Bailee’s Story - Congenital Diaphragmatic Hernia (CDH)

We found out we were expecting our third child on our 6th wedding anniversary! We were so excited to be expanding our family yet again! I went to the 20-week ultrasound alone as my husband was in the field for harvest, and I told him, “it’s just the 20-week ultrasound. There will be at least one more ultrasound that you can go to, and it’s no big deal.” Famous last words, I guess. I had never heard of CDH before that day. Our original OB was wonderful and got us into a specialist the next day. We spent the next 20 weeks attending weekly appointments and meetings with different specialists before Bailee was born at 39 weeks in a pre-scheduled delivery. She has been a fighter since the beginning. (She actually grabbed the needle while the team was doing the amniocentesis!) We knew at that point she had a chance. The first couple of days were rocky as she fought the ventilator a lot. At four days old, she had to be put on ECMO, and we were pretty sure we were going to lose her. She spent 11 days on ECMO, and then five days after coming off ECMO, she had her repair surgery. She was extubated after 31 days and quickly made it to room air. Feeding gave us the most issues, but after nine weeks, we finally got to come home with an ng feeding tube! We had a g-tube put in 3 months later, and once the g-tube was in, she decided she could eat by mouth! We are hopeful that we can take the g-tube out for good within the next couple of weeks! She is still currently on sildenafil, but we are in the process of weight weaning her! Bailee is the strongest person I know, and we are so thankful for her each and every day!