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Preemie Parent Advocacy

Meet Michelle, Preemie Parent Mentor

My preemie(s) was born at: 28 weeks
Days spent in the NICU: 67
Current age of preemie(s): 25 months
Parent of Multiples: No
Our NICU Journey included: IUGR, SGA, Advocacy for your child, advanced maternal age/geriatric pregnancy, reflux, pediatric endoscopy procedures, child milk intolerance.

I became pregnant at the ripe old age of 36 – considered “advanced maternal age” – and my pregnancy wasn’t a merry-go-round. It was a roller coaster ride, complete with twists, turns, and many ups and downs. I was told that I would miscarry; experienced abnormal alpha-fetoprotein test results; and was diagnosed with intrauterine growth restriction and small gestational age. We knew our daughter Emily would enter our lives prematurely, but we never expected her to come into the world so soon. Having a baby three months early was the most challenging and traumatic experience of my life. It was heartbreaking to leave my baby, who fit in the palm of my hand, in the NICU for 67 days. Luckily as a former Capitol Hill staffer and lobbyist, I knew how to advocate for health policy. I used my advocacy skills in the NICU to advocate for my daughter. If you have a baby in the NICU, you are their number one patient advocate. Focus your efforts on pushing for what is best for your preemie.

Though I’m here to help parents advocate for their babies, I’m also comfortable offering support in the following areas:

  • “Geriatric pregnancies”
  • Hospital bedrest
  • Intrauterine growth restriction (more commonly known as “IUGR”)
  • Small Gestational Age (“SGA”)
  • Reverse end diastolic flow

In addition to being a Graham’s Foundation volunteer, I have a personal blog (http://www.preemieblessings.com) which provides helpful information to parents who have found themselves parenting a preemie.

Advocating for Preemies

Parents of preemies often have to navigate a confusing and utterly new world of medical terminology, surgeries and other procedures, specialty equipment, and therapies – all while watching their babies fight for their lives. They may feel helpless to do anything for their children, but the truth is that moms and dads have many special roles to play in their preemies’ journey. One role is that of patient advocate. It’s not always easy to speak up for what you know is right for your baby but it can make a huge difference now and in the future.

The resources listed on this page have been chosen because as much as all parents of preemies want to do everything they can to ensure their babies get the best possible care, many are unsure how to be a patient advocate or need support to find the strength to do so.

Meet our other Preemie Parent Mentors