My daughter Lily is 11 months old with Pierre-Robin and has had her trach since she was 4 weeks old. Â*We were scared to death of the trach, but we were so relieved to see her breathing easily, growing, and developing. Â*She wasn't doing any of that before her trach. Â*As much as I hated her having to get the trach, it saved her life and keeps her airway safe. Â*Yes, it is scary, inconvenient, stressful, weird, sometimes icky, uncomfortable, etc., but all of that is much better than watching our sweet Lily struggle to breathe. And yes, we're finally getting to the point where we can truthfully say that it does get better with time.
Please email me if I can help with anything. Â*Good luck and we'll be thinking of you and Andrew on Tuesday.
All our best,
Erica and Lily
Our fabulous Lily was born 5-26-01 with partial trisomy 7q, Pierre-Robin sequence, VSD, GER; had trach, GT, Nissen at 4 weeks, cleft palate repair at 6 months and 18 months. Decannulated 11-15-04. Proud big sister to Benjamin 10-10-03, baby Vivienne 3-5-07!