Tuesday, February 11, 2014

Day 11 - Teresa Bartlinski

Teresa "Fang Fang"  Bartlinski 
 Adopted- 7-10-2010
 "Rode her Princess Bike into Heaven"- 7-1-2013   

I was not sure on how to start this post.   I wasn't sure I would even be able to write it.  Since last years post on 28 Days Of Hearts a lot has changed in our lives.   I wish I could say the miracle we dreamed about ,  Teresa receiving her new heart and living happily ever after happened. , but it didn't.

Teresa waited almost one year to receive her "new Heart".  On June 17th. 2013, our lives would change forever.

We were sitting on the beach watching the girls make drippy castles in the sand.  Ed and I were talking about how nice it was to get away for a few days and relax.  Surely we would  not get "the call" while we were away.  We never traveled out of the two hour radius to CHOP.  This time we were a little over three hours .  We notified the TEAM at CHOP and told them our plans.   They assured us it would be O.K. and would give us extra time should we need to come in.

Shortly after lunch my cell phone rang.  It was CHOP on the caller ID.   Ed and I both looked at each other in shock.  On the phone was the transplant nurse telling us there  was "a good match , come right away, not alot of time , hurry". 
We gathered all the girls off the beach  covered in sand.  I put Teresa in the shower to try and remove the mounds of sand in her hair.  Everything was a blur as if time was moving in slow motion.

We sat down and took a deep breath and let the girls all say good bye to Teresa.

As Ed and I drove to Philadelphia , Teresa sat in her car seat watching her favorite princess movie totally unaware of the scope of the events about  to happen.  We arrived at the hospital and were rushed up to the sixth floor to meet the team.  Teresa was quickly prepared for surgery.  Most of the time you sit and wait but not this time .  Everything was moving really fast.   Our son Alex drove up from Baltimore to be with us.  Shortly after he arrived it was a GO.

We all walked Teresa down the hall to the OR.  She was happy and excited to get her new heart.  She wanted to have her ears pierced and ride her princess bike without having to wear oxygen.  She was so excited.  As we said our last goodbyes, I told her it was her turn to be "the boss".  She gave me the thumbs up and giggled as she was wheeled into the OR.  I yelled to her "I love You" and she yelled back as the doors shut "I Love You More".  This was the last time we would ever hear her sweet little voice.  These were her last words.   

Shortly after the transplant was complete ,Teresa began to struggle.  She went into cardiac arrest and received CPR for thirty minutes before being put on ECMO. The Doctors were unsure if she suffered brain damage from the lack of Oxygen but Teresa proved them wrong as she came out of the heavy sedation .  She would give us the thumbs up as we asked her questions and try to smile and move her head.  She was fighting  to live and was not going to give up.  

A few days later she was not improving so it was determined to go back to surgery and try to repair the one side of the new heart that was not functioning.  The hope was she would come out of surgery off of ECMO.  This was not to be.  The surgery was unsuccessful and Teresa's new heart was still struggling.  
Teresa continued to have one emergency after another, from the ECMO canula cracking causing her to bleed everywhere as Ed and I stood there in disbelief, totally helpless.   The Heart Cath. showing no improvement , the right side of her heart would not beat, to being asked every day to just give up.   But how do you give up?  Teresa was fighting to live , she was not giving up.  She was still defying all the odds of living even with her "Heroes Heart"  barely beating.
 Daily x-rays, ultra sounds, heart caths.,surgeries , emergencies, CPR, ECMO for 14 days and through it all Teresa continued to smile, give us the thumbs up shake her head yes when we talked about all she would do when she went home with her new heart, she never gave up.
For 14 days Teresa united the world in prayer.  Her prayer warriors from all over the world  united in prayer asking God for "Teresa's Miracle".  People from all different faiths prayed.   People who had not prayed in years or who had lost their faith emailed me telling how Teresa had brought them back to God.  People were considering adoption because of Teresa's Story,  even orphans like Teresa with CHD.  Lives were being changed , the Miracle was happening.  But not for Teresa... for others.

