Recapping our tube-weaning experience with Spectrum Pediatrics

Hello! In the fall of 2017 we weaned our 8-month-old daughter off of her NG tube with the help of therapists at Spectrum Pediatrics. The experience was life-changing, and I wrote a series of emails to friends and family recapping the 10-day intensive wean as well as a couple of check-ins before and after the program.

Knowing how isolating it can be as a parent whose child has feeding difficulties, I decided to post these emails online in an effort to help other families who are seeking help. If you have questions or would like to know more, feel free to get in touch by visiting the contact page.

The email updates are posted in order from pre-wean (October 2017) as the first post to post-wean (December 2017) as the last post. Note that all family names in the following posts below have been changed.

Also, note that I am not sponsored by Spectrum in any way! These updates are simply a summary of our own experience and the custom-designed program Spectrum created for our daughter, and not representative of anything beyond that.

Update 1: Spectrum Tube-Weaning Program

October 9, 2017:

Hello! This is the first in a series of emails I’ll be sending over the next two weeks recapping what we hope will be Jane’s transition from a tube-fed kiddo to an “eater.”

Summing up the past six months of our lives in one little paragraph:

As everyone on this email list (a handful of friends, family, medical professionals) knows, Jane has had feeding difficulties for the past six months. She currently receives about 90% of her calories through an NG tube. One of the most challenging issues we face is that we still don’t know — and probably never will know — why Jane stopped breastfeeding at eight weeks old. After a very long journey full of medical tests, hospitalizations, and NG tube adventures, we have exhausted the medical/clinical route of treatment. Our best guess is that Jane’s eating issues stem from some combination of silent reflux, food sensitivities, gagging, NG tube irritation, stress, and/or a behavioral aversion — and there aren’t really any other tests or doctors left to confirm which one(s) of these is the true cause.

The news:

And, honestly, the cause doesn’t matter to us much anymore. The fact that Jane once was an eater, and still is a (hesitant) eater, is proof enough to convince us that she is capable of feeding herself at this point. Paul, myself, and most members of Jane’s medical team have decided that intensive feeding therapy is the best next step for Jane. We are currently working with the Spectrum Pediatrics therapy group to re-teach Jane how to connect hunger, food, eating, and happiness together.

The basic concept of the Spectrum program is this: Get Jane hungry, and she will eat. Hunger (physical component), paired with the awareness of how to “solve” hunger and the eagerness to do so (therapy component), can make Jane eat again. We will be spending the next two weeks carefully weaning Jane off of her tube with the Spectrum team and using hunger as a key motivator for her to eat orally.

Some deep thoughts regarding “the tube:”

Let me pause to acknowledge that I’m aware of how simple almost insultingly simple! this strategy seems. Hunger is something so innate that many of us (myself included) wonder how in the world someone could lose touch with, ignore, or not understand the sensation of a growling and empty tummy. It’s almost unbelievable to think that a kid won’t eat. Most of the people on this list have had to actually witness a mealtime with Jane in person to understand what we mean when we say she “doesn’t eat.” (And what we mean is that she does not eat.)

I would have to open many bottles of wine and type many more emails detailing why and how Jane’s relationship with food and hunger has become so complicated. As I’ve expressed to many of you, we have a very love/hate relationship with Jane’s tube, which simultaneously solves and worsens her feeding problems by delivering calories devoid of effort from Jane. We hope that reducing Jane’s dependency on the tube will help simplify her perspective on eating. We hope that she will be a tube-free, happy kid who knows what hunger is — and how to solve it.

Go Jane!!

The good news is that we feel like we’ve made a lot of progress in recent months. We’re confident that Jane has what it takes to become an eater. At present she has a neutral, or even positive, relationship with food. Six months ago she would cry if held in the breastfeeding position and wouldn’t open her mouth for a bottle. Her oral intake was close to zero. Today she shows interest in eating both solids and milk, and does take in a few calories by mouth. She no longer cries when held in the breastfeeding position and plays with her bottles and sippy cups. Whereas she used to seem to dislike eating, now it seems like she just doesn’t understand it. Jane usually drinks 2-4 ounces of breastmilk through her sippy cup every day and about 1/4 cup of solid foods. These amounts are a far cry from the recommendations for children Jane’s age (something like 20-32 ounces of milk and 1-2 cups of solid foods), but they’re better than nothing! We are encouraged by Jane’s interest in food and feel like a hunger “push,” coupled with therapy and guidance from the Spectrum team, can help her rekindle her desire to eat orally and improve her relationship with food.

If we didn’t do this, then…

Although Spectrum Pediatrics has something like a 90% success rate of weaning kids off their tubes, we can’t be absolutely sure that this program will work for Jane. However, like I said earlier, at this point in our journey it’s clear that intensive therapy is what Jane needs — and, really, the only option we have left. Without this program, our “prescription” for getting Janeoff of her tube would basically be to cross our fingers and hope that she grows out of it over time. Multiple doctors have shrugged their shoulders, seemingly unconcerned that our baby doesn’t have the desire to eat, and told us to keep tube feeding Jane until she simply “grows out of it.” Her test results are normal and she’s trending positively on the growth chart, they say. So, why be alarmed?

