As well as blog I also share my story on inspire.com and discuses with other people their journeys. I came a cross a story today the same as Hannah's; born at the same weight, VSD, PDA, NEC(removal of part of the intestine), pulmonary hypertension, BPD(lung disease) , ect.
The girl is now 4 and a half, still trached. She was off the ventilator for a while but the got pneumonia and lost all her reserve(pretty much started back at the beginning of horrible lungs) and is back on the vent full time. Her mom also brought up how she is so attached to her parents if they are out of sight for a second she freaks.
That makes me so scared of the future. Am I ever going to be able to go back to work? How much extra would you have to pay a trach trained sitter? Is it even worth it making minimum wage? I hope that because she is a twin and will have hailey that will make it easier to leave her if she has hailey with her.