Calista Eden was born weighing 7lbs. in the early morning of Thursday, January 22nd, but even the fact that she was born with a bluish hue to her skin and not breathing when she made her appearance couldn’t really give us a glimpse of what we would face with her in the weeks to come. Upon stabilizing her respiration, her nurses discovered that she was having trouble maintaining proper body temperature.
It wasn’t until much later in the day, after the initial problems had been resolved, that the house pediatrician detected a murmur in her heart. He ordered an echocardiogram for the next day to make sure that we could go home and that the problem was nothing that needed immediate care. The echo finally took place in the afternoon and an unofficial diagnosis proclaimed a slight and fairly common connection between her pulmonary artery and aorta— known by professionals as a PDA—which was nothing to be worried about. By this time Calista was about 40 hours old and clinically stable (boy would be hear those two words a lot), so we were sent home and advised to follow up with our pediatrician and a pediatric cardiologist. It was about 8 p.m. Friday night when we finally made it home.
On Monday morning Marcella took Cali to see her pediatrician. Under the fluorescent lights of the exam room, the yellow tone of her skin was very apparent, so we were sent to Valley Hospital for blood work to make sure the jaundice level was not too high and would require treatment. While at Valley we received the news that a second echo would have to be done since the first one was not available for review. The results of this second echo were inconclusive to the cardiologist who read them, but of great enough concern to warrant a personal call from him to us that evening. This was the first time that we spoke with Dr. Marans, who directed us to come to his office early the next morning. We did.
After filling out the obligatory paperwork and an introductory EKG, Calista sleepily endured her third echo – a 50 minute endeavor during which Dr. Marans discovered the source of her trouble was not a PDA but the far more rare and problematic CAF. A coronary arterial fistula— conceptually similar to a PDA—is a connection of the coronary artery to a location other than the heart tissue. In Calista’s case, the left coronary artery was connected to the right atrium which is normally where oxygen-depleted blood is first deposited in the heart. Oxygen rich blood was leaving her heart normally, and feeding into the coronary arteries normally; rather than supplying the heart tissue as it should, however, 90% (their best guess) of that blood was flowing right back to her heart, starting the cycle over again. All of that oxygen was being moved around, but it was never used to feed her body. In order to manage this diversion and receive enough nutrition, her heart had to work more than twice as hard as it should. Dr. Marans told us this condition can only worsen with time, and so, one way or another, the fistula had to be eliminated. We were then sent to The Morgan Stanley Children’s Hospital at Columbia Presbyterian for yet another echo using a more advanced machine. At this time Dr. Marans did not know how the fistula was affecting little Cali so he warned us that surgery would probably take place in the next 24 – 48 hours. With this in mind, we headed home for a quick pit stop, gathered a few things, dropped of Cassie & Ben’s car seats, and made our way across the George Washington Bridge.
Nothing prepared us for the sheer size of the MSCHONY (Morgan Stanley Children’s Hospital of New York) multiple buildings, many many stories and lots and lots of people. We sat next to Cali and held her hand for a fourth echocardiogram that was conducted by Margaret (the head of the lab), Dr. Marans, and two other cardiologists who were helping to discover more about the CAF. This echo took much longer; if we remember correctly, we were in that room about an hour and a half. It was decided Cali needed a catheterization of the heart in order to be sure of the location and size of the fistula, and to learn more about the anatomy of her heart. It was scheduled for 7 a.m. the next day, so we needed to get all the pre-procedure stuff done right away. We went for blood work and x-rays, and at the end of a very long day headed home at 6:30 p.m. There was snow in the forecast for the next morning so we left our house around 5:30 in order to make it on time. Cali did great with the catheterization. It took some time for her to come out of the anesthesia and, as a precaution, she was admitted for the night. Her cath was very helpful, as it showed them everything they needed to know. It was also determined that her surgery did not need to be performed as quickly as was first determined. She was clinically stable and in no immediate danger; her case was urgent but the doctors felt that they had time to really discuss their options and make sure they were doing the right thing for our daughter. After a night at MSCHONY we went home in the late afternoon. The next day we would visit both the cardiologist and the pediatrician so that both her heart and general health could be monitored. Calista was now a week old.
