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.


Andrea Olson said...

Thanks for sharing, Melinda!

Post a Comment