The Bartlinski Bunch

" Teresa "

" Teresa "

Teresa "Fang Fang " Bartlinski

Teresa was born on December 25, 2006 in China. She was born with a very complex heart condition. In July 2010, GOD added Teresa to our family through adoption. We have been blessed with 9 wonderful children. Gods grace has woven us together as a family. Upon bringing Teresa home from China we unfortunately learned she not only needed a heart transplant but also a lung transplant. Her doctors feel she would not survive this operation. Please help us to pray for a miracle for Teresa's heart and lungs to be healed. She is a very special little soul who has touched so many lives around the world ...
I BELIEVE IN MIRACLES!

Sunday, June 30, 2013

please pray !

Surgery is at 7:30am Monday morning . God must move another huge mountain . They feel her pulmonary pressure may be too high for the Berlin to work . It is not looking hopeful but the are going to try . She said she would not give up on her but If the pressure is too high the blood will not be able to go to the left side and nothing else can be done . She will bring her out of the or for us to hold her so she will not die alone . We always promised Teresa we would never leave her . Please pray and beg god to keep her with us . If it is His will to take her home we would ask for prayers to accept this also . Please share an ask the world to not stop praying !

One Mountain at a time!

Thank you Jesus!  God is moving a mountain!

Teresa's x-ray looks a little bit better and all bleeding has stopped from her eyes , nose and mouth!!!!!
The power of prayer !

Sunday June30 Ecmo -13

Today a huge mountain needs to be moved .  Teresa's lungs are very messy inside with a lot of fluid surrounding them.
Please help us pray for this today .
This will make it very hard for her to survive tomorrows Berlin heart procedure.
Once she is taken off  ECMO tomorrow and the Berlin is inplanted  Her lungs will take over and they HAVE TO work .  There is no other option.

This is what we read today in our daily devotional book.

"When the going is rough or the way ahead looks uncertain, we are tempted to look back to "the good old days"  or to look for "greener turf".   Are you resolved to keep your eyes fixed on Jesus and to  "Stay the course "in following him to the end?"

We have kept our eyes , heart and souls completely fixed on Jesus every step of this journey .
This journey is now between Him and Teresa.








Saturday, June 29, 2013

Day 12 ECMO

Thank you all who dropped off Tieras for Teresa ! They are all beautiful. I can not wait for Miss T. to see them! She was stable on the ECMO today day 12. Her lungs are VERY junky and the x ray is not good. They MUST improve by monday or she will not survive the Berlin. The bleeding in her nose mouth and eyes has slowed down . The concern is the amount of bleeding that will occur during surgery may not be able to be controlled because of the amount of blood thinners she is on for the past 12 days. She is still VERY heavily sedated but continues to come to every 2-3 hours. I love to see her eyes open. But she is so scared because she does not understand the tubes in her mouth. She shakes her head no that she is not in any pain , but shakes her head yes she wants that tube out of her mouth ! She gave me the thumbs up when I told her we would take her to Disney World to see all the Princesses when she gets better. She does not like it when I talk about Gemma or Home . This makes her cry silent tears. Just breaks my heart.
Please pray specifically for her lungs to heal and clear up , her to have no ECMO emergencies , and ALL her organs to stay strong !
 
Little Miss T. is fighting hard still.  She is tiny but mighty!  She continues to defy all odds.  On Monday Our Good and Gracious God will show us His Miracle.  For God is Good ALL of the time!

Friday, June 28, 2013

Very Dire


We just had a meeting with the wonderful team of Docotrs. They wanted to make sure that we knew how dire the situation is with Teresa right now. Even though we know , when you hear it spoken out loud, "We are in the HEROIC phase, and It is VERY dire". I can hardly breath. They wanted to know if we felt it was too much for Teresa. Teresa will never stop fighting! So never will we. This is just another opportunity for God to create a bigger miracle. When your Doctor asks you if it is OK to pray and cries with you ... As we came back to the room , Teresa's nurse was singing one of her favorite songs ALONG WITH TERESA. Once again she broke through all sedation and paralytic and is trying to communicate . She is so strong!
Teresa will be ok. ... either in Jesus arms or in mine.

