With two young boys, ages 4 and 2, Diana Gallegos and her husband learned they were expecting yet again; and this time, it was a baby girl. They were overjoyed about expanding their family. Diana’s first two pregnancies were full-term with no issues, and there was no indication that this third pregnancy would be any different.

During the second trimester, things began to change. She experienced back pain, kidney stones and hair loss. Then, when she was 23 weeks, her water broke. Diana and her husband rushed to the hospital. She was monitored as high risk and placed on bedrest.

Two weeks later, she became dilated to three centimeters, which cued her doctor to intervene. Diana was taken into the labor and delivery room for a C-section. The risks were very real for Diana and her family, as only 75 to 85% of babies born at 25 weeks survive. Diana also faced a very serious risk to her health while giving birth.

“I was really scared. They gave me the epidural, but I was still feeling the pain and screaming. So, they put me to sleep during the delivery because I was in so much pain,” said Diana. “I woke up in the recovery room, and I was asking, ‘Where is my baby? How is she?’ And they wouldn’t give me details until the doctor came. When the doctor showed up, she said that I had lost lots of blood and that Sophia was doing good… but not too good.”

Diana was able to finally see her baby girl for the first time the next morning, but nothing could prepare her for just how small her micro-preemie baby really was.

“She had all these monitors. It was scary to see all that, and she was so tiny,” said Diana. “It was so emotional. I had never thought that I would have a premature baby. It never had even crossed my mind. In my family and my partner’s family, there has never been a premature baby. So, it was a whole new experience.”

Sophia was born February 6, 2021, weighing just one pound, six ounces. She still faced many hurdles ahead.

Issues included intrauterine Growth Restriction (or failing to grow during pregnancy), bronchopulmonary dysplasia (a chronic lung disease that causes long-term breathing problems in premature babies), a subglottic cyst (a fluid-filled lesion in the lower part of the larynx below the vocal cords), difficulties with aspiration and more.

“The first few weeks I couldn’t hold her. I could only touch her, but just for very short periods of time. So, we would just stay there looking at her and just amazed that she was still living,” said Diana.

Sophia also began getting mysterious fevers, which delayed a hospital transfer. When she was two months old, she was able to transfer to the Neonatal Intensive Care Unit at Children’s Hospital & Medical Center in Omaha. As the only Level IV NICU in Nebraska, Children’s offers the most advanced level of neonatal care available. Their highly specialized, expert medical professionals treat nearly every condition a newborn baby may have.

“They told us they would do everything they could to keep her alive. She was losing so much blood, and so they were giving her blood transfusions. And then she had issues with her heart, kidney and liver. So, they were waiting to see how everything came out on their tests,” remembered Diana.

Fortunately, many of the issues resolved on their own as Sophia grew. Then came the moment when Diana could finally hold her baby girl in her arms for the very first time.

“I was so scared to hold her with the breathing tube and all the IVs she had. I just had to be very careful. She was so fragile,” said Diana. “But holding her, skin-to-skin, was the best feeling ever.”

Doctors determined that Sophia had issues with her vocal cords, and. because she was aspirating quite a bit, they decided she needed a G-tube placed to help her get proper nutrition.

“Over the last couple months in the NICU, she began to gradually improve, and she was starting to come off the oxygen. She started feeding with formula, but we had to be very careful how it was done since she had significant issues with her vocal cords,” said Diana.

Sophia was five months old when she was ready to go home. This milestone came only after Diana received extensive training on proper outpatient care for a micro-preemie baby.

“In the last couple weeks, I started working with the feeding team, learning how to make the formula the safest way for her to drink it,” said Diana.

Diana spent the last couple nights in the hospital practicing with assistance from nurses before she was given the clear to take Sophia home.

Now, in November 2021, during National Prematurity Awareness Month, Sophia is nine months old—happy, healthy and thriving. She’s expected to finally be taken off oxygen after a sleep study later this month. Diana said there do not seem to be any long-term issues, thanks to the medical team who helped her micro-preemie baby grow stronger. Sophia will be visiting the feeding therapy team in the outpatient clinic every few weeks to help her learn to eat properly and will follow up with the cardiology team and respiratory team to make sure she’s on track in those areas as well.