Again, this seems insultingly simple to me. I’m alarmed because our daughter did eat, and now she doesn’t. I’m alarmed because we don’t know why she doesn’t eat. I’m alarmed that she recently started vomiting after her tube feeds. I’m alarmed that she shows no signs of hunger. And I’m probably most alarmed at the thought of a scary future: Continuing to feed Jane through a tube for months, or even years, to come while we wait for her to “grow out of it.” If Jane cannot learn to eat on her own soon, we will likely have to replace her nasogastric (NG) tube with a gastrostomy tube, which would be surgically inserted into her abdomen. As you might have noticed, I’m sending this email at 4 a.m. and do not get much sleep. This is why.

Where’s your happy place?

Another reason I’m up at night is because I wonder where Jane’s “happy place” is when it comes to appetite and bodyweight. When you feed a baby through a tube, you don’t get much feedback regarding fullness (other than vomiting, which isn’t great feedback at all). This makes it very difficult to know whether you are overfeeding your baby, underfeeding her, feeding her too frequently, or not feeding her often enough. Additionally, different recommendations from nutritionists and doctors on how much and how often to feed Jane have made it clear that there is no “one size fits all” nutrition plan for an infant.

Without Jane’s input to guide us, we have obviously leaned more toward overfeeding her rather than underfeeding her through the tube. Because, like any parents would, we want our daughter to grow — and, for better or for worse, are constantly monitoring her position on the growth chart. Just as a data point for you to have, Jane was born at the 2% mark for weight, was at the 5% mark at two months old, and then jumped to the 25% mark shortly after her NG tube was inserted around 3.5 months of age. Obviously we are thrilled that Jane has grown thanks to her tube feedings, especially since she was hospitalized with a “failure to thrive” diagnosis due to a plateau in weight gain when her feeding difficulties began. At the same time, though, Paul and I have always wondered if we’ve overfed Jane through the tube to the point where she’s above her natural, “happy” spot on the growth curve. Was her body designed to be at the 25% mark, or is she more content somewhere else on the curve? Without hunger cues to tell us, we don’t know.

Hello, hunger.

And so hunger is where this program begins. On Wednesday we began the “hunger induction” phase of the Spectrum tube weaning program, gradually cutting 10% of Jane’s calories delivered through her tube every day for five days. We started by reducing her night feeding session, and then eliminating it entirely. Next was breakfast — first cutting a few ounces off of Jane’s tube breakfast and then eliminating her breakfast tube feeding entirely. On Sunday Jane received 50% of what she usually receives through her tube (13 ounces of milk instead of her usual 27). Although it’s definitely not fun to put your baby on a diet, Paul and I hope that this short-term intervention will reduce Jane’s dependence on her feeding tube and encourage her to eat on her own for the long term.

The details!

Some more specifics on the program:

First, Jane is allowed and encouraged to orally eat and drink as much as possible during the hunger induction phase and all other phases of the program. We continue to offer Jane solid foods and milk from her sippy cup 4-5 times a day. As of Sunday, we have not seen any major increases in Jane’s oral intake, but there have been a few moments she’s seemed more interested in eating. Over the past day or two, she’s decided that she loves to eat whatever and whenever Mom eats — and as a result has snacked on bread, soft pretzels, eggs, ricotta cheese, mac ‘n’ cheese, hummus, and cookies! Good thing I always seem to be eating…

Second, it goes without saying but I’ll just say it anyways: We are monitoring Jane very closely during this time. We even have Grandma here as an extra set of eyes! We talk with the Spectrum team every day, monitor diaper output, and are watching for any signs of dehydration. So far, Jane has been her usual happy self and we have not noticed any red flags. We are also giving Jane Pedialyte to help keep her energy and hydration levels up.

Third, we carefully researched other programs and talked to parents and medical professionals before selecting the Spectrum program. If you really want to know more about tube weaning, here are some of my favorite resources:

The end, for now!

And that’s my update for now! Tomorrow we journey to Alexandria to start the weaning phase of the program with daily in-person support from therapists. We are feeling confident that Jane is going to ace this and be tube-free soon. I’ll check in again soon with an update. Wish us luck!

Update 2: Spectrum Tube-Weaning Program

October 11, 2017


We’ve finished Day 2 of the intensive therapy phase and I’m happy to report that Jane is happy. Happy and… kind of eating! Not huge quantities, but a little more than she has been at home. The therapists are encouraged by Jane’s positive relationship with food, interest in eating, and oral skills. They say she is at a great starting point to transition off of her tube.

A little more push.

Although Jane’s hunger levels have surely increased over the past week, the Spectrum team thinks she might need a little more “push” to really dig into a meal and eat with intent. When we arrived in Alexandria on Monday and weighed Jane, we were surprised to see that she only lost about an ounce during her five-day hunger induction phase. That high-calorie hummus (one of her favorite foods) must be holding her over! This is good news and bad news. We obviously don’t want Jane shedding multiple pounds, but at the same time we want to make sure her hunger drive is in place. Like most things related to the tube… it’s complicated.

Tube troubles

Speaking of the tube, it’s still part of the plan for now — even though Jane seemed to want to jump the gun on Monday night by pulling it out herself :). I reinserted it for what I pray is the last time! We are continuing to supplement Jane’s meals with tube feedings (Pedialyte and breastmilk), but quantities we provide through the tube are decreasing as her oral intake improves and we work to maintain a healthy amount of motivational rumble in Jane’s tummy.

