by Rosa Walston Latimer
The word “faith” can have different meanings for different people. Faith can mean a belief not based on proof, a trust, or confidence. Certainly, a strong faith can provide hope when life is difficult. Faith can also provide assurance that no matter the situation, we will survive and perhaps even receive unexpected blessings. Very few lead a life of faith more thoroughly than Cole and Rhandyl Vinyard and their greatest blessing is their three-year-old daughter, Remington Faith.
“Remington was born eight weeks early,” Rhandyl said. “My pregnancy had been uneventful. Everything was normal and going as planned, but my water broke at 32 weeks, and I went into labor very quickly. An hour-and-a-half later, our daughter was born at University Medical Center in Lubbock (Texas).” The baby couldn’t breathe, and the NICU team that was present in the delivery room was able to intubate within seconds. “We are certain God’s hand was in this because had I been a week or so farther along in my pregnancy when I gave birth, the NICU team would not have been required to be there for the delivery. We know now that even if she was born full term, the outcomes would have been the same.” The newborn was taken immediately from delivery to NICU where she was intubated and on a ventilator.
Cole and Rhandyl did not know the gender of their baby before she was born. “We had a few names picked out for either a boy or a girl and decided we’d choose once we met the baby,” Rhandyl said. “I actually thought I was having a boy the whole time. To my surprise, it was a girl, and “Remington” was a no-brainer because since she was premature, we knew she would have to be tough.” Initially, the couple chose Rhandyl’s middle name, LoRae, for their daughter’s middle name, but responding to a feeling a few minutes later, Rhandyl asked her husband if it was too late to change the name. “When Cole said he hadn’t signed anything yet, I told him that Remington’s middle name must be Faith.”
“During our time in NICU we realized we needed to seek pulmonary specialty care for Remi, and we transferred to the Texas Children’s Hospital in Houston,” Rhandyl said. “At three months old, Remi had her first surgery – a tracheotomy and G-tube. She was in NICU at Texas Children’s for six months and then transferred to the Progressive Care Unit.” This extended stay in the hospital was necessary to allow time to adjust Remington’s ventilator settings and adapt to a home ventilator.
During the entire fourteen-and-a-half months – 444 days – that Remington was in Houston, Rhandyl lived in an apartment near the hospital. Cole was working a 12-hour shift schedule of six days on and eight days off. “He would drive to Houston for his days off and then drive back to Lubbock to work (approximately 1200 miles roundtrip),” Rhandyl said. “We lived at the Ronald McDonald House for the first month and then moved into an apartment in the medical district. The apartment was part of a local church ministry, and we could rent it on a per day basis so we could stay as long as we needed. The apartment was fully furnished with linens, an equipped kitchen – everything we needed – and allowed us to have a place that felt like home while we could not be in our home.”
The young couple is uniquely qualified to guide the care of their daughter. Cole, who is 37 years old, is a Registered Nurse at University Medical Center in Lubbock and is currently in the Family Nurse Practitioners Program at Lubbock Christian University. He is also a clinical instructor in the nursing program at South Plains College. Rhandyl, 31 years old, is a Physical Therapist Assistant although since Remington was born, she has been a stay-at-home mom and caregiver to her daughter. “Our occupational backgrounds helped us understand what was going on; however, as Cole said early on, this was a blessing and a curse,” Rhandyl said. “At times we understood too much.”
Bringing their daughter home brought mixed feelings of hope and concern. “When Remi was born, we had already set up a nursery for her in one of our spare bedrooms,” Rhandyl said. “As we prepared to bring her home, we realized there wouldn’t be enough space in the nursery for all of the equipment she would need. My brother and some friends helped Cole move the nursery into our master bedroom, and they even painted it in our original nursery color so as much as possible, it was Remi’s room.”
Rhandyl was very involved with Remi’s care during her time in the hospital. “I realized that once we were home, I would need to be able to do everything relating to her ongoing care as well as help teach home health nurses about Remi’s specific needs,” Rhandyl said. “It took me a little while to realize my responsibility as an advocate for my child. I learned to speak up to be sure nothing was done that we didn’t feel comfortable with. We know our child best, and we are the constant, unchanging influence in her care.”