“I want to say thank you for everything the doctors and nurses did for my baby. The care was excellent,” said Diana. “There’s no other place I would rather her be than at Children’s.”

What started as a suspected case of pneumonia for little Axton Myers turned out to be his parents’ worst nightmare. The spunky 2-year-old with boundless energy, who loves puzzles, reading, and playing with his grandfather, began having trouble breathing. After multiple rounds of tests, scans and X-rays, doctors at Children’s Hospital & Medical Center in Omaha discovered that Axton had developed a mass of cancer cells that were pressing on his airway and windpipe. Sarah Myers, Axton’s mother, vividly remembers holding Axton on her lap when doctors explained that her little boy, her only child, had T-cell leukemia.

The next thing Sarah and her husband, Jason, remember is Axton being whisked off to the Pediatric Intensive Care Unit (PICU) so doctors could immediately start working on dissolving Axton’s mass. While he was there, he had a central line placed and underwent a procedure called apheresis, where a patient’s blood is essentially “cleaned.”
“It was such a scary experience, but we knew Axton was in the best of hands,” said Sarah. “The team was patient with us, explaining everything that was happening and why, and willing to answer our questions, even if we asked them 100 times.”

Axton started chemotherapy on his second day in the PICU and entered into what is referred to as the induction period, a 10 to 12 month period of procedures cancer patients go through before entering into a maintenance phase. He was in the hospital for almost an entire month and then was able to go home.
After the first month of chemotherapy, Sarah received the wonderful news that Axton was in remission, something that can sometimes take several months. Because Axton was doing so well with his treatment, he was saved from having to receive any radiation.

“The whole process has been extremely regimented, and Children’s made it so easy by mapping it out for us,” said Sarah. “In addition to providing a binder of detailed materials outlining what to expect and when, Children’s also provided access to an educator, who made everything a little less overwhelming.”

Today, almost two years into his journey, Axton is now in the maintenance phase and his treatments are not as intense. He will continue his treatments until February 2023.

“He has been a real trooper through it all and doesn’t mind going to the hospital for his routine spinal taps and infusions,” said Sarah. “According to his doctor, he is doing amazingly well and getting through the treatments with ‘flying colors.’ His dad and I are so grateful.”

Sarah said she’s also thankful for the compassion and care shown to her family at Children’s.

“I’ve never been in a situation where health care was so incredibly loving and comfortable to be around. And the team is fighting with us. I’ve never experienced that before. I didn’t know that there was such a thing until I was put into this situation. And when I say my team, it warms my heart because they have been and continue to be with us every step of the way,” she said. “Everyone we encountered, from the oncologists, nurses, social workers, child life specialists and the chaplains, has been outstanding, and we are so fortunate to have this type of support network.”

When asked about advice she would give other parents going through a similar cancer journey, Sarah says to “accept help” and, above all else, “stay positive for both you and your child.”

It was November 2019 and the Fangman family had just finished Thanksgiving dinner with their six children. Their youngest, Katie, was an active toddler and had been pretty healthy for her first 20 months of life. That day, Nicole, a former critical care nurse, and Ben, a physician, noticed Katie was a little tired, had a runny nose and a small cough, but didn’t think too much of it.

“Being a doctor and a nurse, we are a tiny bit overprotective,” Nicole laughs. “I had Ben listen to Katie’s lungs before putting her down to bed that night and he didn’t notice anything unusual.”

The next morning as Ben walked into Katie’s room to get her up for the day, he didn’t realize his whole life was about to change.

Ben looked down into the crib and Katie was lethargic and unresponsive.

“We didn’t know what was going on,” explains Nicole.  “I thought in my head, did she eat something, did she get poisoned somehow? We just had no idea what was going on. It was a nightmare, and we were so scared.”

Nicole and Ben immediately scooped her up and knew they needed to head to the Emergency Department at Children’s Nebraska, which was thankfully less than a 15-minute drive away.

Upon arriving to the hospital, Katie’s oxygen levels were dangerously low. Children’s team took a chest X-ray which showed she had a bad pneumonia and acute respiratory distress syndrome. Katie was immediately given oxygen.

