Hi. I’m Amber. I tend to define myself as a dual-purpose individual: mom and writer. But I’m also a wife to an electric-guitar-playing environmental engineer (Cody), sister to two wonderfully witty and strong women, former basketball player (launcher of three-pointers), oldest daughter to a couple of hilarious east coasters, and an accomplished worrier.
Me, the mama
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.” (I’m tempted to remove this from the “About” section, as it seems totally irrelevant now. But at the time it seemed super important and worth sharing.)
My husband and I were totally unprepared for what would follow her arrival. We’re told this is normal.
Stella was breastfed for three 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 support, I successfully weaned her from the tube. She is now a cheese enthusiast, a “normal” eater, tall girl, and sweet but hotheaded three-year-old. For the details, lactose and all, read about how Stella went from the boob to the tube.
Here, I documented our journey toward a tube-free, food-friendly Stella. Funnily enough, though no one was laughing, Stella’s eyes started crossing at around the 18-month mark. Giving me more to worry and write about. I continue to post updates on how Stella is doing, with her glasses, eye patch, vision therapy, and in general, and the craziness of parenthood. The highs and lows. Screw-ups and blow-ups. Triumphs and tantrums. The big. The small. The screaming. As much as I can make time to share, and that all depends on how well Stella naps. Oh wait–she doesn’t nap anymore. Crap!
You’ll also notice some written attempts at finding peace. Because I worry too much about Stella. What is “too much”? Let’s just say you know it when you feel it–in your clenched stomach.
My writer self
I’ve been a writer for over ten years. Mainly a copywriter. Before Stella was born, I was a Senior Copywriter at an ad agency. Very Peggy-Olson-ish, except my pregnancy ended on a more positive note and I told Cody about it right away. The job was a lot of fun, especially on days when the Nerf balls and screeching monkeys soaring over my desk didn’t make contact with my face. I saved an account once. Won an award. I’m good at what I do. I can write in just about any voice. I put a lot of soul into my copy, darn it! I really enjoy the work, and it shows–especially when I get to write about good causes, running shoes, bagels, and other favorites. (I was lucky enough to spend the first few years of my career doing writing and marketing for GreaterGood.com, operators of The Hunger Site, The Breast Cancer Site, and a host of others. It’s for real, people!)
I’m trendy. Not in any way remotely related to my un-accessorized, minimally groomed appearance, but because I’m a “work-at-home mom.” I hang out with Stella full-time and fit in freelance work whenever I can. I try not to go insane. I’ve dabbled in journalism. Last year, I wrote a couple of career/employment articles that earned spots on the AOL and Yahoo! home pages. I feel like I should do more of that sort of thing, but haven’t. Damn you, inertia!
I have aspirations. To someday control my cowlicks. To get a chemical peel that will even out my blotchy face. To finally get my trail of 401K’s in order. And, as with everyone else I’ve ever met in my entire life, to write a book. Maybe? I like to aim low, so for now I’m just writing an article, which I haven’t really even started yet thought I’ve been wanting to for months and months. I want to tell the story of awkwardly but triumphantly disagreeing with the status quo. That’s how we moved past her feeding tube and it’s how we’re navigating her strabismus and amblyopia. I don’t reject mainstream medical advice, but I am demanding more. 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. Peeing while soothing a crying toddler. Cooking while holding a 25-pound human. Bribing a toddler to wear Parisian frames that most people would kill to wear. All that.
Not sure if I should even mention it, but a while back, I invested in screenwriting software, studied up on the art, and started writing a screenplay. Think of my film-to-be as a modern-day Nine to Five with subtle nods to Ugly Betty, everything that is Tina Fey, and The Office plus tons of inspiration from my own varied experiences working for a.) male-dominated companies in male-dominated industries and b.) myself. I’ve enjoyed it all, but my career has been a wild and laughable ride, helped along by my innate aversion for authority. Perfect fodder for a groundbreaking flick–right? Right!
Anywho, that’s me. I’m genuinely glad you stopped by. Drop a line via email or comment sometime. Thank you for your time, interest, and (hopefully perfectly aligned) eyeballs.
Hi Amber,
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.
Though Mamapedia Voices has just started out, it is already receiving a lot of attention, both on our site, on our guest bloggers’ sites, and beyond. We promote our featured guest bloggers through emails, Twitter, Facebook and more. It’s a wonderful opportunity to grow your audience!
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.
Also, because we like your blog, please download a recognition badge from us- there are many fun designs to choose from here: http://www.mamapedia.com/voices/blogger_badge
Thank you, and I look forward to reading more of your work!
Best wishes,
Julie D’Agostino
Editor, Mamapedia Voices
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!
Hi Amber
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, Sydney
Claire, how are things going? Did you get my email? I hope she is improving! Let’s talk soon.
Hi Amber
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
Hi there
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.
Amber
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.
Sincerely,
Jessica
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!
Hi Amber!
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!
Hi Amber
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.
Julia
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!
Amber -
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.
But I hope to try this approach when Chase starts gaining a bit more – not on the growth chart now!
Ive read a bit on Graz…I can’t afford it
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.
Amber,
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.
Thank you!
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.