About Me and Sully

Sullivan (Sully) Ross was diagnosed with CDH during an ultrasound at 16 weeks. I developed severe polyhydraminios and was hospitalised for threatened preterm labour at 29 weeks. I started this blog during my 2 month hospitalisation to share our story with friends, family, and other expectant parents. Sully was born via elective cesarian at 37 weeks and underwent surgery to repair his diaphragm at 10 days old. He had a patch repair (using gortex) because most of his diaphragm was missing. We made the heart breaking decision to withdraw ventilator support when Sully was 3.5 months of age and he passed away. Admittedly, I leave tonnes of gritty details out about what it is like to have a baby ventilated in ICU - and also the discussions with the medical team that led to the decision to withdraw life support. Someday I will go back over this blog and fill in the gaps. As I write this update, it has been just over 5 months since he died and the numbing shock has just lessened and I am finally able to feel the pain of grief. I still take one day at a time and miss Sully immensely. Please feel free to email me with any questions. taramarieross@gmail.com. Thanks for reading, Tara