Sunday, February 8, 2015

Day 8 - Hope, Benjamin, Evie & Elijah

Seriously Blessed

Seriously (to a large degree or extent) Blessed (enjoying happiness)

It’s the name of our blog. 

It’s the name of our Facebook group.

It’s how we feel about our lives.

It’s the way I feel every day when I wake up and I see these little faces.

My husband and I have been married for 30 years.  We have 14 children.  13 still living.  5 biological and 9 adopted.

We have been blessed to adopt four heart kiddos (one domestically and three from China). 

We started out on our adoption journey by accident.  We’d never talked about adoption.  It just sort of happened.  My husband was doing his a fellowship in neonatology and a baby girl was born with hypoplastic left heart syndrome.  Long story made short, the pre-adoptive parents backed out, mom chose not to treat, and we adopted her.

Hope’s story was amazing.  Fifteen years later, I still stand in awe of all that happened to make her adoption happen.

Twelve years later, when we decided to adopt again, Hope asked us to consider adopting a little boy with a heart defect.

Our decision to say “yes” to her request sent us on the most amazing journey.

We adopted Ben in March of 2012.  Ben was three and a half years old with uncorrected transposition of the great arteries, he had a PDA, ASD, and a VSD.  Ben was very small, very malnourished, and had extremely low platelets. 

In November of 2013, we traveled to Boston for surgery.   Ben, age 5, had surgery and pulmonary banding and did better than anyone expected.  He spent 7 days in the hospital.   They were worried about his pulmonary pressures so they left his VSD open.  Instead of being very blue, with life shortening severe pulmonary hypertension, Ben is now pink and full of energy. His pulmonary hypertension will remain a lifelong issue, but the repair will very significantly slow its progression and greatly extend his life.

This picture says it all.

This little girl was considered inoperable and terminal in China.   When we first met her we were handed a 26 month old, 13 pound, very blue little girl with sats in the 50’s, with the biggest personality you have ever seen.  At her first cardiology appointment we were told she needed something done as soon as possible.  She was living on a trickle of blood flow through her PDA.  The fact that she was still alive was a miracle. 

She had a complication after her first heart catherization and ended up in the PICU.  In October 2013, Evie had her BT shunt surgery which allowed greater flow of blood to her right lung.  A few months later after another cath, we learned the beautiful word “arborization”, which meant that blood was now flowing beautifully to her right lung.  It looked like a tree with all its branches instead of a small trickle. 

We headed to Boston in the spring of 2014 for Evie’s surgery.  She had her cath done and we received the wonderful news that we could skip the second stage, the Glenn, and go straight to the Fontan.  Unfortunately, she became ill over the weekend and we had to postpone her surgery.  October 20, 2014, Evie took us back to Boston for her heart surgery.  Dr. delNido performed the Fontan surgery on her and she did fantastic.

Evie spent 7 days in the hospital.  She avoided the pleural effusions that can sometimes plague children who undergo this surgery.  She came home full of energy and bursting with a love of life. 

In November of 2014, we took our fourth heart warrior to Lucille Packard Children’s Hospital in California for his surgery.  Elijah had been born with TOF, pulmonary atresia, and MAPCAS.  

Dr. Hanley performed Elijah’s unifocalization procedure, an almost 14 hour surgery, and Elijah did amazingly well.  Eli left the hospital after 7 days too.   Eli, who previously had no pulmonary arteries, now had two.  The little boy who was considered inoperable in China now had a future. 

This year has turned out better than we could have ever hoped.  How could you not consider yourself seriously blessed to be a parent to these sweet faces?

We have watched them turn from blue to pink.  We have watched them thrive and grow and learn.

This past year has been one filled with answered prayers!  One might even say it’s been miraculous.

We stepped out in faith on a journey we were scared to death to start, but the blessings and the lessons we have learned are priceless.   We have learned to never take a day for granted and that is a gift beyond measure.  We do not know the numbers of days any of our children will have, only God does, but we have chosen to live life to the fullest and take nothing for granted.   

I’m sure many would call us crazy.  14 kids (8 added in a period of 3 years) plus 6 heart caths, and 4 heart surgeries all over a 14 month period.  It was hectic.  I’m not going to pretend it wasn’t but I have to tell you in all my years on this earth, I have never felt more blessed, more at peace, and more certain that we were doing exactly what God has called us to do.  And that is why on any given day you will hear me say, I am truly, honestly, seriously blessed.


Andrea O. said...

I never tire of your story, Lisa! Thank you for sharing!

katietucker17 said...

Love your story, our daughter with DORV and dextoxardia has her first heart cath tomorrow morning!

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