Hi. I’m Amber. I tend to define myself as a dual-purpose individual: mom and writer (here’s my portfolio). But like you I’m a lot of things. A baller (hoister of three-pointers), em dash enthusiast, neurodiversity advocate and neurodivergent human, wife to an electric-guitar-playing environmental engineer (Cody), sister to two wonderfully witty and strong women (Corinne and Emily), and oldest daughter to east-coast icons Barb (whom we lost too soon) and Greg.
My daughter, Stella, was born at 3:26 a.m. on August 17, 2008, a day ahead of schedule and after 32 hours of un-medicated labor. Notice how I don’t necessarily call it a “natural” birth. How could any baby’s birth be called “unnatural”? Besides, that much pain doesn’t feel “natural.” You know what? I should remove this from the “About” section, as it seems totally irrelevant now. A footnote at best. Borderline problematic in that it contributed to 48 hours without sleep before Stella’s arrival. But at the time it seemed super important and unhealthily so. There’s something interesting about the desperation I felt to do things “right.” It’s part of my story, so I’ll leave it in for now.
My husband and I were totally unprepared for what would follow her arrival. We’re told this is normal. Most of what followed could not be called “normal.” I’m now okay with it now but, man, did that acceptance take time.
Stella was breastfed for over two months. The plan was to do so for a full year. This dream crashed and burned, thanks to a lovely case of reflux and probable cow’s milk protein intolerance (or more accurately “my milk” intolerance), which caused Stella pain and led her to refuse to eat. Hypoallergenic formula and an NG tube followed. For a couple of tube-feeding months, it looked as though she would never resume normal, adequate eating. But thankfully, with some wonderful support that I was very fortunate to eventually find, I successfully weaned her from the tube.
Here, I documented our journey toward a tube-free, food-friendly Stella. There was a point when we said, “Phew! That feeding fiasco is over, and now typical, care-free family life can begin under a beautiful rainbow of blissed-out normality!” Not so much. There was always this sticky layer of stress and struggle binding us, though we could never grasp it. Cody and I knew we were doing something, maybe everything, wrong. Especially me.
Funnily enough, though no one was laughing, Stella’s eyes started crossing at around the 18-month mark. Later, we learned that her vision issues were accompanied by motor and sensory challenges that impact her development and regulation. Stella has done a lot of occupational, physical and vision therapy. She has been seen by a lot of experts, probably too many. I’ve consulted with people around the world in order to find the best path for Stella. At one point we flew to Cleveland to get an opinion and some exercises for Stella to do, and the highlight of the trip was seeing an owl outside the hotel. We now know Stella is wonderfully neurodivergent and some of those things we tried to do to help her were misguided and based on a societyal view of differences as deficits. I know better now and I’ve apologized to her, by the way.
I’ve been a writer for over 15 years. Mainly a copywriter. I’ve written ads, websites, boarding announcements, billboards, manifestos, you name it. I’ve also written about neurodiversity and worked as a neurodiversity hiring advocate to help eliminate the bias against social and learning differences that results in shockingly high unemployment rates for perfectly qualified autistic and otherwise neurodivergent job seekers.
I have aspirations. To complete a home renovation. To someday control my cowlicks. To get a borderline invasive facial treatment to treat my undereye bags. To find jeans that don’t stretch into Bieber’s version of Hammer Pants. And, as with everyone else I’ve ever met in my entire life, to write a book. Maybe? Or just an article. Or maybe just this blog. Or a napkin-based series of scribbles. I want to tell a story of awkwardly yet triumphantly disagreeing with the status quo. About being not-quite-neurotypical and making peace with that.
Questioning the status quo is how I helped Stella get past the feeding tube and it’s how we’ve navigated her strabismus and amblyopia and sensory issues and come to embrace autism. I welcome and seek out evidence-based approaches and research from pubmed.gov all the damn time. I LOVE VACCINES. When at first, no “experts” had real answers for Stella’s feeding or vision issues, I started asking a lot of questions. Our story is not just about shit hitting the fan, but about modern motherhood as I have experienced it—anxiety versus acceptance, and a strange mix of insecurity and bravery. Letting go while holding on.
