Does your child have an ng-tube or g-tube so that they can get the calories and nutrients they need? Kids that have a feeding tube can learn to eat and ...
I’m sure there is at least one person out there who is dying to know how I did this. No? Oh, well. I’m going to write this anyway. Because it’s what I do. It’s what I live for. To help poor, unfortunate merfolk, like yourself! As I outlined in this post, due to a series of unfortunate events, Regina ended up being fully tube fed and retching and throwing up if any sort of nipple came near her mouth. Everyone assured me that…Continue Reading ››
Does your child have an ng-tube or g-tube so that they can get the calories and nutrients they need? Kids that have a feeding tube can learn to eat and ...
Come on in!
By: Tracy Huppert, MEd CCC-SLP, Spectrum Pediatrics, LLC Introduction Based on research, it has been found that infants and children born preterm and/or at-risk are often suffering from emotional, behavioral, and self-regulation disturbances. These disturbances include long-term feeding tube dependency, feeding disorders, and post-traumatic stress due to invasive, intensive medical care early in life. Pediatric […]
Heath was 14 months old and 21 lbs 14 oz (9.89 kilos) when he started his wean. He did wonderfully and is now an enthusiastic eater! Doing a home-based intensive wean along with two other Seattle families was one of...
Eating her hot dog bun like a boss. We've reached a point where we have become complacent with Olive's tube feeding. Yes, we are working on oral eating and going to feeding therapy and trying to make eating and cooking fun, but we are also happily tubing water and a ridiculously nutritious breakfast, lunch and dinner of real food each and every day. And Olive is thriving. She is happy and healthy and spunky as ever, growing along her own little curve. It feels safe and routine and comfortable, and it is essentially working for us right now. But complacency is a dangerous place. The longer we sit here, the harder it will ever be to have the guts to move forward. Hydrating post-parade. July 2015. We have tube fed Olive every day for the past 1,357 days. If we use an average of 4 boluses of water and 4 boluses of food each day (although it was often much more in the early days), that equals somewhere around 11,000 times as a conservative estimate. While a foreign and terrifying concept in the beginning, it is just a part of our day at this point, and I could do it with my eyes closed. Of course we had no choice but to adapt in the beginning. Around the time that Olive's tube was placed, she had diagnoses of chronic lung disease, retinopathy of prematurity (eye disease), hearing loss, anemia, a Grade 1 germinal matrix hemorrhage (bleeding in her brain), two hernias requiring surgical repair and failure to thrive. We were in a state of crisis, and we blindly trusted the advice of our then pediatrician and the attending doctor and gastroenterologist when Olive was admitted to the hospital for a nutritional assessment in June 2012. Post-Op September 2012. Second surgery to change her PEG to a Mic-Key. They assured us it would probably be very temporary, and she would start to take more and more orally. It was never framed as a choice, and we never even thought about fighting it. I regret that, and I blame myself for not researching it more and letting myself be blindsided by the fact that Olive stopped eating orally once she had her tube placed, a consequence that no medical professional ever told us was a possibility. I can't say for certain whether our decision would have been different of course, but in looking back it is so incredibly wrong that a medical team surgically placed this tube in our daughter's tummy without educating us on the potential side effects, sent us home with no real direction, and never provided us a single helpful resource let alone some kind of comprehensive plan for ever getting rid of this tube. There was a moment after she stopped eating that summer where I confronted her pediatrician about it and asked him whether he really thought the tube had been a good idea. Instead of taking any personal accountability, he actually said to me that it was our decision and really we are the only ones who could say that. Needless to say, that was the last time we ever saw him. They show you a doll, tell you it's easy and send you home. As devastating as it was when Olive stopped eating in July 2012, we put one foot in front of the other, picked up the pieces and moved on. There was no time to do anything other than accept it and adapt to it. We had so many other concerns that our only priority was providing her the nutrients she needed to grow and heal her lungs and her body so that she could someday thrive. I've spent the past four years learning from our mistakes by questioning everything we're told and finding people to help us and programs to help us and getting second opinions and tirelessly advocating for our child. As a result, we are in a really good place. All of Olive's health problems have resolved, and there is no medical reason why she needs a tube anymore. Her only remaining diagnosis is a vague "feeding disorder/oral aversion" as g-tube dependence is so rare in children that it is not even recognized as a medical diagnosis. I recently read somewhere that 1 in 20 children who have had a temporary tube placed become g-tube