Tuesday, February 28, 2017

Day 28 - Little Hearts Medical

2016 brought great growth to Little Hearts Medical, and with great gratitude and appreciation I thank you, our donors and supporters, for helping us to surpass our goals for the year!

Thank you to all who spearheaded fundraisers, donated time and medical supplies, and spread the word about the work of LHM! It has been immensely gratifying to see LHM's reach extent to more and more children who desperately need to be provided with hope and care, and I am so honored to work alongside of those who share our vision. Directing this organization is an absolute joy!

Little Hearts Medical is an all-volunteer, 501(c)(3) organization.

During 2016, we accomplished the following:

-157 file reviews of children born with congenital heart disease were completed for orphanages, adoption agencies, and prospective adoptive families. Our team of Pediatric Cardiologists and Surgeons provide these assessments free of charge. Post-assessment consultation with the reviewing physicians is part of this service, as is assistance with medical expedites as warranted.

-16 cardiac assessments and/or echocardiograms provided to orphans and children living with their biological families during our medical trip to Beijing in June, along with surgical consulting at BaYi Children's Hospital (our partner hospital). Two of our pediatric cardiologists/interventionists, Dr. Laurie Armsby and Dr. Jay Fricker, volunteered their services during the trip, and paid for all travel expenses except for guide/translation fees which were paid by LHM. Administrators (Executive Assistant Eric Olson and Special Projects coordinator Ann Bartlinski), also paid all costs associated with the trip minus guide/translation fees which were paid by LHM.

-7 open heart surgeries were provided in August to children at our partner hospital in Beijing by our Surgical Director, Dr. Stephen Langley, who volunteered his services and paid all of his travel expenses. Our mission is to "teach a man to fish" and as such, the surgeries trained the BaYi surgeons in procedures new to them. Dr. Langley trained the China team in arterial switches, complex re-repairs, and various univentricular operations.

-We provided two more pairs of surgical loupes to the Jr. Cardiothoracic surgeons of BaYi Children's Hospital. We have been delighted to receive regular updates from the Cardiothoracic Surgical team at BaYi, letting us know of the advanced surgical techniques they are able to now perform thanks to the loupes. 

In January, the team was able to re-implant a child’s heart after it had been removed from his chest in order to facilitate the removal of a large tumor.

-The balances were paid on the hospital bills of two children in China whose families were not able to afford the entire costs of their open heart surgeries and related hospital expenses. Assisting in family preservation is vitally important to us.

-We provided two sets of critical care transport equipment to Little Flowers Dew Drops medical foster home in Beijing, along with several thousand dollars for their surgical fund.

-Scanlon International, a foremost provider of surgical equipment, donated tens of thousands in pediatric cardiac surgery instruments for us to donate to our partner hospital in Beijing.

-We worked with multiple adoption agencies on ongoing medical consulting for several waiting children with complex congential heart disease.

-With the help of Love Without Boundaries and Video Medical Missions/World Care Initiative, we assisted in arranging a cardiac catheterization for a critically ill CHD child.

We look forward to a fruitful 2017! Thank you for helping us to care for some of China's most vulnerable children, and to continue our mission of expanding pediatric cardiac care in China.

With heartfelt thanks,

Executive Director, Little Hearts Medical

Monday, February 27, 2017

Day 27 - Cameron

We started our adoption journey in May, 2016. We had 3 biological children and they were all under the age of 3 so we did the most logical thing, we checked off minor needs and under the age of two. We intended on taking this VERY slowly, thinking this might even be a two year process. We knew that would be helpful given the young ages of our children. But we knew God called us to start right then, so we did. We completed our homestudy and dossier in about 3 months. 

In August we were less than a week away from sending our dossier to China when I came across his face in an advocacy group. He was going to be 3 years old soon, had a complex, un-repaired congenital heart disease, and had been waiting for a year for someone to say "yes". His listed needs were VSD, Pulmonay Atresia (in his case a completely absent Pulmonary Artery), and Major Aorta Pulmonary Collateral Arteries (MAPCA's). Some may classify this as a rare form of Tetrology of Fallot, or TOF with PA and MAPCAS. While others will call it VSD, PA, MAPCA’s. He seemed to be doing well according to his file, despite his desperate need for corrective surgery. He had some clubbing and cyanosis. 

