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:
- She gave us no false hope but gently believed that he could be weaned
- 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!
- She is so dedicated to her clients, that she emailed us from her hospital bed (after a fall) once when I needed help!
- 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)
- 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!
Our story begins with a seven week stay in the NICU. Though most babies in there are premature, Caleb was born at nearly 43 weeks and weighed 12lb 13oz! At birth, he was found to have low blood sugar, which landed him in the NICU initially. We expected to be going home within a couple days.
However, within hours of birth, Caleb began to require oxygen due to labored breathing. We had planned to breastfeed Caleb, but because of the breathing issue a nasogastric tube was placed to feed him. Though his breathing issues would resolve within a couple weeks, the NG tube was where our real troubles began.
Because of his size, Caleb was a bit of an anomaly in the NICU. Surrounded by doctors experienced primarily with preemies, the delivery rate of Caleb's food was calculated the same rate as they did for tiny preemies. Based on his weight this calculation meant they continuously gave him large volumes through his tube. (We would later come to learn through Rowena that this was an overwhelming amount for Caleb's system.)
He then acquired the diagnosis of severe "reflux" (which Rowena later explained was likely vomiting due to overfeeding). Since he was overfed, any time a bottle was offered, Caleb would gag and if he did take any he would vomit up the extra.
They ran several tests attempting to explain the "reflux" and after 6 weeks of this they finally decided just to pull the NG tube out to see how he would do. There was an immediate difference. Caleb was so eager to eat and very much enjoyed his bottles. The gagging and aversive behavior had nearly disappeared.
Though Caleb was eager and enjoying the bottles, he was limiting the amount to 60 mls each feed. He had previously failed a swallow study and so they were thickening his formula with oatmeal. Because of the volume limiting, Caleb failed his oral feeding trial in the hospital. He did not drink as much or gain as much as they expected and become dehydrated. (Rowena later explained to us that Caleb was limiting his volumes because babies base their intake on caloric needs being met, not volume. The addition of oatmeal had doubled the calories in Caleb’s bottles. )
We were so discouraged at this point because doctors now wanted to place a more permanent feeding tube, known as a g-tube. We felt we had no other choice if we were to ever to be released from the hospital with our son, so we consented to the surgery. A week later, we were discharged on a 24-hour continuous feeding regimen via pump and with his oral aversion already in full force once again.
At a follow-up, we were given permission to try bolus feeds. Caleb was still vomiting large amounts. At this point we were scouring the internet for answers to all of our questions regarding our son's health. We learned about the dependency that tube fed children have on their tubes and began frantically trying to figure out how to get him back to the bottle, at least during the day. We blindly attempted a tube wean on our own, but quit early due to fears and uncertainty of what we were doing. We knew we were onto something. We just needed the right guidance and support to do this safely.
Our son had been home approximately a month when our search led us to Rowena. We read through the testimonials and felt hope that someone might be able to help us. We answered the questionnaire Rowena sent us, and that very evening correspondence regarding Caleb began. Our goal was to get Caleb back to feeding orally only part of the time. We were getting nowhere with medical personnel as to what to do for Caleb and we had implemented our own feeding therapy at home, but still he mostly refused the bottle. We felt if we could have him eating orally at least part of the time that this would increase his chances of coming off the tube more easily through feeding therapy later. We were absolutely stunned and filled with encouragement, excitement and hope when Rowena told us that, based on the information we provided, she believed Caleb would be weaned completely from the tube within a couple of weeks.
Rowena has been a wealth of knowledge. I am a nurse myself and grew frustrated that we were not finding the answers or help we needed for Caleb in our medical system. Rowena held the keys that unlocked so much help and hope for our son. She explained to us about catch-down growth, overfeeding, how thickened feeds using oatmeal hindered Caleb's eating, why Caleb failed his feeding trial in the NICU, and much more. Everything she taught us made such perfect sense that we initiated the plan immediately. By the end of our 3rd day, Caleb had taken a bottle and kept it down. The next day he took every feeding. Volumes slowly rose as he took off on his own. The reflux/vomiting ceased completely and we never used the tube again after that 3rd day. His g-tube was removed 4 weeks after beginning Rowena's plan.