dependent, and we just happen to be in that unlucky 5%. Happily having a dance party. What does it mean to have a four year old that is g-tube dependent but otherwise healthy? It's odd. I never quite feel like we fit in. Recently when I took Juniper to a well baby checkup an unfamiliar nurse came back in to give her vaccinations and looked at me and said out of nowhere, "I didn't know you have a child with special needs." Her statement hung in the air for what seemed like an eternity before I blurted out my standard line of "oh well she doesn't eat really but she's otherwise healthy" when I realized she was talking about Olive. And as if that wasn't enough of a conversation, she followed it up with, "Well is she at least developmentally normal?" Say WHAT? I was so shocked by her asking that. What if she wasn't? Would that make her somehow less than? I don't know why this interaction bothered me so much, but I think it was the pity. I could feel it, especially when she ended our visit by saying she'd give me stickers to bring home to our special little girl. Barf. Double trouble. A few weeks later I took baby J to an ECFE class just to do something normal with her because I was never able to do anything like that with Olive. The very first class there was a group discussion about starting solids, and the teacher of course randomly asked me how solids went with my first child and if she was a good eater. So much for just being like everyone else as I quickly explained that Olive had medical problems and was tube fed, and the teacher said "oh, wonderful!" I know she didn't mean anything by that and had no idea what to say to me, but I can't seem to escape it. That same day the teacher supervising the sibling care that Olive attends asked me if Olive has an IEP through the school district after I told her about Olive's tube and what her limitations may be around snack time. I explained that she used to but that she aged out of special education at age three as tube dependence doesn't qualify as a disability. The teacher's response was to tell me that Olive must be just fine then and that I should feel lucky. Olive eating banana slices for the first time ever after Juniper tried them. I share all of this to give a little context to life with a tube fed child. It is isolating, and there are days where it feels like it touches every aspect of our lives. It is heartbreaking to see Olive falling farther and farther behind her peers. She is four and cannot consistently drink from an open cup. She prefers to use her tongue like a puppy dog. She doesn't partake in birthday treats at school because eating a cupcake is scary for her. And at six months old Junie has started to eat solids, and she shows instincts that Olive has never had. We put a puff in her mouth for the first time, and she started chewing. It took Olive two years to even attempt that. It is incredibly bittersweet and heartbreaking to see them sitting at the table together both learning to eat, knowing that in the not so distant future Junie's skills will surpass her older sister's. The best dad around. Tube feeding not only affects Olive, but it affects our entire family. Tube dependency can be absolutely overwhelming, and it is easy to let it affect family morale when we deal with it so many times a day. We can't sit down to a family meal without micromanaging what Olive is eating and reminding her to chew and move her food to her molars and to swallow and not to hold food in the front of her mouth and to take smaller bites. We're also supposed to encourage her to eat without actually saying you need to eat this. And we are supposed to do separate mouth exercises to build strength as her mouth fatigues easily. It's exhausting and stressful. And it is not sustainable long term. We need a change, which is why we have decided to pursue a tube wean on our own. Enjoying a "melt" at the malt shop. Thanks to a baby that hates to sleep by herself, I have had a disproportionate amount of time this winter to read and research things on my phone in the middle of the night. Many weeks ago I read this article in the Times, and it struck a chord with me. I agree with so much of it, and it gave me a renewed sense of purpose and direction in our tube feeding adventure. I decided that we need to actively try to wean Olive from her tube. I mentioned it in passing to her pediatrician, and she was nothing but supportive saying what do we have to lose? Of course I know what we have to lose. Morale. Confidence. Weight. The last of which would be the hardest as I feel like I have personally fought for every pound that Olive has put on over the years. But as hard as it will be, the time has come. Thankfully Olive finally has the skills to be physically able to eat enough calories to sustain herself. We have put in all the work for the past four years, but we have been missing a key piece. Hunger. We've never allowed her to feel hunger because we have been preoccupied with her growth and development and providing the calories and nutrition to achieve that. I'm the first to admit that it's not a good time to do a tube wean but also that it will never be a good time. So we are taking the leap. Testing out her new wheels. If expense wasn't a concern, we would be on a plane back to Virginia to participate in a formal tube weaning program. If we could attend the Encouragement Feeding Program now