MAPCA’s are very rare. They develop when the fetal heart fails to develop a pulmonary artery. An absent pulmonary artery is not comparable with life. The baby’s body must create it’s own unique blood flow to the lungs, called MAPCA’s. If these MAPCA’s aren’t providing adequate blood flow, the baby may not survive. The MAPCA’s have to be surgically removed from where they originated and inserted into the heart via a conduit. The procedure is called Unifocalization. This procedure can be performed on children with MAPCA’s if the arteries are big enough. If the procedure is successful, the child will require lifelong cardiac catheterizations for ballooning or stenting of the arteries to keep them open. In addition, the child will need open heart surgeries to replace the conduit has he outgrows them. 

My husband is a Physician Assistant and still would have been hesitant to take on any heart need. But it just so happened, we believe by the hand of God, that he saw two adult CHD patients in his office in the weeks before checking off our medical needs checklist. These adult patients lived normal, healthy lives. THAT gave him the confidence to consider heart needs.

I am a cardiac sonographer (currently a stay-at-home mom) so heart needs in general I am comfortable with. But his file came with one report that stated "inoperable, palliative care only" and we received two others from surgeons in the USA that felt confident in a full repair, although it would likely be a staged procedure, meaning more than one major open heart surgery in the first year. There was the risk that the they would be wrong and he may not be able to be repaired. There was the risk of multiple, complex, open-heart surgeries. Therefore, no matter the comfort level, there were big risks and lifelong management. 

We knew his needs looked scary to most and too risky. He was a boy, over the age of two and had a complex heart need. We new his chances of being adopted were low. We knew he had already been waiting for a year. The question became, “Why not us?” And the reality was that this child needed surgery as soon as possible to live. After a lot of discussion and prayer we decided that the risks were something we were willing to accept. 

My husband had one final concern before we could say yes. Saying yes would be saying yes to a medically expedited adoption, which would mean that all of the funds for the adoption would be due soon, rather than being spread out. And his surgery would have to be right away which would mean paying out out of pocket maximum for our medical insurance at the same time as finalizing our adoption. And because this would fall at the end of the year, we would need to prepare to pay our out of pocket max again come January assuming he would need the second open heart surgery then. So we needed to have all of the adoption funds plus our out of pocket maximum amounts times two, all within 4-6 months. I've been a stay at home mom for 4 years so we are on one income with soon to be 4 children. That is a lot of money that we didn't have. The day came that I knew we had to make a final decision. That day we received a very generous and God led donation of $10,000. My husband left work to come home to sign our papers with me that said, YES, we want to adopt our son!

Two months after saying, “Yes”, on October 17th, 2106, we were in China holding our son. We named him Cameron. He was an orphan no more. He became a son, brother, grandson, nephew, and a cousin. (If you consider a medically expedited adoption, ours was 5 months, start to finish.) His fatigue and shortness of breath were obvious, along with some clubbing of his fingers and some cyanosis.

We went straight to the hospital from the airport once we were back in the USA. But because Cameron was more stable than his doctors anticipated and just as complex, our team decided to push his surgery back a couple months. That would give them time to coordinate his surgery with two more surgeons and some other talented staff. This gave us priceless bonding time at home before surgery. 

Photo Credit: Cheryl Thompson Photography

Cameron has a joyful glow and a contagious smile. He loves to laugh and make others laugh. He jumped into our family so seamlessly. 

On January 5th, 2017 Cameron had major open heart surgery that he waited all his life for. We were not given a timeframe for the procedure, only that he was their only case that day and to expect it to be a long day. They took him from me to the OR at 7:45am. We settled in to the waiting room and waited. 

