by Ann Marie Muscatello

Sam's journey at Abington Memorial Hospital started when I had gone in for my 20 week ultrasound. I had thankfully gone in during my 19th week of pregnancy and discovered I was dealing with cervical incompetence. Despite an operation, strict bed rest and hospital stays, Sam was born October 5, 2006 at 23 weeks and 5 days. The nursing care while I was in the hospital was remarkably supportive. I had a very special nurse stay with me during labor and I remember her quieting me down through my tears so I could hear Sam crying. A team from the Special Care Nursery was waiting to examine him and take him to the NICU. I was only able to briefly see Sam as they wheeled him away in an incubator never able to touch or hold him.

I remember being wheeled to the NICU a short time later. It was night and I felt like I entered into a science experiment with the dim lights, bells, beeps, and machines everywhere. As all possibly long term NICU parents are told, it was explained to me that Sam's journey would be a roller coaster ride. They delivered on their promise. Sam's 1 lb 8 oz, 11" body did not initially look so bad to me. He was just a super tiny baby. His "honeymoon" period lasted for less than 1 week. The next several weeks proved to be challenging for Sam and excruciating for me. He had lost weight, was on and off oscillators and ventilators, had many blood transfusions, dealt with serious infections, had laser eye surgery for ROP, and dealt with serious reflux.

The worst of Sam's experiences in the NICU came when I had to sit back and watch as doctors and nurses had to bag him for several minutes when he would stop breathing. He was already breathing with the help of machines. I sat numb waiting for someone to turn around and tell me the worst has happened. I thank God that never happened. I also stayed with Sam all night by his bedside as he sat at 100% oxygen on a ventilator and was still not doing well. All I could do is pray. I felt helpless.

Despite the extremely difficult times, I remember the absolute joy I felt holding Sam's little fingers for the first time. Sam was so fragile that I could not hold him for several weeks. I cherish the first time I was able to hold him in my arms. The firsts with a preemie are extra special because they don't come easily. His first cry, the first time I could touch him, and the first time I could hold him are etched in my memory. After awhile you don't even see the wires, tubes, tape on your baby. You only see your child. In a strange way this abnormal world becomes your new normal.

I would read to Sam and his pod mate Makai, played music, sang to him (not very well!), and decorated his "home" with cards, toys and photos. Slowly Sam began to gain weight and respond to medication to help his fragile lungs. After 99 days Sam was released to come home. It was the best day and the scariest day of my life. I learned to depend on those beeps, bells and monitors to tell me Sam was ok.

Sam's progress at home was slow and stressful. I had a 4 in 13 oz baby with colic, an apnea monitor and terrible reflux. But my baby was home. With the help of excellent pediatric care, love and support from family and friends, and prayers, Sam continued to grow and thrive. He has had OT, PT, and speech services through early intervention. He continued with OT and PT on and off during his 8-1/2 years.

Sam has a vibrant spirit and truly loves people and life. He is funny, clever, curious, passionate and a happy kid. He is frequently called "the mayor" by those who know him and he does not know a stranger. Most of his life I have had to explain early on to people we meet that "Sam's a hugger". Sam is finishing up his 2nd grade school year, tries his hand at many sports, loves video games, reading and his friends and family. He doesn't quite understand how blessed and special he is yet because he lived his story the only way he knew how. He is a fighter like many of these little boys and girls who are over anxious to enter the world way too early.

The silver lining in this cloud is that Sam and I were supported and loved by so many along the way. I think being a preemie parent is like belonging to a club you never really wanted to join. However, once you are part of this club it is amazing the connections and bonds that grow. These little babies are uniquely special and their spirits shine.

I had the opportunity to get to know countless doctors, nurses, moms, dads and babies that I would never had known without this experience. They were mostly strangers at the time offering a prayer, a hug, or a story about another preemie they knew. Some of these strangers became friends sharing this unique experience. I sat for 99 days and watched families come and go and no matter how quickly their child progressed each one shared in the same experience of having to leave their precious child in a hospital. It is like taking out your heart and asking someone to make sure they take care of it as they would their own. I have always felt so fortunate that Sam was loved by those who cared for him.

Sam has asked me if it is hard to take care of a kid and I tell him even the hardest days are the best days. I think that kind of sums up the NICU experience as well. My proudest title started when Sam was in Abington's NICU. I was always referred to as "Sam's mom". I could not be more proud of this title and proud of Sam's unique will to live and love. We have been so blessed.

Family, friends, nurses, and doctors reminded us to take the NICU journey "one day at a time". We rejoiced in the "good" days.

Martha & Paul / Wyndmoor, PA

Martha & Paul