Bypass

At 11:45pm.,   Teresa went on bypass.  Please pray for her.  She had a lot of scar tissue that they had to go through.   Teressa's HERO'S heart looks very good and is a really good match.

Please share and ask others to pray for Teresa's miracle.  We need for her lungs to accept the new heart.  Her pulmonary pressure is very high.

Thank you all , we are so grateful for lifting Teresa up in prayer!

"I Love You More"

The first update is Teresa is stable and waiting for the heart.

Her nurse came out a little while ago and told us Teresa's last words as the OR door was shutting'"  Tell Mommy I love her more".

A Hero

Teresa went back to receive her new heart around 8;30 this evening.

Please pray for her and the child who is her Hero tonight. The family who gave Teresa the gift of life!
This child will always be a part of our life and we will cherish this unbelievable gift forever!

I will keep Pray for Teresa B Facebook group updated as we receive updates.  Not sure how often I can get to the computer for updates but Laura and Eddy will update  OurPlaceCalledHome blog .

The total transplant should take 6 hours.  Without any complications she should be in her room around 2;30am.

                                                  On our way to Chop.

                                              Playing with Meridith ( child life) as we wait.

                                                  Talking to Paul and Meg and Grace on skype and dressed as a Princess to receive her new heart.

                                                             Loving Alex.

Please pray for a miracle because Teresa is VERY high risk.

New Heart at 8pm

Everything is moving very quickly in Philadelphia. So far the heart looks like a perfect match and the procedure is scheduled to start at 8pm!

Please keep praying for Teresa!

- Laura and Eddy

Teresa Has A Heart

Ann and Ed got a call this afternoon and were told that Teresa has a heart! They are on their way to CHOP now. Please pray for Teresa!!

We will post updates to the blog and the Pray for Teresa B Facebook group as we get them.

- Laura and Eddy

Old Soul

Teresa said something today  that reminded me of what an old soul she really is.  She wanted to know when I was a little girl if Jesus gave me a new heart.    I asked her why and she said, because  Jesus was  going to give her a new heart and then her heart would be just like mine.

 Most people see  Teresa as just a little six year old girl that LOVES to be a princess.  She loves to play dress up, wear make up, wear high heeled shoes and play pretend all day long.  She goes to bed as a princess and wakes up a princess.  She has tea party's, watches all the princess movies , knows every Disney princess by name along with their Princes'.   Whenever she makes a wish it is always to be a real princess.   Being a princess and living in this make believe world is how Teresa escapes from reality.  Her reality  of a feeding tube, wearing oxygen, difficulty breathing, tiring easily, having  half a heart that is always beating too fast, too slow , skipping beats or beating so hard I can feel it through her chest as I hold her . 
Occasionally people see a little girl who when she is too tired to keep up with her sisters has a major melt down .  Or  when her very strong will to do things her way are not met , well here comes another melt down.
But there is another side to Teresa . One not too many people have seen.  One she keeps for those that look deeper.   She is  very sensitive and can pick up on others feelings.  She loves Jesus and talks about what heaven is like a lot.   She loves to  give hugs. She will give almost everyone a hug. Occasionally she will give someone a hug that just happens to be sitting by us in church or someone that she does not know too well. When I ask her why she did that , she always says because Jesus said to hug them.  This side of Teresa is very special.

Jenny Bowen saw this side of Teresa  in China in  Half the Sky Home,  she called  Teresa magical.  A few volunteers at the  Half the Sky home have written to me telling what a special little girl Teresa was and how they were drawn to her.  People from all over the world have emailed or written to me to say how they have seen something in her that has inspired them or given them hope.

Teresa also loves to be rocked.   This is usually when she shares her heart with me.  She talks about China and when she lived there.  Or about family and how she loves her family.  She talks about flowers and how in heaven you can pick all the flowers you want and not get into trouble.  She talks about the different colors the birds are and what her favorite color is.  How Gemma loves all the colors so her favorite color is the rainbow.  She also will sometimes say something that makes me think ... where did that come from?   But I know... at these times I feel like she is the one rocking me.

She never has asked "Why me?"  or why she has a broken heart or a little arm.  She always has the answer that God is going to fix her heart and fix her arm. 
I call Teresa my little old Soul. (A spiritual person whom is wise  beyond their years; people of strong emotional stability. Basically, someone whom has more understanding of the world around them.)


 “A heart is not judged by how much you love; but by how much you are loved by others”
― L. Frank Baum, The Wonderful Wizard of Oz

Teresa has been loved by so many around the world, please continue to pray for her .

