Tube Weaning Testimonials

Our baby was born at 37 weeks weighing 4 lb 3 oz. He was SGA, with no known health issues. From the start, he was always a fussy eater, but we were told to push through it and get the calories in him anyway we can. He always seemed uncomfortable after eating, so we tried different formulas to try and find one that agreed with him. He would always accept the bottle, but would stop eating and cry after half an ounce, sometimes making it to an ounce. At around 2 months, his volumes started plummeting and he started losing weight. He was admitted to the hospital, had routines of tests done, all showing that he appeared to be normal. He was "diagnosed" with CMPA and reflux, put on new formula and reflux meds, and given an NG tube. At that point, we were actually relieved - for the first time in months we knew that Simeon was going to get the food he needed to grow and it wouldn't be a battle to make that happen. At first, his oral intake actually started to increase, it seemed like the new formula helped to resolve some of his discomfort. Then we increased his volumes given through the tube to try and get him gaining a bit quicker. That's where things went sideways - Simeon started spitting up larger volumes 1-2 times after every feed. His oral intake plummeted, and 80-90% of his intake was via the tube. He rarely accepted the bottle and when he would accept it, he only took .5-1 oz by mouth. We were at our ends, we thought we were never going to figure out why Simeon wouldn't eat. We thought maybe we missed something in his tests done at the hospital. That's about the time I discovered Baby Care Advice through a facebook group I had joined for reflux families. I started reading the testimonials on Baby Care's website and some of them really hit home. It felt like our experience. I finally felt like there may be hope of getting my baby off the NG tube. I read the book and reached out to schedule a pre-wean with Lindsay for Simeon. Since he was born so small and had such a rough start of life of eating, he was far off the growth chart so he did not qualify for the tube wean at first. We met with Lindsay and she guided us through our pre-wean approach with the number one goal of stopping overfeeding by focusing on Simeon's behavior, not volume, and understanding what Simeon actually needs to grow at a healthy rate. Simeon's behavior greatly increased, his by mouth volume increased slightly, but we felt like we were on a good path to prepare him for the wean. Then we met with a GI. The first thing he said to us was that he did not feel comfortable with Simeon going through a wean because he was too small and couldn't succeed, we needed to prepare ourselves for a g-tube. I reached out to Lindsay who provided the comfort we needed - Simeon showed all signs that he WAS capable, and that he could succeed. We were thankful that our pediatrician agreed with her, she believed he could do it and she supported us going through the wean. Before we started the wean, we wanted to track Simeon's growth and BMI. Simeon is a lean baby, and Lindsay explained that some babies just have a stable, but low BMI - Simeon is that baby. He just keeps getting longer instead of chubbier, he's not destined to be a chubby baby and we all learned that that is OK. Once our pediatrician gave the go ahead after a few weeks of tracking Simeon's growth at the volumes that we worked through with Lindsay's pre-wean, we got the go ahead to start. Simeon had been on the tube for 3 months at this point. 

