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One family’s NICU journey

By The Health News Team | April 28, 2020
One family’s NICU journey

Grace Acena navigated her long-term stay in the Sharp Mary Birch NICU and offers tips for families experiencing this unexpected journey.

About halfway through her pregnancy, Grace Acena was hospitalized at Sharp Mary Birch Hospital for Women & Newborns with pregnancy complications. She remained there for six weeks before her son, Ted, was born prematurely.
At 27 weeks gestation and weighing only 2.4 pounds, Ted was admitted to the Neonatal Intensive Care Unit (NICU), where he would spend more than two months.
Grace became a regular at Sharp Mary Birch, where caregivers and staff got to know her, Ted and the whole family. “They were in the trenches with us, and Ted’s wins were all of our wins,” Grace says.
Here, she shares the way she navigated her long-term stay in the Sharp Mary Birch NICU and offers tips for families experiencing this unexpected journey.

Sounds of the NICU

One of the first things Grace noticed were the sounds from machines surrounding her baby.
“All of the sounds and tubes connected to your baby can be daunting,” she says. “It can be traumatic to be around, especially in the first few days or when setbacks happen.”
Grace found it helpful to ask Ted’s nurses what the beeps and numbers on the monitors meant, which tubes did what and what abbreviations stood for.

Caring for a preemie

“Since he was so small, I felt so much anxiety touching Ted, let alone holding him at first,” says Grace. “The nurses encouraged us to participate in his care, in the ways we were comfortable doing so.”
In the early days, this included helping with temperature checks and diaper changes, wiping his eyes and mouth, and skin-to-skin time. The family received guidance from Ted’s nurses, and when they felt unsure, they asked for best practices and real-time feedback.

Scheduling visits with your partner

Managing home and hospital life can be especially challenging. While Grace was fortunate enough to take time off work, her husband would visit daily after his shift.
“The reality is that NICU life is tough, not just emotionally but also logistically challenging, with multiple competing priorities at home and at the hospital,” says Grace. “Repeatedly reminding ourselves that this was an out-of-the-ordinary situation helped us to keep some perspective and be a little kinder to ourselves.”
Grace shares these tips for NICU families:

  • Remember that this schedule is not permanent.

  • Set a daily routine that works for everyone.

  • Communicate clearly and frequently with your partner about schedules and needs.

  • Use social media to provide mass updates on progress, so you can avoid calling multiple people or fielding many questions.

  • Have one person in the family act as your liaison for updates to others.

  • Rely on your "village.”

“We don't have much family nearby, but we had friends who were generous enough to help walk our dogs, bring us food and encourage us when we were running on fumes,” says Grace.

Holidays in the NICU

While not ideal, the Acena family made the most out of their Halloween celebration in the NICU. Unable to trick or treat, they coordinated a family costume instead.
“As a preemie, the outfit options are limited,” jokes Grace. “Although, I’ve been told that Build-A-Bear outfits fit preemies pretty nicely.”
Grace and her husband wore Mario and Luigi onesies and decorated a preemie onesie using puff paint for Ted. While it wasn't their original plan, they were able to dress up in a family costume, snap a photo and have that memento as their first holiday together.

Preparing for baby going home

The decision to send a baby home is typically determined day by day.
“Once our son's feeding tube was out, we were told it may be a couple days until he could be released, assuming there were no events for five to seven days,” says Grace. “After 68 days in the NICU, this last leg of our journey felt so quick, and Ted was able to leave when they expected.”
Grace found time to get Ted a going-home outfit, including a graduation cap.
“The staff, nurses and doctors at Sharp Mary Birch are one of a kind,” says Grace. “Not only are they experts in their fields, but we felt Ted was truly cared for, and that provided us with significant peace of mind when we weren't with him at the hospital.”

Learn more about
pregnancy and childbirth care at Sharp.

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