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Parenting a School Aged Preemie

Meet Anne, Preemie Parent Mentor

My daughter Eliza Grace is now nine years old and prematurity is still very much a part of our lives. After her early birth she was in the NICU for 100 days and developed, among other conditions, BPD, ROP, NEC, and AOP, as well as having a PDA and multiple episodes of sepsis. She was ventilated for 67 days. What I remember most is the complete uncertainty that each day brought – it wasn’t until she was close to discharge that I saw a light at the end of the tunnel. Despite the uncertainties I celebrated each and every “milestone” she met. Eliza did not learn to eat solids until she was almost five, after feeding therapy, OT, speech therapy, behavioral therapy, and multiple diagnostic tests. Despite years of therapies, Eliza continues to have fine and gross motor delays, for which she still receives OT and PT at school. And Eliza has recently been diagnosed with both ADHD and anxiety. Although this is a new road for Eliza and myself, we are both learning new coping skills.

As a single mother by choice, I know how challenging it can be to parent a preemie without a co-parent helping to make decisions and handle the day to day. I know that many preemies are discharged from Early Intervention only to end up needing services again when they are school age – and unforeseen issues can arise in the elementary school years, particularly with reading and math. I have attended many IEP meetings. Back when Eliza was in the NICU in 2006, there was no preemie parent support group at the hospital until we banded together and founded one with the hospital’s approval. In my role as a Graham’s Foundation Preemie Parent Mentor, I want to offer that same peer to peer support to parents at all stages of the journey.

Parenting a School Aged Preemie

The prematurity journey doesn’t end after a preemie is discharged from the hospital – the lasting impact of premature birth can be part of a family’s experiences for years or even for a lifetime. Prematurity can have numerous lasting effects – many of which are invisible – and these can change how both parents and kids approach education.