 
 

Super Girl

Teresa had a good check up today at CHOP.
  Her blood work was about the same from last month and her heart  function was the same.   The only thing that was down a little were the results from her 6 minute stress test.  She could not walk as long as last month and her oxygen dropped to 39 during the test but she recovered to 54 after resting  (  O2 levels for a healthy person are close to 100. If you or I had an O2 level of 39 we would most likely be unconscious ) , but not little Miss T.  Her body has compensated for living with  such very low oxygen levels.   She has the will of a Super Hero  to go on and does not let the little tiny inconvenience of low O2 levels stop her.  

She had another fun time giving the NP's  manicures and all her favorite Doctors lots of hugs. Teresa LOVES to hug people. 

As far as Teresa's transplant - she is still listed as status 1A and has been waiting now for 11 months for her gift of  life.  Her transplant nurse shared with us that in the past 6 months there have been fewer transplant offers than in the past several years.  She also said that because of Teresa's weight , these children usually wait the longest for their precious gift of life.
As Teresa  continues to wait we are so thankful to God that she is stable and able to enjoy every minute of life.  She wakes up every morning giving us all huge hugs and kisses with the sweetest little "Good Morning". The best things in life are free and could very easily go unappreciated until you realize they could all be gone in a heart beat.

Little Miss Budha Belly (aka, Gemma Rose, is lovingly called this because of her big belly from her love of food but also because she is always smiling like a happy Budha ), Unfortunately did not have such a great day today with her blood transfusion.  Her hemoglobin was very low and now she will have to return in three weeks for her next blood transfusion. ( we were trying to stretch to 4 weeks to help with her iron overload).  I could tell by her energy level and her color this past week that her levels were low.  But I was praying they would be high enough to make it another 4 weeks in between transfusions.

Loving every minute with all of our treasures ...Believe In Miracles ...They are all around us ,we just have to see with our hearts!

Hearts

Look what appears nightly on the ceiling of our bedroom.

Teresa has always slept in the corner of our bedroom in her bed .   Because of all  her medical equipment (pulse ox monitoring her oxygen levels , NG tube with pole and pump for nightly feedings and her oxygen concentrator machine ) it was too much having her share a room with the other girls because of the constant alarms and beeps all night long .  It is also much easier for me to check on her at night to make sure she is not having difficulty breathing or if she becomes tangled in her many cords.

In the corner of our room we have one little night light that plugs into the wall , nothing fancy .   This is what appears every night right over top of Teresa's bed .  Nothing appears any where else in the room . Just over top of Teresa .

A Heart !

 

 

 

 

          

International Children's Day / Half The Sky

As many of you  know , Half The Sky was the orphanage that Teresa lived in for the first three years of her life in China .  Half The Sky was founded by Jenny Bowen to provide special medical care to medically fragile orphans in  China.  Teresa was known as Liu Fang ( Fang Fang ) and received life saving medical care at the Half The Sky orphanage.    Without their love and medical care Teresa would not have survived.   We are forever grateful to Half The Sky for changing Teresa's Life Story and giving her hope for a brighter future.

China celebrates International Children's Day on June 1st. . 
Childrens' Day is  a day to highlight the dignity of children and their need for love, care, and respect, and instill in the children a sense of independence and national pride.

This year Half The Sky is  bringing more awareness to the tremendous needs of  orphans in China by sharing one childs story... Bo Yuan.

BoYuan: One of Many Thousands

This International Children’s Day, we’d like to share the story of one special child whose life has been transformed through Half the Sky.

BoYuan was born with anal atresia, which requires surgery as soon as possible after birth. He had surgery at a local hospital when he was several days old, but the surgery wasn’t done well and post-op care was extremely difficult. His wounds became infected. Luckily, the institution had somewhere to turn. The China Care Home.

When BoYuan arrived at the China Care Home, he received surgery right away. Since then, he’s had to have four more surgeries. Each time, he’s had a loving China Care nanny to help him through experiences that would be scary, painful, and confusing for any child. She’s stayed with him at the hospital and cared for him during his recuperations at the home. BoYuan's nanny has made sure he knows he’s not alone.

While BoYuan may still need further medical treatment, he is also a thriving, mischievous little boy. He can walk quickly and well. He is quite a smart boy and is learning to talk. He’s sweet too, and fetches toys and gives them to younger children who are crying. He recognizes all the nannies who take care of him and calls them “Qi, Jin, and Zhang Mama.” We know that this adorable child has a bright future despite his difficult beginnings.

We’re changing life stories for the 250 children like BoYuan who receive care each year at our China Care Home and the thousands of children in other Half the Sky programs across China. Their stories are being rewritten right now. And it’s happening because of the work of Half the Sky and the help of our international family of supporters.

 "Please visit Half the Sky to learn more about their work http://www.halfthesky.org/."

Lucy

We had been postponing Lucy's cleft palate surgery for a few months but after meeting with her orthodontists a few weeks ago he suggested that  we not wait too much longer .