Caleb is currently sustaining himself 100% via oral feeds and growing at a healthy rate. There were several moments of high anxiety and uncertainty and Rowena was always available, compassionate, and supportive. Her knowledge and compassion are truly a gift to many families searching for answers and I truly cannot recommend her enough. If you are having doubts, I would encourage you to reach out. We too had doubts, and Rowena definitely came through. She was able to help our son from the other side of the world when doctors here had no idea how to handle a case like his.
Rowena was the key to getting Caleb off of the tube and was a turning point in our son's health. As a medical professional myself I would recommend her wholeheartedly again and again. Its one of the best decisions my husband and I have ever made for our children and we are so thankful we did.
We contacted Rowena about our 2 month old daughter when we were at our breaking point… Since birth, our daughter Hadley had failed to stay on the growth trajectory that doctors wanted her on. She ate less than their recommended amounts and fussed violently when we tried to make her eat more than she wanted. Because of her dropping in growth percentiles, we were referred by our pediatrician to see teams of specialists. Here is the history:
Birth – 8 lb 15 oz. No complications or physical problems.
2 weeks – She was back at her birth weight, but not easting more than 1-2 ounces per feeding (Breatfed). We were referred to GI specialist. In the meantime, we started offering bottles every 30-60 minutes to our baby per doctors recommendations. She ate more, but often while screaming/crying.
2-4 weeks – The GI specialist diagnosed Hadley with Reflux. We went on 3-4 different reflux meds, increasing in potency every time. We continued offering food 20-40 times/day, often times making Hadley more angry. No improvement in eating behavior and gaining weight very, very slowly.
3 weeks – Hospitalized for a night per the GI specialist recommendation. They studied her eating behavior. Thought perhaps Hadley was allergic to mother’s milk and switched to Hypo Allergenic Formula (Elecare).
4-5 weeks – Referred to various feeding teams who studied Hadley. They found nothing wrong and said to continue meds and Hadley may “grow out of it”.
5 weeks – Hospitalized again due to fear of dehydration. We stayed at the hospital for 4 nights. Hadley continued to scream when being fed. A feeding tube was inserted to help her get the recommended ounces.
6 weeks - Had a tongue & lip tie procedure done on Hadley. A new doctor we saw thought this was leading to swallowing/eating problems and poor weight gain.
5-7 weeks – Put through awful set of stretching exercises after the tongue & lip tie procedure. Also continuing to give Hadley 3-5 medicines per day, all orally. Hadley developed such a fear of things going near her mouth that she screamed violently even when seeing the bottle or being put in a feeding position.
8 weeks – Contacted Rowena. She diagnosed her with a behavioral feeding aversion and put us on a plan to re-condition Hadley.
8-9 weeks (during Rowena’s plan) – The plan is a HUGE leap of faith…and we were skeptical. Her intake dropped very low for the first couple days…and we panicked. However by day 3-4, Hadley was starting to accept more and more food. By the end of week 1 she was taking in close to the required amount and gaining 1 oz/day. By the end of week 2, we were so confident in her eating that we started working on her sleeping problems.
Today: She is 3 months old and a COMPLETELY new baby. Eating, Happy, Sleeping Well! We dropped every medication she was on, threw out the feeding tubes, and stopped pressuring her to eat! Rowena was an absolute gift from God!
We are so very thankful we found Rowena. Our daughter was born at 28 weeks and we had spent 10 months with an NG tube and doctors pressing us to move to a gtube. I knew in my heart my daughter could eat if just given a chance. I had spent tons of time researching options and we had hours and hours of speech therapy with little to no progress. I didn't know if Rowena could help but I knew it was worth a try.
