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Loss within Multiples and Micropreemie

Meet Johsie, Preemie Parent Mentor

My preemie(s) was born at: 23 weeks 3 days
Days spent in the NICU: 120 days
Current age of preemie(s): 6
Parent of Multiples: yes
Our NICU Journey included: Loss of a multiple/withdrawal of care
ROP/laser eye surgery, NEC, IVH, feeding difficulties/reflux

What I remember most about my NICU journey is feeling lost in a situation that was out of my control and lonely. I took every day in the NICU one day at a time and made sure that I cleared my head daily and went for walks outside. Gradually my son grew stronger and I became more resilient.

My advice to other preemie parents is:
-Spend as much time as you can with your baby in the NICU. Sit next to his/her isolette and read baby books for neurodevelopment, talk, touch and hold your baby as much as allowed.
-Learn as much as you can about prematurity and your baby’s diagnoses so you are an informed decision maker and better advocate for your baby.
– Don’t be afraid to ask questions of the NICU staff and providers since they are there to help the families as much as your baby. Get to know your baby’s primary nurses and they will teach you what you need to know to care for your baby when you finally get to bring him/her home.

I want to reach out to other parents because I have realized that the only people who really understand what it is like to be a NICU parent is by other parents who have had a similar NICU journey. I have had parent mentors and the resources/knowledge that they provided me with was invaluable. I want to share what I have learned to help other NICU babies thrive and for parents to have less stress and be the best they can be.

Losing a Premature Baby

Having to say goodbye to a preemie far too soon is a tragedy that no parent should ever have to face, but sadly loss is a part of the prematurity journey, too. Nothing can ever ease the pain of losing a child but even so, many organizations, websites, and groups exist to help moms and dads cope.

Micropreemies Issues

The micropreemie journey can be like walking through a mine field for both preemies and their families. The moms and dads of the earliest babies celebrate not only the milestones, but also the minutes. Every hour in the early days is hard won. Every milestone met, a triumph. A micro-preemie parent’s courage and resilience may be tested to the very limits. The struggle may feel never-ending, but it’s important that parents know they are never alone.