Meikele Lee is the author of the children’s book “My Belly has two Buttons: A Tubie Story”. She is mother to three children, one of whom has a feeding tube. She became passionate about blogging when her youngest child’s oral aversions became life threatening. She used blogging to try and understand her son’s condition and how he can relate to others with or without a feeding tube, and to help educate the public about these life saving devices.
The team at Special Needs Book Review thanks Meikele for writing a guest post introducing her book and we look forward, in this interview, to learn more about her son and the lifesaving feeding tube he needs.
Lorna: Congratulations on your children’s book, My Belly has two Buttons: A Tubie Story! How soon after Nico was born did you notice there was something not going well with him? Please tell us what happened and why he needed a feeding tube.
<<Meikele Lee: Thank you for this opportunity Lorna,
Nico nursed like a champ after his original tongue tie release the morning after birth, and up to 5 months old gained POUNDS every month. By his 6 month check up, his weight gain was maybe 5 oz from his last and the doctor chalked it up to him having been sick since he had previously gained great. I instantly felt dread. Despite the doctor’s nonchalance because our middle child (Hosannah 4 yrs old now) had started struggling around that age in a similar pattern…Torticalis, check…Physical Therapy (PT) for hypotonia, check…refused/couldn’t use a bottle, check…
I knew deep down this was just the start. By his next appointment around 7 months we had attempted to introduce solid food, attempted being the key word! He was super defensive and would shove his tongue in the way so no food could get in, and then if it did he would gag so hard he turned purple. We discussed this again with our doctor and the pattern I saw emerging that was mirroring his sister. The doctor put me off again saying that even though he again hadn’t gained any weight he had at least gained length and we had time and that breastfeeding would sustain him.
From there all my worst fears were continuously brought to life as we played with textures and found that he would literally choke on anything other than Greek yogurt. No chunks or lumps at all or I would have a child literally choking who I needed to assist because he couldn’t get it out. This would happen 2-6 times a day between these two kids (Yes two kids who choked and no one believed it a problem!). It didn’t get better.
It became so “normal” but my twin sister became shocked when she saw it happen. We were just in survival mode all the while heavily monitoring both kids during feedings. My husband became afraid to feed my son ANYTHING because he wasn’t confident he could get it out in an emergency.
I was working two jobs to support us while still nursing my son 9-12 times a day because he demanded it. I knew he had to nurse because it was the only thing he didn’t choke on, and the only safe way to get him fluids.
We had tried so many bottles, cups and straws but he just couldn’t use them. By 1O months I had networked around our doctor with a speech therapist during our PT sessions and had her approval to force my doctor to give me a referral which he did. Our son finally had an eating/drinking evaluation.
The specialist’s exact words were, “I don’t know how you have kept these babies alive. This is really bad. I have never seen a mom who knows and can anticipate when a child will choke and these babies are lucky to have you!” I cried because for the first time someone “got it!” They understood how hard and exhausting it was and that there was a problem! We had an Ear, Nose, and Throat (ENT) referral for a severe posterior tongue tie that day to rule it out.
By a week later, when Nico was 11 months old, his doctor confirmed that Nico had “classic failure to thrive (FTT)”. However, because his iron level was good and all we were doing at home, he was not hospitalized. I still felt like a failure with him even saying ‘’FTT’’. He also told me, “Now we have the proof to justify me giving you those referrals, you did a good job mom.”
They rushed the ENT appointment because Nico was still 15.8lbs, same weight he had been at his 7 month check up. His frenulum was released and his eating got a little better, he was eating over 1000 calories by mouth and still nursing 9 times a day. We still had to be very careful and were easing into more textures because he was literally just learning to chew. He gained one clothing size and looked plump to us AND people who had seen him before. I went to his 15 month check up on October 14, 2015 positive we had turned a corner.
Our doctor had retired so it was our first meeting with a new one. We got Nico on the scale and…15lbs 12oz! I broke down, how was it possible? That day we were admitted for a “3 day calorie study” which turned into a 3 week hospital stay. His kidneys were in distress despite nursing so often and spooning him water in levels he could tolerate (around ¼ tsp or he would choke), and we still don’t know why the food he eats wasn’t packing on weight.
They tried so many interventions that he, by choice, became “nothing through the mouth” (NPO) and even refused to nurse. It was every parent’s worst nightmare. One individual at the hospital felt it was our fault despite the mountain of evidence to the contrary. So in the midst of an already stressful situation we were investigated by Child Protection Services (CPS). We were cleared, but it has left some lasting scars on me and my family. My oldest daughter deals with anxiety because of the things she heard people say about “not taking them away…” Now she hides when people come to the door and struggles with being away from us to the point she gets inconsolable. We are working through it.
