A Newfound Family in a Second Home

February 28, 2019

Ariel's family leaving for home

In the fall of 2016, Tania and Jose were expecting their third child. Living in Laredo, Texas, their happy family of four, with sons Jose, Jr. and Gael, was excited to welcome another boy into their lives, as were Tania and Jose’s parents and siblings. The whole family is close, and Tania has always been able to depend on them when she needed to most. She just didn’t know how much she would need them over the next couple of years.

We need to go to Nebraska.

Tania’s pregnancy wasn’t out of the ordinary, but shortly after Ariel was born, his condition changed, and he needed to be whisked away to the NICU. On his second day of life, Ariel needed surgery and would need to be transferred to a children’s hospital more than two hours away, in Corpus Christi, to receive it. The hospital arranged for a medical helicopter to transport the family. Tania had been instructed by doctors to rest and regain strength, as she had been running a fever of her own after giving birth, but for her that wasn’t an option.

“I couldn’t do that.”

It may have been against doctors’ orders, but there was no way Tania was going to stay in her bed while her newborn baby and husband flew to another hospital. She signed her discharge papers and called her brother to ask for a ride. Despite it being around 1:00am, he agreed, because that’s what family does.

When they arrived in Corpus Christi, Ariel was being prepped for surgery. During the procedure, doctors found significant damage to his intestines, which required the removal of part of Ariel’s small bowel, and the installation of a colostomy. 

Tania had given birth less than 48 hours earlier, but she doesn’t remember feeling any physical pain. She was too worried to hurt. She says, “I couldn’t sleep. I didn’t know what was gonna happen. I didn’t know how to handle it.”

Despite that initial surgery going as well as could be expected, Ariel was not out of the woods just yet. His kidney function was down, causing the doctors to place a stint on one of the kidneys. Unfortunately, an infection forced them to remove the stint and connect a tube (known as a nephrostomy) to his left kidney. Ariel also had yet another issue with his intestines, resulting in another ostomy being placed to assist with his digestive system.  Because he wasn’t able to receive nutrition orally, he had to have a gastrostomy tube (g-tube) installed. He was still just two months old.

To say those first couple of months were difficult would be quite the understatement. Tania was living in some hospital lodging, and while there were a few other parents there to talk to, the stress still paid a toll. As a naturally quiet and introverted person, Tania struggled with expressing herself, instead internalizing all of the chaos surrounding her. “I wasn’t taking care of myself. I was crying all the time because he was so unstable and we never knew what was going to happen.” To help out, Tania’s mother stayed with her for that first month, providing whatever comfort she could.

Eventually, Tania felt strong enough to suggest her mom go back to Laredo, where she could help take care of the older boys. With Jose working on the road so often, Tania knew they needed her mom more than she did. She started coming out of her shell, opening up to the other parents in the NICU, and those parents soon became close friends. They may not have been family, but the support they provided was invaluable.

You don’t feel so alone. Parents like us are the only people who can feel what you’re feeling.

As Tania did her best to adjust to the uncertain turn her life had taken, Ariel’s condition remained unstable.

In addition to the intestinal issues Ariel faced, his liver was doing poorly, and a scan indicated he had biliary atresia. After an evaluation, it became clear that Ariel would need a transplant, likely of his liver and small bowel, to save his life. And the closest transplant center capable of handling a multi-organ transplant was located in Omaha, Nebraska.

Before they could move Ariel to Nebraska, he had to have his colostomy and nephrostomy removed, which would take a couple of months. Back in Corpus Christi, Ariel was rolled in to the operating room to remove the nephrostomy. Beyond the benefit to Ariel, Tania was ecstatic because the long tubes made it terribly difficult to hold her baby. The surgery took two or three hours longer than the parents expected, and when the surgeon came to the waiting room, he had some troubling news. The kidney had suffered too much damage, and it had to be removed completely.

“We were in shock. We stayed there with the doctor for like 30 minutes because I couldn’t get it. He went in there to fix his kidney and he ended up removing it.”

Ariel wearing a Superman shirtTania eventually understood that there was nothing that could have been done, and even though Ariel could live with the one working kidney, it was yet another bump in this already bumpy journey.

A month later, Ariel had his colostomy removed, and things were looking up. He was gaining weight, and for a brief period, it seemed like a transplant may not be necessary. Unfortunately, Ariel developed another infection. His liver was in bad shape, and he was no longer able to tolerate his tube feeds. Tania knew it was time. “We need to go to Nebraska.”

When Ariel was seven months old, he and Tania got in a medical airplane and traveled more than 1,000 miles to Omaha. Tania has a habit of rubbing her hands together when she’s nervous, and she says she did that basically from the time they left Corpus Christi until they met with Ariel’s new doctors. She had spent the last seven months wondering what was about to happen, and now she was on her way to a place she had never visited, to meet a new medical care team, and hopefully find some answers.

Upon arrival to Omaha, there were no rooms available in the Ronald McDonald House, so Tania stayed in the hospital room on the pediatric floor with Ariel. There, she slept restlessly, lying on the small couch or sitting in the chair at Ariel’s bedside, until receiving an update from the hospital social worker a couple of days later: a room in the House had become available.

