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Ethan
On November 28, 2011 we found out that my youngest son had a congenital heart defect. For the first 3 months of my sweet Ethan's life he was very fussy (you could hardly put him down). He had projectile vomiting and had trouble eating. I took him to the doctor and told them that I thought he had acid reflux because my older son (who was heart healthy) had acid reflux and had many of the same symptoms. They put him on Zantac and sent us on our way. About a month later, his symptoms were even worse and I noticed that when he got upset he got blue around his lips. I got him an appointment to see his doctor on Monday after a really hard weekend crying and being extremely fussy. I thought that maybe they just needed to change his meds. My sister came with me and, after a long wait to see the doctor, he came in. I noticed that he was taking extra time listening to his heart. He said he heard a heart murmur but that it could be nothing. He wrote him a new script and said that he wanted me to schedule him for an upper GI xray and an echo. Then he said, Let's just have the nurse check his blood oxygen level before you leave. We got down to peds and they did the test for 45 min trying to make him warm and trying not the let him move so they could get a good reading. They said a good reading was at least 94, but his never got above 82. They asked if the doctor told us we might be staying and I said no. They called up to talk to him and he told the nurse to admit us. They immediately put Ethan on oxygen The doctor came down and said it could be one of two things; his heart or pneumonia. He had someone come and do an echo right away. They didn't have a pediatric cardiologist so they would just have the adult cardiologist look at it and if it looked abnormal they would send it out to be read. Well it came back very abnormal and before I knew it Ethan's doctor said that he needed to be life flighted to either Geisinger, Hershey or CHOP. He said that he did his residence at Hershey and that if it were his child he would want him to go there. My son's doctor's appt was at 1:45 that day and by 7 at night we were waiting for the Life Lion to get our son. It all happened so fast and I had never been more scared. We made the 2 hour drive to Hershey ( It felt like 10 hours) and got to Hershey Medical Center around 10pm. We waited in the family room to get some kind of information about my baby. At that point, I didn't know if he was going to live or not. They came in to get me and my family and took us to a seperate room. There they told us that he had a congential heart defect called Total Anamolous Pulminary Venous Return. He was going to need open heart surgery within the next day or two. Well two days later he had open-heart surgery on 11/30. He did very well but within the next 24 hours after they took him off the breathing machine his left lung collapsed. They didnt have to intibate him again, thank God, but they did have to put him on vapo thurm and do chest pt every half hour. Finally his lung got better and he started to make great improvments. He was released from the hospital on 12/9. We were there for 12 days and I was scared to leave all the doctors and nurses. They took such great care of him that I was afraid I wouldnt be able to give him the care he needed. Of course all the doctors and nurses reassured me that I would do fine. The first few weeks home were very nerve wracking. Did he look blue? Was he eating enough? Was he in pain? Does his incision look ok? I was very anxious. I am happy to say that now he is doing very well and I am less anxious. He had his check up with Dr. Monaco on January 17 and he couldn't be more happy with how Ethan's doing. He is gaining weight and has great color. His echo also showed that his pulminary veins were good and open with no obtruction. There is still a possibility that this could happen, but for now all is well. Some days I still have anxiety but then I try to remember how blessed I am to still have him and his older brother. Ethan just turned 5 months yesterday and he is the sweetest, happiest baby in the world now!
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Caroline Lee
Caroline Lee McKaskle was born on November 11, 2004 (also her Mommy's birthday) via c-section following an uncomplicated pregnancy. Within hours of her birth, she was life-flighted to Hershey in a snow storm. She was diagnosed with Pulmonary Atresia w/ Intact Ventricular Septum (PA/IVS), Tricuspid Atresia (TA) and Hypoplastic Right Ventricle (HRV). On November 12, 2004, Caroline had her B-T shunt surgery. She was in the hospital until December 7, 2004. On August 5, 2005, Caroline had her Hemi-Fontan surgery and was out in five days. On August 1, 2007, she had her Fontan and was out in 4 days. Today, Caroline enjoys dancing, using the computer, riding her bike, swinging, singing, playing with her big brother Noah, swimming and drawing/painting. Due to a non-cardiac related issue, she struggles with school, but is very bright when it comes to anything electronic. Caroline is doing very well heart-wise, but occasionally will get blue fingers when she gets cold. She sees the cardiologist every 6 months.
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Lucas
"Our son Lucas was born in 2005 with a congenital heart defect called tetralogy of Fallot. As most hearts babies are, he was a tiny little thing, barely able to stay awake during a feeding, scaring us all the time, up until 3 weeks after his birth when the inevitable came and he finally turned "blue" signaling that it was time for his first surgery. It was, until that point, the most difficult day of our lives. After being rushed to Hershey Med, he was sent into surgery; the worst part of the day was when they took him out of my arms to go into the OR. We waited for news. Seven hours later it came...Lucas did well for a 5 pound little guy...he was a trooper. He continued to scare us for the next two years, as he developed lung problems and some other issues. But each time we travelled to the Children's Heart group, our hearts were in our throats. We never knew what we would hear. Even after his correction, he always seemed tired, out of breath often and was just so small. Finally at two, an echo and cath showed severe pulmonary stenosis and an ASD that needed corrected. At that point, we reached the next most difficult day of our lives, another open heart surgery. This time we went in knowing that by doing the valve replacement, we were committing him to more surgeries, but he had to have it done. Again, he did wonderfully. Three years passed as he grew in age, grace and wisdom (well, as much as a five year old can), until we saw the signs again. For awhile, we had had a close to normal little guy. Still less stamina than the other kids, still smaller, but much better than before. When we went to that appointment on Nyes Rd, we knew what to expect, we had seen the signs and knew the symptoms, in fact, we knew his heart better than ours. It was time, time for that next valve replacement, it hadn't last nearly as long as we hoped, but it was calcified and needed to be replaced. At that point, we reached the third most difficult day of our lives. He was getting ready for the third open heart surgery when they did the cath that found the defect that they missed, PAPVR (partial anomalous venous return). I learned it could have been worse, because it could have been a total defect, his was partial, but it still needed corrected complicating the valve replacement. That day was the most difficult, he was 5, so he understood the weeks leading up to the surgery, he was terrified, tried to be strong, but the tears were there and didn't want to go away. His physical recovery was amazing, we were home after another open heart in 4 days. Emotionally, he is still dealing with that part of recovery, still at 6 he remembers. Looking back, it was almost easier when he was 3 weeks, he didn't get it and didn't remember it. But he continues to move forward. He started kindergarden this year and loves it! He played t-ball in the spring. And right now? Right now, he is on a soccer team!! AND, he is as big as all the other kids!! We are amazed at his resilience and strength. We don't say it enough, but he is our inspiration...he always will be, from that day 6 years ago and through his next surgery, and more and beyond. He's our miracle. Here's to our miracle heart kids, they are God's gift to us all."
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Elizabeth Marie
"Elizabeth Marie was diagnosed prenatally with Hypoplastic Left Heart Syndrome (HLHS) the day before Thanksgiving in 2006. She was born April 2, 2007 and had her 1st stage of heart surgery on April 4, 2007. She had her 2nd stage of heart surgery on October 3, 2007. After spending eight and half long months in the hospital, Elizabeth came home for the first time on December 21, 2007. Elizabeth was the most pleasant, loving, and beautiful little girl. She had a valiant fight with a heart condition and she rarely cried and always had a smile for everyone she saw. Unfortunately, Elizabeth's hemi-fontan failed and she passed on March 20, 2009, a few weeks before her second birthday. She was and will always be deeply loved by her friends and family, and her memory will be cherished forever."