Happy baby…

Despite these changes in her diet, Jane remains extremely happy — perhaps even happier and more playful than she was before we started reducing her calories. (Which makes me think about the whole “happy place” appetite discussion I brought up in my last email…) She is energetic, smiling, and sleeping well. Diaper output is good and we don’t see any signs of dehydration. If you didn’t know she was on a diet, you’d never guess she’s hungry!

Or hungry baby?

Until Tuesday afternoon, that is. We were surprised to see Jane become quite fussy after her nap, which is unlike her. Unable to soothe her with our usual tactics (rocking, singing, playing), we got out her sippy cup and food to try giving her a snack. Although Jane showed some conflicted behavior (crying, grabbing the food/cup, crying, pushing it away), she eventually settled down and ate. After downing about an ounce of pureed sweet potatoes, bits of a cooked egg, and half an ounce of milk, she was in much better spirits. A similar thing happened around 1 a.m., when Jane woke up crying and couldn’t fall back asleep. After some back and forth, she finally drank a little from her cup and we were all able to go back to sleep. When she woke up again (for the sixth time!) and continued to refuse breastfeeding and the sippy cup, we decided that we needed the tube to help us out. With an additional two ounces in her tummy thanks to the tube, Jane was finally able to fall asleep for the rest of the night.

Food for thought

Although the quantity of food Jane ate during these two instances isn’t impressive, and although we still had to rely on her tube for additional support, the meaning of the experiences is. Jane felt hunger, associated it with food, and felt better after eating. The more we can repeat this pattern, the better she will become at eating/drinking larger quantities in shorter amount of times.

More to come in the next day or two! Thanks to everyone who has responded with words of encouragement. And special thanks to my mom and friend Meredith who came to help us move to Alexandria for the next 10 days. Jane loves her cheerleaders!

Update 3: Spectrum Tube-Weaning Program

October 13, 2017

Hello! I can’t believe we are halfway through Jane’s tube-weaning program. She has come a long way in just five days!

Hunger games

Last time I checked in, we were waiting on Jane to identify hunger. I know that sounds crazy, but if you put yourself in her shoes, it kind of makes sense. Imagine if you hadn’t felt real hunger in months. Another way to look at it — imagine if you hadn’t felt hunger for more than 50% of your life, which is Jane’s case since she has been tube fed since she was 3.5 months old. The sensation of a growling tummy would be new and uncomfortable, and you might not know what to do about it.

On Day 3, Jane seemed pretty conflicted about the whole hunger thing. She started showing some signs of fussiness, followed by conflicted eating behavior (grabbing the sippy cup, pushing it away, fussing, pulling it back toward her, pushing it away). Day 3’s breakfast was particularly challenging — Jane kind of “curled up” in her high chair, sucking her fingers and refusing to take a bite or sip of anything. After about 15 minutes, Jamie (therapist) and I decided that a change of scenery might help Jane pull it together. We took her on a nice walk through the neighborhood and set up a little picnic at a nearby park. Jane has enjoyed eating “al fresco” in the past, so I thought the trick might work again. And sure enough, girlfriend decided to eat a full breakfast as soon as we sat down outside.

The hummus “dunk”

Day 3’s lunch will go down as one of my favorite meals of all time. As you know, Jane loves her hummus, so it’s been a food we continue to offer as we let her get comfortable with eating. (Plus, hummus is high calorie — perfect!). Another thing Jane loves is imitating Mom, because as you know I’m just that cool. So for lunch, Jamie and I sat down on Jane’s play mat and started eating carrots and hummus. Sure enough, Jane wanted to join in the fun. Not only did she join us in eating hummus off of a carrot stick, but she had to one-up everyone by reaching for the family-sized tub of hummus and dunking her whole head in it. Go girl!

Sipping away

Although Jane is definitely making progress on the food front, her interest in liquids remains so-so. We have five different ways of offering liquids to Jane, each with pros and cons:

  • First, obviously, is the tube. Very convenient, but obviously not a long-term solution!
  • Second is the bottle. On the plus side, Jane knows what the bottle is and is fully capable of sucking from it. On the downside, Jane has had a lot of bad experiences with the bottle that we think might make her less inclined to drink from it. In the past, she’s only drank from the bottle when she is drowsy (i.e., less aware and very relaxed) — if she’s alert, she’ll refuse it. Another consideration is that babies Jane’s age typically start transitioning away from the bottle and toward cups. So, what’s the point in pushing the bottle if we have to transition off of it in a month or so anyways?
  • Third is the sippy cup. Newer and exciting, with experiences that have hopefully only been positive! Jane also knows how to “work” the sippy cup, though Jamie and I have been experimenting with multiple different cups lately in hopes of finding the perfect flow. Jane seems to like fast-flowing cups that require less work on her end. We want something that flows quickly, but doesn’t spill. Haven’t quite found the perfect cup yet.
  • Fourth is breastfeeding. At the start of the Spectrum program, we said that our main goal was to get Jane eating and drinking on her own — and that if we could get her back to nursing, that would be “icing on the cake.” The therapists and I have been trying some different strategies to introduce Jane back to breastfeeding. It’s something she used to know how to do, but hasn’t done in about six months. I’m not sure she’ll be able to bounce back after such a long hiatus.

