The Inspiring Story of Jackson's Tube Weaning

The Inspiring Story of Jackson's Tube Weaning

The Inspiring Story of Jackson's Tube Weaning
I feel as if we owe Lindsay our lives, or at the very least our sanity because before her we had very little of either! If you are like me and are reading these testimonials trying to decide if the consultation is worth it-it is! My only regret is that I didn’t do it sooner. I’ll admit the plan can be difficult for your baby and you, but if you stick to it and follow the rules you will see results! By the end of the 7th day, Jackson was taking all feeds by bottle and he had previously not eaten anything by mouth in over 5 months!! Booking the tube weaning consultation with Lindsay is the best decision I’ve ever made for Jackson. 

Jackson’s story is a long one despite him only being 8 months. I’ll give the details here because reading other people’s journeys-especially, the ones with significant medical interventions are what helped me decide to book the consult. By the time we found Lindsay, Jackson had seen 21 medical professionals, none of whom were able to give us any solid answers as to why he would not eat by mouth. He had been in feeding therapy for 5 months and we had tried every bottle on the market and every technique shown to us with absolutely no progress. Jackson has had multiple scopes, a FEES test, echocardiogram, swallow studies, a gastric emptying study, ultrasounds of his stomach, many x-rays of his abdomen, upper GI series, laryngoscopy, esophago-gastroduodenoscopy, biopsies of his GI tract, brain MRI, many labs and probably other things that I’m leaving out.

Needless to say, it’s been a long difficult journey for him and us! He was born at term but small at 5 lbs 14 oz. He was labeled small for gestational age and I believe that diagnosis is where all of our problems began. He was 100% breastfed originally and things went well for about 3 weeks. During the 4th week of his life everything fell apart. He started refusing the breast so we switched to bottles. The volumes he would take by bottle continued to decrease to the point where he would only consume about 10 oz in a 24 hour period total and that was with me trying what felt like every second of every day to get him to eat. This is where we entered the ‘medical maze’. He was trialed on different medications for reflux and when those didn’t work the dosage just kept increasing. Despite eating well for those 3 weeks, I was told by what felt like everyone and their grandmother, including his doctors, that he was too small and not following the “curve”. This is where the pressure to get him to eat started and that became my whole life-just trying to get Jackson to eat more. Food allergies were suspected so I started on an elimination diet where it I only ate chicken and rice for breakfast, lunch and dinner to try to eliminate allergens from my breast milk so that he would be more comfortable with eating. This didn’t work so we started on hypoallergenic formulas that also failed to show improvement. He developed hernias that needed to be surgically repaired when he was 3 months old. After these surgeries I refused to leave the hospital until we were seen by a feeding therapist. After her evaluation Jackson had a NG tube placed and I remember feeling relieved to have it because at least now he could get food. He was labeled failure to thrive during this hospital visit and we ended up staying 10 nights while many of the before mentioned tests, studies and procedures were conducted to attempt to identify the cause of his feeding issues. Nothing yielded results so we were eventually sent home with the tube. Fast forward a month with no improvement in oral feeds or temperament and he then had a G tube placed during which time he also had an “exploratory” surgery to once again attempt to identify the cause of his issues. Once again everything came back normal. I remember feeling disappointed that everything was normal because this meant there was no solution to our struggle-what kind of mom wishes that doctors would find something wrong with their child! I was so desperate for answers and a solution that I didn’t know what to do. I knew the G tube was just a band-aid and wasn’t fixing our actual problem. We continued to get second, third, fourth and fifth opinions from ENT, GI, pulmonology, feeding therapists, nutritionists, speech pathologists, occupational therapists, physical therapists, surgeons, early interventionists, dentists, allergists, chiropractors, Craniosacral therapists, you name it, we have probably seen them. With each specialist came more medications. He was eventually diagnosed with severe GERD, visceral hypersensitivity and esophageal spasms. I set alarms on my phone to remind me when to administer his feeds and medicines-it felt like my alarm was constantly going off even into late hours at night. For a few weeks we had at least one appointment and usually multiple every day. We weren’t able to enjoy Jackson and he was never allowed to just be a baby!

As you can imagine, we all were at our wits end. Thankfully, we finally found Rowena’s site. I ordered her book, stayed up and read it through in one night and booked the consultation with Lindsay as soon as possible. She was amazing and supported me every step of the way. Once beginning the program Jackson began to make progress almost immediately and was no longer tube fed AT ALL after just 7 days! He now happily consumes 20-24 oz of fortified formula every day and we are looking forward to weaning him off of his medications and beginning solids soon! I cannot recommend Baby Care Advice enough.

