MANSFIELD -- When Tiffany Montgomery rocks her baby girl to sleep, she’s holding a million-dollar miracle in her arms.
Isabella, “Bella,” spent three-and-a-half months in the newborn intensive care unit at Akron Children’s Hospital last year after weighing just one pound, seven ounces, and measuring 12 inches long at her birth.
Her medical costs amounted to well over $1 million.
But if you were to ask her Mansfield parents, Tiffany and Dustin, they’d say she’s worth every penny — and so much more.
Tiffany and Dustin’s journey to parenthood began on a somber note, as Tiffany’s first pregnancy ended in a miscarriage at nine weeks.
“When the worst was confirmed, that I was going to lose the baby, our hearts were crushed,” Tiffany said. “We mourned the loss of our ‘little ladybug’ and cherished the pictures and videos we created while pregnant.”
The crushing blow left Tiffany feeling averse to the idea of becoming pregnant again.
“I didn’t want another after being so hurt over our first,” she said. “I didn’t want to talk about babies or go to friends’ showers.”
But her father intervened, sharing some words of wisdom.
“He said, ‘Tiffany, you can’t live in fear. You have to trust God’s plan for you.’”
It wasn’t long before she was pregnant again. She called her mother and sister, sobbing.
“They thought my cat had died,” she said.
She was overcome with joy, yet terrified at the same time. Morning sickness was a welcomed relief, strangely.
“I was happy to throw up because I thought it meant the hormones were strong,” she said.
At her 15-week appointment, they learned they were having a girl and named her, Isabella "Bella" Melody — the name Tiffany felt the Lord placed upon her heart five years prior.
Five weeks later during her anatomy scan, the doctor noticed Tiffany’s blood pressure was a little high. She was told to take baby aspirin as a precaution. One week passed and her blood pressure remained elevated.
“I realized I was ‘high risk’ when I began going every week,” she said. “He encouraged me to relax and that I ‘just needed extra attention.’”
Weeks later she began feeling “off.” On top of feeling exhausted, her vision was blurry and her blood pressure continued to rise.
At around 23 weeks of gestation, she resigned from her part-time job at Love INC. to focus on the pregnancy.
"My blood pressure was still raising, I was tired, and I began swelling when I walked short distances,” she said. “The doctor suggested moderate bedrest. I couldn’t do much without feeling awful, so I spent a lot of time on the couch on my left side (the left side can help with blood pressure).”
Two days after her baby shower, her blood pressure reached 170/100 mmHg (a normal level is considered less than 120/80 mmHg). She was referred to a maternal fetal medicine specialist and admitted into Akron Children’s Hospital at 26 weeks of gestation.
She was placed on magnesium sulfate to prevent seizures and to help prevent brain bleeds for Bella, who was measuring very small.
“The doctors explained I could deliver in 3 hours, 3 days, 3 weeks, or 3 months,” Tiffany said.
She was diagnosed with preeclampsia and IUGR (Intrauterine Growth Restriction).
“I was able to hold off the delivery for about a week,” she said. “My goal was 27 weeks since that would put Bella’s survival rate at 90 percent.”
Tiffany was prepped for delivery Feb. 28, 2018. Her body felt as though it were shutting down. Shortly after the contractions started, the maternal fetal medicine specialist explained that Tiffany’s platelets had dropped “life-threateningly low “ and that they needed to perform an emergency c-section.
“I asked the doctor if I would bleed out while in the operating room. He said, ‘We might hit a few bumps in the road,’” Tiffany recalled.
She could feel the tools on her skin. Before the anesthesia kicked in, she thought about how grateful she was to have her husband, mother and mother-in-law’s support in raising Bella if something were to happen.
“I really wasn’t sure if I would wake up,” she said. “In that moment, I was OK with that. I was happy I wouldn’t be in any more pain and was thankful for Dustin and what a great daddy he’d be to our daughter.”
