February 7th to the 14th is Congenital Heart Defect Awareness Week. Sometimes babies die because they are sent home with a heart defect no one knows about. My baby was sent home with a heart defect. For nearly two months we did not know. Our ultrasounds said, "possible hole in the heart" and my obstetrician said, "They will look at his heart before you take him home." LOOK at it... Two pediatricians saw Adam before we left the hospital. They listened to his heart but they did not look at it. We stayed one night and went home. Adam was a sleepy baby, I knew some babies were hard to wake, so I did not think it was abnormal. Adam took longer than usual to pass his meconium, and to get back to his birth weight. I went to a Lactation Consultant to see if I needed to hold him differently. When Adam was one month old we saw our permanent pediatrician, on base, for the first time. I told him about my pregnancy, I told him about the ultrasounds, he listened to Adam's heart. He said his heart sounded fine, but he was breathing a little fast. Had I noticed he was breathing a little too fast? Newborns are weird breathers. Sometimes they breath a little fast, a little slow, a little shallow, with a little sigh. I started to feel nervous. I had thought we were in the clear. Those two doctors at the hospital sent us home (why hadn't I insisted they LOOK at his heart!) We had seen two civilian pediatricians before we got into DEERS and could be seen on base. Why hadn't they noticed my precious baby was breathing too fast? We were moving from Kansas to Virginia in two weeks, our base pediatrician wanted me (David was already moved) to a pediatric cardiologist before we moved. The cardiologist said Adam had two holes, one moderate and one severe. He gave me a handout with an illustration. He gave me a hand out with warning signs to watch for. I did not understand what those signs warned of. He said to follow up with a cardiologist after our move. November 12, 2011 I got on an airplane with my four kids and our cat and flew from Kansas to Virginia. We found a cardiologist. She sat on the table next to Adam and ran the ultrasound wand over him herself, and she said, "That's a big hole." The reason no one could hear the hole, there was no blood wooshing through a hole, it was that big. That's a big hole. I have to stop for a minute and say, mothers have taken their babies home from being born not knowing they had a heart defect and those babies have died in their arms, at home, in the hospital. This is why we have congenital heart defect awareness week, so people can learn about heart defects, learn to watch for those warning signs I got a hand out about. They are the warning signs of congestive heart failure. Breathing that causes the ribs to stick out, blue lips or finger or toe nails, sweating while eating, rapid breathing, tired, hard to wake up. The signs I was watching for... Our cardiologist in Roanoke is amazing, she is one of my three favorite doctors in the entire world. She sent Adam home that day in November 2011 with diuretics. A few weeks later she gave him potassium. I had to give him those medicines with a tiny tiny syringe every day. He fought. Good boy, fighting and stubbornness is good. He wasn't too tired to fight most of the time. I asked if I should give him formula, I, a staunch supporter of breastfeeding, his cardiologist said no, he was doing fine with the nursing. On December 23rd, 2011, Adam had an appointment, he was seeing his cardiologist every three weeks. That day, Adam had lost one ounce. Until that day my mind was saying two sentences over and over, "Please let me keep him." and "Please, no heart surgery." On December 23, 2011 she said, that's it, he's lost one ounce, he needs surgery. I thought, okay, in six months, in a year... She asked if we wanted Duke or UVA, I'd lived in North Carolina for three years so I said, Duke. She said okay, we'd set it up, two weeks. Two weeks. Two weeks. Two weeks... I'm afraid for a time I was not a very good mother to my other kids. I think I was a shell. Two weeks. Merry Christmas, your son is so not well that in two weeks we will cut his chest open. We will make him very very cold, we still stop his lungs, we will stop his heart, we will cut him open... Two weeks. Two weeks. Two weeks. So, I said to myself, lets go outside. I took him outside all the time, walking and walking and walking and walking. If there was a chance I was going to lose this boy he was not going out of this world without having been outside as much as possible. What's scarier than open-heart surgery? Spinal surgery? Lung? Brain? Once I knew he had to have surgery to live I knew that was it. All my other hopes were gone, hope for no hole-gone, hope for the hole to close-gone, hope he wouldn't need surgery-gone gone gone gone so very totally gone. Okay, well, if he needs surgery he needs surgery and there is nothing I can do about it. I did not read a single word about it. I looked at pictures of babies who had open-heart surgery so I would not get scared when I saw him. Then on December 28th I was at the store looking for a light bulb for a crayon-melting kit one of the kids got for Christmas and my phone rang, and it was Duke. Come down January 10th they said, pre-op January 11th they said, surgery January 12th they said... The hard part right before I handed him over was I could not nurse him past midnight. And of course next morning he didn't go back as soon as they said. But once he went back all I could do was wait. I had met Dr. Jaquiss and I liked him, I knew Duke was a good hospital. Josephine came with David and me to wait. Just like when Adam was born, she came with us to the hospital that day too. Antonia took care of Caroline for us. The best three girls in the whole world. Adam had an allergic reaction to one of the medicines and stopped breathing, but other than that it was successful. He had three holes, one they sewed shut, one they patched with a bovine patch (moo) one they left alone. That's Adam's story. He is cool. We are damn lucky. So lucky. I do not know a stronger word for how lucky we are. So, share this story, it has a happy ending. Oh, and I think there were signs of CHD Adam exhibited that I did not recognize before I knew. He had puffy eyes, he never woke up to eat, his fists were always closed.