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Meet Tiny Light Maximilian. He loves music and books and will happily spend a day being listening to stories and flipping through the pictures. He also enjoys playing with his cats and even shares his food with them!
Maximilian was born prematurely at only 26 weeks gestation. He weighed just 1 lb. 11 oz. and measured 12.5 inches long. He spent a total of 185 days in the NICU facing multiple hurdles characteristic to a baby born prematurely including respiratory issues, blood transfusions, jaundice and infections. Before he was allowed to go home, this Tiny Light had to undergo three separate surgeries, including one where he had to be intubated. This led to Maximilian’s severe oral aversion and as a result, he refused to eat. Despite the efforts of his parents and medical professionals, the only way they were able to feed him was through a tube.
As a message to other parents in similar situations, Maximilian’s parents say to “hang on. It’s a heck of a ride and it’s not always easy but it gets better...it’s okay to take time for yourself...it’s okay to ask questions about your child’s care and advocate for them, it’s okay to say no to visitors, it’s okay to ask for help and it’s okay to be frustrated, scared, angry, sad or whatever else you’re feeling.”
Maximilian is now two years of age and after undergoing an intensive hunger-based feeding therapy, he has been eating through his mouth for 5 months. He still struggles with gross motor and expressive speech delays but his parents continue to be inspired by his fighting spirit, positive personality and “the strength of the human spirit to overcome monumental obstacles.”
Story by Stephanie Bond
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