Andy and I married on a cool autumn day in October 1989 at a little local church. Like all young newlyweds we were filled with hopes and dreams of our future. We decided it best at that time to hold off on starting our family. Twelve years later I felt a strong urge to start our family. We were financially stable, more mature and responsible and it just felt right. I could hardly believe it when we bought a home pregnancy kit and it tested positive. Yeah!!! Our family would be complete.
The pregnancy went smoothly. Miss Hannah decided to make an early appearance though and instead of being born in June she came in May - Property Tax Day to be exact. My water broke just after midnight and we went to the local hospital. I delivered a 5 pound 5 ounce baby girl that was just perfect. I'll never forget those little eyes looking into mine when they laid her on my stomach. She had the face of a little angel (and still does). Our little angel. They put her in an isolette to warm her and give her some oxygen. Things escalated throughout the day and we were transferred to a neonatal intensive care unit at another hospital.
Hannah had to stay in the NICU for 7 days. It was so hard to leave my new baby alone at night there. We weren't told we could stay. So during the daytime we would go spend the day with her (and all the other babies that were there). Andy bought a cassette with lullaby guitar music and we would play it on a little tape player near Hannah's crib. I had wanted to breastfeed so I continually went down to a little room for privacy while I pumped my breast. I remember the day the nurse reached Hannah to me and she breastfed the first time. We both knew instinctively what to do. I don't have to tell other Moms what a magical moment that was.
Passing the car seat stress-test, we were allowed to leave with Hannah. I was frightened because she was so small and she didn't take a bottle very well and, of course, I was a new Mommy. Hannah had a big appetite and soon learned how to nurse and take a bottle. My milk slowly dried up so I could only breastfeed for 3 months. I knew after a few months that something wasn't right. Hannah was still very limp in my arms. I read the baby books and knew what she "should" be doing and wasn't. I mentioned it to the doctor on each of our visits and he reminded me that she was premature and to give her some time. Andy worked during the day and Hannah and I filled our hours with playtime on the floor, going shopping, going for walks in the stroller, and naptime. We loved naptime.
The months passed and I thought it would be a good idea to consult a different doctor regarding Hannah's developmental delays. We found a great pediatrician that we are still with. It was Dr. Wolfe that agreed there seemed to be a problem. She made a referral to our state's Early Intervention Program and we started physical therapy on Hannah.
Meanwhile, we tried to do all the "normal" things other parents do. We started Hannah on solid foods and she loved to eat. Around November 2002 Hannah developed a nasty cough and runny nose. My baby had her first cold. Little did I know that we would end up in the Pediatric Intensive Care Unit because of a common cold. I had planned a big Thanksgiving dinner at our house. I remember that day how fussy and cranky Hannah was. She didn't feel well and Mommy was busy rushing around.
The cold hung on and Christmas came and went and on December 28th while visiting relatives I knew Hannah's color was "off". She was struggling to breathe. We rushed to the closest hospital where they stabilized her and we then drove to our hospital. A chest x-ray was taken and it showed that one of Hannah's lungs had collapsed. She was very unstable and we were moved from the pediatric floor to the PICU where she could be monitored more closely. While there, Hannah was seen by a pulminoligist and a neurologist. After a clinical exam they both agreed Hannah displayed signs of a neuromuscular disease called Spinal Muscular Atrophy. Blood was drawn and sent off for testing and we waited to see if our baby would improve and if they could help us. A grim future was described to us time and time again. This disease was terminal and most children barely made it past the age of 2.
After a whirlwind of events in the hospital, Hannah's lung still partially collapsed, we decided to bring our sweet baby home and love her till the end. We were so scared. It was difficult to deal emotionally or physically with all that was happening. We had stayed in the hospital 10 long, tiring days and slept upright in "lounge" chairs when we could. I knew we shouldn't leave Hannah's side and that still holds true today. We didn't know there was a way to manage this disease. We were set up through a durable medical equipment supplier with some basic equipment Hannah would require at home. An oximeter to measure her O2 and heartrate, a kangaroo feeding pump, 2 suction machines, an oxygen concentrator and tank oxygen. While still in the hospital we were told that Hannah could no longer eat orally and a naso-gastric tube was placed in her little nose.
We came home searched the internet for information and a spark of hope was ignited when we stumbled on a non-invasive management for Hannah's disease. SMASupport.com offered us what we were looking for - a future, however grim, with our precious Hannah. I joined the SMASupport Chat list and soon started learning what we needed to do to improve Hannah's quality of life - to give her a chance. She had proven to us she was a fighter and we were willing to do whatever possible to help her win the fight. (Or at least fight fair :o)
I remember Sallie, a grandmother of an SMA child from the chat, responding to my request for information about the non-invasive management. She mentioned the amino acid diet, the bilevel BiPap, Cough-Assist, the surgery to get the gastrostomy tube placed....... At the time it seemed like so much information and I thought how will I be able to convince doctors, etc. that this is what we need and will they help us get it. As I am a list maker, I made my list of what we needed to get and do. Slowly everything on my list became a reality. Hannah is on bilevel BiPap for ventilatory support, we use an Emerson Cough-Assist machine to keep her lungs clear/expanded, she is on the amino acid diet, we traveled to Newark, NJ for her nissen and g-tube surgery, she has ankle/foot orthosis and knee immobilizers.
With the big things out of the way, these days our focus has been on obtaining a medical stroller, a bathchair, and switches and toys to assist Hannah in play. I'll probably always have a list, this keeps me hopeful and focused. Although our needs and goals for Hannah differ from other parents of kids without SMA, we want to give her the best opportunity at living a joyful life. Through clinical trials and research I'm certain a cure will be found.