This is the second part of a two-part story that follows the remarkable journey of Jenna and Tom Graber’s high-risk pregnancy, and the Nov. 26 birth of Mya Elizabeth. From how the young couple dealt with both emotional and physical challenges to the reminders they were given about faith, trust, overcoming significant adversity and the good that exists in humanity, this account is an emotional roller coaster full of twists and turns. Better have a box of tissues handy; you’re going to need them.
“God doesn’t give you more than you can handle.”
That’s a phrase sometimes cited by those who have persevered through difficult circumstances, or made it through tough times, thanks to their faith and trust in their Lord.
Tom and Jenna Graber, who last year saw a high-risk pregnancy turn into a best-case outcome, don’t believe that’s true — that “God doesn’t give you more than you can handle.”
“A lot of people feel that, and we thought that, too, as we went through this process,” says Tom, who along with Jenna learned last summer that the baby they were carrying had a hole in its heart — the first in a series of setbacks as Jenna neared full-term. “But what we took out of this is that, yes, God does give you more than you can handle, and that requires you to rely on him to get you through it.”
Tom turns to Jenna, who is cradling in her arms a sleeping, healthy Mya Elizabeth, and asks his wife, “is that accurate?”
“Yeah,” Jenna says softly, gazing down at Mya. “That’s accurate.”
If anybody should know this it’s the Grabers, who relied on their faith and prayer, together, to stay grounded through one difficult circumstance after another. The news that followed their final regularly-scheduled ultrasound late last July, that their baby had a hole in its heart and that the arteries that feed the ventricles were not developing properly, was tough enough to take. But all that followed — news that the baby would need open heart surgery after delivery; that they would be delivering in the unfamiliar surroundings of an Omaha hospital three hours from home; the extraordinary painful test for other birth defects endured by Jenna; news of another defect, pulmonary stenosis; and then a scary first look at the Neonatal Intensive Care and Pediatric Intensive Care units at Children’s Hospital and Medical Center in Omaha — was almost too much to take.
“It was our faith,” Jenna says, turning to Tom, “the deep faith that you and I have together, knowing it’s going to be OK. That got us through.”
“It’s not in our control; it’s not in our hands,” says Tom. “You have to rely on God.”
Part 6: Christmas shopping, thank-you notes and disobeying doctor’s orders
Tom drove Jenna to Omaha to her temporary place of residence, The Rainbow House, the middle of November after doctors discovered the baby’s pulmonary valve was narrowing. There was no emergency, but given the news of yet another defect, the medical team wanted Jenna close to the hospital where she would deliver — from The Rainbow House, a 15-minute drive down Dodge Street and straight to the Methodist Women’s Hospital.
So, she packed up her things and off they went; it was 11 days before Jenna would deliver.
Of course, what was Jenna to do but make the best of her time in Omaha? Remember, she wasn’t in the hospital, she was at The Rainbow House — basically a hotel — and free to come and go as she pleased, as long as she signed in and out. Her mom was with her much of the time.
“Me and Mom had a great time,” Jenna says. “We went for walks every day; we weren’t very far from the Nebraska Furniture Mart so we walked there. We got our nails done, we went Christmas shopping, I did books (for the farm), wrote thank-you notes for the shower they threw for me in Freeman. My mom and I did third trimester pregnancy Yoga in our Rainbow House room. We met some of the residents there; we made some friends. We just hung out. We made the best of a hard situation.”
One morning at breakfast, in the commons area at The Rainbow House, Jenna met a three-year-old girl who had had open heart surgery when she was six months old, and was there with her grandfather for a check-up.
The girl with blond hair spotted Jenna from across the way, crawled off her chair and marched straight over.
“‘Hi,’” she said to Jenna. “‘My name is Sarah.’ It about melted my heart.” Jenna soon talked with the girl’s grandfather and came to find out that he was raising her. He also told Jenna that his granddaughter would be fine, and that Jenna’s baby would be fine, too.
“Look at Sarah,” he said to her.
“That meant a lot,” Jenna says. “Here’s a girl who went through this and is OK and is a happy, happy little girl.”
Although scary, Jenna’s time at The Rainbow House was comfortable. She spent a lot of time with her mom, Deb; her sister would visit, Tom came down when he could get away from the farm, and she got to know the front office staff and security well.
But she got to a point where she had to get out of there, so she disobeyed doctor’s orders, convinced her mom and Tom that she should go home, and left. On Friday, Nov. 24, one day before she would go into labor and two days before Mya would be born, Jenna returned to their cozy countryside house and cattle farm southeast of Freeman and all that she loved.
A clean bill of health at a morning checkup that Friday had given her the courage to make the decision to leave and drive back to Freeman that afternoon.
