Saving Little Hearts

Grant's Story
Grant was born 5 weeks early on March 14, 2007, weighing 4 pounds, 12 ounces. His birth was induced because I had high blood pressure. Prior to his birth, we had no idea that he had a heart defect. He was diagnosed as having Intra Uterine Growth Restriction (IUGR), but the doctor found no other issues with him. He was born via emergency c-section, and like many c-section babies, he had to be on oxygen for a bit after birth. He seemed to be doing fine, and was even allowed to come to my hospital room the day after he was born.

The next day, the neonatologist came to my room to tell me that they heard a murmur when listening to Grant’s heart. He said that many babies have a murmur, and that is would most likely close on it’s own. That same day, we learned that Grant wasn’t eating like he should. They decided to put a feeding tube through his nose to help him get the nutrition he needed. He was placed in the special care nursery at our hospital, and from that point on, he was not allowed to come to my hospital room.

We spent 3 weeks in Special Care, working on eating, and growing. After those three weeks, he had started finishing bottles (45 ml’s each) and was gaining weight. We thought we were on our way home with him. However, we were told that his murmurs were not getting smaller, in fact, they believed that it was much bigger than they originally thought after looking at his echocardiograms. We were informed that he had a large Ventricular Septal Defect (VSD), and a moderate Atrial Septal Defect (ASD). The neonatologist wanted to move us to the Neonatal Intensive Care Unit and start Grant on Lasix and Digoxin to help his heart function better.

We were in NICU for 5 weeks. When we were first sent there, it was just to start his medication, and get us used to giving it to him before we were sent home. However, Grant stopped eating on his own(it was just too much work for him), had an Necrotizing Enterocolitis (NEC) scare, and only gained 1 pound. We were told by the consulting cardiologist that he would most likely need open heart surgery to repair his VSD and ASD, but that nothing could be done until he reached 20 lbs and was at least 6 months old. We were concerned by this news because he was being force-fed through a tube…and had only gained one pound in 2 months. How was he going to gain enough in 6 months to have his surgery?

We contacted another cardiologist, in another city, for a second opinion. After looking at Grant’s chart, he told us that they would do surgery now. My 2 month old son left the hospital for the first time in a helicopter. He weighed 5 pounds, 14 ounces when he had his open heart surgery. His VSD was patched and his ASD was sutured. We stayed in the hospital for 10 days after surgery, waiting on Grant to eat on his own. He finished his first bottle (60 whole ml’s!) on May 25, and was released from the hospital for the first time on May 26, 2007.