NICU Mentors

Meet Our NICU In-person Mentors and Virtual Buddy Mentors

Amanda

NICU Buddy Mentor

My name is Amanda and I am a NICU parent too. My son, Ivan, was born at 24 weeks and weighed just 1 pound, 8 ounces. Ivan was cared for in the NICU for almost five months, learning to do the basics like eating and breathing on his own.

Through the many ups and downs, I found strength in hearing and reading the stories of other “micro preemies” and learning how to be an active parent to a child facing the medical challenges of being born too early. For 135 days, my husband and I balanced the reality of being NICU parents while maintaining a stable home for Ivan’s two older sisters and helping them bond with their new baby brother while he was in the hospital. It was a lot to juggle but we were able to do that because of the support that we received at GCH.

Although it feels like yesterday, Ivan left the NICU in 2017 and is now a thriving boy who loves t-ball and camping.

I know that this is a hard time, but you are not alone. There are resources available for NICU parents, caregivers, and siblings.

Clara

In-person NICU Mentor

When I was about 7 months pregnant with Jayla there were complications that led the doctors to believe that she would be still born. By the grace and mercy of God, Jayla was born 5 weeks premature. The doctors immediately worked hard to give her the care she needed.

When I was able to finally go and see her in the NICU she had so many tubes and machines hooked up to her. There were about so many doctors surrounding her like angels protecting her.  Everyday Jayla was getting better and stronger. Jayla stayed in the NICU for almost 2 months.

Jayla is 13 years old now and doing great! She was diagnosed with autism in the summer of 2015, but things could have been so much worse.

I am so blessed to have Jayla strong and healthy.

Jennifer

NICU Buddy Mentor

Jennifer’s daughter Grace was born in 2011 with what doctors already knew was a severe congenital diaphragmatic hernia (CDH). Grace had surgery at 24 hours old and went onto a heart-lung bypass machine called ECMO at 36 hours old. Despite some serious complications in the NICU, Grace surprised everyone and was able to go home after just 72 days.

Before Grace came home to meet her big sister, Jennifer and her husband needed to be trained on how to use and take care of Grace’s NG tube and pump (eventually a g-tube), oxygen tank, oximeter and the medications Grace needed around the clock. They were approved for a few hours of private duty nursing and eventually found nurses to fill a few hours each work day as Jennifer and her husband worked staggered shifts outside the home.

Grace eventually passed away at almost 17 months after complications during a surgery but her family is so proud of how far she came and is grateful for all she taught them including how to be the parents of a child with medical complexity.

John

NICU Buddy Mentor and In-person NICU Mentor

On June 25, 2017 I became a NICU dad. As I drove into the Strong parking garage early that morning, I could have never imagined what I was about to go though. Ivan was born 16 weeks early, and weighed only 1 pound, 8 ounces. He was a “micro preemie.”

Ivan had to spend 135 days in the NICU from June through November. Over that time, I had to face a new reality. This included being concerned with the health of Ivan along with balancing the needs of my spouse, job, and other children.

Navigating this new normal was challenging. But the staff at Golisano gave Ivan the best possible care and supported me and my family for the duration of his stay.

After 5 months Ivan was released from the NICU and is now a thriving 6 year old.

You are not alone, there are resources available for the NICU Dad, parents, and all caregivers.

Katrina

NICU Buddy Mentor and In-person NICU Mentor

I gave birth to my daughter, Rosalie, at 28 weeks due to complications during pregnancy. Rosie weighed 2 pounds 14 ounces and was a fighter from the start. She suffered Grade 3 and 4 brain bleeds shortly after birth, which added a complication called hydrocephalus. My husband and I learned as much as we could about what brain bleeds meant for Rosie and what actions would need to be taken by neurosurgery to help drain spinal fluid from her brain. She had brain surgery for a shunt to be placed at one month old. Afterward, Rosie worked hard to get bigger and learn to eat - she spent a total of 3 months in the NICU.

When she was finally able to go home, she needed a feeding tube to help her finish her feeds, but it didn’t last long and soon she was thriving. Rosie had multiple surgeries within her first year of life after being released due to hydrocephalus and has some continued mild physical limitations today. She is now a sweet and sassy 4 year old little girl who loves singing and dancing, copying her big sister, Lucy, and spending time with her extended family.

My husband and I both know firsthand how difficult it was having a baby in the NICU and juggling all of the other parts of our lives during such a tough time.  We are big advocates for the Golisano Children’s Hospital and continue to find ways to give back whenever we can throughout each year.

I choose to volunteer in the Parent to Parent program because I know what it felt like to feel happy and sad at the same time while my baby was in the NICU. I know what it’s like to have support in my life, yet still feel lonely, like very few people understand. I know what it’s like to fight fiercely for my baby, yet still feel scared. I know that when I meet another mom that has had a baby in the NICU for any amount of time, she will just “get it” when we share stories. I hope to provide some comfort to other moms going through a similar experience – having someone who understands is sometimes all you need to gain that extra ounce of strength you need.

