Home Sweet Home

So happy to be home!!!!!!!

Just trying to get adjusted to yet another change in our life ...oxygen and pulse oximeter.

Teresa continues to improve a little each day . She is so happy to be home.

Telling the nurse how to do it !

Tuesday

Teresa had a pretty good day today. She was able to go to the play room and make a pumpkin.
Her oxygen levels stayed stable At 76 while she was in bed , in the play room 62 and running down the hall ... 53!
She had to lay Down and catch her breath .
So tomorrow we are going home !!!!!!
Her oxygen and pulse oxymeter will be delivered tommorrow to home and the hospital .
We will find out tomorrow also what our insurance will pay for her medicine( sildenefil... Yes , Viagra ).
We are so happy to finally be leaving.

Monday

We are still here. This morning Teresa 's oxygen level was still too low and her lungs not clear enough so here we are .
It was suggested tha t maybe we should start to think about a grant a wish for her . I thought wow we get to have a wish come true? My wish is ... When can it come true ?

So their thought was if she became this sick from a cold and having so much trouble getting back to her base line, then the next infection could cause more trouble and lower her base line even more. They suggest not waiting too long . Not the news we wanted to hear.

Praying even harder for that miracle!

Feeling better

Feeling better.
The photo of Teresa in the orange shirt is from a few days ago when she was very sick. The one in the wagon was from today feeling much better!

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.