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Parent Support for Retinopathy of Prematurity

Meet Daneen, Preemie Parent Mentor

My preemie(s) was born at: 23 weeks
Parent of Multiples: Yes
Our NICU Journey included: multiples pregnancy, triplets, preemie loss & grief, heart conditions, laser eye surgery, extreme prematurity.

I can remember having never been so exhausted in my life. I can remember how I thought I would die from grief but I did in fact survive it. That was my experience with premature birth and then loss.

There are so many things new parents of preemies find out. That you are your child’s advocate. And after the shock of the situation wears off, that you can be involved in your preemie’s care. Every single day will be different. People will ask so many questions and want to do so much to help – but it’s okay to say no when it feels overwhelming. However you handle this experience, it is okay. Every parent of a preemie handles this differently.

I want parents to know they can do something for themselves every single day. It may sound strange but there are things you can do. I listened to relaxing music during rides to and from the NICU, put my pajamas on when I came home for two short hours before going back to the NICU in the evening, and I wrote every day about what was going on with my child.

I became a Graham’s Foundation preemie parent mentor because I felt so alone in my own journey. It was an isolating time. In the beginning, I did not know if my surviving triplet would live. Fear enveloped me constantly. I would of benefited from a program like this, so I want to give back and help others.

Retinopathy of Prematurity (ROP)

Retinopathy of Prematurity is common in premature babies, who often receive treatment with oxygen and may have either an excess of oxygen or too little oxygen in their blood. This results in the abnormal growth of blood vessels in the retina, which can lead to vision problems or blindness. Some cases of ROP correct themselves while others require surgery, and the variability of ROP can be frightening and frustrating for parents.

 

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