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Breathing Problems/Lung Issues in Premature Babies

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.

Supporting Preemie Parents in Difficult Times

As we work together through these challenging times, you may have questions about how Graham’s Foundation is supporting our preemie parent community. Fortunately, because our support programs have always been delivered virtually, we are equipped to deliver all of our programs today, tomorrow, and into the future to continue to meet the psychosocial needs of parents.

Our Care Packages offer helpful tips for self-care and navigating the NICU and going home (our supplies have been in stock since before the COVID-19 outbreak), our MyPreemie app provides critical preemie-related information and helps parents journal their NICU experience, and our three dozen trained mentors are available to lend an ear and offer words of advice and encouragement.

In such a difficult time, it is more important than ever that we are here for the most vulnerable members of our community and Graham’s Foundation is ready. We are grateful to our volunteers and the individuals and industry partners who make generous donations that enable us to develop and deliver our support programs.

In Gratitude,

Nicholas Hall, Founder

Graham’s Foundation