The McGrail Family

Scroll down to see updates as the McGrail family progresses in their CDH Journey! (All updates are written and given by parents with consent)

Update 12/3/24

Charlie Jane McGrail (CJ) was born at 33 weeks and 6 days with Congenital Diaphragmatic Hernia and CPAM (congenital pulmonary airway malformation) in her left lung. I (mom, Dorothy) have been relocated to St. Pete since September 20 due to preeclampsia. My husband (Grant) had to stay behind in Omaha until CJ was born to work and take care of our cats and home. I am a teacher and receive no paid parental leave, and Grant as the father receives 6 weeks of paid parental leave. Without my paycheck we have been struggling to pay rent and cover our bills like our car payment and wedding loan (we have been married for a year and a half). CJ’s CDH was diagnosed at her 20 week scan. Her stomach, bowel, liver, and spleen were up in her chest and she was missing about 82% of her diaphragm. She was given a 2/3 chance of needing ecmo, but miraculously didn’t need it! At 6 days old, she had her repair surgery which went so well! The hole in her diaphragm extended to her trachea which made the surgery more difficult and puts her at a higher risk for re-herniation later on. She is still on a ventilator and is slowly weaning off of it. She is also working on weaning off of the fentanyl drip. Our little fighter is defying all odds and doing so much better than anyone had hoped for at this point! She is absolutely beautiful and came out with a head of hair nobody expected! We anticipate being here at John’s Hopkins until March. I (mom, Dorothy) will have been relocated for 6 months and without a paycheck for that long. CJ loves being swaddled, pats, and her purple paci. She does NOT like anything that requires her to be un-swaddled, baths, and diaper changes. We are so grateful to have been approved for your grant, and deeply honored to keep Eden’s legacy alive.

Update 12/31/24

Charlie Jane is doing better than we had ever expected! She got off of CPAP and is thriving on her nasal cannula. We struggled with reflux for a while but seem to be doing better now. The only challenge we are facing now is that her oxygen saturation dips randomly into the low 70s. Charlie’s doctors think that this is just part of her learning how to eat, breathe, and swallow which is hard for these babies! All in all, our sweet girl continues to amaze her doctors! For a 33 week preemie with a grade D defect, nobody expected to begin conversations about discharge after just 5 weeks in the hospital…. But we got our discharge check list!!! It’s very long and will take a while to complete, but we have so much hope for our future with little miss Charlie Jane! Thank you to everyone that has loved and supported us through our CDH journey, we cannot wait to be home!