Hello all. My son was born at 29 weeks in Jan and we've been living with the possibility of a trachy for all that time because he has a small jaw that compromises his airway. Now it seems it's unavoidable owing to sleep apnea, but he's just found his voice in the last two weeks and is a huge chatter - and I'm gutted that I'm going to lose this form of communication with him.
How do others cope? Have you used baby signing? Speech valves? Would be really helpful to hear from others. He's been borderline for the trachy all this time (he's had a nasopharyngeal airway since birth) and we thought we could bring him home with this until his sleep study showed his oxygenation to be poor last week. I know he needs the trachy (breathing of course comes first!) but I'm grieving for the loss of his voice, and am really upset that I won't here it any more.....