"The hospital and staff have been nothing short of amazing with being there for her and me."
Amy was preparing to welcome her first child into the world when she tested positive for COVID-19 and was having difficulty breathing. She noticed she wasn't feeling her usually very active baby girl kicking or moving, so she reached out to her doctor, who advised her to go to her local emergency room. There, it was discovered she had undiagnosed preeclampsia. Amy was transferred to Robert Wood Johnson University Hospital in New Brunswick, New Jersey. She was only 29 weeks pregnant, so the doctors were working to delay labor as long as possible to give the baby more time to develop without compromising Amy's health. Unfortunately, after a few days of being in the hospital, the baby needed to be delivered.
On January 1, 2024, Penelope was born and instantly brought to the Neonatal Intensive Care Unit (NICU) of the Bristol-Myers Squibb Children's Hospital, where she spent her first five and a half months due to several issues with prematurity, including necrotizing enterocolitis, which is a condition that affects the intestines, and a grade 4 Intraventricular Brain Hemorrhage. During this time, she had three abdominal surgeries, two brain surgeries, and a ventricular aorta shunt and gastrostomy tube (G-Tube) put in.
"Penelope was battling the preeclampsia before I even realized I had it. Something inside of me was telling me to go to the hospital when I couldn't breathe. I'm so glad I did because who knows where we would have been," noted Amy.
Inpatient Rehabilitation at Children's Specialized Hospital
After Penelope was stable enough to be discharged from the NICU, she was transferred to Children's Specialized Hospital's (CSH) Infant and Toddler Rehabilitation Program in New Brunswick. She struggled with regressions and delays when it came to speech, and she wasn't sucking on her pacifier properly. Penelope also had torticollis and stiffness in her neck. "She needed therapies, so we opted for Children's Specialized Hospital. We wanted to give her every opportunity to get all the therapy she needed in inpatient," added Amy.
During her time in inpatient, Penelope received 24-hour medical and nursing care, plus intensive speech, occupational, and physical therapy. The Infant and Toddler Rehabilitation Program also includes aquatic therapy, which Penelope grew to adore. "She loved sitting in the pool and letting the water flow over her," stated Amy.
In occupational therapy, Penelope worked closely with occupational therapist Olivia Pearce, who worked on vision and acceptance of activities of daily living such as baths, diaper changes, and getting dressed. "When I first met Penelope, she was very irritable and did not like when people changed her diaper, bathed her, or got her dressed, nor did she really look at any items. I used a lot of high contrast toys like a black, red, and white mirror, shiny red objects like tinsel, and Mardi Gras beads, and illuminated these objects with a flashlight or used a light box for her to start seeing," stated Olivia.
Penelope also needed assistance with loosening up her muscles and oral stimulation. Speech and language therapy focused on oral stimulation as Penelope's swallowing was delayed, while physical therapy worked on muscle stiffness.
"When Penelope first arrived, she was very sleepy and liked to be tucked into a nice little ball," stated physical therapist Amber Props. At the start of her physical therapy sessions, she worked on improving her arousal and stretching out her neck and limbs to move her body more freely. "Once Penelope began to wake up more, we worked on holding her head in the middle to play with toys when on her back, tolerance to tummy time on elevated surfaces to work on head control skills, and participating in rolling," added Amber.
After about two months in inpatient rehabilitation, Penelope was ready to head home. She was able to visually track the objects in occupational therapy, look at her therapist and/or her parents' faces, and start to "coo." Penelope also went from disliking her baths to baths becoming her favorite activity, making her very calm and attentive. "She's even grabbing for toys and smiling when she recognizes things," highlighted Amy. “She's come a long way!"
"I am so proud of her progress, and it was an honor to work with her in occupational therapy," exclaimed Olivia.
"Penelope was able to make good progress towards our goals for her. She has a wonderful family to support her as she develops and continues to progress her skills," noted Amber.
Amy reflected on her time as a parent at Children's Specialized Hospital, noting how important it was to get involved in your child's care and attend parent/caregiver events at the hospital. "There was a scrapbooking night hosted by Family Faculty members, and I thought it was so nice. I made a beautiful scrapbook for my baby, and I was able to meet other moms and families going through something similar."
Outpatient Therapy at CSH Toms River
To continue to make strides in the right direction, Penelope started outpatient therapy at Children's Specialized Hospital in Toms River, New Jersey. Here, she's been working on occupational therapy. Additionally, she just completed her evaluation for physical therapy and will begin weekly sessions.
In occupational therapy, Penelope is working on strength and endurance to sustain developmental positions with occupational therapist Danielle McConnell. She is also working on visually regarding and tracking toys and opening her hands independently in preparation for holding toys. "She is making nice progress in head control and tolerance to tummy time. Penelope is such a hard worker and is making progress each time I see her," highlighted Danielle.
"We're taking it one day at a time, but Penelope has been giving 150% at all her appointments. She's been doing so good so far. She's hitting milestones and heading in the right direction," cheerfully stated Amy.
Defying the Odds
“In her short life so far, Penelope has shown she can overcome obstacles. She has defied every odd thrown at her so far. Everything has been an obstacle stacked against her, but she has proven that she wants it bad enough," noted Amy. "My greatest hope for Penelope is that she will have every opportunity everyone else has. She will be able to grow and live an easygoing life. I want her to be a carefree child who can run around and play and do everything the other kids do. I hope she has a healthy and long life."
"As her mom, it's been a roller coaster, especially since this is my first child. I like to describe myself as always being on autopilot because I put her needs and wants first, and I deal with my feelings later in private. The hospital and staff have been nothing short of amazing with being there for her and me. They've been so welcoming, kind, and resourceful and always included me in Penelope's plan of care. Children's Specialized Hospital creates miracles."
For other parents and caregivers going through a similar experience, Amy advises you to keep holding on and fighting for your child because it will get better. She encourages you to utilize all the resources offered to you, ask questions, and be involved in your child's care. "You don't know your strength until you are put to the test, and you need to be strong and keep fighting for your child."
Learn more about Children’s Specialized Hospital’s Infant and Toddler Rehabilitation Program.