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Lambert Levi Lyon
10/17/2016 Latest post:
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Lambert's story began at my 20 week ultrasound, where our doctor told us that his "long bones" (arm and leg bones) were measuring short. He referred us to the University of Iowa where we were told our baby had a condition called Skeletal Dysplasia (Dwarfism). The doctors did an amniocentesis and genetic testing to get a better understanding of the type of skeletal dysplasia he had. They told us that they could not confirm his diagnosis until birth, but that he had one of two conditions. The first was Achondrogenesis- a lethal form of skeletal dysplasia that limits chest cavity and lung development so severely that they cannot support life. The second, Spondyloepiphyseal Dysplasia Congenita- a less severe form that also limits chest cavity and lung development but the child can sustain life with support of oxygen. We were very disheartened by this news but remained positive and prayed that we would have a baby that would survive birth and the days shortly after.
On August 4, 2016, I had my final OB appointment before my scheduled induction, during which my ultrasound showed that my fluid was low and I needed to be induced immediately to reduce stress on the baby. At 11:11 PM, Lambert Levi Lyon was born, weighing 5lbs 3oz and measuring 15 inches long. He was transferred to the NICU where he was put on positive pressure to help keep his lungs inflated. He underwent a tracheostomy (incision in windpipe) surgery to help with breathing and continue to get positive pressure when he goes home. He also received a G-tube that will help supplement his feedings when he goes home. His long bones are short and he has a small chest cavity as well confirming the dwarfism diagnosis.