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IVH/Lung Issues

Meet Sarah Leah, Preemie Parent Mentor

My preemie(s) was born at: 24 weeks
Days spent in the NICU: 156
Parent of Multiples: No
Our NICU Journey included: CPAP, oscillating ventilator, chronic lung disease, pulmonary hypertension, ROP, PDA, AOP, grade III IVH, pumping, breastfeeding difficulties, staph infection, hernia repair, supplemental oxygen

I remember how desperately I wanted to be the best mother possible after the birth of my beautiful micropreemie daughter, and how hard it was to try to live the rest of my life while she was in the NICU. She went through so much then and quite a lot afterward! In addition to experiencing many of the issues micropreemies face (like brain bleeds, breathing issues, and ROP), she contracted a virus while in the NICU and had a hernia repair. We had trouble breastfeeding, and I was pumping all along.

I chose to become a Graham’s Foundation Preemie Parent Mentor because the NICU journey can be a lonely one. It’s hard for others to understand unless they’ve been there. I want to reach out to parents to give of my experience, strength, and hope, and to support them through this trying time.

Sarah’s tips for new NICU parents:

  • Whatever you are feeling is normal. Allow yourself to feel all your feelings. This journey is a roller coaster and will bring up many different feelings. It’s important to acknowledge and process them in order to stay present and manage your NICU stay.
  • Now is not the time to focus on draining relationships. You need all the support you can get, so keep in touch with people who can help you and care for you in the way you need to be supported. You need reassurance and care now; you don’t need to be the one providing it for your extended family and friends at this point.
  • Your baby needs happy parents and well-taken care of parents. Replenish yourself physically and emotionally so you won’t feel drained. There’s nothing to feel guilty about – remember to eat, take a break from the NICU when you need it, do something you enjoy every day, and get plenty of rest.

Lung Issues in Preemies

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