Given all the options above, Paul and I feel like the sippy cup is our strongest liquids contender at the moment. We haven’t even offered Jane a bottle since this program began, and are obviously trying to work our way away from the tube as well. As for breastfeeding, it’s something that Jane and I will keep trying as long as she’s open to it. I think that step one might be to get her more comfortable with milk in general (through the sippy cup) and then get her comfortable with breastfeeding. Whether or not that will happen in the next 3.5 months (before she moves to cow’s milk at age 1) remains a mystery.

Feasting on Day 4

After the ups and downs of Day 3, we saw some definite progress on Day 4. Jamie and I met at a cafe for breakfast (since Jane likes eating in new environments…. and because I needed a pastry) where Jane proceeded to chow down on peas, avocado, and part of a croissant. Breakfast of champions! Lunch in her high chair also went well. Although I prefer to give Jane homemade purees and foods, we’ve been experimenting with a few different snacks and baby food pouches as well. Grandma went to the store when she was visiting the other day and stocked up on lots of savory-type pouches since Jane seems to like salty, buttery foods. She even bought one that is flavored like chicken casserole! Sounds disgusting, right? Jane LOVED IT.

Day 4’s dinner is my second-favorite meal of the program so far. Jane was an eating champion and set a new “PR” for eating. Lots of avocado, more “chicken casserole,” a milk/yogurt smoothie of sorts, and about 2/3rds of a Costco-sized croissant. Watching her eat the croissant made me so happy that I even shed a tear. Proud mother!

Glorious sleep

Last good news to report: even though I’m typing this email at 3 a.m., I promise that I’m getting more sleep. One of the best things about reducing our dependence on the tube over the past few days is that everyone, including Jane, is sleeping better.

Let me backtrack to explain why: One of the worst things about tube feeding Jane is that I have to do almost all of her feeding sessions during her naptimes and bedtimes. There are a number of reasons why we tube feed Jane while she sleeps (that would require a whole other email regarding tube feeding tactics and strategies), but one of the main ones is because she is less likely to vomit in her sleep. So, nighttime and nap times in our house are typically more work than they are rest! Paul and I have to carefully watch the monitor to make sure Jane doesn’t roll in her sleep and tangle herself in her tube cord. We also have to wake up to attach and unattach Jane from the cord, flush her tube with water, rinse and refrigerate her tube bag, etc. And, of course, the sound of the loud tube pumping milk and sensation of fullness often wakes Jane up as well, which in turn wakes us up. Basically, it’s a mess.

But now, with fewer tube feedings, everyone is getting more sleep! I can’t tell you how much I love rocking Jane to sleep like a “normal baby,” without having to “hook her up” to a milk pump. It’s so nice to lay her in her crib and let her sleep soundly and naturally. Today I put her down for a nap and just stood there staring at her for a good five minutes. No cord laying alongside her little sleeping body! No sound of the pump whirring in the background!

Speaking of sleep, I guess I should get back to it. More updates to come soon. Thanks again to everyone for your thoughts and prayers!

Update 4: Spectrum Tube-Weaning Program

October 15, 2017

Big news!

Announcement: The tube is gone! On the morning of Day 5 (Friday), we removed Jane’s NG tube. It was a big, scary moment — but Jamie assured us that Jane was ready for it. We wanted to give Jane a full day of tube-free opportunities to eat, and decided that if she didn’t do well during the day we’d re-insert the tube at night. We weighed Jane that same morning and were happy to see that she only lost four ounces (2% bodyweight) over the past five days! Jamie said that most babies Jane’s age lose 4-5% of their weight before their hunger drive really “kicks in,” so we were encouraged by Jane’s progress. After she polished off another container of hummus and quarter of croissant at dinner, we were excited to go to bed for the FIRST TIME in months without the tube! I can’t tell you how beautiful it was to put Jane to bed without needing to “hook her up.” It felt so good to shut my eyes without listening to the whirring sound the tube pump. Also, no nightmares about waking up to a vomiting baby!
I have a long list of “tube-free to-do’s” that Paul and I have been crafting for months. Once we’re 100% confident that the tube is gone for good (we still have it around, just in case we need to re-insert it), I’ll share the list with you all. We also bought a bottle of champagne (for the parents) and a pair of shiny gold baby pants (for the baby) for our upcoming tube-free celebration dinner.
Challenge 1: Liquids

The big celebration is close, but we’re still holding onto the champagne for now. The first challenge we still have to overcome is drinking. Jane is still not interested in milk, even in the wee hours of the night. For the first time I can remember since she was a newborn, Jane finally woke up crying a couple of nights ago… and then decided to party for three hours straight with hardly a sip of milk. Paul and I alternated rocking, singing, and offering her sippy cup, but Jane would not drink more than a gulp or two every 20 minutes. Unfortunately Jane is still learning the purpose of milk, and does not seem to realize that drinking it will solve hunger and thirst. Unlike solid foods and purees, milk is not new or exciting enough to spark her interest.
Jamie has told us multiple times that drinking is almost always the last obstacles that kids overcome in this process and that Jane should pick it up in the next few days. We’re hoping that Jane will learn the value of milk quickly so that she can stay hydrated and well-rested. I’m writing this email at 12:45 a.m. on Sunday and Jane woke up about 30 minutes ago. I just swapped places with Paul so that I could pump and type this email after failed attempt #1 of drinking/sleeping. He’s rocking Jane with her sippy cup right now, and I hope she turns it around!
Challenge 2: Speed

