My son, Xavier (now 5), was born 4 weeks early due to low amniotic fluid. I had a normal pregnancy and didn't expect anything different despite his late prematurity. Little did my husband and I know that on Friday March 13, 2009 things were about to change dramatically. When Xavier was born (at 4lbs) there were immediate signs of distress...he had difficulty breathing as well showing signs of seizures. He also looked different than typical children. He was born at a hospital close to our home that had wonderful OB/GYN and infant care. But despite their best care we were told they were unable to provide enough support for Xavier in their NICU. We were told on his fourth day of life that he had to be transferred to Johns Hopkins in order to undergo further testing and access to doctors skilled in more complex cases. We were in shock to say the least. We were not expecting any of this and suddenly our lives were turned upside down. Getting to the NICU at Hopkins was a whirlwind of nurses, doctors, and tests. I have to admit I was bitter and just wanted to bring my son home and not have him poked and prodded. We were told that Xavier likely had a genetic syndrome and he was, in fact, experiencing seizures. He also had to learn to breathe and eat on his own. It was noted that he also had a number of congenital anomalies. Xavier spent a total of 32 days in the NICU and in that time my husband and I created relationships with doctors, nurses, and even other families that last until this day. They rallied in our highs and supported us in our lows. Xavier's nurses gloated at the fact that I was able to provide him solely with enough fresh breast milk and at the skill of his dad as he was the only one Xavier would drink from a bottle for. They called us immediately with good test results and sat with us to understand more difficult ones. In that time out dread and fear were able to be calmed by simply talking with the nurses about "normal" things. We joked, talked about the weather, and we brought them food (a fed nurse is a happy nurse lol). When the day came for X to come home our doctor met us in the hallway singing the Rocky anthem as we strolled X's stroller into the NICU. You never want to see your child go through such difficult things but I know our son was in the best hands. 2 years after his birth Xavier was finally diagnosed with a rare genetic syndrome called Schinzel-Giedion syndrome. He's one of approximately 12 kids worldwide. We would have never gotten this diagnosis had it not been for our geneticist and genetic counselor...providers who have been with us since the NICU. We have been with our different specialists through surgeries and hospitalizations. Each year we attend the NICU reunion to see the nurses and other babies who were with us from the beginning. Xavier has even attended daycare and now school with the little girl who was next to him in the NICU. We never expected to have a child with special needs but we are fortunate and forever thankful to the staff at the Johns Hopkins Children's Center NICU.
Have a beautiful weekend!