Tania hadn’t stayed in a Ronald McDonald House before, but she was greatly looking forward to experiencing a home-like environment. For the previous seven months, all she knew was the hospital life, complete with smaller rooms and a steady diet of cafeteria food.

She says when she got the call from the social worker, “I was still nervous because I just get nervous with everything.” But when she walked in the door and met Tina, the Director of Operations, Tania immediately felt comfortable. After seeing the kitchen and learning about the volunteer groups who make dinner, Tina handed Tania a welcome bag, complete with a blanket, toiletries, a stuffed animal for Ariel, and other comforting items. She says, “The welcome bag made me feel so good.” Tania adds that it’s those small things that gave her confidence that she could rely on someone here when she’s having a bad day.

A week and a half later, Tania received some more great news. Ariel was set to be discharged from the hospital, and he could join her at the House. The only concern: Tania would now be handling Ariel’s tube feeds, dressing changes, and all of his care. She says, “It’s hard changing dressings and tubes on your child. He’s crying the whole time, and I was really scared.”

Thankfully, Tania wasn’t the only parent here who needed to take care of those things.

“I remember one time it was my first time doing [Ariel’s] TPN (total parenteral nutrition), and the TPN machine was just beeping and beeping and beeping. I was in the kitchen and I couldn’t fix it because I didn’t know what was going on with it. I was so new and I didn’t know anybody from here, and Victoria (another mom in the House) told me how to fix it. I was so relieved. I thought I was going to have to go to the hospital and get him admitted all because I didn’t know how to fix the TPN machine.”

Beyond the physical support, Tania says it’s been crucial to be surrounded by parents who truly understand what she’s going through. “You don’t feel so alone. Parents like us are the only people who can feel what you’re feeling.”

She adds that she’s grown very close to many of the moms she’s met here. They celebrate each other’s good days, and console each other on the bad days. It’s like having a second family.

Whenever I come up here, I always tell my family in Laredo, ‘I’m going to my second home.’

Their first stay in Omaha lasted a few months, but Ariel’s condition has required multiple trips back, including a pair of visits in 2018. One such trip turned out to be quite eventful.

Ariel had been placed on the transplant list for a new liver in the fall of 2018 – on Tania’s birthday – and shortly after his second birthday, he was battling yet another illness. Tania made an appointment for him in Omaha on November 28, hoping that they would have a room in the House, and also hoping for some news regarding the transplant. Ariel sitting on a bed with a basket of goodies

The whole family loaded up into their SUV on November 26 to make the 18-hour drive, and after a few hours, they stopped for fuel and food outside of Austin. While there, Tania received two encouraging phone calls from the hospital: one from their social worker, and another from a nurse coordinator from Ariel’s care team. Not only were they informed that the family would have a room at the House, but more remarkably, Ariel was going to receive his transplant. The organ was waiting for him at the hospital. The family was shocked. “I couldn’t believe it. We had packed everything, just wanting to stay here until he had a donor, and we got the call on the drive up.”

As the family was still a day’s drive away from Omaha, and too far from home to go back for transport, Jose drove them to their new destination in Austin, where the nurse coordinator had made arrangements for Tania and Ariel to board a medical plane.

It was almost 9:00 pm when they arrived in Omaha. As it turned out, the operation wouldn’t take place until the next morning, which gave Jose and the rest of the family enough time – after driving all night – to join Tania before Ariel went into the operating room. It was a relief to have her whole family there for that experience.

After nearly six hours, Ariel had a new liver.

The journey since the transplant has been far from easy, as Ariel has undergone multiple biopsies and spent many days in the pediatric ICU. At one point, an internal bleed dropped his blood pressure so precipitously that his room filled with nurses and doctors, all rushing to stabilize him. Tania and Jose were both there, unsure what was happening. Tania says, “I was just in shock because he was fine, and then the next minute he was asleep and felt so cold.” Tears filled Jose’s eyes as he watched doctors administer medications and fluids to bring Ariel back from the brink. Thankfully, his condition did stabilize, and the doctors eventually fixed the bleed.

Through all the ups and downs, Tania and her family have felt the love and encouragement of everyone at the House, including supporters from the Omaha community. One example of this was during Christmas last year. Each year, families and businesses around the metro Adopt-a-Family in our House, bringing Christmas gifts for everyone spending the holidays away from home. Assuming it would be a few small things, Tania and her boys walked down to the entry to the House, eyes lighting up at the sight that fell before them. The entryway was covered with gifts, all purchased and wrapped by some complete strangers with big hearts. “It was overwhelming,” she recalls. “I was just so happy to see my boys so happy.”

She’s also been happy to have her husband be around for much of this journey. Despite having a job that demands significant amount of time on the road, Jose has still carved out plenty of time to spend in Omaha, with Ariel, Tania, and their two older sons, when possible. His wife treasures their time together, and she loves that he’s been there for some significant milestones in their son’s life. Both of them heard him say his first words. They both saw him take his first steps. They celebrate every accomplishment, no matter how small it may seem.

Tania appreciates having a place where she can just relax and destress, whether she’s in her room by herself, or watching a movie with her family in the living room. Those everyday activities bring some semblance of a normal life, even if their normal life looks more abnormal to the uninitiated. Any chance to have quality time as a family is cherished, and that goes for the quality time with her second family, as well.

Help a family like Ariel’s find some normalcy in our House by making a gift today.