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.

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!

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!

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!

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

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!

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)

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.

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