Thy Will Be Done

"For Gods Will to be done" has always been our prayer.

For Three years God gave Teresa a family. Her life was filled with love, endless happiness and a strong love of God.  In those three years she changed our lives. Shortly after coming home from China  ,she started calling Father Whatley ,Jesus.  She always loved to hug him. To her he is her Jesus.
.
Now God is leading Teresa on a much different journey.  For Three years Teresa changed our hearts now she is changing the hearts of people all over the world.

Please know that we read all of your emails ,comments and texts.  They have come to us from all over the world telling us how Teresa has touched their lives.   Even though I can not answer them all , please know that they have all touched our hearts.




Teresa is stable .  She is still coming in and out of sedation.
On Monday she will have a bilateral ventricular assist device ( Berlin Heart)   implanted.  This will give her a better quality of life.  She will be able to get up, play, eat and walk around.
After resting for 6-12 weeks she will be re listed for a new heart.This is a VERY risky surgery.

God  continues to carry Teresa  through every obstacle.  She is still fighting hard!
Her Medical team is in awe at her ability to fight, survive and try so hard to be the BOSS!

Thursday, June 27, 2013

Donor Heart Was Rejected

Unfortunately, following the heart catheterization the doctors determined that the donor heart has been rejected. Teresa will be relisted at the top of the list for a new heart. She will remain on life support until Monday, when she will go through another surgery to put in a Berlin heart. This will be her 4th major procedure in 2 weeks, so the first major hurdle will be for her to fight to survive this operation.

The Berlin heart will give her 6 to 8 months to wait for another heart. During this time she will be able to come out of sedation, but will have to remain in CHOP with the Berlin heart and other machines attached to her at all times. The doctors at CHOP have never seen another child with these same circumstances, and have only implanted this device for one other child.

Please continue to pray for Teresa!! We need to pray that all other organs will remain stable and that she survives Monday's procedure!!

- Laura

Talitha Koum!

HE took the little girls hand and said "Talitha Koum!"... "Little girl get up!"

BELIEVE!!!!!

Heart Cath.

Around 2;30 today Teresa will have a heart Cath.  to try and determine just why her new heart is not beating .
Options for help are becoming VERY limited.
Teresa is NOT giving up .  Please do not stop praying for her!
She is resting now after being given enough sedative for 3 large
adults.  She wants up and out of here.  There is too much to see and do.

Teresa "Wished" to be a princess like Belle.  Belle was VERY moved by Teresa's story!



We have promised her she is going back to see Belle as soon as she gets out of here!

Please Jesus let there be a MIRACLE TODAY for Teresa!

Wednesday, June 26, 2013

Strength

Lord give us strength!  I am tired of walking these halls and seeing so much suffering.

They are having a hard time keeping Teresa comfortable under sedation because she just does not want to sleep.  She is crying silent tears and it breaks my heart. She has suffered so much in 6 years.  Please God give her rest tonight and HEAL her heart.

The Boss

The Boss will have to write a book or have a movie made of the tremendous MIRACLES  that are happening in her life.

Teresa is resting right now.  She woke up several times today and tried her hardest to tell me to get this tube out of her mouth .  She kicked her feet and tried to pull the tube out .  She was also able to answer questions again by moving her head and eyes yes or no.  The nurses can not beleive with the amount of sedation she is on how she keeps waking up and answering questions coherently.  But I can .  It is her iron will to live .

Tomorrow is ANOTHER important day for the Boss.  If her lungs are clear enough she will have a heart cath to try and see exactly why her right heart is not functioning.  Based on the outcome it will determine the next course of treatment to help her heal.   I don't know nor do her Doctors know exactly what that will be.   Talk is it could be a right ventricle assist device to help give the right ventricle time to heal.  If anyone can do it Little Miss T can !

