Santa

Guess who stopped by tonight ?  
The girls heard a commotion outside and ran to the front door to see what it could be .    Santa was outside of our house on his motorcycle sleigh .  We had met Santa a few weeks ago at The Ronald McDonald house and he  decided to pay us a visit .  What a welcome surprise .  The girls were very excited .  Gemma was already telling him what she wanted for next Christmas.  Apparently Santa forgot her new doll ...(oops).
There is never a dull moment around here  . Sometimes I wish there was but not this week . We had lots and lots of Doctors visits.  I believe everything happens for a reason . When Teresa' cath. , MRI and feeding tube were canceled for Friday because of her cough and also there was not a bed in the CICU to recover in ( she was going to have to recover in the ICU )  I felt it was happening for a reason .  
The reasons : Gemma has bronchitis , Mary has the  flu and Lucy  ended up in the Hopkins ER last night with a very bad asthma attack and Pneumonia .
  Not exactly the reason I was hoping for but Santas visit made everyone feel a whole lot better !
By Gods grace , Teresa has miraculously avoided all of these viruses .

Canceled Again

Unfortunately Teresa's Heart Cath. , MRI and feeding tube scheduled for today had to be canceled .

Yesterday after having the echo., chest x-ray and EKG, her Doctors felt the LITTLE cough that she had could possibly alter the results of the cath. negatively .  They do not want to take any chances ,  so we were sent home to wait .  Everything will be  be re scheduled in 2 weeks and we will try again .

The good news is we will be home for New Years Eve.

Merry Christmas and Happy Birthday !

Merry Christmas !  We hope everyone had a very blessed Christmas . 

Thank you all for the Birthday wishes for Teresa.
She celebrated her Birthday  and Christmas  together .  Her two favorite gifts were her pink baby grand piano and a dream lights pillow . 

Thursday we are heading to Philadelphia for pre op testing and then on Friday morning  Teresa will have a heart catherization , MRI and feeding tube placed .

Please pray for positive results from the cath. and a very easy transition to  the feeding tube.  In the past few weeks Teresa has become very self conscious about her little arm and wearing her oxygen .   When other children ask her about her arm she always tells them that's just how Jesus made her .  But she really wants to be the same as all of her friends.

Teresa's Story

 http://video.today.msnbc.msn.com/today/50288556


http://todayhealth.today.com/_news/2012/12/24/16111223-one-familys-christmas-wish-a-healthy-heart-for-teresa?lite

Program update

"Teresa's Story " will air Monday at 7:40 am on The Today Show .

"Teresa's Story "

We want to share with everyone some amazing news that has been happening in Teresa's life.

A few months ago our Immigration Officer asked us to send her an update on Teresa. (  Who by the way is an amazing person.  Cindy was monumental in helping us to bring Teresa home from China very quickly .  I hope one day to be able to thank her in person and give her a big hug. )    Teresa's  update was shared  in The Immigration News Letter.   They then  shared her story  with The Baltimore Sun Newspaper  and this Friday (December 21)   Teresa's story will be on The Today Show .

Teresa will be 6 on Christmas Day  and her life has touched thousands of people all over the world .   Her magical personality and iron will to face all of the challenges in her life have touched many people .   She  has been an inspiration to so many facing medical problems of their own .  She has led many back to their faith by showing how much she loves Jesus and wanted to " Marry " Him on her First Holy Communion Day .  She has also led many families to adopt "Special Needs Children"  , showing them that  there is no fear in adopting a "special Needs"  child , only LOVE .

God has used her life to touch so many already .  We now hope that her life will also  bring more awareness to the  tremendous need for organ donation .

We also hope that Teresa's Story will touch other peoples hearts and they will  help us to pray for a MIRACLE.

"Where there is great love , there are always great miracles."  Mother Teresa

The Boss

The Boss is back!

Teresa bounced back with renewed energy and vigor from the trial run .   She is so resilient it amazes me .  Life is back to as normal as possible as we anticipate the arrival of Santa and someone very specials 6th. Birthday on Christmas !   Teresa  is so happy that she shares her Birthday with Jesus .

Teresa is scheduled to have another Heart Catherization , MRI and feeding tube within the next two weeks.  We do not have the exact date yet but we are praying for really good results .( Low pulmonary pressure, low Pulmonary vascular resistance).   We have tried to get by with out the feeding tube but it has been a never ending battle .  She has not gained weight in over a year.

All the girls are doing great also .  Emilia had the external fixator removed and  a  rod inserted for stability . She loves her new Christmas cast . 

Gemma is back to having her blood transfusions every three weeks again ( 4 was too long) .  Her daily infusions have been increased also to 7 days to try and remove her VERY elevated ferritin levels .

We would be so appreciative of prayers for Grace , Mary and Lucy .   The stress of  Teresa's Heart transplant has been very hard on them these past two weeks .   They are old enough to realize the enormity of everything happening  . They have had to make a lot of sacrifices lately .