Challenge #2 at this point is efficiency. Jamie and I started timing all of Jane’s meals and are trying to keep them under one hour. Girlfriend likes eating, but her skills need to sharpen up so that she can satisfy her hunger quickly. Unlike drinking, Jane is making solid progress in this category and set a new PR today by downing about 160 calories in 55 minutes! Although bites of real food to chew are Jane’s favorite, she seems to be learning that purees and liquids are easier and faster to get down. Additionally, we’ve started spreading and dipping cream cheese, hummus, and breastmilk onto all of her croissant bites to amp up the calories even more 🙂
If there’s one thing I’ve learned over the past six days, it’s that Jane is one smart girl. After seeing her eating skills go “crouched in my high chair” to “give me that croissant” in only a few days, I’m confident that she can overcome these last two challenges by the time we finish this program. Thanks to everyone on this list for being our cheerleaders!

Update 5: Spectrum Tube-Weaning Program

October 17, 2017

Hello from Ashburn! On Day 7 (Sunday), Jamie suggested that we transition back home for the end of the program. Jane is doing so well that Jamie felt confident she’d continue to thrive in her normal home setting. It’s also typical for the therapists to start reducing the amount of time spent with families as the program progresses. Since Jamie was only planning on visiting us in our (cramped, dusty, old) AirBnB once a day from Sunday forward, she offered to drive to our house for the once-a-day sessions. We drove home Sunday night and I can’t tell you how happy we were to be back in our own casa!

Remove the evidence!

As soon as we arrived home I went on a little tube-free frenzy. Because the tube requires constant maintenance — such as flushing it out with water, checking it for placement in Jane’s stomach, cleaning and storing the tube bag, attaching and unattaching the tube pump to its IV bag stand, and re-securing the tube to Jane’s face and head with adhesives — our house was littered with syringes, adhesive tape, stethoscopes, and a bunch of other medical supplies. I swept up all tube-related objects and stuffed them in a closet that I don’t plan on opening for a long long time. Felt so good!

Happy baby

Jane is feeling good, too. Paul and I agree that she’s noticeably happier and more energetic these days. Maybe it’s just a phase she’s reached in her development as a baby, but I can’t help but think the tube removal has played a large part in the change. After a meal she often appears to get a “food high,” laughing and babbling nonstop. It’s pretty cute.

Tube-free perks

Now that we’re home and our house is cleared of tube evidence, it’s starting to sink in that Jane really is better. Every day I’m surprised by the little ways our life has improved! Some of the perks of a tube-free lifestyle include:

  • Cordless sleep: I think I’ve mentioned this before, but prior to this program I carefully coordinated almost all of Jane’s tube feedings with her nap times (because she was less likely to vomit if fed while she slept). Nap and bed times were big productions — I had to warm the milk, prepare a bottle and the tube bag, prime the feeding pump, and attach the bag tube (“cord”) to Jane’s tube. Then I had to do all of the usual baby sleep things (read a story, dim the lights, bath/PJs, etc.). Then I had to offer Jane the bottle (just in case she wanted to drink anything orally, which she never did) and rock her to sleep. And then when she was asleep I would pour the leftover bottle milk into the tube bag and start running the tube pump. And then, with the pump running, I would very carefully lay Jane in her crib so that the cord from the tube was neatly tucked under and alongside the left side of her body, so that she wouldn’t roll or tangle herself in it. And then, about 40 minutes later, after the pump finished filling Jane’s stomach with milk and the tube bag was empty, I would sneak back into the room and carefully “unplug” Jane’s tube attachment from the pump cord. (Shout out to Paul who is the unplugging pro.) And then I would flush out Jane’s tube with a syringe filled with water and re-close it. After all the intense tube logistics and monitoring, I could use a nap myself! Unfortunately I never got to take one because the chances of Jane waking up during all the tube back-and-forth were fairly high. I think we are both a lot more rested and less stressed now that Jane can sleep like a “normal baby.”
  • More fridge/freezer/pantry space: When I said “little ways,” I meant it! The tube bag took up an annoying amount of space in our refrigerator (you have to keep it cold between uses.) We also had to store dozens of extra bags in our pantry, and keep ice packs in our freezer and a thermos and bowl in our bedroom for heating/cooling milk and pump accessories. They’re all gone now and I love the additional space!
  • Stress-free wipe-downs: The #1 most annoying thing about a tube, BY FAR, is constantly re-adhering it to your baby’s skin. Jane loved to tug at her tube, so I had to remain super vigilant about re-taping it in place whenever it came loose. Whenever Jane’s face got wet (from slobber, bath, eating/drinking), her tape would come loose. I had to be extra careful wiping her left cheek in the bath or after a meal. Despite my best efforts, her tape would still come loose 2-4x a day. When her tape started to come off and the tube began to wiggle free, I’d have to pin Jane down, hold her still, and carefully remove and re-apply little pieces of tape to her cheek, nose, and behind her ear. Not fun! Now that the tube is gone, I love taking a big wet rag and wiping away at her cute little face without a worry.
  • Mobility: The nap/feeding situation described above meant that Jane and I had to be at home from 8-10 and 2-4 every single day. This really cramped our style and made it difficult to schedule outings or run errands. Now that Jane can nap anywhere, we are a lot more mobile! I can’t wait until she falls asleep in the car seat one day soon, and I can sneak in a little extra shopping trip 🙂