Lucy was very nervous about the surgery ( alveoloplasty   and rhino plasty ) . Mary had the same surgery for her cleft palate last year so Lucy kinda new what to expect.   Mary breezed right through her surgery but Lucy ended up having a few minor complications .  She had a very bad reaction to the anesthesia  and that made her recovery a little slower along with some bleeding issues.

  The third day post op she finally turned the corner and started feeling better.   The hospital was having their annual Turtle Derby Fundraiser and Lucy was feeling well enough to venture down to the court yard to watch .

 Her little face was so swollen she couldn't talk or smile .

The Clowns also stopped by and brought lots of happiness  !

Right now the most painful part is the bone graft taken from her hip .  We are praying the graft takes and will not have to be repeated in a few months.

This weekend we had a wonderful visit from Paul and Meghan .  They came home for the weekend for Megs friends wedding . 

The girls always love when they come home .  Just a few more months and Paul will graduate and be a Doctor of Chiropractic !  We are so proud of him following in his Father and Grandfathers footsteps .

Little Miss T had a pretty good week.  We will head back up to Philly next week for another check up .

Gemma Rose will start her new chelation medicine this week along with her daily chelation infusion to hopefully lower her Ferritin  levels . We are praying she does not have the same bad reaction that she had two years ago when she tried this med.
 She  still goes to Hopkins every three weeks for her blood transfusions . We are  hoping this summer we can stretch it to every 4 weeks but if not we will make it work out .

What a blessing to have everyone home and doing so well !

She Made It !

We have had quite the week .  Last Saturday the girls attended the Taylor Swift concert . ( Thank you  Grandpop).  Teresa woke up at 5:30am  ready to go . She only changed her outfit twice and finally settled on her sparkly silver dress .  By 7:00pm when the concert started I thought she would be exhausted but she was full of excitement.   The concert was "FABULOUS"-Teresa.  She loved every second of it .  I think the people sitting next to us had more fun watching Teresa perform every song than watching Taylor Swift.  Teresa took her light stick and used it as a microphone and sang and danced and smiled the entire night .  It was a priceless memory .  I wonder if Taylor knows how much happiness she brought to one little girl that night .

"Look, look at her sparkly red guitar and microphone ! I want that for my Birthday "- Teresa
(the guitar had sparkly hearts on it too. )


On Sunday Teresa started with a stomach bug and it caused a few problems and landed her in the hopsital.   By Tuesday she was feeling better and she made it home just in time for her recital dress rehearsal . She was so afraid she was going to miss it .

Friday we headed back up to CHOP to make sure all of her tests were  back to normal .  She also had a stress test done .  Her oxygen dropped to 37 during the test but do you think this would stop her ?... No way, she was determined to pass this test so she could dance on Saturday in the recital .  She had to lay down and rest for several minutes afterwards but then popped up and said "O.K , I can dance !"

Back in September when Dance classes started we were unsure if Teresa would be able to dance in the recital . We were unsure if she would have the energy or the gift of a new heart by then.

Saturday was the recital and Teresa danced in it!  She was so excited .  She had been looking forward to this day for quite a while and she made it !

On Saturday evening we ran from the recital straight to Teresa's fundraiser that  our friends were having for her .   We have been so blessed to live in such a wonderful community with so many amazing friends .  It really touched our hearts to see so many friends , neighbors , teachers , transplant teams ,church and family come out and support Teresa.   Your love and prayers are a tremendous gift to us all !  Thank you !
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This week Lucy is having surgery . We would be very grateful for prayers for her .

Prayers , IV Fluids and Chinese food !

Prayers , IV fluids and Chinese food,  are what makes this girl feel better.

Teresa was admitted to CHOP on Monday because of a few complications from having a stomach bug over the weekend .   Today she was feeling much better especially after having  Chinese noodles for lunch . 

Yes , that is her Taylor Swift  T- Shirt from the  concert .  She has been wearing it for 3 days .

First Tooth

Guess who lost their first tooth ?

Teresa was not too happy about it at first... then when Lucy told her the tooth fairy would come tonight and leave her money ...she was VERY happy... why ... because she wants to buy a pair of sparkly high heeled princess shoes!

The Tooth Fairy  might just go broke on this little girl tonight .

Ballet Pictures

Yesterday was ballet picture day !
Teresa had not been feeling well over the weekend and was still not feeling well on Monday morning  but there was no way she was going to miss the ballet pictures .   I think she willed herself better because by Monday afternoon she had a lot more energy and was breathing better .  
For the recital she is going to try and dance without her oxygen .  Dr. H said we should do several dry runs first .   So far so good ...

 

Anonymous ...

