Baby Remi was five days old when we first met last July. Nine months later, her mom has an update for us all. (I get lots of emails asking about Remi!)
This Alexander County baby was born with a birth defect where her stomach and intestines were in her chest cavity, her heart was pushed to one side of her chest and her lungs weren’t developing normally.
“I’ve been meaning to write long before now,” Natasha said. “She has been on oxygen support since she came home from NICU. We’ve been trying to wean her off the oxygen, and are now down to only needing it for naps and bedtime. She has been thriving every day.”
Natasha is a glass-half-full kinda woman. She doesn’t like admitting rocky roads but finally did.
“It hasn’t all been easy,” she said. “Remi was diagnosed with Infantile Scoliosis in January. She also ended up needing open heart surgery. We just had it done April 3rd. The doctors told us to prepare for a two-week stay… they released her four days later. It was a good sign she’s doing really well. I couldn’t have been happier!”
See what I mean about glass half full? Natasha has a great attitude.
“Remi’s heart and lungs come before her spine so we haven’t been able to deal with the scoliosis yet,” Natasha said. “We hope in the future to get the curve under control, but we’re for now just playing that by ear.”
There’s also concern Remi might have to go through another heart surgery.
“We don’t know yet,” Natasha said. “We’re hopeful she’ll recover from this one well. In the original #MollysKids post, you said she had a 50/50 chance of survival. That’s what doctors told us then. And now... nine months later... you have to see her. She’s simply amazing! Our daughter blows our minds. She has always pulled through everything she has been through.”
I did go back to see that original post after Natasha referenced it (read it here), and was struck how even when she was first born, Remi’s family says they’d never, ever give up.
They were right. They haven't.
Thank you so much, Natasha, for sending an update. Love hearing all parts.
**Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published there, which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story and updates on all #MollysKids here.
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