Kiara

NICU Buddy Mentor

Kamden was born in October 2018 shortly after midnight, the night I turned 24 weeks, weighing only 1lb. He arrived very early due to severe complications of HELLP Syndrome, that made it medically unsafe for me to continue my pregnancy; the only treatment for me, was to deliver him.

Kamden quickly developed a reputation of being a NICU troublemaker, frequently putting up a fight and extubating himself. Throughout his time in the NICU Kamden would battle failure to thrive, bronchopulmonary dysplasia (BPD), Intermittent exotropia, retinopathy, feeding difficulty, that was compounded with a tongue tie, reflux, an acute kidney injury and a variety of infections throughout his 8-month NICU journey. 

Though 5 years have passed, and Kamden has done a lot of growing, he still struggles with the effects of his BPD, and has since been diagnosed with asthma, as well as feeding difficulties, slow weight gain, and global developmental delays with hyperkinesis. We continue to work with our GCH providers in Pulmonology, Ophthalmology, Developmental and Behavioral Pediatrics, Gastroenterology, Hepatology and Nutrition, Nephrology and Sleep Medicine.

Kamden loves music and playing with his brother. He is a happy 5-year-old, navigating the complex world of kindergarten, as a kiddo with some special needs. I am excited to serve on our GCH's Family Connection Program as a mom who has had to unexpectedly navigate a NICU journey and look forward to helping other families along theirs.

Macayla

NICU Buddy Mentor

Hello my name is Macayla and my NICU miracle baby is Mariah. Mariah was born at 27 weeks weighing 2 pounds and 3 ounces and she was the biggest surprise and blessing. We spent most of our time in the Pink Hallway in Room 44. Some days were great and some days were gloomy, but all in all we made in through. We spent about three months total in the NICU. As a former NICU parent I can relate and understand the turmoil of emotions, and the thoughts of “What-If’s” that came with it. Skin to skin contact was an experience I looked forward to every day after finding out I was having a girl. I would picture my daughter coming out and her being handed to me immediately and having that mommy and daughter moment. But once I didn’t have that experience immediately, and my birthing plans took an unexpected turn, I was sad and disconnected. I waited a week and a half before I could have skin to skin contact with my baby. Joining the PAIRED Program is my way of connecting with other NICU parents by sharing my experience and providing a sense of support on their unexpected journey.

Nichole

NICU Buddy Mentor and In-person NICU Mentor

Meredith was born on October 21, 2012 at 27 weeks, 3 days. She weighed 1lb 9oz and was 12.5" long and had IUGR (intrauterine growth restriction). During her 84 days in the NICU she received three blood transfusions. She was intubated for 3.5 weeks, on CPAP for a short period and that was switched to the regular cannula for quite awhile. She also suffered a collapsed lung during the beginning weeks of her stay. She was considered a slow gainer and needed to have a supplement added to breast milk for quite awhile. She failed her seven day countdown three times before she was finally able to come home. She spent several days in isolation after Christmas due to fear that she had RSV. Thankfully it was just a bad cold. She did not come home on any oxygen, feeding tube or monitors, but we did have to add the supplement to my breast milk to increase her calorie intake to help her keep gaining weight. She was also diagnosed with severe reflux. She came home on meds and had to have the head of her bed propped up to help with this.

Meredith started Early Intervention (EI) a month after she came home. She received physical therapy and feeding therapy with a speech therapist. She needed PT due to her right side being weaker than the left and feeding therapy due to choking issues while bottle feeding. She received PT until she turned three and she no longer qualified for services. Meredith had therapy for feeding issues and then as she began to talk it changed to actual speech therapy. She received speech therapy until two months before she turned three. She no longer qualified for speech services at that point.

She is a happy, healthy 9 year old and in 4th grade as of December 2021. She still has some slight gross motor delays, but not enough to qualify her for PT services.

 

Tricia

NICU Buddy Program Coordinator and In-person NICU Mentor Coordinator

Tricia is a mom of two. In 2004, her water broke at 23 1/2 weeks and she was admitted to Strong Memorial Hospital where she would stay until her daughter Jamie was born at 25 1/2 weeks (considered barely viable at the time). Jamie was 1 pound 7 ounces at birth and spent 87 days in the NICU at Golisano Children's Hospital. Jamie came home two weeks before her due date to join big brother Nikolas. At discharge Jamie was just 3 pounds 10 ounces but doing everything she was supposed to.

Tricia says there is nothing like having support from a person who has been on a NICU journey. This has shaped the many ways she gives back to our hospital. She has been on the Family Advisory Council since 2006. She says her proudest achievement is starting and developing the mentor program in our NICU in 2010. That involves Tricia and other former NICU parents reaching out to families currently in the NICU, sitting by the bedside, providing emotional support and sharing in their struggles. Tricia also organizes and trains parents in the NICU Family Support program that hosts Family Nights each month in the NICU. Tricia is also a part of developing the virtual NICU Buddy Program that was started in 2021. For her efforts Tricia was awarded the 2014 Miracle Maker Award for Outstanding Commitment by a Grateful Parent and the 2016 Louise Criticos Volunteer Recognition Award from Friends of Strong.

Thanks to donor funding, a part time NICU Family Advisor position was created in 2023. Tricia was hired into that position where she furthers the programs mentioned above.