Thursday, February 23, 2017

Day 23 - Jaelyn Hope

Adoption is something that has been growing in our hearts since before Mark and I were even married. Even as our family grew to include five biological children, we continued to discuss the possibility of adopting. When our youngest was a year and a half, we went to an informational meeting about adoption and left thinking that domestic adoption would likely be the route we would go. The idea of traveling for a length of time to another country and arranging childcare felt daunting, plus having a larger family disqualified us from many countries too. We began praying daily that God would give us wisdom about whether or not we should grow our family through adoption and if so, when.

One night in May 2015, I couldn’t sleep and a Facebook rabbit trail led me to the page of Little Flower Projects, an NGO in Beijing that provides specialized medical care for orphans with complex medical conditions. As I scrolled through the photos of the precious children they cared for, one photo made me pause. It was of a baby girl who had just had heart surgery and I felt that I should take a screenshot of her and send it to Mark.

The next morning he woke up to my text of this baby girl and asked me what this was all about. He agreed that there was just something about her that looked sort of familiar, like she looked like our babies. We thought we should take another look at international adoption and see if our family fit China’s requirements. Two weeks later, we were sitting around the kitchen table with our kids discussing the possibility of adopting. I decided to pull up Little Flower’s Facebook page so they could put faces to the term orphans, and there, at the top of the page, was an updated photo of that same little girl I had seen two weeks earlier.

Our oldest immediately commented that the little girl looked like her younger sister and there was an instant chorus of kids agreeing and asking if we could adopt her. I will never forget that moment, I knew God was doing something big.

Ah, Lord God! Behold, You have made the heavens and the earth with Your great power and Your outstretched arm. Nothing is too difficult for You. Jeremiah 32:17

We spent the next several weeks trying to find out more information about the baby girl in the photo. We learned her adoption paperwork was in process but not complete and she was from an orphanage that didn’t have a partnership. We chose an agency that we hoped would give us our best chance at being matched with her, but we knew there was no guarantee. Perhaps God was using her to lead us to a different child in China. We tried to distance ourselves, tried to not get too attached to the idea that she was ours, but that was impossible. We loved this little girl and we were compelled by a great sense of urgency to finish our paperwork and bring her home.

Twelve weeks after beginning our homestudy, our dossier was submitted to China. We had done everything necessary and now we could only pray and hope her adoption file would be completed and given to our agency.

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

On January 12, 2016, almost three months after submitting our dossier, our agency called with the unbelievably amazing news that they had the file and we could be that little girl’s family. Jaelyn Hope was our daughter.

Jaelyn was expected to need another heart surgery soon so we worked frantically to finish the immigration paperwork required to bring her home. We were waiting for immigration approval when we received an updated photo that showed she was on oxygen, but we weren’t sure why.

Knowing our daughter was on the other side of the world and sick was agonizing. Our adoption agency did an amazing job of getting us to China fast. When it came time to purchase flights, tickets were priced incredibly low. Our children, who had worked hard and saved money, paid their own way and on February 23rd, our family walked off a plane in Beijing and went straight to Jaelyn’s foster home to celebrate her first birthday together.

Jaelyn was remarkably healthy while we were in China and her oxygen saturation levels were better than we were told to expect. She had recovered from pneumonia and was clear to travel without oxygen. The day after we arrived home, we had our first appointment with our local cardiologist. Jaelyn’s specific CHD diagnosis is pulmonary atresia, PDA, ASD, Ebstein’s Anomaly, and pulmonary stenosis. The doctor said he was cautiously optimistic that if much could be done via heart catheterization, Jaelyn wouldn’t need open heart surgery for many years. Since their cath lab was under construction, the doctor felt we could wait a few months until it was finished to do her cath. We were surprised, but left feeling relieved and hopeful for her future.

Unfortunately, Jaelyn’s good health did not last long. She caught virus after virus and her O2 sats dropped. Her mouth and fingers looked more blue and her little head dripped with sweat when she drank her bottle. She learned to crawl up the stairs but she was breathless by the time she reached the top. We became increasingly uncomfortable with waiting for the local cath lab to be finished. We reached out to a doctor with Little Hearts Medical who we had been consulting with and decided to fly to Florida to meet with him and have Jaelyn’s cath done there.