After a virtual meeting with Rowena, I knew we were on the right track and we dove in. Rowena put together a program for us to follow and coached us through each step. I was worried the first few days as my daughter was not eating much but Rowena was right there to answer any questions and with encouragement. By the end of the first week, my daughter was up to 50% orally eating! We were so pleased and by the end of the second she was eating enough for us to pull the tube and she's never looked back!!!
We are so grateful for Rowena providing us the path to get to a happy healthy self eater. Thank you so much, Rowena!
We started having bottle feeding issues with Evelyn shortly after I was unable to breastfeed at 8 weeks. Evelyn would not drink despite going hours without feeding. We discovered Evelyn would feed in a sleepy state so we would dream feed her every single feed. It was such an anxious time in our household. We were always so scared of waking Evelyn up as she wouldn't take her feed. I was petrified she would lose weight. My 3 year old was being told constantly to be quiet so he wouldn't wake his sister.
At 4 months of age Evelyn starting refusing dream feeds. I was a mess, the household was under such horrible pressure. The saddest part of all of this is we had a very similar situation with my son. I was petrified we were going down the same path. Life was stressful and becoming unbearable. I googled and googled and googled trying to find an answer. I came across Rowena website and contacted her straight away. I spoke to Rowena after completing a detailed list of questions. She confirmed my fear of Evelyn's bottle aversion. I couldn't believe both my children had these issues. I had sought so much help and spent so much time and money with my son from various professionals and no one was able to help. Rowena explained that Evelyn's aversion was due to pressure to feed. Unbeknown to me, the constant offering of the bottle had created a bottle aversion. My children were sensitive to being offered over and over again. All I wanted was the best for them but I had placed too much pressure on them to have the recommended daily intake of milk. I never allowed them to take what they wanted. Rowena emailed through a plan almost immediately after our initial consultation. We implemented the plan the very next day.
The first couple of days were hard but I was prepared to follow through with it - after all I didn't have any other options and life was terrible. Rowena was such fantastic support and I felt confident in her advice. By day 4 Evelyn was taking bottles awake and "feeding life" only improved from there. There were good days and bad days but Rowena was always there to help. We reviewed the plan once or twice as Evelyn was/is extremely sensitive to pressure.
Months down the track Evelyn's feeding has gone up and down but only due to sickness and teething, not aversion. I cannot explain the relief and gratitude I have for Rowena. She has allowed me to enjoy my baby and not stress about feeding. Our household is harmonious. I only wish I had found her with my son.
My husband and I met Rowena in the middle of our feeding-aversion crisis, and she helped us turn our lives around. We cannot be more thrilled to be writing this testimonial.
We have a baby girl who is almost all formula-fed due to various lactation problems. Both my husband and I were incredibly focused on breast-feeding, so when we were unable to breastfeed, we didn't know what to do. There was practically no guidance or help about formula feeding out there. Everybody seemed to think or insinuate that formula feeding is simply putting a bottle into a baby's mouth, and voilà, you are done.
We didn't even know how much formula our baby would need, so we started asking our doctor, a lactation consultant, and various other sources about formula feeding guidelines. The response we got was that we should be feeding her 2-3oz formula per pound of her weight. She is a big baby (95th percentile in weight) so, we were told she would eat on the upper end of this guideline. Given this advice we tried to feed our baby whenever she gave hunger cues (or what we thought were hunger cues) and as much as possible, because we "needed" to get her to the suggested range of formula levels. Pretty soon we were obsesses with every little ounce she was taking in and whenever she wasn't getting "enough" formula we were trying our best to get her to drink more.
