Meet Lorena, Preemie Parent Mentor
My preemie(s) was born at: 25 weeks
Days spent in the NICU: 329
Current age of preemie(s): 4
Parent of Multiples: No
Our NICU Journey included: Trach, ROP surgery, PDA ligation, Advocacy for your child, Breasfeeding, Ventilator, Home oxygen, Airway reconstruction surgery, CLD, Asthma, Decannulation, Speech delays, Vocal cord paralysis.
I am the mom of a former micro preemie little girl, born at 25 weeks gestation weighing 715 grams.
She spent 8 months in the NICU and PICU where she was intubated, required oxygen through a vent during almost the first 5 months; she also had a PDA ligation and laser eye surgery to correct ROP. She was then trached and was then able to begin breastfeeding and later oral feeding. She is now thriving at 2 years old with a temporary tracheotomy due to acquired subglottic stenosis and vocal cord dysfunction due to PDA ligation. She will be having major airway surgery and will be decannulated next year.
As a Graham’s Foundation Parent Resource volunteer, I hope to be a lifeline for parents facing challenges related to:
- Long stays in the NICU / PICU
- Communicating with doctors and nurses
- Empowering yourself while in the hospital with your child
- Making the NICU / PICU experience as positive and empowering as possible
- Intubation
- Vent
- Tracheotomy
- Breastfeeding and feeding orally despite a tracheotomy
- How to prepare to leave the hospital with your trached baby
- Living life to the fullest while caring for your trached baby
- Communicating with your trached baby with sign language
Respiratory Issues in Preemie/Chronic Lung Disease/Breathing Support
Because preemies enter the world before their lungs are ready to breathe, babies born prematurely often require breathing support to survive. Both premature birth and the very life-saving technologies that give preemies a chance can have long-term consequences on a preemie’s respiratory health. Parents may have to make difficult choices about oxygen and steroid therapies. Preemies themselves may have to live with lifelong respiratory issues.