I’m genuinely glad you stopped by. So much more has changed than has stayed remotely the same since this blog began. We got through some really challenging times and if you’re here during a tough time, know that you’ll reach the other side, too. Drop a line via email (firstname.lastname@example.org) or comment sometime. Thank you for your time, interest, and (hopefully perfectly aligned) eyeballs.
I’m Julie, the editor of “Mamapedia Voices”, and we feature guest bloggers on Mamapedia, a site for Moms all across the country. I’ve just found your blog, and would like to invite you write a piece which could be featured on our site.
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If you would like to participate, please take a look at Mamapedia Voices. Next, sign up here http://bit.ly/UTCGU to be on the blogger roster, and then you will be able to see the complete (and easy) instructions for submitting a piece for consideration.
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Hi Julie, thanks for the invitation. I checked out Mamapedia–pretty cool! I will certainly submit something soon. I’m so glad you like the blog!
I found your blog really helpful and motivating. Our little girls is 10 weeks old and her original need to be on the NG tube is now gone however a dependency has been built. It would be great to connect with you as she also had reflux (on losec and zantac now) and has bottle aversion. Guess what, she was born on the same day as Stella! I am hoping we can nail the weaning in the next few months but she is in the 10th perecentile of her weight so may need to wait a while. I have found that our practitioners don’t have a plan. I would really appreciated discussing the value of the Graz program with you.
Claire, how are things going? Did you get my email? I hope she is improving! Let’s talk soon.
No, I did not get your email. Would love to hear from you. I have not started the weaning yet but a very close to getting a plan set up as she has gone from drinking (half) to not doing anything and rejecting bottle. She is also on a hypo formula now but not sure she actually needs it. Would like to make it taste better but have been told not to mix it with anything. Did you find you had enough of a turnaroudn with MDS and support to go through the weaning? I am not sure whether to go with the Graz thing or not but do need a workable plan am a bit lost really!
Hang in there. She can turn it around. I think very highly of Graz. I will send you an email. I think you’d really benefit from their expertise and the much needed confidence and support. Try not to worry too much about the formula type right now–hypoallergenic was worth a shot anyway. You can do this! I’ll follow up in an email so we can discuss! Thinking of you!
Hey! I’m just poking around your blog and I like this page where you describe yourself! Go, Amber! So awesome, all the things you are up to. What is the update on Claire, above? You are really helping people with this info, Amber–I believe that is the highest calling of people with your talent! How wonderful that you can do that.
BTW, congrats also on the camera. It’s totally worth it, having a good one. Now you won’t miss all that cool stuff by a second or two!
Wow, thank you Phyllis! Claire successfully weaned her baby off the tube! HELL YEAH.
The camera is a lot of fun, though I still suck at it, pretty much. Doesn’t stop me from using it almost every day! A new hobby and a lot faster and less frustrating that our old camera! That said, I don’t think anything can top a good Polaroid pic, as you know….
Glad you stopped by!
Hi Amber! Stella is adorable. I just wanted to you know I think your blog is great and you are an amazing writer. It sounds like life is going so well for you and I am so happy! You should let me know when you are ever back in Natick area! Andrea
Greetings from South Africa. Was busy googling and found your site – what an inspiration!
Our little man, now almost 22 months, is due to go to Graz in October 2010 for his tube weaning programme and apart from being very excited we are very nervous as well.
Thanks for the laughs on the blog I just read, they got me grounded and ready for a tough but very needed time ahead as we tube wean Tayden.
Have a great day!