“Everything happened so fast. They put her on the strongest oxygen possible through a mask,” remembers Nicole. “Then, before you knew it, we were in the Pediatric Intensive Care Unit (PICU). We just didn’t know what on earth was going on.”

Katie’s case baffled the doctors, too, since she was previously healthy. They began running tests to try to understand what was going on, and eventually had to intubate Katie due to her needing more and more oxygen.

Soon after, bloodwork came back and revealed Katie had respiratory syncytial virus (RSV) and pneumonia, which had been setting in for several weeks. The doctors concurred that the combination of these two diagnoses must have taken out her immune system overnight, causing her to become so sick.

“We were so scared and were worried they wouldn’t be able to find a way to treat her,” says Nicole. “The doctors were quickly trying to figure out the next steps and put a plan together for Katie because she was going downhill quickly.”

Soon, the topic of extracorporeal membrane oxygenation (ECMO)—the most advanced form of life support—was brought up. ECMO is commonly used for heart patients, but the team discussed putting Katie on a special kind of ECMO called Veno-Venous (VV) ECMO, specifically for respiratory patients. For Katie, ECMO would be used to bypass her lungs and oxygenate her blood outside of her body so her lungs could recover. Because Katie was at Children’s, a team was immediately able to be assembled to begin treatment.

“All I remember was as soon as ECMO was mentioned, there was a huge team of people at the bedside within about five minutes. It was amazing to me how quickly the team was able to come together,” remembers Nicole.

Children’s Nebraska is the only children’s hospital in the region to offer ECMO for infants, children and teens, and specialize in this treatment for critically ill pediatric patients. Katie had come to the right place. Children’s PICU is designated as a Center of Excellence in life support, with processes, procedures and systems in place that promote excellence and exceptional care in providing ECMO to young patients. The team also collaborates with professional organizations like Extracorporeal Life Support Organization (ELSO), an international group of professionals who share data and information about ECMO use.

Katie remained on ECMO for 53 days, the longest any patient has stayed on ECMO at Children’s.

“The treatment was touch and go for a while. I remember just holding Katie’s hand and praying that it would work,” says Nicole. “Katie was on heavy sedatives and would get chest X-rays every day. It wasn’t until right after the new year that we would have a huge break in Katie’s treatment.”

Katie would regularly receive chest X-rays, but in January 2020, she received a CT scan that revealed large abscesses from her pneumonia in her lungs. She was put on antibiotics and the nurses would suction her every day. One day, a nurse was suctioning her, and miraculously, a large clot came out.

“That was our turning point!” explains Nicole. “It was amazing. Her airways opened and her lungs started moving air. At that point, things were a lot better, and we were able to take her off ECMO. I finally got to hold her for the first time after two months and held her for eight straight hours.”

Although there were still a few setbacks, Katie was eventually able to move down to the step-down unit and start weaning off the medications and begin rehab. Her brothers and sisters even got to come visit her in February to celebrate her second birthday.

“It was amazing to watch her brothers and sisters interact with her. She had this balloon, and she would hit each of them on the head with it when we said their name,” Nicole explains. “It was during this exercise that we knew Katie had full brain function because she was able to remember everyone’s names. I was so relieved!”

Katie did have to receive a tracheotomy after coming off ECMO which helped her to be able to move around even with the ventilator. She did so well at rehab that her nurses called her “the miracle child,” and within a couple of months and intense rehab, Katie was even able to get the trach out.

“The doctors told me there was something very special about her recovery,” says Nicole. “I can’t begin to thank the doctors and nurses in the PICU enough for everything they did to get Katie home. They took care of her, and they took care of us. They just didn’t miss a beat, and it was amazing. They are special people and truly do it for the kids.”

Katie was treated in the current PICU at Children’s, but in late August 2021, a newly renovated 32-bed PICU will open in the Hubbard Center for Children. The same highly trained and specialized staff will be on the unit, but the space will feature rooms with more natural light and larger sleeping areas for parents who are staying overnight.