Each update seemed to come quickly. A nurse came out on the hour, every hour. She had such great news each time we began to rejoice and get excited for the next update! Before we knew it our surgeons came out to speak with us. Cameron's procedure went exactly as planned and the correction was COMPLETE! Not partially complete, no staging needed, he was FULLY REPAIRED. However, after they took him off bypass the new pulmonary arteries (MAPCAS) went into spasms and clamped down. Cameron wasn't getting enough blood to his lungs. He had to be put on ecmo and moved to the cath lab to attempt stenting the MAPCAS to open them back up. I knew this was serious. I knew it was life-threatening. I knew getting stents through those freshly sutures in delicate MAPCAS would be risky and slow and tedious. But what I also knew, by God's amazing peace and comfort and plan for Cameron, is that he would be just fine. I knew it. I saw the worried look on our surgeons face and I told him, I said "He is going to be okay." I knew God was with us, I knew He was in the operating room. I just knew. We waited again. It was after/hours by that point so the updates were not as timely because the only staff left were the ones with hands on my son. The first update the nurse said that they did the cath, did not place stents, and were cleaning out and stopping bleeding. I wasn't worried about the bleeding, but asked why the stents weren't placed. She said my doctor would come talk to me and that she has to go to help with the bleeding. After about 30 minutes of no one coming to follow up I did start to worry. I started to worry for the first time in 10 hours. So I played my praise music and I praised and prayed. I knew if they couldn't place the stents that he wouldn't come off ecmo. I wondered what they were doing and what the plan was. Finally after a very long 30 minutes I received word that they stopped the bleeding and were going to start stenting. What a relief!!! Before I knew it they stented two of the three arteries and were trying to get him off ecmo. In no time at all I received word that he was off ecmo and doing great! What a miracle! At close to 13 hours after they started he was moved to the ICU. Our surgeons said the repair was perfect and he would need a surgery MANY years from now to replace his conduit and valve (it will be when he outgrows it, because his heart will grow but those implanted parts will not). I want to add a HUGE thank you to our surgical team. 

We were able to see him right after he arrived in the unit. He looked amazing!! He looked just like our Cameron. There was no swelling. His color was normal. It was incredible. Over the next week he progressed amazingly quickly. Tubes and lines came out. He was extubated! We praised the Lord through every step and obstacle overcome. 

Then came pneumonia. In one day he his chest tubes went back in, his arterial line went back in, his foley went back in, and he was re-intubated. We expected major complications right after surgery and a long recovery because of Cameron having such a major repair at age 3. It's hard on these children's lungs to function with so much more blood flow than they are use to. In addition, their other organs are getting more blood flow as well. It's a wonderful thing, but takes a toll on the body to adjust to such big changes. We even rented an apartment for 4 weeks for Cameron’s surgery in anticipation of complications. Cameron unexpectedly did so well immediately post op that this took us by surprise. But our faith never wavered. We still knew that God was with us. His peace was unmistakable. We knew that he had planned our journey, inch by inch. It was all in His hands and it was our job to wait and keep our eyes on Him. “And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus.” Philippians 4:7

His heart was still fully repaired and functioning beautifully. Cardiac-wise, he was perfect. Perfect for the first time in his life. For the first time in his life, his heart was working in a way that would give him a full lifespan! That is a miracle that we held on to and focused on and thanked God for. 

Days went by without real progress in vent-weaning. The pneumonia was better but Cameron’s breathing pattern wasn’t. On January 21st the intensivist said that Cameron had either had a stroke or that he had bilateral diaphragm paralyzation. Those were the only two explanations for his odd breathing pattern and why they couldn’t wean him off the vent. We prayed over our son. And we kept out eyes to the heavens. “Be still and know that I am God.” Psalms 46:10

The next day, Sunday, he went to the cath lab to have his diaphragms checked. An hour later they brought him back and said that they could NOT diagnose diaphragm paralyzation. Sunday night, for the first time, I noticed a change in Cameron. He started playing with a small motorcycle toy and was using both hands. The next morning, Monday, he was suddenly, without explanation, with no changes in his medical treatment, breathing in a normal breathing pattern. When the doctors had done everything they could do, when they ran out of options, when they couldn’t, HE did. God healed our son. By the way, they went forward with the MRI on that Monday as well. It showed NO evidence of a stroke that would have had any effect on his breathing pattern. Doctors and nurses repeatedly said in reference to his new normal breathing pattern, “We have no explanation for this”. Staff that heard the news came by to see for themselves. They would stand in his doorway and watch him in amazement. And we would say “It’s a miracle. God is good.” 