The wean was by far one of the hardest things my husband and I have ever done, but Linday was a light through the entire process. When we started the wean, the first few days were rough, Simeon was eating very small amounts and his behavior was not great. He was grumpy and unhappy, but he did sleep. Lindsay kept reminding us multiple times throughout the day - focus on behavior, no pressure, and make sure he sleeps. Lindsay gave us all the motivation and reminders we needed, even the tough love that was necessary to remind us to trust our baby. My husband had to constantly remind me to listen to both Lindsay and Simeon. By day 5, Simeon had lost a bit of weight and we were very nervous that this was not working, but Simeon's behaviors were routinely getting better and his by-mouth volumes were improving, even if it was slow progress. Despite the weight loss, there were enough signs that Lindsay and our pediatrician both recognized that Simeon could very well succeed at this. My husband and I were close to giving up, but the support form both Lindsay and our ped got us through the hardest days and told us to push through, so we did. Simeon continued to improve. His weight loss slowed, then stalled. His behaviors were amazing, and his volumes slowly started to tick up. He gladly accepted the bottle, he ended his feeds passively and happily, and he started taking enough volume by mouth that we weren't using the tube anymore. Two weeks in, we pulled the tube. The day before we pulled the tube, Simeon caught a cold from his older brother. We had all heard when babies get sick, they tend to eat less. Simeon had his biggest eating day when he got sick, so we stuck to the plan and pulled the tube the following the day. He started showing us his hunger cues more frequently and his volumes continued to increase, even while sick. We were all amazed and impressed at our little guy. Since the tube has been out, Simeon has been teething, caught another cold, and got vaccines - he ate through all these "setbacks." He went into the doctor two weeks after his tube was pulled and he had regained all the weight he lost, plus some. Simeon immediately started hitting more of his milestones within days of the tube coming out. There will never be enough words to describe the gratitude and happiness that Lindsay brought our family. The first 6 months of Simeon's life were some of the darkest days for my husband and I. We were constantly in fear for his health. The medical community didn't have answers. Lindsay had answers, she had experience, she had seen this before personally and in her work. She gave us the comfort and confidence we needed. I will forever be thankful for finding her. For the first time in 6 months, I can finally start enjoying baby life again. 

I want to share our story as I am just absolutely amazed at what this program can do! Our daughter was born with oesophageal atresia and therefore unable to swallow. On her second day of life she had a g-tube placed and was fed through this until her surgery to fix the oesophageal atresia at 1 month of age. Unfortunately there was still a leak in her oesophagus and so she was unable to even attempt to drink anything orally until she was 8 weeks old when she was allowed 5ml each feed. By the time we were discharged from the NICU at 10 weeks, our daughter was allowed 20ml to drink each feed and the remainder was put through her g-tube. By the time she was 12 weeks old she was vomiting so much that she started refusing the small amounts she was allowed to drink and so from 12 weeks she was completely non-oral. She would not even touch a bottle.

Over the next few months we were told to forget the bottle as she would never take it and we would need to focus on sippy cups and solids if we wanted any chance of getting off the tube. I was recommended Rowena’s book by a friend and read it that night. I started implementing the rules as best I could with no pressure offers.

After 5 dilatations of our daughters oesophagus we were told there was no physiological reason she could not drink now, however because she wasn’t drinking anything our hospital could not offer a tube wean. My husband and I decided it was time to book a consult with Lindsay. We had heard so many positive stories on the BCA Facebook support page about how amazing she was. Well they were right. Lindsay is AMAZIng! So supportive and giving so much of her time to answer questions, give feedback on my MANY videos and even lend an ear during my emotional times.

It turns out we have a particularly stubborn and independent little girl and after 7 days of tube weaning she showed very little progress, and it was emotionally very difficult. She would barely touch the bottle and only occasionally allow it into her mouth. We decided to stop the tube wean and do a second attempt a month later. Lindsay left us with a plan and I continued to offer the bottle, ensuring I was still following the rules.

Two weeks after stopping the tube wean our daughter grabbed the bottle from my hands and started to rub it over her two teeth. A week after this when I offered an evening bottle before I tube fed her, she suckled the bottle and drunk 15ml. I was in awe. I did not expect this. On the following day she drank 350ml. The next she drank 270ml and  on the 4th day after that little suckle, she drank more from a bottle than I had ever tube fed her. I now can’t make her bottle fast enough because her little hands are trying to grab it from me while I’m making it!

Our little girl just needed the time to realise that the bottle was ok. It wasn’t scary, nobody was going to pressure her. It was all up to her. We couldn’t have got to this point without Lindsay and we are eternally grateful to her for her help in getting here.’

Thank you for everything once again.

There are no words to express how thankful we are for Lindsay. She supported, suggested, helped, and encouraged us in ways I didn't think were possible. I am forever grateful for the time she spent with us and guidance that was given throughout my daughters tube-wean. My only regret is not pulling the trigger sooner. So if you have any doubts, don't--DO IT NOW!!

