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David

David’s Story: A Journey through Two States
and a 9-Month NICU Stay

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.”

David NICU

David NICU

David NICU

Cooper

How I Dealt With The End Of My Own Innocence When My Little Boy Had Leukemia

By Jenni DeWitt

“We need to raise money for the sick kids. The scientists are trying to make them feel better,” I said to my young boys, trying to explain their daycare’s childhood cancer fundraiser to them.

Cancer wasn’t something I worried about with my kids. Our family didn’t get cancer, at least not since my great-great-grandma had that tumor. I sure felt bad for those poor families who had to worry about it, and I couldn’t imagine how hard it must be for them. But childhood cancer wasn’t something that impacted my life.

Then, 4 months later, my son Cooper was diagnosed with acute lymphoblastic leukemia. Without warning, our family suddenly did get cancer. My son was the “sick kid” and we were the “poor family” who had to deal with this terrifying disease.

News That Makes You Numb

It was the end of my own innocence in thinking that kind of thing couldn’t happen to me … or, at least, it should have been. But everyone reacts differently to tragic news, and my defense mechanism was denial.

Surely, they got it wrong, I thought. I’d heard about cases where it looked like cancer at first and then it turned out to be something else entirely, like a strange virus that passed quickly. That’s probably what it was, I told myself.

So that first night in the hospital, I was the reasonable one talking to the doctors about our next steps. I was the one who kept it together so my husband could go through all the treacherous emotions you feel when someone puts your child’s name and “cancer” in the same sentence.

I was holding on desperately to my delusion that this couldn’t happen to us. In my mind, it was only a matter of time before the doctors would realize they were wrong. This wasn’t actually cancer.

The Shattering Reality Of Leukemia

One test after another came back confirming a cancer diagnosis. Each test was like an ice pick, chipping away at my delusion.

As we stood in front of an elevator, waiting to be whisked away with my son to yet another procedure one day, my husband turned to me and said, “Why aren’t you crying? You haven’t cried.”

Time stood still as I looked at him in confusion. We both knew I was the over-reacting, emotional person in the relationship. He was right … why hadn’t I cried? I didn’t know why at the time.

But a few weeks later, as my husband was starting to come to terms with that first wave of incomprehensible emotion, I ran out of lies to tell myself. In a flood of tears, I held my son, who was in so much pain he couldn’t get comfortable, and I bawled my eyes out.

He had cancer. This was our life. It could happen to us. It did happen to us.

From Denial To Acceptance

This was our life now, and nothing would ever be normal again. Even if Cooper got better, it would never be the same. I lamented all the things I’d taken for granted before, as I mourned the loss of our old life.

We were no longer ourselves. Now we were those people you saw on the flyers that hospitals send out. The ones with the bald kids and the tired, sad-looking parents. That was us now. The cancer family.

Somehow, through the tears, that first day of realization passed, and we made it through the tests, agony, fear, and anxiety of the next day and the next. Every day we kept plodding along, and I started to realize something I hadn’t before.

There’s more to those “poor families” than tired smiles and bald babies.

“Every day, we were discovering how strong we were. We were realizing how amazing our child was as he giggled and gave us radiant smiles, even in the midst of his sickness. And we were learning to see the joy in life — to embrace the moment we were in — and be grateful for it.”

—Jenni DeWitt, mom of pediatric cancer survivor

It was painful to be the “poor family” with the “sick kid,” but we were starting to discover that, in sharing that pain together, we were also sharing in the joy of blessed moments.

Letting Pain Bring You To A Point Of Grace

I started to understand that being one of “them” wasn’t that much different after all, because we’re all in this world where pain and sadness are touched by joy and love all the time.

It’s been five years since “they” switched to “us” and we became a cancer family. We still raise money for childhood cancer research, but now, when we teach our kids about it, the people we’re helping aren’t somehow outside of us and our life.

They are a part of who we are. They are our friends and neighbors. They are one of us.

Because now we know the truth. When you share in someone’s sadness, you also share in their joy.

Dylan & Levi

Heart Mom: My Hope For My Twins With Congenital Heart Defects

By Jamie Woods

A Surprising Pregnancy

When my husband and I found out we were having twins, it was a complete surprise. And most of my pregnancy was great. All of the prenatal appointments were fine and there were no real issues — until I went for my 32-week checkup at my local hospital in Lincoln.

At that appointment, there was some concern with the size of the twins. The doctors thought their growth wasn’t normal, and they suggested I see a high-risk pregnancy specialist.

I went to the specialist that same day. At that point, the medical team could tell that the smaller baby was having some heart issues, but they weren’t sure exactly what those issues were.

Just in case the twins had to be delivered early, the doctor gave me steroid shots to speed up their lung development, and I was put on hospital bedrest.

A few days later, an ultrasound showed that both boys were under stress. The medical team recommended an early delivery, so Levi and Dylan were born at 32 weeks.

They were both taken off to the neonatal intensive care unit (NICU) right away. I didn’t think much of it at first. I knew that might happen because they were born early. But after several hours had passed, I began to worry that something was wrong.

Then a cardiologist came in and told Zach and me that both boys had congenital heart defects. The doctors weren’t sure exactly what the extent of the defects was. They decided to send us to Children’s Nebraska in Omaha. The boys were only a few hours old.

