By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
Maverick is just 7 months old, but he already celebrated his first graduation a few days ago.
The little guy rolled out of the NICU at Riley Hospital for Children to the strains of “Pomp and Circumstance” playing in the background. It was his first-ever trip outside the hospital.
And he was headed for home.
Sporting a tiny T-shirt that read, “Peace out, Riley. I’m moving in with my parents,” Maverick marveled at all the attention he received from staff as he made his grand exit with his mom and dad, Brianna and Sean Presnell.
Brianna had planned to deliver their son in Terre Haute, closer to their Brazil home, but a 20-week ultrasound revealed that Maverick had a congenital diaphragmatic hernia, a hole in the diaphragm (the large muscle that separates the chest from the abdomen).
Organs in the abdomen (such as intestines, stomach and liver) can move through the hole in the diaphragm and upward into a baby's chest, compromising the lungs.
The serious birth defect meant that Maverick would be born in Riley’s Maternity Tower just after Mother’s Day. He underwent surgery to repair the hernia at 9 days old and did well, but tests revealed that he also had a heart defect that affected the way blood flowed through his lungs.
Surgeons in Riley’s heart cath lab were able to close the PDA, and Maverick began to heal, but setbacks with his underdeveloped lungs meant he was never able to successfully come off the ventilator for very long.
His parents opted to have their son receive a tracheotomy to manage his airway, and after much training on their part, he was discharged with a ventilator, oxygen and a feeding pump.
Still, that feeling of going home? Well, it was “amazing,” Brianna said, after seven long months away. And it was always on Maverick’s time. Earlier hopes for discharge kept getting pushed back.
The family celebrated 100 days in the NICU back in August with balloons, cupcakes and a “Top Gun”-themed drawing from one of his nurses.
But on Dec. 13, it was go time, and the Presnells were packing up.
“I can’t even describe the feeling at this point. I think we’re still in shock,” she said after her first night at home with her baby boy and the rest of her family.
“I was so excited to go home, but at the same time I was so scared. Riley has been our home; the nurses have been our family. I don’t know what we’re going to do without them.”
Just in the short time he’s been home, Maverick already seems happier and more active, his mom said.
“He is trying to roll over, and he’s growling and talking to us. That’s his favorite thing to do.”
“We lean on the palliative care team quite a bit,” Brianna said, including nurse practitioner Kortni Haupt. “They’ve been with us since the beginning and have assured us that they will follow us through until we are ready to cut ties.”
To receive palliative care, a patient must be suffering a serious illness, not necessarily a terminal illness. Supportive care can be offered alongside potentially curative treatments.
“They walked into our room one of the first nights we were there,” Brianna recalled. “It was nice to have somebody you could cry to and vent to, someone to answer questions, and there was no judgment.”
Doctors have said Maverick might need to stay on the trach and vent for a couple more years to allow his lungs to get stronger, but his parents are just happy to have him home.
“It’s crazy to see how different he is already compared to being in the hospital,” Brianna said, adding, “We are so thankful for Riley, honestly. We wouldn’t be here today if it weren’t for the nursing staff and all the respiratory therapists. We can’t say enough good things about them.”