For the past 8 days she has overcome and God has carried her through EVERY emergency that has happened.  So many other little things have been happening to her also (non irradiated blood, blisteres at her IV sites , phlebitis, ATN acute tubular nephrosis, very enlarged liver and spleen, arrythmia,  EAT ectopic atrial tachacardia, ventricular tachacardia,  fluid in lungs)  and our girl is still FIGHTING! 

Our dear lord has not left HIS little bride alone.  HE has given her a family and she is not letting go!

While I have a second , I wanted to thank everyone for the tremendous love and support and prayers for Teresa. The cards, gifts, donations, gift cards for hospital food, help with the girls back home, kind words,rides, yard work... SO THANKFUL!!!!

Everything Teresa has been through and she is still fighting! Today she could not come off ECMO because her right side of the heart is not working. There are two different views as to why this is happening. One - her pulmonary pressure is too high , two- -just poor right ventricle function, rejection. She will have a cath. to try and figure this out. First her lungs are VERY wet and need to improve . She is also having Arrhythmia. All her other numbers look good . She is peeing and her kidney function has improved .

She is fighting so hard to live. Just like everything Teresa does she never gives up until she gets things done her way . She is really trying right now to be the BOSS. Please share and ask EVERYONE to pray . Watching her like this is very hard.
I keep reminding myself that Jesus LOVES Teresa far more than I will ever be able to. HE is looking at her life from Heaven and I can only see it from earth.
He surely must know that I need her in my arms right now more than HE needs her in His.
This is a photo of Teresa on her First Holly Communion Day. She was given special permission because of her age. She said she loved Jesus so much she was going to MARRY Him! This is the day she married Jesus.




 

Fundraiser at Peace A Pizza Today

Just a quick reminder for anyone who may have missed the posts on the Pray for Teresa B Facebook group, Peace A Pizza in Catonsville is donating 20% of their profits to Believe in Miracles, a 501(c)(3) non-profit that helps the family with Teresa's medical expenses. The fundraiser is from 12pm to 8pm today, so please go and enjoy some delicious pizza and salads!

Peace A Pizza
15 Mellor Avenue
Catonsville, MD 21228
(410) 747-2255


- Laura

Wednesday Morning Update

The ECMO circuit was turned down this morning and the left ventricle looked great (the side repaired during Monday's surgery), however the right ventricle is not responding. Teresa will have a heart catheterization tomorrow to check the pulmonary pressure. If meds can't help the left side, there is talk about a possible lung transplant (unlikely and very high risk) or a right ventricle assist device (RVAD) (short term solution only).

Options are becoming more limited, but Teresa is still fighting hard. Please don't stop praying for her!!

- Laura

Tuesday, June 25, 2013

The Brave Little Soul- TERESA


The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength, she unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.

Priorities became properly aligned.

People gave from their hearts.

Those that were always too busy found time.

Many began new spiritual journeys, some regained lost faith - many came back to God.

Parents hugged their children tighter.

Friends and family grew closer.

Old friends got together and new friendships were made.

Distant family reunited, and every family spent more time together.

Everyone prayed.

Peace and love reigned.

Lives changed forever.

It was good.

The world was a better place.

The miracle had happened.

God was pleased.


THANK YOU FOR SENDING THIS TO ME DEAR FRIEND !  I know Teresa is that brave little soul.  GODS WILL will be done tomorrow  and we will rejoice in his goodness in heaven and earth !

Tuesday update

Tomorrow (wed.)  they will turn down the ECMO circuit to see if the new heart will function.  We need the right ventricle to WORK and be STRONG.    8a.m.  Wednesday.  Please God!!!!!!!

Tuesday 6/25/13 day 7 ecmo

Today is Teresa's 1/2 year BIRTHDAY !  She is 6 1/2 today !

Last night's event  having to come out of surgery on ECMO  and severe bleeding coming out of everything with an opening, along with last Tuesday, cardiac arrest, Friday's  ECMO circuit cannula cracking, was another time in our life that we would like to forget forever .

Today Teresa is stable at the moment.  Dr. Fuller and her entire surgical team stayed late last night until she felt she was stable enough to leave.  (She ordered them all Chinese food for dinner)  Teresa would have LOVED this (her favorite food).  Dr. Fuller is an amazing surgeon with a tremendously big heart!  We have been so blessed to have her helping Teresa.

