In February 2013, after just 24 weeks of pregnancy, God decided that it was time for Malachi to be born. Malachi came out without a heartbeat at just 1 pound 12 ounces. After 15 long minutes of CPR he began to fight, and hasn’t stopped since! The oxygen deprivation caused his brain to hemorrhage on both sides resulting in Grade 4 bleeds (the worst on the scale). We were told that Malachi’s quality of life would be very poor and we were given the opportunity to discontinue life saving care. Jake and I have always felt that Malachi’s future rests in the hands of God and we chose life for our son.
Our road is not easy and Malachi has many challenges. His main diagnoses include Hydrocephalus with a VP shunt, Hypoxic Ischemic Encephalopathy, Cerebral Palsy, Cortical Visual Impairment, Epilepsy, Severe Reflux, and multiple orthopedic abnormalities. He has had 15 surgeries and several hospitalizations but has continued life with a smile on his face. Although he is very cognitively and developmentally impaired, he is still a very intelligent little boy who can express his likes and dislikes and communicate in his own way. And Malachi loves music and people with a passion.
In November 2017 we welcomed baby brother Levi into the world at 34 weeks gestation. Shortly after his birth he was taken to the NICU where they discovered he has paradoxical vocal cord dysfunction (also called bilateral vocal cord paralysis). Since the cords do not move it makes breathing very obstructed and difficult. The typical treatment is a trach. And since the cords can’t close to protect his airway, feeding is a safety concern so Levi has a g-tube. Doctors also discovered several small areas of brain damage leading to a diagnosis of Hypoxic Ischemic Encephalopathy which has also brought a diagnosis of diplegic cerebral palsy. His CP affects his legs, ankles, and core. ￼￼ it has also started to destroy the nerve in his left eye and he is losing vision in that eye.
￼ Weeks after his birth we ￼flew Levi to Cincinnati to try several experimental procedures to avoid a tracheostomy. After 26 procedures and surgeries and a 4.5 month stay in the NICU it seems that we have succeeded but his journey is still far from over as this is a long term medical issue. There is a 50% chance his vocal cords will wake up in his lifetime so we are praying to be on the winning end of that statistic.
This blog serves as my personal journal so that I can remember how far the Lord has brought the Carroll family. Some entries may bore you while others give you more information than you care to know, but it has been an outlet for me to put my thoughts into print. Thank you for taking the time to pray for more miracles for Malachi and Levi.
To view journal entries from the first three years of Malachi’s life, visit https://www.caringbridge.org/visit/malachicarroll