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My Tubie Stories
Dusty-Mae's Story
Dusty-Mae was born premature and unable to breathe on her own, after a complicated pregnancy where my water broke at 25 weeks, I went on to carry her longer and deliver at 33 weeks.The first time we saw her she had a green feeding tube, but at that stage we had no idea which tube and wire was which.In the NICU we were taught to feed her with the tube and it became less scary.Eventually we got home but for unknown reasons she was not feeding well and allergic to everything, repeatedly for the first 18 months of her life she had tubes in her nose (nasogastric) and then just before age 2 she was changed to a permanent gastrostomy tube for enteral feeding.Dusty was not diagnosed until age 5, she has a rare chromosomal disorder meaning she has missing genes as well as extra genes where they don’t belong.If it wasn’t for her feeding tube she would not be alive today, as it took so long time to find her rare disease, no doctor could anticipate what would be wrong with Dusty or how to treat until it was happening.If there is one tip I have with enteral feeding, it’s that it’s just the same as eating and should be treated as such. Never be ashamed to tube feed or feel like it has to be hidden, at first I was so scared to pull out a syringe and feed lines in public, but if we can normalise this as “just another person having a meal”, it will lead to a much more accepting future, our kids today can grow up to know that different is not “scary”, “sad” or “bad”, we are all different in some way, and different is okay.When Dusty was 4, I myself became very sick, I suddenly lost a lot of weight and didn’t know what was happening. I had terrible pain in my stomach.My colon had stopped working completely and my upper digestive tract slowed down. I got diagnosed with gastroparesis.I myself ended up with a feeding tube. I had surgery to remove my colon and I now need both a gastrostomy tube like Dusty, and another tube often called a J tube, that feeds past my stomach.It’s still very strange to me that something that was once unfamiliar and scary is now such a big part of our life. My husband and son still have my daughter and I thanks to feeding tubes.I now dedicate my life to raising awareness around disabilities and illness.
Story contributed by Violet; February 2021
Photo credit: 123 Smile Photography
Fatima's Story
My Tubie Princess Fatima was born on the 4th September 2016. She was diagnosed in utero with a rare chromosomal disorder called Prader Willi Syndrome (PWS). Fatima had a nasal gastric tube since birth because she didn't know how to suck or swallow. She slept all the time and never woke up or cried for a feed. She could have gone all day without eating. This continued for the first 6 months.Fatima began speech therapy at only 4 days of life, while she was still in the nursery. Whenever I would try to encourage her to drink from a bottle her breathing rate would immediately increase, she'd tire very quickly and then fall asleep barely drinking anything. As soon as we'd make any progress Fatima would get sick, be admitted into hospital and by the time she recovered she had forgotten her skills and we would have to start all over again.By 7 months she achieved a major milestone, she put the bottle to her mouth for the first time and from then on, she very slowly began to improve.When Fatima was 11 months old she was diagnosed with severe failure to thrive weighing at a teeny tiny 4.65kg, not gaining any weight in over 4 months. By 12 months Fatima had the PEG inserted and since then her oral skills have improved so much, she was able to drink 3 bottles of 100mL orally during the day and the rest of her feeds were given to her via the tube overnight. Fatima is now 2 years and 4 months old and although she is still a failure to thrive baby she has made steady gains and now weighs 9kg.Fatima has challenged me in many ways and has taught me so many things and for that I am so grateful.
Story contributed by Reema; January 2019
Story Update February 2020:
My baby has come so far in one year. She now eats almost anything orally although she needs to be watched as she can scoff food down too fast without chewing thoroughly causing her to choke.Her feeding tube is now used for administering medication, fluids and for her overnight feeds to maintain her blood sugar levels.Having a feeding tube is nothing to be grossed out about nor is it something to be ashamed of. It is just another way of eating and for some people it is because of this they are still alive. Embrace your uniqueness!
You can follow their journey on Facebook: Baby Fatima- My Prader Willi Angel
You can follow their journey on Facebook: Baby Fatima- My Prader Willi Angel
Helen's Story
For Nurse Next Door client Helen, an award-winning teddy bear maker, a feeding tube has meant she can fulfil her greatest wish, to remain independent, in her own home, surrounded by her favourite teddies. For Helen, dysphagia, or difficulty swallowing, meant a feeding tube was the best way to help manage her nutritional needs to maintain her optimal health.Before her gastronomy tube, Helen’s dysphagia was creating concerns around her nutritional intake and weight loss. She managed her PEG tube at home for some time until there were some complications which lead to a hospital admission and potential extended stay to receive 24/7 nursing care. At this time with a strong desire to return home and live independently she and her family engaged the help of the Nurse Next Door care team. to manage her PEG tube, stoma site, medications and feeds at home. Helen continues to complete two of her feeds herself whilst her care team are now on hand every day for the other three feeds, providing assistance with medication administration, and stoma care as well.
