TERRE HAUTE, Ind. (WTWO/WAWV) — Three-year-old Eleanor Tonika is a joyous little girl, one who warms up to people quickly and loves to sing songs while playing on her toy guitar.
But Eleanor’s journey to the child she is now was anything but easy.
It all started a little less than halfway through Kelcey Farr-Tonika’s pregnancy with Eleanor.
“At about 18 weeks we were seen by a doctor here in Terre Haute, our OBGYN, and they questioned kind of how far along she was when we were doing growth scans for her,” Kelcey explained.
Kelcey said test results continued to come back normal, but doctors in both Terre Haute and Indianapolis were not convinced.
“They kind of told us that she was almost like a ticking time bomb,” Kelcey said. “That she was okay now, but the next time we came back, you know, she may not be okay.”
Kelcey was put on bedrest for six weeks and a diagnosis of intrauterine growth restriction, which suggested that the baby was simply growing at slower rate.
Then, Kelcey was diagnosed with preeclampsia and HELLP syndrome, both dangerous conditions that affect blood pressure and can be deadly for pregnant women.
“If I didn’t basically get her out, it was going to be a life or death situation for me,” Kelcey said.
Eleanor was born via an emergency C-section and immediately placed in the neonatal intensive care unit, or NICU, where she was fed through a tube multiple times a day for over a month.
“After 33 days, she was able to finally start eating on her own and she had surpassed four pounds, which was a big deal for us,” Kelcey said. “Every little gain for her was a big deal, even if it was just a few ounces daily, but she was able to come home just after four pounds.”
Eleanor’s journey from delivery to discharge in the NICU is not as rare as families would hope, and it’s not only challenging for those families, but for the staff working to help the tiny babies develop.
“Long days caring for this baby, explaining things to Mom and Dad, helping them learn their baby’s cues,” Union Health NICU Nursing Care Manager Jennifer Harrah said.
Union Hospital, where Eleanor was born, operates a Level 3 NICU, which is the highest level of care within an 80-mile radius, according to Harrah. Union’s NICU, which opened in January 1968, was also the first NICU in Indiana.
Harrah said the need is there for the type of multidisciplinary system of care that Union’s NICU operates under.
“One in 10 babies are born premature in the U.S.,” Harrah said. “So having a specialty unit here that can care for those babies is important. We want to keep moms and dads and babies together, so if we can keep them in the community they can be more involved. It’s less of a burden for them that they’re close to home and they can come and be with their baby while their baby is in the hospital.”
Harrah said Union Hospital is staffed with a neonatologist 24/7 and NICU nurses earn specialty designation certificates to be able to care for the tiny babies.
Kelcey’s appreciation for the NICU staff that helped Eleanor is immense.
“I still talk to the NICU nurses that I had,” Kelcey said. “They get me into trouble because they send me all the links to cute, adorable girl clothing and stuff like that.”
In the time since Eleanor has come home and grown, Kelcey has become more involved with spreading awareness about the NICU.
She brought a chapter of the national nonprofit Project Sweet Peas, which helps provide support and needed items to families in the NICU, to Terre Haute.
“I started with Project Sweet Pea and I just wanted to be what they call like a Sweet Pea Advocate, which takes deliveries to Union or your local NICU,” Kelcey explained. “But I ended up, they had a Director of Volunteer Outreach Services position open up, so now I’m a director with it.”
Kelcey said there are many reasons why it’s important to spread awareness about the NICU, mainly that it can help make a difference for babies like Eleanor.
“There are so many babies that are lost,” Kelcey said. “I think by getting the word out there in education and research opportunities, we can save even more lives that are already saved each year.”
Kelcey recently helped secure a NICU Awareness Day proclamation from Terre Haute Mayor Duke Bennett and is working to get other cities to follow suit.
She said anyone interested in helping Project Sweet Peas can visit the website and look into volunteering.
Additionally, Kelcey asks that people change their outdoor lights to green for NICU Awareness Month in September.