I am grateful for the adoptive heart mamas who share their stories in groups or on this blog, but no amount of information can truly prepare you for how it feels to actually live through your child’s heart surgeries. At the start of Jaelyn’s cath, her heart went into an abnormal rhythm and they had to shock it back into a normal rhythm. It’s a common complication with her particular CHD, but knowing that doesn’t exactly feel comforting when it is your child. During the cath, she had balloon dilation on her pulmonary arteries in the hopes of giving us a little more time before needing open heart surgery. We ended up staying in the CICU for a few days while her lungs adjusted to receiving a higher volume of blood flow and while we waited for insurance to approve a medication she needed. She was discharged on oxygen, and since arranging oxygen for the flight home was difficult, we drove the 1,500 miles home.

After we returned home, we obtained multiple opinions about what to do for Jaelyn’s surgical heart repair. We discovered there was a hospital close to home that specializes in Ebstein’s Anomaly, the rare defect of her tricuspid valve, and we met with the doctors and surgeon there. We learned medicine is both an art and a science as each opinion we received offered a slightly different approach as to how to best repair her heart. We wrestled with trying to make the right decision for her. We also knew that traveling far from home would be difficult and the hospital closer to home made logical sense, but after much prayer, we only had peace when we decided to go back to Florida for her surgery. This time, we wanted to bring our children with us instead of leaving them at home as we did when she had her cath. Being together during Jaelyn’s surgery and recovery would be good for all our hearts, and our wonderful surgeon arranged for housing close to the hospital so that would be possible.

Returning to Florida meant we had a team of people who knew us already—knew how Jaelyn fights sedation, how she is prone to post-op fevers, how easily her mama cries. We were confident in our team and we trusted God, but complications can happen and handing her off for surgery was hard. We knew that when we brought Jaelyn home, more than she needed her heart fixed, she needed to know the love of a family. We hoped and prayed through those long hours of surgery that we would get to be her family longer. At the end of the day, we learned Jaelyn’s open heart surgery went even better than we thought possible. Jaelyn’s tricuspid valve was perfectly repaired with the cone procedure. Her pulmonary arteries were patched open, she was given a pulmonary valve, and she received a subtotal closure of her ASD. Having the cath a few months earlier helped her recover more quickly as her lungs were already used to a higher volume of blood. The post-op days were the typical roller coaster of emotions and progress - often two steps forward, one step back - but Jaelyn recovered from surgery quickly and was discharged a week later. We are so thankful we had our family together during Jaelyn’s surgery and hospitalization.  Visiting with her big kids was some of the best medicine for Jaelyn.

Many people over the past year have asked us if we knew about her heart when we adopted her. We did. That very first photo we saw was captioned that she had a first stage heart surgery and would need more. Later we understood that first surgery was merely palliative and what the future held for her suddenly seemed less certain. I asked Mark if we should still move forward. For us, for our children, there was great potential for heartbreak. He answered that she was our daughter and she was worth the risk and my heart sang because his answer matched mine. We chose to love her and though it has meant taking step after step into the unknown, each time we’ve landed on solid ground—and I know that remains true for whatever the future holds.

We expected Jaelyn would need future valve replacement. Her surgery was completed in a way that would allow her pulmonary valve to be replaced via cath in a few years. Unfortunately, we recently learned that Jaelyn’s new pulmonary valve is already no longer functional and since she’s too small for cath placement, she will need another open heart surgery soon.

Bringing Jaelyn home and getting her the medical care she needed has been challenging and it has changed us all, but for the better. We saw things in China, as we traveled by train through the Chinese countryside and walked the halls of Jaelyn’s orphanage, that we cannot unsee. Our journey through this last year has given us a greater understanding of what is truly important in life and a deeper appreciation for everyday blessings. We have lived the realness of God—trusted Him through much uncertainty and have seen truly miraculous things happen. We trust God will continue to see us through every step of the way.

Wednesday, February 22, 2017

Day 22 - Noah Roberts

I feel like adoption has always been on my heart. God planted that seed a long time ago. We adopted our first son, Caleb, in 2003 from South Korea. This was our first time adopting and we were first time parents. It was character building to be given a baby you don't know and board a plane for 16 hours!

