Thursday, February 28, 2013

28 Days of Hearts 2013

Day 28 - Benjamin Dohner

At one point in my life I never would have dreamed I would be sitting on the other side of the world waiting for my son to be brought through these big doors. But here we were. We were anxious to meet our new son and mentally struggling to feel connected to the son at home who was at the same moment undergoing emergency surgery... on the other side of the world...without us.

Every family has a different story when adopting a child. Every child has a different story when their family finds them.

In May of 2010 my husband and I were exploring the possibility of adopting a little boy. The idea was not completely new, but this little boy had a face. We were not able to proceed at that time because it would mean several trips to the country. This would prove to be too costly because of the expense of travel and the time off from work unpaid. We have been parents since 1991 when our daughter Emily was born.  Becoming a parent for the first time wasn't our goal but adding to our family was important to us. We had 3 awesome kids and felt adding a child would just make each of them better people. Each child was all for it. Our youngest son kept asking when we were going to adopt.

I continued to look at waiting child pictures on . After a year of torturing myself by looking at all those waiting faces Keith and I had a "reckoning" talk. We were either going to need to move forward and begin an adoption or I was going to have to deny the tugging on my heart. Together we decided it was not possible to ignore the waiting boys and we committed to adding a child to our family.

Each step for us had some difficult speed bumps that could have caused us to walk away from our eventual son. In late August we were given a surprise MRI on a child we had committed to. The information in the report was completely contradictory to what we had been told in the file. The toughest decision we ever made was to let that boy go. After more than a week of debating and turmoil and prayer we contacted our agency to let that little him go. The same day I received the joyous news that my sister was pregnant after years of trying for a second child, with triplets!

We soon submitted our letter to adopt our son Benjamin. We were somewhat afraid of heart issues because, "Hey, you only have one heart." In addition, We had a church family who lost their son named Ben to hypoplastic left heart syndrome. It seemed a fitting tribute to name our heart baby "Benjamin".

Our Ben was born in the right part of China to have Transposition of the Great Arteries. He was able to have an excellent repair at the best hospital for CHD repair in all of China. His parents tried to care for him for a few weeks until he became too ill and medical help was needed. We were told his repair, an ASO, was excellent. He should do very well. Most parents evaluating a child with CHD are warned about unknowns of behavior and learning difficulties. 

We received our invitation to travel a few days before February 28, 2012. On this day a year ago my sister gave birth to 2 healthy girls and 1 healthy boy! What beautiful babies! Within a month my parents were to be blessed with 4 new grandchildren!

4 days before we were to leave the states our oldest son was taken ill and admitted to the hospital with a spontaneous pneumothorax. WHAT? The doctors insisted it was a minor illness, they would insert a chest tube and get the air out of his chest cavity and he would be home recovering before we left the country. I sat by his bed and watched the bubbler continue to drain air and fluid from his chest. For 4 days I watched that chest tube drain. Finally on the morning we were to fly out we got a call from the hospital. They wanted to talk to us. Everything started to move in slow motion. Our oldest son was being transferred to a regional medical center and we were leaving the country.

It's amazing when I think about our story that so much of it was minutely crafted by God to care for our family. Our son turned 18 just a week before he got sick and was able to make his own decisions for his health care. Our daughter was a huge hero in being able to care for him while we were gone along with his grandparents. Our church supported them with prayer and meals until we could get home.

 As we were welcoming a new son to our arms, 

our oldest son was having thoracic surgery to inflate his lung and stitch it to his chest wall. 

Benjamin's adjustment has been so smooth. He adores his siblings and grandparents nearly as much as his mommy and daddy. At this time he is considered healthy, with no restrictions. He needs to have a sedated echo to confirm what our cardiologist saw on the kicking and screaming echo from last June.

A year ago he could not go up or down a curb. His sad period only lasted for a few moments while we were in China. 

He did not have an inkling what a family was. He couldn't speak any Chinese or English. He didn't know he was going to give it all up. But he hasn't slowed down from those first few moments we first embraced.

As I became a new parent at the age of 47 I think about Ben's Chinese birth family who chose life for him when they could not give it to him themselves.  I wonder if they know he lived? I wonder if they know how wonderful he is? I wonder if they know how healthy he is? I wonder if they know how loved he is?

Remember the first lines of this story? In May of 2010 we looked at the face of a little boy. He was not to be our son. But, on May 1, 2012 our family celebrated Ben's 2nd birthday. Two years had passed since that first little face nudged our hearts to the fact our family was not complete! We have never doubted that Ben was meant to be in our family. Is there a little boy or girl in need of a family in your future? Were they born today? Have they been waiting a long time for you to say "Yes".  Do not deny your child a future. Your story will be unique. You will be blessed beyond your wildest imagination.