She woke up to the sight of her baby girl, whom she described as the tiniest baby she’d ever seen.
Bella was transferred to the top tier NICU at Akron Children’s. Meanwhile, Tiffany stayed behind and was diagnosed with Stage Two HELLP Syndrome.
Bella was intubated and taken into the NICU’s “rainforest room,” which is humid in order to resuscitate and care for babies. She had IVs, lines in her umbilical cord, and a feeding tube. She had translucent skin, zero fat and was as red as a tomato.
“She opened her eyes when I said her name,” Tiffany said. “It was pretty scary and cool.”
Bella spent three-and-a-half months in the NICU at Akron Children’s.
Her mother was pleased to report that Bella, who turned one on March 1, is doing very well today. Despite being developmentally behind, she’s on track for her adjusted age, which is based on her due date. She has good vision and exceptional hearing. And her hemangioma (birthmark) has shrunk with medication.
“She's had a lot of ups and downs,” Tiffany said. “Right now she's doing great and gaining. She's in the 2-percent.”
Bella vomits at about 80 percent of her tube feeds, which makes it difficult for her to enjoy eating orally. They recently began feeding therapy and are using Help Me Grow.
“Having Isabella has affected our daily lives in such amazingly wonderful ways, but not without hard work,” Tiffany said.
In the beginning, Bella required round-the-clock care. She developed severe reflux and had a premature GI system meaning she couldn’t keep food down and vomited 12-plus times a day. After undergoing many tests to rule out anatomical issues or disorders, it was ultimately determined she’d grow out of it.
“It was very challenging since we were seeing her in pain so much and her vomiting was extreme. At times she would retch so hard she broke blood vessels in her eyes,” Tiffany said. “I made sure everyone knew CPR and didn’t sleep well those first many months.
“She would feed via her tube/pump every three hours and then vomit during or after. We would go upstairs with ice packs to keep us awake during her feeds, needing to hold her in an upright position for hours. She was marked ‘failure to thrive’ since she couldn't gain weight.”
The Montgomerys survived on delivered meals from their church, food from their family, lots of Starbucks gift cards, and prayer.
Because Bella is a micro preemie, they were advised to keep her at home as much as possible.
“Dustin and I didn’t leave the house together for a very, very long time and I didn’t drive alone with her in the car until she was nine months old,” Tiffany said.
And when they do go out they make sure to change their clothes and sanitize upon returning home to avoid spreading germs.
Bella was on Synagis injections every month from November to March to help build her immunity. The only sicknesses she endured were a small two-day cold and a five-day stomach bug.
Now that it’s May and the respiratory syncytial virus season is over, she’s able to go out in public.
“We are very excited to get back to church and spend time with friends,” Tiffany said. “It is looking like we will isolate and get Synagis injections again come November.”
Tiffany said it’s common for micro preemies, especially those like Bella who have undergone procedures and ongoing needs, to receive care that reaches $1 million.
“It’s really frustrating that you have to go through so much and then get hit with bills,” Tiffany said. “There are many wonderful programs that help families like ours, including institutionalized Medicaid. If a child has been in the hospital for over 30 days in Ohio, they can receive Medicaid for one year. This is also helpful because Isabella’s formula is $500-600 a month. There’s no way we could afford that on one income and with all of our medical bill minimums.
“Thankfully, with Medicaid, we qualified for WIC, and utilized it for three months. If we hadn’t had Medicaid, we wouldn’t have qualified based on our income. We were able to voluntarily leave the program because our formula is medically necessary and now covered by our insurance.”
She said they have a private insurance and haven’t had to rely on Medicaid as much since they hit their deductible/max out of pocket immediately for 2018.
“Our family’s total max out of pocket with Cigna is $14,000. My care was about $200,000 and Isabella’s is well over $1 million. Thankfully, with Cigna, we only owe $14,000 from last year,” Tiffany said.
They hope to pay off the remaining $14,000 with the help of Christian Healthcare Ministries.
