An Important Discourse

This opinion piece appeared in the New York Times this week. It is an important topic for those with babies in the NICU.

Let me start by stating that if I could go back in time with present knowledge, I would not change a thing.

However, when Charlie was in the NICU, I would have liked to been informed of more than merely the mortality statistics. It would have helped to know the possible issues my baby would face and not all preemies catch up by two.

I feel that I could have been better prepared. It would have spared me of crushed expectations. Prior to Charlie’s first year home, I thought all preemies catch up by two. I anticipated a “normal” baby experience upon Charlie’s homecoming. After so much heartbreak and loss, NICU parents deserve more information and discussion.

NICU moms, what do you think about the piece?

arb1

Charlie enjoyed the lovely weather today at the state arboretum.

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

7 responses to “An Important Discourse

  • judy

    This is such a hard question. For me, Agnes had really good odds of survival when she went to the NICU: decent birth weight and no problems that didn’t present with obvious solutions. She did need surgery, a vent, blood transfusions, and she will require ongoing therapy, but I believe she will have a happy life. If she had arrived 10 or 15 weeks sooner than her 37, I don’t know what I would do. It’s hard to know what constitutes “extreme” life-saving measures when everyone desperately wants the patient to survive. I guess if there is a chance the baby will eventually be well enough to go home, I would hope everything possible would be done to support that baby’s life.

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  • Amber Perea

    In the beginning of apparency of Jp’s delays…I used to rage that no one warned me, really. No one truly sat me down and told me what I was possibly (which came to fruition in our case) in for.

    Though now, I don’t know. It may have “spoiled” some of that purity of infancy. Maybe that bliss with uncertainty was better than unfounded fears.

    Perhaps?

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    • woodra01

      Charlie came home on a formula that she had an allergy to. For us, the normalcy never started. Looking back, it was like chasing a carrot on a stick.

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      • Amber Perea

        Neosure? That one made Jp projectile vomit like something out of a horror movie for a YEAR. 😉 I never said normal…just not petrified of what ifs that may not happen. For some, “it” doesn’t. For some of us…well, you know. 🙂

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      • woodra01

        HAHAHA! Horror movie projectile! It was milk protein in general. When she was readmitted to the hospital for that, an observant doctor noticed her torticolis. That was the beginning of her movement problems and her missed milestones.

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  • Alyssa

    I was glad to see this article, as I agree there absolutely needs to be more awareness and better counseling. I was disheartened by the comments to the article, but moreso I was disheartened that the reaction of many in the preemie community has been so visceral to the conversation because of those comments. It was a parting of seas of sorts. Instead of talking more about how we can better inform parents in the scariest days of their lives to make decisions that are best for them and their child, the focus has shifted to one of misunderstood anger.

    I hope the conversation can shift back to understanding how parents can be better informed and how they can be supported through their choices. No one has a crystal ball and can tell us what the future holds, but fact based, consistent and compassionate information is lacking in many situations.

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