At nearly 3 months old, Lorelai Hockaday is beginning to make her opinions known.
The Casper baby likes being held and has recently taken a liking to her MamaRoo swing. She's starting to smile, lift her head and carefully watch the people moving around her hospital room.
She has absolutely no patience for the tubes and equipment that have surrounded her nearly her entire life.
"She will tell you exactly what she thinks," her mom, Taylor Hockaday, told Cowboy State Daily.
Those little pieces of personality have emerged inside hospital rooms as Lorelai has traveled from Wyoming to Colorado and, eventually, Missouri.
Now she and her mom are in St. Louis, more than 800 miles from home, waiting for the phone call that could finally give Lorelai a chance to leave the hospital.
She needs a lung transplant.
Casper To Denver
Nothing during Hockaday's pregnancy suggested this was coming.
Scans were normal. Routine genetic screening didn't reveal anything unusual.
Lorelai was the family's third baby, and Hockaday expected another relatively normal birth.
Then she went into labor early. Lorelai was born June 20 in Casper at 34 weeks and six days.
Being premature meant doctors were already watching closely for breathing problems.
Immediately after Lorelai was born, she didn't take the big breath and let out the powerful newborn cry her mother expected.
"I got to see her for a second," Hockaday said, then doctors took Lorelai away to help her breathe.
She was quickly placed on CPAP.
Doctors also noticed something unusual when they measured the oxygen in her blood. The saturation measured on her right hand was substantially higher than measurements taken from her other extremities.
At times later in her treatment, Hockaday said, the difference became extreme — a reading in the mid-90% range before blood passed through Lorelai's lungs could fall to around 65% afterward.
Doctors identified pulmonary hypertension, meaning abnormally high pressure in the blood vessels of the lungs.
Initially, there was hope that Lorelai's lungs simply needed more time to adjust to life outside the womb.
They didn't.
She was transferred from Casper to Denver and later to another hospital in Aurora as doctors tried to figure out why.
'Extraordinarily Rare'
The answer was alveolar capillary dysplasia, or ACD, a rare developmental lung disorder.
In Lorelai's case, Hockaday said doctors found a mutation involving the FOXF1 gene.
Hockaday said doctors told the family that Lorelai's particular mutation had never previously been reported.
"They really didn't know what to expect with her," she said.
ACD interferes with the tiny structures in the lungs that allow oxygen to pass into the blood. Lorelai hasn't undergone the lung biopsy sometimes used to diagnose the disorder because doctors considered the procedure unnecessarily invasive given her symptoms and genetic results, Hockaday said.
What doctors could tell the family was grim.
Hockaday said the disorder is extraordinarily rare, and many babies diagnosed with it survive only days or weeks.
Lorelai will be 3 months old Sunday.
"We're very lucky," Hockaday said. "A lot of kids only live either a few days or a week. I mean, to be almost three months is pretty rare."
Even more remarkably, Lorelai has remained relatively stable.
She was once intubated, then progressed to CPAP and now breathes with high-flow oxygen through a nasal cannula.
She's currently receiving 12 liters of high-flow oxygen, Hockaday said.
The pulmonary hypertension has also put enormous stress on Lorelai's heart.
At one point, Hockaday said, doctors described her heart function as severely diminished because of the pressure backing up from her lungs.
Kangaroo Care
For Hockaday, motherhood has become a great balancing act.
She can't breastfeed or bottle-feed Lorelai because doctors don't want to risk aspiration while she's receiving so much respiratory support.
Instead, Hockaday pumps breast milk and Lorelai receives it through an NG tube.
She can hold her, and Lorelai loves that.
Hockaday changes her diapers, washes her face and helps nurses with her daily care.
All four hospitals the family has navigated since June have encouraged skin-to-skin contact and what Hockaday described as "kangaroo care."
When one of Lorelai's familiar nurses is there, Hockaday occasionally allows herself to step away.
Hockaday has slept in the hospital with Lorelai since they arrived in St. Louis on Aug. 6.
Before that, she and her husband, Nick Hockaday, traded time at the hospital.
"It's just really weird leaving our girl," she said.
Meanwhile, they have two other children who also need their parents.
That's one of the hardest parts.
If the other children get sick, Hockaday worries about being around them and then bringing an illness back to their medically fragile sister.
So an already divided family has to divide itself even more.
Waiting For A Lung
Without some yet-unknown medical breakthrough, Hockaday said doctors have told them a lung transplant is Lorelai's path out of the hospital.
"If there was some sort of magic medicine, that would be great," she said. "But as of right now, there really isn't."
That realization eventually took the family to St. Louis and a pediatric transplant center.
Lorelai has completed her transplant evaluation and is now on the waiting list.
"Once you're on the list, your phone is on you 24/7," she said.
She keeps the sound turned on as much as possible — even in the hospital.
The call could come at any moment.
If it does, the transplant team will begin preparing Lorelai while another team evaluates and retrieves the donor lungs.
Even then, nothing is guaranteed.
Sometimes a family gets the call only for doctors to discover that the organs aren't suitable after all.
Hockaday has already learned the transplant-world term for that heartbreak: A "dry run."
The team could mobilize. Lorelai could be prepared. Everyone could believe this is finally it.
Then the lungs might not come.
'A Selfless Act'
There's another reality Hockaday can't escape.
Lorelai is tiny, so her donor has to be tiny, too.
That means the lungs her family is desperately waiting for will likely come from "a two- or three-month-old kid," Hockaday said.
It's difficult to reconcile.
The day Taylor and Nick Hockaday receive the phone call they've been waiting for could be one of the greatest days of hope their family has experienced since June.
For another family, it could come amid unimaginable grief.
"It's definitely rough," Hockaday said, pausing to collect herself.
She thinks about the family on the other side of that gift.
"It's a very selfless act," she said. "I would want to do that for someone."
Overwhelming Support
There's no way to know how long Lorelai will wait.
The family was told it could take as long as nine months to find suitable lungs.
Even after a successful transplant, they won't simply pack up and drive home to Casper.
Hockaday said the family has been told to expect to remain near the transplant center for at least three months afterward, followed by appointments every three months during the first year.
For now, family members are using accommodations through Ronald McDonald House while trying to figure out how to maintain their home in Casper and a temporary life in St. Louis.
Nick Hockaday missed about six weeks of work during Lorelai's medical journey, his wife said.
"We really haven't been, like, people to ask for help unless we really, really need it," Hockaday said. "And this is one of the situations where we really, really need it."
Friends and supporters have created a GoFundMe to help the family cover housing, travel and other expenses while Lorelai waits for a transplant.
Hockaday said the support from people back in Wyoming and strangers who have learned about her daughter has been overwhelming.
"It's great to know that people are wanting to help, and I'm so very grateful for it," she said.
For now, she remains beside Lorelai in St. Louis, listening to those increasingly quiet breaths and keeping her phone close, waiting for it to ring.
Kolby Fedore can be reached at kolby@cowboystatedaily.com.
