What a Week !

I have to say , I am soooo glad last week is over !
Everyone is home from the hospital and feeling great. Gemma has returned to school, Mary had all her bandages changed and we had a glimpse of her new nose . She couldn't wait to see it, although it is still very swollen , she loves it !
Gemma had her blood transfusion while she was in the hospital , so she is good to go for another 3 weeks.
Teresa has miraculously managed to avoid the pneumonia that Gemma had. How , I do not know being that they share EVERYTHING and are inseparable.

Thank you to Casey Cares foundation , the girls enjoyed a Princess Tea Party at the Ronald McDonald House with Princess Tiana and tickets to Disney on Ice !

Teresa has yet to start all of her new meds. because her new Doctor (the one in charge of Pulmonary Hypertension at CHOP , who by the way we LOVE) , decided to take a 2 week vacation . I hope he comes back very rested and ready to go because we are very anxious to have her listed for a heart transplant. I never thought this would be a reality for her . Although I have always had complete faith that God would work miracles in her life ( and already has) , it is now a bit surreal. We return to CHOP on November 18th. and I have this fear they will say "we made a mistake, she is still inoperable.No Heart transplant."

Thank you to everyone who helped to pray for the girls this past week ,as always it never goes unappreciated ! So grateful to you all!

Home and Back

Mary had a great night and was feeling so much better this morning she was allowed to come home. Unfortunately when we arrived home , Gemma was still VERY sick . So back top Hopkins I went with Gemma. Oxygen , fluids, 2 I.V. antibiotics and hopefully this will knock this nasty virus out. When her fever is gone and she is feeling better she will get her blood transfusion . Back to the same floor I had just left with Mary.
Then this afternoon Ed calls to tell me that Mary has started throwing up again . So I call her Doctor who calls in an anti nausea med. to the pharmacy with the hope that this will stop the vomiting. No luck , she can not even keep the medicine down. SOOO , Ed is now on HIS way to Hopkins with Mary to have her readmitted ! Unbelievable, the only thing that can make this day worse if for Grandmom to call and say Teresa has a fever and is sick .
Trying to figure out how to be in 2 hospital rooms at the same time with 2 sick kiddos. Ed will have to go home and be with Teresa tonight because she has too many meds. she has to take before going to bed and oxygen .
Praying for Mary and Gemma to feel better, Teresa to some how avoid all these viruses and the strength to make it through yet another sleepless night .

long night

Mary did not have a good night, vomiting, nausea, itching and pain. After throwing up every 30 minutes all night , by 3:00a.m. , we had had it. It was time for a change. The Doctors finally agreed to add new meds. and by 4:00a.m. she finally had some relief. Two hours of sleep and up again for 6:00a.m. rounds. What a night !

Grandmom has been holding down the fort on the home front. Poor Gemma started getting sick a few days ago and now has Pneumonia. That along with her hemoglobin being low has left her feeling miserable .

Wish I could be two places at once.

Mary update

Mary's surgery went great ! Still trying to get her nausea and pain under control.
Thank you for praying for our sweet Mary !!!!!

Mary

Mary's surgery started around 1 and should be over around 5:30.
So far the update is everything is going as planned.
She was so peaceful all day , almost excited to get it over with . She was very brave .

Our House

We are getting ready for another busy week in "Our House".
Ed and I continue to process all the new information for Teresa's heart . It is so nice to finally have an option , but with it comes so much to take in and consider. Our life is getting ready to go on another amazing journey filled with hope and fear at the same time. I pray we will make the right choices for Teresa's life, for Gods will to be done .

On Thursday , Mary will have a major surgery to repair her cleft palate and nose. She should be home hopefully in three days without any complications. She is actually looking forward to the surgery because she wants so badly to have a nose that looks "normal". I am really going to miss kissing her little crooked nose . I think she is so beautiful just the way she is .

Unfortunately Gemma's blood transfusion had to be bumped back a week because of Mary's surgery and several Doctors appointments for Teresa this week . She is already showing signs of her hemoglobin being low but her Doctors do not feel it will harm her to go one more week . She is VERY tired , but still eating just fine.

Thank you for continuing to pray for Teresa and we would be very grateful if you would also include prayers for Gemma and Mary .

Miracle in progress

Miracle- derived from the old Latin word miraculum meaning "something wonderful", is a striking interposition of divine intervention by a supernatural being in the universe by which the ordinary course and operation of nature is overruled, suspended, or modified.