We hope everyone is enjoying this joyful Christmas time with your family !

All of our children will be home together on Saturday . (Paul and Meg are coming home ). Life doesn't get better than that !

Home

Memorable Days .  The day we were married , the birth of our children and the adoption days of our daughters  are all memorable days filled with joy , love and happiness . I can remember every moment of each one of these days.  The day Teresa receives her new heart will also be one of the most memorable days in our life . 

Thursday night at 10pm.  the phone rang .  All the girls were asleep except for Grace and Lucy ( they are my night owls ) . Ed had answered the phone and came running upstairs to tell me that the transplant coordinator was on the phone and Teresa had a heart .   The preliminary ultrasound looked good and it seemed to be a good match . She wanted us there as soon as possible because Teresa would need to have a procedure (plasma phoresis ) to remove her blood and filter it through a machine to remove any antibodies she may have that could reject the new heart .
Luckily everyone was home  . This would save us a lot of time .  Our bags were already packed so Ed loaded them into the car  .  We called our two sons and daughter in Law and they were at our house within 20 minutes  to stay with the girls. Everything was moving along as planned.   The only thing we did not factor into this was the reaction Grace and Lucy would have at this moment .  We thought we had prepared all of the girls for what was about to occur but the fear of  this moment really upset them and we needed to spend extra time reassuring them that everything would be all right .

As we drove to Philly , Teresa was asleep totally unaware of the enormous change about to occur in her Life.  We luckily did not run into any traffic and arrived at the hospital shortly after 12 am. . We awoke Teresa and explained to her that tonight she would receive her new heart .  She was very excited because to her receiving her new heart means she will be able to ride her bike with out wearing her oxygen .( she wants a new bike for Christmas so she was VERY excited ). 
As we entered the CICU things moved very quickly .  She was prepped and intubated for the plasma phoresis.   We were told the transplant would happen after the phoresis was complete early in the morning .   Shortly after 3 am.  Doctor Rossano asked to speak to us in the conference room .    He appeared very disappointed.  He said he was very sorry but after the Doctors had examined the donor heart it appeared not to be a good match for Teresa.   At that moment I don't think Ed or I knew exactly how to react .  I could not imagine having to go through all of this again but at the same time we did not want to take any chances with a heart that was not strong enough for Teresa. 

The plan was to stop the phoresis and slowly wake Teresa up .

The next morning after Teresa woke up she looked down at her chest and asked where her new heart was . With suggestions from  child life on how to explain this to her she slowly understood and said "OK.. , I'll wait  for my new heart to be strong ".

This experience is something that is so very difficult to go through and now we will have to do it all again very soon .  We did not want Teresa or the girls to see or feel any fear from Ed or I so we were very calm . I just pray that the next time it will be a little bit easier emotionally .

Teresa has done very well the past 3 days . She is back to being " The Boss".  Ed and I on the other hand feel as if we have been run over by a truck .

Thank you to all Teresa's prayer warriors for continuing to pray !  You all mean so much to us !

Catonsville child awaits heart after transplant falls through

Catonsville child awaits heart after transplant falls through

Canceled

At 2 am Teresa was intubated and started the apheresis process . At 3 am it was determined after viewing the donor heart that it was too damaged . The pheresis is now being stopped and Teresa will be gradually awaken . We are praying for the family who's child went to heaven tonight and for Teresa to have no complications from these procedures .

UPDATE!

The doctors say that Teresa will need to have a "plasmapheresis" procedure performed on her blood. This procedure is performed so that the immune system won't reject the heart transplant. This is not relatively good news as it complicates the transplant. - alex

Urgent! Heart Transplant!

Hello everyone, this is alex. My parents and Teresa are currently on their way to Philly for Teresa's heart transplant. Please keep them in your prayers!!

Happy Thanksgiving 2012

Happy Thanksgiving everyone  !

We have so much to be thankful for .  Teresa had a great week , we had a wonderful Thanksgiving at home and Uncle David made a delicious deep fried turkey . ( We were a little unsure abut the Turkey .  We had never deep fried a turkey before for Thanksgiving so Ed bought a turkey breast just  to be safe. ) 

We are anxiously awaiting our visit back to CHOP on Monday .  Praying for good news !

Back Up

Today was Teresa's weekly Doctors visit at CHOP .    As we were getting ready to leave, the Doctor received  a phone call .  He hung up the phone , reached over to feel Teresa's head and asked the Nurse Practitioner to take Teresa's temperature.   He wanted to make sure she did not have a fever because he said she may have a heart .   She was the "back Up" .  The backup recipient is the person who will receive the transplant if "the primary recipients transplant  team" declines the heart .   The child who was the primary recipient was the same blood type and weight as Teresa but had been waiting a little bit longer than her on the transplant list .     He said he would have an answer in two hours if Teresa would receive the heart or not and suggested we go get something to eat as we waited. 