Shortly after Caleb was home I was pregnant with our second son, Nathan. And not too long after that came 3 more biological children…Caroline, Joshua and Jonathan. We actually thought about adoption several times during those years of biological children but every time we did, the timing seemed to be off. In April of 2014 we began our homestudy to adopt from China. In May, I saw a face on our agency's waiting list. We asked for her file and it was fairly outdated. She had TAPVC and it appeared to be unrepaired. It took forever, but we received an update and she actually had received surgery in Beijing to repair her heart when she was 18 months old.

In Feburary 2015, we brought home 2.5 year old Hannah Grace. Her repair was done very well and the heart baby we thought would need intervention actually hasn't needed a thing outside of normal check ups. She is quite possibly our healthiest child.

In Dec 2015, a sweet boy captured my heart on our agency's waiting list. He had been waiting a while and was due to go back to the shared list.

Noah’s needs were far greater than Hannah Grace's...single ventricle, TGA, pulmonary atresia, heterotaxy, dextrocardia and the list goes on. Honestly, I didn't really understand what all of that meant at the time and I think God sometimes lets us know what we need to at the moment. We said yes to Noah and actually said yes to our daughter Rachel (who has biliary atresia) as well. We encountered many delays in this adoption including a life threatening illness for my husband but finally, in September 2016, we brought home two, 2 year olds.

With a complex heart kiddo like Noah you kind of hold your breath until you get to that first cardiologist appointment.

They said Noah’s heart function was good and we would wait until he was 3 to do the next surgery. Over the last couple of months he has become more and more cyanotic as he is outgrowing his Glenn. It's hard to see him breathless after walking only 10 seconds. He recently had a cath where a coil and stent were placed but the Fontan surgery will likely be in April or May.

We had really hoped that he might be a candidate for a full repair and consulted with Boston but they said it was too risky. It's hard to take in the finality of only being able to do the palliation surgery. However, the flip side to that is that he is operable and we are grateful. God knew that Noah wouldn’t be able to be repaired and He is still good. The Lord knows the number of all of our days.

We have only had Noah as our son for 5 months. Noah has been battling his CHD since birth and had three surgeries in China…alone. Our journey with Noah has just begun and we are honored to walk this difficult road with him with both joy and hope whatever comes our way. I really dread him having to endure another open heart surgery but this time he will have his mama, daddy and 7 brothers and sisters by his side.

Tuesday, February 21, 2017

Day 21 - Josie NiNi

It wasn’t too long after I signed up to write an update on our Ms. Josie that I started to wonder what in the heck I’d done. 

It isn’t that I don’t like to tell her story - it is a sweet and amazing tale (if you want to read the start in detail see here.  God did some pretty incredible things to put this girl into our family), but to my mind a story should have a beginning, a middle, and an end. 

We have a beginning (or two), a middle . . . but we have no end.

The short story is - Josie was brought home with the doctors thinking they knew what her heart condition was - and the doctors were wrong. 

She was declared inoperable by our local Children's Hospital.  The pressures between her heart and lungs were measured at 4.5 - Operable is under 4, normal under 2.5 or so... Operating was too risky.

So we sent for second opinions - and CHOP and Stanford presented us with plans for a partial repair to take some of the stress off her heart. 

Sanford had the “safer” plan, so we scheduled.  And a few days before her surgery the PH specialist sent an e-mail saying they felt they could do a complete repair.  And so we did.

Josie came home on oxygen a medication inhaler 3x a day and looking and feeling pretty good.

But here is what I found out later.  Josie’s heart defects meant that exact measures were not possible.  Her pressures were not 4.5.  They were a frightening 14-15.  It had been so much worse than we thought.  I still don’t know if that surgery would have happened if they had known her true measures.   The surgery dropped the pressures to 9.  Still severe and scary high.

And then, a few months later, during a regular checkup, we found Josie was in heart failure.  She needed to go back to Stanford again. 

This time she came home on stronger medications given through a 7x24 pump system.  She carried a pump on her back 7x24 for the next 3 years.  No swimming, no vigorous sports.  But the medications kept her out of heart failure and growing.

