in the cath lab. We waited to hear back from the cardiologist and prayed for good news. After a few days, we heard that the cardiologist wanted to proceed with a heart cath.

The day of Gabe’s procedure was an emotional one. It doesn’t matter how routine the procedure is for the physician, it is so scary to hand your child off and see the medical team walk away through the doors with your baby. But his procedure went beautifully! They were able to open up the stenosis to 10mm and were so pleased with the results. We stayed overnight in the hospital and went home the next afternoon. Our little man…he didn’t miss a beat.

We were told Gabe will need repeat heart caths, to open up his stent more, in the future as he grows. They think every 3-5 years he will have to go back. We are now 3 ½ years past the first one and are hopeful to get at least 5 or more years between procedures. He has graduated to annual follow ups with the cardiologist for now, takes no medication, and has no restrictions. Fast forward and Gabe has more energy than most and never stops going. He loves gymnastics, playing at the park, bible class, and playing board games. He plays hard and he loves fiercely.

On March 6, 2016 we will celebrate our fourth “Forever Family Day”. When I think of how fearful we were in the beginning, I realize how our true problem was a lack of faith. Faith that God would walk with us through any obstacles. Faith that we would be good enough parents. Faith that God’s plan was greater than our own. Don’t get me wrong, congenital heart defects still scare me. I know the possibilities that exist. Our son will have more procedures, and likely another open heart surgery to replace one of his valves. And that scares me. It scares me because God has filled my heart with so much love for our son, that to even think about him hurting, makes me hurt. I also realize that had we not taken this leap of faith in our lives, we would have missed out on the very best part of life, our Gabe. He is such a treasure and wow…God’s plan was so much better than mine!

“For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.”

 Jeremiah 29:11

Sunday, February 28, 2016

Day 28 - Darren Xiangzi

To me, Darren has a “jumble” of heart defects, but thanks to his medical-minded mama, we know that he has L-TGA, ASD, VSD, PDA, Pulmonary Atresia, and Dextrocardia. Repairs were the Senning and Rastelli and later a stent placed in his left pulmonary artery. Besides the stent, synthetic additions to his heart include multiple baffles and a conduit. The baffles are permanent, but he’ll need one more open heart surgery to replace the conduit with an adult-size version in several years and also has examinations every six months that mainly serve as ways for his parents to convert some innocuous word or phrase from his doctors into something we can worry about until the next appointment.

In between time, there are absolutely no indications that Darren’s heart limits him in any way whatsoever. When he joined us at nearly four-years-old, he was blue, could not walk up or down stairs, and even eating led to heavy breathing. Now he’s our unstoppable bionic man, wrestling and rolling and sprinting around, twirling his arms like propellers to take flight, or buzz-saws to destroy. His personality is a force of nature. His curiosity is all consuming. At the hospital, it’s as if he’s saying “I’ll ask the questions around here”, peppering the doctors and medical staff in ways that prove that these are not just one-way examinations. They ask him his age, he answers, then asks them their age. They weigh him, he complies, then asks them how much they weigh. He reduces world-class medical professionals with extraordinary accomplishments to speechlessness, and somehow does so disarmingly and delightfully.

With Darren, you know exactly where you stand in his mind at any given moment. He’ll complain to his mom about his dad by referring to him as “that guy,” unhappily furrowing his brow. He calls his big brother a “bully” and wishes a bad day upon him. But he’s just as quick with a compliment as he is with a critique, which makes his kind words all the sweeter. He shares “I love yous” out of the blue. “Mom, you’re pretty,” he’ll say with sincerity.

He’s a younger brother to six and big brother to one, yet king of the family. His giggles can melt the world.

We are blessed to call him our son,

Saturday, February 27, 2016

Day 27 - Bea & Beck

I can still remember our adoption agency telling us we didn’t qualify for the China program. After months of committing to pray for the entire world as a family and feeling the call to adopt, the Lord had directed us to China. 

Hadn't He? 

Little did we know then, that closed door would be the open door to our Congolese children. As always, God had a plan. But, even as we were finalizing our Congo adoptions, we still felt a little one calling out, 

“Fight for me.” 

