NICU
Telling our son’s story
Parents of a baby son who was born with Arteriovenous Malformation (AVM), had 5 brain surgeries, and died at age 3 months, begin the story of the start of his life, from pregnancy to his birth to the sudden emergency event. “That was the first like kind of break that happened internally where we’re sitting there and our baby is dying, that we know of now and nobody has even really seen this before. It humbled, to say the least.”
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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.”
The palliative care team would ask us, “How do you feel about what you just heard?”
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.”