Liquids update

Obviously Jane is doing awesome and we are very proud of our little eater. However, we’re still waiting on Jane to discover her inner drinker. Jamie and I have been trying all sorts of tactics to encourage Jane to drink, including multiple types of cups, straws, and pouches. We’ve also been playing with Jane’s schedule and the presentation of her sippy cup — for example, right now I’m only offering Jane’s sippy cup during her snack and nap times and not during meals in an effort to keep the cup exciting and not have it “compete” with solid foods. Jane’s milk intake has gone up slightly over the past week, but we are still a long way from reaching our goal of 15-20 ounces of milk per day. Jamie is confident that Jane will learn to love milk again with a bit more time and practice. Let’s hope that by Day 10 we get there!

Thanks again to for your words of support and encouragement. I’ll be back soon with another update!

Update 6: Spectrum Tube-Weaning Program

Hello! Apologies in advance for a long email. Don’t feel like you have to read it all!

Our little graduate

Jane has officially graduated from “eating school!” We met up with Jamie on Wednesday for our last meal together. Jane showed off her skills by bringing her sippy cup to her mouth all by herself, eating half a croissant, and sucking puree out of a pouch without a single squeeze from Mom. She’s a quick learner!

Liquids update

Even though Jane is crushing it on the solids front, we are still struggling with her liquid intake. She doesn’t hate drinking, but she’s just not interested. She’ll take a few sips from her cup while in the high chair at meals, and maybe a few sips more during snack time or before/after naps. I’m still waiting for a breakthrough moment when she will chug 2+ ounces in a single go!

In the meantime, we’ve come up with some creative ways to keep Jane hydrated:

  • Pouches. Girlfriend loves to slurp, squeeze, and suck from little puree pouches. We’ve stocked up on lots of extra liquid-y ones that are mostly made of water and juices. I also orderd some reusable pouches that I can fill eoth my own purees!
  • Soggy solids. You know how professional hot dog eaters dunk their hot dogs in water before chowing down? Well, I’m doing the same thing with breast milk and croissants. Before giving Jane a piece of croissant (or pancake, another favorite food of hers!), I get it nice and soggy by dunking it in a bowl of milk. Not only does this help keep Janehydrated, but it also helps her chew and swallow the solid food faster — just like the hot dog eaters! Win-win.
  • Breast milk cooking. Apparently breast milk is a decent substitute for real milk in recipes — who knew? Today I made breast milk pancakes and Jane gobbled them up. Next I might try breast milk mac ‘n’ cheese! Any other recipe ideas?
  • Water. Jane loves drinking water out of an open cup. It spills everywhere, of course, but it’s worth it. She gets in another few ounces of liquid a day through our splashy water sessions.

Another thing I learned recently is that Jane likes to drink from her sippy cup in her stroller and car seat. If I hand her the cup on a walk or drive, I’ll see her play with it, bring it to her mouth, and drink all on her own. It’s like she wants to drink when she’s relaxed and nobody’s watching! The past couple days we’ve gotten a few more ounces in that way.

Learning the hard way

Jane has woken up crying in the middle of the night a few times over the past week. Each time this happens we offer her sippy cup, and she recently set a record for her largest amount of milk consumed (3.5 ounces) in the shortest amount of time (only about 45 minutes — ha!). She seems to be learning that milk is necessary to solve her hunger, and is starting to learn that she needs more of it to sleep soundly. As you recall, Jane was exclusively fed during her sleep when the tube was in, so I bet this new routine is foreign to her. Before now, her hunger (if she ever was hungry?) was actually cured by falling asleep (because that’s when we would run her pump). Now, she has to stay awake and drink in order to cure her hunger. It’s a lot more work on her part! These nighttime sessions are teaching Jane “the hard way” that milk is important.

The numbers

We also weighed Jane for the first time since Friday (Day 5), and were surprised to see that she actually gained weight toward the end of the program! She weighed in at 15 lbs 12.5 ounces as of this past Tuesday (Day 9). I know some of the medical professionals on this list are probably super curious to see some of “the numbers” behind the program, so here are some stats for you:

  • Starting weight: 16 pounds
  • Weight after 5-day “hunger induction” at home/Day 1 of therapy: 15 lb, 15 oz
  • Weight on Day 5 of therapy: 15 lb, 11 oz
  • Weight on Day 10 of therapy: 15 lb, 12.5 oz
  • Intake through tube before program: 24-27 oz per day (480-540 calories)
  • Intake through mouth, Day 10 of program: Roughly 470-630 calories (Jane is averaging 150-200 calories per meal, plus another 100 or so in snacks)
  • Vomit frequency, pre-program: About 3x a week
  • Vomit frequency, post-program: 0
  • Jane’s happiness score before the program: 7
  • Jane’s happiness score after the program: 11

I try not to get too caught up in the numbers, but I do find it fascinating that Jane is eating roughly the same amount of calories now that she was when she was tube fed — but is vomiting a whole lot less. She is also noticeably happier and more energetic. Which is why I gave her an 11 out of 10 for happiness.