In the meantime, during almost every feeding our girl was squirming, arching her back, shaking her head, acting like she wants to leave the bottle. But since she continued to suck during all of these motions, we interpreted these as her having gas pains but still wanting to drink. This meant that we got even better at keeping the bottle in her mouth, despite her crazy gymnastic moves. We now realize that she was continuing to suck when we pressured her to eat simply due to her sucking reflex. The rest of her body was telling us she was being overfed, but we interpreted her discomfort with overfeeding as signs of additional hunger --- which led us to pressure her to eat even more.
When our baby was almost 8 weeks old, everything collapsed unexpectedly. Our girl started not to take the bottle. More than that, she started to scream whenever she saw the bottle. At some point, she was screaming bloody murder when she saw the nursing chair where we used to feed her. My husband and I were freaked out by all of this and started looking for any kind of help we could get. We got an appointment with our doctor, another appointment with a feeding consultant, and my husband somehow managed to get an appointment with Rowena.
Our appointment with the doctor was worse than useless, because she actually prescribed us acid reflux medicine that turned out our daughter did not need. Our appointment with the feeding consultant was useless and got us to focus on the wrong thing (we were told our baby is offended by the bottles we are using). Finally, we talked with Rowena and at the end of our Skype call, both my husband and I looked at each other and said Rowena is absolutely right. In the first minute of our conversation, Rowena guessed that our doctor would tell us to start on acid reflux medication (which she did!) and that in her opinion we should reconsider because based on what we described her, Talya had no signs of acid reflux. In the end, she was absolutely right.
Before our call with Rowena, we answered a 100-question survey, giving her incredibly detailed description of our situation. We didn't know if she would even read all of those things. During the Skype call it became very clear not only she had read them all but also she had already developed a treatment plan completely tailored for Talya. It was such a major contrast relative to our own pediatrician who didn't even want to hear us out the moment she heard the words "our baby is arching her back".
For the next two weeks we worked with Rowena to get our baby through her feeding aversion and start enjoying feeding again. During this process, Rowena also discovered that she wasn't quite sleeping properly. Since her birth, she was almost never seeping during the day. Her naps were no longer than 20-25min, which was incredibly exhausting. We were spending 40-50min to put her to sleep and 20min later she would be up. In response to this we decided to work with her to get our baby to sleep independently, so that she can self-regulate her sleeps. Rowena encouraged us to try the sleep adjustment on our own, but we knew that having her continued support would be very important for us.
Right now our baby is 13 weeks old. The last week has been one of the best weeks she has ever had in her life. She eats so well, only as much as she wants, and whenever she wants. Furthermore, her sleeping has improved beyond belief. She falls asleep by herself within 10min of us putting her into her crib. She takes long day-time naps as well as sleeping great at night. If I were reading these written by someone else, I would hardly believe them. However, going through this myself, I know that Rowena's methods work. Rowena was the only source of the advice we needed, and we would have suffered so much if we had not discovered her. If we decide to have another child and have any kind of Child Health issues with him/her, we would call her in a heartbeat!
We had a range of feeding issues which started when by son was born, including a tongue tie and attachment issues which contributed to feeding being a challenging experience for us both.
At 3 months he refused the breast completely and bottle feeding was becoming increasingly difficult. It was taking over 45 minutes each feed, and we would have to feed him when he was sleepy or swaddled, distracting him and feeding while walking around the house. This was an extremely stressful time for us, as he was not putting on much weight and was not feeding close to enough for his age and weight. I dreaded each feed and worried constantly about his development. We sought help from many health professionals but none of the suggested strategies worked for very long and did not address the underlying behavioural issues.
I found Rowenas website after searching desperately for solutions to our son's feeding issues. After reading the testimonials on her website I couldn't believe there were so many other parents going through the same thing and I felt hope for the first time in a long time that we might be able to get help that would work.
I contacted Rowena and she replied straight away. Although she was busy writing a book she kindly offered to help knowing how desperate I was. She developed a detailed plan for us and talked me through each part of it. I was nervous to start but I knew we had nothing to lose. Rowena was very supportive and responsive throughout the whole process. She replied to all my emails quickly, providing reassurance and advice on our progress and any issues we were having. I felt very supported through the whole process.
