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SPECIAL REPORT: From the Heart: Baby Remi

“We had gone to find out about fertility treatments two days prior, so when we went to the doctor two days later I just about fainted off the table.”

Brittney Kolvek says she was stunned when she found out she was pregnant, but her journey was anything but normal.

She developed severe preeclampsia and her placenta started tearing at 14 weeks.

10 weeks later she was having an emergency c-section and on December 6th, 2017 Remington Sier was born.

He weighed one pound one ounce.

His first diaper was the length of a chapstick.

Kolvek said, “I just wanted him to be safe. Nothing that I ever saw forthcoming in my life ever.”

Brittney has severe polycystic ovary syndrome or PCOS.

It’s a hormonal disorder.

When she became pregnant doctors took precautions.

“I had lost one back in 2010. I had a miscarriage….they’ve told me now that I shouldn’t have any more kids. So having Remi was like this is it. He has to be ok because I have to be a mom. It was a really big deal for me. It was very terrifying.”

Remi was a micro preemie and was born with chronic lung disease so his lungs were underdeveloped.

He went to the NICU right away…it was days before Brittney was able to hold her son.

Remi wasn’t able to get enough air to his lungs so he didn’t cry until he was two months old.

Kolvek described that moment as amazing.

“I actually get goosebumps talking about it cause waiting 8 weeks to actually hear him cry…that was such a definitive moment…and as a mom, that’s the best thing you can hear.”

A hospital room was what Remi grew to know.

He was surrounded by machines and hooked up to wires.

He had a gastrostomy tube or feeding tube.

Remi was doing better over time and was released from the hospital in June.

He was back there less than 12 hours later.

Doctors think his anxiety was too high.

“He developed pulmonary hypertension because of the chronic lung disease which can make it harder for you to breathe. It’s like suffocating from the inside out,” said Kolvek.

Remi returned to the only life he knew inside the walls of OSF Children’s Hospital of Illinois.

His health wasn’t improving and soon he was deeply sedated.

“Helplessness is the perfect word to describe it. There’s nothing you can do to help your child. I would literally sit on the couch every night and jump on the internet for hours and hours just looking for anything…any kind of answer.”

Remi has overcome death five times.

When he was born doctors gave him a 60% chance to live.

There was a time he was at 5% and then 1%.

“Each time was a rollercoaster and I wouldn’t lie if I said I feel like I might have a little PTSD.”

Brittney had created a Facebook group to keep family and friends updated on Remi.

She has social media to thank because that page connected her to a woman roughly 2,000 miles away.

Her name’s Tara Stone.

Her son Ashton has BPD or bronchopulmonary dysplasia, a form of chronic lung disease.

They live in Oregon.

Doctors there told her they had no choice but to unplug the ventilator, so she flew him across the country to Nationwide Children’s Hospital in Ohio to save his life.

When Tara saw what Remi was going through she says she couldn’t keep quiet.

“Oh my gosh if the moms didn’t reach out to me, I would be visiting my son in a grave. If I didn’t say something what would the outcome of that be?” said Stone.

At this point Remi’s doctors had tried everything, so when Tara told Brittney Remi’s vent settings weren’t accurate for a micro preemie Brittney spread the word right away.

Kolvek added, “As soon as she gave me that inkling of hope I ran to the doctors’ station right away.

Critical ventilator settings are smaller breathes at a higher rate, but doctors to the east were suggesting the opposite.

“This is not what we typically do, but I’m going to talk to other doctors look at the literature and see if this might work for Remi,” said Doctor Sandeep Tripathi, Attending Physician in the Pediatric ICU at OSF Children’s Hospital of Illinois.

While there were some tense moments, a change was just what the little man needed.

Remi’s blood pressure spiked a little but soon he started flourishing.

Kolvek said, “We were able to wake him up and that was truly the coolest feeling I’ve ever had in my life to think one minute we’re funeral planning and the next minute here I am waking up my son and seeing his smiling face and knowing he was going to be ok. It was just amazing.”

Brittney wrote on Facebook that she wasn’t going to do any more interviews, so I asked her why she decided to meet with me.

“If we can get the word out I know there are 10-15 thousand micro preemies born in America every year. If these parents knew about these Ohio protocols maybe it would help save their life to. If it hadn’t been for that Remi wouldn’t be here now.”

So how’s Remi doing?

He’s going through physical and occupational therapy daily and can now hold his head up.

“It’s the little things that other parents don’t think about. In here these are huge milestones for these kids.”

Brittney and dad Justin are now in the training process and she can get him out of his crib by herself.

“He’s the happiest baby. He’s always smiling always energetic never cries. My mom was saying it’s the sick children that are always the most positive and happiest because they don’t know any different. They don’t know this outside world. It’s like they’re humbled.”

It seems pretty fitting that Remi is referred to as the boy who lived and a lion as he’s been a fighter his whole life.

“I have nothing but the best hope that Remi is going to be somebody important…he already is somebody important.”

Remi is still in Pediatric Intermediate Care.

He doesn’t have a discharge date yet, but Brittney hopes it’ll be within the next few months.

If you would like to follow his journey search Love for Remi on Facebook.

Jessica Cook

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