Our precious baby girl Z was born with trisomy 21 and a CHD. She had RSV when she was almost three months old and spent two weeks in the PICU.

When she was almost four months old, she spent another two months in the PICU after heart surgery where she eventually passed after several complications.

During our extensive time, we got to know several staff. One of our nurses was Lili. When we first met Lili, she was on Night Shift. I, as a mom of a medically fragile baby, was scared to leave Z alone after she got sick so quickly with RSV.

Lili explained her previous experience with babies like Z, her knowledge of feeding babies like Z, and walked me through her care plan for the night. Lili was someone I felt comfortable enough with to allow myself some sleep.

We spent a lot more time with Lili on both night and day shift when we came back for heart surgery. Lili was always in the room caring for Z. Making sure she got her CPT, reviewing Z’s plan, and involving me with Z’s care like baths.

Lili was someone my family came to trust and Z was comfortable with. When I couldn’t be there or I fell asleep, Lili was there to read Z books and sing to her.

We were thankful Lili was with us the day Z passed. Z loved Lili as much as Lili loved her. Lili helped coordinate getting a handprint and footprint for Z and getting people together so I could safely hold her before she died.

Lili is a smart and kind nurse and patient/family advocate. She loved our baby.