Brene, Rob & Tayden
Hey there! Thanks for stopping by! I will be sure to follow along on your site, which I just perused. WOW, Tayden is one tough little guy. And you are amazing parents. What a rollercoaster you’ve all been on. The stress must be unbearable at times but now there is light at the end of the tunnel! I’m so thrilled that you’ll be going to Graz. Were you able to raise the funds? Just remember, weaning is stressful even when it is going well. So hang on and know that you will be in excellent hands! Go Tayden!
Keep me posted if you can. Much love to you all from me and Stella.
I cannot explain the overwhelming sense of calm that I feel since I have found your website. I am a mother of a 3 year old boy, Antolin, who was born at 25 weeks. We have gone through so many things in such a short period so far… vents, pda, g-tube, nissen, glasses, laser eye surgery, many therapies, and the list goes on and on. At the age of 3, Antolin was shifted from one part of the system to another and they took from us many of our therapists and support system. I have been fighting the system ever since. I just think that someone, somehow, MUST try to see where the system starts to fail these children… and I refuse to let mine be one of them. Currently, I have added “Nutritionist” to my resume, and have started to wean Antolin off the G-Tube. Since I cannot get the help that we need, and there are barely any options to begin with, I decided to do it on my own. I did so much research, and came accross the Graz information and started my own “feeding clinic” at home. It made me so happy and even more confident to read your website and the literature that you posted. I truely feel that I am doing the right thing and there needs to be more information like this out there. Antolin is on day 8 and has not had a full tube feeding since Day 4! He is doing so great and we are so proud of him!
So… my point of writing to you is to say thank you for calming my nerves, and reminding me that we are not alone, and children such as my son can and will see brighter days ahead.
Jessica, thank you so much for your kind words and for the amazing spirit conveyed! I’m not saying I printed your comment out and put it on my fridge or anything, but I was tempted to. Could not agree with you more about the need to address the system’s failings when it comes to children needing therapy and other support. When you are able to get needed care, there is little follow-through (as in no weaning support) and no coordination of various therapies, interventions, etc. so it gets chaotic and incredibly stressful! It sounds like he is taking flight with eating and you deserve so much credit it’s ridiculous. Please keep me posted? I’d love to hear how weaning progresses, but I know your time is EXTREMELY limited! Your son is such a gift, but he is also so fortunate to have such a sharp, unwavering, devoted, all-around amazing mom. It’s just so easy for children to wind up with vastly reduced quality of life–it really is a battle isn’t it? That kind of vigilance is exhausting so I hope you have support and breaks. Doctors could learn a lot from you! Best wishes to you and Antolin!
It’s so great to find information about tube weanings. My son was born at 35 weeks and had a CCAM (cyst in his lung), was on ECMO, had the cyst resected on day 2 and spent a long time on a ventilatior, weaning off narcotics, etc and never got a chance to learn to eat. He had an NG in the hospital and in order to come home quicker I opted for the g tube and now that he will be 6 months old this month and home for 3 I am ready to get rid of this tube as soon as possible! I really dislike it. The medical team at the Children’s hospital doesn’t seem as gung ho about it with no real plan and is more set on him getting a certain volume everyday. The feeding therapist is a little more flexible. Either way i feel like he is definitely overfed, throws up a lot and doesn’t show an interest because we feed him whether he is hungry or not. We still get up at 4:30am to feed him to get the calories in. We are tired. I was looking at the netcoaching on Graz. I don’t know what it comes out to cost wise in US dollars, but I really need to try something soon because our quality of life isn’t the best right now and my mommy gut says he will eat if he had the opportunity to be hungry. I’d love to chat sometime!
Hello Marian! Have you visited the online forum “Tube Fed Kids Deserve to Eat”? Check it out, because there are many moms there in the process of weans or planning weans and tons of support. I chime in there now and then. I’m also happy to chat and will shoot you an email. It’s great that you are proactively thinking about weaning! I’d love to hear more. How is his weight? Does he ever take anything by mouth? etc. It’s disgusting how there is no exit plan for these kids. Quality of life plummets for the whole family and all most tell you to do is shove more formula down the tube. Hang in there, there IS a way out and I bet you’ll be AMAZED!