Dr. Fuller was able to fix the obstruction in her left atrium.  The problem then became the right ventricle.  It was not happy being on bypass for such a long period of time. Dr. Fuller thinks if the heart can rest a bit it will be able to recover.  The plan is to try and turn down ECMO tomorrow  while doing an ECHO to see how the heart functions  .  If all goes well she should be able to come off soon.

We are so happy that the left atrium obstruction could be repaired.  This should also make the right ventricle very happy .

For one little orphan girl who only wanted a family of her own, I am in awe at what God has done for her in her life.  Not only did HE give her a family, HE has made everyone in the world her family!  The prayers, love and support coming in for Teresa from all over the world is nothing short of another miracle for Teresa.  She is loved by so many.

Happy 1/2 year Birthday Sweet Princess Heart Warrior!


Monday, June 24, 2013

Update - 8:45pm


The surgery successfully repaired the left atrium of the heart and blood flow is good. However when they took Teresa off bypass the right side wasn't happy, due to being on bypass for so long in the OR. Because of this they had to put her back on ECMO. She will remain on ECMO for a few days to give the right side time to rest. The hope is that the right ventricle will come back after these days of rest.

After Teresa left the OR and went to the room, she began bleeding out of her nose, mouth, eyes, IV sites, and chest. They gave her blood to bring the clotting factor to a good spot and bleeding stopped everywhere except her chest. She is currently still bleeding from her chest, but it will hopefully slow as the clotting factor increases. The surgeon is staying nearby to watch the bleeding -- if it continues into the night Teresa will have to go back into the OR.

Teresa is not out of the woods until the bleeding from her chest stops! Please pray that the bleeding stops soon, and that after a few days of rest the right ventricle will come back!!

- Laura

Update - 7:30pm

Teresa came out of surgery but has internal bleeding. If it can't be stopped they'll have to take her back into the OR. Please pray for the bleeding to stop!

Update: The bleeding has slowed down, but we don't know if surgery is needed yet.

- Laura

Update

Not coming off ECMO . Not good . Please pray ! 

Update

Heart repair is done  . Have not been told exactly what was done yet . Trying to see If she can come off ECMO . Will know in 30 minutes . Please pray she can come off of life support and the heart will function beautifully ! 

Monday June 25, 2013

Teresa just went back . It has taken a village ( actually the world) praying for her and helping us on this journey . And we are eternally grateful to everyone ! It took a village to get her from her room to the or because of all if her equipment . But she made it safely . Pray god will keep her here in our arms !!!!!
 Teresa went back to the OR dressed as a princess.



Today Show @ 8:33am

The Today Show segment featuring Teresa's story will air at 8:33am EST on NBC today! 

- Laura

(We were previously told 8:45 but just got an update that it will now air at 8:33)

Sunday, June 23, 2013

Surgery on Monday

Surgery will start around 12 on Monday to repair Teresa's left atrium.  It should last around 4-6 hours. 
Dr. Fuller will do one of two things that she feels will fix the problem . 1. widen the narrowing left atrium pulmonary veins by using a homograft or   2.  move   the left atrium wall making it easier for blood to fill the atrium.  She said she will have to wait until she gets in there to figure out what she will do .
Teresa's left atrium was very small and a piece of her atrium is left to connect to the new heart atrium in the transplant.  It is almost as if the two hearts are holding hands (Teresa's old heart and the donors heart) . Because Teresa's  atrium was SO tiny , it made the connection very narrow , not letting enough blood return to the atrium causing it to fail.  She thought at the time that it would work without repair but this proved wrong when she went into cardiac arrest. 
Praying for an uneventful night.
Praying for God to guide the surgeons hands and heart and allow her to walk on water as she is guided by God to fully repair Teresa's heart.

