The family of Baylie Newcomb, who was born with a rare genetic disease on April 30, have a lot to be thankful for this year.
Baylie, who will be 7 months on Nov. 30, has had two more surgeries since Aug. 30, when The Gazette first checked in with the family. She had a tracheotomy and a G-Tube put in. A G-Tube is a feeding site tube. Feedings are given through a small hole in Baylie’s tummy.
“She is still needing extra support of the vent,” Baylie’s mom, Julie Newcomb said.
Newcomb added that Baylie’s lungs need help functioning. They tend to stick together Newcomb said.
Newcomb said Baylie has had a couple of projected dates to go home, but she keeps getting sick. The next projected date is in December. When she does come home, she will need around-the-clock nursing for the first few weeks. The care will be re-evaluated after that initial time frame.
“That kinda helps ease everything in,” Newcomb said. “She has to have some type of care all the time.”
Newcomb said it is stressful having the family split up. Julie Newcomb is in Kansas City with Baylie’s 2-year old twin sisters, Chloe and Penelope. Baylie’s father, Don, usually goes up on the weekends, which is a 90 minute to two hour drive from Emporia.
“It’s been really stressful but we are pulling through as best as we can,” Julie Newcomb said.
Don Newcomb works during the week at Hetlinger’s. He also has been busy preparing the home for Baylie’s arrival, now set for Dec. 6. He also runs all the errands at home, sorts through the mail and re-organizes the home.
“See, that’s quite a bit. He does quite a bit of behind-the-scenes stuff,” Julie Newcomb said. “He’s done a lot of stuff. He got her room ready. Her room is now the living room because of all her equipment.”
Don Newcomb earned his CDL license so he can drive for Hetlinger’s to pick up more hours.
Julie Newcomb said her family has a lot to be thankful for this holiday season, including having the whole family together for Thanksgiving, which they will spend at Children’s Mercy. The family hoped to take Baylie to the cafeteria, but now plan to celebrate in Baylie’s room because she remains in isolation. The hospital is allowing them to bring their dinner up to her hospital room.
“We are thankful for a lot,” Julie Newcomb said. “For the support we’ve had from all over the place. Even from people we don’t know. We’re thankful for all our kids and we’re thankful for the (mini-van) that was provided.”
Newcomb said the family also is thankful for each other.
“I’m thankful for (Don’s) support in coming to see us each week,” Newcomb said. “It’s an exhausting trip. We’ve just made the best of the situation. I’m thankful that we’re growing together instead of letting it hinder anything.”
You can help
The Newcomb family needs:
• Monetary donations
• Size 3 and Size 5 diapers
• Developmental items/resources for Baylie
• Size 8 snow boots for the twins
• Battery operated lantern
• Hand sanitizer
F The Newcombs are registered at Target and Wal-Mart
Donations can be dropped off during weekday evenings at the Newcomb’s home. Please call ahead to 343-3414.
To see Baylie’s Web site and online journal go to: www.caringbridge.com and follow the link to visit a Caringbridge site and type in “baylie.”