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My pregnancy with Sam was uneventful. It was the carbon copy of my first pregnancy. We had no indication of what was to come. I had a scheduled c-section, and when Sam was delivered, I heard a weak cry and then silence. I started to hear familiar sounds. (I am a L&D nurse). I knew that they were helping him breathe. The fact that more people came into the room to work on Sam was not a good sign. I got a quick peek at him and he was taken to the NICU. They had to intubate him in the NICU because his respiratory status declined once he got there. There was concern about his low muscle tone and lack of vigor. He was intubated for a total of twenty-four hours.

During his thirty-day NICU stay, Sam had the million dollar work up. They felt like something genetic or neurological was wrong with him. Despite the medical team's best effort, we went home without answers or a diagnosis. Well, we did have one diagnosis: reflux. I had no idea how much our life was about to change.

Sam had a few episodes of vomiting in the NICU, but the fun really started when we got home. Sam did not feed very well. It took a long time to get just a few ounces into him, only to watch most of it come back up. His weight gain was poor and he was said to be failure to thrive. A majority of my day was spent feeding Sam. He did not sleep well and the stress was unbelievable. We tried every medication and every formula with no noticable improvement. He was also behind with his development and his muscle tone remained poor.

I was exhausted. Caring for Sam was so time consuming, and I felt like my older son was being ignored. We spent a lot of time going to doctors appointments, and no one could tell us what was causing all of Sam's issues. He was becoming a medical mystery. It was becoming obvious that something was not right, but we still had no diagnosis.

One day, when Sam was about six months old, he just stopped eating. After about twelve hours of me trying to get him to eat, I took him to the emergency room. He was admitted for hydration, feeding, and testing. An NG tube was placed for feeding. He had many tests during his two week stay. He was scoped and it was discovered that the reflux was damaging his esophagus. He had a swallow study and it was clear that he was aspirating his food into his lungs. Sam was also having apnea episodes related to the reflux. The ph probe was done, and the result was severe reflux. We had a surgery consult and our only option was a nissen fundoplication and a g-tube placement. We took Sam home for a long weekend and were to return the next week for surgery.

I was crushed. I thought that I was going to be the mom of two two happy, healthy, active boys. I was starting a new journey.

Sam had the surgery. His recovery was slow. He spent another two weeks in the hospital trying to get a feeding schedule that he could tolerate. They had to put a central line in for IV nutrition for the first few days. My poor little baby had so many tubes and monitors. It broke my heart.

After we got home, it took a long time to get the right feeding schedule for him. I had to play with different rates and different foods but I finally found what worked for him. Luckily I was comfortable with all of his equipment, being a nurse. Sam's reflux was controled with the fundo. He was no longer vomiting. We had to deal with some retching post-op, but that stopped when we switched to a food that was easier to digest (Peptamen Junior). Overall, the surgery was a success and I have no doubt that Sam's quality of life was greatly improved with the fundo.

There was a part of me that was in denial and thought that Sam would "catch-up" with proper nutrition. I was wrong. Sam is now two years old and functions on a three to four month level. He still has very poor muscle tone. He cannot support his head or sit up. He has a poor swallow and continues to be 100% tube fed. Sam does not communicate with us. He will babble and lights up when his daddy and big brother play the guitar for him. He does not smile much, but when he does, he lights up my day. He likes to bat at toys and seems to enjoy anything that lights up. We have exhausted all neurological and genetic testing. Sam remains a medical mystery.

At this point, I am not sure what the future holds for Sam, but he could not be more loved.

On Tuesday, April 3, 2007, Sam woke with a temperature of 106 degrees Fahrenheit. I could not get it to come down with Tylenol and Motrin, and his breathing was concerning, so I called 911. We went to our local hospital, but I knew we would not be there long; Sam was a bit too much for their facility, and Sam got his first helicopter ride to Johns Hopkins.

He was found to have pneumonia and needed to be put on a ventilator, because he was unable to breathe effectively on his own. I kept thinking that once his lungs cleared, we could get rid of the vent and get him home. That was not the case. It became clear after a week that he was not getting off the ventilator. His lungs were clear and he was not even tolerating small decreases in the vent settings. Whatever was going on with Sam was getting worse, and he could no longer breathe on his own. The thought of him on a ventilator for the rest of his life was devastating.

We were very lucky to have the support of a wonderful doctor who helped us to make some very difficult decisions. He told us that Sam would tell us when he was done, and he did. After having a conversation with the doctor, we returned to Sam's bedside. He had spiked another fever and just looked restless. He did not tolerate any kind of cares and required deep sedation and paralyzing just to do simple cares like changing his diaper. He was not comfortable. I knew it when I looked into his eyes. We asked for the breathing tube to be removed.

Sam stayed with us for a few hours. We held him and talked to him. He was kept very comfortable until he passed away. I do not doubt our decision, but it was the hardest thing I will ever have to do. I take comfort in the fact that Sam is in a better place; he is no longer suffering. My body aches for him every day. I hope that he is in Heaven doing all the things he could never do in his time on earth. Ben, his big brother, thinks he is up in Heaven eating a Happy Meal.

During his short time with us, Sam touched so many lives. He will be missed by many, especially Mom, Dad and Ben. Thank you for all you gave us, little man. We love you and miss you.

Sam got his angel wings on April 12, 2007.

Written by: Amanda, Sam's Mom

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