What do you do when everything you thought being a parent meant gets turned upside down with one diagnosis? How do you deal with the isolation of being a NICU parent?
In today’s episode, I’m speaking with Tyler Simon who works at the University of Chicago Medical Center – which was also where her oldest son Bennett, now five years old, spent the first 4 months of his life.
After a fetal MRI discovered abnormalities at just 19 weeks of pregnancy, Tyler and her husband were in complete disbelief when her water broke prematurely at 31 weeks.
Faced with the decision of having to go back to work 10 days postpartum with Bennet still in the NICU – in order to save her maternity leave days for when Bennett was discharged – Tyler shares with us the highs and lows of their NICU experience.
Tyler also teaches us how to find a community within primary care nurses and medical teams, how to navigate the solitude of NICU parenthood and major surgeries, and shares their post-NICU journey now that Bennet is in kindergarten.
She inspires us to never lose hope and to really celebrate the wins no matter how small or how silly they may feel, “because you never know when the next one will come”.
Key Takeaways with Tyler Simon
- How Tyler overcame the solitude of NICU parenthood.
- The importance of creating your own community with the staff at hospitals.
- How to let go of control and accept things as they come.
- The scary journey of bringing your baby home from the NICU
- Balancing work and parenting a child with disabilities
- Building trust with primary care nurses and medical teams is a win-win situation.
- Knowing when and how to ask for help and allowing others to help you when they offer.
- Never forget that you are the parent and you need to speak on behalf of your child.
- How to deal with the feelings of mom guilt.
- Celebrating the small wins because that is where you’ll find the joy in your journey.
Tyler Simon Tweetables
- “There is absolute joy and progress in achieving things that we didn’t know would be possible.” – Tyler Simon
- “The thing about feeling isolated as a NICU parent is that the only other people that understood anything about the experience that my husband and I were having were his medical care team.” – Tyler Simon
- “Don’t stop hoping. Whether that means hoping for the most positive outcome possible with your child or hoping for a meaningful moment.” – Tyler Simon
- “People come along on our journey that we don’t often expect. They become this connection and world for us, and it’s made me more eyes wide open because where else in my life is there an opportunity for that?” – Jamie Freedlund
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