Wednesday, February 27, 2013

Day 27 - Lia Feith Jones

Orphan…older child …severe congenital heart disease.  All of these were words I heard on the other end of the phone almost four years ago when our adoption agency called with a referral.  As I clicked to open the email they were sending with more information and a photo, I wondered how we could even think about adopting a child with these labels.  Once I opened that email with her sad little eyes staring into my face I heard these words echo in my ears….”My child, I will not leave you as orphans, I will come to you(John 14:18).” At that moment, I knew Jiang Li Fei was our daughter and we were the parents God had planned for her.

When God began speaking to our hearts about adoption we knew we would follow the special needs pathway, but imagined the need would be minor, one  that was easily repairable.  However, when He calls and we say, “Wherever You lead, I’ll go,” we may be called to go down a path we never planned.  We have learned that His ways are far greater than ours and we wouldn’t change a thing to go down an easier path.  The path He has led us down has been full of bumps, bruises and more love than we could have ever hoped.

When a woman complains of a long nine-month pregnancy, she has no idea how it feels to look at her daughter’s picture for a full year, knowing that baby girl is growing up without the love of a mother to hold her and in need of medical care her parents long to provide.  From May 2009 until May 2010 we clung to hope and every little update we could gather from such wonderful organizations as Ladybugs n Love.

During the wait to hold our daughter in our arms we contacted doctors, decorated her room, sent care packages and prayed for her health. It was during this wait that God began truly growing our faith for the days ahead.  Days that He knew we would need a stronger faith to get us through some very scary moments.

Finally, on May 31, 2010 we prepared for the moment we would meet our daughter.  As we walked up the steps into the civil affairs office in China I saw her standing there with such a sad little face.  I bent down to look into her eyes, and almost felt as though I was looking into the eyes of Jesus and time stood still as she became an orphan no more.  It was a moment I will never forget; a moment when my own fear of wondering if I could love a 4 yr old child who spoke another language vanished and the language of love was all we needed.

The days that followed were filled with tears, solitude, laughs and a new love that filled a spot in our hearts we had never known was empty until that moment.

After arriving home we quickly began seeing doctors and making plans for her second open heart surgery, the Fontan.  Thankfully her birth family, who could not provide her medical needs, cared enough to abandon her in a hospital.  It was a few months later, at 18 months old, she underwent her first open heart surgery, called the Glenn procedure for Tricuspid Atresia in China.  She was now beyond ready for the Fontan, the third step in this process for her heart defect.  During the two months between arriving home and her surgery we needed to fatten her up and she wasn’t too impressed with her new choices of food, so as any good parents would do, we fed her lots of ice cream!  After all, isn’t that the best medicine?

The long hours and days following her surgery caused our heart to grow more in love with our newest daughter.  We thank God for knowing what we needed so much better than we could have ever dreamed.

Now, two years later, we are raising a 7 year old little girl with a single ventricle heart, who tries her best to keep up with every other first grader.  She lives life to the fullest each day and shares the love she has stored in her heart with everyone she meets.

She inspires us daily.

She prays for mommies and daddies for other little boys and girls who need heart surgery.

And she treasures her gift of family,  just as we treasure the gift God has given us.

Tuesday, February 26, 2013

Day 26 - Kaylin Mei Lian & Kaleb Alan Liang

Our journey to adoption was as much a leading to enlarge our family as it was to enlarge our faith…..a God-given journey to our 2 youngest children that would change our lives forever.  It was YEARS in the making….. the early 90’s….yes early 1990s!  My pastor husband, Mark, and I had been blessed with 3 biological children, but I would often call an adoption agency after my heart was once again touched by stories on Focus on the Family about children who needed families or families who had adopted.  Each time I would receive the packet of information and look it over, I would be stopped by that inevitable same problem.  It takes money and LOTS of it…and that’s where it would all end.   Or so I thought.

Fast forward to 2004.  Mark had been called years before to step out of pastoral ministry into Crisis Pregnancy Center ministry with many different centers across the country.  We were watching our God perform jaw-dropping miracles in the Crisis Pregnancy Centers in which Mark was the Executive Director because HE created life and wanted to show HIS glory in providing all that was needed for these girls/women and their babies.  And then HE did it again!!  All that year, He plowed up that same soil of my heart which had always wanted to be obedient to the call, but didn’t know how.  I was so incredibly broken time and time again in 2004 listening to adoption testimonies, seeking His heart and finally seeing the many, many children who were orphaned in the Tsunami of December, 2004.  While watching the coverage together, I sat and prayed, “Lord, I know I may not be able to help those children right now, but I will be obedient and follow You to the child you have for us.”  As Mark and I prayed and talked about adopting a child, we were in full agreement that we would begin this journey of faith and signed our first paperwork on January 16, 2005.  It would begin a journey of listening ever so closely to the Lord’s voice in even deeper ways than I had ever experienced.

