Saturday, February 28, 2015

Day 28 - Teresa Bartlinski

When we set out on our journey to adopt Teresa, we knew how fragile her heart was.  We said from the first day we would love her for however long God would share her with us on earth.  We didn't know then that God would only share her with us for 3 short years.

Our family has 9 children, 4 biological children and 5 adopted daughters from China.  All of our children have been gifts from God, but  Teresa was different... Not only was  she a gift but she was an old soul. She had the ability to see, feel and know things that the rest of the world would just pass on by, never really noticing.

Teresa's heart condition  was so complicated her only hope was a heart transplant.  Her gift of life came in June 2013.  For two weeks she struggled.  She endured cardiac arrest, CPR, three open heart surgeries in two weeks, catherizations, ECHMO and trauma from the ECHMO tube breaking after a tech spilled EKG remover on the tubing.

For two weeks she never gave up. She would wake from the heavy sedation to give us a thumbs up.  Letting us know she was O.K. .
Finally, on July 1, 2013,  with her new "Hero's" heart failing, her last hope was a double artificial heart.
After hours of waiting and praying, the entire team of surgeons came into her room to tell us the Berlin Heart would not work.  It was time to let her go.
It was our wish that she would not die alone so the team brought her back to her room where she was surrounded by our family.
We held her and whispered in her ear to run to Jesus.
We told her how much we loved her and it was O.K..

God gave us the greatest gift of all,  we were not there when she was born but we were there for three years filled with unconditional love and happiness, and we were there when she took her last breath.

The Lord gives and the Lord takes away, Blessed be the name of the Lord. For God is good all of  the time.

It has now been 1 1/2 years since Teresa went to Heaven.  She continues to touch our lives everyday.

We try to live each day like she did, happy all the time and grateful for EVERYTHING.  We are changed for the better.  Our hearts are deeply broken because Teresa took a huge chunk of our  hearts with her to heaven.  But she reminds us everyday  how to live and to never give up.

In Teresa's memory we are doing many things to help save the lives of other orphans.
We have partnered with Little Hearts Medical an organization dedicated to serving impoverished and orphaned children in China born with congenital heart disease through the sharing of knowledge between U.S. and Chinese cardiologists and surgeons.  We are also members of the Board.  

We hope to open a "Heart Home" in Beijing in Teresa's memory and call it , "Love You More" Heart Home.  These were Teresa's last words to us.

We are also adopting again.

We love you more Teresa!

Friday, February 27, 2015

Day 27 - Bella Xin KaLare

Born October 28, 2010/Abandoned December 18, 2010/Found (by us) June 10, 2012/History CHD post/op (ASD & PS).Tumor removed from her right eye lid, congenital cataracts and Coloboma,of both eyes. /Adopted May 28, 2013/ Home forever June 6, 2013


To read from the beginning of Bella's journey read here 2013 and 2014.

Another 12 months have brought more happiness, tears, fights, joys, set backs and over-comings.

Bella is "amazing" to still have such a silliness in her spirit and go through still so many uncomfortable things.

We went in for a routine eye check up and found out that she had went blind in her other eye. We were not expecting this for much later. But we always try to roll with whatever comes. the first repair went so great we were very positive about regaining sight in this eye as well!!

Its time for surgery per-op day and a little fun play with big brother before morning.

The surgery went well and the Dr felt that he was able to have a successful repair and all we had to do was wait and watched how it healed.

It felt like it took so much longer. Unfortunately there were some  mis-communication about Bella's history with the nurses in recovery and they didn't come get us until after they woke her up. I am not sure how long she had been awake but by the time we got to her she was frantic. The experience for me was so much different from the eye surgery last summer. She didn't want me or seemed not to even know that she needed me for comfort. This time she seemed to need nothing but me.  She was so upset and not until the next few days at home did we understand just how much it did upset her.

We had to work through a major set back with her feeling that we were abandoning her, walking outside with the door open to take trash out, walking our of the room at home, getting out of the car first. She would have a total melt down and it took about three months of re-building for her to over come again. But we are blessed with her and the power of what love can always continue to do.

