Friday, February 17, 2017

Day 17 - Emmalyn

We were asked to write our story as a part of Congenital Heart Disease Awareness month, and then when we found out that we didn’t need to anymore, I continued to write.  I wasn’t sure why, but I felt like I needed to have our story about adopting Emmalyn recorded from the very beginning.  Today I was asked again if I could fill in and write about adopting Emmalyn, and I was able to say yes.  I already had our story about becoming her family written, and if hearing our process to becoming a family to a child from China who was born with congenital heart disease might help other children find families, I feel humbled to have the honor of sharing.  

We said yes to adopting our 20 month old daughter, who we are naming Emmalyn, less than two months ago, and we are just beginning our journey as parents to a child with congenital heart disease.  She is not yet home, so there are a lot of pieces of her story that we just don’t know yet.  Our daughter’s heart, we have heard, is “unique in a good way,” but truly until she is here, we cannot fully understand what future care she will need.  We still have so much to learn.

When a family begins the process to adopt, they are required to fill out a black and white checklist that includes every category of medical illness. Families have to decide not on a child, not on a unique individual, but on a medical need. While we fully understand the point of this, it also becomes a scary, limiting process that with every adoption has bothered us, and it’s something we’ve created but later refined. It is hard to read facts and statistics about medical needs as agencies tell you to, to think of possible difficulties in life, and check yes or no.  While it’s a seemingly important initial step, it also excludes families. It limits people from learning about real families and real kids, from meeting incredible kids with a wide variety of needs, and it limits some of the incredible blessings families might experience if they’d been more purposeful about learning and reaching out to others.

Our daughter Emmalyn is our fourth adopted child, and our second child born in China.  Annalise our third child was also adopted last year from China and when we initially were matched to her, her medical needs on paper were much more complicated than they turned out to be in reality, and while that isn’t the norm, in the wait to bring her home, we learned to see on a deeper level that a child is so much more than his/her diagnosis.  Kids are first and most importantly just kids, no matter what additional struggles they fight. Andrea Duke Olson who connected us to Little Hearts Medical and who has answered countless questions for us has reminded us of this many times.  

If we’d strictly followed initial medical checklists, we would have missed out on finding our daughter Annalise, and we might have missed Emmalyn.  We really have never followed the medical checklists in any clear cut manner, and for this we are thankful.  

We did not begin our most recent adoption process specifically looking to adopt a child with a heart need, but we were always open to it.  We do not have a background that includes anything related to congenital heart needs.  The only time we have ever been to a cardiologist was a number of years ago when our five year old needed to have his heart murmur checked. His murmur was benign, but at the appointment, we formed a relationship with his doctor who loved talking about both adoption and literature, and whose experience with heart babies from China was interesting.  He had many stories to tell.  When we finally left the appointment, Dr. Driscoll handed me his card and wrote his personal contact information down in case we ever decided to adopt again.  He seemed to think I might want it.  I carried that card in my purse for three plus years. Someday I will give it to Emmalyn.   

The December day we first saw our daughter started like any other day, except I had a little extra time that morning, which was super unusual for me.  I was up early that morning, and as I sat down at my computer, I decided to take a peek at the waiting child page for one of the agencies we had considered using for our 2016 adoption, an agency we considered ethical, and who I heard recently had many waiting children being added to their list.  

When I scrolled down the agency waiting child page, I saw the words “complex heart” before I saw anything else. I saw her age, her advocacy name, “Jenny,” and then, with perfect clarity, I saw our daughter’s face beautifully smiling back at me.  She had the brightest smile and the skinniest legs I’ve ever seen on a little girl, and something in my heart just knew that she was our child.  While I realize this sounds cliche, it’s the truth, and it would be dishonest to her story to leave it out.

I opened the link to the information about “Jenny” with a racing heart to read more about her. I didn’t want to let myself get attached until my husband saw her, so I quickly sent him the link.  I also emailed the agency to see if she was actually still waiting for a family. With shocking speed, I heard back that she was still waiting, and I also got an email from my husband that brought tears to my eyes.

Normally, when I send Mike information that he’s unsure about, he replies that he is busy and will look later.  This is code.  I know this because we’ve been in this together for a while, and we do a pretty good job about respectfully making big decisions together.  He is very cautious by nature, and I was worried he would be uncertain because Emmalyn’s heart need categorically was considered major. We’d always discussed adopting a child with a minor heart need or even potentially a moderate heart, but more complicated than that, and we’d been uncertain.  

Mike’s response when I sent him the link to “Jenny” was, “We have a lot to discuss. Please send me all the emails and files you have about her.” It was all I needed to know she was on the way to becoming our daughter, and that he already wanted to bring her home.   

We both knew that we had a lot to learn before we’d feel like we were qualified to actually send the letter of intent (LOI) to China asking if they would allow us the honor of becoming her family. She was on hold for us though, and we were given one week to learn everything we could before submitting LOI.  We really didn’t know the majority of the medical terms in her paperwork, and we had no idea what her future needs would be.  