We knew we were headed to China to adopt a baby girl and daughter.  God had already confirmed that to us.  As most families at that time, however, we were encouraged to adopt a healthy baby girl, as young as possible.  To be honest, the list of “special needs” was a bit overwhelming.  How would we know what we could handle anyway?  Our dossier was completed, sent to China and accepted in July 2005.  Little did we know, our expected wait of 5-6 mos for our daughter’s referral would begin to extend out as China slowed the process down.  But, God had a plan.  You see it was during this slowdown that I began to read other families’ adoption stories of waiting children….children with “special needs”.  God began to speak into my spirit that our daughter was a “heart” baby and to look for her on our agency’s list.  The Lord was even so specific that I was impressed that we would have her referral before my birthday on April 20, 2006.  On April 3, 2006, our agency received their “waiting children” list for that month which included one sweet, baby girl from Jiangsu Province with a “heart defect” called Tetralogy of Fallot.  I knew immediately that she was our daughter!!  Knew it!  We had her file reviewed by two pediatric cardiologists who both said she was a good candidate for surgery and to bring her home.  Well…..9 other families also thought she was their daughter.  All 10 families were presented before the agency’s matching committee, and we were chosen as her family on April 17, 2006….just 3 days before my birthday!!  We named her Kaylin Mei Lian.

The Lord gave us such a peace about our sweet girl…so many unknowns…but that He was in control.  This time, the Lord gave Mark the impression that we would travel to bring her home in June 2006, but our agency said it would not be until July.  Once again, the Lord’s promptings and impressions were confirmation to our walk of faith as we left on June 13, 2006 to bring her home….EXACTLY 1 year to the day of when she was left to be found on June 13, 2005!  HE wanted us to know, without a shadow of a doubt, that she was our daughter!

God had already performed the miracle of providing all the financial needs for us to bring Kaylin home by this time, but little did we know that He had already performed another miracle.  We arrived at the Nanjing Civil Affairs office to receive her on “Gotcha Day” on June 19, 2006.

Our own hearts were beating out of our chest as we waited for her to be carried in the door by her nanny.  Here she was, our beautiful, 13 mos old, Kaylin.  She was oh so quiet, just watching and listening to the other families who were also receiving their crying children.  As they handed her to me, the orphanage director told us that Kaylin had already had her open heart surgery.

WHAT?  Did we understand that correctly through our guide who translated it?  She had her surgery?  It wasn’t in her file.  Our agency didn’t know it.  We didn’t know it.  Yes, Kaylin had already had her open heart surgery 6 MONTHS previously back in December 2005!!  WOW!!  God had truly surprised us again!!

It wasn’t until we were home and had her first cardiology visit and evaluation that we would understand what her open heart surgery had meant for Kaylin.  Because her orphanage director petitioned the Tomorrow’s Plan for Kaylin to have her open heart surgery, it meant she did not have to suffer the effects of her ongoing Tetralogy of Fallot spells of turning blue and purple from lack of oxygen as her nanny documented over and over again.  It meant that her fingers and toes were saved from the effects of clubbing.  It meant her lungs had been saved from damage, too.  The surgery, itself, was excellent as told to us by her cardiologist.

Along with the many positives of her surgery, unfortunately, were the negatives of it being done in China for our precious girl.  She had to be hospitalized for 6 weeks before they could perform her surgery.  We are assuming she was extremely critical and unstable.  She spent close to 2 months in the hospital in China….by herself….going through open heart surgery….by herself.  The emotional ramifications of enduring these months in the hospital by herself would show up at home in sensory issues.  Just as her physical heart was healed through surgery, she continues to heal emotionally as she is loved and learns to trust and understand she is now safe.

Her life-saving surgery also meant that she began to grow and grow.  And oh this girl has GROWN!

And grown!!

Kaylin has not been the “typical” heart baby from China.  At now 7-1/2 yrs old, she continues to be in the 90th percentile on the American charts for her height and 50th percentile in weight at almost 53 inches and 55 lbs.   She is expected to be 5’8” or taller.  I cannot tell you how excited she is that she will be taller than her momma who stands at only 5’3”!!!

