Giving News & Highlights
- Published on Tuesday, 03 June 2014 08:27
- Written by Emily Dobesh
If there is one common thread that unifies many of the heart families I know, it’s that we can all clearly identify that moment in our lives when absolutely everything changed. For most of us, it is a moment seared into our memories that we can definitively point to and say, “There; that is when my life became something I never thought it would be.”
Along our family’s heart journey so far – which has included three open heart surgeries, two heart catheterizations and countless doctor’s appointments – we have had many pivotal moments. But no date has ever more clearly marked an ending and a new beginning for us than February 10, 2010.
We arrived for our Level II ultrasound in high spirits that day. I remember it was a very cold but sunny day. I ate a bagel in the waiting room, chatting with my husband, Grant, about potential baby names and plans for the nursery. Those are my last memories of my life “before.”
Alison, Ben and Sam's mom
We've come to learn that our story from that point on unfolded the way it has for many others in our situation – casual banter with the doctor that gave way to an awkward silence and a long assessment of a little heart that didn't look quite right. They finally told us that they believed our twin Baby B had a serious and rare heart defect called Hypoplastic Left Heart Syndrome (HLHS). With this defect, a number of issues cause the left ventricle of the heart to be underdeveloped. This condition is generally not lethal in utero, as the baby gets all of his oxygenated blood via the placenta. The problems start after birth when the heart becomes singularly responsible for pumping oxygenated blood to the body. Without surgical intervention, this disease is lethal, generally within the first month of life. We endured the rest of our appointment in a total daze before returning home and beginning to research everything we could about our baby's condition.
Everything I remember about the first days of our “after” is rooted in how overwhelmed and terrified we were by what we found on the Internet. We tried to find what current and hopeful information we could about how best to prepare for a baby who would have the significant needs that ours would. Only one common message emerged from all of the research – it matters where you decide to take your child for surgery. And surgery is only part of it – mile one of the marathon, as it were. Before, during, and after surgery, you want to make sure your child is in the very best hands, ones that are experienced, proven, and able to handle any number of surgical and post-surgical issues. We decided we were ultimately looking for a hospital that not only handled a large volume of complex pediatric cardiovascular surgical cases, but also had the best post-operative setting.
After consultations with two top East Cost children’s hospitals, our choice was clear – we wanted Ben to be cared for close to home, at Children’s Hospitals and Clinics of Minnesota.
What ultimately made the decision for us was the foundational trust and respect we built with the providers at Children’s right from the start. The Children’s Heart Clinic and Children’s NICU teams were generous with their time, gave us tours of the state-of-the-art Cardiovascular Care Center (CVCC) and NICU, helped us build our birth plan, and provided insights about what commonly happens during hospitalization following surgery. They were responsive to all of our questions, and dug into finding the right answers for us. Children’s integrated network of providers ultimately empowered our family in a situation where we felt like virtually everything was out of control – we knew we would have the tools and support to provide for our son’s needs.
Ben has had all of his procedures and follow-up care at Children’s, and Grant and I often remark that the focus on total family care is what has enabled our family to emerge from each experience successfully. This will be a lifelong road for us to navigate due to the complexity of Ben’s condition. But, ever since his final planned surgery last May, our focus has happily been on giving Ben and his brother, Sam, as “ordinary” a life as possible despite the extraordinary circumstances into which they were born. Although there are many unknowns that lie ahead of us in our unexpected detour in this life, our amazing partners at Children’s have given us the resources and confidence we need to remain positive and hopeful in our roles as parents and advocates for both our sons.
Ben and Sam's photo shoot
If you would like to support Children’s and families like Ben’s, you can make a one-time donation or a monthly donation to help all year long. Your support will provide services like the Ronald McDonald House, which allowed Ben’s family to spend time together as a family for an entire weekend; the Child Life experts, who helped Ben and Sam understand what was happening to Ben's heart; and the Family Resource Center that assisted Alison and Grant in finding out more about what was happening to their son.
