Advocating in the NICU with Micha Clark

In this episode, Micha and I discuss:

What are common experiences for families who end up in the NICU?

• The one universal experience is that no one wants to be there, and they want to get home. 

• They are all similar in their trauma and how the experience changes them 

• They feel helpful, frustrated, ill-prepared, annoyed, disappointed, and are grieving.

Why is it important for families with NICU babies to know how to advocate for themselves?

• Advocating is important for all parents - not just NICU parents

• 1 out of 10 babies will end up in the NICU

• An essential reframe is this: NICU babies are affected by their time there. Their development doesn’t pause just because they are there

• We must take into account the neuro-developmental outcomes of all babies

What are things parents might have to advocate for?

• Skin-to-skin is the most important 

• Early breastfeeding, even just nuzzling or allowing baby at the breast, is beneficial

• Making each feeding experience positive is important for future feeding 

• Developmental care should be considered too; these experiences, like diapering, should be positive

What are your best tips for advocating for your baby in the NICU?

• Like the providers have a goal, parents should have a daily goal, and those can be conveyed to the care team

• Have a NICU journal 

  • Journal about nurses, weight, goals, celebrations, and questions

• Insert yourself into rounds

  • Join the daily and weekly rounds and show the team that you know about family-centered care

• Ask questions

  • Ask clarifying questions 

  • Tell nurses when you don’t know what something means

  • If making a decision, ask the burdens and benefits (instead of pros and cons) 

  • Ask for more time to consider if something isn’t an emergency 

• Trust your gut

How can you support someone with a NICU baby?

• Have loved ones stock your fridge / freezer

• Communicate with your loved ones what you want, like if you need them to listen or give advice or bring you something 

• Create a care plan for other children at home, if you have them Ask family to give gift cards while you’re in the hospital 

• Avoid unhelpful comments like “at least your baby is alive”

What is your advice for transitioning home with a NICU baby?

• Ask the neonatologist what you might need to work on and if early intervention is necessary

• Remember that you and your baby will need to adjust and need time to decompress once hom

• Don’t wait to things to become a problem, habilitation over rehabilitation

How can people connect with you?

Connect with Micha on her Instagram or website.

Enjoy the episode on Spotify or Apple Podcasts!

Micha Clark is the founder of Micha Clark, LLC- a parent coaching business specifically for high-risk pregnancies and NICU parents. She holds a Master of Science degree in Communication Disorders. Is a licensed and board certified Speech-Language Pathologist & Neonatal Therapist, with 24 years of experience.   Wife and mom. Mom to a NICU graduate.