My daughter, Kolynns, was a healthy, full-term baby girl born mid-August. Just like any other baby--she would eat, poop, and sleep..A LOT.  I exclusively pumped for my first, so I said why not for my second. At 2 months old, she had her well-check and I became concerned because she would barely eat 3oz with each feed. I mentioned this to her provider, but she said she was growing just fine at that time. A month later the whole family went through weeks of sickness--flu, stomach bug, and the list went on. On November 15th, I took both kids to the doctor for a sick visit. Kolynns was diagnosed with an upper respiratory virus. This was also the day our lives changed forever--her doctor heard a heart murmur. On November 16th, we saw a pediatric cardiologist where we were told she had a very large VSD and she would need medical intervention by 6 months old. A couple more days passed and our girl was just not herself..she barely ate, was very dehydrated and wheezing. I decided to take her to our local children's hospital where she was diagnosed with RSV and rhinovirus. During this hospital stay she was diagnosed with failure to thrive and she needed an NG tube for nutrition. Once placed, the speech therapy team also evaluated her swallowing capabilities and with her cardiac issues, her respiratory rate was very fast and she was at high risk for aspiration. A week passed and we were discharged with her NG tube and NPO unless told otherwise. 

We saw speech therapy weekly and we tried to introduce the bottle daily but she became uninterested as the days passed by. Her NG tube stayed put and we followed the plan given to us--bolus and overnight continuous feeds. At the time, we were so thankful for her NG tube. This meant growth which in turn meant meeting requirements for a successful surgery. Her feeds were fortified up to 28kcal which meant a lot of extra calories. She tolerated her feedings most days, but as we got closer to the surgery date, she started to spit up more. At this point we were weighing out our pros and cons and as long as she was gaining weight, we tolerated the spit up. 

 On January 26th, Kolynns had her open heart surgery. A couple of days post OHS the speech team was ready to evaluate her oral feeds because ultimately we didn't want to go home with the NG tube. During her evaluation she was very uninterested and could take it or leave it. We made the decision to reinsert her NG tube and be discharged with it. We were discharged on a lower fortification but we were still doing bolus and overnight continuous feeds. We saw speech therapy weekly, but no big changes were made.  This was a very big stress in not only Kolynns' life, but ours as a family. At 4 weeks post OHS, my husband and I decided we needed to stop her overnight feeds. We took our chances and tried a wean on our own..it didn't work. 

 

Around March 9th (6 weeks post OHS) we were ready to give up. Kolynns didn't want her bottle--she couldn't even look at it without crying. My husband and I joke about it now, but we had more spirited discussions over her NG tube than her OHS. I was ready to throw in the towel. I started googling and searching any avenue I could find. I found a couple of feeding groups and decided on BCA. I filled out a questionnaire form and hoped for the best...we were grasping for straws. Within hours, I received an email from BCA and they decided she would best benefit from a preparation tube weaning program. I booked with Lindsay and the following day we had our consultation via facetime. Lindsay took her time and laid out the foundation for Kolynns to be most successful. We followed the plan, made adjustments and responded to her feeding cues. Within the same week, her behaviors changed for the better!! We were in shock and disbelief. Our pediatrician wanted her to gain a little more weight before we started the standard tube wean so we followed the prep plan for two weeks. 

On April 1st we started her standard tube wean. Some days were harder than others, but we continued to push through and trust the process. We doubted the program at times and I told my husband it wasn't going to work multiple times, but we kept going. By April 4th, Lindsay was starting to think we could pull it on April 5th. This brought on a lot of anxiety, but also a lot of excitement. I became reserved and asked if we could give her just one more day with her NG tube. On April 6th, we let Kolynns pull her own NG tube and since then we haven't looked back. She enjoys every feed and is so eager to eat. She loves her bottle. She squeals with excitement at the site of table food knowing she's about to fill her belly up with goodness.  