- Published on Thursday, 29 May 2014 07:34
- Written by Emily Dobesh
Children’s invites you to gather your friends and family to join us for one of our most inspiring events of the year. The Baby Steps 3K Walk and Party takes place on Saturday, May 31. More than 1,600 people are expected to walk in support of the neonatal program. This special event honors and celebrates our littlest patients, providing an opportunity for families to give back.
Andrea and Matt Sanders were one of the families who participated in the first Baby Steps event, which took place in 2011. Inspired by the care that they received at Children’s, they have joined us every year since then. Their team, Ryan’s Racing Crew, now includes up to 90 friends and family.
They formed the team in honor of their son, Ryan, who was born on August 25, 2010. Two days after birth, Ryan began experiencing seizures. The family was sent to Children’s, where they would stay for four weeks while Ryan received care. At nine pounds, Ryan got a lot of attention from staff.
“There weren’t a lot of babies his size in the NICU,” Andrea says. “But we quickly learned that the program treats more than just preemies. We can’t say enough about the care we received.”
With primary care nurses closely involved in Ryan’s care, the NICU became a home away from home for the Sanders family. And when things felt scary and chaotic, Andrea and Matt leaned on their nurses, talking through their fears.
The staff was there for the entire family, including older son, Mason. They worked to make their stay feel normal in spite of the circumstances.
Ryan’s underlying condition is unknown, and he continues to receive care at Children’s. The Sanders choose to participate in Baby Steps because it is important to them to support the program. “Our family and friends love to come out and help the cause,” Andrea says.
Through their support and the support of others, they will continue to help not only advance the program, but provide all the things that made their own experience a little easier.
- Published on Tuesday, 11 March 2014 10:27
- Written by Emily Dobesh
Megan was a spunky girl from the day she was born. Every day was full of activity! She loved riding horses, 4-wheeling, farming, hunting, sewing and scrapbooking. She had a great love for animals and dreamed of becoming a vet!
At age 13, Megan was diagnosed with acute lymphoblastic leukemia. Megan was treated at Children’s Hospitals and Clinics of Minnesota for over two years. Sadly, we lost Megan to leukemia in November of 2007, when she was just 16 years old.
In 2010, our family founded the Go for the Gold Association to honor Megan’s memory and spread awareness about pediatric cancer. The Go for the Gold Association organizes events that incorporate some of Megan’s favorite activities—like sewing mittens and pillowcases! Through a variety of annual community fundraisers and volunteer events in our hometown of Mora, MN, we raise money for the Cancer Kids Fund at Children’s.
Through our craft sales, 5Ks, community garage sales, and volunteer events the Go for the Gold Association has raised over $48,000 for pediatric cancer research at Children’s! Our family appreciates the care Megan’s received at Children’s and love to share her story.
To learn more about the Go for the Gold Association, visit their Facebook page.
- Published on Monday, 07 April 2014 13:27
- Written by Emily Dobesh
Colin was born Aug. 3, 2013, 16 weeks before his Nov. 27 due date, and weighed a tiny 1 pound, 1.5 ounces. By the time he was two weeks old, Colin already had undergone heart and bowel surgeries within 12 hours of each other.
It was a whirlwind of emotions for Colin’s parents, Jessica and Jerrod, who were figuring out how to navigate life with a baby in the hospital in Minneapolis and two other children at home in Wisconsin.
“The hardest part was keeping as strong as our little boy has been,” Jessica said.
On Thanksgiving, the day after his due date, Colin already had spent 117 days in the NICU and had multiple surgeries. While it was a busy and stressful time for their family, Jessica and Jerrod took comfort in knowing their son was receiving the best care possible at Children’s. Colin’s family even was able to check on him 24/7 with the assistance of a NicView camera, which allowed the family to watch streamed, live footage from a camera in Colin’s crib at the hospital.
Weighing 6 pounds, 10 ounces and having spent 139 days in the NICU, nearly 20 weeks since he was born, Colin was able to go home Dec. 20.
