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!

Monday, October 18, 2010

CHOP

We had a wonderful experience at CHOP today. We did not receive the news that we longed for but we received a little bit of HOPE . Life is very hard with out hope.

After having a very detailed heart echo for 1 1/2 hours, we spent the next 2 hours having a very detailed discussion with Dr. Rychik and his nurse in charge of the Single Ventricle Survivorship Program ( she is an angel sent from God to help us!). They went over every detail of Teresa's heart , from the time she was born ,to the surgery she had in China to how her heart is functioning today . They explained her heart to us in such detail that I finally feel at peace. Peace in knowing we have done everything we could here on earth for her. There is no other hospital , Doctor or magic cure that can save Teresa's heart. Her heart is so unbelievably deformed and her lungs have become so irreversibly damaged that only GOD can save her now. If she had been born in this country she would have received life saving surgery right after birth to repair her heart and her lungs would never have become so damaged . But she wasn't born here she was born in China, an orphan. Life is so unfair to some.

I am not mad at China or the wonderful people of China ( I love this country , it has given me 5 amazing daughters!) I am almost afraid to write who I am mad at ...
GOD. How could He have created her this way knowing the pain and suffering she would have to endure? I know GOD is looking at life from eternity and I am looking at life from here and now. I want Teresa to live like every other child and not to have so much pain and suffering. I want her to be able to go to school , graduate from kindergarten , run and play with out turning blue and experience all the fun of just being a child . Everything that comes for granted to so many .

The hope that CHOP gave us... to start Teresa on a new medicine that could possibly lower her pulmonary pressure a little , stop some of the damage from continuing in her lungs and help her to breath a little easier . Her oxygen was 66 today ( this is becoming extremely dangerously low and oxygen only helps to bring it up a little. She is slowly suffocating ).
The new medicine is VERY expensive ( $1,ooo dollars a month ) and not covered by insurance. The Doctor is going to make a special appeal to our insurance to see if they will cover the cost. We are praying that it is covered.

Dr. Rychik also agreed with the Doctors at Hopkins in that he does not recommend any surgery . He feels she would not survive any attempt to correct one or two of the many defects her heart holds. He said it was a miracle she survived birth .

He estimated her life expectancy of maybe 3 years. ( that is as long as she does not get pneumonia, the flu , any virus or a cold). She is also at high risk for a stroke.

This little girl has been such a blessing to us . Our life is so changed now, not in a bad way , just a different way forever. We see so much in a different light . Things that use to be important aren't. Life has taken on a totally different meaning... to help one little angel sent from GOD to know the love of her own family . I hope for a very LONG time. Just waiting for GOD to agree with me.

12 comments:

Rita and John said...

We were hoping for different news too, of course, but you sound at peace in some ways to understand Teresa's heart better. It sounds as if she has had so many miracles in her life--to survive birth, to become a member of her forever family...maybe God has another miracle waiting for her and for all of you. We are praying hard for her and her family.

Mandie said...

Praying for you all. I wish I had wonderful words to share. I am praying that God has a miracle for her but I know in my heart that you are a miracle for her. She has been blessed with a beautiful forever family.

Faith, Hope, and Love said...

Ann,

I'm not sure what to say... the tears are flowing...

I will continue to pray for Teresa. I will continue to be grateful for your family...who has brought Teresa so much joy. I do believe that God has a plan and sometimes it is more than we can begin to understand...especially when it involves a child that must suffer...a little one that we have come to love so dearly.

Love and hugs to you!
Robin

Annie said...

Oh my. I wish I could say something to make it all right, but I can't. I do know, however, that God has a plan for Teresa and it may just be the miracle we are all praying for, it may not be but He is holding her and watching over her. He brought her into the world against all odds and brought her to your family, against all odds. He did this all for a reason and you may not know now or even 3 years from now, the why's but He had His reasons. As hard as this is, I know you could never imagine not ever loving Teresa, not ever being blessed by her sweet spirit and now, she has known the love of a family, a wonderful family. Please know that I pray for your sweet child every single night and I will continue to pray for that miracle for her and for continued strength and courage and peace for your family. You are amazing!!

Reena said...

Many prayers for Teresa and your family-- that God has more miracles waiting for all of you.

Amy Murphy said...

OH! This post made me cry! I will pray for Teresa's healing; it may be that God has another miracle in store for her. Also praying that the insurance will pay for the medicine.

Carr Family said...

Ann,
Years ago when I was so angry at God yet afraid to admit it a pastor I barely knew kept coming to mind and that I needed to call him. When I finally did and explained all that was happening his first words were "wow you must really be angry at God". I cried realizing the Lord knew my struggles and was giving me the okay to express. This pastor encouraged me to read Habakkuk. Lay your frustrations with the Lord and let Him help to lead and comfort you and your family as you do such an incredible job with every precious child you've been trusted with. Are putting a picture on our fridge of your family to remind us to pray even more for God's hand of healing.

Updated by Lila Huggins (grandmother) said...

I've been following your blog since you adopted "Lucy" I first fell in love with her on Robin's blog. I've been praying for her ever since. She's such a treasure!! Thank you so much for keeping those of us that love her, up-to-date on her health!
I'm currently undergoing chemo and then surgery for my second round of breast cancer. At times I find myself feeling sad and mad and "why me"? Then I think about Teresa and Robin's Mia and Liliana and these precious ones give me courage!
God bless you all!
Miss Lila in Atlanta

shelley said...

I believe God put her here to show us how horrible life can be.....but when you trust in him(grossly apparent in Teresa's smile) he will truly heal us all.

She has been such an adorable icon for so many people. How we ALL wanted her to come to know a loving family....how the sweet Lord provided that!!! We saw her travel home and be accepted by sisters and brothers and to know Jesus!!! She glows through the pictures that you so lovingly take. I can't even her radiance in person!! Please know that your heart inspires me to open and love more openly. Thank you for that. We will continue to pray for continued comfort for our little sweetie.

Thank you for sharing her with us....

Aus said...

Ann - there are no words that anyone can say to a parent at a time like this - and even those of us with sn kids who have had these kind of diagnoses can still only guess at the depth of the pain that you and your family feel....

But if it lends any comfort in regard to your anger with the Father, know that Teresa has touched so many people and families. Know that your family and your strength to accept Teresa with love as your child regardless of what the future holds has opened the hearts of many who were just 'afraid' to adopt a special needs child.

From outside looking in - I believe that this was Teresa's calling - her mission here on earth.

We will hold Teresa and you guys in our hearts and prayers -

hugs - aus and co.

Hali said...

Hello,

We have been following Teresa's story since she was still in the orphanage. I am sorry about your recent news, but I know miracles can happen any time, any place. If it isn't God's will for a miracle to occur, do you know that you have made this child's life so happy now she has her own family. Even if her time with you is not as long as we would like it to be, at least she is very happy.

Your family brought this beautiful child home when others had given up hope or were just unable to do so. Her life and yours is so much better now that God brought you all together a family. Your comment about eternity was very profound. Always remember, no matter if we are all together a year, or 40 years, we will all be together for eternity soon.

We will continue to pray for a miracle.

God Bless,

Lee Ann

roomforatleastonemore said...

I am so sorry. I have been angry at God too lately for very different reasons, but you know what as you share that feeling, you are releasing more of the burden of wanting something so much and not understanding why HE won't act.

I don't understand it either. I KNOW as you do and so many other believe that He could absolutely perfect her heart right here and now.

Still praying for that miracle and SO VERY THANKFUL Teresa has you as her Mommy.