Tube Weaning Testimonials

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!

We were in a really bad place when we found Rowena. My son had open heart surgery when he was 6 days old, and due to complications with his airway, he struggled to feed afterwards. He was fed via NG tube and the local team told us he would start taking more as he got bigger. Of course we believed them, but over the next few months, he took less and less, eventually refusing to put the bottle in his mouth, and it developed into severe oral aversion. We attempted a rapid wean at 5 months, but it failed, and my son was hospitalised and came home with a feeding pump and on a 20 hours per day regime. In time, a PEG was placed. But he was vomiting round the clock and life with the tube was pure misery. He wasn't growing, wasn't gaining weight, and the NHS were pressuring us into allowing him to have a Nissen's fundoplication, or a jejunal tube placed. We were in a really dark place. Through a friend of a friend, I found Rowena. We were at rock bottom and had one attempt left at weaning our son before we would give in to the NHS. I found Rowena to be very thorough in her questions and in the initial consultation, and she made us no false promises and explained that whilst he sounded like a difficult case, she did believe that it would be possible to wean him. With the NHS pressuring us and time not on our side, we began Rowena's programme without telling them. In our heart of hearts, we wanted to believe Rowena's ideas could work but we just didn't think it would. But we gave it one last shot. Within a week of working with Rowena, our son stopped vomiting. And within a month, he put food in his mouth for the very first time! It felt like no-one in the world could help our son except Rowena! It has taken us 10 months to wean our son from the tube fully, and without Rowena, I truly believe he would still be tube fed and we probably would have accepted the Nissen's. Rowena's support has been amazing in so many ways. Here are some of them:

1. She gave us no false hope but gently believed that he could be weaned
2. Throughout the wean, at points when I was in really dark places, Rowena would always email me in a sympathetic but pro-active manner, i.e. she understood why it was so emotional for me but that I had to pull myself together!
3. She is so dedicated to her clients, that she emailed us from her hospital bed (after a fall) once when I needed help!
4. Further down the line when we had pressure from the NHS to go back to full tube feeds because of his lack of height gain, Rowena wrote a report for us and gave us all the tools we needed and questions to ask to challenge the doctors with confidence (which meant we went away from that appointment standing our ground)
5. She helped me to realise that a rapid wean didn't work for all children and that I shouldn't feel like a failure because it didn't work for us. 

And so many more! I am SO grateful that we found Rowena. I truly truly believe that if we hadn't, my son wouldn't be an oral eater now. Working with her has been life changing and we just can't thank her enough!