Sunday

Teresa's light is shining bright!
It was diminished for a while but is back on full force. She is feeling much better. Thank you everyone for praying for her !

She had another good night and today she is feeling much better. Her oxygen is still low but she is regaining her strength slowly. As long as she is in bed and resting her oxygen levels are good ( well not great but good for her, 77). She was aloud out of bed for a few minutes in the wagon but her oxygen level dropped to 55(yikes) even while on oxygen. She appeared as if she was going to pass out so she had to return to bed and rest. She was not happy about this because she was ready to play .

The Doctors would like her level to stay between 75-85, with 85 being optimal. We will be home as soon as home health care is set up and our insurance OKs coverage of her med. This hopefully will be Monday or Tuesday. Keeping her resting and not trying to keep up with her sisters is going to be difficult.

The common cold is what caused all of this trouble in her little body . I am a little nervous what the flu or any thing else might do to her.

Petrie- yes it is OK to post about Teresa and ask for prayers.

Saturday

Last night was better. She slept through the night with only a few desaturations below 60. Teresa is still on a high flow of oxygen and does not have the energy to move around too much . Just getting up to use the bed pan makes her levels drop below 60. She is eating a little and is drinking pretty well. From Wed. to Thursday she gained almost 2 pounds in fluid. Tonight when she was weighed she was back to her normal weight . She is improving very slowly but at this point any improvement is great news . I'll take it. We are hoping she will be able to return to her baseline before she became sick and that her tricuspid valve does not continue to leak so badly .
The plan now is to get her oxygen above 75, have her lungs free of fluid , tricuspid valve to stop leaking soooo much and to start her on the new medicine to help her breath better and not to be so blue. When this happens she can come home on oxygen and a monitor.

The Doctors are hopeful the medicine will lower her pulmonary pressure maybe just a little . The one Doctor kept saying he didn't want us to have false hope because it might not work . I told him that he did not know Teresa , she is surrounded by so many miracles already , that we were VERY optimistic in this medicine completely lowering her pulmonary pressure back to normal and then to be able to receive the heart transplant. He looked at me like ...well OK , i don't really care what it was he was thinking of this plan because I know God is capable of this plan and so is Teresa. She is a survivor, fighter and a perfect little angel with such a will to live .

Sylvia

Sylvia, Please email me. I would love to talk to you .
mykidsmom1986@yahoo.com

Friday

Last night was very scary. At 11pm, Teresa's breathing was still deteriorating so she went down to get her third xray within 24 hours. I had no idea that her lungs could fill with fluid this fast . Just hours before, the second xray showed her lungs were clear, now they showed...progressive cardiomegaly and pulmonary vascular congestion with evidence of worsening congestive heart failure. At 1;30 her sats. dropped into the 50's and she was really struggling to breath even with oxygen , nebulizers and lasix. she finally stabilized and was able to get a Little sleep.

This morning she looked a little better but every time she moved or sat up her sats went back to 63.

Thank you for praying .
Praying for an easier night of breathing and no more damage to her heart or lungs.

Thursday

Teresa had a great night . The day was not so good. Oxygen Sats dropped all day even On oxygen. Another chest x Ray and another echo showed her valve in her heart that was already leaking was leaking even more . With any movement at all she has a lot of difficulty breathing . Please keep praying for her little heart to get stronger and her breathing to be easier.

hospital

Teresa is in the hospital, please pray for a very quick and full recovery .

Monday she started sneezing a lot . By Tuesday night she had a 103 fever and very labored breathing. I was up all night holding her sitting up because this was the only way she found a little relief. By Wed. morning she was shaking with chills and her fever only came down to 102.5 . Gemma was scheduled for her blood transfusion today , so I had to reschedule that until Friday . We went to the ER and she was immediately given oxygen , she was down to 63. She was started on IV antibiotics and was moved to the IMCU floor for very close monitoring. We are now waiting for her blood cultures to come back to see how aggressively the infection needs to be treated. This afternoon , she is starting to feel a little better, I think the oxygen is really helping her to breath better and has brought her stats up to 78.

She has been through so much but she still has her magical personality ... helping the nurses , showing them where to put everything and telling them to only take a little blood.

Please pray for her to have peace and not to be so scared. She really is trying to be so brave, even in so much pain.

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.