“Do not throw away your confidence, which as great reward. For you have need of endurance, so that when you have done the will of God you may receive what is promised.” Hebrews 10:35-36

On the 24th of January he was extubated. Staff members continued to visit daily to see our miracle. On that note, I want to thank our entire medical team for loving my son and making us feel so cared for. On March 2nd we were discharged. We were discharged with a fully repaired heart and beautifully functioning lungs. We left on no supplemental oxygen. Cameron’s oxygen saturations are around 92-95 completely on his own. We had to stay in town for another week in case we needed our medical team and for a follow-up with cardiology. We spent a total of 5 weeks away from home. Before this I would have thought you were crazy if you suggested I would spend 5 weeks away from my other 3 children. I’m a stay-at-home mom that doesn’t even utilize baby-sitter’s for errands. When you hear “God equips the called”, friends, I’m here to tell you it is TRUE. If you think you can’t, you probably can’t on your own. But when God calls you to do something you can throw all of those “can’t’s” you hold on to out of the window because when you step out on faith to your calling, GOD just stepped on the scene. Don’t tell me what He can’t do. God can do anything but fail. 

For the future, Cameron will need a cardiac cath in about 3 months to stent his third MAPCA (only two of them were stented on the day of surgery). After that we simply monitor him with cardiac follow ups, echo’s, cath’s, and lung scans. We anticipate another open-heart surgery years from now when he outgrows the conduit. That recovery should be easier than this one.

The bottom line is, adopting a child with complex CHD is worth it and I would (and probably will) do it again. Cameron deserved this. He has a great purpose and has already changed our lives for the better. My faith was tested. It was strengthened. I’ve never felt closer to God and more confident in His love and plans for us. We stepped out on faith and had a front row seat to miracles. We are thankful. We are blessed. And we are so excited to see what God has in store for Cameron’s future. We are honored to be the ones cheering him on. 

Sunday, February 26, 2017

Day 26 - Magnus

On September 3rd 2015, my eyes fixated on a picture of one of the most beautiful babies I had ever seen. I gasped out loud as I knew in that instant I was looking at my child. My husband, Mike, and I had already decided to wait to be matched by our adoption agency but on that special day, it all changed. And thank goodness it did! Dressed in a mismatched outfit with a pink blanket in the background, I assumed this gorgeous child was a girl but as I looked down at the advocacy name of “Forrest”, I knew in fact that he was a boy. Oh heavens, a boy! Surely that would shake things up in our home as we had three daughters with lots of bows and tutus to match! I read the short description about his age, personality, and special need, and there it was in black and white…complex congenital heart defects. The exact words God had placed on our hearts earlier that year.

You see, when we started the adoption process months beforehand, we thought we wanted to grow our family with a child “as young as possible with a minor special need”. That’s what we told our social worker at our first home study visit. As the days and weeks passed, we realized God was calling us to a child with CHD. Starting with a soft whisper in our ears, we heard Him speaking straight to our hearts that our child would have a little, broken heart. Our family, friends, and even our social worker were all concerned as we changed our medical needs checklist to include minor and moderate cardiac needs. But with an assuring nod to each other, we knew this was the path the Lord intended for us to follow. We continued the paper chasing portion of the process while keeping busy with our sweet daughters, Anya who was 8 years old, and Eliza and Juliette who were 5 years old. We worked as fast we could on paperwork, home visits, and appointments, always keeping in mind that there was a little hand waiting to be held half-way around the world.  