We had hoped that the stronger meds would allow her heart and lungs to heal as she grew.  For her that has not happened.  She has stayed steady at 9 - no better, occasionally worse.

A year and a half ago we had an opportunity to enroll Josie in a clinical trial for an oral medication to replace the pump. We jumped at the chance even though this medication has pretty mixed reviews.

It was tough.  The switch took a week in the hospital. 

We had to fly to Stanford as often as every three weeks.  And the side effects were nasty.

But the medication came close enough to working that we were able to pull out her central pump line 10 months ago.  We got a summer with no pump and swimming and BEACHES.

We are still increasing the med to see if we can get her to a better place medically. 

But here is the thing about heart kids.  They are pretty awesome little people. 

Our Josie has decided not to worry. To just live live with the pumps and without them.

For someone who has had so much hospital time she has very little medical anxiety.  She has a brave heart, and a kind one. 

Josie knows the value of family and loves us to pieces. 

She is very aware of others hurts -and very kind and thoughtful to others.

She patiently works so hard to overcome.

She has very little fear (maybe more might be good).

This child needed us to survive.  What we didn’t know was we might just have needed her to really live.  In so many ways this brave brave child is our hero.   She has been the teacher as well as the taught.

We would have an easier life if we had passed on her file, but we would not have had a better one.

Need a hero in your life?  Just asking . . . .

Monday, February 20, 2017

Day 20 - Hope, Benjamin, Evie & Elijah

The truth is I wasn’t going to write for this blog this year.  I thought I had pretty much said everything that I had to say about our heart kiddos.  I thought it was time to hand the reins to someone else with a new beautiful story to share.  Then I received a message on Facebook asking me if I would share the miracle of Eli’s story that I had recently posted about on our family’s Facebook page, Seriously Blessed by Adoption, and I agreed because I LOVE Eli’s story.  
I have spent the last couple days reading back through my previous posts on 28 Days of Hearts.  These posts tell the story of our journey to our heart kiddos.  It’s been an amazing, miracle-filled, heart wrenching, faith building ride.

2013 - 2014 - 2015 - 2016

Adoption brings with it the highest of highs and the lowest of lows.  I know that people are fearful of stepping up to adopt these children with heart issues, but the truth is, for our family,  the hardest part of adoption has NOT been the physical healing of a child’s heart but the emotional healing of a child’s heart.   That’s not to say going through surgeries is easy, but the day to day healing of years of hurt has been a much bigger issue.

I recently read a book that deals with this issue.  It tells Amy Eldridge’s story starting from trying to get surgery for a heart baby that she met in an orphanage while adopting her daughter and ends with the heart story of our 17 year old daughter, Jasmine, who was adopted two weeks shy of her 14 birthday.  Anyone who has adopted from China knows what that 14th birthday means.  At 14 you age out of the system, which means you are no longer allowed to be adopted.   

Our journey to our heart kids started with Hope.

A baby with hypoplastic left heart syndrome who was left at the hospital to die when her biological parents chose not to treat her and the pre-selected adoptive parents backed out of her adoption.  My husband, who was doing his fellowship in neonatology, fell in love with this sweet baby, and the rest is history as they say.  There were many, many miracles that brought Hope to our local children’s hospital and many more during the three surgeries that would save her life.  She is now almost 18 years old and is doing amazingly well.

When we decided to adopt again, Hope asked us to adopt a little boy with the same heart defect as her.

We nicknamed him Tigger and our family starts praying that we will find our boy.

We find our Tigger and bring him home only to be told that there is nothing that can be done to fix him.  The mamas in our China heart group on Facebook recommend that we look to Boston for a second opinion.  We do and Ben has surgery but we are told that they can’t close his large VSD because the pressures in his lung are too high.  This past May we got the most amazing gift when Ben’s lung pressures were low enough for them to close his VSD.  This was something we thought would never happen.  Ben is now considered completely healed. 

This brings us to Elijah’s story. 

After adopting Ben and Maisey, we end up on a crazy ride that leads us to adopting four children at the same time.   We had talked with our social worker at the very beginning of starting this adoption process and asked her to approve us to adopt four.  We had no idea why God was saying “four” but we knew that is what we were supposed to do.  We knew that China only allowed families to adopt two children at a time.  We had two adult children, going to college, living in an apartment on our acreage, and my husband who is a physician does most of his work from home and works a 24 hour clinical shift every weekend.    Because of our extra help, our social worker approves us for four and we proceeded on our journey.