Gemma's Transfusion

This is how Gemma feels before she needs a blood transfusion. She usually receives her transfusion every 3 weeks but her Doctor's want to see if her body can start to handle every 4 weeks . With every transfusion comes a build up of excess iron that is stored by the body in the liver . She has been taking chelation medicine for 8 months to remove the iron but so far it is not working too well. Normal ferritin levels are 10-300, hers are over 3,000. Hopefully her numbers will all be good when she goes in on Wed. for her next transfusion.

3 Months !!!

It has been 3 months since we adopted Teresa in China. I can not believe it . It seems like she has always been a part of our family .

On Monday we head up to Philly to get a second opinion . We are really hoping to get some good news.

Teresa can now speak almost perfect English . She is using 3 word sentences and can say perfectly " Mommy I love you " " Babba I love you " " Where is Grandpop? Fang Fang want see Grandpop. Pleeeeeaaaase" , also "Touchdown Ravens!!!" . She chatters non stop and continues to love her best friend , Gemma. The two of them have the funniest conversations . Gemma can not speak because of her speech disorder , but Teresa and her carry on a wonderful conversation between the two of them that only they can understand.

Praying for good news Monday !!!!

Eternity

Eternity ...a VERY long time.

Before and After

These are photos of Emilia's legs before surgery and after. Three years ago when we adopted her she could not walk , her one leg was bent backwards and her other leg was missing most of the bones . She had osteomyelitis in the orphanage and it spread quickly to her legs and arms. Both of her legs and one arm have been completely rebuilt. She can now stand and walk however her one leg does not bend (because it is fused and the other has limited mobility) . She always has a smile on her face and her only request was to be able to ride a bike. On November 30 th. she will have the fixator removed from her leg. She still requires several more operations on her legs and arms as she grows but look how far she has come. She is our bionic little girl with one amazing personality . She doesn't let anything stop her.

Cautious Optimism

Saturday we had a beautiful fall day at the Apple Festival in Biglersville Pa.. We had delicious apple pie, apple ice cream ,apple pizza, apple sauce , caramel apples,baked apples...
Teresa and Gemma had a wonderful time experiencing a hay ride and making a scare crow for the first time.
We always have such a nice time at this festival . We starting going to it years ago when the boys were little and now it has become an annual event we share in with the girls too.

Today Teresa had an appointment at Hopkins for an abdominal ultra sound . Her Doctor wanted to make sure she had all of her internal organs. Everything looked good except for her liver , it was VERY enlarged.

Thank you to everyone who has sent me information on Hospitals that might offer hope for Teresa's Heart.

We have emailed several Hospitals Teresa's medical information . On Monday October 18 we will head up to Childrens Hospital of Philadelphia (CHOP), to have a second opinion . CHOP has a Doctor that specializes in Hypoplastic Left Heart Syndrome. After speaking with their support team , we are cautiously optimistic about receiving some kind of good news. We are hoping they will tell us something other than "Take her home ...nothing can be done"

We are waiting to hear back from Boston and the Mayo Clinic.

Life is starting to get back into some sort of normalcy . We still have our good days and not so good days but the bad days are getting easier ...I think.

Teresa Update

Teresa was adopted in China on July 13, 2010. On July 22, 2010 she became an American Citizen. We were not sure she would survive the 15 hour flight home , but she did. We have been home for 2 months and 6 days and Teresa is doing great. She has bonded with everyone and loves experiencing something new every day . She has gained 3 pounds and is getting stronger every day . We still closely monitor her vitals and limit her physical activity . She has trouble playing outside for longer than 15 minutes because it becomes too physically exhausting for her. We also must carry her up and down the steps because this causes her to have difficulty breathing.

Last week we met with Teresa's Cardiologist and discussed her long term care. The team felt if they tried one procedure it would cause a different problem to occur. If the pulmonary band was tightened it would help to save her lungs but would cause ... If the pulmonary band was loosened it would help her to breath better but would cause ... If the enormous Hole in her heart was closed it would cause... and she might not survive the surgery . None of these procedures would FIX her heart only cause different problems. The only FIX is to have a heart transplant, but this can not happen because of her damaged lungs. So their solution ... do nothing and pray she does not get a virus or infection because then she would ... With the flu season starting , we have become more protective of where we will take her . We will ALL get the flu shot this year.


Yesterday we had an appointment with our most favorite Doctor in the world, Dr. H. F. (genetics, she is also Lucy's Genetics Doctor ). She will be doing several genetics test on Teresa . She also is going to search her enormous data base of Doctors around the world for someone that might be able to offer some hope for Teresa's heart.

