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