I can't thank Rowena enough for her help. Her approach has worked really well for us. My son now feeds well, he is relaxed and feeds a good amount for his age. Feeds now take 10 minutes. e is putting on weight and overall we are all so much happier. My anxiety has reduced and we can now enjoy our son and get out and about much more. It really has changed our lives, thank you so much Rowena. I strongly recommend getting in touch with Rowena if you need help with feeding issues.
My daughter Emily was born with Bilateral Paralyzed vocal cords. At three weeks old my husband and I received the news from all her doctors that she would require a tracheotomy to help her breath and allow her to be a baby. We were scared and terrified as any new parents would be. A few weeks later she also was required to have g tube. She had severe acid reflux and with her tracheotomy doctors informed us the g tube would be best for her to give her food and nutrition. I continued to work with Occupational therapy and the doctors from our hospital to get her to drink a bottle. Then she turned 6 months and it was time for solids they gave us the ok to proceed with giving her solids but she never really ate enough. Her first birthday had arrived and she was doing amazing. In her first year she hit all the developmental mile stones, she was crawling and almost walked with her twin sister on her first birthday. But there was one thing missing, her eating. Although she was eating she still required to have boluses through her g tube every day. I tried everything and continued to meet with doctors and occupational therapy. It was a consistent battle and she was not gaining weight. Doctors told me I should wait till she is the right weight before doing any g tube weaning. They informed me Emily is a picky eater and I should continue to try all foods. But as a mother I felt in my gut she deserved a chance to wean her off the g tube. Then Rowena my saving grace came into the picture. I spoke with Rowena and instantly knew I was in the right hands. We started right out of the gates cut her feedings in half!! And I said in half?! She said yes, it will be ok and so I did. Within in 1 week Emily was eating everything I placed on her tray. So we continued week by week. After three weeks Emily was eating and drinking 100% orally. The boluses were over and out of our lives. Within 3 months Emily’s weight had jumped from 15.4 to 19 pounds!! She eats more than her twin sister and still has a tracheotomy. I can never thank Rowena enough for all her support and changing our lives. Rowena was so helpful, encouraging and available to any questions I needed. We spent our first vacation as a family not tied to boluses or night time feedings and it was the best vacation ever! Thank you for every thing Rowena!
Things went well for the first 2-3 months of our daughter’s life. H seemed to be getting closer to sleeping through the night, and was gaining weight at a reasonable rate, although she wasn't keeping up with her birth percentile. When she had her 4 month check-up, we realized that she had dropped below the 0 percentile line for her weight. That's when things started to get really stressful. We began to worry about her growth and whether or not it was a real problem. I continued to nurse her like I had been, but she started to wake more and more frequently at night and had definitely regressed in sleep. She seemed to want to eat at a newborn pace, not a 4-month old baby pace. From age 4-6 months, she continued to stay right at the 0 percentile for her weight, despite adding in 1-3 meals of baby cereal a day and continued night time feedings.
The doctor recommended that we switch to bottle feeding so that we could accurately monitor how much food she was actually taking in. We started the bottle transition right after she turned 6 months old. She seemed to get the hang of it by the third day and was taking in a good amount of milk. I continued to feed her before her naps because that is when she seemed most receptive to accepting a bottle (she was sleepy/drowsy). For the first 10 days, she was doing really well. She still woke during the night to eat some so we were getting closer to 27-30oz per day at the beginning. At her weight check appointment on 10 days later, we found she had gained 13 oz in just 10 days!! I was so happy.
