"I WAS TURNING TO THE 'INTERNET PEOPLE'..."
I have never met Becky or Olga in person, but they will forever be remembered in my family for being the people who helped my son, eat. Ian was born with congenital heart disease and laryngomalacia and had a NG tube placed at a month old.
"THERE WAS NO MEDICAL REASON TO HAVE A TUBE"
My daughter got her tube at eight days old and for 12 months straight was tested over and over with no positive results or answers to why she wouldn't gain weight. She was overfed to stretch her stomach and vomited almost daily. In turn, this caused a significant oral aversion. There was no medical reason to have a tube but there were no doctors locally that would support a wean in fear of weight loss.
"THEY WERE SO WARM AND CARING, MAKING SURE *I* FELT GOOD, TOO"
My daughter had a NG tube for approximately ten months due to Failure to Thrive and an extreme aversion to the bottle. No matter how hard we tried, she would not drink. Our local hospital was quick to place a NG tube, and sent us home.
"THERE IS NOTHING I REGRET ABOUT CHOOSING TO WEAN WITH GIE"
Emil was born with a laryngeal cleft, which was not found until he was four months old when it was repaired. We always knew he had trouble eating though; he was aspirating very consistently with both thin and thick liquids. His G-tube was placed at five weeks old, and it was a joy to finally watch him put on weight... and for a time the stress was taken off our shoulders - feeding had been stressful since birth with his coughing and choking.
"WE VETTED EVERY MAJOR TUBE-WEANING PROGRAM OUT THERE FOR MONTHS, AND WE KNEW THAT GIE WAS A PERFECT FIT."
At 36 hours old, Winston was postnatally diagnosed with Hypoplastic left heart syndrome. After a traumatic intubation and near complete organ failure, he was rushed to the nearest children’s hospital. Winston would spend the next 8 days in a medically induced coma.
"I BELIEVED HE COULD LEARN TO EAT, BUT I WAS ALSO AFRAID, BEING THE ONLY ONE WHO BELIEVED."
My little buddy, Arlo, was born with Mosaic Trisomy 18. Trisomy 18 is a chromosomal abnormality that can be highly discriminated against in the medical community. Many hospitals refuse to do life saving surgeries on these babies, etc. My son came home from the NICU with a g tube at 2.5 months old, and we started feeding therapy right away as that was really important to us.
"After 5-6 weeks, the NG was gone, and we have been tube free for about 2 months."
My daughter, Everly, has HLHS. She was on an NG tube since her Norwood, and we waited for magical eating to take place post-Glenn. It didn't happen. Even though she ate all of her bottles right after the Glenn, she wasn't drinking fast enough and we had to put the NG back in. But, we hit therapy hard -- Speech, OT, Feeding Clinics -- with no change. Her tummy was full from her tube feeds, and she completely stopped taking bottles.
"I wish we had taken the plunge and contacted GIE sooner."
Our feeding journey began when Oliver was born. He was diagnosed with Coarctation of the Aorta at 24 weeks gestation and we knew he’d be facing heart surgery within the first 2 weeks of life. As a precaution and because the doctors couldn't be sure if circulation to his digestive tract was compromised, they didn't allow him to eat until after his heart was repaired.
"I cannot say enough positive things about GIE. They helped changed Foster’s path."
While initially, it was medically necessary for my son to have the tube, we had no support from our medical team on how to wean him off and how to help Foster understand hunger. But with GIE, I felt supported and validated in wanting to try to help my 3-month-old baby eat naturally.
"Some may call it naivety, but I call it mother's intuition: I just knew Genevieve would and could wean."
Genevieve has developmentally exploded (in a good way!) these past few months, and I believe it's all tied to the independence she has gained with food, off the tube. So thank you, again! We, along with our whole cardiology team, are so pleased!"
"Working with GIE was the best decision we ever made."
My son was born at 29 weeks gestation with Long Gap Esophageal Atresia. At two days old, he had his g-tube placed so that he could grow enough to have surgery to connect his esophagus. Gera’s surgery wasn’t until he was five months old and he wasn’t given the OK to eat orally until he was seven months old. This turned into a major hurdle.
"The day I wrote my first e-mail to GIE was the first day of the rest of our (and Luca’s) life."
GIE guided our family (transatlantic) through the wean. A fast wean! Because the day we signed with GIE, Luca started to eat! They helped us to decrease feeds (safely) again and he took off! He was fully weaned in 4 weeks! He was ready.
"We would not have been able to do this without GIE, namely Olga, Becky, and Elisabeth"
We learned that the hardest part of weaning is weaning yourself, and learning to trust your baby. We were so grateful to be able to build a community around us of people who understand how demanding and frustrating weaning can be.
I tell everyone who asks how she's doing that GIE saved our family.
Zayda started life eating amazingly. At 3 weeks, she projectile vomited. She had a tongue-tie which was fixed and a casual diagnosis of reflux. By 6 weeks, eating was hard and by 10 weeks, without ever knowing why, Zayda refused milk altogether except when asleep.
The picture on the left shows how much of our son’s esophagus was missing at birth. A hell of a lot!
The GIE team was right! They know how to do a tube wean better than most doctors out there! They held my hand the entire way, answered all of my frantic texts (even on the weekends), and our son was fully weaned off tube feeds within about 6 weeks!
Viv is 18 months/16.5 adjusted, a former tubie, and a graduate of GIE's new Happy Eater program!
At 11 months old, when she just couldn't do solids, I was certain we were headed for another tube. She didn't gain any weight for almost 5 months. But here we are! Eating happily as a family, enjoying new foods, and 2.5lbs heavier! So very thankful to GIE for helping us post-wean. I feel like I can finally breathe after a year and a half of worry.
Since NG-tubes aren’t meant for long-term use, our doctors said our only option was to go for surgery to get a G-tube in.
We prayed for another way, and after some unusual encounters with strangers who turned out to be moms of tubie kids, we were led to GIE. It was an answer to our prayer, and it was our turning point!
My daughter was born premature with a congenital heart defect. We had so many ups and downs, but eventually made it home with an NG-tube in tow.
To the parents that read this page in times of despair with so much hope that one day your child can be a GIE success story, I offer you a bit of encouragement because it CAN and WILL happen. I experienced hope, disappointment, joy, anxiousness, laughter, LOTS of tears, but I gained a family in GIE!
"A DAY INTO OUR WEAN WITH BECKY AND OLGA THE VOMITING STOPPED..."
My daughter began losing weight soon after birth as she was too weak to suck a bottle well enough. At the hospital they inserted an NG tube, taught us how to use it, and we were sent home. It was followed by months of figuring out what was medically wrong while also struggling with what doctors and dietitians were telling us was the amount of calories to provide her.