Saturday, June 22, 2013

Eyes wide open

Look who opened her eyes all the way today!  I wish I could say she was happy but she was not.  She does not like anything in her mouth.  She becomes very scared and puckers up her little lip and cries silent tears.  It breaks my heart.
The great news is she was stable today and had NO emergencies!   Praying for kidney function to improve!  Tomorrow she will rest and prepare for surgery on Monday to repair the left atrium.

 “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

Day 4 ECMO

Little Miss T is a Princess Heart Warrior!
Her ability to fight back from what ever happens to her is amazing.  She never gives up.

Last night as I was getting ready to go to my sleep closet ( actually a sleep room down the hall .  Ed sleeps on a bench in Teresa's room so one of us can be with her at all times in case she awakes so we can comfort her), the ECMO cannula cracked as Teresa was being repositioned in her bed.  Thanks to the very fast reaction of her wonderful nurse , a crowd of Doctors,  nurses and ECMO specialist descended upon her room within seconds.
Several Doctors applied pressure to the site, ordered more blood , called surgeons and called back to the hospital an ECMO expert.
Ed and I stood by helpless watching as Teresa was hemorrhaging.  Two chaplains were called in to pray with us.

The Doctors were unsure on how to repair the canula , because this had NEVER happened before.  It was finally decided upon to change out the entire stop cock( the piece that had cracked).    She was taken off ECMO  as they repaired the broken piece and we all held our breath .  Like Teresa ALWAYS does she bossed her heart  and stayed strong.

I can not imagine having to go through this alone with out Ed here.  Right now work, house payments and bills don't even matter.  Comforting little Miss T is all that matters.  Her strength and determination to live is giving us strength.  She is a amazing!
The great news this morning is her creatinine levels have stopped rising ( kidney function).  This is what we needed for her kidneys to start working again. Praying hard for her kidneys to heal .

 The stop cock (the portion that cracked ) will be sent back to the manufacture for investigation to figure out how and why it cracked.  It should not have broken just by repositioning her head.  This is a photo of Teresa after she was stabilized and cleaned up a little. The white thing sticking up is the stop cock and it cracked at the base.


The Boss is resting today and doing better.

I have so missed hearing her little voice, so I have been watching her videos .  I thought everyone else might enjoy them to .


The Boss has spoken!

So thankful for the wonderful Doctors and Nurses here at CHOP !

Defying the odds again

Ed an I can breath again thanks to the amazing  team of doctors and nurses at CHOP . 
Teresa has defied the odds again .
Tonight while Teresa was being turned the ecmo cannula cracked causing Teresa to hemerage .  She is covered in blood and being given transfusions for the   massive amount of blood loss.
This has NEVER happened before an there will be an investigation to see what happened with this piece that broke .  
Why it happened to Teresa I am still asking god . 
We are so grateful for this team of doctors at CHOP! 
Thank you all for praying for her ! You all are her amazing prayer warriors ! 

Friday, June 21, 2013

Emergency

Please pray now the ecmo cannula cracked in her neck when she was turned she is bleeding out pray hard now ! 

Day 3 on ECMO

You Know that feeling when you first wake up and your mind is not fully awake.   For a moment you think all is good and then you are hit with the reality.  This is what has happened for Ed and I every morning.  We do not wake to the sounds of the birds singing or girls laughing.  The sounds here are much different.  Beeps, alarms and children crying.  We pass other parents in the hall.  Their faces tell their childs story.   No words, just a  head nod is all.  We all can feel each others pain.

We sleep and eat out of necessity.  We want one of us by Teresa's side at all times so we can comfort her when she awakens for short periods.

This morning she is stable and resting.  Her blood work and gasses look good.  We are praying that her creatinine (kidney function) will plateau today and start trending down.   She is very swollen , so praying that she will start eliminating  more fluid.  Her liver is very hard and enlarged.  Praying this will reside.

 We play all of Teresa's favorite Disney princess songs for her to hear.  Even though she is sedated , when she awakens we know she can hear them.  She signed that she wanted a drink.  Poor baby is so thirsty and she hates all the tubes in her mouth.

Her nose and eyes and mouth continue to bleed a lot.  ENT is coming today to have a closer look.  Her nose has been packed but this just makes the blood come out other places more.