We saw a picture of a little boy being treated by the New Hope Foundation.  He was considered terminal in China and had not been made paper ready.  Ben and I fall head over heels for this little boy.  Ben knows in his heart that this little boy is his brother and we ask our agency to ask the orphanage to make him paper ready.  We let them know that we understand the severity of his heart defect and want to proceed anyway.  His paper work is begun but will take an excruciating 8 months to finish.

During this time were matched with a little girl with PKU and waiting for Eli’s papers when our agency sent us the file of a little girl with a severe cardiac disease. Our agency knew this little girl had very little time left and they were unsure if Eli’s paperwork would ever become available, so they asked us to consider adopting her. 

I wouldn’t even look at her file because we were waiting for Eli’s paperwork, but Dan did.  He said he had a 1,000 reasons to say no but all he could say was “why not?”    Trusting God and His plan, we proceeded with our Letter of Intent for Evie assuming we would just go back on a separate trip and adopt Elijah.  We were now matched with two. 
A two year old with PKU and a 26 month old, 13 pound, very blue little girl (oxygen sats in the low 50’s) who was fighting as hard as she could to hang on until we got there. 

Later Dan and I were reading a blog on Love Without Boundaries and came across a story of an aging out girl and even though we had always said we would never adopt an older child, we knew in our hearts that she was our daughter.  We asked for special permission to adopt a third child, and since she had only a few months before she would age out, we were granted permission. 

We were six weeks away from traveling for our three girls when we got notice that Eli’s paperwork was ready and the director of his orphanage felt like Eli needed to be expedited.   We asked our agency to ask China if they would consider allowing us to adopt four at a time.  Because of our unusual circumstances - having extra help at home, Eli’s need to be expedited, and Dan working from home - they allowed us to adopt four at a time.  Our agency agreed that we could proceed as long as we took one adult for every child on our trip.  Lucky for us, our adult daughter had gotten the required shots the previous year. 

We were over the moon excited when we heard that they approved us for four and then reality set in.  How were we going to pay for this?  How soon could you get a loan against your 401k?  We had already maxed our credit cards to pay for travel.  Could we apply for another card and get it in time?  I cried out to God over and over again that morning.   How were we going to do this?  I remember taking a deep breath and saying out loud to God “I’ve been blown away by everything you have done to make this year possible.  I will try my best to not start worrying now.  Lord, please give me peace to continue to trust in your plan and show me what we need to do.” 

On the very day that we heard they would allow us to bring Elijah home, we received a check in the mail, from the university where Dan did his residency/fellowship, for taxes that were wrongly taken out of Dan’s check for a few years starting in 1995.  The amount taken out didn’t add up to all that much but the interest for the past 18 years did.  I sat there holding a check that was enough to pay for everything.  We were NOT expecting this check and were completely humbled by God’s provisions. 

I know people think we were crazy for that year.  I remember saying, “God you can’t possibly be saying what I think you are saying.” BUT we heard Him over and over again that year.  Each and every time some new issue would present itself, God would provide in amazing ways and it all started with us being obedient to the call to ask for four on our home study.   Without that start, we wouldn’t have had enough time to get the paperwork changed to bring Elijah home with the girls.

Eli was born without main branch pulmonary arteries.  He now walks around with arteries that were made from his four large collateral vessels and some grafting material, during a 14 hour surgery by Dr. Hanley at Stanford.  He is now considered completely healed.

Eli is an amazing blessing. I'm so happy our journey has not been based on how great my faith is or how strong I am or how much I can do, because we would have missed the most amazing, miracle-filled, beautiful journey, if it was based on what I can do.

With 16 children, 13 still at home, life can be hectic, busy and loud, but it is also unbelievably amazing watching little hearts heal.  Laughter, hugs and kisses fill my days.  I have been given the most beautiful gift.  Every morning, I get to wake up to these sweet faces.  It is a daily reminder of the miracles that we have been allowed to see.  Who could ask for more in life? 

We are truly SERIOUSLY blessed!