Well let me tell you , there was no way I could eat anything .  It was the longest two hours of my life.
As we waited,  a million things were racing through my head and I was a complete nervous wreck . Luckily , Ed had accompanied me on this trip.  I can not imagine having to wait  there by my self not knowing .  He on the other hand was very calm and had complete faith Teresa would be fine .
After two hours , we finally received the news that the other child had accepted the heart.

We will return to CHOP next week for more testing .  Teresa  came home today  wearing a heart monitor to rule out any arrhythmia she may be having . She has been having several episode where she feels very nervous and becomes very hot .   She also will most likely have to start with an NG tube .  She has not gained weight in over a year and she is becoming deprived of vitamins and nutrients.  As hard as we try to feed her ( it is a never ending battle), she has no appetite or desire to ever eat .  We have been trying to avoid the NG tube  but going into a heart transplant her little body will need a lot of reserve to fall back on .

Tonight Ed and I are exhausted and frazzled .  We are praying God will give us the Grace to handle this .  We are also praying for Teresa to stay strong .  She did not know what was going on today . To her it was just another visit and some special time alone with Mom and Dad. 

  Today another child received the gift of life , one family lost their childs life and we went home to continue to wait for  Teresa  to receive her gift of life. 

Life is so precious .  Enjoy every moment you have with your children !

Believe In Miracles

"Believe In Miracles",  is a non- profit organization  collecting donations for Teresa's medical expenses. Contributions can be made payable to Believe In Miracles , P.O. Box 21199 , Catonsville MD. 21228.      All donations are tax deductible.   

Fundraising , non -profits and donations for Teresa' medical expenses  are something that have been a very humbling experience .  When we started this journey we thought we would be able to do it all ourselves  but God quickly showed us that it would take much more than Ed or I could ever handle on our own .  If you feel  you are able to make a donation in any way we are eternally grateful and humbled by your generosity .  But please know that  what we need more than financial help with Teresa's medical expenses  are prayers.  Prayers will always mean more than money .  We have been truly moved and humbled by the love and generosity of so many in our wonderful community . All support is welcome as Teresa's journey to a new heart continues  and our  "Happily Ever After " awaits us  .

We had some very happy Trick or Treaters at our house last   week .  Dress up is a daily occurrence for Teresa so picking a costume for Halloween was simple ... a Princess.  Her decision changed many times . She started out on Halloween as a Southern Belle but decided the skirt was too fluffy so she changed into Belle and then settled on  Rapunzel with her blonde hair.

Our visit to CHOP  last  week was filled with more bad news .  Teresa is still retaining a lot of fluid and her liver increased 3cm in one week .  She is starting 2 more heart meds. that will hopefully help but the Doctor said she needs a new heart and soon .   The transplant team also wanted us to be aware that it may become necessary very soon for Teresa to become an inpatient as she waits for her new heart .   I am not sure how we are going to swing this , but we will cross that bridge when it comes .  God will provide a way !  This is HIS miracle in process and HE will orchestrate every move.


Emilia is counting down the days to have her Fixator removed in 2 weeks.  She is so excited .  She will have the fixator removed and The Doctor will insert two rods for stability .  A few more months in just a cast and then she will have a brand new arm !

Gemma will have her blood transfusion this week . It will be very interesting to see what  her hemoglobin level is this month because she has really been dragging this past week . She is going 4 weeks between transfusions this month instead of every 3  weeks . When I looked at the picture of her and Teresa in the tub together , her little lips were so white compared to Teresa's purple lips .

Lucy is going in to have an MRI of her spine and brain next week .  She has been having a lot of headaches and pain in her back lately .  Because of her hemi vertebrae, butterfly vertebrae, cervical fusion , scoloiosis and abnormal anatamy , headaches and back pain are all something she has become accustomed to living with .  But lately they have really started to bother her.  (She is someone that  NEVER complains.)  So she will be having a few test done to make sure all is well in her little body .

November is proving to be a very busy month already . Praying for the strength to get through it and the peace to be able to enjoy Christmas together as a family .

Do you believe in MIRACLES  ?  We do !

Pre Hurricane Party

Having fun with the Bartlinski Bunch !

Tomorrow we have a hurricane headed our way  so today we decided to have a pre hurricane party . Grace spent the day competing in her first IEA  ( Interscholastic Equestrian Association )  team competition in Washington so the little girls and I stayed home and had fun .  We made Mickey cinnamon apple pancakes for breakfast , then headed outside and played in the leaves and tonight we carved our pumpkins .  
We  are praying we do not lose power for too long.  We have enough extra oxygen for three days and  all of Gemma's meds. are being delivered early tomorrow morning . So we should be set .
The one huge fear is if Teresa should be called for a heart on Monday or Tuesday .   The storm is going to run along 95 from Baltimore to Philly .  This is our direct route to CHOP.

Today we decide  not to worry about anything and just have fun !