Children’s PICU offers a full range of pediatric medical and surgical specialists, in departments from neurology to cardiology, and is continuously staffed by physicians, nurses and other providers who are trained in the care of children with critical illness and injury. Compared to other PICUs of similar size across the country, the patient outcomes are among the best. Children’s also has a Critical Care Transport Team with specially trained emergency medical technicians and registered nurses who transport critically ill patients up around the region and across the country. With the addition of the PICU in the Hubbard Center, Children’s will have one of the largest PICU bed counts in the region.

“I am so impressed with what I see happening at The Hubbard Center. It is going to be so nice to have a building dedicated to the PICU,” says Nicole. “It is going to be a game changer to have everything together and have all the facilities right there like the operating rooms, testing areas and radiology. I love the design and love how modern and fresh everything looks.”

Today, Katie is a thriving 3-year-old and not having any issues after being in the hospital for all those months.

“She is such a girly girl. She loves Barbies and Peppa Pig and dressing up,” said Nicole. “She loves running after her white fluffy dog and doing all kinds of crafts and painting. I am so glad we have our little girl back. If it wasn’t for our wonderful nurses, Hannah, Rachael and Ashley, and the amazing doctors like Dr. Ortmann, Dr. Solomon and Dr. Norton, I honestly don’t know if she would be here today. I just feel so blessed to be in a state that has a hospital like Children’s that has the capabilities to take care of complex patients like Katie, and I look forward to seeing what the Hubbard Center will bring to our city.”

Born premature at 30 weeks, Victoria was born with a heart condition known as cardiomyopathy. This means her heart was bigger than normal, making it difficult for her heart to pump blood to the rest of her little body.

Because of her small size, doctors did not want to do surgery right away. Instead, they waited and put her on medications to control the condition. As a result of her heart issue, Victoria also developed hearing neuropathy or hearing loss, because of all the fluid she had accumulated.

After spending four months Children’s Neonatal Intensive Care Unit, Victoria was finally able to go home.

“She was discharged with a feeding tube down her nose because she still needed to gain more weight. She was on a ton of medications to treat the cardiomyopathy, and was really tiny,” says her father, Martin. “She was still wearing baby doll clothes, not even preemie sizes.”

Overall, she did OK at home but was susceptible to every cold or virus in the air. For several years, though, Victoria stayed the course, and doctors continued to treat her condition with medication.

However, eventually, the drug stopped working. Victoria’s parents were told the only way their only child would survive would be to receive a heart transplant.

“We really thought Victoria would go on to have surgery but not need a transplant,” says Martin. “The idea didn’t even cross our minds, and it was terrifying.”

So, at 3 years old, Victoria was put on the heart transplant waiting list at Children’s Nebraska in Omaha.

At this point, Victoria was not doing well. She was tiring quickly and constantly sick. Doctors also didn’t want her to lose any more weight, so Victoria was admitted and waited for her new heart in the hospital. During this time, Martin and his wife were grateful for the expert pediatric team caring for their daughter, particularly the Child Life specialists who would distract her with games and other fun activities.

Eventually, though, Victoria got extremely sick – so sick she was put on a ventilator and developed blood clots.  After a month, she was taken off the ventilator, but her overall condition had not improved.

“There are no words to describe how hard it is to watch your child get sicker and sicker,” says Martin.

Three weeks later, at 2 a.m., Martin and his wife received the news they were waiting for: a new heart was on its way for Victoria.

“It was the middle of the night, and when I answered, I heard them say, ‘We have a donor. Get over here as fast as you can,” remembers Martin. “When I arrived at the hospital, they were already there waiting, and they told us that they had a match. They were waiting for the heart to arrive so they could take her down and start the process.”

Before the surgery, Martin and his wife experienced a myriad of emotions.

“We were nervous, scared and happy all at the same time. But we were also sad because we knew for Victoria to receive her heart, another child had to pass away,” says Martin.

While Victoria was in surgery, her parents received updates as they waited. After about nine hours, they received the news that Victoria’s transplant was successful and that everything looked good.

“When we saw her, it was shocking because her whole chest was open,” says Martin. “Seeing her with all the tubes and wires was unsettling, but she was there and doing well.”