Every time I read her file, I regretted not studying something in college that would have given me more understanding of the human heart.  I knew if I had taken the classes in college I would have some of that background knowledge, and I was saddened that I was incompetent in comprehending the story her file would tell me. It was a story coded in medical jargon, the story of all that the little girl we hoped was ours had endured without us.  Her file told the story of her scars and of her strength.  It was beautifully complex and very intimidating.  We wanted to do best by this little girl who already held our hearts by a thread, and we could not say yes to being her family without understanding her medical history; it would have been irresponsible and unfair to her.  For this, we needed help.    

Medically we found support and information through a number of doctors at Mayo Clinic Rochester.  Dr. Driscoll who we met earlier was willing to share his opinions and advice even though our information was limited to what we received in “Jenny’s” file. The other doctors at Mayo Clinic who we emailed took longer to respond, so we were thankful to have his immediate feedback.  You don’t get a lot of time to decide on whether you will adopt a waiting child or not because if one family held onto a child’s file for a long time while thinking, it would cause the child to wait even longer for a family. Nobody wants that for any child.  

While Dr. Driscoll was giving us feedback, we also asked for a cardiac assessment from Little Hearts Medical, an organization whose mission is “to bring life-saving cardiac care to orphaned and impoverished children in China.”  They provide free cardiac assessment and support to adoptive families as a part of one of their programs.  I read on their website that in 2016 the organization assessed 157 medical files of children with complex cardiac needs in China, and Emmalyn’s was one of them.  

At first, we didn’t know if we’d be able to get information through Little Hearts because there was a waiting list, and we didn’t want to hold up “Jenny” from being matched. We were prepared to go forward only on what we learned from Mayo Clinic, which honestly, was very informal and contained very vague information.  Initial information from a secondary doctor at Mayo gave us a small amount of helpful information, but we didn’t have clear imaging of her heart at that time.  We learned only this, “The current echo reports look satisfactory with good results. But it is hard to be certain without images.”  That sentence is what we had to go on.

The review information from Mayo Clinic was nice, but we still didn’t feel well enough informed.  The review from Mayo Clinic was not as thorough as what we knew Little Hearts would provide if they were able to complete a review, and we prayed they would find room to review the little one we prayed was our daughter.  A short time after hearing it might not work for them to review her records, we got another email saying a doctor was available, Dr. Laurie Armsby.

Dr. Armsby, the medical director of Little Hearts was going to assess “Jenny’s” file for us.  I’m not sure if she normally does this, or if she was helping out because the list for requested medical reviews was getting too long. I didn’t ask, but we are so glad she made time. She was an instrumental part of our story to becoming Emmalyn’s family, and we can never thank her enough.

Dr. Armbsy provided a number of pages showing what Emmalyn’s heart looks like, how it works, it’s differences, and a list of potential scenarios for Emmalyn’s future medical care. It was written in language we completely understood.  It even had pictures.  I cried when I received the document. I cried tears of joy that I was beginning to understand our daughter’s history and her health.  It’s very hard to love a child and feel like you don’t know what they need or even if you can help them.  Having this review allowed us to have real in depth conversations about parenting Emmalyn.

Not expecting information to be available, but trying nonetheless, I requested images of Emmalyn’s heart from our agency contact in China, and unbelievably we received what we asked for only a few days later.  I forwarded images to both Dr. Armbsy in Oregon and Dr. Driscoll who was on vacation in Florida.  Dr. Driscoll responded the same day after seeing the echocardiogram, “The echo shows that her right ventricle is a very good size. This echo is quite reassuring.”  Dr. Armsby also was able to review the single poor quality image and provide feedback that we felt was cautiously optimistic.

We truly still do not know many things about Emmalyn’s heart.  What we do know has given us a starting place, a starting place of hope.

One part of Emmalyn’s information is interesting, and very unique, and the surgery that she had in Shanghai during her first year of life appears to have been fairly successful though we know she faced some complications during healing.  Some elements of her surgical records do not seem to match exactly what would be expected for her condition, so we can’t wait to get her home and figure out which information is correct, and how her very special heart works.     

After reading through the assessments and discussing subsequent emailed conversations provided by the Little Hearts Medical director, and after talking and praying about what we knew, what only God knew, and what we would not know for certain until she was home, we both felt we were prepared to send our Letter of Intent to ask China to pre-approve us to become Emmalyn’s family.  We were educated about her needs, and we were ready to commit to be her family forever and unconditionally.    

Even after we received pre-approval for Emmalyn, we’ve been so grateful to be able to correspond with the doctors who reviewed Emmalyn’s information for us as we’ve had a few questions. We can never thank Dr. Laurie Armsby enough for her assistance and assessment. We are also thankful that Dr. Driscoll so long ago offered to provide counsel, and that he generously and expeditiously responded to our every question.