By the beginning of September, our dossier was almost complete and we were waiting on immigration approval when I “accidentally” but thankfully came across that picture which would change our lives forever. I called Mike immediately and asked if I could request “Forrest’s” file as well as another heart warrior’s whom were both listed with WACAP. Shockingly, he said yes and we received them the next day. We excitedly and impatiently waited to look through them until after the girls had fallen asleep that night. I knew in my heart that “Forrest” was our son so we decided to open his file first and never ended up looking at the other boy’s file (who later would be adopted by a wonderful family!).

Without knowing any cardiac medical terminology, we researched each heart defect – transposition of the great arteries, double outlet right ventricle, atrial septal defect, ventricular septal defect, and severe pulmonary stenosis. With tears streaming down our faces, we realized how serious his cardiac needs were and that he needed immediate life-saving heart surgery. We cried throughout the evening as we discussed what this would mean for him and for our family. Without knowing if his heart could be fully repaired, we talked through having to settle for palliative surgeries and possibly burying a son. What would that do to our daughters? To us? The questions continued but each was met with “he is worth it”. He is worth every ounce of fight, pain, and sorrow. Come what may, he is WORTH it! And in that moment, our minds were made up no matter what anyone would tell us. We had found our son! Since we were required to have at least one physician review the file, we sent it to cardiologists at both Boston Children’s Hospital and St. Louis Children’s Hospital. We were told he may be a candidate for a full bi-ventricular repair but we wouldn’t know with certainty until he was home and could undergo testing. We were given so much HOPE for this precious boy!

With an extra pep in our steps, hearts bursting, and prides swelling, we signed our letter of intent to adopt our first son. We switched agencies and expedited the process to bring him home. We kept him a secret for an entire month (aka eternity!), not sharing our exciting news with anyone but our family photographer. We told our daughters we were going to have an adoption photo shoot with some cute props but little did they know we were going to give them the surprise of a lifetime! One even better than the time we told them we were going to Disney World that same day. It was a memorable afternoon filled with jaw drops, giggles, smiles as wide as their faces, and tears from Mike and me. From that day forward, the girls told anyone willing to listen about their brother – from friends at school to the cashiers at Target. They beamed with pride and showed off his picture in each of their lockets.

After a long search for the perfect name, we decided that he was our Magnus. I had always liked this name and when we discovered it means “strong warrior”, we knew we had found the perfect name for our perfect boy. We busied ourselves preparing his room, filling his closet with adorable outfits and shoes, and adding some cars, blocks, and balls to the toy chests. We created a blog for our family and friends to follow our travels in China (www.threesistersandamister.blogspot.com) and set out on the journey of a lifetime to bring Magnus home in January 2016. After several incredible days in Beijing, we arrived in his city of Nanchang and prepared to meet the newest member of our family the following day. Hours before I looked into his eyes for the first time, I wrote him a letter and posted it to our blog so family and friends could get a glimpse into my heart.

I have so much to show you and so much to teach you. But first and foremost, I will teach you LOVE. Because above all, that is my most important job in this world. To teach you that you are so very loved and adored. That no matter what, I will be your protector and not allow any more unnecessary pain to descend on you. You have already had more than most people do in their lives and yours has been but two years. My son (oh how good that feels to say!), I will move mountains for you. None will be too great. We have a difficult and winding road ahead but with your hand in mine, we will travel it together. Because in a couple of hours, you will be alone no more. Never again. I promise to love you. Protect you. Hug you. Kiss you. Make you laugh. Dry your tears. Teach you. Encourage you. Make you feel special. Be proud of you, so proud. Never let you forget from where you came nor your culture and heritage. I promise to give you wings so that you may fly. And I will love you, Magnus Michael KeQin, until my dying day.

Our Family Day was better than I could have dreamed or imagined! Magnus slowly walked to me and I gently picked him up while kissing him on the cheek. He was quiet, calm, and stoic but I could feel his heart working hard as it raced. He was so brave yet his eyes were full of sadness, his body was drenched in sweat, and his breathing was labored. I realized how very sick our baby was and I wanted to hurry home so he could receive the medical care he desperately needed. As the day progressed, he let us slip multiple layers of clothing off his tiny body but we stopped as we reached his shoes which he adamantly wanted to keep on as security. The next day was full of appointments as we bustled around the city. Finally, we were all so happy to relax in our hotel room and played on the floor together for hours that night. After hearing his sisters’ giggles for minutes at length, Magnus cracked his first real smile and we heard him laugh for the very first time. It started as a giggle and turned into an all-out “someone call a timeout because I’m having trouble breathing” belly laugh. From that moment on, he started to bloom and showed off his big personality.