“We have been members (of Christian Healthcare Ministries) for about five years and continued to be members because they help with maternity bills,” Tiffany said. “We had no idea how much we would benefit from keeping this program until we learned I was high risk.”
The couple’s Medicaid coverage was extended for another year, which Tiffany said is helpful because it acts as a secondary to Cigna. They’ve also reapplied for Bureau for Children with Medical Handicaps coverage, which helps cover diagnostic testing.
“In the meantime, we panicked because we thought our insurance would cover Bella's feeding tube supplies and formula,” Tiffany said. “They will ‘cover’ it, but only after hitting our deductible. We have to pay out of pocket until $3,500 and then they only cover 70 percent until we hit $7,500 every year.”
As they’ve grappled with financial stress, they’ve found relief and support from others.
“There was a point when money was tight and my dad began covering my monthly cellphone bill. That certainly took some humility,” Tiffany said.
“At Christmas a few family members/friends got us more gifts than usual and that was really cool. It was a way they helped us while loving on Bella.”
Before Bella’s birth, the Montgomerys sponsored two female orphans from India and Malawi on a monthly basis and gave to missionaries.
“We were very sad when we had to stop giving to those. I remember crying. When my mom found out, she began sponsoring one of the little girls in our honor. That has been really cool. We plan on picking it back up once things are better financially,” Tiffany said.
So far they’ve been able to pay their bills and have a small amount in savings in case of emergencies.
“The medical professionals deserve to be compensated well for what they do,” Tiffany said. “They saved our daughter’s life, and mine. How can you argue that you should ‘let the bills go to collections’ or ignore them?”
That being said, gift cards to places like Target, Amazon and Walmart are always helpful because they help with purchasing diapers and other baby necessities.
“We’ve been able to move money around and pay for Bella’s care because of generous gifts from friends like diapers, wipes, clothing, etc.,” Tiffany said.
She added, “I would honestly just encourage people to give to Ronald McDonald House, hug a nurse or consider giving to Akron Children's Hospital.”
Hope and healing
The trauma that NICU parents can experience can take a toll, causing mental anguish and stress.
“I knew right away that I was at risk since I have panic disorder, depression and general anxiety,” Tiffany said. “I was already seeing a psychiatrist for my mental health when I had Isabella. I sought out help in the high risk unit before delivery and upped my dosage for my anxiety medication that was approved for pregnancy.”
She said she hasn’t suffered from postpartum depression, but it remains difficult processing all that took place.
“The anniversary of when I was hospitalized was hard,” she said. "Mental health services are difficult to utilize since Bella has been home, but now that she’s older I’ve reached out and am starting therapy soon.
“As a mom to a baby with special needs, there isn’t much time during the day to see a therapist, but I have a lot of support and can ask my mom or mother-in-law to help. I’m sure needing to be isolated because of Bella’s health also adds to these stressors and trauma.”
After experiencing an emotional roll-coaster for over a year, Tiffany said she’s doing well all things considered.
“There are hard days. I get emotional when she won’t eat, but I keep working with her,” she said.
She praised her husband Dustin for his support.
"Dustin is the rock of our household. He certainly has admitted feeling very worn down and stressed, but he keeps going to bat for us,” she said. “He works really hard and has been able to support us and provide everything we need. On top of working full time, he cares a lot for Bella and helps with appointments and night feeds. He’s amazing.”
Tiffany said she’s learned to adjust her expectations and embrace hope.
“Even when there isn’t reason to hope, you should. There’s something so transforming about hope,” she said.
She’s also learned to be flexible, ask for help, and show herself grace.
“I allow myself to mourn what happened and be sad and angry that things aren’t perfect. That life isn’t easy. That there’s heartache,” she said.
“You can’t see a baby that isn’t even supposed to be out of the womb struggle to breathe and getting poked by needles and think this life is all there is. To me, it’s confirmed that life wasn’t meant to be this way and that there’s much more. It helps me long for heaven.”