November!!! Orphan Sunday! We continue to allow Bella to be used to show others the reality of "one less' in this world and to bring hope and encouragement to them to go forward in any way they are lead. 

Bella's repaired heart is still holding it's own. We still continue to go for check ups every 6 months for echos along with that the specialist listens to the sounds of the two leakages she has. They measure and make sure that the damage it causes is not causing her heart to enlarge but we do know with the volume of the leaks that one day will come that we get a different check up report. Then we will move ahead in faith and we will do whatever it takes to help her led a full life ahead of her. 

She is for sure a typical CHD child and she has NO limits and can do anything and will overcome all. They all are amazing children and I thinking we as parents grow and overcome ourselves just as much because she is our daughter! 

Bella is a beautiful 4 year old now that loves hot wheel cars and princess crowns. She loves her weekly therapy and is so excited about the idea of going to school next year. 

(I pray it stays that way) 

She is obsessed right now with beads hanging from her bows!!

AND she holds my face everyday and tells me " mommy, your so beautiful! Bella, I'm a princess and your the queen. Your my best friend and you'll always be in my brave heart! " 
Yes baby girl and you will always have mommy's.

Thursday, February 26, 2015

Day 26 - Seth, Nehemiah, Esther & Timothy Risley

God in his kindness has placed four heart children in our home. The reality of living and loving a little person who potentially has a shortened lifespan really flies in the face of our fierce western idea of strength and independence. May I push it even further? It’s a wrecking ball to our insulated, rather benign faith. It’s an opportunity to die in order to really live. As believers we should be in a perpetual place of tension/seeming contradiction as we grow in grace. This is not a comfortable way to live, neither does it make sense. Ahem…this is a crazy way to live! For our family the past three years has brought us to an increased intensity in living out these seeming contradictions. What does it mean for us, the Risley family, to follow Christ? For us, it meant six kiddos from China in three years. There is nothing God likes better than redeeming, restoring, and making new his creatures who are broken, lost and without hope.

It is not unusual to have conversations (always with several interruptions) in our house trying to figure out how truth and life connect in the hard stuff. Our 15 year old has shared how it weighs on him that he will probably outlive one of his siblings. Speaking truth into his reality is holy ground. We can love recklessly because we have been loved by the greatest Risktaker of all time.

“We (believers, the church) are a colony of heaven in a country of death.” Peterson

That says it perfectly. Our Seth, adopted in 2012 from Fujian, catapulted us into this tense realm of ‘the now and not yet’. The finite words of ‘the now’ are truncus arteriosus, large VSD, severe pulmonary hypertension, Eisenmenger’s syndrome, inoperable; I am so sorry, there is nothing we can do.’ We are several years out from that grenade landing in our laps. Seth is holding steady. He is no worse and he is no better. His sats stay in the low 80’s. He is as bubbly as ever! And ‘the not yet’…he knows and loves Jesus and one day will worship him without shortness of breath.

God brought us Nehemiah in October of 2013 from Henan. We sat in the same recovery room area at Boston Children’s Hospital and waited for the results of his cath. The finite ‘now’ words then were complete atrio-ventricular canal defect. A few months later with open heart surgery and a 5 day hospital stay, Nehemiah was accorded a complete repair. He is barreling through life with frequent stops to kiss and hug all those he loves. We absolutely adore him. The’ now and the not yet’.. God is faithful and God is good.

December 23, 2014 God clearly gives us Esther and Timothy both from Henan. Their ‘now’ terms are plenteous…single ventricle, single atrium, DORV, TGA, probable heterotaxy syndrome, pulmonary atresia, etc. Both have had palliative procedures done in China. Esther had the Glenn procedure done in Shanghai and Timothy, pulmonary banding in Beijing. We are smack dab in the thick of the ‘not yet’.

Tomorrow we will sit in Boston Children’s waiting area and learn a few more bits and pieces regarding their unique anatomical make ups. As the scientific jargon tumbles from doctors’ mouths tomorrow, in the deep quiet of my heart, ‘it is well.’ We trust in his goodness and his love. He is more than enough!

