Ava Songer

Ava’s Story

“No matter what we loved her unconditionally and would do anything to help her.”

Ava Songer, Trisomy 13 by translocation, 04/01/2016, Robinson, IL

AvaAva Lynn, my beautiful miracle baby. Born at 38 weeks, 5lbs 9oz. She had respiratory distress at birth and was transferred to a larger hospital. Meconium aspiration was thought to be the reason for the respiratory distress but after 4days of oxygen therapy she remained tachypenic which required more testing. The neonatologist she was seeing requested chromosome testing due to her having small head, small misshaped ears, and an extra digit on her left hand. Feeding difficulties, a large PDA, VSD, and teathered spinal cord aided in the need for testing. A few days later we got results, and devastation set it… Trisomy 13. We were told to enjoy our time with her because we only have a few days to weeks with her. We were sent home, scared, sad, anxious, worried… So many mixed emotions I could go on forever. No matter what we loved her unconditionally and would do anything to help her. So we requested a feeding tube and supplemental oxygen as well as an O2 monitor. My miracle baby is 4 months old now and doing great. She still has a feeding tube and will be scheduled for g tube surgery within the next month (can you say anxiety attack)! She has not needed any supplemental O2 and we are no longer needing to monitor O2 sats. She is working on rolling over, holding her head up, and beginning to coo! I’m so proud of how strong she is. Mommy, daddy, and sissy love her to the moon and back a trillion times!