We thoroughly enjoyed our time in China and could have stayed three more weeks but knew it was time to cocoon at home. Once back in St. Louis, Magnus had multiple appointments with our pediatrician, cardiologist, and at the international adoption clinic. His cardiac diagnoses were confirmed and we were informed he needed open heart surgery within the next couple weeks to months. After extensive research and countless prayers, we made one of the hardest decisions we’ve ever had to make and decided to bring him to Boston Children’s Hospital for a full bi-ventricular repair.

Mags and I arrived the week before his surgery for pre-op appointments including a cardiac cath and MRI. Mike arrived over the weekend and we celebrated my first Mother’s Day as a mama of four! The big day (which I had both dreaded and looked forward to) followed on Monday and though we were filled with some nerves, we had much more faith in the One who led us to our son. As Magnus’s team wheeled him to the OR, I knew we could be handing our precious boy back to his Father. And if it was His will, we would learn to cope without being able to kiss those chubby cheeks and lips somehow.

As we sat in the waiting room, watching every other family get called back to see their child throughout the day, we prayed fervently and knew our son’s heart was in Dr. Sitaram Emani’s skilled hands. After nearly 10 hours, we were finally reunited with our little hero and informed that everything went exactly as planned! In Magnus’s CICU room, my eyes studied every part of his tiny body, focusing in on his chest for it held a heart that miraculously was beating as it always should have been. I wasn’t prepared to see how pink his little piggies and fingers were as I stared at them in disbelief. Pink had become my new favorite color and I couldn’t love it any more! And if that wasn’t enough, the nurse pointed out his 100% oxygen saturation on the monitor! Praise be to God, our baby’s perfectly imperfect heart was now functioning at 100%! I stroked his arm, held his hand, and told him how brave he was and that I was so proud of him. His little eyes fluttered and opened at the sound of my voice. He showed off how much of a little fighter he was and the nurse quickly increased his sedative so his body could rest. For an extremely emotional person, I somehow found the strength just as I did in China and did not shed one tear during his surgery or in the days to follow. I know with certainty that it was because I put my full trust and everything I had in the Lord.

The days to follow were filled with the expected ups and downs which accompany the recovery of such a big heart surgery. Despite being sedated, he charmed every person who walked in his room, especially the nurses. Some were moved to tears after hearing his story and were all anxious for him to wake but no one more than his mommy and daddy. We missed his spunky personality, deep brown eyes, loud giggles, and even his infamous growls. On post-op day two, his paralytic was lifted and his breathing tube was removed. We were thrilled with our strong Superman to say the least! He continued to do so well that he was moved to the step-down inpatient unit two days later. His doctors and nurses were astounded with his progress as they had prepared us to expect a three-week post-op recovery. After only spending three days in the step-down unit, Magnus was ready to be discharged to everyone’s shock and admiration. We walked out of the hospital together and never looked back! Just as Mike said to us as we left two weeks prior, he proved he was "Boston Strong"!!

Ten months have flown by since Magnus’s life was saved and he has continued to blossom into the most wonderful son, brother, grandson, great-grandson, nephew, cousin, and friend. Sure, we have some hard days because adoption IS hard. But we have many more “time-of-our-life” days! I have so many dreams for him in this world and know he is destined for greatness, as is every child. Finding Mags has changed me in ways that I never could have imagined. God led us directly to him and when He called, we answered. Our moments of fear have been quickly followed with answers of peace from Him…

And one of those answers is that we have another heart warrior son waiting for us in China! Soon upon arriving home from Boston, God started whispering in my ear that we had another child still waiting to be found. In August 2016, I found him and waited until Mike heard God’s call again.