As one person so kindly wrote ,  we know we are praying to the same God that created Teresa with her little broken half heart.  Her response to people when they ask about her arm , she always told them ,"this is how Jesus made me".  And she is right , this is how Jesus made her .  With half a heart and a little arm.    In this little broken half a heart HE gave her more love for others, life and GOD than any other person I know.  Yes, God created her this way for a reason.  She has defied all medical odds, surviving  birth, life in an orphanage for 3 years and no medical intervention to repair her heart.  God loves Teresa far more than we ever will.  This is all Gods will for Teresa.     She spreads Gods love to others by the endless hugs that she gives to others.  She loves to hug.   She also loves to talk about heaven and all the beautiful flowers you can pick there.  She loves rainbows and the beautiful colors.   God gave her incredible strength and a magical personality.  Through her life HE has touched thousands of lives around the world.  She has inspired others  to adopt, become organ donors and love God.  Hearing her story has given others strength to face struggles in their own lives. 

Gods plan for Teresa's life has been incredible.  She has touched so many lives in 6 short years.

Father Whatley reminded us that yes Teresa will have her miracle.  Every part of Tersa's life has been a miracle.  Her last miracle will be for God to heal her heart here on earth or HE will heal her heart in heaven .   
When we adopted Teresa we wanted her to know the love of having her own family.  How long God would share her with us was unknown.  She wanted a family more than any other child.  At three years old when we adopted her  she knew she did not have a family and this was all she wanted .  She was so happy to have 8 sisters and brothers. 

We are praying that God will share Teresa with us for a very long time.
Please also pray for all of the children here in the CICU and Teresa's heart HERO.






Thursday, June 20, 2013

Today Show Rescheduled

The Today Show segment featuring Teresa's story has been rescheduled for next week. We'll post an update as soon as we find out the exact day it will air.

- Laura

Baby Steps

Teresa is taking baby steps.   She is still teaching me so much on this journey. Right now it is patience and giving complete trust and control to God. 

Teresa is stable at the moment.  We will let her heart rest a few more days and then she will have another major surgery on Monday.  We are praying for no major complications while on ECMO and for her kidneys to start functioning better.

She is fighting so hard.  She is now opening her eyes a little and squeezing our hand and answering questions with a squeeze.   We can tell that magical princess personality is still there( this was a concern after suffering through  CPR for thirty minutes). 

Dr. Fuller feels confident she will be able to somehow repair the left atrium pulmonary veins.  She will know more when she actually visualizes her heart. 

For me I wanted the echo to show full , perfect heart function today and be taken off  ECMO.  This didn't happen.

Her eyes , nose and mouth are still bleeding from  the blood thinners that are needed for the ECMO machine to not clot.
It is very difficult to watch Teresa cry silent tears.
We feel so helpless.
She is trying so hard to be the boss.

Today we had  a wonderful visit from Casey Cares!  What an unexpected bit of happiness.
Three of my best friends also


drove up to visit  and brought Gemma ,Emilia and Grace for a visit.

Meredith ,the child life specialist helped to prepare the girls for all of the machines that they would see hooked up to Teresa. They all held her hand and talked to her.

We are taking everything day to day and minute to minute, one baby step at a time.
Thank you for all of the prayers and love. Please know we read and hear all of them  and are so grateful!

God is in control and will need a few more days to perform Teresa's miracle.

A long Hall

Based on the meeting with the  surgeon the echo showed good results BUT Teresa will have to have another surgery on Monday to repair her left atrium.

She will stay on ECMO until Monday.   Dr. Fuller wants Teresa's kidney function to improve first.  Right now her numbers for her kidney function  are very high.

 She will repair the left atrium pulmonary veins.   Teresa's broken heart  vessels were smaller than the donors .  This is what is causing the left atrium to fail.  Not enough blood is flowing from the lungs to the left atrium.

Dr. Fuller thought she had a good day and she is feeling confident that once she performs this procedure on Monday Teresa's heart function will improve.

She is in for a very long road , but we know with Teresa's very strong will to live , if anyone can do it she can.