As I sat by Teresa's bed for 14 days holding her hand , playing her favorite princess songs, talking to her about happy times and things to come ,  I saw the miracles happening for others and knew deep in my heart that this was Gods Will , He was going to take her home  to be with Him and the Miracle would be all the lives that were touched and brought back to God because of her.

I pleaded with God not to take her, promising everything to just let her stay in my arms.  I felt like Jesus's mother Mary as she watched Jesus suffering on the cross and holding his lifeless body.

On July 1, 2013 Teresa was taken into surgery one last time .  She was to receive the double Berlin heart.  This would hopefully give her some time to be re listed for another heart.

As we sat and prayed for a "Miracle" and for God to hear our prayer the team of Doctors all dressed in their white surgical scrubs came into Teresa's room where we had been waiting.  We knew at once what this meant...   they had done all that they could... they tried everything... but they could not get The Berlin Heart to function  against the tremendously high pressure in Teresa's lungs.   Even an iron heart could not withstand that kind of work load.

Our wish always was that Teresa would know the love of having her own family and we would love her unconditionally for however long God would share her with us and she would not die alone an orphan. 

We told her surgeon we did not want her to die in the OR alone.  She was put back on ECMO along with the Berlin heart and her Heroes Heart  struggling to keep her alive long enough to reach her room so she could be with us as she went into Jesus arms.

Never in my life could I have imagined the tremendous amount of strength needed to hold my daughter as she died. But God was right there with us holding us up.  Slowly everything was turned off and Teresa went peacefully into Jesus arms.  
We told her how brave she was and how much we loved her.  We told her how beautiful Heaven was and that it was filled with everything she  loved... Princess clouds, sunsets, rainbows , blue birds of happiness, princess gowns, princess shoes, Tiaras, pink lipstick,. 
We told her "Her Jesus", that she loved so much,  was waiting for her to ride her princess bike with him. Before she took her last breath her ears were pieced.  They were beautiful!

We held her for hours not wanting to leave.   We bathed her, made molds of her hands and took lockets of her hair tied in a pink bow. 

I now know how the Blessed Mother felt holding Jesus lifeless body.  Teresa lived for 6 1/2 years with 1/2 a heart and when she died she took half of our hearts with her.

It has now been 7 months that we have had to live without Teresa.  We have tried to adjust to a "New Normal" .  We have realized that there will never be a " Normal" again.   We are not normal.  Teresa changed us for the better.  She came into our lives for a brief second in time for a purpose.  When God asked us to take a leap of faith and trust in Him , we did. Not knowing where God was leading us or the tremendous journey that only HE could take us on.  We trusted Him completely! Adoption has changed our lives. Teresa's Story has changed thousands of lives around the world. She continues to touch lives today from Heaven.  

This past September Ed and I returned to China to work out the details on opening a Heart Home in Beijing China for orphans born with Severe Heart Disease like Teresa.  We partnered with Little Hearts Medical and Little Flower.  The Home will be called "Love You More" Heart Home in memory of Teresa. If you  would like to receive more information  or make a donation in memory of a loved one and have a room named after your loved one please contact me. (mykidsmom1986@yahoo.com)

Thank you Teresa for allowing me to be your Mother.  It was an honor and a privilege. 


Drea said...

I have thought of you and Teresa so often during these past months, and I believe she is a guardian angel to all of her heart sisters and brothers. We will always hold her close.

fornsc3 said...

Beautiful post Ann! I sobbed over every last one of your precious words. God does work out everything for His good. Teresa's life impacted and will continue to impact His Kingdom. His grace abounds in deepest waters.

KJS said...

Teresa and your family are never far from my thoughts, even 7 months later. Her life greatly impacted mine even though we never met. Thank you Ann for sharing Teresa and her story with all of us.

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