Your story is much appreciated and exactly what I need right now. I thank you for all your wisdom. My son was born with Hypoplastic Left Heart Syndrome. He is now 6mths old and is past his second surgery. They sent us home with him fully dependent on his feeding tube. Your words, “Its disgusting there is no exit plan” is exactly how I feel! I have been going absolutely crazy trying to to find information on weaning him off this tube. After his first surgery, he was able to wean on the tube just fine. This time his recovery was longer and my fear is that he has been on the tube too long.
My methods included cutting back on his intake through the tube and hoping he would take the bottle instead. This resulted in him losing 3oz and I was told by the nurse to not do that any longer. I believe that he has bottle aversion and is fully dependent on tube. Should I bother with OT and more doctors? I am not getting any answers. Any advice from you is SO appreciated. Im just lost.
Hello Julia. That does sound a little ridiculous–their freaking out over three ounces, especially if his weigh seems fine. That seems borderline insane. So many kids remain tube dependent due to this seriously twisted focus on small short-term numbers–at the expense of the BIG picture (quality of life and overall long-term health!). Find an OT and doctors who are willing to work with you on a weaning plan. Don’t settle for ones who won’t. Your child can eat, has done so in the past, and may just need to be reasonably hungry. Sure, often during weans there is a bit of weight loss, which is then made up for. I hope you can find some real support! Unfortunately you may have to stand up and DEMAND it because it’s so hard to find. It’s ridiculous and shameful that you have to be in this position of having no support, I’m so sorry! Please shoot me an email if I can help further!
I came across your blog via a post that Olga had left on Tube Fed Kids..This is a blessing. I finally am reading from other parents – that think what I think!! Your little Stella, is very similar to my Chase (from what I have read so far)..Still laughing from your Elecare post..:) I also did the “breastmilk poison” for several weeks. (and post dx, had the pleasure of donating a freezer full to the local landfill…grrrrrr!) .And basically was told – (after dealing with a “sceaming like he is on fire” baby for 22 hours a day)..that “it must be milk /soy intol”…per the obvious..blood in stools . Like you, this created feeding issues – severe oral adversion..still 10 months later. In additon, Chase also has swallowing/aspiration issues. We had NG most of life, recently went to Mickey button. I have been told to be patient, should resolve in a FEW YEARS! say it aint so! Still no swallowing of baby food, bottles are attempted with little or no success. BUT….obviously, he NEVER gets hungry! Chase feeds every 3 hours for 1 hour – I have no life, either does he at this rate! We have nursing in our house nearly every waking moment as well as various therapist. I look forward to reading the remainder of your blogs and following Stellas story. I hope one day, I can share my story and progress as well written as you 🙂 btw – my little Chase was almost a Stella 🙂 it was my girls name (Stacey and Stella…loved it!)
Thanks again and any tips that you or your readers can offer – send them my way.
Ive read a bit on Graz…I can’t afford it 😦 But I hope to try this approach when Chase starts gaining a bit more – not on the growth chart now!
Stacey and Chase
Hi at last people who understand! i had our beautifull daughter ruby in august 2011, normal delivery, great labour. after 11 hours of not wanting to feed they ran some tests to cut a long story short we were flown to starship hospital in auckland and ruby was diadnosed with Aortic stenosis hyperplastic left heart syndrome and had her first open heart surgery at five days old, between this opp and the next to be done at three months she would feed off me for several minutes then get to tired i would top up with ng tube then we would concentrate on top ups full or half? i got so upset not knowing how much to offer her i would express then give iot via bottle then i knew that she had her reccommended dose what she left in the bottle i would put down her ng tube, but between her norwood procedure the first opp and the bidirectional glen the second she had blood in her stools, they said she was allergic to my milk and like you stacey i had alot of breast milk that i worked so hard for in the bin. ruby went on formula and at the same time her health worsened needing to go on one litre of oxygen, at this stage she stopped taking anything orally, she would have these choking episodes and turn blue i would have to press the asssist button and they would suction ruby and shove more oxygen in her face, it was so traumatic to watch and every time it happened i wondered is she going to make it through, she did and after four and a half months in starship hospital we are home.
