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.