To the  anonymous  person  who left us  an unkind comment ... I debated whether or not to respond to you  .  Until you have walked a mile in our shoes  and God forbid  have a child waiting for a heart transplant then you will never  know how we feel . Yes, Teresa is looking forward to dancing in her recital .  She loves to dance . She needs something to look forward to , it is what keeps her going .  And yes she is looking forward to seeing Taylor Swift . She has had to sacrifice and suffer so much in her little life time  .You will never know the daily struggles she has to contend with as she struggles for life  . She deserves  to look forward to some happiness by  doing something she loves !

Transplant is a gift that one family gives to another .  It is a miracle that we do not take for granted and we will cherish forever .  The gift of life for one means the end of life for another .

We have asked for prayers for Teresa to receive her gift of life AND we have also asked for prayers for the family that will give Teresa a second chance at life through their tremendous gift .We are not praying for another child to die so Teresa may live .  We are praying for Gods Will to be done .

To your friends no explanation is necessary , to your enemies none will do ...

Just an O.K. Visit

Today Teresa 's check up was just so so .
She has a cold and because of that her blood work was off a little .  Her heart  function has declined but Dr. Hanna thinks this is because of the infection .   She was started on an antibiotic and her diuretics were increased to try and take some of the added stress off of her heart .
The good news is she gained 1POUND !!!!
We still can not believe it has been 10 months of waiting for a new heart but I know God knows the day and time .
Dr. Hanna said that most of his patients receive their transplants while he is away on vacation ,  since he is leaving tomorrow for vacation , he is predicting she will get her new heart this week .

This would probably be the worst week possible for us because next  Saturday the girls are going to see Taylor Swift ( for Christmas Grandpop gave the girls tickets to see her on May 11 in D.C.).
The girls also have their ballet recital on May 18th. .  Teresa has been so excited about dancing on stage . She can not wait to wear makeup and put on her costume .  This song (that is playing ) "How to Believe" by Tinkerbell  is the song they are dancing to.

The one thing that I have learned over the past 10 months is that I am not the one in control , God is .  Teresa's new heart will come at the exact time that God has planned  .
                           ( To hear Teresa sing Party in The USA , pause the music at the bottom .)

  Taylor Swift sent Teresa an autographed poster .

Monthly CHOP visit Friday

On Friday we will travel back to CHOP for Teresa's monthly check up .  Praying that everything goes well and no major changes to her heart and lungs .

We had a great time last weekend in PA.  with Paws 4 People's Puppy Palooza .   This is the organization for Emilia's service dog Mayzie .     They are an amazing organization that helps so many children and adults .

We are so happy to be a part of the Paws 4 People family . 

1st. Round or 2nd Round ?

Are you a 1st. round draft pick or 2nd round pick?

Not that I am a huge football fan but someone in our family is a huge football fan and has been very interested in the draft picks .  This made me think about how the players that were not chosen first felt . Did they feel any less a part of the team being picked second or third or even last ?

When I was younger I was always a second round ( well actually a tenth round or last pick )  when teams were being chosen for dodge ball or whiffle ball .  I was not the best batter for whiffle ball or the fastest runner in dodge ball  so I was always chosen last .  I remember thinking how unfair that was .  Didn't they know I had so much more to offer the team than how good an athlete I was ?  To them it was more important to win  the game.

On the rare occasion that I was team leader and could pick my team , I always chose the kids that were chosen last or not the best players athletically .  We never won a dodge ball game or whiffle ball game but we played harder and with more determination than the other team .  Sure they won, to them it was easy , but we had more determination    .  We  all knew we were the underdogs but it did not stop us .

This  "second round pick " was something that I always felt was unfair.  When we started our adoption journey I knew we would choose a child that was not a "first round pick. "   We wanted a child that would not be chosen first , one that was waiting longer , one that ...  had something deep inside that was not visible as being perfect .

By all means I do not think that healthy children are not deserving of a family .  ALL children deserve a family of their own .  This is just what works for our family .  There are over 143  million orphans in this world , ALL of them deserve to be loved and have a family !  And ALL of them deserve to be chosen FIRST .

When we were adopting Lucy our adoption agency told us about several children .  They all sounded wonderful .  But then they mentioned a little girl who had been waiting a very long time for her family to find her .  She had been shuffled between adoption agencies  , no one was too interested in her because of her medical condition and how she looked .  I knew before even seeing her picture she was our daughter .   Her photo was of a shy , tiny little crooked girl .  We were in love and could not wait to get her home and kiss her . 


 The same scenario happened with Emilia , she could not walk . No one wanted to make her part of "their team".  Gemma , her diagnosis scared so many, what could she bring to the team ? .  Teresa ,well who wanted to chose a child for their team that may not stay on the team for very long or help them to  " win" .  That's just it , they all had something to bring to the team that wasn't about winning " the game" .   The "win" was in the race and how we all ran the race .  All of our children brought their own special gift with them . They all had something our team was missing .

They all are helping us to   fight  the good fight,  finish the race and keep the faith.