Most importantly, the feeding tube is playing a key part in Helen’s independence. Knowing that her nutritional requirements are properly managed gives both Helen and her family the peace of mind that she has the energy to do the things she really loves doing – like gardening, shopping, enjoying her regular exercise routine and taking trips with her family. Her caregivers often join her on walks and take her out to get her nails done. All of which she can do on her own time.As with all home care clients, tube feeding doesn’t impact the time of day you can eat. Helen takes all her nutrition via a feeding tube – five PEG feeds per day, as well as her vital medication. Like anyone, she enjoys breakfast, morning tea, lunch, afternoon tea and dinner and she decides what times her feeds are to suit her personal preferences and routines. In terms of what she’s consuming, and keep in mind it will be different for everyone, Helen and her care team decided on Fortisip – a ready-to-drink, high energy, high protein, vitamin and mineral rich oral supplement that contains 300kcal and 18g protein per 125ml bottle. Basically a nutritional supplement designed for high impact in a small volume. She then supplements her tube feeds with foods that are easy to consume and allow her to enjoy the flavours, tastes and sensations of eating. Helen’s favourite is chocolate mousse. Her carers help her to prepare, cook and blend her food for the week and accompany her on her weekly grocery shop. Having oral feeds when you have a PEG is not uncommon, but of course, as with all people requiring a feeding tube, any food Helen takes orally is done so with medical approval, to ensure her health is a priority at all times.For Helen and her family, the choice has made all the difference in her ability to live independently at home. She and her care team have a plan in place should she need hospital attention but with management of her nutrition and her other care needs in hand, Helen is happy at home, surrounded by family, friends, and of course, all those teddies.
Thank you to Nurse Next Door and Helen for contributing this story, February 2020. You can read the blog post on Nurse Next Door website here.
Thank you to Nurse Next Door and Helen for contributing this story, February 2020. You can read the blog post on Nurse Next Door website here.
AnaVia's Story
I’m a G-Tube Baby!!
AnaVia was born with a diagnosis of trisomy 13. She had several complications during the month she spent in the NICU at Sunrise Hospital. She was unable to take formula so it was necessary to provide her breast milk daily which was provided through a feeding tube; she couldn’t feed from a bottle due to her becoming extremely tired in a short period of time. AnaVia was also diagnosed with Gastroesophageal reflux disease also known as GERD. She had to work with a speech therapist because she was unable to master the suck and swallow method. To make matters worse after being off of the breathing machine for just a couple of days she developed an E. coli infection which caused her to become reliant on the breathing machine and feeding tube once again. As she still continued to struggle with bottle feedings it was imperative for us to make the decision to have a G-Tube inserted in order for us to bring AnaVia home. Devastated with this decision, the staff was wonderful in educating us on the possible risks we could face if we were to be discharged without considering the G-tube procedure.
AnaVia is almost two now, and since leaving the NICU she has continued to maintain a healthy weight gain dispute her inability to take everything by mouth. This would not be possible had we not decided to make AnaVia a G-Tube baby.
Story contributed by Tashana; February 2020
Story contributed by Tashana; February 2020
Karter's Story
My son Karter was born in April 2018 at a healthy weight of 8lb 6oz (nearly 4kg). Karter was born with severe tongue and upper lip ties which were corrected at 4 weeks old. Karter was exclusively breastfed to begin with when we started running into troubles with him, we noticed he became irritable whilst feeding, wouldn't be interested and spent most of our breastfeeding journey latching and delatching on repeat.
Fast forward to 11 weeks of age, myself and Karter’s dad (Liam) noticed something wasn't quite right. Karter was barely putting on weight and even though he was always a baby who vomited it became more regular and could only be described as what looked like curdled milk, then the diarrhea started. Karter became lethargic, never interested in feeding and would be content to actually not feed at all, never cried and when he did, the sound was blood curdling. We tried bottles after bottles, formula after formula as the stresses took over, we noticed Karter tired easily whilst drinking and took almost NIL by bottle every time which then turned into bottle refusal all together. We then saw a paediatrician who after a week of following his weight admitted us under his care to undergo a wide range of tests after a 500gm weight loss within a week.
At 11 weeks old Karter weighed a small 5.2kg and then classed as a ‘failure to thrive’ baby. Karter had numerous blood tests, ultrasounds, x-rays you name it, Karter had it. It was the 29th of June when Karter initially had the nasogastric tube inserted to assist with feeding and hopefully to help get him to a stable and somewhat healthy weight. We spent a whole 4 weeks in hospital (2 separate occasions, 1st trip was 3 weeks, 2nd was 1 week) this resulted in two RFDS trips and being 8 hours away from our home town.
To this day Karter has thankfully been Nasogastric Tube free for about 3 months which has still been rather stressful and frustrating, and we still don’t have answers as to what was/is wrong, but he is a little pocket rocket, and nothing gets in his way.
Story contributed by Emma; November 2018
Story contributed by Emma; November 2018
Conor's Story
This is our boy Conor he is 4 in April and has had a feeding tube since 15 months. NG tube for 2 years which became a GJ in August 2017.Perfectly healthy until 15 months then one day randomly started vomiting up to 10 times a day and we were in hospital for 5 weeks. 2.5 years and many tests later we're still no closer to a diagnosis.All we know is that his gastrointestinal tract has delayed motility and consequently, he has lost all his oral eating skills and has forgotten how to chew and swallow food.Other than that, he's a healthy beautiful chatty kid and we look forward to him starting kindy this year!
