We are the Stacy family, Rich, Chelsea, and Teresa. We live in the Pittsburgh area and are excited to share our story. The mission of Teresa’s Hope 4 Hearts is to help and give “hope” to other families affected by Congenital Heart Disease (CHD). Please read on to learn about our journey and how you can help raise CHD awareness.
We learned of our daughter’s heart condition on July 2, 2012, when we were four months pregnant. Ironically, we became “heart parents” on our 1st wedding anniversary. Although we didn’t know the severity of our daughter’s defect, we were still devastated and shocked. All the stress and anxiety of the unknown continued to build up over the next four months until Teresa arrived on November 19, 2012.
To treat stress and anxiety, we resorted to the drug Zoloft. As explained to us, this is a type of selective serotonin reuptake inhibitor (SAY), which is usually prescribed for the treatment of stress and anxiety disorders. It helps to increase levels of the neurotransmitter serotonin in the brain, which can help improve mood and reduce feelings of anxiety and stress. He made us feel better.
While still in the hospital, we learned after multiple Echocardiograms that her condition was worse than we had expected. She was diagnosed with Epstein’s Anomaly (EA) and multiple Ventral Septal Defects (VSD).
We went home from the hospital with no definite plan for Teresa besides a follow-up visit to our cardiologist. We began adjusting to life with a newborn and were filled with excitement but also felt the anxiety of the unknown future for our daughter. On December 7, 2012, we went to our two-week routine visit to the pediatrician that sent us to our first ER visit. The pediatrician was concerned about Teresa’s weight and her refracting, rapid breathing, and after a conversation with our cardiologist, we were told to head to the hospital.
Due to Teresa’s lack of weight gain, we spent the next 11 days at Children’s Hospital of Pittsburgh. She had multiple tests, and they explored different feeding methods, from breast to bottle to feeding tube, in an attempt to help her gain weight. Eventually, the doctors decided that some intervention was needed to lessen the stress on her heart. We were told Teresa would have open chest surgery to place a band on her pulmonary artery in an effort to decrease the pressure on her heart making eating easier and ultimately increasing weight gain to buy time before another intervention. This was without a doubt the scariest thing we as parents had to go through. She had her surgery on December 13, 2012, not even a month old and she endured a major operation and did so well! We were home just in time for Christmas and began to re-adjust to life outside the hospital, as “heart parents”.
Although, it didn’t come without struggles, Teresa gradually gained weight! Through frustrations, tears, and the unconditional love and support of our family, we got every last milliliter of milk we could into her! We could write a book on all of Teresa’s different feeding methods : ). The next few months were the hardest, playing the waiting game. We knew another surgery was imminent, but we had no idea when. We tried to live our lives like any other normal parents, but her condition seemed to haunt me, as her mom, no matter how well the doctors said she was doing. I could never let go of the worry that she wasn’t going to gain weight, that she wasn’t developing correctly, or, simply, if her heart could handle anymore. Over the next months, we visited the cardiologist and had weekly check-ups to monitor weight, blood pressure, and oxygen levels.
On July 2, 2013, Teresa had a heart catheterization to determine what surgery(s) would be in our future. As our journey as heart parents continued, we spent our second anniversary in the hospital. After learning more about her specific defects with the heart cath, our doctors agreed, Teresa would need two more surgeries. The first open heart surgery being a Bi-Directional Glenn procedure, typically performed prior to 1 year of age, and the second, the Fontan, performed between 2-3 years old. You can imagine our surprise when we learned our daughter would need not only one but two more surgeries. At this point, the Glenn was not scheduled, but our cardiologist informed us it would happen soon after her oxygen levels dropped to the upper 70’s.
To keep things interesting, shortly before she was to have her second surgery, Teresa got a skin condition called Petechia, and we were again rushed to the ER not knowing what was wrong with our daughter. After a long night waiting in the ER, a Hematologist discussed the possible prognosis. She made us aware of the worst case scenario, explaining that there was a chance Teresa could have Leukemia. It was again a devastating blow to us as a family and our progress thus far. After many blood transfusions, tests, and nights in the hospital, they came back with the news that it wasn’t Leukemia and just a rare virus. We were overjoyed and considered this a large battle won. Through all of this, we stayed faithful and constantly reminded ourselves of how blessed we are and how amazing and strong our little girl is!
We will never forget the day we scheduled her open heart surgery. I can still remember writing it on our calendar, as if I could possibly forget, August 5, 2013. And so, about a month later, we headed back to the familiar hospital routine that we had grown accustomed to. We fought back tears and squeezed her tight as they took her into the OR. Though, we knew that Teresa was in the best hands and although this was going to be hard, it was for the best, and our little girl was going to come out stronger than ever! This hospital stay was different; we were confident, we were stronger as a family and knew this was one step closer to making her feel better. It was heart-breaking again seeing Teresa with all of the IVs, tubes, oxygen, and, of course, her newly patched chest, and now at nine months, knowing she was in pain and uncomfortable not being able to crawl about. The days were long, but, surprisingly, within a week, we were discharged. We were so relieved to have this surgery completed! The first 8 months of her life, we felt as though we were walking on egg shells; never sure about the future, constantly worrying about her health, weight, and the “big” OH surgery, and now we could finally breathe.
It has been three months since the Glenn, and Teresa is doing very well! Our baby is 1 year old! She will have her third surgery (the Fontan) between 2-3 years of age, but we are busy enjoying every day with our little miracle and not spending too much time worrying about the future. And as I write this, and smile reflecting on the past year, I can confidently say, I wouldn’t change anything; we are truly blessed to have our Teresa, every last piece of her : ).
Lastly, we must mention, that we could not have endured this past year without our FAITH, PARENTS, family and friends. Also, the incredibly talented and caring doctors and nurses at Children’s Hospital of Pittsburgh are an inspiration and blessing.
We appreciate your interest and support in our cause and hope you can continue to follow Teresa’s progress and our charity’s progress through our website and Facebook page.