None of this process occurred without hesitation. I’d be misleading you if I said the process was filled with sparkles and fireworks.  It is very difficult, and we don’t even have Emmalyn home yet.  This is just the beginning.  Throughout this process we have felt worried about our own shortcomings.  As we processed everything we knew and soaked up what we learned about Emmalyn, we wondered, if we were good enough to be her family.  That is still a fear we struggle with. We definitely wondered if we could provide Emmalyn with everything she’d need.  For some reason in my mind especially, having great affluence always felt like a requirement to adopting a child who might someday require heart surgery, and we are just two junior high teachers.  Talking with typical families who’ve adopted children from China with complicated hearts has erased this concern from my mind.  It does not mean we are naive or think every step will be easy, but we feel prepared.

Talking with families from all different walks of life parenting adopted or biological children with congenital heart needs grew our minds and helped us see more clearly.  We had all the basics that were required, and with every question we were asked, we said, “Yes, we have access to that,” or “Yes, we can do that.”  Our answers to daily life questions about parenting a child with a complex heart included questions like can we multi-task, can we communicate well and make medical decisions as a team, can we find the rainbow in the storm, can we accept an uncertain future, can we be flexible, and can we love a child in sickness and in health for as long as she is ours on this side of Heaven.  Every single answer we had was a yes. These daily life considerations became more important than our worries about fictitious future health obstacles or our own insecurities.

The only thing that we are still learning about is our ability to determine if our daughter’s care can occur at Mayo Clinic which is good and which is local for us, or if our daughter has a level of complexity which at this point requires the absolute best. Boston Children’s, based on surgical volume, experience, and outcomes, is the very best, and if Emmalyn needs that, will we know how to fight for her to get what she needs.  Will it be difficult to get insurance coverage if we think her heart needs Boston?  We are learning about this and currently wading through the steps to getting insurance referrals for specific clinics.  So far we have a list of tests she will need once home, and a tentative appointment to start with a recommended cardiologist here in Rochester.  Dr. Driscoll is too close to retirement to become Emmalyn’s main cardiologist.  

As we move forward, we continue to think about how lucky we are that we get to bring Emmalyn home.  We look forward with thanksgiving and praise for the journey.  We GET to be Emmalyn’s family!!!  We also understand that God doesn’t call us to do things we can do easily on our own.  He calls us to follow His will, and to trust in Him as we walk the path to which He calls us. We are positive that when and if we need advice after Emmalyn is home, we will find answers and support in the community of families who have brought home children with heart disease and from the doctors who care for children born with CHD.

We are continually in awe of the people we’ve met along this journey, the amount of compassion others have for waiting children, compassion that isn’t just words but is shown in actions, and we are in awe of the number of lives impacted.  It’s a multi-level ripple effect of change that is miraculous.  We see countless families living lives of service to little ones; there are so many people who give so much. The number of mentors we’ve gained throughout the past few months through people sharing their stories, their advice, and their inspiration is something we will never be able to repay, but we hope we can pay it forward when opportunities arise.

While we wish so much that Emmalyn had not faced her first major heart surgery without us by her side, we are also thankful that we get to be her family and be with her very soon.  We are thankful for all of the individuals who have given us advice on bringing her home quickly through a medically expedited process.  At this point, we think her entire adoption process from the moment we saw her until she is in our arms will be under 6 months. We could not have done this alone.  When we first saw her, we did not even really know what a medical expedite was or that we should request one because of the uncertainties about her heart condition.  We are learning as we go from other moms of children adopted from China with CHD.  

We have come a long way this past year.  To say yes to adopting Emmalyn, our daughter, we said yes to loving her exactly as she is for exactly as long as we get to be her family.  

We chose to live every day forward with Emmalyn as our daugher focused on appreciating each day.  We will be adopting her this spring or at the latest very early this summer.  We realized at the beginning of Emmalyn’s adoption that we could live our life worrying about what might come, worrying about the reasons to be uncertain, or we could focus on love and have hope.  Colton Dixon says in one of his recent songs, “Hope sees the stars, when doubt sees a mountain.”  That is so true.

We have a greater hope than can be found in any of our own understanding in this world, a hope we can share with Emmalyn as she grows up.  We have seen over and over again that the ability to find joy in life is the most important part of becoming a family to a child born with congenital heart disease.  Emmalyn will always have heart disease even if she lives a normal life.  It will always be a part of her.  We are so happy that we get to be the ones to teach her that she is strong, that she is beautiful, and that her heart is a miracle.  We will always teach her to have faith and to see the goodness in life's struggles.   We will teach her that hope is truly all that matters, and hope rises and shines if you let it. 


Andrea Olson said...

Thanks for sharing! I'm glad we could help you at Little Hearts Medical!

LisaE. said...

Thank you so much for sharing your story. Congratulations!

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