Wednesday, February 25, 2015

Day 25 - Joshua, Joy & Rebekah Peterson

Our family has adopted three beautiful older children who were waiting in China with heart defects.

Joshua came home at age 8 in 2011 – now age 11.

 Joy arrived at 6 years old in 2012 – now age 8 

 And Rebekah Grace, age six, joined our family a few weeks ago in January 2015.

None of them received any intervention in China other than a few diagnostic echoes and we were given minimal medical information prior to adoption.

Before we committed to each of our heart kids, our agency required that we ask a cardiologist to review all the information on their congenital heart defects. We met with the cardiologist who would be initially diagnosing and treating our children upon our return from China. This doctor took over an hour each time and explained the defects complete with pictures drawn up side down as he detailed what we might be facing after the adoptions. He laid out the best and worst prognosis in a way that helped us prepare to make the best decisions possible.

This year, after surviving a heart transplant with Joshua and being told that Joy was medically stable with her pulmonary hypertension and PDA, we committed to Rebekah Grace who has a large VSD and severe pulmonary hypertension. Each defect is so different with a seemingly infinite amount of variables, and although we understand a little bit more of the language, there is still a learning curve with each new diagnosis.

Rebekah had her first heart catheterization a few weeks ago which showed that her lung bed was naturally protected by her body and in spite of her presentation of severe pulmonary hypertension, she will be a candidate for a closure of her VSD. This will require open heart surgery in the near future and give her a near normal anatomy and life span.

Joy was especially thrilled to gain a sister from China. She takes her job of showing Rebekah the ropes quite seriously.

Joshua was able to take his family on a Make A Wish trip which had been postponed because of his heart transplant. During the trip about one year post transplant, we were stunned at how much he was able to do. His energy level is through the roof!

Joshua is loving life and living large these days. He is still on nine medications and in therapy but not much slows this kid down.

Some days, I wonder if it isn’t me who got the heart transplant. My heart has been changed forever by these three survivors who waited years with heart disease that would have been repaired or addressed within the first few months of life in the United States. Joshua, Joy, and Rebekah are true heart warriors and our family wouldn’t be the same without them!

Tuesday, February 24, 2015

Day 24 - Rosie, Carlie & Maisey

 Hello!  I am really excited to share our story with you.  This post is going to be a little bit different as I am the sister.  I am sixteen years old (a heart baby myself) and am blessed to have five sisters, three of which are heart babies.  My three youngest sisters came through the amazing gift of adoption.  I tried to keep this short, but there’s just SO MUCH to tell…

We accidentally stumbled into the world of international adoption.  We had tried domestic, but every ‘match’ we got never actually went through.  So we talked to friends and were told about many different programs.  Since both of my parents weren't going to be able to travel, due to one of my sisters medical needs, China seemed like the best option.  In August of 2013, we saw her face.  She badly needed a family.  She was dying in an orphanage in China.  Her heart needed help, and it needed it fast.  She was 5 years and 3 months old.  She had been diagnosed in China with tri-cuspid atresia, but had not received any surgical intervention or treatments.  We were told not to look at the pictures because we would fall in love, and then we would learn how bad her heart was and say no.  Well that didn't stop us! We read her story, and of course looked at her pictures, and knew she was meant to be ours.

We were quickly in the midst of a mountain of paper work.  It was a race against time as the doctors here had information from two old echos, enough to make them nervous, but not enough to answer many questions.  We were told every week that passed made her chances for surgery slimmer.  Picking a name proved to be challenging, but fun.  We went through so many and then selected Rose.  After all, she was abandoned in a flower market.  Her name fit her absolutely perfect.  Six months later, on February 22, 2014, I had the amazing opportunity to travel to China with my mom and older sister.  Two days later we met Rosie in a crowed Guangzhou civil affairs office.  That day was like no other.  One year ago, February 24, 2014, I met Rosie and fell in love with her and her spunky personality.