Waiting

Teresa had her echo this morning . We are still waiting to talk to the surgeon . We will update as soon as we can . I know Teresas biggest advocate right now is her Heart Hero. This chid who gave Teresa an unbelievable gift lives on in her . I can hear him/ her now whispering in Jesus ear ...

The world

Teresa has people praying for her from almost every country!   The world has surrounded her in prayer.     
Surely God hears our cry.
We pray God will keep her in our arms here on earth to spread His love to many through her endless hugs that she gives so freely to everyone. 

Wednesday, June 19, 2013

A few links

Below you will find links to a few articles about Teresa by the local Baltimore media. Hopefully Teresa's journey will draw attention to the great need for organ donors across the country. A big THANK YOU to all of the media outlets for sharing Teresa's story.





Fox 45 Baltimore: Six-year-old Catonsville girl on life support

http://foxbaltimore.com/news/features/top-stories/stories/sixyearold-catonsville-girl-life-support-after-heart-transplant-20554.shtml#.UcJ8Odj4Ja4


CBS WJZ Baltimore: 6-Year-Old Fighting For Her Life After New Heart Stops Beating

http://baltimore.cbslocal.com/2013/06/19/praying-for-a-miracle-6-year-olds-new-heart-stops-beating-after-second-transplant-surgery/


Baltimore Sun: Catonsville girl receives transplant, but is rejecting heart


http://www.baltimoresun.com/news/maryland/baltimore-county/bs-md-co-girl-heart-transplant-20130618,0,3834175.story




-Eddy




Resting

Thank you everyone for all the love, prayers and support . They mean so much! Teresa had a restful day. She was taken off the paralytic and has been trying to communicate with us through squeezing our hand and wiggling her little piggy's! She nods her head when we ask her questions. She is fighting so hard! Tonight 5 of our children drove up to Philly from Baltimore to see Teresa. It was so nice to have them all here. Several people have asked for Teresa's address here at CHOP-3401 Civic Center Blvd., CICU room 6ST11, Philadelphia PA. 19104.

Tomorrow is a very big day . The ECMO machine will be turned down and this is when we will see how damaged the heart is and if it can resume function on it's own. Please pray for a HUGE miracle. We need both ventricles functioning.
 We are so thankful for all the love and support from all of our friends and family. 
 Even  through  all of her suffering right now , Teresa continues to touch so many lives.



This is Teresa's angel, Dr. Fuller.  She is the cardiac surgeon who  gave Teresa her Hero's heart. 
This blanket was signed by everyone at Teresa's prayer service last night .  We  covered her in prayer by so many that love her.
 Praying for a Miracle on 34th. Street in Philladelphia tomorrow!

5 minutes

Jesus has given us hope for today !  Teresa was taken off the paralytic and morphine  and woken up for 5 minutes. She squeezed my hand, wiggled her toes and tried so hard to breath and open her eyes!
This is fantastic news !  

I told her she was the boss and she had to boss her heart now to beat and she squeezed my hand again . 

She loves  being the boss! 

Tonight eddy is bringing up grace , Mary and Lucy to see her .

So grateful for something as simple as holding her hand and watching her wiggle her toes! 

Tomorrow she will slowly be weaned down on ecmo and given an ultra sound to look at the function on the left and right sides of her heart !  This will be day three on ecmo , her Easter Sunday after 
 going through Good Friday on Monday .
 

