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!”

It was the summer of 2015 when Lindsay found out she was pregnant with her third child. Lindsay and her husband, John, were excited to welcome this new addition into their family. This time, it would be a little boy they would name David who would join his two older sisters.

A lot was going on in Lindsay’s life at this time. She and John lived in Colorado Springs and were both civil engineers. They were preparing for a big move to Montana with their jobs and would be moving shortly after David’s birth.

“Our plan was to move a few weeks after David was born,” explains Lindsay. “All of my pregnancies had been normal, and David had a great 20-week scan, so we felt comfortable with the timeline.”

In the spring of 2016, as they were all packed up and coordinating their move, David would make his entry into the world just shy of 40 weeks or what would be considered full-term for a healthy pregnancy.

“I had a normal vaginal delivery, his scores looked great and I was able to breastfeed him right away,” remembers Lindsay. “But, about two hours later, he started throwing up something dark brownish- black. The mood changed right away, and he was whisked off to the Neonatal Intensive Care Unit (NICU) immediately. I wasn’t sure what was going on.”

At first, the doctors thought David had swallowed meconium while coming down the birth canal, something very common during a vaginal delivery. But, when David began throwing up all his feeds, the doctors decided to transfer David to Rocky Mountain Hospital for Children in Denver to do some more tests.It was at the Rocky Mountain Hospital where David would be diagnosed with Hirschsprung’s disease. This condition, seen most often in males, is a condition that affects the large intestine (colon) and causes problems with passing stool. The condition is commonly present at birth because of missing nerve cells in the muscles of the baby’s colon.

This condition normally affects only the colon, but in David’s case it affected all of his colon (large intestine) and also nearly all of his small bowel, something referred to as “near total intestinal aganglionosis.” David would go on to have two surgeries at Rocky Mountain Hospital. Unfortunately, his condition was not improving and he still didn’t have a functioning bowel.

At the same time, Lindsay’s job re-location was still in motion, but she and John would be reassigned from Montana to Omaha. This turned out to be a blessing in disguise. What Lindsay would come to learn was that Omaha was home to Children’s Nebraska and surgeons and physicians who were highly specialized in this disease.

“At five weeks old, we transferred David from Colorado to Omaha, and he was in really rough shape,” remembers Lindsay. “While we were moving and driving over to Omaha, David was also being transported and I met Children’s Transport Team when they arrived at the hospital.”

David was extremely sick by this point. His skin was yellowish-orange, and he couldn’t eat anything. He was completely IV-fed and his ostomy wasn’t functioning. His stool was building up in his intestines and they had to suction it out through his mouth. Within two days after their arrival, Lindsay met with the pediatric surgeons at Children’s and David had another surgery.

Within days after the surgery, David started to improve. His ostomy started working for the first time and he was tolerating food going into his body. He was put on Omegaven, a special liquid supplement made up of fish-oil emulsion, that was used particularly in infants with short bowel syndrome.

“I think the biggest thing that I noticed when we came to Children’s was just how different it was from the care that we received before,” remembers Lindsay.  “I noticed the change in attitude and people. Midwestern people are just wholesome and truly caring, and they were so invested in our child and family. It gave us so much peace that we had made the right decision and filled us with a lot of hope, too.”

David would remain in the NICU at Children’s for nine months, where the nurses worked with him to tolerate feeds and continued trying to get the maximum use of the bowel he had left. He had many therapists come in during his time in the NICU to work with him and help him learn and grow.

“The greatest thing about being in the NICU was that we came to know every single doctor, and by the time we left, the nurses became like David’s second mom,” remembers Lindsay. “When you are there for that long, you celebrate milestones there. We spent Thanksgiving and Christmas at Children’s, and the nurses even helped me throw a birthday party for my daughter who was turning 4. We were able to bring her up and have her party near David in the NICU.”

An interesting thing happened while David was in the hospital. When his older sister, Maria, visited one day, Lindsay shared with the nurses about her daughter’s lifelong issue with constipation. It turned out that David’s sister had the same condition as her brother.

“The care team there helped us get her diagnosed and she also had a surgery,” said Lindsay. “So, we had two children at the hospital at once.”

After learning how to tolerate his feeds, David was finally able to go home. He would go home on total parenteral nutrition, also called TPN feeds, which is a solution of essential nutrients including proteins, fluids, electrolytes and fat-soluble vitamins that is given into the veins intravenously.

Today, David is 5 years old and about to start kindergarten. He can run around and play and is a happy little boy. He is now able to eat what he wants but is also on the supplemental feeds to make sure he is getting enough nutrition. Only a small portion of his bowel is working, which means he will keep the ostomy bag throughout his life.

Even though it seems like ages ago now, Lindsay has fond memories of her time in the NICU. She was excited to hear that Children’s will be expanding its NICU capabilities into the new Hubbard Center for Children opening in late August 2021. With the opening of this state-of-the-art facility, Children’s will be expanding to 52 rooms and doubling the current square footage from its current NICU. Rooms will be larger and more comfortable to improve the experience for the entire family.

“Children’s has been beyond capacity for years now, and this service is just so needed at a children’s hospital,” said Lindsay. “The environment at a children’s hospital is unique and so different from a regular adult hospital. That isn’t something I really realized until I got to live in a children’s hospital for nine months. What they are doing with this expansion is really going to improve care for children across this region.”

As an engineer herself, Lindsay was also really interested in the little details that went into the design of the Hubbard Center for Children.

“We met the guy who was doing the tiling on the floor, and we were chatting with him about how long he’s worked at Children’s and it was just really cool so see all the thought that went into every little detail,” said Lindsay. “The playrooms, the colorful artwork, the fun carpeting… everything is so meticulously planned out to be open and full of color and light.”

Lindsay is happy that the Hubbard Center for Children will be there to help other children like David get the life-changing care they need. Through her long journey that started in Colorado and concluded in Nebraska, she truly believes she ended up in the exact right place for David.

“I’m just so grateful to all the nurses and doctors in the NICU,” said Lindsay. “They were truly wonderful and made our time in the NICU a happy memory. They loved us and cared for us, and in turn, we will love and care for them forever.”