Rosie cried once when we left the civil affairs office, but after that was all smiles.  She quickly became my buddy.  And I would do pretty much anything to make her happy. : )  Due to her heart, her fingers were extremely blue {hence the nickname ‘Blueberry’ given by a nurse at the hospital} and she would get tired pretty easily.  But she never let her heart stop her.  When she got tired and out of breath, she would just ‘squat’.  Literally she would squat down in a ball with her feet flat on the floor and just stay there for a few minutes {this helped to force blood into her lungs}.  Then she would continue on with her cuteness and craziness!  At 5 ¾ years old, she was extremely small, like the size of a 2-3 year old {weighed 25 pounds} and she wore 2T clothing!  So tiny, but SO much sweetness!

(Most days in our house were FUN HAPPY DAYS!)

Right after we arrived home from China, Rosie spent a week in the hospital.  Combined with jet-lag, and a cold, she was a mess.  But she quickly recovered and was just as spunky as ever.  She had her first echo the moment she entered the hospital, and at first glance, they deemed her heart inoperable.  We were crushed.  Though we knew that could be the case, we had been praying for miracles.  Then fifteen minutes after much scrambling with the echo, and listening by multiple cardiologists, we were told that she WAS operable.  Wow! Our family celebrated the news that the doctors would be able to help Rosie’s heart and lungs.

After she came home from that first hospitalization, we spent the best weeks of our lives together.  It was so beautiful to see her personality blossom each day.  Anything I would do, Rosie would do.  Her nickname became ‘Peanut Butter’ and she was also known as ‘Monkey’.  Rosie learned the majority of English in about two weeks.  It was pretty amazing!  The first day we met her, she would respond to her name ‘Rosie’ and by the time we got home, she would yell at us if anyone mentioned her Chinese name.  Clearly she had decided who she was!  She also decided that instead of ‘I love you’, she would say ‘I beep you.’  And she thought that my name sounded much better as ‘ALLAY!!!!!’ rather than just ‘Allie’.  I tend to agree.

She got to go swimming once and LOVED it.  She would've showered all day if she could, this girl loved water!

Sunglasses were her thing, I think she had sunglasses on at least once per day.

With two older sisters who are both gymnasts, Rosie ADORED ‘nastics as she called it.  Marie {my older sister} and I got out our old leotards and she was all over it.  Many days she spent hours running around the house in her ‘nastics suit’.

After careful planning, Rosie’s surgery was scheduled for April 25.  The doctors had agreed that doing both the Glenn and the Fontan at the same time would be the best plan.  We went along with it, not realizing that a second opinion might have been better.  Her lungs were already damaged and it was border line whether or not the doctors would be able to control her pulmonary hypertension.  We needed to get the surgery done as soon as possible because her lungs would only continue to get worse.  The doctors told us not to travel and to stay quiet to minimize germs for Rosie.  So many people wanted to come meet Rosie, but we said wait until after her surgery.  Little did we know the challenges that were ahead.

Rosie underwent her surgery on Friday, April 25.  It was a 13 hour surgery and the first 8 hours of recovery were rough.  The next morning she was starting to stabilize and they took her off the vent because vents and pulmonary hypertension don’t always go together well.  I was ecstatic.  My little Peanut Butter was doing well.  She would get to live life with us and hopefully for a long time.  That night she began to have complications.  And the next morning she was back on the vent.  Then they decided to reopen her chest.  It released a huge amount of pressure, but it wasn’t enough. She had three surgeries over the next 12 hours and finally after coding, she had to be put on ECMO.     
The morning of April 28, 2014, it was confirmed that she had Klebsiella sepsis along with significant complications from her pulmonary hypertenion.  At first it was a relief, because we knew what was causing the scary things that had happened.  But the relief turned to fear as we realized just how seriously sick she was.  The infection settled in her lungs and severely damaged them even more.  Throughout the next weeks my little Rose fought and fought.  She proved to be quite the warrior and we continued to remain hopeful that her lungs would heal.  Visiting the hospital day after day, it was hard to see my Peanut Butter so sick and without her usual smile and laugh.  For three weeks Rosie fought and fought.  She had sixteen open heart surgeries over 4 weeks, one of them a 20 hour surgery to remove the Glenn and Fontan in hopes that her body might respond to its original anatomy, and to remove the artificial parts she had received that were now colonized with bacteria.