Testimonials

There are no words to express our gratitude for all that Lindsay has done in supporting us through our daughter’s tube weaning process. Our baby now loves her bottles, and we enjoy her feeding experience. Our daughter was born at 29 weeks and was fed through the tube right from the start. Early on, we also discovered she was unable to swallow safely. Finally, at one month of age (corrected), we were allowed bottle feeds. However, our daughter would scream at the sight of a bottle, back arch, try to escape from my arms, and barely drink. Seeing our baby so distressed was one of the most traumatic experiences we have ever had as parents. We spoke to her medical team on a weekly basis. Now, I realize, how despite their best intentions, their feeding advice was not entirely correct (things we shouldn’t have done according to Rowena’s book). At the end, we researched and found BCA and Lindsay. I still can't believe how, under Lindsay's plan and amazing daily support, we saw a significant improvement in our baby's feeding behaviour within a few days. Lindsay's knowledge and experience helped us achieve something we thought was impossible. She showed great empathy and understanding, gave us confidence to trust our girl and ourselves. She also taught us how to REALLY LISTEN and UNDERSTAND our baby. Under Lindsay's guidance, we removed our daughter's NG tube within a week. If you are thinking of booking a consultation - just do it! It will be one of the best decisions you will make!

Neringa

Sophie was diagnosed with severe IUGR. At 7 months old, shortly after a GI bug, she lost a little weight. The pediatrician had her admitted that day and an NG was placed. All her doctors kept saying she just needs the NG to “get over the hump,” until she drinks more independently. She started vomiting. She developed acid reflux, started on a med. 2 months into the NG, she began to refuse the bottles totally. It felt as if everything was just getting worse. We were terrified to move her. I felt sick to my stomach all the time with stress and worry. No one ever had reasonable answers for our questions. We saw sooo many specialists. I work as NP at one of the top hospitals in the US. Late one night, while desperate, I googled “bottle aversion” bc that seemed like the issue. We booked a consultation with Lindsay. It was truly the best decision we ever made for Sophie and our family. We are approaching 3 months out from starting the tube feed weaning program. Sophie is aversion free. I can’t even believe I’m saying that. She eagerly drinks her bottles now. The tube was removed two months ago. She is gaining weight. She’s now eating solids. She just LOOKS so much healthier. We are no longer waking her up around the clock and stuck at home connected to her heating pump. Our family has a life again. Sophie’s big sister actually gets to play with Sophie now as opposed to just telling me when her tubing is getting tangled in toys. And most importantly Sophie can truly be a baby.

Sophie

Our son suffered nerve injuries at birth and was in the NICU for the first 3 months of his life. Due to all the medical interventions, he came home with a feeding tube & was 100% tube fed. He was diagnosed with severe acid reflux & was gagging & vomiting after almost every feed. He was clearly overfed but no one listened. Lindsay is amazing! She is so knowledgeable, informative, honest and genuine! Lindsay was really positive. The first few days of the weaning process were really tough. I think I have asked her hundred of questions & yet she answered every question & addressed every concern I had with empathy. By day 6 of the tube weaning process, we almost gave up as our son was losing quite a bit of weight but still not taking the volume we were hoping to see. Nonetheless, Lindsay believed in our son (when we didn’t!) that he can do it & she arranged for a phone consultation & extended her support for few extra days given that we have already come so far. This shows that she genuinely care & wanted the best for our son & she was right! By day 8, Isaiah was 100% orally fed. By day 11, he was taking up to 910ml (which was not possible even with tube feeding) and by day 13, he has regained the weight lost (during the tube weaning process) and even pulled his tube out himself! When I told the doctors that I stopped giving him Nexium & thickener & that his ‘severe’ reflux is gone & how he was having 100% oral feed without gagging or vomiting - they were utterly shocked!

Jane

Our baby was NG fed for 10 weeks due to her drop in weight. Her bottle volumes steadily declined once the NG tube was placed and she was drinking barely anything orally by the time we booked a tube weaning consultation. After less then a week, our baby was drinking happily and with reasonable volumes. It was a miracle. We really can't express in words the joy that we feel in being able to feed our baby again. Lindsay was remarkable in sharing her wisdom and reassuring us about our apprehensions prior to starting the program and during the program. My initial skepticism of this program has most definitely been replaced with resounding praise for Lindsay and the tube weaning program. All of Lindsay's suggestions and judgements are sound and trustworthy. If you're contemplating doing the program and you're skeptical or apprehensive, JUST DO IT!! You won't regret it!

Andrew & Mindy