In closing, I will admit this wasn't easy. I struggled for many days asking why? Why me? Why Kolynns? But I trusted the process and reminded myself this was a marathon, not a sprint. With many things in life comes struggles and hurdles, but with much prayer and patience, I can proudly say we made it and so can you!

We really have no words & thank you will never be enough for the time, effort & encouragement Lindsay put in to our tube weaning program.

My son was literally born unable to swallow, his stomach & esophagus were not connected. Instead they were two separate closed ends. J spent the first three months of his life in hospital & underwent 4 pretty major surgeries all in which he was intubated for. He had numerous traumatic experiences whilst in hospital & came home from hospital with a feeding aversion. For good reason. J feared the bottle & refused the breast. He had severe reflux following surgery to connect the two ends of his esophagus and stomach and would vomit frequently. We were pushed to increase his feeds even though he wasn’t coping just to hit the ‘volume’ that most babies his age would be on.

Finally, at our wits ends with J’s g tube we began to do our research & that is when we came across Baby Care Advice and Lindsay. We booked a consult right away. Lindsay was so thorough & articulated every aspect of the tube weaning process so well. J had massive improvement after the first week of the program, but he was not taking enough orally to continue long term. We were reassured by Lindsay that he absolutely has the capability to feed orally & to have another go in a month or so, the break would do him good.

Fast forward 2 months and with the support of Lindsay, after 4 days J was completely oral feeding!! No tube feeds, no tube top ups! Just purely bottle fed. We didn’t even know J’s stomach could tolerate the amount of milk he was drinking at a time, 230mls before we put him down to bed and anywhere from 750ml-950ml over the course of the day.

We are in disbelief at how well J is doing, there has been the best of days & some really rough days. It is so stressful when your baby does not drink & easy to pressure them, we know this first hand but we were very strict with sticking to the program & we actually still follow the golden rules with most feeds. J is healthy, happy & has the cutest chubby cheeks in the world. We will honestly never be able to thank Lindsay enough.

If you are questioning whether or not to book a consult, do it! It is worth every cent.

I told my husband when we started the tube weaning program that if the program worked, I would shout it from the rooftops. So here I am shouting from the rooftops!! THIS PROGRAM IS AMAZING!!! Lindsay Wark and the tube weaning program gave us a new baby, gave us our lives back, and kept our little guy from a G-tube. I am eternally grateful!!

Here is our story. My son who was full-term with no medical problems was never the very best eater. His growth was slow, and he was falling more and more off the growth chart. Per our GI doctor I started having to pump, and adding extra calories to his milk with formula. GI and speech pathology told us he was very uncoordinated at the bottle. They put him on a specialty bottle, and told me to swaddle him and use chin support to help him eat better (which now I can see how this was a subtle form of pressure!). Our son kept getting worse, more uncomfortable, and eating less. And finally got to a point where we were having to feed him a lot while he was sleeping to try and get it enough milk in him (which is very common with aversion). The G.I. doctor had been talking for a little while about potentially putting in an NG tube, which I was resistant about, but after a while of him drinking less and less and starting to lose weight (and he was already under 1st percentile), I caved and agreed to the NG tube. After getting the NG tube my son pretty much stopped taking any milk by mouth (except when asleep). He would take 0.5 ounces at the most, but usually would just outright refuse or take a few sips. We were so discouraged! We were hoping the NG tube would help him grow, and help him get used to having more volume, and that he would “just grow out of it and start eating” (as we were told would happen eventually). The NG tube made me upset all the time. Not only was I so discouraged that he wasn’t drinking by mouth, but he pulled his tube out all the time and having to insert the tube and do dressing changes were so traumatic for all of us. I just hated it!!