Colin at his photo shoot
There was a lot of planning that had to be done before Colin could leave Children’s. With the help of Children’s staff, Jessica and Jerrod felt prepared to care for their third child, which would have different challenges from the other two. As part of Children’s family-centered approach to caregiving, Colin’s parents were able to change diapers, facilitate feeds and comfort their son while at the hospital. This not only helped Colin and his parents feel more connected, but also provided Jessica and Jerrod with the skills to bring him home to complete their family.
The best part of Colin being home is they finally can be a family. Jessica and Jerrod experienced 4½ months of juggling spending time with Colin in the hospital and spending time with their 2- and 4-year-old children at home.
“My husband and I dreamed for 4½ months what it would be like to be a family of five, and it is amazing,” Jessica said. “We love our family and feel so blessed to be together!”
Colin now is more than 7 months old. His favorite things are eating, sleeping, sucking on his hands and fingers, and being entertained by his brother and sister.
As great as he’s doing, Colin still isn’t done with his time at Children’s. Jessica and Jerrod are doing everything they can to keep Colin safe and free from illness. Colin has frequent eye-exam visits (three exams in the past two months) for his retinopathy of prematurity (ROP), a common eye disorder in premature births. Over the past few months, Colin has received in-home nurse visits, weekly occupational therapy visits and ear, nose and throat visits. He also visits his primary care provider to get weighed, receive vaccinations and check overall well-being.
On March 13, Colin checked in to Children’s – Minneapolis for surgery. Colin had a bronchoscopy to check his vocal cords and airway, laser eye surgery to stop the progression of ROP and an incisional hernia repair to fix a hernia by one of his stoma incision sites. He had three doctors working on him that day.
During the surgery, the doctors found a paralyzed left vocal cord, a partially paralyzed right vocal cord and narrowing of his airway below his cords. After the surgery, Colin stayed a Children’s for a bit so doctors and nurses could keep an eye on him. He will need to come back for a second bronchoscopy in three months to check on his vocal cords and airway.
“Although Colin's birth and first few months of life were very traumatic and stressful, I still think of Children's on a good note,” Jessica said. “They helped sustain his life when he had very little chance in this outside world because he was born so prematurely. The hardest moments of my life happened at Children's, but they also helped give me one of the greatest gifts – Colin. I will never forget our time at Children’s and can’t wait until we can give back to all the great resources that we used extensively. Colin is a miracle, and we couldn't have done it without our faith, love and the amazing care our son received at Children's hospital.”
If you would like to support Children’s and families like Colin’s, you can make a one-time donation or a monthly donation to help all year long. Your support will provide services like the Ronald McDonald House, which allowed Colin’s family to spend time together as a family for an entire weekend; the sibling play area, where Colin’s siblings, Aiden and Bella, were able to spend time when their parents were taking care of Colin; and the Family Resource Center that assisted Jessica and Jerrod in finding out more about what was happening to their baby.
- Published on Tuesday, 14 January 2014 15:14
- Written by Allison Bauman
Three years ago, Famous Dave’s decided they wanted to give back to Children’s in a big way. So they started the Wilbur Cares Party, hosted by the Famous Dave’s Jazz Club in Calhoun Square.
Proceeds from the party have contributed to their pledge of $50,000 to fund a private patient room in the newly opened Karen and George Benz Family Pediatric Neuroscience Center. The center brings Children’s expertise together under one roof so that kids with brain injuries and other neurological illnesses can benefit from the seamless and integrated care needed to treat these complex disorders. And private patient rooms allow families to stay close during their child’s stay, and bring the comforts of home to the hospital setting.
Famous Dave’s also makes a commitment to visit Children’s throughout the year, which includes serving a special, themed lunch to patients and families twice a year, volunteering at the Ronald McDonald House located in Children’s – Minneapolis, and hosting a holiday toy drive at their Twin Cities metro area locations.
We are so grateful for their long-standing commitment to supporting our patients and their families. Since partnering with Children’s, Famous Dave’s has donated more than $63,000 to Children’s in cash and in-kind donations.
The 2014 Wilbur Cares Party will take place on Saturday, Jan. 25, starting at 5:00 p.m. With live music, a silent auction, BBQ, and Paul Fletcher from Cities 97 as emcee, it promises to be a fun night. We hope to see you there! Register for the event today.