Heart Surgery May 15, 2002 A.I. Dupont Hospital, DE
Alex and Aunt Sue...2 days after surgery
Alex did not have a lot of energy her first six weeks of life prior to heart surgery. She had an Atrioventricular Canal defect. Because of abnormalities and a hole in her heart, she would tire quickly. When her heart defect was diagnosed the day after her birth, she began taking medication to strengthen her heart and enable it to work more efficiently. She took a diuretic to help her kidneys remove excess fluid from the body. It still took her about 45 minutes to drink a 2 ounce bottle. The energy she spent eating probably equaled the calories she was consuming, so we added a "breast milk fortifier" to her bottle to give her extra calories. At only 8 pounds, it was extremely important for her to gain weight before her surgery, so we spent a lot of time feeding her. It was also very important that she not get sick...or surgery would have to be postponed. Besides doctor visits, Alex did not leave the house that first month and a half. We were very anxious for Alex to have the heart surgery, because we knew that she would start thriving once her heart was repaired.
Dr. Pizarro from A.I. Dupont Hospital in DE performed the surgery. Dr. Norwood assisted.
Dr. Gibbin was her cardiologist as well as an amazing support for us throughout
The staff at Dupont Hospital was incredible and the facility is amazing. Children are wheeled around in red wagons. Bright colors, pictures, toys and balloons decorate the building. This child friendly atmosphere alleviated some of our stress and anxiety. We had a room for the week right down the hall from where Alex would have her surgery. The nurses prepared us by explaining the process step by step. We also met with the surgeon who explained the surgery and recovery and helped put our minds at ease. I don't think it really hit us until we stood at the door of that cold operating room and handed our little 8 pound angel over to the anesthesiologist.
The nurse came in our room several times during that first hour of surgery to update us on the progress. About an hour later, Alex was in the recovery room...the surgery appeared to be a success! The most difficult part for us was seeing this tiny little girl in the recovery room hooked up to so many IV's, monitors, oxygen, ventilator, etc. Alex became very distressed when Chris and I came in to visit. Even if we whispered, she knew we were there. At only 6 weeks old, the connection between us and Alex was enormous.
We saw many children with serious illnesses during our stay in the hospital. Our hearts went out to the parents and children dealing with chronic illnesses such as cancer or conditions such as Cerebral Palsy. After seeing so many sick or disabled children, life came into focus and was put into perspective for us. Down syndrome became less and less important. We just wanted Alex to be healthy. We could deal with the rest! People with Down syndrome are more prone to other health problems. If Alex remained healthy, the better she would develop physically and cognitively. Now that her heart was repaired, a great weight was lifted off our shoulders and we could focus on her health and development and getting back to normal family life!
4/06 Update: Alex still has a minor leak in her heart. This leak does not impact her energy level or growth. Her heart is growing normally and is not enlarged. It will be monitored yearly and there is a chance of another surgery somewhere down the road.
The following day, Alex looked so alert. She drank a 4 ounce bottle in about 20 minutes, and was able to nurse the following day. She went from the intensive care room to the nurses station and finally to our room for a total of 6 days in the hospital. I remembered my mom holding the surgeons hands before the surgery and saying to him, "May God be with you." Alex had a lot of people praying for her and for the surgery to go well. Her surgery and quick recovery does seem like a miracle.