IOWA CITY, Iowa — Maci Thier's first 15 days of life have been very different than her parents once imagined: inside the walls of a neo-natal intensive care unit, attached to machines and under constant observation.
Matt and Dani Thier first felt like something was wrong on Saturday July 10, just 29 weeks into Dani's pregnancy. Dani wasn't feeling the baby move as much as she was used to.
"It's our first baby, so we didn't know if this was a normal pregnancy thing," Matt said.
Dani, an X-ray technician at Sanford Worthington Medical Center, went up to the third floor of the hospital and asked for a check-up.
The monitor read a fetal heartbeat of 240-250 beats per minute, about double what's considered normal for a baby in utero. At first, medical personnel thought it was a glitch in the machine, but they tried two others and got the same reading. Finally, a doctor manually listened to baby Maci's heart, and sure enough, her heart rate was dangerously high.
Dani was airlifted to a NICU at Sanford in Sioux Falls, S.D., to see specialists. They wanted to try a medication first, given to Dani, then transferred through her body to little Maci, to try to lower the baby's heart rate. It could take anywhere from a couple of hours to a few days for Maci to be affected.
That was Saturday evening. On Monday morning July 12, medical providers detected a heartbeat of 80 beats per minute. They thought it was Dani's heartbeat coming through the monitor, but confirmed that the 80bpm was indeed Maci.
"Within a matter of minutes, they had an emergency C-section," Matt said.
There was no time for Dani to get an epidural. The doctor gave her local anesthesia, but the process and recovery were painful for the new mom. Her low oxygen levels were also a concern, so Dani was kept under observation.
At the same time, Maci was whisked away to the NICU, and had to be stabilized before her parents could hold her for the first time.
Dani and Matt had decided to wait until birth to find out the sex of their baby, but by the time she came into the world, Maci's sex was the least of their concerns. They named her Maci Jo as a nod to Dani, whose middle name is also Jo.
"She had more surprises for us than we thought we were going to have," Matt said of his daughter.
For example, Maci's heart stopped 12 times the day she was born. Medical staff kept reviving her, but what she really needed was access to a more advanced NICU in Iowa City, Iowa. While moving her was important, Maci wasn't stable enough to make the two-hour flight.
Then another surprise came.
Doctors couldn't figure out why, but Tuesday morning July 13, Maci had some respite from her heart troubles and was stable enough to be flown to Iowa City.
"It had to have been a miracle," Matt said.
Dani wasn't well enough to fly, so Matt made the journey with Maci, and Dani met them there. Within a couple hours of entering a NICU in Iowa City, Maci's heart rate was stabilized.
It was determined that Maci was experiencing SVT — supraventricular tachycardia, an abnormally fast heart beat. Normally, the heart will adapt on its own, a specialist told Matt and Dani, but Maci's case is more complex than that.
Maci's heart had been working hard through the SVT, and it got tired.
"It was like she just got done running a marathon," Matt explained.
The SVT caused cardiomyopathy, a condition in which the heart doesn't pump as much blood through the body as it should.
Cardiomyopathy, in turn, is inhibiting the function of Maci's other organs, namely her kidneys and her brain.
"We haven't got a whole lot of good news about the brain," Matt said.
Maci is on pain medication, which is known to reduce brain activity, so the new parents are hoping that's the primary cause of their baby's low brain activity. A brain MRI and EEG (electroencephalogram) next week will give them more information.
The family has been in Iowa City since July 13, waking up each day wondering how Maci is going to do. She still has SVT episodes, and her body is fighting to thrive. Their doctors told the Thiers that Maci is the sickest baby in the NICU.
"It's been really tough," Matt said. "There's a lot of ups and downs."
Both parents' families have also travelled to Iowa City, but only Dani and Matt are allowed in the room with Maci due to pandemic regulations.
"Nobody thought Maci was going to make it," Matt recalled, explaining that the baby's grandparents only got to meet her briefly when it looked like she wouldn't survive.
Although they can't hold baby Maci, family members have been a big help by doing laundry and bringing meals for the new parents. Others at home in Worthington have cared for the Thiers' dogs while they're away.
Employers have also been a big support. Matt is a mechanic at Smith Trucking. When he texted his supervisor before Dani's flight to Sioux Falls, the response he got was, "Don't worry about work." The company has given him the flexibility to take care of his family for as long as he needs to.
They've also received financial help, as medical bills mount. A sister-in-law started a GoFundMe for the Thiers, which had raised $13,595 as of Tuesday morning, July 27. Their moms are also coordinating a T-shirt fundraiser, and there will be a golf benefit on Aug. 7 in Fulda.
"We feel loved," Matt said. "We're really thankful for all the thoughts and prayers. We don't even know where to begin thanking people."
He says they can feel the prayers helping Maci.
"She's got a long road ahead of her," Matt said. "She's not out of the woods yet, but she's making progress every day."
The Thiers have been told they might be in the NICU until Thanksgiving, but they're hopeful to go home sooner if Maci keeps improving.