“I had gotten so attached to this hospital and everyone here, and my one constant was coming to this place,” Bean said. “We just started making these bags, and it gave me a reason to come back; I felt good about coming back to UAB.

“After you have practically lived in a hospital, you realize there are so many other families who are literally living in waiting rooms, feeling helpless, not wanting to leave their loved one.”

Since 2012, the Bean family has created and donated more than 100 “Bean Bags” to UAB. The bags are full of items they needed during their time in the hospital. It is their way to pay it forward to other families on a similar journey.

“It’s got everything you may need from a comfy pillow and blanket to over-the-counter medicines, basic toiletries and pre-moistened wipes, to quarters to do laundry or get snacks from the vending machine, and even crossword puzzles,” Bean said. “What started as something that we wanted to do to give back has now gotten others in our community involved who want to contribute to the bags, too.”

Bean explained that, while these items seem basic, being able to brush your teeth or use a comfortable pillow can make you feel a little bit better when you are going through a challenging season. Even a simple crossword puzzle can take one’s mind off things for a few moments.

“Many may not realize it, but those additional basic comforts make all the difference in a person’s quality of life when they are in some ways living in a waiting room,” Bean shared. “During those last two weeks of Jeremy’s life, I didn’t want to leave my husband at all, and I benefited from the kind deeds and actions of others. This is how I can help give back.”

While creating “Bean Bags” has been a great way for Bean and her daughters to honor their late husband and father, their mission speaks volumes about finding positive ways to channel grief after the loss of a loved one.

“What healthier response to grief is there and what better way to spread meaning than to help other people and celebrate their person’s life,” said Wendy Walters, clinical ethics consultant at UAB Hospital, about the genesis of the “Bean Bags” and how the Bean family focused their grief. “When you lose somebody you love, you have the opportunity to figure out how to make meaning out of the loss and how to frame it positively. This is what being a part of a healthy society is all about – taking care of each other.”

Now six years after Jeremy’s death, the Bean family still hand-delivers “Bean Bags” stuffed to the brim to families at UAB with the help of Walters, who distributes them to units in the hospital that have a particular need.

The Bean family’s big takeaway? They are lucky to continue Jeremy’s legacy and to help others.

“We want to keep his memory going, and we think he would really like this,” Bean said. “If nothing else, I hope other patients take comfort from the bags and that, whenever they are in a position where they are in a better place, maybe they will want to give back and pay it forward.”

(Courtesy of Alabama NewsCenter)

He was immediately admitted to UAB’s Regional Neonatal Intensive Care Unit, the only Level IV NICU in Alabama, while his mother – a physician herself – watched.

“It was surreal because, as a doctor, I knew what every beep of the monitor meant. I knew all too well what his labs and vitals indicated, and I knew what the risks were. I couldn’t turn it off,” Congress said. “I just remember praying to be his mom and not a doctor. I am a doctor to thousands, but I am a mother to just this boy – this is my job.”

According to March of Dimes, 380,000 babies are born prematurely – or born before 37 weeks’ gestation – in the United States each year, with complications from premature birth serving as the No. 1 cause of death of babies in our country. November is Prematurity Awareness Month, helping to spotlight the serious health problem that is prematurity and how it impacts the health of babies born too soon.

Langston spent 152 days in UAB’s RNICU, while Congress balanced the ups and downs of understanding what being a NICU parent meant, including the physical changes her body was experiencing post-birth as she was nursing, as well as the emotional rollercoaster associated with not bringing her baby home from the hospital as planned.

For NICU parents, the uncertainties and sense of unfamiliarity can be trying. During a time when parents end up spending uncertain periods of time in the RNICU and/or Continuing Care Nursery, the team at UAB aims to try to provide a sense of normalcy and individualized care to help the family through their journey.

“Having a preterm baby is a huge surprise to most families, and my job is to support them as they navigate a journey most never anticipate. No one puts premature birth or the NICU in their birth plan,” said Sandra Milstead, family nurse liaison in UAB’s RNICU and CCN. “They go through a time of shock and then begin to settle into a foreign place that will be their home for days, weeks – sometimes for months. It’s a trying time for these families, and we aim to help them by providing the best care for the baby and his or her family, as well as providing opportunities to make special moments and memories.”

Langston is now a healthy, vibrant, energetic 2-year-old, and Congress looks back on his time in the NICU as a part of their unique journey, blogging about how her family navigates life after the NICU on her blog, Miracles and Milestones, with the hope of providing support and guidance for other NICU parents; she has even written a book – “Miracles and  Milestones” – with the same purpose.

“Even on good days it can be hard to breathe, as it is easy to feel hopeless when you can’t directly care for your baby,” Congress said. “My hope is that our story can help others who are in the same position know about the struggles, joys and victories of parenting a premature baby.”

(Courtesy of Alabama NewsCenter)

“The first time I saw Thomas, he was in a wagon looking a little shy,” Stroupe said. “I went over and he hopped out, and we started passing the ball around. From there, it kicked off and we hit it off.”

Thomas has pandisacharidase deficiency, a genetic disorder marked by the body’s inability to produce the enzymes needed to break down complex sugars into simple ones. It causes severe stomach pain. Thomas also has primary ciliary dyskinesia, another genetic disorder that leaves him unable to clear his lungs; it can turn a simple cough or cold into an upper respiratory disease or pneumonia.

“Thomas was hospitalized last fall at Children’s for about a week because of some stomach problems,” said his father, Chris Mackley. “I just so happened to see a flier for a soccer event, so we took it upon ourselves to come.”

Mackley noted that Thomas has had trouble making friends and that he was not in good health at the time. Fortunately, that did not hold Thomas back from making an instant connection with Stroupe.

The initial meeting between Stroupe and Thomas was on a Saturday, and by the following Monday, Thomas and his family were in the stands to cheer on the Blazers against Missouri State. The game was motivation for Thomas to get well enough to attend. It encouraged him to eat and drink more and built his confidence.

“The first game I saw him, I wasn’t expecting him to be there,” Stroupe said. “But sure enough, it was him and that pumped me up. After the game, I was able to bring him on the field and pass the ball around. After that, it never stopped.”

The new connection brought the Mackley family to the Blazers’ seven remaining home games, where once again, Thomas found himself on the field surrounded by the entire team.

“At first, it was kind of weird because we were wondering why college kids would want to hang out with a 3-year-old,” said his mother, Ashly Mackley. “It was cool to see them want to play with him, and to have them accept Thomas as one of their own was awesome. The best way to describe it is that Chandler and Thomas have sort of become brothers.”

Thomas was in the stands to see Stroupe play his final game for UAB, but the bond and friendship did not end after the last game. The unlikely best friends have continued their relationship, going trick-or-treating together and meeting up whenever Thomas is in town for doctor appointments. Stroupe has even traveled to the Mackleys’ home in Oxford for a night of wrestling and Xbox matches.

“It’s hard going in the hospital and seeing these kids at such young ages in the situations that they’re in and what they have to deal with so early on in life,” Stroupe said. “But seeing Thomas’ positive outlook and every time I saw him running and jumping into my arms, always having a smile on his face, it was really cool to see.”

(Courtesy of Alabama NewsCenter)