November 2020 – After the NICU

As many families have discovered, the effects of preterm birth are oftentimes, lifelong. The majority of research today relates to the NICU time period with minimal to no research on patient outcomes after the NICU through adulthood. Here are some questions preemie parents should be asking moving forward:

 

  • What questions should I be asking our pediatrician? Build up a relationship with your pediatrician. Don’t be afraid to ask questions related to health concerns and any behavior issues or delays that do not feel right to you. Just as in the NICU, you are your preemie’s advocate so ask, ask, ask!
  • Is it noted in my preemie’s medical records to look for potential health/behavior issues related to preterm birth? Make sure your medical team is well versed when it comes to your preemie’s health and that they know what they should be paying attention to due to preterm birth.
  • What should I be looking for behaviorally and health-wise? Keep in close communication with your preemie’s Early Intervention Specialist as they are trained educators who work with kids from birth through age four to address developmental delays. Early intervention provides assistance at the first warning signs of educational difficulty to prevent further impediment.
  • Where can I find support as a preemie parent post NICU? Just as you needed support during the NICU, it is just as important to find your support team as you begin your journey away from the NICU. The Inspire Network is made up of preemie parents just like you, many who are no longer in the NICU and are dealing with a medical and/or behavioral diagnosis due to preterm birth. Ask questions and feel supported on this journey. https://www.inspire.com/groups/preemie/ Special Note: This private, safe and secure community is moderated by our own Deb Discenza.
  • How can I make a difference? Learn more about Preemie Crystal Ball, a research portal being developed for the preemie community through the lifespan of pregnancy to birth to childhood, adolescence, adulthood and the geriatric years. Crystal Ball Health is working to create a preemie registry that will power the research to provide better patient outcomes – in the NICU, throughout childhood, and into the adult years. Join the movement! https://crystalballhealth.com/

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