like we did in 2014, I think we would be wildly successful with all of Olive's progress. There is also another very popular and successful program in Virginia through Spectrum Pediatrics. However, the time, money, and energy that would go into planning for these trips and getting them approved by our insurance would be huge. There are other options available such as No Tube out of Austria and Markus Wilken's program that are done remotely via Skype, but these too are considerably costly. I am simultaneously looking into a feeding program at the University of Iowa, but we've decided our first step will be to try it on our own at home. As terrifying as that is. Pre-kindergarten screening already! Today we meet with Olive's doctor for a final weight check, and with the support of her, our feeding therapist, and our dietician, this weekend we plan to trial a rapid tube wean for Olive. This means that on Friday we will only tube breakfast and dinner. On Saturday we will only tube dinner, and on Sunday we will tube no meals. We will, of course, tube water and/or pedialyte if hydration becomes a concern. We are obviously not going to let her become dehydrated. This is huge for us. She is going to have her first true hunger trial. From what I have read, for a child that is unfamiliar with natural hunger cues and what that feels like, it can take anywhere from 7-14 days for it to kick in. The hard part will be waiting that out. The guidelines we have established with her doctor are that we are willing to let her lose 10% of her bodyweight. For her that is about two and a half pounds. I expect that she will turn into a surly child as she grapples with new feelings in her body. I expect that she will be unhappy and throw tantrums. I expect that she will be tired and cranky and not herself. I expect that she will eat mostly crap, and I will miss the food that we have been able to surreptitiously give her through the tube. I expect that it will be unbelievably stressful to watch this happen and hard to be encouraging and positive and to give her every ounce of love we have in us. But what scares me the most are the things that I haven't thought to expect. The three of us at home....per usual. We will of course be keeping track of her oral intake and hydration, which is tedious work. But we need to have a baseline knowledge of how much she is taking in. Her dietician has provided us with a target for hydration as well as calories. I know that we will not come anywhere close to the calories for at least the first few days if not longer, but hopefully she will at least be willing to drink water and milk throughout the day. I'd like to say that I will update our blog as we go, but the more likely scenario is that it will be all hands on deck all day long, especially with a baby in the mix. We will of course have frequent visits with her doctor, but the onus of whether or not this is successful is on us and me in particular as I spend the most time with Olive. I've talked myself into and out of this more times than I can count over the past few weeks, but barring illness, we are committed at this point. Our happy girl. We believe that Olive will eat on her own someday, and we want nothing more than for her to have the internal motivation to do so, which is why we have always used a gentle, child-centered approach. We do not force feed, and we do not believe in a behavioral modification model where we bribe her to eat. Our number one priority is her well-being so while we are willing to let her temporarily suffer in hopes that she will have long term success, we know that we can pick up where we left off with the tube feeding if it becomes too distressing for anyone involved and then try again in a few months or pursue another feeding program. Suffice it to say we are cautiously optimistic. Here's to uncharted territory and what lies ahead!
Does your child have an ng-tube or g-tube so that they can get the calories and nutrients they need? Kids that have a feeding tube can learn to eat and ...
Discharged from the NICU with a tube feed? A multidisciplinary follow-up team helps infants wean quickly and safely.
Introduction. Over the past 2 decades a dramatic increase of pediatric feeding via tube has been reported, which has resulted in a higher prevalence of feeding ...
Complex Child is an online monthly magazine about caring for a child with complex medical needs or a disability.
What should you be looking for in a feeding clinic? Learn from one family's experience with feeding clinics for children weaning from feeding tubes.
Does your child have an ng-tube or g-tube so that they can get the calories and nutrients they need? Kids that have a feeding tube can learn to eat and ...
Heath was 14 months old and 21 lbs 14 oz (9.89 kilos) when he started his wean. He did wonderfully and is now an enthusiastic eater! Doing a home-based intensive wean along with two other Seattle families was one of...
Tube feeding awareness and representation matters! A guide to learn about feeding tubes, break stigmas, and support those who need them.
Does your child have an ng-tube or g-tube so that they can get the calories and nutrients they need? Kids that have a feeding tube can learn to eat and ...
Come on in!
Does your child have an ng-tube or g-tube so that they can get the calories and nutrients they need? Kids that have a feeding tube can learn to eat and ...
