PPHN? or any other moms with babies who have respiratory problems?

cassafrass • .

I'm not sure how active this group is but I'm going to post anyway. My baby girl Kaylee was born friday 1/5/2018 and has been in the nicu since she was about 3 or 4 hours old. They told me last night they believe she has Persistent Pulmonary Hypertension of a newborn...which is causing a lot of breathing problems and trouble maintaining her heartrate. The hard part is there is no way to know when or if she'll pull through this and be able to adjust to life outside the womb. She was born at 38+4 so I definitely wasnt expecting anything but a healthy baby. She's currently on 2 liters of 35% oxygen...increased from 25% last night. She's also ordered as little stimulation as possible so I am no longer able to nurse her or touch her...which feels so cruel but I know it's for the best. I'm being discharged today so I'm an utter mess right now. I guess I'm just looking for words of encouragement from other moms who have been in this position.