My Painful Misunderstanding of the Transition to Life After the NICU

January 11, 2021

My baby’s first year was far different from what I was led to believe life after the NICU would be, and it caught me by surprise.

life after the NICU, NICU baby, NICU grad

This story was originally published in January of 2014 and has been updated.

During my baby’s three-month NICU stay, I quickly learned the many adages that are passed around the NICU. Two of those that would have spared me a lot of sadness were “Every baby is different,” and “Don’t compare babies.”

Essentially, they possess the same significance. I suppose the message is important enough to justify the need for two sayings. Nevertheless, the intended meanings were lost on me. This is how:

life after the NICU, NICU gradMy baby arrived into the world the day she reached 26 weeks gestation. She weighed 790 grams and was 33 centimeters long. In addition to many other complex emotions, I was terrified.

I can not count how many times well-meaning people shared narratives of life after the NICU, including other micro preemies that “caught up” quickly and easily. Doctors often weighed in on the matter with stories of their past successes with similar babies. I had met parents of a 26-weeker from the same hospital that “caught up” in her first year.

Despite a handful of scares and terrifying discussions, my baby had a rather uneventful three-month NICU stay. She did not come home on monitors, oxygen or with a g-tube. I thought she would be another baby to escape prematurity unscathed just like every other 26-weeker I had been told about. I believed the preemie experience would quickly become part of our past once she came home from the NICU. I had no reason not to.

A year later, I feel stupid for thinking that.

My baby’s first year was far different from what I was led to believe it would be, and it caught me by surprise. There were new diagnoses, demoralizing readmissions to the hospital and countless appointments with specialists. I went through the grieving process again over the loss of regaining the “normal” baby experience.

life after the NICU, NICU gradHowever bumpy the ride, it is our story.

I wish I understood that “every baby is different” earlier. To me it means an issue that is devastating for one baby may be minor for another baby and vice versa. Countless medical concerns lie on a spectrum. The severity can fluctuate from baby to baby. Every baby, even those with identical diagnoses, has their own unique journey.

Progress is personal. Everyone’s story unfolds differently. 

Rather than dispense cliches like sanitizer, it would have been more helpful for someone to have a realistic discussion with me about what to expect after coming home from the NICU. I wish I would have been prepared to deal with more than the best case scenario. I’ve come to realize everyone’s future is somewhat unknown, but it is even more so with NICU babies.




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