Despite 'Ups & Downs' Baby With New Heart Happy, Growing Stronger

WADING RIVER, NY — It's been two months since a baby girl in Wading River got a life-saving new heart just before Christmas — and despite some challenges, her grateful parents say their daughter is happy and continuing to amaze them with her progress.

Still, Ruby June Cotter's road hasn't been easy in the eight short months she's been alive.

"We’ve had our ups and downs. It hasn’t been the easiest adjusting to home life after living in the hospital so long," Ruby's father Brian Cotter told Patch. "Ruby takes a lot medications and still has some issues eating and drinking. We go to the hospital in the city twice a week and they are long days of multiple appointments."

Overall, though, he said Ruby is doing very well considering everything that she’s been through. "She’s very happy; she’s growing and getting stronger every day," he said.

Throughout their journey, the community has come together to help, Cotter said. Since Ruby came home from the hospital, Cotter said he and his wife Ashley have been overwhelmed by the support; a meal train was created and fundraisers organized.

"Today is 2/22!" Cotter wrote for Ruby on Facebook this week. "My new heart has been beating for two months. I am learning and growing every day thanks to all my doctors, nurses and of course my beautiful donor and his/her family. I wouldn't be here without any of you. I am celebrating today by hanging out with my mom and dad and eating some real food like avocados and bananas!"

Ruby still has a nasogastric, or NG, tube, and despite a test to see if she was ready to have the tube removed, she is still aspirating some liquid, her father said. "We will try again in six months," he wrote, for Ruby. "I love you all and can’t wait till it gets warmer outside and I can visit people and do more with my family."

His little girl, Cotter said, has long days, filled with appointments. On Monday, Ruby had her regular check up with the heart failure team. The day included blood work, an EKG, and an exam; she then had her speech and swallow barium test, then an occupational therapy appointment.

"We left the house at 5 a.m. and got home at 6 p.m. It was a long day for everyone. Eventually, if she keeps doing well we will travel to the city less," Cotter said.

Since news broke about Baby Ruby's plight, communities near and far have held her close in their hearts — and prayed for her recovery. A GoFund Me page, "Ruby June Cotter," organized by Angela Albergo Houlihan, has raised more than $113,000 so far.

The baby's heart transplant came just in time for Christmas."Today I am receiving an early Christmas present," a post from Ruby June Cotter said, on her father's Facebook page in December. "A heart has arrived for me. It will be a very long surgery and the results might be a little unpredictable but we are so thankful for this beautiful gift. The next part of my journey starts today. My family and I are thankful for all of your love and support. We love you. Please continue praying and sending love for the wonderful family who offered me this gift of life."

"The fight isn't over for Ruby"

But challenges still lie ahead.

"Unfortunately she's using the NG, or nasogastric, tube to eat. Open-heart surgery and being intubated twice in 10 days can be hard on the throat, and the nerves that help swallow," Cotter said.

He and his wife will be driving with Ruby to NewYork-Presbyterian Hospital two days a week for checkups for a while, Cotter said.

"The fight isn't over for Ruby. It will be a lifelong battle. Getting a heart wasn't a cure — but more like a trade. She will be on medication that suppresses her immune system her whole life. She is 70 percent more at risk for skin cancer," Cotter said. "She will have to wear a mask in public and we, as parents, will have to teach her how to avoid getting sick, and germs from people. And eventually, hopefully a long time from now, she will need another heart."

Despite the rough road, there have been many blessings, Cotter said.

"My wife and I had the privilege of being with Ruby every step of the way. Everyone contributed something to make our lives easier. We always knew people were thinking about us and praying for Ruby. We received so many gifts, donations, and care packages from family, close friends, old friends and complete strangers," he said.

Fundraisers were held by members of the 106th Rescue Wing, where Cotter works, NoFo DoCo, Town Country Market, the Shoreham-Wading River volleyball team and Moravian College; a blood drive was also organized. Others put up collections jars, made signs, artwork and stickers to help, he said.

"My wife and I always talk about how incredible people are. In our souls we are good. People come together and rally when someone is in need and it's beautiful. It's not just from our little Wading River town, either — people from all over the country are offering help. We truly love you all so much and could never thank you enough or repay you," Cotter said.