I was sitting in a Congolese hotel alone, dealing with the Congolese government, and navigating my new world with an infant and a 2 year old I had just met when my wife called asking me to pray about China. 

So I did. 

And we fought for him. After many “no’s” and many tears we still felt the Lord saying, “Fight for them.” 


"Ok, Lord. We are yours." What started out as a journey to bring one Chinese little boy with a minor, corrected heart condition into our home, turned into a battle to bring two children with serious and uncorrected heart conditions into our family. 

In November 2014, two years after praying for China while in Congo, I found myself traveling with my son and daughter to China to turn stranger names and faces on computer screens into my children, my responsibility. 

As a father, my heart was drawn to our children not because of their adorable photos, but because of their vulnerability, because of their need for a father. In Psalm 68:5 God says He will be a father to the fatherless and He chooses to do that through us. He has chosen to work through me in the lives of my children and out of love for Him and them I choose to say, 

"Ok, Lord. I am yours. Use me." 

Fast forward to March of 2015. As we prepared for Bea's first open heart surgery, we knew that God had brought this little girl into our life for a reason. We weren't anxious. We weren't afraid. We knew with confidence that He had brought us to this place. We knew that she was His and His will would be done. We had nothing to fear, even though we were well aware of the severity of what she was about to endure. 

After hours of surgery, I waited alone in the waiting room while my wife stayed home with the other children. 

And the Lord was with me. 

Finally, I was told that everything went well. Success. We were also told that I would get to see Bea in about 20 minutes. After an hour went by with no word, we began to be slightly concerned. After 2 hours, we were wondering if such delays were normal or had something unexpected gone wrong? 

As I found out what really happened in the surgery room that day, I realized that there are many others fighting for my little girl. The friends and family praying and providing logistical support, the surgeon and nurses that performed CPR and brought her back to life when her heart stopped were also fighting for Bea as she went into full cardiac arrest post-surgery. 

And the Lord was with Bea. 

“The LORD will fight for you; you need only to be still." Exodus 14:14 

I thank God as her heavenly Father for saving my little girl that day and for giving me, her earthly father, the privilege to spend more time with her, to guide her, love her, hold her hand for as long as He allows. 

As I prepare to walk the road of open heart surgery again in the coming months, this time with Beck, I am not anxious. I am not afraid. I will fight for my son to live, knowing with confidence that the Lord has brought us to this place. He does all things with purpose and His will is perfect. 

How could I have known a year and a half ago when I boarded a plane to bring a little child left in the lobby of a hospital in the middle-of-nowhere, China into my heart and home that I would now be boarding a plane again with him to have one of the leading heart surgeons in the world operate on his broken heart? What a reminder of how great our God is! 

Both Bea and Beck's stories remain unfinished. Both have life saving surgeries yet to come. And both have hearts who ultimately need Jesus. As their daddy, I want to love and protect them. As their father, I want to direct their hearts and souls to their Father God, their Maker. He loves them far more than I ever could and perfectly He loves them. Although we pray their broken hearts will be fixed and they will live long lives here on earth, there is no greater prayer of mine than that their hearts, broken or corrected, will love the Lord their God and that He will save them for all eternity. 

On both accounts, I will fight for them. 

Friday, February 26, 2016

Day 26 - Evie Joy


Our sweet girl has a thing for holidays.

For the last few months of 2014, my husband and I talked and prayed about the right time to begin the adoption process for Baby #4.  We included our kids in this discussion, and they were not slow to get on board.  (Li'l Miss had been asking for a sister pretty much since we got off the plane from China in 2012.  Li'l Man kept announcing that he wanted five boys and five girls, while proudly holding up both hands full of fingers. Li'l Dude...well...we were counting on him getting used to the idea.)  As a family, we decided to move forward at the beginning of 2015.
Then we got a little Christmas surprise.

On Christmas Eve, our agency posted the files of several newly assigned waiting children.  When we woke up on Christmas morning, even more little ones had been listed.  One of those sweeties seemed like a good fit for our family.  (Actually, most of them did, but someone had already informed me that I was cut off at one this time around.) We asked to see this little one's file and received it right away. Here’s the little face that arrived in our inbox.