Nico then sped through the NG (nasogastric tube) because his oral aversions got so bad so quick, and he tolerated the feed amount. His G-tube (gastronomy tube)/Nissen fundoplication(for severe silent reflux relief) surgery was four days later. We sped through training and they sent us home. By Halloween night we were home with our child and his new Feeding tube…our “new normal”.
I found the Facebook feeding tube support sites during this nightmare and it gave me such support hearing stories and having a place to go where they understood. We had never met anyone with a feeding tube before, and in our town have only met two others since.
Lorna: How old is your son, Nico, now. How is he doing? Does he get all his nutrients through the feeding tube? How is he followed by his health care professionals?
<<Meikele Lee: Nico is now 2 and will be 3 in June. He is doing great with weight and has for the first time hit 50%. He is a very active boy, VERY ACTIVE ha-ha! He is also a sweet natured boy who sometimes struggles to express appropriate emotion and needs Occupational Therapy (OT) help with heavy work to help us manage them. His speech is coming along at lightning speed and he is attempting long 4-5 word sentences. He eats by mouth during the day as much as he wants/needs and we give him water in a 60ml syringe to suck it out of. We found this by accident, and it’s the only thing he can “drink” from. He can only have 3ml at a time in it though or he will choke because after 1 or two sips he can’t control how it goes down his throat and 1 cup of water this way can take 2 hours to finish.
At night he is hooked up to his feeding tube with 500ml peptamin jr + 250ml h20 added with 100ml flushes on either end to start/finish. This runs at 65ml per hour until done. I say that because right now he has figured out how to stop and unhook his pump so sometimes we wake up in the night and the pump is off. The pump has not beeped so we had no clue, silly stinker.
We see the following:
- Gastroenterology every 3 months,
- Pedi every 6 months/as needed,
- PT every other Thursday,
- OT on opposite Thursday’s,
- Speech as needed.
We just saw a specialist in Seattle, WA in December. This Otolaryngology specialist said all his anatomy is normal and injected a gel into his airway to try and help the choking (it made it worse). Our next step is an upper and lower endoscopy this summer.
8:30 a.m. I come home from my graveyard job.
Unhook Nico from his feeding tube and flush, maybe clean up any mess he made if he got his med port open and “fed the bed” with his feed.
Make breakfast for my kids, and he does eat a little bit and insists on his “ringe please mama!” (his 60ml syringe with 3ml water at a time) and we do his “ringe” for about 30 minutes before he wants to play or until he begins choking and then we stop whether he likes it or not.
I do home school with my older 2 girls and Nico either sits with us and colors (or answers his sister’s homework for them lol he is a smart boy and catches on to sounds/numbers quickly) or he plays on his therapy trampoline/beanbag doing heavy work and “crashing” because he bonks his head on hard surfaces otherwise.
10-11 a.m. I lay down for a nap and Dad takes over…they build forts, watch magic school bus, play outside, play Minecraft together or watch dad build, etc I also work at a Salon on the weekend during the day so sometimes I am gone 9-5pm/11-5pm and Dad is in charge.
Noon – 1 p.m. they eat lunch and Nico is a very insistent eater, he likes to eat! His lunch could be a PB&J sandwich or cheese and cut up lunch meat with a Nutragrain bar. Then it’s nap and rest time for the kids…hopefully they sleep but not always.
2-3 p.m. I wake up from my nap and Nico immediately insists on his “ringe” or a snack. So we do that for another 30 minutes and do some Z-vibe work to desensitize his mouth by introducing a vibrating wand with a toothbrush looking end that is textured, and we do this because this helps us work toward him brushing his teeth and not screaming when we try. As well as him accepting new food textures or allowing things in or near his mouth as needed medically. He has sensory processing disorder. We also do other “gooey” texture sensory play with his hands or “wet” things like wiping down his high chair tray with a washcloth or baby wipe and wiping his own face and hands…another sensory experience he dislikes.
4-5 p.m. I make dinner and Nico runs around the house like a crazy thing with his sisters and Dad playing. Nico eats what we eat, but it’s usually cut up REALLY SMALL. My sister laughs when I cut up her kids food and says “you’re better than a food processor!” because I’ve had to be so careful.
There are only five foods so far that he can safely take his own bites of without us cutting up. Nutragrain bars, String cheese, PB&J sandwich, Fast food burgers with ketchup only, and Taco Bell Bean burrito…all other “whole” food has to be cut up because it’s too dense, crunchy, or tough to bite a piece off and he can’t regulate the necessary amount to chew a food to swallow safely based on how it feels in his mouth…we don’t know why. And of course we do more “ringe” or big sister Nevaeh (6 years old) helps him do it with Dad’s supervision that it’s not too much, and she loves helping.
