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 !

Getting Closer

Today we found out  Teresa had been offered a heart but her Doctors had to turn it down because they felt the heart was not  a good match for Teresa .  Because of her pulmonary hypertension  she will need a very strong heart that can beat against the high  pressure .
 So we continue to wait.
 
We are now visiting CHOP every week for check ups.  Todays visit did not help to alleviate any of my fears .  Teresa's heart continues to deteriorate . She also has a very minor cold ( actually just a slight stuffy nose and minor occasional cough ) but it is affecting her O2 levels and causing her to retain too much fluid .

On days like this it is hard to wait .  Her little body is getting very tired .  As she lays here sleeping next to me I am filled with so many emotions , mostly fear .   How do you prepare for a surgery that could take her life  BUT at the same time  is the only chance to give her life ?

Teresa's favorite saying is " I love you more ".   This is our daily ritual filled with  hugs and kisses.  As I say " I love you " , she always says  , " but I love you more" .

Happy Fall!

Our family has been  blessed to have so many wonderful organizations  be a part of our journey .

This weekend  we were treated to a fun day at the pumpkin patch by a local Foundation  that helps to make the lives of children with severe health issues a little bit happier.   Casey Cares Foundation   was started by a very loving woman who lives locally in our community . This weekend we had the privilege of meeting her and "Thanking " her personally for giving Teresa and Gemma  so much happiness.   They really  love looking forward to the fun activities that Casey Cares offers them .   Just another angel sent to help us on this journey . 

This weekend we also became "Official "   Donate Life Ambassadors.   (Really just a big name that means we are volunteering at The Living Legacy Foundation of Maryland .)  Last weekend we were all filmed to help tell Teresa's story .  The hope is that people will see how VERY inportant organ donation is and how many lives can be saved .   I was shocked to learn that only 43% of people in our state are  organ donors.   Nine lives can be saved by one persons donation .  But sadly 18 people will die tomorrow waiting for a second chance at life  and 115 people will be added to the waiting list just tomorrow alone !
So since organ donation is such a huge part of our life we wanted to do something to help bring more awareness to this tremendous need  . Please consider becoming an organ donor .

Teresa continues to wait for her second chance at life .  The stories of the families who have donated life are just incredible . They are all amazing people .

We continue to try and get things in order for this next phase of our journey .  A lot of things are falling into place but there is still so much more that needs to happen that only God can orchistrate.
We are so grateful to everyone for lifting our family up in prayer .  We can definitely  feel the love .

1A

Teresa's monthly visit to CHOP on Monday was not good .
For  the past few weeks we noticed her breathing was more labored with very little activity .  We attributed it to school starting and being a little tired from the change in routine.  Dr. Hanna thought otherwise  .  Her Oxygen dropped into the 30's for her stress test, blood pressure was extremely high and her heart rate was too high .  He said we really could not blame it on school .  Her heart and lungs are deteriorating more.

The new plan ... she can not come off of her oxygen for even 5 minutes. ( we were not putting it on her while she was riding in the car or laying down watching TV ) But he said this was too dangerous . She also is being moved up on the transplant waiting  list to a 1A status ( she was 1B).   This means she could receive a heart VERY soon . 

Needless to say we are feeling very overwhelmed at this moment .
Emilia has an upcoming surgery in November , Mayzie is still limping and  we are still trying to get plans worked out for the care of the girls while I am  gone .
I have to admit I still hear in the back of my head  all of the Doctors who said this would never happen . That Teresa would never be a candidate for a Heart transplant . All I hear is them repeatedly saying she would not survive it .
So after having a panic attack , I took a deep breath  , calmed down and listened to Ed . He has complete faith that Teresa will be OK.  I on the other hand am still a complete wreck.  

When I step back and look at what God has done in Teresa's life already , I have to admit that her life is a miracle from the moment she survived birth with half a heart , survived 2 years in an orphanage  , survived the flight home and  survived 2 years waiting to be listed for a heart .  She is a miracle already .  God has taken a tiny little orphan girl with enough spunk , personality and determination to move mountains . And look out because she knows when she gets her new heart she will be the BOSS.  ( she loves to be the boss).  We told her that she will be able to BOSS her lungs and new heart to be healthy and strong . ( she is still considered to be extremely high risk for a heart transplant because of the high pressure in her lungs .  The fear is the new heart will not be able to pump against the pressure in her lungs and cause the left ventricle to tank . This is why I am a nervous wreck ). 

WE could really use prayers for peace right now . We also are praying for God to provide the means to care for the girls. But mostly we are praying that Teresa's heart and lungs do not continue to deteriorate .
Thank you all for joining us in these prayers !