“So we came home and I got to see my kitties and our dog, Elly,” Jenna says, “and I may have convinced my mom that it was OK to jump on the four-wheeler and go to the corn stalks and check the cows …”
Tom notes that Jenna was set to be induced on Monday and that it was going to be a good while before she would return home after the delivery, “so it was kind of a last trip.”
The night of Jenna’s return to the farm they were putting up Christmas decorations in the house when Jenna starting feeling pain. “It wasn’t like labor pain,” Jenna says, “but it was a consistent, low pain. And my mom’s like, ‘We’re going back to Omaha.’ So that night we drove back. We got back at, I don’t know, 1:30 Saturday morning.”
She went into labor that afternoon.
Part 7: Countdown
Jenna was calm when she called Tom from Omaha around 6 p.m. Saturday letting him know that she was having labor pains — they used an app on their phone to determine that, yes indeed, these were labor pains — and that he should finish up what he was doing and come.
This was early in the laboring process, mind you — so early that Jenna and her mom went to Omaha’s well-known Old Market and enjoyed dinner at Zio’s Pizzeria before walking around looking at Christmas lights. At some point in all this, Jenna texted her doctor — a high-risk pregnancy doctor who the Grabers both say was nothing short of amazing.
“He was a blessing,” Jenna says. “He told us the first time we met him that, no matter what, he would come in and deliver our baby. Keep in mind if you deliver in Sioux Falls, there’s a pretty good chance you’re not going to be delivered by your OB, and Omaha is how much bigger?”
Meanwhile, Tom was hanging guard rail with his father-in-law when he got that initial, calm call from Jenna. But by the time they were done with work and Tom had showered — maybe two hours later — Tom said Jenna’s “calm had gone away.”
Jenna picks it up: “I texted and said things were starting to progress; like, ‘Hey, the contractions are getting stronger and we’re heading back to The Rainbow House.’ I am going to take a bath, try to stay calm, but you need to get here.’”
Tom got to Omaha at 10:30 p.m. Saturday and went directly to The Rainbow House to spend time with Jenna. They were in bed when Jenna’s water broke at 2 a.m., “and I’ve never seen my husband jump out of bed so fast. I thought he was going to hit his head on the ceiling.”
Jenna had texted her doctor earlier that night.
“Hey doc,” she wrote, “I don’t think I’m going to make it to church tomorrow.”
Part 8: Delivery
That all of this was happening in the middle of the night was a blessing to the Grabers, because they knew they would have a clear path to the Women’s Methodist Hospital, where Jenna would deliver before the baby was whisked away to the nearby Children’s Hospital and Medical Center.
“Do you know what Dodge Street is like during the day?” Jenna says. “It’s terrible.”
They made it to the hospital in good time, despite Tom taking a wrong exit.
“I had a small freak-out,” Tom said. “During the day it would have cost us 20 minutes, but I think I blew through a light and we were fine.”
Jenna was 9 centimeters dilated and in pain when they got to the emergency room at 2:30 a.m. Jenna refused an epidural, she said, because she wanted to be well enough after the delivery to make the trip to the children’s hospital to see her baby.
It was strange, but both Tom and Jenna said at this point they had forgotten about the anxiety and adversity that had gone with the news of the defects. It wasn’t even registering that their baby would have to have open heart surgery; they had forgotten about that, too. This was as normal as their pregnancy had felt since walking into Avera in Sioux Falls in July for what was to be their final ultrasound, the day that “something was wrong.”
“This was all joy,” Tom says of the rush that accompanied busting through those ER doors. “Just like anybody else.”
“It was exciting,” Jenna says. “We weren’t in a normal situation, but this felt normal — at the time. It gets worse.”
All along, Tom and Jenna knew that their baby would survive in utero because Jenna was providing all it needed to live, so the urgency didn’t come until after the delivery. Mya was born naturally at 4:43 a.m. in a room full of medical personnel, including a NICU team that would take her away to the children’s hospital. The delivery went well; the staff immediately weighed her, put her in Jenna’s arms, the Grabers had their first family photo taken together, courtesy of their doctor, and away Mya went.
“It was all pretty happy,” Tom recalls. “But about 15, 20 minutes later, it started becoming not fun.”
Part 9: Emergency
Jenna remembers it as “screaming in pain.” Tom remembers Jenna as being “very, very uncomfortable.” Regardless, Jenna, still on the delivery table, had a real problem in that she had not delivered her placenta and they couldn’t remove it. Jenna says she was yelling so hard that her mom had to leave the room.
“The doctor was taking handfuls of coagulated blood and putting it in the trash; handfuls, and then the trash,” Tom says. “He did a very good job of keeping his cool; there was a little bit of time there when they were going to let her try to pass it herself, but she didn’t.”
The placenta had ruptured on the umbilical cord and Jenna had lost two liters of blood; “I remember looking down and thinking, ‘Wow, I really made a mess of their floor,’” Jenna says.