18 hacks for life with a tube fed kid.
Read customer stories to see how the bFed System makes their tube feeding experience easier.
We’ve written this guide with our best practices on how to wean your baby— from when to start, different feeding techniques (baby-led weaning!) and a weaning chart included.
Okay, so bottle feeding for us was not easy to say the least! Rosie was tube fed for the first 11 days of her life, and having to transition from that was hard, and it just carried on being a nightmare from then on! Lots of problems arose, such as not finding a bottle she could drink from easily, to trapped wind. Wind was such a huge issue it seemed to take over our lives for months! However, before we knew it, Rosie started taking the bottle perfectly well and would be popping out burps no problem whilst crawling along the living room floor. Its crazy how one day without even realising you look back and its all changed suddenly! Great, we've aced the bottle. Now it was time for WEANING! To be honest, I never ever really thought about weaning whilst I was pregnant or in them early stages, I was so focused on that newborn stage it never really occurred to me that before long she would actually need proper food! We began weaning at four months. Gov guidelines are 6 months so please take that into account. Do what is right for you and your little one! However like I said, the bottle was always a struggle and so I felt she was more than ready to try some solids. I brought half of Tesco's 4m+ range, and of course, because we are all not perfect, without realising the first solid I gave her was some 6m+ banana yoghurt! However the two spoonful's she had seemed to go down nicely. Sometimes baby brain just gets you!! Stage one (4-6m +) First time in her highchair! She looked so small! From then on, for about a month or so she would mainly have rusks mixed with milk, baby rice and baby porridge. Quantities increased of what she would take but of course most of her nutrients were still coming from her formula. By 6 months she was having some baby porridge with her morning bottle and half a jar to a jar of baby dinner by tea time followed by some fruit for afters. The porridge was her fave and it is so cute to see them get so excited by food! Although then the messy stuff really begins! Stage Two (7m+) Happy egg face in a happy egg chair! At seven months we introduced lumps, at first she struggled with them but eventually she got used to it! I found that certain baby food brands would make their baby food a lot lumpier than others. So I would try to buy a nice mixture of different brands at first and see which your baby tends to prefer! For instance Hipp organic seemed a lot more mushy and runny, whereas some C&G jars seemed to have quite hard lumps of potato in! We also introduced a Sippy cup, which was somewhat okay but its took us until now really to find one that she liked (and wouldn't spill everywhere!) Which actually turned out to be a Poundland one, when I had been spending near on £5-7 on them! Rosie has always stuck to water, someone told me once don't introduce juice if they take the water because they then know no different! Nothing wrong with juice though if they don't like water, it gets them hydrated! Around 6-7 months we also introduced finger foods! I was quite scared about this, I would be reading in magazines and online about how to your 6 month old can eat some toast. I just saw how tiny she was and thought no way I would be so scared she would choke! However, we gradually introduced more finger food and she absolutely loved it!! There was a few gagging moments which scare you, but they soon get used to it! Again go with your instincts and only give them what they are ready to have. There is plenty out there online about no-no foods and when certain things are allowed to be introduced. Since she seemed to love the finger food so much, we gradually began a mix of spoon and BLW. Its worked so well for us to mix the both!! I was quite sceptical of BLW to say the least, and that is something that as I have grown as a Mum my mind has opened up too! We don't know it all at first and that's okay! At this point she was having around 500-600ml of milk a day too which is the recommended amount. I did find it quite hard during this stage to make sure she got the balance of milk and food and that one of them didn't fill her up too much that she would want the other!! Stage 3 (10m+) Err Mum, spoon but no food? By ten months, personally I found the weaning to be a lot easier. She was down to three bottles a day (A small bottle of milk with her lunch and morning/evening) She was also getting quite the pro at feeding herself various things. I found the best way for me was to give her breakfast - which was by now wheatbix, and I think on my next baby I would switch to 'adult cereal' a lot sooner and not use the expensive baby porridge for too long as its just basically the same thing! Then for lunch, I would like to give her a lunch she could feed herself! Crumpets, cheese, fruit that kind of thing. Then for dinner she would still happily be fed a baby meal with a spoon! I loved this as I knew she was getting all she needed but also had a lot of experience with feeding herself. Stage 4 (12m+) Yay! we made it to the last stage! One million baby wipes