Ruby is nearly 7 months old still nasal gastric feed every 3 hours for 50 minutes i just dont understand why we dont have people in our own country more willing and able to get these children to feed orally, but i dont feel so alone now reading your stories, i am seriously considering the graz clinic in Austria, although very expensive i just want to give it a shot.
Kate and Ruby
Kate, thank you for your comment. So now Ruby is 9 months old. How are things today? I’ve heard many stories very similar to your Ruby’s–kids who’ve gone on to eat 100% orally and I wish the same for you. I share your frustration about the lack of knowledge and support regarding tube weaning in this (and many other) countries! Please update me if you can. I truly hope you’ve found the help you need and deserve.
I am in tears after reading your tube weaning posts! My little Annabel has been Ng tube fed for the past three months ( she is almost 1 year old). She has neuroblastoma cancer and no longer wants to eat since going through chemo.
Everyone thinks I’m nuts for being so worried about her not eating, but as you know it’s heartbreaking to watch your baby not want to eat. I have been doing a lot of tube weaning research, because I am eager to get her off the tube once we are done with the cancer treatment. I have been happy to find success stories from families going to Seattle Children’s (we live in Kirkland).
I swear I could have written some if your posts! Annabel has always been a poor eater due to reflux and milk protein issues. At three months old I switched from breast to Alimentum. I had to give up 15 GALLONS of breast milk I had pumped for her. I have always read into our pediatrician visits regarding weight, as A has never been on the growth chart. So, it was no surprise to me that A no longer gained weight and stopped eating during chemo.
I just want to thank you so much for posting everything you guys went through. I just can’t tell you enough how much I can relate to you. I got to the point with her eating that I had terrible anxiety that I almost couldn’t function. I certainly have a love/hate with the Ng tube, but I know with hard work we will get through this difficult time.
Your comment was so very powerful and I think of you regularly. How are you and Annabel doing? You seem like an amazing and super devoted mom. You have been through so much. I wish you and your sweet girl the very best, and if you’re feeling isolated, let me know if you want to grab coffee sometime.
Thank you so much for this blog. My first son had MSPI and I put him through hell, listening to our idiot pediatrician who kept ramming “breast is best” into my head. After 3 months I got a new doctor and saved my son some terrible pain by giving him Alimentum. When my twins came along, I knew what I was looking for and now have a little boy on Elecare. Its very helpful for me to get over my “mom guilt” reading about others who have lived the same situation as I have.
Hi Amber! You took the time, a long time ago, to comment on my blog. http://www.theobstacleshefaces.blogspot.com and I am such a on again off again blogger, that I didn’t realize it until now! 2 years later! Anyway, I am thrilled to have now found YOUR blog and plan to read all about your daughter and what you all have been through. I finally posted a new post on mine just yesterday and hope to become more active again! Anyway, I can’t wait to read about Stella and what you have done and are doing for her!
I’ve got a 3.5 yr old boy who’s been in glasses since 18 months and now going to start patching! =(
My baby’s glasses’ suppliers (totspecs uk) brought your blog to my attention.
Really feeling for you – through all your trials and joys! We have so many similarities in terms of birthing and subsequent challenges with regards to our darling children.
Going to keep reading your blog but noticed the last last one was post disney last year.
Hope you are keeping well and sane and Stella is doing good.
Pls let me know how you are getting on. Your blog is very helpful and therapeutic for me to read. Feel like I need to let you know that. How can I help you towards a duct-tape-less kitchen?!
Hi. We are currently in a wean now and have read your blog many times. That for the inspiration.