I wish I could write that she is also the typical ToF kiddo when it comes to her next expected surgery.  All the documentation we read and all the cardiologists we talked to said that usually these kiddos need a valve replacement in their 20s to 40s.  However, as everything with Kaylin has been a surprise, it was a hard day emotionally when we heard that her heart is beginning to enlarge already as her pulmonary valve is no longer functioning properly due to the regurgitation, and it was much, much sooner than expected.

As we did when we were adopting her, we pray for God’s continued healing hand over her heart and life and put her in His hands as she has always been.  We don’t know from year to year what cardiology issues may arise for Kaylin, but we know the Lord has provided everything we needed to bring her home and will continue to provide everything needed for her future.   She loves school and to swim and has the sweetest personality along with a good dose of competitiveness which we are sure the Lord will use as she grows in Him.

Once we opened our own hearts to Kaylin and adoption for our family, they remained open to adopting another child.  We wrestled with whether to bring home another daughter and sister for Kaylin or a son and brother.  As we prayed earnestly in 2010, Kaylin told us, very adamantly I might add, that she wanted a “brother from China who looked like her!”  Well, ok then.  There was our answer!   Knowing that we would adopt from the “special needs” list again, I began to pray and fast and ask the Lord to show me what special need our child would have as there were so many children with an untold number of special needs.  How in the world would I know who was to be our son?

Because our God wants us to fully know His direction, He made it very clear one day as I was reading the book, “One Fish, Two Fish” by Dr. Seuss to Kaylin.

We turned to this page and the Lord clearly said to me, “Your child has a limb difference.”  WOW!  I told my husband and our older daughter and then remembered the smiley face of the sweetest looking little boy from Guangdong Province with a limb difference whose pictures I kept returning to over and over again.

Not only did he have a limb difference (missing thumb), he also had a repaired VSD (ventricular septal heart defect) which, in my mind, also made sense so that Kaylin would also have a sibling with the similar surgical line of healing from open heart surgery running down her chest.  As we would discover in review of his file, he was diagnosed with a syndrome called VACTERL as he had 3 of the 5 anomalies including a VSD, a missing thumb and a half-vertebrae.  In all honesty, the day before we said yes, we said no!  One of the medical reviews we had received sounded so scary that we thought his medical needs might just be more than we could handle.  But as we continued to pray over him, we could not say no.  He was our son whom we named Kaleb Alan Liang.

I named our journey to Kaleb exactly what it was - Faith Walkin’ to Kaleb as we had that financial mountain to climb once again to bring him home.  This time the Lord stretched our faith even further and showed His Glory even more as we needed the entire amount for Kaleb’s adoption.  In only 7 months, the Lord provided $31,000 through lots of prayer and fasting, fundraisers, our church family, other families who came alongside us as well as grant agencies, to supply all that was needed to bring Kaleb home.

Though Kaleb had spent almost 6 years in his orphanage, he came bounding to us in excitement and anticipation of his own momma and baba and family on April 10, 2010 and has never looked back.  His outgoing and exuberant personality has helped him adjust wonderfully to his new home and family.

Once we were home and settled, he, too, went to see his cardiologist for his open heart surgically repaired (in China) VSD.  He was given the A-OK and needs seen every 3-4 years for follow-up.  All of our concerns about his medical needs before his adoption soon dissipated as doctor after doctor, test after test showed how healthy and what non-issues they were.  God also reminded me of when He told me that this child would have a limb difference and the page in Dr. Seuss we were reading.  Even down to the 4 fingers on one hand, Kaleb was our son with 4 fingers on his hand with his missing thumb.  The Lord could not have been any more specific!!

Kaylin and Kaleb, as you can see from this picture, are this wonderful duo all wrapped up in FUN!!  They have their debates together as Kaleb is actually 2 weeks older (DOB 4/21/05) than Kaylin (5/5/05), but they are quite the pair!!

I can tell you, without hesitation, that it would have been so easy to continue to allow the fear of the financial needs, the medical needs, the unknown to have stopped us from following the Lord to either Kaylin or Kaleb.  But look at who we would have missed out on!!  Oh my goodness!!  Tears come to my eyes as I write this thinking of that possibility.  Instead, we stepped out into the unknown holding the Lord’s hand, watched Him provide and bring more joy into our family than we could have imagined.

About the time I write this and say our family is complete, the Lord may surprise us again and tell us not quite yet.  So instead, I will just share that our family will always be open to the direction of the Lord in expanding our family as He directs through the amazing miracle of adoption.