An epidural was no longer a choice, but a requirement, as was emergency D&C (Dilation and Curettage) surgery, a procedure that would see the uterus scraped and the placenta removed.
All this while Mya is in intensive care at the children’s hospital and soon to be a surgical patient herself to repair the hole in her heart.
“What we had talked about was, under any circumstance, I would go with Mya,” Tom says. “What we didn’t foresee was the retained placenta and the fact that Jenna was going to have to have surgery.”
Tom went with Mya anyway and Jenna was left to face the hour-long surgery herself.
She states the obvious: “It was hard and scary. Your daughter’s getting whisked away, I’m laying here on this table, still having awful contractions, my husband’s not with me and they put the mask on. I remember thinking, ‘Please God, let me wake back up.’ That’s all I remember. I’m staring at the ceiling and all these nurses are running around me as quickly as they can, the anesthesiologist who was going to put me out was yelling at them, and I just remember thinking, ‘Please let me wake back up.’
“And I did.”
Jenna was told that she had lost so much blood and would not be able to leave for the children’s hospital to see her daughter until she could get out of bed and walk to the bathroom without passing out, “and I couldn’t even sit up.
“That was the worst day ever.”
Meanwhile, Tom was filling Jenna in on Mya’s status; how the newborn, still a few days away from her open-heart surgery, had to have an emergency procedure, too, and that she had quit breathing, “and I’m here at this hospital getting these texts and phone calls and I can’t get over there and Tom is by himself going through all of this …”
What had happened with Mya was this:
All babies are born with a natural hole in their heart designed to keep the blood flowing initially before quickly closing up. Because of Mya’s condition, doctors needed to keep that hole open for a longer period of time and, to do so, gave her a hormone called prostaglandin. Not only did it not work, it caused her to stop breathing.
“But they were prepared for it,” says Tom, who was watching the whole thing. “It was definitely scary, but it wasn’t like buzzers and alarms going off and people running everywhere.”
Indeed, it was merely a matter of seconds before Mya’s breathing was helped along by being intubated, and the road to recovery was underway. But Mya was not stable and, given her difficulties in the hours following birth, doctors chose to accelerate her scheduled open heart surgery.
“They had talked about maybe going as long as a week before doing that,” says Jenna, “but it ended up being only two days.”
Jenna, meanwhile, eventually got where she needed to be following her surgery — “barely,” she says — and was taken by ambulance from the women’s hospital to the children’s hospital to see Mya. It was about 8:30 p.m., almost 16 hours after Mya was born.
“I cried,” Jenna said upon seeing Mya in the NICU.
“See, I had been there through the whole thing, so I watched it all happen,” says Tom. “She saw her (in her normal state) right after she delivered, and then walked into this, with wires and tubes all over the place, and it was a shock.”
Part 10: Home stretch
Jenna, who had delivered Mya at Women’s Methodist Hospital 15 minutes away, was given her own room in the same hospital where Mya was being cared for in the NICU — “they wanted to keep an eye on me” — and was given a blood transfusion, doctor’s orders, on Monday, the day after Mya was born. This was also the day that Tom and Jenna learned that Mya would have open heart surgery on Tuesday, well in advance of what was originally scheduled.
Mya was taken to surgery at 7:30 a.m. — 30 minutes later than scheduled.
“Do you know how hard it is to watch your baby wheeled away?” Jenna says. “It was terrible.”
“Nothing like it,” says Tom. “Actually, the reason it ended up being 7:30 instead of 7 is because we were waiting for a chaplain to pray with us.”
“He got stuck in traffic,” Jenna says. “And then, bless her heart, one of the nurses prayed with us.”
Tom and Jenna knew Mya’s chance of survival was very good — 90 percent, in fact. Had that third defect, pulmonary stenosis, not been in play, Mya’s chance of survival would have been 98 percent. Still, nerves were on alert.
“They knew they could fix it,” Tom says. “They just didn’t know how they were going to fix it. With that other hole not being closed up, they didn’t know what they were going to find. But it ended up turning out OK.”
At 4 p.m. the day of the surgery — 8 ½ hours after seeing her off — Tom and Jenna saw Mya again, this time in the PICU, where it’s one nurse per child. There she was, looking tough, but with a heart between the size of a quarter and a golf ball that was pumping away. They knew, because her chest was open and they could see it for themselves.
“We got to see her heart beating, and it worked!” said Jenna.
“I didn’t know that was possible,” said Tom. “The surgeon told us when she came out of surgery that he chose to leave her open and I was like, ‘Woah, woah, woah, woah, hold on a second. What?’”
All told, “it went awesome,” Jenna said of the surgery, a sigh of relief washing across her face as she recalls what ended up being good news followed by good news followed by more good news.