On this courageous, little boy’s birthday in December 2016, Mike said YES again and we began the race to bring him home. Since he also has a very special and complex heart with a single ventricle, dextrocardia, atrial septal defect, ventricular septal defect, severe pulmonary atresia, and requiring oxygen while he sleeps, we are expediting the process again. In a couple months, we will continue to follow another red thread and bring our 4-year-old son home! We are still working on the perfect name for our perfect son and I will happily write about his incredible story next year! Will it be a difficult journey? Yes. Will it be scary? Yes. Will there be tears? Yes. But as you can guess, he is WORTH it! I will move more mountains for another chosen, loved, and priceless son. I am forever changed because we said YES…and I would do it all over again in a HEARTBEAT!

If you’d like to read about our journey with Magnus and follow our upcoming travels in China and Boston, we will be resurrecting our blog at www.threesistersandamister.blogspot.com.

We also made a video of Magnus’s first year home with us to celebrate our Family Day anniversary! You will be able to see us meet him for the first time and hear his unforgettable first giggle! You can view it at www.youtube.com/watch?v=ILIk4E1rY14.

Saturday, February 25, 2017

Day 25 - Bea & Beck

As I walked through the halls of Lucile Packard Children’s Hospital waiting for any word on how my son was doing, I tried to remember why I signed up for this. As I looked around at all the other families in the waiting room, I could feel the sadness, the fear, the desperation. As I heard their stories over the course of my stay, I understood how not so long before, their lives were normal and yet now they were faced with the reality of watching their loved ones go through risky, but hopefully life changing surgery. They hadn’t voluntarily signed up for their experience. But my story is a little different.

In 2013, when we decided to adopt Bea and Beck we knew little about their heart conditions. All we knew was that the Lord had led us on a winding journey to them, for Him. As we took one step forward at a time, we weren’t concerned about what physical challenges we were accepting because we knew that if the Lord matched us with them, then He also knew all the plans He had for us and we knew that they were good.

"For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope." Jeremiah 29:11

Over the years, we have learned more about the complexities of both Bea and Beck's hearts and we’ve learned terminology we’d never even heard of before.

Bea: Dextrocardia, Single Right Ventricle, Pulmonary Stenosis, Heterotaxy Syndrome
Beck: Pulmonary Atresia, VSD, MAPCAs

These children were created fearfully and wonderfully by God.

"For you formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them." Psalm 139:13-16

God’s Word is comforting.

In April of 2015, Bea had her first major open heart surgery. (Glenn procedure)

We were thankful for the successful surgery and we looked to the future with hope and expectation for her Fontan procedure the following year after Beck had his first major open heart surgery (Unifocalisation + multiple other corrections-shunt, VSD closed, conduit) up at Stanford.

Fast forward back to my hospital stay with Beck in April of 2016. After 12 hours of waiting in a hospital an airplane flight away from home and the rest of my family, I was finally met with great news. Beck had miraculously received a complete fix and we could expect a complete recovery for his now repaired heart. We praised the Lord for the amazing story of Beck’s life and 3 weeks later, we would fly home to be reunited with our family and prepare for Bea’s next surgery the following fall.

After coming off the high of Beck’s surgery, we prepared for Bea’s with hope and excitement. But after her cardiac cath, we were faced with confusing news. The team of surgeons responsible for her care had decided that the benefits of any further surgery would not outweigh the risks and we would need to accept the fact that our daughter would not receive full correction like our son. In addition, we learned that she will need a heart transplant someday, heavy news for our hopeful hearts.

As I took in the reality, I asked my cardiologist about next steps, about getting on a list for a transplant, about a second opinion. He kindly, knowingly, reminded me to enjoy today with her, then enjoy tomorrow with her. He sees outcomes like this every day. It’s his job. He knows.

Scrambling for encouragement, I looked to the Word of God and there I found the same. I am instructed not to worry for tomorrow, but to trust the Lord today. He writes the outcome. It’s His job. He knows.