The following 72 hours were critical. Victoria made it through with flying colors.

In total, she spent four and a half months in the hospital, and, amazingly, had no complications.

Today Victoria is 5 years old. This past May 3, she celebrated the second anniversary of her heart transplant and has been doing great since. All her numbers look good, and she’s experienced no rejection.

To date, Victoria and her parents have not met the family of her donor – a little boy who loved Spider-Man and always wanted to be a superhero.

“In our eyes, he is a superhero,” says Martin. “He was saving lives, and that is pretty cool.”

The families have exchanged letters and pictures, but the donor family is not quite ready to meet.

“On her second anniversary, we went to Build-A-Bear. We built a stuffed Spider-Man and inside it, we tucked a recording of Victoria’s heart,” says Martin.

The donor mother wrote back that she loved and cherished this special gift.

Victoria’s parents are incredibly grateful to the staff at Children’s Nebraska for taking care of their only daughter.

“It’s a great place—the staff, the nurses, the doctors. I mean, we’re so grateful for them, for all they do. They go above and beyond to help you. We’re particularly thankful for cardiologists Dr. Ballweg and Dr. Spicer and heart surgeon Dr. Ibrahimiye,” says Martin.

This fall, Children’s Nebraska will help even more patients like Victoria with the opening of its new Hubbard Center for Children.

This state-of-the-art facility will offer a wide array of new and improved features, including a 32-room Cardiac Care Unit, a solarium and an outdoor viewing garden for patients and parents to relax. From minor murmurs to major defects, disorders and diseases, Children’s offers comprehensive cardiac care programs for both children and adults with congenital heart issues and provides care for patients of all ages, from before birth through young adulthood.

“We are really excited to hear about the opening of the Hubbard Center. They will be able to help many more families like they did ours,” says Martin. “This type of cardiac care is so needed in our region, and I am glad they are investing in it.”

As for Victoria, she’s about to start kindergarten and loves watching the movie Dolphin Tale.

“She has seen that movie more than 100 times so far,” said Martin. “The actual dolphin from the movie named Winter lives in Clearwater, Florida, and we are going to take Victoria to meet Winter at the end of July. She is so excited and asks us several times a day if it is time to leave to meet her. We’re grateful to Children’s for giving us this opportunity to spend these special moments with her.”

Nola was 3 years old when her mom, Heather, started noticing something different about her. Nola started complaining about leg pains and wasn’t interested in playing with the other kids. Instead, she would retreat to her room to play games and watch TV.

“I was worried about her. She wasn’t acting like herself at all,” explains Heather. “I took her to her pediatrician, and they told me she was likely having growing pains in her legs since she was on the path to be a very tall little girl.”

Heather wasn’t exactly sure what to think but took the advice of her pediatrician and took Nola home and kept watching her. A few months later, Heather went in to wake up her daughter and was surprised to see bruises all over her body. They were all over her arms and legs, and Heather knew her daughter hadn’t had a fall or been playing rough recently.

“I had no clue what was going on, so I took her back to the doctor and they ran some bloodwork,” said Heather. “I took her back home and, within an hour, the doctor called us and told us we needed to head to the hospital immediately.”

Heather received news that a mother never wants to receive. Nola had leukemia and needed to start treatment right away. It was April 24, 2019, a date Heather says she will never forget.

“As soon as I heard that word, I lost my breath and went and threw up,” remembers Heather.

Luckily, Heather was only 10 minutes away from Children’s Nebraska. Children’s has doctors that specialize in diagnosing and treating a wide range of childhood cancers and blood-related conditions, and Heather’s pediatrician had arranged for her to meet with the team right away.

When Heather arrived, they began hooking Nola up to IVs and doing lots of bloodwork to identify the exact cancer Nola would be fighting. They performed a spinal tap, and Nola needed a blood transfusion and platelets. The next day they learned Nola had acute lymphoblastic leukemia (ALL) and it had spread across 99% of her little body. Also called B-cell acute lymphocytic leukemia, this cancer is an aggressive and fast-growing type of leukemia in which too many B-cell lymphoblasts are found in the bone marrow and blood. It is the most common type of acute lymphoblastic leukemia.

