Jakob Morgan's parents already had plenty to worry about when he was born.
He was delivered in April by emergency Cesarean section, and his intestines were suspended outside of his tiny belly - a life-threatening condition known as gastroschisis.
Over the next three months, Jakob underwent three surgeries. He has only one-third of his intestines. His bones have been made brittle by the nutrition supplement he must take.
But those aren't the only things that have fueled his parents' anxiety.
For weeks, a huge worry was insurance - crucial to help pay for the hundreds of thousands of dollars' worth of treatment Jakob was receiving.
Though the Morgans were initially told that Jakob was approved for TennCare coverage in April, he wasn't enrolled for three more months.
"It's bad enough that you have to deal with a child in the NICU. You're worried to death about them," said Jakob's mother, Mindy Morgan.
"But having to deal with all the insurance problems while you're trying to deal with this - it's a nightmare."
The Morgans are among hundreds of Tennessee families that have struggled to access Medicaid coverage since Jan. 1.
A federal law requires the state to create a system for hospitals to temporarily sign up pregnant women, newborns and seriously ill patients for TennCare as a way to prevent gaps in coverage.
TennCare's failure to comply with that law, known as presumptive eligibility, was among a series of criticisms federal officials leveled in a June 27 letter demanding remedies to problems with the application process.
And it has been a chief complaint of advocacy groups.
"We are still getting calls every day from hospitals where very, very sick babies cannot get coverage," said Michele Johnson, director of the Tennessee Justice Center, a Nashville-based legal advocacy group that has been working with hospitals across the state. "And it's because the state is simply refusing to follow the law."
TennCare officials acknowledge the presumptive eligibility process has been slow; they say they have chosen to focus on other priorities in complying with the Affordable Care Act.
State officials also say they are taking time to create a system that will not put taxpayers on the hook for coverage that may not be necessary.
In a response to the federal government, TennCare Director Darin Gordon said the agency has created several "workarounds" since May to allow babies to get coverage - like using HealthCare.gov to determine presumptive eligibility.
And a TennCare spokeswoman said Wednesday that many other states are in an "identical position." She said Tennessee is unique in that it waited to submit its approach "until we worked out how we could effectively make it work."
But Tricia Brooks, a senior fellow with the Center for Children and Families at the Georgetown University Health Policy Institute, said Tennessee has become an outlier in its failure to comply with the law.
She said Tennessee's implementation of "pretty much all" the Affordable Care Act requirements "is at the bottom in comparison with other states."
For years, states have used presumptive eligibility to allow hospitals to connect pregnant women, their babies, and babies eligible for the federal Children's Health Insurance Program to coverage.
Tennessee hospitals used to have state officials stationed onsite to help process applications. The coverage is meant to be temporary - families were encouraged to with applications for long-term coverage.
The Affordable Care Act required states to allow hospitals as of Jan. 1 to immediately enroll more patients who are likely eligible for TennCare.
But in Tennessee, the door did not open wider. Instead, advocates say, it shut.
On-site state workers were removed, and TennCare began directing mothers wanting Medicaid coverage to apply through Healthcare.gov, the federal marketplace established to help people shop for subsidized health plans. The state's own $35 million computer system to determine eligibility is not yet working and is far behind schedule.
Hospitals across the state are reporting that hundreds of babies have been unable to get coverage, the Tennessee Justice Center has said.
Since babies don't have Social Security numbers, it's impossible for their applications to be processed through the federal marketplace. And even when applications can be submitted, many become "lost" after being submitted through state or federal channels, hospital officials lament.
Mindy Morgan said she was told by a federal hotline that Jakob was approved for coverage the day after he was born - they just needed his Social Security number to make it official.
But when she tried to give that to state officials, she was bounced from state to federal hotlines. She was unable to get an answer on what to do to get her son covered. Representatives kept demanding new data, or told her she would need to start all over.
Her Erlanger caseworker finally contacted the Tennessee Justice Center with her case. Jakob's was among 18,000 cases that were resolved in June, when the state - pressured by the TJC and other groups - had a "workaround" approved that allowed moms on TennCare to have their babies covered for the year they were born.
"I was so relieved, but angry that it had to take so long," said Mindy Morgan. "On every single call, I told them what was wrong with him. They knew how serious it was."
For hundreds of other moms, such as those not covered by TennCare but who need the coverage for their babies, there is still no clear resolution, say attorneys with the Tennessee Justice Center.
TennCare has continued to blame communication breakdowns on the federal marketplace.
"The lack of functionality at the [marketplace] is the cause for this underlying problem, and we proposed two workarounds to accommodate the situation," TennCare spokeswoman Sarah Tanksley said.
But Brooks said the federal marketplace was "never intended" to handle the question of presumptive eligibility, and that it was up each state to handle its own Medicaid enrollment system.
On Monday the state submitted a series of proposals to federal officials regarding presumptive eligibility. The new process would still rely completely on Healthcare.gov, and stipulates that the state be allowed to stop presumptive eligibility coverage after 45 days, in case the federal government fails to communicate about an applicant's status.
That is to avoid "open-ended enrollment," Tanksley said.
Johnson said she is wary of the new proposal - that it is "presumptive eligibility light," and not what the Affordable Care Act intended.
But she said it's a step.
Contact staff writer Kate Harrison at firstname.lastname@example.org or 423-757-6673.