Kristy's Tube Weaning Success Story
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.