Colton Schumacher

Colton is a newly 4 month old baby who has had to fight for life before he was born. Colton's mom endured a complicated pregnancy that included a rare diagnosis of Absent Ductus Venosus and IUGR, a placental abruption, bed rest, and several hospital admissions while trying to keep healthy and growing safely inside of her. After a long and restless 35 weeks, he was born via emergency C-section. Colton continued his fight as he quickly lost his ability to breath and required the life saving drug Serfactant. As the NNP's attempted to give him the medication, Colton stopped breathing on three occasions, causing the skilled professionals to give him the medication in a way that risked it going into his stomach, rather than his lungs. Colton endured, and soon he was able to breath using CPAP, then nasal cannula, then finally on room air. Colton required an NG tube to help him make sure he was able to eat and gain weight- as Colton was always a tiny little guy. Colton was finally able to return home without his NG tube after 30 days in the St. Johns NICU.

Upon return Colton was followed closely by his caring pediatrician and life started to settle down (well, as settled as it can be with kids aged 10, 4, 2 and newborn at home). In August Colton's mom returned back to work at her beloved elementary school where she is a Speech Language Pathologist. At an appointment in early September Colton's pediatrician noticed that his weight was not gaining as nicely as she had hoped, and put in referrals for feeding therapies, as well as GI and ophthalmology referrals. On September 12th after a continued decline Colton was admitted Masonic Children's hospital where he was diagnosed with Failure to Thrive. Colton underwent several blood, x-ray, and video swallow study assessments to try and determine why he was having such difficulty eating and gaining weight. Due to much frustration between Colton's parents and medical team, there was not a clear cause for his difficulty and he was sent home on September 17th with an NG tube and scheduled follow up appointments.

After two days of demonstrating significant pain and difficulty eating, Colton returned to Masonic Children's on September 20th where he was admitted again, this time followed by the GI team. Colton's parents continued to advocate and share concerns, and it was suggested that Colton had a milk-protein intolerance that was causing him pain, and that he was experiencing colic. Three nights into Colton's admission, he demonstrated concerning pain and was taken into an emergency ultrasound of his stomach where they found he had a large gallstone. Colton's care team and his parents continued to have differing opinions as to Colton's pain, and ultimately Colton's mom and dad requested a transfer to Children's Hospital in MPLS in hopes for a second opinion, and a desperate attempt to have more professionals meet Colton and help him.

After 9 hours in the Emergency Department, Colton was admitted in-patient at Children's on September 24th with significant failure to thrive and GI concerns. Children's medical team acted fast and followed up with several procedures to investigate causes for his pain and now disinterest in eating at all. Colton has had an additional stomach ultrasound, blood draws sent to the Mayo clinic, upper GI endoscopy, brain MRI, and ophthalmology consultation. After fast acting, compassionate and collaborative care, Colton is finally acting like a 16 week baby should. To see Colton smile and interact and coo is something he has not done for his parents, which highlights the impacts of the suffering he has had to endure. Colton is currently on strict feeding guidelines with support of NG tube feedings, medications to help dissolve the gallstone, medications to help with reflux and medications to help his stomach relax and expand to intake more food.

It is hopeful that Colton will be discharged in the coming days with support from the Children's hospital follow up teams. His road to recovery includes specialized formula for his significant milk-protein intolerance, feeding therapy to address his food/oral aversion and create positive feeding experiences, and follow up with a GI team to determine if Colton will need a more long-term feeding tube in place. In addition, the hospitalists want to ensure that with Colton's original rare diagnosis in utero, that they are leaving no stone left unturned and have sent bloodwork to the Mayo clinic to determine if any metabolic disorders are at play, and also send blood for further genetic testing to determine if Colton's difficulties are a result of an underlying syndrome.

Colton's parents, Paul and Allie, as well as his siblings Stella, Paisley, and Waylon are all excited to welcome him back home so they can get to all be together again. In these hospital stays the family has been split, with mom at hospital with Colton and dad at home to shuffle the kids to school and daycare and keep the household afloat. Allie and Paul have relied heavily on grandparent and aunt/uncle support to care for Colton's siblings. Allie has taken the remaining of her FMLA from her bedrest to take care of Colton during these hospital stays, but as a family they are determining the ability for Allie to take an extended leave from work to be able to help Colton rehabilitate at home. Any generous donation will be used towards expenses that affect Colton's siblings ability to continue activities that have brought them joy and consistency during these difficult times, including preschool fees for Colton's sister and toward financial expenses that will be more difficult to pay as Allie takes an unpaid leave of absence including payment for COBRA insurance.

Paul, Allie and Colton are so thankful for the many family, friends, coworkers, nurses and doctors who have wished Colton well and have been a part of his care teams. For anyone who is part of the NICU parent club, to watch your baby be readmitted and fight for their life so soon after a NICU stay is not for the faint of heart. It is difficult for Colton's parents to accept the idea that they could need help, but as Colton's medical needs continue to evolve and change, they are learning that it does indeed take a village to raise a child- and they are forever grateful for all of you to be a part of theirs.