We are praying for GOD to lead us to make the right decisions for Teresa.


(P.S. Ming Ming is on the shared list that just came out and BAAS has pulled her file for their agency . You may still request her file from them if you are with another agency .Her "special need"... she is a beautiful 4 year old girl who really wants a Mommy and who just happens to have a complicated CHD. If we had the money we would adopt her. )

red thread stitches

Thank you Robin for these beautiful outfits for the girls !!
Please go check out Robins site if you would like to order these skirts.
She hand sews all of these amazing creations as a fundraiser to help bring her beautiful daughter home from China.

www.redthreadstitches.com

Grace ,Mary , Lucy , Emilia, Gemma and Teresa say "THANK YOU"

Mary

For the past week Mary has been very quiet and would start to cry at the drop of a hat. I've asked her if she felt OK, had a bad day in school, too much homework , anything I could think of that might be bothering her. Nothing!
The other night at dinner, Grace was giving her a hard time about lifting the headstone off of my leg saying, "Your not that strong... You couldn't lift that... I don't believe you ..."(the tombstone is 4x4 and solid marble) , and Mary just sat there and didn't say anything . I told Grace to stop and leave her alone... Then Mary looked up and said something , but no one could hear what she said , so Grace said" speak up if you want to say something " ( Grace is only 11, but boy has that teenage attitude started already!)
Mary said " I didn't lift it , Jesus did".
Well that shut Grace up, she didn't say another word.
After dinner I took Mary in the other room so I could talk to her alone and ask her what had happened . She said after she handed me the cell phone , I called 911 and while I was talking to the operator , Jesus came to her and told her to go back over to the headstone and HE would help her to lift it. She said OK and went over and lifted it with Jesus and then said Thank you . My Leg came out and she ran over to
me.
It took her almost a week of holding this all inside to tell us what had happened. She wasn't scared, just upset that I was hurt and not sure if she should tell anyone what had happened.
I wasn't quite sure what to say to her except, "Thank you Mary for helping me and Thank you for helping Jesus, you are very special and always have been. "

What do you see?

What do you see on this apple? ...

A heart for Teresa!
Thank you to The W Family!


Teresa is having a great week.

Mary, my HERO

Yesterday the little girls and I went to my Mothers cemetery to do some weeding and put out the fall flowers. When we arrived I noticed the headstone looked tilted forward just a little . The lawn mowers had knocked the flower pot on the one side off and dented it. Not thinking much of it , we started pulling weeds and found a cute little woolly caterpillar. Lucy and i were kneeling down in front of the headstone looking at it and Mary came around from the back and before I new it the headstone had fallen forward and my leg was wedged under it. Mary got on one side and Lucy on the other and tried to lift it. After 5 minute with no luck moving it the pain became excruciating.(I had put a border of bricks and stones around the headstone and my leg was crushed between the headstone and the bricks). Mary became hysterical and Lucy ran to the car to hide .I told Mary to run back to the car to get my phone so I could call 911. While talking to the operator Mary went over to the headstone and LIFTED THE 500 pound (well that is what it felt like) HEADSTONE OFF MY LEG ALL BY HER SELF!!!

When my brother arrived to retrieve my shoe , he could not lift the headstone himself.

After spending 6 hours in the ER , the good news is no broken bones(I guess it's good to have fat legs ), but the tendon and muscle were crushed. Crutches,air boot and pain meds. and home we went.

We are so thankful that it did not fall one one of the girls. Lucy had stood up 2 seconds before it fell . Her head would have been crushed .

Before my Mother died , she told me something that I have never forgotten. A few days before she died she said an Angel from GOD had come to talk to her . HE said to tell us that everything would always be alright.
As I was laying there I was thinking "Mom everything is not alright" and then Mary somehow found the strength to lift the headstone.
Thanks Mom!

Flashes of Hope

Today we went to Johns Hopkins Hospital to participate in Flashes Of Hope. Flashes of Hope is a non profit organization that creates uplifting portraits of children fighting life threatening illnesses. Gemma and Teresa were invited to participate .