Processing and accepting the dichotomy of having one corrected heart and one that remains broken, both under my protective wing, it will be my aim to enjoy each moment I have with them both, to count both of these realities as blessings from the Lord. He created them with full knowledge of the outcome of their stories. He is the One who beckoned our hearts to go find theirs. His sacrifice for me is why I lay down my life for them daily and do so because of love.

"By this we know love, that he laid down his life for us, and we ought to lay down our lives for the brothers. But if anyone has the world's goods and sees his brother in need, yet closes his heart against him, how does God's love abide in him? Little children, let us not love in word or talk but in deed and in truth." 1 John 3:16-18

And so, it dawns on me, the answer to my original question in that lonely hospital waiting room. That’s why I signed up for this. I did it and I choose to do it still ongoing for this simple one word reason…LOVE.

"No one has ever seen God; if we love one another, God abides in us and his love is perfected in us."
1 John 4:12

As a father, I do my best, trying to balance preparing for the future and living like there might not be one. I know that in all things our God works for good and He makes us more like Him through trials. I know His promises and they give me hope as a father striving to express His compassion to my children in the same way He shows me.

“As a father shows compassion to his children, so the LORD shows compassion to those who fear him.” Psalm 103:13

So much has happened since sharing our story here last year. Things haven’t turned out quite as we had projected and yet, there are no surprises for the Author of this story. He knew what we were signing up for years ago when we blindly answered Him, “Yes, Lord.” He knew what He had planned and He knows what He has planned. There have been highs and lows and there will be more highs and more lows, we can assume, and so it goes when we leap by faith and follow Jesus. So it goes, when we answer a call to care for the least of these in His name, when we venture into the mystery of adopting a little one(s) with CHD. There is confidence in Him. And this is what He’s called us to for His glory and to express His love. So we do it all with trembling and joy and even continued hope knowing what we know now…and we would do it all again.

Friday, February 24, 2017

Day 24 - Josie

It was a Sunday morning. I am perpetually late to everything in my life, so having an extra 15 minutes before church with nothing to do...that my friends, may be the biggest miracle of this story. I decided to sit down and open my bible, because obviously my husband is a worship pastor and therefore, I am super spiritual (insert huge eye roll)... Psalm 90 is what I read. The gist of it—our days are short and we need God to show us how to live, so we can get to it. Immediately I knew... the next chapter of getting to it for our family was adoption. My husband Chuck and I had talked to our 3 daughters about it more than once, but the timing seemed uncertain. That morning God said, it's time. Side note: I later found out that that day was national adoption day and that Psalm 90 was the only one written by Moses, a man who God used in unbelievable ways...a man who was adopted. Just tiny smiles of affirmation.

Around that exact time there was another story happening across the world, in Nanjing, China. There were parents whose hearts were no doubt being wrecked. They had to make a choice to save their 3 month old daughter’s life... by saying goodbye. A little girl was left in a box with only a purple blanket and a walnut bracelet on her tiny wrist, (the walnut is a symbol meaning the love of the family) and a note that read:

“This child has CHD. We love her very much but we are very poor and her mother has bad cancer so we can’t care for her. We hope she will find a family who will love her and save her life.”

We now pray that her parents will know, somehow, some way. At the very moment they were writing a note in hopes that her life would be saved, God was already writing a story of hope and redemption for their precious baby girl. He was moving in the hearts of a family in Tennessee to make their family of 5 a family of 6, and to put her in a place to receive incredible medical care at Vanderbilt University.

We have been home with Josie for a month and already we can’t imagine what life was like before she was a part of it. She has had exceptional care already and her doctors have been phenomenal. Today we found out her open heart surgery date at Vanderbilt is a month from now...hope for a complete repair.

We are so honored to be a part of her beautiful story. There is no doubt that God uses stories about physical broken hearts to speak to what is universal to all of us…stories of broken hearts all across the world, in need of redemption. And just like Moses... and Josie... he is redeeming ours as well…and writing stories bigger than any of us can imagine on our own. Beauty from brokenness. Plain and simple.