We are working on weaning now. Thanks for the inspiration.
Hi, Amber. I hope you still check these. I read some of your posts and I’m interested in the research done about the NG tube’s negative effects, My newborn son has been on an NG since birth on Jan 7th. He’s starting to show negative side effects outlined in a few articles I’ve read. But, I have yet to find something ‘official’ to throw at my doctors (who are largely dismissing my concerns). I’m about to go all Papa Bear on them and would like to have something to back up my concerns.
Hi Adam, so sorry. Just catching up on the blog now. What is the latest, Papa Bear? I can share the research I have if helpful. Let me know if you still need it. I hope things have improved!
Like so many others I want to say thank you for your blog! My son was also diagnosed FTT around 3 months and would simply not take in enough when he nursed. It has always been assumed to be silent reflux but nothing ever was certain. Long story short my son will be 2 on June 1st and has had an NG tube the entire time. When we first were presented with this option I did find your blog but I was overwhelmed by my infant’s weight loss I didn’t know what to do with all of the information. We live in the Seattle area and stayed at children’s for a week (sounds much like your experience) and we were pretty much on our own after that. Don’t get me wrong I think Seattle children’s is an amazing place for many kids but like you and many other moms have felt, there is just not enough awareness about tube fed kids. We opted out of a G tube for a variety of reasons and a huge one being that our nutritionist had called our pediatrician to try to convince me to stop breastfeeding my son when he wasn’t even a year old. There was no intolerance to milk and it was the only oral eating he would do independently but she was convinced my nursing held him back. Needless to say, I didn’t agree with some of the advice I was given which led my husband and I to resist some much of it after awhile. But back to the present, we are about to start a wean with the help of Markus Wilken via Skype and I am so grateful but extremely scared. This is what brought me back to your blog. I sit here reading your story crying, partly because I am 7 months pregnant but mostly because for the last two years I felt so alone in this. So thank you! Your blog has reminded me there are a lot of families out there like ours and there is hope for our wean. Even though I am terrified to be a mom to an eating child, I can find hope in your story (and so many others that seem to be connected through your blog).
Your blog has been a bright light on some very dark days.
After having twins at 32 weeks via emergency, spending five weeks in a NICU, NG feeding for three months and an additional 7 weeks in hospital for that baby to have open heart surgery, you have given me hope and faith all the way that the tube would and will go forever one day.
I developed an aversion myself to the tube and to feeding in general, the anxiety with every feed was gut retching in the end.
I would re read your blog over to confirm to myself I was completely normal in my circumstance, so thank you for sharing your families experience, you have helped ours through the NG feeding tunnel, forever greatful.
Hi Amber, thank you for your blog! We recently weaned our 5 month old from her feeding tube using net coaching through No Tube. I read the tube weaning section of your blog as we got started to help me know what to expect. I was so scared in the beginning because my baby was taking nothing by mouth when we started and was underweight–reading your stories and those of others who succeeded gave me courage to go for it and it’s been the best thing we could have done for our baby. I have been blogging about our experience at lillyswean.wordpress.com.
Thank you so much for your comment! I think you are a local superstar. I mentioned your story to a friend (without naming names obviously) and my friend knew of your story already through some site or blog associated with a local hospital (where she had her twins)! You are already helping others as well. I’ll be following along on your blog!
Your blog is great and Stella is adorable. Im interested in asking you a few questions about vision therapy if you have time. My daughter has esotropia and the Dr wants to do surgery soon. I am not convinced that surgery is the only option and have been researching things like a madwoman! If you have some time please email me and I will send you a few questions about your experience:)
What a coincidence, our daughter’s name is also Amber! and she has the same problem as Stella – difficulty feeding since 2 month old, and now at 4 month old she almost completely refuse to eat and we are on the verge of going to the tube. Can you please tell me how old was Stella when she went on the tube, and how old was she when she weaned? Did you try solid food and how did that work out for you guys?
Thank you very much!