What started out as a nice day soon turned into a day filled with uncertainty .When we arrived at the hospital we were told we could not leave the garage because the hospital was on lock down. After 30 minutes we were aloud to enter the hospital. There were police everywhere and the halls were completely empty. Once in the room we were told the hospital was on lock down AGAIN . There was a shooting on floor 8 and we were on floor 9 and the suspect had not been apprehended. A young man had entered the hospital and was not happy with his mothers care , went up to her room and shot the doctor . From there the story became a little confusing . Some said he took the mother hostage and then shot her and himself. This is still unclear. But during this entire time the girls were having their photos taken and unaware of anything else going on . Since we were on lock down for a long time , the photographer just kept taking photos of the girls . He must of taken over 100 photos.
I had dressed the girls in coordinating colors but soon found out that the photos would be taken in black and white . Oh well , they looked cute anyway.

After several hours we were allowed to leave the hospital.
I wish I could say a fun day was had by all , well for the girls it was fun . They even had their makeup done( Lip gloss) ,which they just loved ! For Ed and I it was a little unnerving , but we made it home safely !

2 months!!!!

On July 13, 2010 , Liu Fang became a Bartlinski ! Teresa Caroline Bartlinski (Fang Fang - pronounced Fahng).

It has been a wonderful 2 months.!!! How lucky we are to have such a sweet sweet daughter !

The Ravens outfits are to make Daddy happy , as if you couldn't tell he is a HUGE Ravens Fan. Today was their first game.

Thank you

Thank you ! For all the kind words and encouragement for our family . I am deeply touched by your support. I am not sure how to respond to the comment section of our blog ( I am sure my son will be able to tell me ) but I wanted to let everyone know how much your comments seem to come at just the right time , when we are having a bad day .

Yes , I know our miracle has already happened. Just having Teresa in our family and here with us . She is so happy .

I thought I would post Teresa's Heart condition for those who may not know and also in case anyone might hear of a Hospital anywhere that might offer some hope.

Left Hypoplastic Heart syndrome
She had pulmonary banding done in China ,but done too late and her pulmonary pressure is EXTREMELY HIGH , and her lungs are very damaged. Her oxygen level hangs around 70 when she is not playing and dips to the low 60's when running around. She can not have oxygen because this would defeat the whole purpose of the pulmonary band . The doctor said it would only be given when she dips below 60.
Mitral atresia
Double outlet right ventricle
Ventricular septal defect
Atrial septal defect
Severe tricuspid regurgitation


Saying " Thank you " doesn't seem like enough but I can not tell you how much we appreciate all of your prayers for Teresa.

Doing well

Teresa is doing so well. Thank you everyone for all of your prayers for her !
She continues to adjust so well to everyone and everything. Gemma and Teresa have become best friends. (they are just 3 months apart in age ) . They play together so well. Whenever they are apart they are so lonely , as soon as they are together again they hug each other like they have been apart forever.
Eating is still a challenge. Teresa is a picky eater with no appetite.
Sleeping has never been a problem ,she usually sleeps from 9-10. Before she falls asleep she serenades us with her favorite songs (sung in Chinese) and then she tries to sing her new songs in English. We have her sleeping in a pack and play in our bedroom for now so we can keep a closer watch on her at night. She also MUST kiss and hug everyone before going to sleep(even if one of the girls is already asleep ,she tip toes in their room and quietly kisses and hugs them ). When she wakes in the morning she is just as sweet. She will stand up and say "Hi Mama I love you" and give me the biggest hug.
Her transition to our family continues to amaze me. She is so happy and in love with everyone. She has not had any bonding problems or grieving. It's like she has always been a part of us .
To look at her you would not believe her heart is so ill. I have been trying to educate myself as much as possible on her condition. Everything I read always ends the same, "This condition is fatal". I am not ready to accept that. I keep trying to find a cure,a fix or solution for her heart, reading more literature , studying different procedures ,anything to make her live longer. Then I realized what I was doing. I was trying to control GODS plan for her life. It was going to be the ending that I wanted and I was going to find a way to save her. Teresa's entire life has been in GODS hands since she was born . She should have died shortly after birth , but she didn't . She will be 4 on Christmas day , her heart should not still be beating , but it is . Not by my doing but by GODS.

How do you prepare to welcome a child into your family knowing you will love them instantaneously , unconditionally forever and then at the same time accept that you must let them go ?
I struggle with this everyday .

We are still learning to take life one day at a time.

Apples

Monday was such a beautiful day , we decided to go to Baughers Farm and pick apples.
Paul was home from school for the weekend so he came with us along with Meg (his wonderful girlfriend , the girls love her). Not only did we all have fun but the girls loved learning about the different kind of apples and all the different recipes apples can make.

Best Friends