MILESBURG When Blake and Chrissy Burns learned they were expecting, they were “too excited.”
“I got a crib already and a changing table,” Blake said. “We started rearranging her room and everything.”
Today three pink walls complement a fourth covered in a whimsical tree mural in purple hues between two bright windows. A big bow and a mobile hang from the dark wooden crib. Butterfly decals circle the room down to a bright yellow dresser.
But the words on the wall above the crib tell the story that the family of three has lived this past year: “Ella, a big miracle in such a little girl.”
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Ella came into the world earlier than expected. She was born in December — four months before her April 2 due date. While she’s already overcome many obstacles in her nine months, there are many more that await her.
After an engagement almost two years ago, the Burnses had originally set their sights on a December 2012 wedding, but plans changed as the preparations mounted.
“We decided spur of the moment in April last year that we wanted to have a spring wedding and just have immediate and a few friends,” Blake said.
The couple were married May 12, 2012, but decided to still keep their Christmas-themed reception on the December date.
“We still wanted to celebrate with everybody, but we just wanted the wedding to be close and personal,” he said.
Blake and Chrissy enjoyed their first few months as a married couple, but soon started to wonder if their family would expand when “August came around and Chris started not feeling well,” Blake said.
One morning, excited about the potential of becoming a father, Blake left a pregnancy test sitting in the bathroom for Chrissy before he left for work.
“That way when she got up for work, she would see it and take it,” he said.
Wanting to tell her husband the good news in person, Chrissy stalled him most of the day.
“I was very shocked. I tried to keep it together,” Chrissy said. But eventually, she sent him a picture of the results. “I felt bad, and I couldn’t keep it in anymore,” she said.
“We were very excited and of course we were like any other couple would be, you know, like ‘oh no, now what,’ ” Blake said.
Ups and downs
At a 20-week check-up last November, the proud parents-to-be were looking forward to learning if they were having a boy or a girl, but they learned much more.
“The doctor came in and said (Chrissy’s) cervix had already been thinned down to 1 centimeter,” Blake said. “Of course we had no idea what that meant.”
Seeing this would be a high-risk pregnancy, the doctor connected the family with physicians at Geisinger Medical Center in Danville and put Chrissy on progesterone hormone medication and bed rest.
The news was difficult for Chrissy, she said, because she is “outgoing and likes to do things.”
“I almost got her a baby sitter,” Blake quipped.
But it was just another twist that the newlywed couple would take in stride. Bed rest meant Chrissy couldn’t work, and the couple worried about finances with a new baby on the way, but “we took it week by week,” Blake said.
He wasn’t expecting anything other than a Monopoly game for his Dec. 5 birthday, but that night Chrissy began feeling cramps and discovered she was bleeding.
A visit to the emergency room showed Ella was healthy, but Chrissy was in labor — resulting in a trip to the hospital in Danville, where Chrissy was given magnesium to stall the labor.
“We knew we had to try to stop it because she was way too early to come into this world and we knew we needed to keep her in a few more days to be sure that we could have a chance,” she said.
Blake followed, but only after stopping at home to pack a bag.
“I was trying to go around the house and what we already had for (Ella) I was trying to put in the room. That way, if we went there and came home without her, we didn’t have to see it,” he said. “We had already started painting her room and getting everything pink.”
The labor had subsided for two days, but around 5 a.m. on Dec. 8 — the date of the couple’s long-awaited wedding reception — Chrissy began feeling contractions again.
“It kind of went really fast, actually,” she said.
Both of the couple’s families rushed back to Danville.
“We were all crying,” Blake said. “The day prior to that we had met with the NICU doctors down there and they told us everything that could go wrong, what would go wrong, and the chances that she would have later in life — if she would make it.”
“The odds weren’t good,” Chrissy said.
But Ella was born at 2:33 p.m., and immediately handed off to the neonatal staff.
But first, Chrissy and Blake were asked if they wanted to see their daughter.
“We were scared. We were terrified what she was going to look like,” Chrissy said. “We knew she was extremely early, and we’d never seen a baby that early.”
Knowing the gravity of the situation, the couple knew there was a possibility that it could be the only chance to see their daughter.
“Of course, we said we had to,” Crissy said. “We’re her parents.”
The couple looked up as Ella threw her arm up “like a wave,” Blake said. “And she even gave us two little cries.”
“We were shocked because we didn’t think we would here anything.”
It took two hours before the new parents heard any news after Ella was whisked away by physicians.
“That was the scariest part — just waiting,” Chrissy said. “Did she make it? Did she not?”
Finally, they got to meet their 1 pound, 5.9 ounce daughter.
“She reminded me of a little cranberry,” Blake said. “She had all these wires and tubes where her belly button is.”
Because of her early developmental stage, Ella’s translucent skin peeled off when touched, so she was covered in plastic wrap to hold in warmth and moisture.
“We couldn’t do anything at that point,” Chrissy said. “Just look.”
One of those physicians who helped save Ella was Lauren Johnson, a neonatologist at the hospital.