We read through this sweet girl’s file and tried to take it all in. Her diagnosis was unrepaired Tetralogy of Fallot (TOF). We knew a little bit about heart defects from our adoption in 2012, but we were not experts by any means. Even though the thought of a heart baby was not something we had seriously considered, we had room in our hearts and our home for another little one; and it was very evident that this little one needed to come home.

A few days after we requested to review the file, we got a short video to accompany it. In the video, the sweet girl was screaming. You could see how blue she was, and, if you looked closely, you could also see the clubbing of her fingers. The first time I watched it, I just knew this baby was ours.  I remember I was walking into Target and clicked on the link right away.  It seems strange to see a little one screaming her head off and think, She's my baby; but that's exactly what I did.

Fast forward a few months to another holiday. Although we started our adoption from scratch at the beginning of January, we were able to expedite our process because our girl (who we had named Evie Joy) needed to get home. So, amazingly, we found ourselves standing in the Shaanxi County Civil Affairs Office on the afternoon of Mothers’ Day, waiting to be handed the best Mothers’ Day gift ever.

There she was: our sweaty, blue, beautiful baby girl. While Evie came from an orphanage that seemed to be incredibly nurturing, she was not receiving any cardiac care in China: no surgeries, no medications, nothing. It was scary to see her blue lips and fingertips and to watch her struggle to breathe – even when she was just sitting at the breakfast table.

The baby girl we met on Mothers’ Day was sick and quiet and scared to death. She didn’t make a sound for five days. We didn’t hear her cry or laugh or fuss. She could walk, but she was super wobbly and tired very quickly.

Our cardiologist had scheduled Evie for an appointment the morning after we arrived home from China. Through the tests Evie had that day and in the coming weeks, we learned that her diagnosis of TOF was correct. She also had stenosis of the left pulmonary artery (which is present in about 40% of people with TOF), a PDA that needed to be closed, and a PFO. 

Evie was scheduled for surgery about five weeks after we arrived home. In the weeks before her surgery, we worked hard on bonding. We spent lots of time cocooning as a family. We even squeezed in time for family pictures.

On June 30, 2015 Evie had her open heart surgery. The surgeon was able to repair everything he had hoped. He patched her VSD (big hole in the bottom of her heart) and closed her PDA (extra duct coming off of her aorta). The opening to her left pulmonary artery was very small, so he used a patch to widen that. (The patch is actually a piece of the sac that surrounds her heart. How amazing is that?) He also opened up her pulmonary valve and placed an artificial flap. Her valve was very, very tiny - like the diameter of half of the top of your pinky.

After surgery, Bean's body was really struggling. When we finally got to see her in the CVICU (Cardiovascular Intensive Care Unit), the first thing the doctor said to us was, "She is very sick". Her lungs were filled with a lot of blood and fluid, and her oxygen saturation levels were low. The doctors had sedated and paralyzed her with medication, and a ventilator was breathing for her.

I don't even have words to explain how hard it is to kiss your child goodbye in the morning when she looks like this...

…and see her next looking like this.

Most of Evie’s struggles were due to the fact that her surgery was a year and a half overdue. Her body had two years to learn to function with a broken heart; after surgery it had to learn all over again.

And our girl likes to make holidays memorable.

Evie made progress after the surgery and was extubated just two days later. Unfortunately, her progress stopped and she started getting sicker. She was restricted to a clear liquid diet, but she still threw up everything she ate. Her body started retaining fluid, and she get more and more lethargic.

Then came the 4th of July. That day she had an EEG, a head CT, breathing treatments, and an Echo. As the day wore on, she kept sliding further and further into lethargy and oxygen desaturation. Her body got puffier and puffier and her liver started struggling. Finally, she had to be sedated and paralyzed and put back on the vent.

