Monday, February 9, 2015

Day 9 - Juliet & Jade Fussell

A few days ago the CEO of our Florida Hospital for Children paid a visit to our room and very sincerely asked "Did you intend to adopt heart kids, or is that just how it worked out?"

That answer is both yes and no.

Adoption was something that I envisioned part of my life for as long as I can remember.  It felt very natural to want to meet the needs of orphans in that way.  In high school, I read about Chinese children being abandoned just for being born a girl.  When I got married to my high school sweetheart we talked about adoption as something we would do in our future.  We were young, had med school and life ahead of us.  Five years into our marriage we were blessed with the birth of our smart and spunky son.  I had a wonderful pregnancy and birth but felt that when we wanted to expand our family that we would adopt.  There were so many children who needed families.  I couldn't shake what I had seen and read about the orphans in China as a teenager.  For several years I had followed stories of those that had adopted and specifically those that had adopted special needs children.  We felt like we were in a place that we could provide for a child that couldn't get the care they needed in China.  We weren't looking for a "heart baby".  In fact we weren't really looking at all in July 2012 when I saw our daughter's face on a waiting child list.  

She had previously had a family pursuing her adoption and couldn't complete it.  Her photo captivated me.  Her eyes seemed to look directly into mine.  We weren't signed with an agency and really hadn't talked about now being the time to adopt.  I called the agency to ask about her.  After a few emails back and forth the file was sent to me that night.  Complex CHD was her diagnosis.  I had learned about the heart in medical school, but I'm a foot and ankle surgeon, just about as far away from the heart as you can get.  I was able to get a pediatric cardiologist to review her file and I'll my heart heard was yes surgery can fix this.  I preferred to remain blissfully unaware of any other possibility. We prayed about it for the 72 hours we were given to decide and knew this was our girl!  Juliet Yilan was born in September 2010 in Guangxi China and placed forever in our arms on March 25, 2013.  She was so tiny and pale, but well loved.  We found out when we came home that she was in the beginnings of heart failure.  She would sweat profusely when eating, drinking, or with any exertion, but didn't seem to be bothered by it at all.  She was brave and strong and underwent open heart surgery 1 month after being home on April 30, 2013.  She had an extremely large ASD and VSD with pulmonary hypertension.  She did amazingly well with surgery and was out of the hospital in 4 days!

She continues to surprise us all with her strength and bravery.  She has what her cardiologists expect to be a complete repair with her heart failure reversed and pulmonary hypertension resolved.  

God knew what he was doing when he placed Juliet in our lives with her textbook heart repair and recovery.  If we had experienced what we are going through right now with our second heart baby we might not have been brave enough to do it again.  Oh but I'm so glad that we did!

We thought we were done with our family.  We had our son, our daughter, 2 dogs, an SUV we comfortably fit in....our lives were calming down and getting easier.  Life was good.  But God had something BETTER!

Then I saw her face.

I was only there to advocate for other heart kids with our agency.  I asked about her file and was told it wasn't ready.  I advocated anyway.  There weren't any takers, her complex CHD was scary.   When the file was ready my agency sent it to me along with updated photos.  The sadness in this little girls eyes was beyond anything I had seen before. I could not get the sadness and the pain of that little one out of my head.  I sent it to my husband who was surprised but agreed to pray about it.

That same night he called and said "Well what are we going to name her"?   That was his yes....and ready or not here we go.  Our cardiology team who treated Juliet was more than happy to review the file.  Little ShiYu was more complicated than Juliet they said and she needs to come home quickly.  Again all my heart heard was that we can help this little girl and we can fix this.  

We worked furiously to bring her home in 4 months from seeing her file.  On November 17, 2014 a tiny and blue little girl was brought to us at her orphanage in Sichuan China.  She looked right at me and said "Mama".  My heart was forever hers!  We quickly realized she was much sicker than Juliet.   Her fingers and toes were purple and her lips were blue most of the time.  She was the size of a 12-18 month old at 3.  

Our little Jade was fierce!  We call her our spicy Sichuan sweetie!  She could not walk far and preferred to be held, but she was loud and spunky and had an opinion about everything.  The orphanage told us she was shy and scared.....not our little Jade Catherine!  We enjoyed China and tried to forget about all that was going on in her heart.  

We saw the cardiologist for the first time 2 days after coming home.  We were there for over 3 hours and got several wide eyed looks from the doctors while we were there.  They all kept asking how old she was and are we sure she was really 3?  Her heart was complex and they said it was amazing that she was alive.  She has a heart that is similar to a Tetralogy of Fallot (TOF) with pulmonary atresia, absence of pulmonary valve, ASD, VSD, and MAPCAs.  Not long after we were home her oxygen saturations were dropping into the 40s and 50s and we were put on oxygen at home awaiting her surgery.  Surgery got pushed back due to other complications and we finally went in for her heart repair on Jan 13, 2015.  She was to have the Rastelli procedure, unifocalization of her MAPCAs and closure of the ASD and VSD.  Her surgery took 11 hours.  After her repair the right side of her heart started to fail and they had to go back in and open back up the ASD and VSD.   Her brilliant team worked tirelessly to stabilize her very broken heart.  Ans she has come such a long way!

I am writing this now in the ICU as I watch my precious baby girl sleep.  As I watch the rise and fall of her chest I am thankful for each and every breath.  Our one week stay has turned into almost 4 weeks.  We have had our struggles but, Jade, she is a fighter!  Her little heart should not have kept beating for 3 years as broken as it was, but it did.  God has huge plans for her.  Had we known the heartache and the fears the past month has given us maybe we would have questioned God, but I'm so glad we didn't.  Never once has God left us alone through this.  He has provided the right doctors and nurses and friends to support us and our girl.  She is amazing and she is a GIFT!  We don't know what would have happened to her had she remained in China, but the doctors tells us she may not have survived much longer.  She may have suffered without a family, and now she suffers for a time, but she is LOVED and celebrated.  We know that Jade has many more procedures and surgeries to come but she will have a family to go through it with her; to cry with her during hard times, rejoice with her even in the little victories and to love on her all the days of her life.  


Andrea O. said...

I enjoyed reading your story from the beginning!

Jenny Marrs said...

Absolutely beautiful! I love how God prepared your family so faithfully for what was to come. Praying for sweet Jade!!!❤️

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