The treatment plan would be two and a half years of chemotherapy, a special type of drug used to kill cancer cells. In the first year, Nola would receive chemo five days a week and, like many cancer patients, Nola would get sick very easily during her treatments due to a compromised immune system. She would end up spending six months out of that first year at Children’s.

Heather worked at the Oak Hills Country Club in Omaha, and when Nola got sick, she wasn’t able to work much at all during that first year.

“We spent so much time in the hospital that first year,” explains Heather. “My mom and sister would help me with my other three children, and my job was so understanding and let me be at the hospital with her whenever I needed. My mom and I would switch off so I could leave each night for a few hours to shower and spend time with my other children. I’m not sure what I would have done without my wonderful support system.”

Heather explained how the members at the country club were constantly looking for ways to help.

“They wrote us checks, paid for stuff for us and sent us money,” remembers Heather. “My mom and I would use the money to send stuff to the hospital like toys and crafts and a whole bunch of tie blankets that we would make. It was so touching to see how extremely supportive everyone was.”

During her hospital stays, Nola would get a spinal tap almost every week to make sure the cancer hadn’t spread to her spinal cord. She needed lots of platelets and blood infusions, and when COVID-19 hit in the spring of 2020, she was getting COVID-19 tested regularly before each treatment.

“During this time, the hospital and staff were amazing. They have staff that volunteer to play with kids and there would be people coming in the room almost every day to come play playdough with her or have a tea party or sing songs with her,” remembers Heather. “Every nurse that would come in would play and talk with her. It meant so much that they cared so much for her.”

Even though Nola was battling cancer, she has fond memories of her time in the hospital and she was excited to tell us about it.

In her sweet little voice, Nola chimed in, “And they would bring the dog into the room, and I would pet her, and they would play tea party with me.”

In the year and a half after her long hospital stays, Nola’s treatment went from five days a week to having to come in every other week and then monthly. She is now only a few months away from the completion of her treatment, and then will be on a maintenance plan where she will only need to be checked a couple times a year to make sure she is still in remission.

Today, Nola is a happy 5-year-old. She is healthy, playful and, according to Heather, a big talker and a big eater.

Nola felt this was a good time to chime in again: “I like fruit, not vegetables.”

Heather credits the wonderful team of oncologists, nurses and staff members for getting Nola and her through this incredibly hard journey.

“They have done the most amazing job, not only with me but with Nola,” said Heather. “They always explained everything to her before doing any procedure and would explain exactly what was going to happen. They would let her ask all her questions and make sure she was ok with everything, even though she was only 3 years old. There wasn’t anything she asked for that she didn’t get.”

Heather even remembers a time when they were the last patients in the Infusion Center that day and the nurses came over to Nola and asked if she wanted to play hide and seek.

“They were running around the Infusion Center with Nola’s IV pole in tow, hiding from each other. It was the sweetest thing,” remembers Heather.

This fall, Children’s will be opening the Hubbard Center for Children and will be investing even more resources into helping children like Nola who are diagnosed with cancer. An entire floor will be dedicated to children and teens diagnosed with cancers and blood disorders. Having a dedicated floor will improve infection control for immunocompromised patients and allows children to get out of their rooms as much as possible.

Heather feels this will be a game-changer for these kids.

“I think what they are building for these children is so amazing,” said Heather. “When Nola was first diagnosed, we were watching them build this new part of the hospital, and it was so cool to watch. These kids who are getting diagnosed with these rare diseases and cancers like Nola are really going to benefit. It’s amazing to see all the technology they are adding. To know this new facility will help all these children survive and be able to have a better life when they get older means so much to us.”

Heather is thankful that Nola’s cancer journey is coming to an end. While her past two years have been turned upside down, she still feels like she has so much to be grateful for.

“This was a crazy adventure, but I am so grateful that I live in a city that has a hospital like Children’s to care for Nola,” said Heather. “Every single person we encountered—from the doctors, nurses, Child Life staff and volunteers—has been so caring, and we both wouldn’t have been able to get through this experience without them and the support of our community. Thank you, Children’s!”