Monday, February 25, 2013

Day 25 - Tommy

September 13, 2010 He became my son!
Walking up that staircase, lots of other families, babies crying, hot, nervous, where is he!  A curtain stood in for a door on the side of the room. Walking over I craned my neck to see if I could catch a glimpse of my new son. Seated on a nanny’s lap was a concerned looking little guy, my son!!  The nanny handed him to me and with that transfer my heart was lost to him forever and always.  I am a heart mom and he is my son.

In China, we noticed that Tommy seemed to be bluish. We had heard about that happening to heart children, but had never seen it firsthand.  I was thankful I had made an appointment with cardiology before we had left on our adoption trip. I felt I was going to need the reassurance Tommy was working well right away.  We knew what his heart defects were after all we had paid to have his file reviewed. Our adoption trip went fairly smoothly, we had brought along all of our other children and that was a blessing. We had adopted from China before and knew what to expect.

At Tommy’s first cardiology visit at home, we found out his diagnosis was actually different than was originally thought.  Tommy has tricuspid atresia, pulmonary atresia, atrial septal defect, ventricle septal defect and mitral valve regurgitation.  He has a single ventricle heart.

He seemed to be doing pretty well, so we got to come back in a few months. During this time we had also taken him to our local international adoption doctor where he was diagnosed with rickets from malnutrition, which I thought was rather strange since his orphanage had the nutrition sponsored by Love Without Boundaries, a wonderful organization.  He seemed to be declining and not breathing as well, so he was scheduled for a heart catherization in December 2010.

The results of his heart catherization was unexpected, it showed Tommy had formed pulmonary arteriovenous malformations in his lungs, a rare side effect of having a bad heart. He would need his fontan operation sooner rather than later.  His case file was presented to the surgeons and he was declined for surgery as being too small.  We went home with instructions to pack pounds on him.

Since he seemed to be doing well and there was a lull in doctor’s appointments with his heart we decided to follow up on getting his rickets and nutrition resolved. Rickets would have been nice, Tommy does not have rickets, in addition to his heart problems he also had osteogenesis imperfecta commonly known as brittle bone disease. There are several type of brittle bone disease and he seems to have a mild form.  Tommy has pretty much all the side effects without lots of broken bones. Yes, it does make his heart issues more complex, for example his chest takes much longer to heal than if he didn’t have OI.

During this time, we noticed a rapid decline in both his energy level and his saturation level. According to the cardiologist Tommy declined in two months what they thought might take a year. He was presented again for surgery and again turned away as being too weak.  We and our cardiologist decided to seek out other opinions from top pediatric cardiologist hospitals around the United States.  We became Boston bound in June of 2011. By this time Tommy had been on continuous oxygen for months already.

Boston is an amazing hospital, but thousands of miles from where we live. Tommy started with a heart catherization a few days before his big surgery. In true Tommy fashion he had complications with the catherization and sprung an artery leak right in front of us. Never ever again do I ever want to see that.  Lots and lots of coils were placed in the cath lab. His chest x-ray looks like a maze of wires. Putting in words the feelings going into his fontan is hard.  We had been told he wouldn’t make it through the fontan and here we were carrying him into it.  Prayers, prayers and more prayers is how Tommy got through the fontan. Yes, there was complications, he coded, needed blood transfusions ect. but when all was said and done, he did amazing!! By the end of July we were home again.  Tommy was still on continuous oxygen.

At his checkup in October 2011, Tommy had again declined. The cardiologists were stumped. We were told to go on his wish trip in December, forget about the medical and have some fun as a family.  Tommy continued to decline. His lungs were a huge issue.  We kept needing to turn up his oxygen flow rate to keep his saturation levels in an acceptable range.

April 2012, Tommy had another heart catherization.  During this cath it was discovered the fenestration that was created during his fontan was the problem. His fenestration was permanently closed and Tommy was able to breathe on his own for the first time in over a year.  We have so much to praise the Lord for!!

Increased pulmonary hypertension is a side effect of a closed fenestration and Tommy is experiencing that. He is currently on medications to lower his blood pressure to help his lungs out and take the load off of his heart.  At his last checkup he was considered stable. For how long, we have no idea. We were just overjoyed that for this last appointment he was considered stable.

The above is my son’s medical in a very small nutshell.  Tommy is so much more than his medical.  He is cute and adorable. He is the reason there are toys all over the house. He is the big boy showing us his big muscles. He is the person I ask if I need help with the Ipad. He is my dancing in the kitchen partner.  He has the widest smile. He is an amazing people person. He sings Jesus Loves Me.  He is proud of sleeping in his big boy bed.  He thinks he can beat me at Connect four and he really does beat me at Candy Land.  To us, Tommy is perfect in every way and each moment with him is a blessing.