“Fear of Leaving the NICU”: my guest post on PreemieBabies101

It’s been nearly three years. Three years! Since we brought him home from the hospital. It was terrifying. I didn’t feel well equipped in case of an emergency. I look back on how far I’ve come–we’ve all come–and now I hope that this guest post encourages other families too.

Today over at PreemieBabies101 I’m talking about my fears of leaving the hospital and what helped prepare me for caring for Nathan at home.


The days leading up to his discharge were more difficult for me than the length of his stay. I was scared to take him home.

Up to that point, we had witnessed him needing to be resuscitated three times. We had helped him recover through a difficult surgery. And we were in the beginning stages of adding several specialists to his care plan in attempt to understand his compromised body systems–in the NICU the specialists came to round on him rather than us having to haul ourselves to their offices and clinics.

NICU life was hard, especially because I had another son at home and my time was torn between the two. But as much as it was hard, it felt safer for my  baby to be inpatient. Taking him home terrified me. I felt completely incapable in case of another emergency. I even asked one of the neonatologists if my baby could come back to the NICU (instead of going to the floor or PICU) if things didn’t work out so well at home. I was completely serious.

At that point he told me, “We aren’t going to send him home until you’re ready.”

Now if that were true, my son would probably still be in the NICU almost three years later, because I’m such a scaredy cat. To his credit, the neonatologist and his team did formulate a plan and provided me with resources to help make the transition to life at home much less scary.

If you are a NICU mama, or mama to a medically complex kid, read the rest of the post, Fear of Leaving the NICU, for some of the things that helped me tremendously in going home with my baby.

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

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