Friday, February 19, 2016

Day 19 - Ada Grace Varnon

In December of 2013, we brought home our first adopted son, Asa Grant Varnon.

During his two years in China, Asa was loved and cared for by the wonderful nannies and staff at New Day South.

This allowed Asa to attach and adjust to our family quickly and smoothly.  His adoption process convinced us that we wanted to adopt again.

Four months later, we spotted another New Day South treasure on our agency's waiting child list.  We quickly inquired about this princess only to learn that several families were already viewing her file.  We added our name to her pool of interested families and prayed for the Lord's will to be done.

Within a few days, we received a phone call from our agency.  Our social worker asked if we were still interested in adopting the little princess from New Day South.  As it turned out, after having her file reviewed by cardiologists, the other families couldn't commit to her medical needs.

Our little princess had a list of diagnosis, all of which we knew nothing about.  All we knew was she deserved a family regardless of her life expectancy.

We named our little princess Ada Grace Varnon.

Ada was diagnosed with a complex congenital heart defect called Double Outlet Right Ventricle, DORV.  She also had a Atrial Septal Defect, ASD, Ventricular Septal Defect, VSD, and Patent Ductus Arteriosus, PDA.

In the orphanage in China, Ada shared a plywood lined crib with two other heart babies.  The staff at New Day South visited her orphanage and analyzed the three babies' medical needs.  They decided to help the most fragile baby, but by the time they returned to the orphanage, two of the fragile babies had died.  Our princess was a survivor.

Ada was taken to New Day South and within a couple of days she underwent her first open-heart surgery at 11 months old.  The surgery went well, but five weeks later Ada developed Chylothorax.

Chylothorax is a type of pleural effusion.  It is when lymphatic fluid called chyle accumulates in the pleural cavity.  It is rare in children, and can cause significant respiratory distress, malnutrition, and immunodeficiency.

Ada remained in the hospital in China for 4 months with the doctors giving her little hope.  In addition to chylothorax the lining of her heart was infected and she had a blood clot, pneumonia, and staph.  In the end, our princess defied the odds and survived again.

Our princess was 2 1/2 years old when we brought her home.

We knew she needed additional surgeries, but we were clueless how to get started.  We contacted Andrea with Little Hearts Medical for advice.  Andrea explained each of Ada's cardiac defects and suggested great resources to help us learn more about Ada's anatomy.  She also encouraged us to reach out to the top ranked cardiac centers.  Her best advice was to seek multiple opinions.

First, we took Ada to a pediatric cardiologist in Birmingham, Alabama.  It was his opinion that Ada's heart could not be repaired, but she would be a candidate for palliative care.  He believed Ada's left ventricle was too small to be effective; therefore, she would have to live with a single ventricle heart.  He explained to us that living with half of a heart equates to living half of a normal life expectancy.

We sought a second opinion in Atlanta, Georgia, but received the same news.  Ada's heart defects could not be repaired, but she would be a candidate for a palliative surgery called the Fontan.  The cardiologist in Atlanta warned us there was a possibility Ada would suffer complications similar to what she experienced in China.

Ada's Fontan surgery was in May of 2015.

The surgery went well, but unfortunately, she developed chylothorax again.  She was prescribed diuretics, Lasix, and a fat free diet to try to treat and prevent the chylous fluid from replenishing itself.  Other than having drainage tubes coming from both sides, Ada seemed to feel fine.

The fat free diet didn't seem to bother her either.

Unfortunately, this conservative approach did not work.

Next, Ada's cardiac team wanted to try a more aggressive approach of complete parenteral nutrition.  We could not deny Ada food and water, so we declined this option.

Eventually, we convinced the team to try a surgical treatment.  They attempted to ligate Ada's thoracic duct.  Unfortunately, they didn't take into consideration the fat free diet Ada had been on for several weeks, which caused her veins to be flat and floppy.  The thoracic duct ligation was unsuccessful.

Needless to say, we were disappointed.  We felt like we weren't making progress and we were losing trust in the cardiologists.  We requested to be transferred back to the surgeons's services.

Within 24 hours of being back under the surgeon's services, Ada had a heart cath that revealed a small restricted ASD, which was causing extremely high pressures within her heart, thus causing the chylous pleural effusion.  She had another open-heart surgery to widen the ASD in an attempt to lower her pressures and dry-up the pleural effucion.  It worked!

Within a week of the second surgery, Ada was home and headed to the mall to shop.

Ada has been such a blessing to our family and has taught us many valuable lessons.

We have learned life is too short to sweat the small stuff.  We have stopped taking ourselves so seriously, and started living life to its fullest!

Stay tuned . . . this fall we will travel to China to bring home another New Day South heart princess.

blog: From A to C

1 comments: said...

Beautiful story!! And I just LOVE that you are heading back for another blessing!

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