Brain-mouth-gut connection?

What’s also interesting is that a tube-fed meal for Jane typically took 45 minutes to two hours, depending on how likely we thought she was to vomit. When Jane eats with her mouth, she consumes the same amount of calories in about 30 minutes — and appears to feel great afterwards. The more I see Jane take control of her own diet, the more I believe that the brain-mouth-gut connection is real. It seems like if her body knows that she’s eating, then it responds positively. She has time to think about her food, chew it, swallow, and prepare her digestive system. Alternatively, with the tube, food was basically dumped into her stomach without warning. Can you imagine how you’d feel if you suddenly went from hungry to very full without seeing, tasting, or chewing your food? No wonder she often looked and acted nauseated after her meals.

Eating is fun

One of the best things about being tube-free is the happiness I’ve finally found in feeding our child. Paul and I love food, and mealtimes are a big event in our house! I’ve always wanted to share a meal with my daughter and haven’t really had that opportunity until now. With the tube, I actually dreaded feeding Jane. My days were broken up into four-hour blocks between stressful feedings and sometimes it felt like an endless cycle of preparing the tube, watching the pump slowly drip milk into Jane’s stomach while she slept, removing the tube, and then cleaning up vomit and rocking a nauseated baby. Food basically equalled fear for our family. Just as I recovered from the previous feeding, it was time to start getting ready for the next. Not fun. Now, without the tube, Jane and I get to have fun eating together. I love watching her try new foods, get messy, play with her spoon, and eat donut crumbs straight from my hands. Yes, she had her first donut the other day! We talk, play, and listen to music when we eat. I give her bites of my food and even let her feed me sometimes. Our kitchen floor and walls are a disaster and I love it.

Jane wants to talk

Here’s another unexpected perk of not having a tube: Jane is a lot more talkative! Paul and I noticed that Jane’s babbling has really picked up in the past week, and she’s making all sorts of new sounds and shapes with her mouth. I mentioned this to Jamie, who said that many kids they’ve worked with start talking more once they start eating. Since they’re suddenly using their mouths more, they’re more aware of all the fun things it can do. Jamie said that kids often seem to quickly hit other developmental milestones (walking, crawling, etc.) once they start eating. Again, I guess the brain-mouth-gut connection is real.

What’s next?

Even though the intensive part of the program has come to a close, we will continue working with the Spectrum team over the next six months in the follow-up phase. Although Jane is a happy tube-free eater, we are still in touch with Jamie daily to check in and monitor liquids/diaper output. As time goes on, the frequency of communication decreases to once weekly and then once every few weeks. I’m very thankful that this program has ongoing support for months after the wean; many other programs I looked into did not provide this type of support.

As for Paul and I, we have a long list of tube-free to-do’s! Some of the things we’re looking forward to include:

  • Sleeping through the night (I’m writing this email at 2 a.m….)
  • Eating meals with Jane at the table/out at restaurants (still waiting for our champagne/gold pants dinner!)
  • Traveling without a medical carry-on bag (Jane and I are headed to Nashville in a few weeks, and the tubeless baby is significantly lighter to travel with!)
  • Running a marathon (happening for me this Sunday. Wish me luck!)
  • Letting Jane nap in the car/stroller (happened for the first time in months, just yesterday!)
  • Getting a babysitter (maybe easier said than done! I’m too attached!)
  • Filling our calendar with shopping trips and play dates instead of doctors’ appointments. Jane told me she wants to go to Nordstrom Rack.
  • Continuing our quest to visit every brewery in Northern Virginia (Paul is on a mission)
  • Go into downtown DC for a day (and maybe even stay the night?!)
  • Let Jane sleep in her own room (again, easier said than done?)
  • Go to the gym! Jane has been a member of our gym for months, but I’ve never dropped her in the little daycare area because I wouldn’t trust anyone watching her with the tube in. Now that she’s a “normal baby,” I think I’d be comfortable letting someone else supervise her while I sneak in a quick workout!
  • Photo shoot! Though obviously we thought Jane was beautiful with her tube, I can’t wait to snap a bunch of photos of her new tube-free face. The adhesives on her cheek left some nasty red irritation marks, but her skin is finally clearing up. She’s ready for her modeling career.

Peace out, pump

Another thing that I’m really looking forward to is breaking up with my breast pump. I’ve been pumping every 2-4 hours during the day and at least one time at night for the past six months, and would really love to give my body a break! I’m very grateful that my supply stayed strong for this long and that Jane was able to benefit from breast milk during her first year of life. Given her current/projected consumption level and my output level, I’m “outpacing” her by a good 10 ounces a day. I already have a month’s worth of milk stashed in our freezer, and I think that within six weeks or so I’ll have enough milk stored up to keep Jane going until her first birthday. Quick math: this means I only have about 294 pumping sessions left, or roughly 70 hours of pumping. HA.

