Presley’s CDH Story

At forty weeks and six days pregnant, my OB decided it was time for induction because Presley did not want to come on her own. After a full day on the highest dose of pitocin, we decided Presley needed an eviction, and we went in for an emergency C-section because we were not having a good time. After a while, a doctor knelt beside me and said, "baby is having a hard time breathing," which is every parent's worst nightmare. They brought in the respiratory team, followed by doctors at Primary Children's via telehealth. Presley immediately went into respiratory distress after birth. When they x-rayed her chest, they discovered her left-sided CDH and she was immediately intubated. She was life-flighted to Primary Children's, where she was stabilized and had surgery three days later. Presley had a type B mild defect that was able to be fixed without the use of a patch. She was extubated four days later, and we were finally able to hold her for the first time. She was not a fan of her NG tube and pulled it out twice! They decided to try feeding her by mouth, where she excelled, but we learned her swallows were a little uncoordinated, so she was at a high risk of aspirating. They did a swallow study and decided she needed thickened milk for dysphagia. She exceeded every goal they made for her and could come home after 23 days on only nighttime oxygen and thickened liquids orally! She had 62 different doctor appointments in her first year, making me very busy with at least one doctor's appointment a week and some weeks more. Her appointments included pulmonologists, cardiologists, and speech pathologists for feeding therapy. Since then, she has been cleared by all of these specialists and now only has to get chest x-rays once a year. She is now a feisty two-year-old who keeps us on our toes. She loves to do anything in the water, including swimming, going to the lake and feeding the ducks, or, when we are lucky enough, going to the beach! She loves being outside, especially if her cousins are with her! She has not had any prolonged effects of having a slightly smaller left lung which has been such a blessing. We cherish every moment we get with Presley because it is one more moment we were not guaranteed, and that makes every second that much more special!