At the time she was born, Ella hadn’t developed alveoli — the tiny balloon-like structures that human lungs use to exchange oxygen — so Ella’s course to survival “was initially about her lungs,” Johnson said.
After making it through the critical first 72 hours, Ella did “shockingly well for a baby at her gestational age,” Johnson said.
But soon the many challenges that awaited her began to surface.
At two weeks, the Burnses got a call in the middle of the night saying that Ella was lethargic and not herself, and once again, the family was told to prepare for the possibility of losing their daughter, who had E. coli bacterial meningitis.
The infection had spread throughout her entire body, including her brain, where permanent damage could occur.
“Once again, we were faced with ‘what is Ella going to be like when she gets older,’ ” Blake said.
Ella received antibiotics and lots of tests, and as Christmas neared, “miraculously she pulled through it, and the infection was gone,” Blake said.
An MRI has since shown “some degree of damage to the brain,” Johnson said. But “not nearly as bad as anyone could expect.”
After the infection subsided, Ella spent the next five months growing and overcoming hurdles.
She developed a severe lung disease because of the meningitis. At times, she had numerous IVs in her arms and her leg, some of which infiltrated and popped, Blake said, leaving a scar on her arm and calf. And her blood-transfusion count is close to 20.
Ella spent two months on a ventilator, and the force of her breathing devices and the length of time in which she had to use them on top of being born so early resulted in the need for eye surgery. She lost peripheral vision, but she can still see.
Johnson said she “tells parents it’s a roller coaster ride, but one that no one’s ever been on” because each child’s case is unique.
Blake and Chrissy persevered. Both parents stayed close to their daughter in Danville until Blake eventually returned to work in February as a certified nursing assistant in a medical oncology unit.
Chrissy stayed by her daughter’s side.
“We talk about the parents being the biggest determinant about how babies turn out,” Johnson said. “They just rode it out so well. ... They’re a fantastic couple.”
The experience wasn’t without unique joys.
When Ella was born, her eyes, like any baby at that stage, were still fused shut. When Blake and Chrissy were first able to hold Ella, they were able to see them open.
“(Chrissy) held her the first time, and she popped her eye open,” Blake said. “The second time I held her, and she popped her other eye open. So we actually got to watch her open her eyes for the first time and look around.”
“Basically you get to watch a baby that’s (supposed to be) inside you,” Chrissy said. “It’s amazing.”
Other memorable milestones for the couple are seeing Ella wear clothes for the first time and seeing her entire face once all the breathing apparatuses were no longer needed.
“For the first time we could see Ella’s face,” Blake said. “It was neat to see her entirety.”
As the next few months passed, Ella was still “status quo,” Blake said, and the Burnses were getting “anxious” to go home.
One of Ella’s last hurdles keeping her in the hospital was learning to eat.
“We fought tooth and nail with that bottle,” Blake said. Finally, Ella got to the point where she was taking every other bottle.
“We were almost impatient because we were ready. He room was ready. The house was ready. And that day finally came in May,” Blake said.
“We walked through the NICU and everyone said their goodbyes. It was kind of bittersweet,” he said. But “it was probably the best feeling in the world carrying her out to the car.”
The family made it home to Milesburg on May 4.
After spending months in the hospital, it was a new experience for the couple to have their baby to themselves.
“We just sat there and held her,” Blake said.
About a week later, Ella was back in the hospital, this time because of acid reflux.
“It’s amazing how fast it came on, and it came on strong,” Blake said. “She was doing so well, and then all the sudden. ... It shows just how fast things can change.”
Ella had one more surgery, a fundoplication, in which the sides of the stomach are wrapped around the esophagus. The muscles of the stomach work as a valve to keep everything in place.
The family spent another week and a half in the hospital before making it home permanently.
But, “she’s done just fabulous since then,” Johnson said.
A life with Ella
As for why Ella was born early, no one knows for sure.
“This is one of those cases where you look at it and you never know why,” Johnson said, adding that 12 percent of all pregnancies in the United States are premature, although Ella’s early case was extreme.
“She’s way, way down at the end,” Johnson said. “She had a very low likelihood of surviving.”
While pregnancies today are considered at full term when a baby hits 37 gestational weeks, Johnson said that 39 and 40 weeks are the optimal lengths.
“We don’t know the outcome or what’s going to be whenever she gets older, but we’ll deal with it,” said Chrissy.
“We don’t know if she’s going to be able to walk correctly or talk correctly, or how bad the brain bleed — or I should say the meningitis — affected her learning,” Blake said.
Those questions will start to be answered as she gets older and reaches school age. But for now, the family is settling into a new routine.
“They reset what they think is normal,” Johnson said of families with children born early. “It’s their daughter, and they will love her no matter what.”
For the time being, the family’s new normal includes home nurses and early intervention specialists, but it also includes a third member of their family, something they weren’t sure would happen.
“It sunk in that the issues she may have and the fact that I may have a child that might not be able to take care of herself for the rest of her life. It’s hard,” Blake said with a pause and a glance down at the infant sleeping in his arms. “But we love her even more, though, because she’s not going anywhere.”