I ended up ordering Rowena’s book (as recommended by my step sister who implemented the book with great success in her son), and as I read it, I was continually amazed at how our son’s behavior was exactly what was described in the book. The part of the book where she describes the common progression of aversion in babies and how you get sent to various doctors and get certain diagnoses was so incredibly similar to what we went through. I started to feel some hope that maybe her son really did just have an aversion and wasn’t unable to eat (or wasn’t coordinated enough at sucking). After doing some of our own research, and seeing how allowing hunger is the best way to get babies off of feeding tubes, we decided to go ahead and book a consultation with Lindsay.

I cannot say enough positive things about Lindsay and the tube weaning program! Lindsay was knowledgeable, thorough in all her responses, and so very kind as well. She spent a ton of time with us on the initial consultation via facetime, and answered my millions of questions via email in such a helpful, kind, and thorough way. If it weren’t for her, we probably would’ve given up on day three. I can’t lie, the first 3-4 days of the program were hard. But then by day 4-5 his behavior around the bottle really started improving, and by day 7 or so his intake had improved as well. We were gifted a new baby!! Before the NG tube, we would be fighting with our son for close to an hour trying to get him to drink, then after the NG tube, we ended up having to put almost all his formula through the tube. Now our son drinks a bottle in 10-15 minutes! He now has no NG tube and is back to growing very well! We were on our way to a G-tube within another month or so if we had not done this program. GI, speech pathology, and occupational therapy could not fix our son, but this program did. Lindsay, thank you from the bottom of our hearts!

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, esophagogastroduodenoscopy, 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.

We opted out for working with Rowena via Skype consultations as we live in USA. Her knowledge and guidance completely transformed our lives. We had a tube fed baby, not thriving and refusing anything orally and soon to have G button surgery. Thanks to Rowena we avoided the G button surgery, weaned off tube feedings and by now have a completely healthy child. It has taken hard work, time and our dedication but without Rowena we'd have not gone this far! Thank you Rowena for all your help and helping us have a healthy eating child!

There are no words to express our sincere gratitude for all that Lindsay has done in supporting us through our daughter’s tube weaning process. Our baby now lives for her bottles, and we truly enjoy her feeding experience. Our daughter was born at 29 weeks and was fed through the tube right from the start. Once she was big enough for bottle feeds, we discovered she had a significant dysphasia and inability to swallow safely. As her swallowing issue was due to her prematurity, we were hopeful that the NG tube was a temporary solution. Finally, at around one month of age (corrected), our baby’s swallowing improved, and we were allowed to start bottle feeds. However, soon after we introduced a bottle, our daughter would scream at the sight of it, back arch and try to escape from my arms. She would barely drink (20-30mls only), even if she was clearly still very hunger. Seeing our baby so distressed during what otherwise should have been the highlight of her day, was one of the most traumatic experiences we have ever had as parents. We were at our wits’ end. We spoke to her medical team on a weekly basis. Now, looking back, I realize, how despite their best intention, their feeding advice was not entirely correct (things we shouldn’t have done according to Rowena’s book). Once we saw no hope in our baby drinking more and we knew that only giving her more time wasn’t the right answer, we researched and found BCA and Lindsay. I still can't quite believe how, under Lindsay's plan and amazing daily support, we started to see a significant improvement in our baby's milk volumes within a few days. She let her guard down, started to trust me as her feeder, and enjoyed her bottle. She finally looked at me, smiled and gobbled her bottle, and it was all thanks to Lindsay. Lindsay's knowledge and experience helped us achieve something we thought was impossible. She showed great empathy, kindness and understanding. Lindsay gave us confidence to trust our girl and ourselves. She also taught us how to REALLY LISTEN and UNDERSTAND our baby, which to the first-time parents, was all so new. Under Lindsay's guidance, we removed our daughter's NG tube within a week. We now trust our girl to tell us how much she wants to drink, and she is happy, healthy baby. If you are asking yourself if to book a consultation - just do it! It will be one of the best decisions you will make for your baby, yourself, and your family. We were so pleased with Lindsay's support that we are currently working with her on our baby's sleep training. Thank you, Lindsay, and BCA from the bottom of our hearts!