Then, just two days after this successful appointment, she became noticeably more fussy at the bottle. It was extremely frustrating because I thought we had been doing so well. She continued to not be very receptive of her bottles, although most of the time she would eventually latch on and eat (but not always very well). That's when I started to be suspicious of silent reflux, because it seemed to me that she displayed quite a few of the symptoms. The doctor prescribed us reflux meds and we began those. They seemed to help a bit at first, which I was glad of. But, shortly after, she started refusing to take a bottle in her room, where she always had eaten her bottles before. If I went into my room, or other quiet rooms, however, she would take it. Over the next few days I noticed that she seemed to not want to take in as much milk per feed. Sometimes just 2-4 oz, when it was normally closer to 5 oz. That is when I started to "top her off" after she had fallen asleep. Pretty much every time this worked. I assumed that her not drinking as well was due to some mild congestion that she was having, and that after a few days I would stop topping her off in her sleep, she'd be more receptive to taking her bottle, and she'd get back to "normal."
Things just got worse. I was feeding her more and more in her sleep after she wouldn't take much while she was awake. Finally, after about 1 week of “topping off”, she wouldn't take the bottle at all while awake before her naps, like we'd always done. I started resorting to "sleep-feeding" exclusively. I stopped even offering her bottle while she was awake because all she would do was cry. I would wait until she had fallen asleep for 5-10 minutes, go back in, pick her up, and stick a bottle in her mouth (and prayed that she would drink in her sleep without waking up). You can imagine how stressful this was! I would feed her during each of her naps, and also have to set my alarm to wake up before I thought she would in the morning so that I could get her to eat before we started the day. This continued on for a whole week…I felt depressed, discouraged, chained to my house, and unable to give the proper attention to my toddler. And, I sensed that if I didn’t start to do something about it she would get inevitably start getting more and more aware of her sleep feeds as she got older and even refuse those.
The day after I started sleep-feeding, I reluctantly started googling to see if I could find anything about why H may be refusing her bottles that I hadn’t already thought of. That is when I found Rowena’s babycareadvice.com website – and I’m SO glad that I did! I have to admit that I was skeptical at first, but the article over Feeding Aversions described EXACTLY the behavior that both H and I were exhibiting/feeling. I couldn’t believe it! Finally, something that explained in detail what we were going through and gave a logical, non-medical cause for it. After some thought and discussion, we decided to arrange a consultation with Rowena. I have nothing but wonderful things to say about it! It was both affordable and extremely comprehensive. Rowena responded promptly and courteously to every email and was very patient and informative during our Skype session. She gave us a detailed feeding plan specific to H’s needs, and suggested that we try it on our own for a day or two before seeking more support from her team. As my good friend said, “she’s like a fairy godmother!”
Since H was an older baby (7 months), I braced myself for a big fight the morning that we started – but it went AMAZINGLY well!! On day one, she took in 25oz, which is more than I got on some of the days that I was sleep-feeding her! She started off slow, but never did totally reject her bottle. She didn’t even lose any weight – she actually GAINED weight!! I was completely surprised, and extremely happy. It took a lot of effort on my part to just trust my baby, to know that she will take what she wants and needs (I like to be the one in control!). We continued on, and day after day, she kept doing very well. It was as if we never even had a problem! Amazing. She did GREAT for about 2 weeks…. Then she started teething. H started losing her appetite and regressed again with her feeds, but after some more reassurance from Rowena a few days later, we continued on with the feeding plan strategy and things got better again. Then, a couple weeks after that, H got sick with a fever and cold. This time though, I knew exactly how to handle it and just had to be patient with her feeds. She wasn’t taking in as much as I wanted and even lost some weight, but I stuck with Rowena’s feeding plan strategy. Since then, she has slowly worked her way back up to where she was before, both in quantity and by weight.
H at 9 months old is still a small baby (around the 5th percentile for weight), but she seems to be happy, content, and developmentally on track. And, most importantly, she seems to enjoy taking her bottles – no more sleep-feeding or fearing feeding tubes!! If you are struggling with a feeding aversion with a baby of any age, I HIGHLY recommend you try a consultation – there’s hardly anything to lose, and so much you can gain!! Rowena was a life-saver (and SANITY saver!!). She is professional, extremely knowledgeable about baby care issues, and very compassionate as well. I finally feel like things are back on track and am not worrying nearly as much as before (although I still have my moments!). If ever I have any baby care issues in the future or have friends in need, I know exactly who to contact. THANK YOU, Rowena!!!