6-7 p.m. I have to lay down again for a nap on the nights I work my Graveyard shift, if it’s one of my 3 “nights off” then we have a “jammie party” with the kids and watch movies together. Do bath/shower time.
8 p.m. This is the latest the kids lay down for bed unless a movie is long, Nico being the exception as getting him to lay down and sleep is difficult. He may play in the living room with us or do more Therapy jumping/crashing, do some more “ringe”, eat a snack etc.
10 p.m. We start getting Nico ready to hook up for the night, he gets frustrated because he knows he has to stay in his crib and so he may start trying to bonk his head/hit things or himself/throw stuff, but this is more intense if he hasn’t done his jumping and crashing play to satisfy the “need” to bonk and be physical. I usually hook his tube up to his mic-key button as I am headed to work unless it’s my night off then I hook him up fully. This takes about 10 minutes and we have had to resort to duct tape to keep the extension tube(short tube attached to the button) and Feed bag tubing together with a toddler.
***If you have a touchy stomach or gag skip this part***
Remember me saying “feed the bed”? That is the bane of feeding tube family existence, its messy, sticky, smelly (with gastric contents, formula/real food blend which isn’t always a good smell when not in the stomach, and ***sorry*** mucus/spit that are in the stomach) and LOTS of laundry plus bath time.
***ok it’s safe now***
So getting hooked up and staying that way is more desirable in one shot. We then put on a movie/TV show on Netflix for him because having a quiet room makes him NUTS! And then he will eventually lie down and sleep. He wakes up in the night lately so he definitely struggles with sleep.
Then we start over the next day!
Lorna: From reading about Nico and watching the videos you have made, it seems Nico might have his feeding tube longer than you had expected. What treatment or therapies do Tubies need on a day-to-day basis?
<<Meikele Lee: Yes, the Otolaryngologist in Seattle, WA after the evaluation and adding the gel to his larynx (voice box) said the feeding tube will probably be in until at least he is 6 years old. This is when all the body systems coordinate fully and he said it’s common in the “Tubie World” for things to turn around eating/drinking wise here. So it’s still a long term part of our life, but other’s don’t even get to hope of a future without their button so we are blessed.
I spelled out our daily therapy stuff in the “24 hours” questions, but mostly exercising his eating and drinking skills and challenging his oral motor function to aim higher is the most important. If they can make inch stones of progress in textures they can eat then it can open up a whole new group of “safe” foods or being able to drink from a cup/straw even a little so that they learn how to control it going down the throat. I was under the notion before my 2 youngest that this “just happened”, and my eyes have been opened to exactly how complex it really is and how many systems have to work in tandem not just in the mouth!
But no two “Tubie” kid’s treatment and therapy are the same, even if they have the same symptoms and diagnosis they may excel in one area that another may not or have another condition(s) that prevents them from physically being able to do them. It’s a tailor made process that all parents and carers learn to roll with, and once they succeed at one thing there is usually a more challenging skill to come.
Lorna: When a child with a feeding tube goes to school, what are the precautions that must be taken so that all goes well? What about going swimming or playing in team sports? In the thirty years that I taught in elementary schools, I have never had a child on a feeding tube.
<<Meikele Lee: Nico isn’t in school quite yet and we decided for his safety we will continue to home school. We even struggle with someone watching him so we can have a date night! And we have a great group of people who are very aware and safe with him, but it’s a lot of work when you have more than one child present.
My precautions would be a Safety belt, so that they could be around kids on the playground and equipment without risk of it getting snagged and pulled out on accident. This would also be necessary for playing team sports, and more equipment may be needed for padding and such depending on the sport.
They need a well stocked “emergency kit” that has multiple sizes of Foley catheters and an extra button, syringes for deflating/inflating the button balloon, Sterile jelly, gauze, barrier cream or antibiotic ointment as necessary, hand sanitizer, small container of water to fill balloon, and 2 sheets tagaderm (very sticky sheet of tape to cover the Foley and keep it in place in emergency)…This would all be for if the tube came out so that the stoma (opening for the button) stays open, in extreme cases a tube comes out and no one notices until it’s too late and it’s so tight that nothing will go in and another surgery is needed to insert a new gtube. The extra sizes of catheters are for if the hole is smaller than the button and that way you get something into it to stop it from getting that far, and you should still be able to hydrate and feed them through it in the mean time.
Next you need someone at school who is able to feed them and monitor the necessary schedule…not all schools are able to accommodate the “medical device” per health board standards even with a school nurse, and so a nurse of your own or yourself would need to come and feed them or deal with emergencies which baffles me and other Tubie families. But plain and simple a person who is willing to be trained in the care of our kids is so hard, and so school outside of the home for my son scares me as I have read and heard how “accidents” happen frequently or kids go without food all day when a substitute is there and it wasn’t communicated with the child’s parent to make other arrangements.
