Life hasn’t been easy for little Naomi Sudbeck.
But she keeps on fighting.
Before Naomi’s birth on Oct. 1, Luke and Tara Sudbeck of Ogallala were told their baby’s kidneys were enlarged. Plus her bladder wasn’t holding any urine, which explained Tara’s continual decrease of amniotic fluid.
At that point, Luke — who is the son of Marcel and Deb Sudbeck of Norfolk — and Tara were referred to Children’s Hospital Colorado in Denver, where they met with a panel of doctors to discuss Naomi’s diagnosis — autosomal recessive polycystic kidney disease.
“They basically gave us a choice, an option, on whether we wanted Naomi to be born and then just be comfortable and basically go on her own in peace. Or if we wanted to intervene and do dialysis and, eventually, if it got to the point of transplant, do a transplant,” Tara said. “They gave us those two options and we went home on that. But it was never an option to just let her die. It was never a choice. We wanted to intervene as long as it wasn’t messing with her quality of life. We wanted to try. We felt like we owe that to her. She’s our child.”
The following week after that appointment, Tara started having contractions. She was flown from the hospital in Ogallala to Children’s in Denver, where they successfully stopped labor. However, she had to stay in Denver until Naomi was born — a month-and-a-half later at 37 weeks into Tara’s pregnancy.
To complicate matters, Tara was transferred to University of Colorado Hospital because she came down with mononucleosis.
“It was a scary few weeks. It was already terrifying to know you have a baby ... because they gave her, if she were to survive more than a few hours, they gave her a 1 percent chance of survival because her kidneys were so large and full of cysts and non-functional,” she said. “The looming fear of when she’s delivered is how long is she going to survive? And now, I’m in a different hospital.”
But Naomi defied the odds from the moment she was born, Tara said. She was breathing on her own right away and started sucking on a pacifier immediately.
“She’s really, really, really strong. If you talk to any of her nurses, they’re all going to say she is just the strongest baby. She has ripped out her feeding tubes, taken out her central lines,” Tara said. “She’s just got this fire. She’s not going to back down. And she hasn’t.”
Naomi has already had 10 surgeries, one of them was to remove her left kidney at 2 days old. She’s also had a blood dialysis line put in her neck to her heart. She had a peritoneal dialysis line put in and has undergone hemodialysis.
“One time when we were going on hemodialysis, and she coded because her blood pressure dropped,” Tara said. “We thought we lost her. We thought, ‘OK, this is the end of our journey. We did everything we could and we are so happy for the time we had with her.’ But she stabilized and she was fine.”
After being sedated and intubated for a few weeks, Naomi continues to improve. She doesn’t have a breathing tube anymore, just a feeding tube in her nose, Tara said.
“Every challenge she’s come across, she’s already overcome that hurdle. It’s amazing to watch her,” Tara said. “We’re reassured by the choice that we made that we knew we had to try. We knew we had to fight for her because she’s fighting for herself.”
Tara said Naomi is doing peritoneal dialysis and needs to get up to a certain fluid level to take off more fluid. Naomi also needs to get more comfortable and successful with feedings.
“When she gets strong enough, unless for some reason we have to do it earlier, she’ll have a nephrectomy of her right kidney, the remaining kidney — which is 14 centimeters now, probably 1 pound or more, is how much it weighs. It’s taking up a lot of room in her abdomen. It’s pushing her stomach over, her liver, intestines,” Tara said. “That kidney is making everything challenging, but we don’t want to risk another surgery right now, especially since she (isn’t taking in) adequate nutrition. We just want to make sure she’s at the best spot possible for another risky surgery. ... There’s a lot of factors they have to figure in for that nephrectomy.”
After the surgical removal of the kidney, Naomi will be put back on dialysis — hopefully home dialysis — and wait in line for a transplant when she’s 2 or 3 years old. That’s the best-case scenario, Tara said.
Until then, the Sudbecks are riding the emotional roller coaster they face daily. Luke comes to Denver on the weekends, while Tara and her 4-year-old daughter, Mia, — when she’s in Denver — stay at the Ronald McDonald House for families with a hospitalized child. The rest of the time is spent at the hospital, Tara said.
“Some days are better than others. Some days we’re really anxious, and things aren’t going well,” Tara said. “I absolutely love and cherish the good days and then when the bad days come, ‘It’s OK, there’s going to be another good day around the corner.’ ”
She said the family stays strong for each other so they don’t fall apart.
“I feel she can sense our positivity or our negativity,” Tara said. “We have the support of so much family and friends, and so many prayers from them that I think that’s what keeps us even stronger.”
The Sudbecks said they feel so blessed to have the time they do with Naomi, and so grateful for the “warrior prayer group” that has come together for their daughter.
“Prayers are what’s gotten us through. She’s a miracle. She’s survived that 1 percent,” Tara said.
Tara said it’s just amazing to watch Naomi, and to witness her strength.
“Sometimes Luke and I feel like we’re so weak compared to the spirit of our child. We feel like this is it, today’s the day, this is the end and she fights her way through and we just, we don’t know where that strength comes from,” Tara said. “It’s just amazing. Then we’re like ‘Gosh, I can’t believe we were doubtful again.’ She’s going to do this. She’s going to make it.”
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Want to learn more?
A GoFundMe account has been set up for Naomi. It can be found at “Naomi Grace is Defeating the Odds.”