Walker and I brought Dean home after the easiest birthing experience I could have asked for (I actually slept through the majority of my labor) and quickly realized something was off. When he was four days old we ultimately decided to take him to the ER at Arkansas Children’s NWA after he had become increasingly jaundice and began refusing the bottle. He also had not had a bowel movement at this time. During triage, x-rays revealed a blockage in his intestines and the nurses discovered a small amount white stool after externally examining him. It was quickly decided that he needed to be air lifted by helicopter to Arkansas Children’s in Little Rock and thus began the most frightening night of mine and Walker’s lives. We followed Dean by car to Little Rock while receiving text updates from the air by his incredible flight nurses (seriously the most badass team) and soon after our early morning arrival were told our now five day old needed an emergency exploratory laparotomy that resulted in a partial bowel resection caused by meconium ileus (when the baby’s first stool, meconium, is thicker and stickier than usual). Our God-send of a surgeon performed the three hour operation flawlessly and then afterwards asked us if we had any history of Cystic Fibrosis in our family. We did not, and my only connection to the disease at that time was an over-dramatized Grey’s Anatomy episode. We were explained that meconium ileus is a symptom of CF and there was an 80% chance that Dean had it. Later blood tests and a sweat test confirmed that he does in fact have the DDF508 mutation associated with Cystic Fibrosis. Our worlds were turned upside down. We get told often by those that are aware how strongly we appeared to have handled that excruciating month long post-op hospital stay as brand new parents with such grace. What no one saw though are the sleepless nights spent crying, yelling at the top of our lungs, or both, all while newly medicated with antidepressants to take the edge off. We spent a long time grieving the “child we lost”. The picture perfect child that every parent dreams of having… but in the midst of all of that chaos Jesus sent us sweet reminders that none of what happened or what is yet to come is beyond what we can handle. Some of the ways He did this were through many of you; when your prayers, texts, phone calls, acts of service, and donations left us in tears all while restoring our faith. God has chosen us to be Dean’s parents and help him navigate this disease. Every night I thank Him for giving us this responsibility.
Dean is now two years old old and THRIVING, but we know his fight is not over. You can help us put an end to his battle by donating today so that we can make CF stand for Cure Found. If you are unable to donate, prayers are always greatly appreicated. Through God's power, love, and mercy we believe that Dean will have an impact on this world.
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IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated July 5th, 2023
The CF Foundation is committed to ensuring the health and wellbeing of individuals attending Foundation events. Individuals attending CF Foundation events must abide by the Foundation's Event Attendance Policy www.cff.org/attendancepolicy, which includes guidance for event attendees living with cystic fibrosis.