Day 2 ECMO

video

First I would like to thank our wonderful community an church for the beautiful prayer service last night . I was told it was amazing . This does our heart good . Our friends are amazing ! Teresa had a pretty good night . We had a few scary moments but she quickly fought back . She is really trying to be the boss of her new heart . Her liver and kidney function was very high so we need those numbers to come down . We are waiting for rounds . The talk is the left ventricle may not be functioning because of how small her old left atrium was ( almost none existent ) and thus is causing problems with how the new heart was connected . This could mean she would need another major surgery to correct. She still has very little heart function . Her body is trying to recuperate from the stress yesterday of cardiac arrest and CPR . She has a very high chance of seizures because of this so she is hooked up to a n EEG to monitor brain function for seizures .
I know god has thus and is in complete control . We are praying for a complete healing and for god to be glorified through Teresa s life . Our girl is fighting hard to live . She wanted so much to be able to ride her princess bike without her oxygen .
Thank you all for all the prayers love and support! We can not answer everyone but please know your prayers and love are carrying Ed and I .
We have also been blessed by wonderful doctors and nurses here at CHOP.
Teresa s nurse last night painted her nails pink . She has had her princess tiara on the entire time and they even let her go into the or wearing her gown and tiara . The hospital gown was just not princessy enough .
Please also pray for Teresa's HERO , her heart donor. I can not wait to listen to it beating .... Hopefully soon .
video
 We also wanted to let everyone know that NBC will be airing a follow up to Tersea's story that was aired on Christmas eve.  Our hope is that by doing so it will bring more people praying for Teresa's miracle and also bring more awareness to organ donation and the tremendous need for HERO'S like Teresa's HERO.
We are taking life minute by minute and are so grateful to GOD for allowing Teresa to have another day here with us even if it is just to hold her hand.
I BELIEVE IN MIRACLES!!!!

Tuesday, June 18, 2013

There will be a prayer service at St. Mark's Church tonight, June 18th, from 7-8PM. All are welcome. 


St. Mark Church 
30 Melvin Avenue
Catonsville, MD 21228


-Eddy and Laura

ECMO

This morning Teresa came out of surgery with her right ventricle struggling but not too bad.   A few hours later she went into full cardiac arrest and had cpr performed for over thirty minutes.  She was put on life support (ECMO).'  Her left and right ventricle are not functioning at all.   At this point the Doctors are unsure of what is the cause.  The best case scenario would be the heart was shocked from the transplant and needs time to adjust.  But it has no function at all ( not good).  If this does not improve she would have to be relisted while staying on ECMO. (not good)

Things could not get get much worse.

Life is so fragile and could be gone in a second.  We are trying to hold on to the little bits of hope.   She is urinating and her body is warm .   She has had several blood transfusions and is bleeding from her nose from the blood thinners for ECMO(not good).

 I am reminded of Mary and Martha , when they called upon Jesus to come and help Lazarus because he was sick.  Jesus did not come right away .  Lazarus died.

I believe Jesus did not come right away because He did not want to cure a sick man , He wanted to raise a dead man , a much bigger miracle.

We are holding onto hope that this is what Jesus wants for Teresa.  Not to cure a sick child but to perform a HUGE  MIRACLE and miraculously have Teresa's heart start beating again in full function.  Please pray for this miracle it is huge .  She needs her left and right ventricle to start beating.  The longer she is on ECMO the more problems her body will face...bleeding,stroke, blood clots, organ failure, brain damage.

Thank you all for continuing to pray and offer loving support.  Please ask everyone you know, Pray for Teresa.  All things are possible with God!

Update

Teresa's transplant was completed this morning at 5:30 AM. Since the surgery was completed, the right ventricle on the new heart began to struggle and appeared to be more damaged than expected. Since then it was discovered that the left ventricle was also damaged and Teresa's new heart stopped working and CPR was performed for 30 minutes. Teresa has been placed on life support in order to give the heart a chance to rest. The doctors expect her to remain on life support for three days and then they will reassess. If this heart proves too damaged to function she will be re-listed for another heart transplant and remain on life support.

-Eddy and Laura

 

Pray

Urgent please ask everyone to pray now ! They are doing chest compressions her right ventricle is failing they are putting her on life  support . Please pray pray pray !!!! Please share !!!!

update

Just spoke with Teresa's amazing surgeon. She is back in her room and she is PINK for the first time in her life! Her O2 is 95. Her broken heart was very beat up and had a lot of scar tissue. Her Hero's heart looks great. The right ventricle is REALLY struggling. This is what we feared because of her high pulmonary pressure. Please pray for her . She needs lots of prayers , she has a fever and is on nitric oxide to help the pulmonary pressure.

Monday, June 17, 2013

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.