It was honestly the most terrifying night of my life. When they had finished the intubation, I stood at the foot of her bed and just cried. Even though she was sedated, Evie had tears running down her cheeks. Blood and fluid bubbled out of her little nose. I wanted more than anything to pick my girl up and run and run and run until we miraculously ended up back at normal.

Thankfully July doesn’t have any more holidays. ;)

Evie stayed on the vent for three more days and then was extubated again. This time you could just tell she felt better. After eleven days in the CVICU, we moved to the step-down unit. Three days later, we said goodbye to the hospital.

Today our little girl is pink and spunky and full of mischief. She giggles and chases her siblings and is mostly fearless. For now, she’s off all meds and has no restrictions. Her pulmonary valve couldn’t be saved, but her synthetic valve is doing a great job. One day, she’ll have open heart surgery again to replace that valve, but this Valentine’s Day she was just a two year old with a little line of bravery down the center of her chest.

Thursday, February 25, 2016

Day 25 - Evan and Ava

We saw his face in April of last year and knew right away that he was our son. But his untreated heart and lungs were so very sick and we didn't have long to get to him. Would we make it in time? It seemed impossible. Paperwork and money, process and procedure. But four months later, mountains were moved and he was on his way home. Only God. Evan loved being home. He was so happy to finally have his very own family. We were so thankful to finally have him. What we always feared but didn't know for certain then was that had he not come home when he did, he wouldn't have come home at all. A few days later, sudden fainting brought us to the hospital. In addition to his congenital heart defects, Evan came home with severe, untreated Pulmonary Hypertension. In Evan's case, his Pulmonary Hypertension was caused by a lack of surgical treatment for his heart. When the pressure in his lungs would get too high, oxygen to his brain would be cut off and he would faint. At any moment, he could die. For five years, he had been fighting for every breath. What could have been prevented had he received cardiac intervention as an infant will be lifelong and life limiting.

One month, two hospitals in two states, and a life-saving open heart surgery later... he was back home and we were full of hope that he could really start living and making memories with a healthier heart and lungs.

But just a few days later, off to the hospital we went again. He was initially admitted for unexplained fevers, then developed severe double pneumonia. His heart and lungs deteriorated rapidly. He was in severe heart failure. His Pulmonary Hypertension was so severe, in fact, that his lungs were literally hemorrhaging. We were given the option to do a very high risk open heart surgery that might extend his life, or to do nothing at all. Without surgery, he would die. While we were so scared that we could lose him, we chose hope. He wasn't supposed to survive. He fought hard for 88 long days, mostly all in the CICU. And he won. He was loved and prayed for by so many people. Our prayers were answered and Evan was finally able to come home shortly before Christmas.

Evan's story was once one of loneliness and hopelessness. But it is now full of so much love, faith, family, commitment, and community. Hope did that. Some wonder why we would ever choose this life of hospitals, surgeries, medications, and uncertainty. But we would do it all over again, because our yes changed our son's life and it has changed ours.

Evan's fight taught us that saying yes to hope is always worth it. While his condition will be a lifelong fight, he will be going to battle with a family by his side. And that's why we are running to Ava. Yes was easy. A thousand times, yes. Why now? Hope is why. No matter where you are and how hopeless your situation may seem, there is truly always hope.

Ava has very complex heart disease, multiple gastrointestinal issues, and very unique anatomy. Further treatment may not be possible. But it doesn't really matter. She is precious and already so loved and prayed for. She has a family ready to help her fight, something that she has done on her own for far too long. God is bigger than any prognosis or diagnosis. He can move mountains and answer prayers. We believe that He has and that He will again. He is a God of hope. And hope changes everything.

So we're doing it all over again. Because her life matters right now. Because there is no room for fear in love. Because it doesn't have to make sense. Because God's plans are always better and they never fit into neat little convenient boxes. Because stepping out in faith is always worth it. Because every heart matters and there is no heart too broken. Because yes can change a life. Because it changed ours and it changed his and we know that it will change hers. We will run to her. Because she's worth fighting for and she deserves to have her very own family fighting alongside of her. Just like Evan.