May 15th was a day I will never forget.  It was a day that my mom called and said that the doctors didn’t think Rosie would make it.  In that moment it was as if someone sucked all the air out my lungs.  Marie and I decided that we wanted to be with Rosie every second we could.  We went up to the hospital that afternoon and hung out with Rosie.  Anytime anyone would say “I beep you” to her, she would blink her eyes and wiggle her toes and, my favorite, twitch her perfect little nose.  Sedation couldn’t keep this girl down!

The next day {16th} we had a birthday party for Rosie.  Her birthday wasn’t for 5 days, but we weren’t sure if she would make it.  And I was determined that we were going to have a party and that it was going to be fun.  We decorated her room and put pictures up everywhere so the doctors and nurses could see the happy and healthy Rosie.  We had a cake and candles and celebrated Rosie’s birthday for the first time in her life.  It was a mixture of joy and sorrow.  She was surrounded by family and so much love.

That day, she had the ‘BIG TEST’.  They were going to test her heart/lungs off the bypass.  All of the doctors {except for one} had told us that there was no way Rosie’s heart or lungs would work.  Clearly they don’t believe in miracles, but we do!   At 3pm we began the process of stopping ECMO.  I wish I had a picture of the room.  There were many nurses and doctors around Rosie.  Our whole family and some awesome friends were there and cheering Rosie on.  I had cried so many times throughout the day no more tears came but a sense of peace came over me {only from God}.  We would say things like "come on Rosie you can do it!".  And we knew that she could.  Because miracles happen every day!

That’s just what Rosie proved.  She fought.  She proved that her heart could do it.  That she was strong enough.  Her heart worked on its own. Unfortunately, her lung performance was non-existent.  I have never seen a hospital room clear out so quickly.  {And I’ve been in a lot of hospital rooms in my life  : )} All the doctors were shocked. They had guaranteed failure.  I was just sitting there thanking God, for all he had done.  I had truly witnessed a miracle.  Peace came about me.  Reminding me that He is ALWAYS in control. 

On Monday May 19, 2014, I had sinus surgery.  That was not fun, but totally worth it.  I was feeling good enough the next day to spend the whole day with Rosie {the advantage of being homeschooled}.  It was her birthday and we had another party.  I wanted to celebrate every moment I got with Rosie.  I didn’t know how long I would have.  After the doctors put it off for two days, on Wednesday, May 21, 2014, it was decided it was time to try to switch Rosie to the lung only ECMO.   The doctors said it could take months for her lungs to begin to fight the infection.  This was the last thing they could do.  And we had promised that we would do ANYTHING to fight for her.  But by this point her heart wasn’t strong enough.  God needed one more angel.  They told us to go back and be with her.  It was a moment that will be etched in my heart forever.  On May 21st, 2014, she made her way to Jesus’ arms.  We weren’t there for her first breath or heartbeat, but we were there for her last.  She didn’t die an orphan, she didn’t die alone, she died a treasured sister and daughter. She was so LOVED.

Rose Iva Xiaoqian
Born ~ May 20, 2008, Zhongshan City, China
Family Day ~February 24, 2014
Forever our Angel ~May 21, 2014

I think back to that day and remember being with her.  I studied her eyes.  The beautiful brown eyes, who weeks before had been so alive and so full of joy.  I wanted to see her smile one more time. I wanted to hear her voice and her crazy laugh.  I wanted to kiss her nose over and over again. I wanted to see the adorable ‘nastics that she would do in the living room.  I wanted to see her swimming and giggling and dancing.  I wanted to have my Rosie back.   And as I sobbed over her that day, I wonder how God could possibly make ‘good’ out of this.  Oh, if only I had known how much beauty would follow such pain in the next few months.