Winona was born with a complex congenital heart defect called Tetralogy of Fallot. She started out nursing like a normal, healthy baby. After her first open-heart surgery, at 7 weeks of age, she began having trouble orally consuming the amount of calories the doctors’ claimed she needed to grow. They immediately placed an NG feeding tube to give her more volume. She was nursing or bottle feeding during the day and tube feeding at night. But each day she consumed less orally. The more we gave her, the worse she felt. We went through endless days of screaming, stomach cramps, gas and vomiting. We were told she probably had reflux, and she probably developed an intolerance to breastmilk or dairy, so much to my disappointment, I gave up nursing. That didn’t help. We spent weeks trying different feeding methods and different formulas and her oral aversion got worse. After being hospitalized for 33 days straight, 2 different reflux medications, 6 different formulas and GI consults, the doctors finally decided to replace the NG tube with an NJ tube, bypassing her stomach altogether. This would sustain her until she could grow large enough to handle the full heart repair that she needed.
Winona spent 4 months with the NJ tube, which can only be replaced under x-ray if it comes out, and must be run continuously. We didn’t leave the house all summer. She had to wear socks on her hands to keep from pulling out the tube because the closest hospital that could replace it was an hour and a half drive away. By the end of the 4 months Winona had gained more weight than she needed and was ready for her 3rd open-heart surgery, the full repair.
Following surgery, Winona was miraculously able to handle the NG tube feeding. But, even though her stomach was tolerating food, the doctors and speech therapists thought she would never drink from the bottle again and most likely she would need to have a G-tube surgically placed into her stomach until she could learn to eat solids orally. A few days after being sent home she began vomiting and losing weight. She went from bolus feeds to continuous feeds to no formula at all, only Pedialyte; her stomach wasn’t tolerating anything. The doctors were no help, they said give her a break and start again slowly until you reach the full volume. But this volume just made her sick. We were so frustrated and about to get admitted back to the hospital for more GI consults, when some friends recommended Rowena. They had gotten her help with their daughter and suggested we contact her.
After reading the testimonials on Rowena’s website, and finding connections between those stories and our own, we decided to try it. We paid for a consultation, filled out the detailed questionnaire and waited for the next step. Rowena was quick to respond. From the questionnaire she determined it was too soon after surgery to try and wean Winona from the tube. Rowena offered to give us our money back (the first sign that she was the type of person who really wanted to help us) and wait until she was cleared by the cardiologist, or, she offered to help us get Winona back to bolus feeds that she could handle and set the groundwork for the official tube wean. We moved forward with her advice. The biggest difference in her approach, versus our other doctors, was the volume. Rowena gave us a detailed plan using a lower volume that worked for Winona and instantly we could see it working! At the post-op appointment, the cardiologist was surprised to hear we were working with someone online. She didn’t advise us to stop, but she did want Winona to have more volume. Thankfully, we decided to stick with Rowena’s plan and began the tube weaning process.
We chose the support package and Rowena talked to us, via email, every day. After only 11 days, we pulled out Winona’s feeding tube! After using that tube for more than 8 of her 10 months of life, she was no longer dependent on it to feed! She was expressing hunger for the first time, drinking the bottle (that the doctors said she would never go back to) and eating solids! It took about two weeks following to really see a positive weight gain, but Rowena told us that could happen. Winona has been tube-free for over a month now, and she is so happy! Rowena has changed our lives! If you are reading this testimonial, trying to decide what to do for your baby…go for it! Rowena is great! The process is great! And most of all, the outcome is great! Thank you Rowena, you will always be remembered by our family!