We were told surgery would come in the next 7 – 10 days, as soon as there was an opening. This would also allow Cali the opportunity to gain some weight. The first week of February was filled with two visits to Dr. Marans and three visits to Maple Ave Pediatrics to be weighed. It was rough, as Cali was not gaining the weight they had hoped she would during the course of the week. She needed more calories, so her milk was fortified with formula. In addition, she had to eat every 2 hours round-the-clock, which was no easy task because she was so sleepy and had no energy. Her heart was working so hard to keep her body going. We waited for an opening for the OR while also hoping it might happen in the Catheterization Lab instead of with surgery. We spent a lot of time praying and talking with friends. We cried.
On Monday February 9 we went back to the cardiologist and the pediatrician. She was still not gaining weight, even with the extra calories. Her heart was just using so much energy. Dr. Marans decided that surgery would have to be soon and would contact the surgery department at MSCHONY again. Later that afternoon the phone rang and it was the hospital. We have a cancelation for Wednesday morning, can you come? WOW! You are waiting for that call to come so that your daughter can get healthy but the actual call makes you feel like you have had the wind knocked out of you. Of course we can come, what do we do? At this point Marcella was feeling a bit better because she has always been an action person—instead of sitting at home waiting feeling helpless because there is nothing she could do to help Cali get better, she could plan care for Cassie & Ben and design a plan of action. She could pack for the hospital. Timmy, however, was not. The fact that surgery was now a cold hard reality instead of an eventual event took everything out of him. We would have to spend most of the day at the hospital on Tuesday going through all the pre-op stuff. Cali needed another EKG, ECHO, X-Rays, Blood Work, and a complete physical by the surgery staff.
Wednesday February 11th was surgery day. We left home very early in the morning with bags packed and not really feeling ready to face what would come ahead. We carried our girl to the door of the operating room and handed her to a nurse who would be by her side during the entire procedure. All that remained for us to do was pray and cry. And that is what we did. We went to the waiting area of the cardiac pediatric intensive care unit (PICU). We took a walk outside, had something to eat, and went back to wait. We felt a sense of peace that can only come from God. After what seemed like a very short amount of time the surgeon, Dr. Jan Quagebore, came to talk with us. All had gone well, Cali was still in the OR and we would see her in an hour or two. The first 6 hours in the PICU were crazy. There were lots of tests and monitoring of everything.
We would spend the next 5 days and nights in the hospital, taking turns going home at night to see Cassie and Ben. We would talk on the phone to friends and family. We received so many encouraging phone calls and e-mails. People reached out from all across the globe. Cali was covered in prayer by so many people, many of whom had never met her, or even us. Every day Cali would make progress recovering from her surgery. She was cared-for by some amazing doctors in the PICU, but the nurses were unbelievably wonderful to her. They treated her with such loving care, and we were so impressed with them. Slowly Cali was taken off all medication, oxygen, and fluids. By the time we went home she was taking Lasiks for her heart function and getting Tylenol as needed.
What a crazy but amazing journey we went on. We learned more about the heart than we’d ever wanted. We felt the power of prayer. We are very happy to be on the other side of the surgery. We are so blessed to have our baby girl home with us and healthy. We continue to be so appreciative of everyone’s prayers and support. We could never have come through this without our Faith, family, friends, church family, and even people we do not know. We are glad to report that the cardiologist thinks she won’t have to have any further procedures. If anything needs to be done in the future it can be done in the catheterization lab. She is no longer taking Lasiks or aspirin. She goes for check-ups at the cardiologist and now is treated like an asymptomatic baby.
She has a joyful personality and loves to smile at everyone. Her baptism was so special for us. God has taken such good care of her and we were thrilled to present her back to Him. We just want to say thank you again for everything. It is an experience, even though it was the hardest thing we have ever had to face, that left us with happy hearts (no pun intended) because of the love we felt and the care we received.