Story contributed by Lisa; January 2018
Story contributed by Lisa; January 2018
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Imogen's Story
This is my Tubie Imogen, born January 2017. She started struggling with feeding from birth and was rapidly losing weight. When she was exactly 3 weeks old her NG tube went in. The doctors told me it would only be temporary, just until her feeding improved then it would come out. Well her feeding only got worse and by the time she was 12 weeks old, had stopped feeding orally completely. She continued with the NG until just before she was 8 months old and that's when she had her first gastrostomy for a PEG tube. She had that first PEG for 2 weeks then it dislodged so had emergency surgery for a second PEG. After a week we went for our follow up appointment with the surgeon and she noticed the PEG was moving and being pushed out by her body, especially when she vomited which is multiple times a day. So, the surgeon made the decision to do emergency surgery again to change the PEG to a button as she thought it might hold better in the stomach, she said it was only a matter of time before the PEG dislodged again. The next day Imogen had her third surgery to place her button and so far there's been no complications with the button (apart from some persistent granulation tissue). Imogen's had many diagnoses throughout her first year, but we still don't have all the answers. She has been diagnosed with severe GERD, gastroparesis, allergic colitis, severe oral aversion, dysphagia, suspected aspiration and sensory issues. Imogen does have an excessively high level of 4-hydroxyphenylacetate in her urine, which can be excreted in excess in short bowel and bacterial gut overgrowth syndromes however we do not have an official diagnosis. She has also been scoped for EoE which was negative however since she was elemental and on PPI for her scope it can't be ruled out completely yet. She had a rough first year, being 100% tube fed and vomiting constantly but was still quite happy most of the time.In April 2018, we had Imogen’s appointment with the geneticist to discuss the results from her microarray. She has a microdeletion on 17p12 and was diagnosed with a rare nerve disorder, Hereditary Neuropathy with liability to Pressure Palsies (HNPP). I had a microarray done myself and I have the same deletion and received the same diagnosis. It’s funny, I’ve had the symptoms for probably about 15 years but just was never diagnosed until now! I also had my son tested (Imogen’s brother Orlando) and he too shares the same deletion and nerve disorder. However this deletion does not explain any of Imogen’s other diagnoses, especially her issues with her digestive system. So far, she has been diagnosed with gastroparesis, severe reflux, dysphagia, severe oral aversion, dysmotility, global developmental delay, sensory processing disorder (we’re most likely looking at an ASD diagnosis in the future too) and now her nerve disorder and chromosome deletion. She has had further genetic testing done on a few different chromosomes that could explain some of these other conditions, however the results have all come back negative. She sees the geneticist again early 2019 when we will commence the process for whole exome sequencing.Imogen needs more surgery for tonsils and adenoids removal (this will be her fifth surgery) and she will also be scoped again while she’s under GA to test again for an EGID since that hasn’t completely been ruled out yet. She’s still 100% tube fed but will occasionally nibble on a Twistie if she’s not feeling too nauseous. She is struggling quite regularly with her GTube and her gastroenterologist has already warned me that we may be looking at a JTube sooner rather than later, unfortunately.In terms of her development, she’s hit so many milestones this year! She’s started walking, she can say about 10 words and I’ve started teaching her keyword signing which has helped with her communication tremendously. We are looking forward to what the next year will bring!! Story contributed by Melissa; November 2018
Shaz's Story
My name is Shaz.I got the flu when I was 11 and a half years old.The virus damaged my heart. Cardiomyopathy is the easiest to say.Then when I was 19 years old I had a horse accident and I'm now a quadriplegic.I had my seventh stroke in May 2012.I lost the ability to swallow and ended up with a nasal gastric tube.I had it for 22 months. Then in April 2014 I had a PEG put in and then April 2015 a mic-key button. Much better yippie.Then June 2018 I had to change my mic-key button to a GJ button because of complications from my surgery of having my bladder removed and part of my bowel. I have an urostomy now.My weight plummeted so I am now fed in my jejunum and my G port is my medication and extra water.I’m not upset having to be tube fed. It is my life line.All of us adults and children we are warriors and survivors.
Story contributed by Shaz; November 2018
Story contributed by Shaz; November 2018
Tube Feeding Blog
Read the Tube Feeding Blog on our ausEE website to follow the journey from when the decision was first made for Bella to have a feeding tube inserted when she was 7 years old to when it was removed 4 years later.
Bella is now 17-years-old and is no longer requiring an elemental formula. She is managing her eosinophilic oesophagitis with a combination of medication and diet restrictions due to her multiple food allergies.
Bella is now 17-years-old and is no longer requiring an elemental formula. She is managing her eosinophilic oesophagitis with a combination of medication and diet restrictions due to her multiple food allergies.