“We met with the surgeon immediately after he was done and he said it went fantastic; even better than they expected,” Tom said. “The pulmonary stenosis, which would have been the defect that caused her to have more surgeries throughout her young life, was deformed, but was working fine. So that was the big, big, big victory in the whole thing, that he did not have to put artificial parts in her heart. Because those artificial parts don’t grow and, as she grows, that’s what creates more surgeries.”
As for the rest of Mya’s fix, it was simply a matter of the surgical team switching the coronary arteries around and patching up the hole with a synthetic piece that the heart will grow around as Mya grows.
“It’s just amazing what they can do,” Jenna says. “The sutures they used to stitch her back up were the size of a hair. And they never go away. They stretch with the heart.”
The Grabers were told they would be in the hospital seven to 10 days after surgery “if everything went just peachy.”
“And it didn’t,” Jenna and Tom say together, in unison.
Mya had to be kept on the bypass machine longer than planned, which is why they needed to keep her chest open; that allowed the medical team to better monitor her progress. All of that, in turn, extended her recovery time in the hospital.
“It was a domino effect,” Tom says.
The Grabers ended up being in the hospital 22 days post-surgery. During that time, Mya started breathing on her own and, five days after surgery, Tom and Jenna finally heard her cry for the first time.
“We said we will never ever complain about her crying,” says Jenna after re-watching the moment on her iPhone. It’s not the only moment from the ordeal they have preserved; the iPhone’s camera roll includes all kinds of photos, of the first family picture taken by their doctor, of Mya hooked up to machines, of up-close moments between Mya, Mom and Dad, and video of that open heart, beating away on its own, a drum of brand-new life, set to take off.
Part 11: Goodbye, Omaha, hello new life
The Graber family was released from the hospital with time to spare before Christmas, on Thursday afternoon, Dec. 20. It was one month and five days after Jenna was admitted and 25 days after Mya was born. On their way home, they stopped at Pizza Hut in Sioux City.
“It was weird,” Jenna says. “I had fed Mya in the car first and then going in with her it was, like, ‘Wow, we have a baby. We have a baby!”
“It was cool,” says Tom.
And then they got home.
“And I full-out cried,” Jenna said. “In a good way.”
“Yeah, in a good way,” adds Tom. “All-out tears.”
In the days that followed, Tom and Jenna were focused on keeping up her weight gain; “It’s scary because you don’t have nurses right there to ask,” said Jenna, who noted Mya had her first echo Friday, Jan. 5, and they got a clean bill of health.
“The doctor told us her chances of having another surgery were going down,” she said. “The surgeon did such a good job. It was fantastic news.”
And Mya had gained so much weight that the pediatrician made the nurse weigh her again, because he didn’t believe it.
There were, and continue to be, weekly checkups at Avera, “but they’re less and less intense,” Tom said early this week. Her weight was 9.1 — up from her birthweight of 6.1 — as of Tuesday.
Given all that transpired, all is normal on the Graber family farm. And Tom and Jenna are left with intense feelings that they say are hard to describe.
“I can’t tell you how many stretched out their hands to us,” Jenna says. “The support we got was unbelievable — people sending cards, sending texts, our churches raised money for us; we never thought we’d be getting that.”
“You never think that you would need to be the beneficiary of a fundraiser,” said Tom. “You will never need to be prayed for weeks on end in church. That will never be you. And it was us.”
“And now we know the importance of a text or a card,” says Jenna. “When somebody else is going through something, to take the time to do those things for somebody in need, because when you’re in that position, you appreciate it far more than you could ever say.”
Says Tom: “Now that we’ve gotten through it and we’re home and everything’s on the up-and-up, we get the chance to do the same for others, to reach out our hands and help in the same way that people helped us.”
Part 12: And this
A few closing notes.
While Mya and Jenna’s lives were never really threatened, it was not without tense, tough moments that required the best care possible, which they received in Omaha. Tom and Jenna were told that, had this happened to their grandmothers, both the baby and the mother would have died.
And that doctor in Omaha who delivered Mya? The one who Tom and Jenna loved so much? Turns out he and his wife lost a daughter at birth years ago. It happened to be on Nov. 26 — the day Mya was born. She would have been 14 years old.
“So that was an odd coincidence that I really don’t think was a coincidence,” says Jenna.
One more coincidence that might not be a coincidence: The day of Mya’s open heart surgery, on Nov. 28, was the day three years ago that Tom suddenly lost his mom, Carol, to a surgery gone wrong. This one, of course, went right.
“The end of November is a tough time,” Jenna said. “Her open heart surgery was on the day that Carol died.”
So what to make of that?
“Just God,” said Jenna.
“He re-wrote the day a little bit,” Tom said. “It will always be a sad day for us, but now we have a reason for it to be a very happy day.
“It was a very hard day that ended very well for Mya.”
And for everyone involved.