My name is Aubrey Paulsen and I live in Nebraska with my husband Mike and our two sons; Owen, 3 ½ and Christian who will celebrate his 1st birthday in July. At 20 weeks pregnant with Christian we were sent to a high risk doctor for an ultrasound to look for a cleft palate. Owen was born with Pierre Robin Sequence, which is characterized by a small chin and cleft palate. Our baby did not have a cleft palate but was rather diagnosed with a cyst on his lung. Several weeks and ultrasounds later the diagnosed changed to that of CDH and so the journey of our lives began.
Christian was born July 18, 2011 at 38 weeks with a very large left sided defect. He was placed on ECMO on day 2 where he remained for 15 days. On September 30, 2011 after 12 weeks in the NICU at The Nebraska Medical Center we brought Christian home. We struggle with weight gain, battle reflux and have some issues due to his anatomy but he has made great improvements with feeding and I predict he will continue to do so.
I am new to CHERUBS but am excited to grow into the role of Nebraska State Representative. I believe that for me the only way to make peace with this experience is to support families, raise awareness and advocate for research.