Swimming is actually a pretty easy thing for tubies. Not as much safety equipment, if any is needed. Nico can swim uncovered in a treated pool, bath tub, or the ocean. Lakes and rivers are another story and notoriously “dirty” and the ecosystem breeds micro-organisms that are able to breach the stoma and get into the child’s body and can make them ill. In this case a barrier of Tagaderm tape will keep it water tight and as long as you make sure it doesn’t wear off throughout the day and replace as needed then they are as safe as any other kid.
We know a lot of teachers who are unaware of these devices, and so this book has been used to help make the class and teacher more aware of what it’s for. This is exactly what I hoped and I love hearing from parents how they use the book to educate the non-tubie community.
Lorna: You have a web site and a Facebook page. What do you usually post about? Have you made presentations about caring for a Tubie child or to share your book?
<<Meikele Lee: The web site is brand new, and it’s kind of a mix of all. It’s going to be the landing site for books we are working on or planning so that everyone can look forward to it. Currently it has more information on the contributors, and a lot of personal pictures from Nico’s birth to present telling our story.
You can link to my blog from there also. In my blog I’ve written about Tubie care, Family events, Book events, and taking time to self-care as a parent in this world. I pre-plan some of my blog posts and other’s come as inspiration in the moment when I feel really passionate about a topic, and Feeding Tube Awareness week I used it to share my son’s story and about our support system on the themed topic days. I plan on continuing with this so stay tuned for more! Any topic suggestions are welcome and I will do my best.
Facebook is for sharing any ‘’breaking news’’ Tubie or book related. Allowing other Tubie families a landing zone where they can see what’s availabe for support, supplies, etc. I welcome those who sell tubie specific products to advertise on there and I share some of them on my own. We did a big promotion for ‘’Feeding Tube Awareness Week 2017 ‘’ and I made a video with these amazing kids, some with their copy of the book. And a drawing where we joined with ‘’Chasing Sadie ‘’ on etsy who makes the shirts with our book title on them. All were welcome and we even had some adult tubies join in. I get most of my testimonials from book customers sent to me there and I love it! I also share any reviews, articles, places we find the book at so it gives those sites foot traffic as well.
Lorna: What is on Meikele Lee’s To-Do list for the coming year? Will My Belly has two Buttons: A Tubie Story” be followed by other books?
<<Meikele Lee: I have some pretty lofty book marketing goals, and some of them I have set in motion and just waiting for the ball to roll back into my court. One was the Purple Dragonfly book Awards, and that is a competition for books published as self-published which mine falls under (I have a Publisher/publishing company, but they don’t print my book on their own). Winning this would give the book more weight with selling it in bigger book stores and help promote it on a broader scale so my fingers and toes are crossed. Wish us luck! I have a client at the Salon who is a local book editor and he told me, ‘’most books don’t even sell 200 copies… ‘’ I am proud to say that with the hard work so far we are well beyond that and I hope it continues. No matter what, I am proud of what I’ve been able to accomplish on this first book so the second hopefully will be even better!
Yes, you will see another book from us this year! That was another thing on my to-do list. Getting the manuscript done on my end. It’s currently with my amazing illustrator Rebecca Robertson (who happens to be my baby sister). It’s a Christmas book that I gave a little sneak peak of with my photo/meme ‘’Snowmen aren’t the only ones with buttons this Christmas ‘’ last year. I was absolutely in shock when it was viewed over 153,000 times and shared over 1000 in a week! So stay tuned and keep up with us on the Facebook page as I will be needing a book launch team, which is something new for this book. If anyone is interested please join our Newsletter on the website and I will let you know what is involved soon. I am hoping to have some ornaments made for this book, but they will be sold through the Facebook site or web site.
I am also working on a book for the siblings in this Tubie world, the ones who don’t have a tube. I recently interviewed my oldest daughter and asked her questions about what her life is like. Some of her answers I expected, others made me sad realizing the amount our life is DIFFERENT and still others couldn’t have made me and my husband more proud of the heart this little beauty has for her brother’s safety and others like him. She is so excited to have been involved and keeps asking, ‘’Mama! Are you done yet so we can read it! ‘’ I promised she would be the first one it was read to when I get done. Other than those two, I am researching and playing with some ideas so we shall see what comes.
Lorna : Thank you very much for a PDF copy of your book, your guest post, and now taking the time for this interview. All the best to you and your family! Please let us know if you write another book.
For more information on Eating/Swallowing Disorders
- Feeding Tube Awareness Foundation
- National Foundation of Swallowing Disorders
- Feeding Clinic of Los Angeles
- Kennedy Krieger Institute