“Barely a month later, and Wallace is devouring food like a champ!”
Wallace was born at 28 weeks, 3 days with an extreme version of TEF/EA. For those that haven’t heard of this birth defect, it’s where the part of the esophagus that comes down from the mouth is just hanging there, ending in a pouch that formed from being stretched out when the amniotic fluid had nowhere to go in-vitro.
“I thought that our situation was different from most I read about on here. But what I’ve learned is that it comes down to GIE’s philosophy and methodology that works, regardless of our diagnosis. I am so glad I found GIE to help us wean that I felt compelled to let others know. If you’re considering contacting them, in my opinion, the sooner, the better!”
"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…
“The accessibility, patience, and nurturing we received from Olga & Becky was unparalleled to anything we expected or experienced through our journey with our son. I was so scared to wean him, especially since I never felt the medical community ever helped us or listened. GI Eaters actually listened to us and gave us a real plan and held my hand every step of the way. That was what I needed the most!!!”
"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…
"Having the emotional support to start provided the courage needed to go ahead with a wean. I only worked with Olga and Becky but both were extremely knowledgeable, compassionate, and understanding. Made me feel comfortable following their guidance throughout the process. Without those traits, I'm not sure I would have felt comfortable, and without feeling comfortable, I'm sure we wouldn't have gone ahead with a wean."
"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…
“Being provided with so much information made me feel confident in making the decision to wean our son in the first place, without the guidance of our medical team. Talking with members of Growing Independent Eaters who could empathize because they had been where I was and had also helped so many other families through the exact stresses that we were feeling.”
"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…
“Oh, the affordability of the program! A $5,000 program was not possible after all of my son’s medical expenses that year. The combination of experience and knowledge with kindness and genuine concern made me so happy that we chose GIE, in addition to of course being tube free!! I am so happy we chose to work with you and only wish we could have all worked together sooner.”
"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 appreciated having a step by step plan of tube feed reduction to follow based on my son’s cues and not having to track every single calorie or mL. If our GI team had followed a similar plan, I would’ve had to have frequent appointments before making changes. I also liked being able to get fairly quick answers to questions when I was unsure about whether or not to advance or supplement water.”
"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. 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…
“Over a month now with zero tube feeds and Natalie hasn't slowed down one bit. Thanks to our GIE team!”
"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 appreciated the general assumption that my son would succeed and without a lot of stress. This made it easy to ignore the days he didn’t eat much. I also liked being to ask about various behaviors and report back to my husband, who was a bit more anxious about the process and worried about sticking to our usual routines and discipline. Overall, it was a very positive experience and we have been thrilled with the outcome.”
"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…
“Here we are: one month without his NG-tube! If you would have told me three months ago that we would be here, I would have laughed in your face. After many nights of crying to my husband and praying to God to give me the answer to help my baby eat, we finally found GIE and gave them a chance. It only took this guy 10 days to fall in love with his bottle and we plan to never look back!”
"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…
“Just in the last 10 days he has gained 9 ounces!! He is getting more milk now than he ever was while being tube fed. If you are on the fence of taking a chance with GIE, stop stressing and give them a shot. It is worth every single penny to see my baby so happy, healthy and truly comfortable! He started his wean at 13lb 12oz, got down to 13lb 6oz, and then today he is up to 14lb 5.5oz!”
"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…
“It is absolutely worth every penny to wean with GIE. They are 100 percent the reason that my son went from full tube feeds to full oral feeds within 2 months. I didn’t believe it was possible and I was convinced I’d be one of their first failures. Our son now loves eating and his once constant gagging/retching all day long on tube feeds is now non-existent!”
"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…
“Trust GIE and the process! They know what they’re doing more than most MDs out there when it comes to this! Hunger is something that needs to be learned if a kiddo is tube fed for his or her entire life and the learning isn’t as simple as you’d think. I will be forever grateful for their help with our son!”
"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…
“You guys showed me that NORMAL kids do not eat the same amount of calories every day, 365 days a year, regardless of activity level. Before GIE we were listening to doctors and nutritionists telling us that we need to put 1265 calories in our daughter every day no matter what. My daughter is eating and chewing and most importantly she is still on her own growth curve and growing. Thank you!”
"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…
“They are well worth it! GIE is very knowledgeable, supportive, and helpful - an amazing team to have on your side. Our only regret is not doing this sooner.”
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…
“A wonderful group full of people who have or are walking the same path. I received great support, tips and advice all via email, after feeling lost and frustrated by what my medical team were telling me. Thank you!”
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…
“I love this group with such caring and devoted people in it. It feels so good not to be alone on this road and get some ideas from people who know what you’re feeling.”
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…
“Growing Independent Eaters is an amazing group to work with. Without their help my son would still be 100% dependent on his gtube. Olga, Becky and Kathryn were there every step of the way and offered us hope and a plan, something we weren't getting from our medical team. If you are considering a wean I would highly recommend GIE. It was the best decision we made!”
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 son has a chromosomal abnormality that most would just assume would leave him tube dependent for life. GIE gave him a chance and because of their help he has been all oral for 8 months and will get his gtube out soon!”
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…
“All of them are amazing! Lisa has been a breath of fresh air from an dietitian perspective and Olga is so spot on with everything she says!”
"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…
“GIE, I love what you do and thank you! Amazing group of people with hearts of gold!”
This GIE graduate is 6 months tube free!
She got an NG-tube when she was 4-months-old for silent aspiration on all thicknesses. She passed purees and nectar thick liquids when she was 6 months old, and we started our wean when she was 7.5 months old. I have some advice for those of you thinking about starting a wean with GIE…
“We weaned with GIE support quickly and as painlessly as an NG tube wean can be. Forever grateful.”
Ella has had a long road with feeding.
She was NG/NJ fed her entire life up to just over a year old. We had tried so many ways to get her to eat, but nothing was working. We were constantly battling vomiting and what we thought was oral adversity, until we found Growing Independent Eaters and their weaning group…
“We took a chance, made it a financial priority, and reached out to GIE despite what our feeding teams and therapists were telling us. GIE changed our lives completely for the better, and I shudder to think of where we would be without them!”
It took six weeks to wean Jack from 100% g-tube fed to 100% oral feeds.
Jack was born with a rare genetic difference, and eating was difficult for him since birth.
The medical world is very good at putting G-tubes in children who need them but, unfortunately, they have no plan ever to get them out. It was important for me and for his quality of life to become an oral eater whenever he was ready…
“To those who are living it currently seeking hope in their child's story towards oral eating, there is hope. GIE was the start of our hope, and I’m forever grateful for their plan and support. Jack is now a thriving 2-year-old and is a very independent eater! (& drinker)”