“Remi qualifies for 24/7 nursing care, so there is almost always a nurse in the home with us; however, the first six months or so that we were home either Cole or I slept on a futon in Remi’s room,” Rhandyl said. “It took time to get home health staff in place and to feel comfortable with Remi’s care.” In addition to nurses, Monday through Friday Remi now has scheduled therapy at least once a day. “We have physical and occupational therapy, speech therapy, and nutritional therapy. She’s got the busiest schedule I’ve ever seen for a three-year-old!” the young mother said.
Remington’s condition, known as tracheobronchomalacia (TBM) causes her trachea to collapse when she breathes out. “Her tracheal rings are ‘u’ shaped rather than ‘c’ shaped,” Rhandyl explained. “From the beginning we were told that her trachea should improve with time. We were initially told a few months then up to 18 months, then 2 years.” The regularly scheduled bronchoscope that Remi had a little over a year ago indicated that she still had a 90% closure. This had not improved since her first scope when she was just over a month old. “We were again told that Remi’s airway may improve by age four.” Her parents were also told that Remi would probably need her trach and potentially her ventilator for her entire life. “We just could not accept waiting for another two years.” Rhandyl began searching for another answer online and through social media. She located Dr. Russell Jennings, a surgeon at Boston Children’s Hospital who performs the airway surgeries that Rhandyl believed would help Remi. “Dr. Jennings is one of three doctors in the United States who does this surgery, and he taught the other two,” Rhandyl said. “It took months for me to get referrals and send the required records by fax and email, but we got everything done and were accepted. Remi’s Posterior Tracheopexy surgery was scheduled for January 15, 2019 – on my birthday. We came home early in February, and in March Remi’s breathing began to improve. We recently began taking her off the ventilator, and since May, she has been off of the ventilator all day and only needs it when she is asleep. We hope that in a few years we can remove the trach. Remi will require other surgeries, but they will not be as rare as the surgery in Boston.”
Remington Faith may have taken over her parent’s master bedroom, and she may have a host of caregivers helping her to overcome her physical challenges, but at heart, she is a sassy, sweet three-year-old girl. “Although Remi is non-verbal, she can certainly let you know what she is thinking. Remi is developmentally behind physically, but she’s a typical toddler when it comes to her attitude,” Rhandyl said. “She loves to be outside, loves her toys, and enjoys Disney movies. We are all learning to sign, and Remi enjoys watching “Signing Time” on YouTube and DVDs. Beyond the equipment and the people who work with her, Remi is a little girl that enjoys things as much as any other child her age.”
Another definition of the word “faith” is “fidelity to one’s promise.” No doubt the promise and commitment Cole and Rhandyl made to each other when they married almost nine years ago is helping them through the challenges of caring for their daughter. “We had a good marriage before, but I feel this entire experience with Remi has made our marriage even stronger,” Rhandyl said. “We have mutual respect and know that we will each do what we need to do. We have the assurance that we can lean on each other. We are aware of the toll this experience could take on our relationship. Statistics show that a very high percentage of parents who experience a two to three-month NICU stay with a child end up divorcing. I give all the credit to God. Without Him, we could not make all of this work.”
Cole and Rhandyl also recognize how fortunate they are to have strong, consistent support from family and friends. “Our hometown community of Shamrock, Texas has put together countless fundraisers for our family. Shortly after Remi was born the town started a ‘red ribbon’ campaign hanging ribbons on homes and businesses all over town to show support and as a reminder to pray for Remi.” Rhandyl’s former co-workers and Cole’s co-workers have also sponsored various fundraisers to help the young family. “Most importantly, we are blessed with loyal Prayer Warriors!” Rhandyl said.
Remi is now walking with a gait trainer and using a stander. She is also taking all her nutrition by mouth. “Our lives are changed for the better because of our little miracle. Cole and I are encouraged as we see Remi accomplish new things. Looking back at the progress she has made in the past six months; I realize the possibilities are endless. We hope, and we haven’t been told otherwise, that Remi will catch up to children her age within the next few years. From a neurological standpoint, she’s doing well and that is a blessing,” Rhandyl said. “We try to focus on the next 24 hours. We don’t know what the future holds. It is all God’s plan, and we must have faith that everything is going to work out. All we have is right now.”
You can contact Rhandyl at rhandyllorae@gmail.com and follow the family’s ongoing story on their Team Remi Facebook page.