 {You can see Rosie’s memorial video here: }

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them. Romans 8:28

Rosie’s life has changed me in so many ways.  It has opened my eyes to see things differently.  The memories I have of us together are beautiful.  We had so much fun.  If I had known it would only be for a couple months I still would say “YES”.  I would do it ten more times.  Twenty more times.  Thirty more times.  Because the joy Rosie brought me cannot compare to the pain I feel.  Is it hard?  Yes, many days are full of tears and moments when I wish she was by my side.  But then I think about how honored I am to be her sister.  That God picked me to be her best friend.  That I got to spend some of the best months of my life with her.  She was a gift.  A beautiful Angel from Heaven.

God has done so much in this past year.  At the same time Rosie became an angel, we received the file of a little girl.  Adopting again was on our hearts, but we weren’t actually looking at that point. {ok, who am I fooling… I’m always checking out the waiting kids lists  : ) }  We checked out the file and saw that she was from the SAME ORPHANAGE AS ROSIE.  Wow!  It was so amazing to see God’s hand in action once again.  She was six years old and her file said that she had two large VSD’s.  We committed to her and then a few weeks later, another file came our way.  She was eight and had severe CHD, and like Rosie had received no interventions.  Then we saw it again, she was from the SAME ORPHANAGE AS ROSIE.  Wow again!  Two girls both with CHD and from the same orphanage as Rosie’s.  God’s fingerprints were all over it!  We once again began the paper chase.  We couldn’t wait to bring home Carlie {8} and Maisey {6}.

We met Carlie and Maisey on December 22, 2014.  What a day that was!  It was beautiful, life changing, and extremely heart breaking at the same time.  We found out that Carlie had been living in a local hospital bed for the past four years.  No one had ever told us this and we began to see just how much it had affected her.  She could not eat anything, she was allowed out of bed for ONE HOUR A DAY, and she was on oxygen for thirty minutes a day {so ridiculous}.  She is eight years old and weighs only 26 pounds and is almost 40 inches tall.  Crazy!  Day after day we see more and more of her lovely personality.  She is so loving and sweet!

After we came home, Carlie spent a week in the hospital while the doctors did a whole check up of what was going on in her little body.  Carlie has heterotaxy, which for her presents with all her organs on the opposite side of her body and flipped around.  Her heart is right in the center and she has a complete av canal defect along with pulmonary atresia.  Her O2 stats are {with full time oxygen} around 65 when resting and go down to the 50s with any kind of activity.  Her fingers are SO blue!  We found out that she doesn’t have pulmonary hypertension because the amount of blood flow through her “God shunt” to her lungs is so small.  Which is truly the miracle we had been praying for!

Maisey on the other hand has a VSD and an ASD that will require surgery, but the doctors say it can wait.  Maisey is hilarious and keeps us all on our toes with her fiery personality.  She has tons of sass and loves when she is the center of attention!

It’s been so fun to watch more and more of the girls’ personalities unfold.  They are blossoming and doing wonderful.  I’m so amazed!  Carlie is learning so much and so fast, clearly God has big things in store for this girl!  Maisey adores sign language and communicates mostly through that and grunting.  It’s pretty funny! 

In early April, we will be traveling to Boston to begin the first of Carlie’s heart surgeries.  The current plan is first a shunt and a possibly a Glenn at the same time, depending on how her heart looks once they get in there.  To be honest, I am nervous.  But at the same time, I am excited that Carlie will hopefully have more energy and be oxygen free!  We would so appreciate your prayers for this precious girl.  I will be posting updates on my blog as we begin our next surgical journey.

I kind of can’t believe all that has happened in a year.  This time last year I was sitting in a civil affairs office in China about to meet my newest sister.  So much has changed since then!  Through the great joy and deep sorrow, I have learned just what it means to live by faith.  If you are thinking about adoption, DO IT!  Don’t be afraid to step out and do something you thought you would never do.  It will CHANGE your life for the better!  I have been changed by my sisters.  I’m hoping to one day live in China and help other orphans with CHD. Because orphans deserve so much and are so treasured in the eyes of God.
Rosie changed me.  She opened my eyes to see the need of orphans.  And to do something about it.
Thank you for taking the time to read our story, it truly means so much to me that others have been touched by Rosie’s story.  I am overwhelmingly BLESSED by all God has done {and is doing} in my life.


{better known as ALLAY!!!!!!}

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