Mending My Boys’ Hearts

At Children’s, both boys were diagnosed with pulmonary atresia: Their pulmonary valves were closed at birth when they should have been open so that blood could pump to the lungs. This is not something that can typically be detected using an ultrasound, which is why prenatal diagnosis would have been difficult.

That’s when we found out that the boys would need surgery in the next few days to correct their congenital heart defects.

Levi had the surgery first, at 3 days old. He was only 4 pounds. Because he was so small, the medical team had to do a hybrid surgery that was somewhere between a balloon catheterization and open-heart surgery. Fortunately, the procedure went pretty well and he did not have to be put on the bypass machine.

But Dylan was even smaller than Levi — only 3 pounds, 6 ounces. And he had a bleed on his brain that had to clear up before he could have the surgery. It was an extremely scary time, but, fortunately, the bleed cleared up on its own and he had his surgery when he was 7 days old.

Dylan’s surgery was more complicated because he also had another heart defect: coarctation, or narrowing, of his aorta — the big blood vessel that carries blood from the heart to the rest of the body. The surgery took 7 or 8 hours, and he had to be put on the bypass machine throughout it.

Going Home

The twins spent the first 64 days of life in the NICU. On Valentine’s Day of 2012, we all got to go home.

After we were all settled in at home, the twins just needed regular checkups with their cardiology team at Children’s. Both boys seemed stable. Neither was getting worse.

But Levi continued to have low blood oxygen saturation numbers, which basically meant he didn’t have enough oxygen in his blood. His skin had some blueness to it.

We knew he would eventually need a second surgery to correct this, and we decided with his medical team to go forward with the procedure in September 2014, when he was 2 years old.

Levi’s second surgery was a success. Both boys are in preschool now and doing well. They’re learning to ride bikes, playing outside with their friends, and doing things just like other kids their age.

Also watch: Dylan and Levi’s Story

My Biggest Hope For My Twins With Congenital Heart Defects

The boys go to Children’s yearly to check their progress. It’s very likely they’ll have to have additional surgeries in the future. But for now, things are going great.

My greatest hope — and I think my husband, Zach, would echo this, too — is for the boys to continue to be able to just be kids. We want them to do things other boys their age do as they grow up.

That’s the number one hope for us, one that many parents want for their children: that they will continue to be able to feel and act and grow up as normally as possible. For us, that will mean a fun holiday season, a happy New Year, and a great future for them.

Conner

Connor’s OI Doesn’t Stop Him From Living Life

His name is reminiscent of a fairy tale character – and rightly so. Conner Goldhammer’s story has the necessary elements: a beaming young hero, a daunting challenge, and lessons that, in the end, we can all learn from.

“He loves playing with his cars and trucks, being outdoors, swinging and blowing bubbles,” says mother Denise Goldhammer. “In many ways, Conner is your typical 3-year-old.”

And, in many ways, he is not. Conner was born in July 2010 with Osteogenesis Imperfecta (OI) Type III, a severe form of the genetic bone disorder known as “brittle bone disease.” He has had more than 80 breaks so far, including multiple skull fractures after a tumble in early 2014.

“We felt lost in the beginning of our journey. Conner was so fragile we would have to hold him on a pillow,” recalls Denise who lives in Fort Mill, SC, with her husband and their five children. “Having a child with a life-altering illness not only effects the child but the entire family. We were searching for answers – and we didn’t feel like we were getting the care in Fort Mill that Conner needed.”

She explains, “One doctor suggested rodding Conner but not until he turned seven. I wouldn’t accept this. Conner’s legs were bowed at a 90-degree angle so you could image that every time he stretched, his femur would break. Or, if he caught his leg on one of our shirts, his tibia would break. We switched to another local doctor who had more OI experience but just wasn’t comfortable performing the surgery to place rods. Conner would have been his youngest and smallest OI Child.”

Through their connection to an OI parents Facebook group, the Goldhammers learned about the Metabolic Bone and Osteogenesis Imperfecta Clinic at Children’s Nebraska 1150 miles away.

“We made the decision to fly to Children’s and meet the team of OI specialists. It’s the best decision we ever made,” Denise says. “When we went to Children’s, it was a sigh of relief. We felt like we were getting our answers and our lives back on track.”

Six months after that initial visit, Dr. Richard Lutz and Dr. Eric Rush also have had a huge role in this with Conner’s infusion dosing. They’ve listened, and we have worked together to make a plan of care.”

The family continues to travel to Omaha at least twice a year to see the OI team for clinics and surgeries. (Conner has had at least six surgeries at Children’s since he was 17 months old.)

Conner Goldhammer has limitations to be sure: he requires constant monitoring and cannot walk (let alone run around with his brother and sisters like he wants to) – but, says Denise, “he scoots and does his best to keep up.” And that is the lesson here – even the most fragile among us can have an unbreakable spirit. Check his Facebook page, Conner’s Care, and you will be greeted by a vibrant child with a ready smile.

“He is a very smart kid. He remembers everything and listens and will have conversations with you,” Denise says. “He is very social and outgoing. His OI doesn’t stop him from living life.”

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