and countless stained clothes later we have made it to stage 4! At 12 months we dropped the lunch bottle and she is now just having a bottle either side of the day. Breakfast is cereal usually, which she does let us give her. Lunch is still finger food and the only thing that's really changed is that fact she screams now when we try and spoon feed her dinner! So dinner has developed now into more 'grown up' dinners which she can feed herself and we are currently in the process of teaching her how to use cutlery! I think one of the best pieces of advice I can give about weaning looking back is to not over-think too much. Sometimes it can always seem like there is someone doing one better, feeding their child beautiful organic creations. Its only food, and I think a lot of it is just down to common sense. We do let Rosie have treats, she loves nothing more than devouring a milky bar, however she doesn't have one every day and I know she gets all her good nutrients too. When we first started weaning and I would read certain things on it, or see things on TV about how we shouldn't give our babies the 'ready made' jars/pouches of food, and I would get mum guilt for using them. More power to you if you have the time and energy each day to cook from scratch each meal, everyone's circumstances are different and if that's what you wanna do then lovely, however in my reality it was just not going to work! I felt like she was getting her nutrients perfectly, some of the meals contained about 34930 different vegetables! Eventually she out grew them and now she has transitioned perfectly well to 'normal' food and adores eating a home made roast. Like everything in parenting, trust your gut about what they are ready for and what they like, and eventually it will all fall into place! Top Things to Remember: Things will get extremely messy, even more so if you are doing BLW. I used to stress watching all the mess being created but in time you get used to it (somewhat) THE MESS!! Don't compare! Other babies might happily eat vegetables all day long whilst your baby throws their cauliflower on the floor whilst throwing you a disgusted look like youre the worst mother in the world. Just keep trying and eventually you will find things they love! Also do NOT feel bad for giving your baby ready made meals if that's what works for you!! Rosie loved the C&G Meals! Bibs are your best friend. Rosie tried to started to yank them off your neck so I got some of the ones that gone on around their head. Perfect! I am also a big fan of the ones with arms, however she would start to just chew the big plastic ones with a crumb catcher at the bottom! Who knew there was so much that goes into bibs!? Safe to say I found it quite stressful going out to eat with Rosie when she began weaning. So much mess, and this time not in your home! And I'd have visions of her throwing her fish finger at a strangers head or screaming when it all finished. I just learnt to do a quick tidy up before you leave and stay calm (and have plenty of goodies/toys on hand) Eating out in IKEA! (If you're nervous about eating out with your LO try having lunch at IKEA the first time! (Its very baby friendly) A lot of clubs and websites (see my post on clubs to join) send out free information/coupons/freebies when it comes to weaning time! Ella's kitchen sent out a lovely weaning chart, and cow and gate sent a whole cookbook and money off coupons! Go with the flow! At the end of the day its food and its meant to be enjoyed, so try not to put too much pressure on yourself or your baby if you can help it! Don't feel guilty for letting them have the occasional treats or if they didn't eat a lot one day, it will all balance itself out! Treat time! Nothing like that first Ice Cream!!
Tube feeding puppies can be a daunting task that may become necessary for a breeder. Here, we aim to demystify tube feeding.
Introduction. Over the past 2 decades a dramatic increase of pediatric feeding via tube has been reported, which has resulted in a higher prevalence of feeding ...
Does your child have an ng-tube or g-tube so that they can get the calories and nutrients they need? Kids that have a feeding tube can learn to eat and ...
Function: Fewener feeding tube stander is designed to provide support and stability for individuals who require feeding tube support. It can also improve caregiver efficiency by providing a stable platform for tube feedings and facilitating easier transfers. Premium quality: The feeding tube stand is made of durable metal materials and consists of a base, an adjustable pole, and a hook or clamp to secure the feeding tube. The pole is adjustable and easy to clean, with smooth surfaces that can be wiped down with disinfectant. Applicable population: Feeding tube support is used in individuals who have difficulty swallowing, have a severe injury or illness that makes eating and drinking impossible, or have a medical condition that impairs their digestive system's ability to absorb nutrients. Types of tubes: Feeding tube stands are compatible with different types of feeding tubes, including nasogastric (NG), gastrojejunal (NJ), and gastrostomy (G) tubes. Ease of Assembly: The feeding pump stands are easy to assemble and disassemble, making them ideal for use in home care settings or during travel.
