NICU
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NICU: What does the miracle look like?
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A mother on learning she needed to take care of herself while her baby was in the NICU.
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A NICU mom on learning to recognize that the experience was traumatic and that she has PTSD.
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A poor diagnosis in the NICU, delivered poorly: “They were trying to give us hope. But they hadn't yet delivered the news that we were in a hopeless situation.”
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NICU: All of this information is trickling in backwards. “We had to advocate fiercely for a care conference and for palliative care.”
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Deciding which parent stays in the NICU.
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My evolution as a new parent (and heart mom) has been enormous. At some point you have to manage the reality of your life.
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Telling our son’s story
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We were trouble-shooting with the doctors and the nurses.
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It’s easy to get overwhelmed; so being an integral part of your child’s care team allows you to have conversations and know why you’re having them
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Bridging the Gap to the medical staff. It was like being in communion with each other.
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Being your child’s advocate: It connects you to all things greater.
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Our son. Our effort; His edge of suffering; the Outcome
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Being our child’s advocate: “Every decision that was made medical was absolutely necessary. And then we knew when his body had endured enough.”
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Parents give tips on being in the NICU: Staying present, creating routines, holding your child as is possible; pumping
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Being in the NICU: Taking turns going home
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Our son’s last day: “We knew we had done everything possible for him. It was right, despite how wrong it was.”
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Parents worry about the impact of child death on the staff
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Beginning parenthood in the NICU: There wasn’t enough support for us.
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