Because love recognizes no barriers. It jumps hurdles, leaps fences, and penetrates walls to arrive at its destination full of hope. ~ Maya

Hope for Evan & Ava

Wednesday, February 24, 2016

Day 24 - Rosie, Carlie, Maisey, Nathaniel

I had the opportunity to share on 28 Days of Hearts last year. Read 2015

What a year it has been. So much has happened in the past year, so many miracles. It was a year filled with love…and joy…and hope.

Today marks two years since we met Rosie. I’m filled with joy, because that day was a completely amazing day, but there are also tears over the fact that she’s not here to celebrate with us. So much has changed in just two short years. Our family has grown by five, making us a family of eleven.  In May, it’ll have been two years since she gained her angel wings and half of my heart resides in Heaven with her. I’m so thankful that I have pictures like this one…

Celebrating her first birthday in Heaven with a monkey cake

Carlie had her first open heart surgery on April 3rd. Instead of staying at our local hospital, we made the decision to travel to Boston. To be honest, I was quite nervous when Carlie left for surgery. The last time I saw Rosie alert and happy was right before her surgery. Memories of those days spent with Rosie before surgery flooded my mind the weeks before Carlie’s surgery. During her surgery, the surgeon ended up ditching all the potential plans and instead performed a modified Glenn to her right pulmonary artery and a shunt to her left pulmonary artery. Her body handled it miraculously well, and she came home a short seven days later (without oxygen!).

Watching her transformation has been breathtaking. When we met Carlie in China, she was barely surviving. Now, she is thriving. In August, we celebrated her ninth birthday. And while she is still super small, she definitely has enough sass for a nine year old!

In December 2015, Carlie once again traveled to Boston with my mom. Three months earlier, the doctors had told us she was in the beginning stages of heart failure. She underwent her second surgery on December 14 and ended up receiving a full Fontan circulation. Although she still has some issues with her only valve (common AV valve) being leaky, the surgery went really well. We were amazed once again.  God clearly has mighty plans for this girl!

“She was awake enough to play with her doll while still on the ventilator!

Maisey recently had her one year heart checkup. The doctor says she looks great and he’ll see her in two years! Her ASD has closed itself and her VSD is so small it just needs to be watched.  Maisey is our little ball of energy and keeps us all laughing. While she still doesn’t talk (believe me, she makes PLENTY of noise), she communicates everything through ASL (American Sign Language). After getting her hearing checked three times, getting ear tubes, and finding a new doctor, she will be starting aural rehab/listening therapy next month. She has mild hearing loss, so hearing aids may be in her future. In October, we celebrated Maisey’s seventh birthday.

I stand amazed at how much has happened in the past two years. I vividly remember the days I spent with Rosie here on this earth. Those were beautiful days. I can still recall her cute voice calling my name at the top of her lungs. I watch videos of her doing ‘nastics and giggling over everything. And I listen every morning to her wind chimes that hang on our porch… Reminding me just how precious life is.   

And while (temporarily) losing her was hard, she was completely worth it. Rosie was my sister inside and out. Genetics didn’t mean anything. We loved each other with our whole hearts. And while that made her leaving 10x harder, it made her being here 100x more awesome. She rocked my world in the very best way possible and showed me how to have genuine and unspeakable joy. I love her so much.

Right now my mom and older sister are in China. Three little boys have just joined our family! One of them, Nathaniel, was Carlie’s crib mate from their orphanage (Carlie, Rosie, Maisey, and Nathaniel are all from the same orphanage). We met Nate in December 2014, and knew that we wanted to get him help. Little did we know that we were his family! Nate has a large ASD, which was surgically repaired in China, and untreated hydrocephalus. His heart will be fully assessed upon arriving home.

My two other brothers who recently joined our family are, Adam, who is eight years old, and Collin, who is six months old. Adam has arthrogryposis and loves to be silly. Collin has biliary atresia and is in liver failure. He is currently hospitalized in Guangzhou. They are hoping to fly home this Saturday.

Thank you for taking the time to read the story that God is writing. I am amazed and in awe at how God works. Sometimes it doesn’t make sense, and sometimes it’s a bit messy, but it all works out in the most beautiful of ways.