Teresa's diagnosis- Hypoplastic left heart syndrome variant with mitral atresia, large muscular ventricular septal defects, dysplastic tricuspid valve , significant pulmonary vasculature disease, eisinmengers and moderate failure to thrive.

What we have heard from The Doctors for over the past year -"We discussed with the parents that Teresa has severe pulmonary vascular disease in association with complex single ventricle heart disease and most likely this will not be reversible". We continue to believe she is not a candidate for a Fontan .Transplantation could be considered but it would have to be for a heart/lung transplant for which outcomes are not ideal. " Revatio seems to have helped minimally , although we continue to not want to offer any false hope to the family ". "Maintain wellness for as long as possible". "She did not receive medical care soon enough ". "Too late ", "Her reserve is too low", "No hope", "Inoperable" , "Non reactive to oxygen or nitric oxide".

After over a year of NO HOPE , today, WE HAVE HOPE !!!
Is this a miracle ? To us ,YES !

Her Cath. showed that her lungs were now responsive to oxygen and nitric oxide. One year ago they were not . For the first time EVER we heard ... "We have good news". What? Did you hear that right ? Did you hear what he just said ? Ed and I looked at each other in disbelief. How could this be after so much bad news with no hope? The heart Cath . Doctor came out after the procedure and said " There is good news, her numbers have all improved" . Ed and I were a little confused , not sure what to make of it . As Teresa was recovering , her Cardiologist came to speak with us . He said we have great news , we now can start to discuss options. Ed and I became even more confused . What options ? We have NEVER had options. Dr. R. said he was going to have us meet with the head of the transplant team who was "The Specialist " for pulmonary hypertension . Because her lungs showed signs of being reactive to oxygen and nitric oxide there is hope that with more intense medical treatment, within A YEAR she could be listed for a heart transplant . Yes, a heart transplant , not heart/lung transplant just HEART! The survival rate for just a Heart transplant is great.

Today before leaving the hospital we met Dr. Hanna, Director of Pulmonary Hypertension. He was phenomenal. He offered so much hope . He feels that with an increase in her medicines , adding several different medicines, the use of night time oxygen ,getting her to increase her weight and keeping her away from ALL viruses , her lungs will be able to tolerate a heart transplant. The next year will require a lot of visits back and forth to CHOP to monitor the effects the medicines are having . There are a lot of side effects associated with the new meds. and she will have to be monitored closely for potentially dangerous effects.

Ed and I are feeling a little overwhelmed with everything right now. We have prayed so hard for a year for a miracle for Teresa's lungs to be healed so she could receive a transplant . WE are giving all glory and honor to GOD for this miracle. We are so grateful to EVERYONE for praying along with us for Teresa's miracle. So many people from all over the WORLD have prayed for her. She has touched so many lives and in turn you have ALL touched her life .

God has moved so many mountains already in Teresa's life . Our family is now faced with so many more mountains that need to be moved for the transplant to take place. We are praying our insurance will cover the transplant and all of the continued medical care . We are also praying for help with the girls while I am in the hospital in Philly for weeks , possibly months with Teresa. We would need a full time nanny , one that is capable of taking Gemma for her blood transfusions and daily infusions. Financially this is a huge mountain . I know GOD would not heal Teresa's lungs and not provide a way to help us with the care of all of the girls.

We are in awe at Gods love and mercy for Teresa and the power of prayer.
Thank you so much to everyone for helping us on this amazing journey of Teresa's life.

Wishing, Hoping and Praying

Thank you everyone for your encouragement, love, support and most importantly your prayers. We truly could not handle this journey with out it. And Robin , Thank you for helping me to remember , no prognosis can override Gods plans !

Teresa has packed her favorite princess sparkly slippers to take with her Friday to Philadelphia. Friday morning at 10 am. she will have her heart cath. . The doctors have all said it would take a miracle for her pulmonary pressure to be lowered. Last year , her heart cath. was very dismal. The results left no hope for a future. We are praying for no complications ( she could have a heart attack or stroke during the procedure)and for the surgeons hands to be guided by God. We are praying for her pulmonary pressure to be lowered, her severe tricuspid regurgitation to be healed and for her lungs to respond to oxygen .
She will spend one night in the ICU and hopefully we will be home by Saturday night with great news !