The Hospital
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Microaggressions: “We need more [BIPOC] representation in the NICU.”
Expressing emotion in front of the medical team, as a Black parent
NICU: All of this information is trickling in backwards. “We had to advocate fiercely for a care conference and for palliative care.”
There was a lot of veiled language around these decisions. What does ‘goals’ even mean? We had to find other parents to get a sense of what to expect.
A dad reflects on living in the hospital. We just lived hour to hour.
In the hospital: I felt like nothing really made me feel better.
Her medical team knows what we’ve been through and gets it. They become like friends and family.
From diagnosis to death: “It was 8 months of an incredible psychological terrain.”
I convinced myself my job was to be competent. I was ‘at the table’ and it was a lot of pressure. It took a toll.
“I internalized that to be competent meant not to cry; You do what you think is needed to get good care for your child.”
My grief was exacerbated by the trauma of being in the hospital in a really intense setting.
Getting out and walking was a saving grace.
My Present-Self message to my Past-Self: “You are doing a good job. You can take a rest.”
Cardiomyopathy: A mom on arriving on the cardiac floor and finding community.
A New Diagnosis: Finding Your Bearings
The hospital is like a foreign land
It’s hard to know which doctor is in charge.
Parents get exhausted by the steady stream of specialists in the room.
It’s exhausting to sort out all the different perspectives from specialists. Parents can ASK FOR HELP.
Getting Clarity—Parents can say, “This is what I’m worried about. Should I be?”
Hospital teams don’t want families to be confused.
If a parent feels angry or upset, ask for help.
All the people who helped me when we were in the hospital with Jack.
There will be communication challenges. If you’re wondering, just Ask.
Providers can behave differently on different days. But they always care.
The Flow of the Day: Caregivers Change Shifts
Self-Care: Providers will encourage parents to get sleep and get some air.
Self Care: Finding help in the hospital
Parents feel pressure to be “liked” by their child’s medical team, but need to feel comfortable expressing their concerns.
For Providers—Self care is important for providers too!
For Providers—Ask families about their life OUTSIDE of the hospital, to better understand their big picture.
For Providers—Families can be quite different depending on when you see them.
For Providers—Acknowledging feelings of failure. Encouragement to honor the care you and others have provided.
Should the Providers go to the Funeral?
For Providers—Child death impacts us and takes a toll.
Can we help you:
Related
From our Blog:
- Special Days Are Hard In the Hospital
- Holidays Have a Way of Bringing Up Big Questions
- Seeing the Complexity in Holidays
- Your Voice - Family Advisory Council
- The Season of Giving and Receiving
- Smellivision
- What’s the Deal with Your Kid? A Rare Dad’s Guide to Minimizing Hospital Hassles
- Finding HOME in the NICU and the Heart
- Not Home
- HOME
- Not Home for the Holidays
- Tis the Season to be Jolly???!!!
- A Chaplain’s Personal Reflections on Holidays in the Hospital
- Special Days Are Hard In the Hospital
- Holidays Have a Way of Bringing Up Big Questions
- Seeing the Complexity in Holidays
- A Letter to Medical Residents
- The Other Side of Innocence
- Your Voice - Family Advisory Council
- CPN's New Hospital Unit for Parents
- Pediatric Ethics Committees: An Under-Used Parent Resource