I’ll check in once or twice more with updates over the next week or so. Thanks again for reading and cheering for Jane!


Update 7: Spectrum Tube-Weaning Program

December 29, 2017

Hello! Happy holidays!

Sorry it’s been a while since I sent out an update. And sorry that this one is so long — don’t feel like you have to read it all!

It’s true: no news is good news. Overall, Jane is doing great. She enjoys mealtimes and is becoming more efficient at eating every day as we incorporate food into our daily routine. Paul and I are so incredibly proud of our little eater, and also relieved to have a normal life back after six stressful months. Thanks to all of you for your help and support along the way!

Liquids update

When I sent out my last email, liquids were the “final frontier” we still had left to conquer. Although Jane quickly learned to love her solid foods and purees during the wean, her interest in drinking only improved slightly. Jamie and the therapy team assured us that Jane would come around eventually, and we’ve continued to encourage Jane to drink with new strategies and tools. Luckily the Spectrum program is six months long — so we have support from the pros (phone, email, and video appointments) even during the post-wean period. Jane is doing much better than she was six months ago, that’s for sure! Here are some data points:

  • Pre-wean oral intake: 0-3 oz per day
  • ‎During wean intake, early October: 2-4 oz per day
  • At home intake, late October: 4-6 oz per day
  • At home intake, November: 5-7 oz per day
  • At home intake, December: 9-11 oz per day

As you can see, we’ve made progress! Recently we even hit our goal of 15 ounces in one day — champagne for the parents and gold pants for Jane 🙂

As Jane gains independence, along with increasingly sophisticated communication and motor skills, she seems to be slightly more open to drinking (on her own terms). She’s better at signaling when she does or doesn’t want to drink (she can pull the cup toward her or push it away) and also better at drinking without my help — picking up the cup and bringing it to her mouth all on her own. She’s moved on to a straw cup, which allows her to take in larger amounts of milk with less effort required than a bottle or sippy cup. We’ve also had a couple of “breakthrough” moments where Jane has drank 4+ ounces in one sitting. If she’s very hungry or there’s a fancy new cup for her to try out, we tend to have better luck.

(We’re also curious to see what happens in six weeks when we move to cow’s milk — maybe she’ll like the taste better than breast milk? To date it seems like Jane is sort of “meh” on all liquids, since she hasn’t been overly keen on water or juice when we’ve tried those. We will see!)

Despite the fact that Jane is drinking three times as much milk today as she was when she was tube fed, she is still far from where she should be as a “normal” baby. An average baby Jane’s age “should” be drinking about 20 ounces of milk per day, not 10. Luckily we’re usually able to sneak in an extra 10ish ounces a day of fluids through purees, pouches, water, etc. to help make up for it.

This feeling of not being where we “should” be used to stress me out a lot (see this visual on “The Worry Cycle” if you’re interested), but in the past month or so Paul and I have come to accept the fact that Jane just isn’t a big drinker and probably never will be. That’s just her style. And, if you really think about it, you can’t blame her for not loving milk. I mean, if you’d been vomiting something almost daily and force fed it for six months, would you start eating/drinking it again in mass quantities? Yeah, probably not.

Jane is happy, playful, eating well, and putting out enough wet diapers. And her weight gain is on track — she’s actually gaining at a rate even higher than she was when she was tube fed. And, importantly, she’s not vomiting at all. Our new pediatrician (more on that below), nutritionist, and GI doctor are pleased with her progress. The weekly doctor’s appointments are finally dying down, leaving us time to go to fun places like the library, the grocery store, or Costco. Jane loves her free samples!


The solid food update is short and sweet — Jane is doing even better on solid food these days with more experience and SIX teeth to chew with. She’ll try just about anything, and it’s fun to see what she surprisingly does like (stinky bleu cheese, crab cakes) and doesn’t like (sweet potato, bananas). Or what she does like one day and then hates the next. Like a “normal” baby, Jane sometimes gets picky and fussy during mealtimes, or likes to play with her food instead of eat it. Some days she only wants to eat off a spoon. Other days she’ll only eat off a teething biscuit. Sometimes she loves her high chair, sometimes she hates it. Our kitchen walls have become a canvas for hummus and yogurt food paintings. Some meals are great, others are so-so. And, honestly, a few are just outright frustrating!

When Jane has a “bad” meal, I try not to stress. Jane’s appetite and preferences fluctuate, just like anybody’s does. And I’ve seen her “make up” for lighter meals numerous times, with bigger meals following small ones. Plus, the scale (which we are going to put away soon) reassures me that Jane is doing just fine regulating her intake. If she feels like eating only a few bites for dinner, I have to respect that. Some more links on this topic if you’re interested: Division of responsibility in mealtimes // Giving up control of feeding

Although some meals are better than others, there have been ZERO meals since the wean that have been a complete fail (i.e. Jane eats nothing). Before the wean, I would say that at least half of our meal attempts were total fails. So, obviously, we are WAY better than we were in the past. A couple of weeks ago we actually received the prescription from our GI doc to return Jane’s tube pump to the supplier (it’d been tucked away in our closet as a “backup”) and it’s GONE for GOOD! As for the pump IV stand, I’ve found that it makes a great coat rack in our garage. Ha.

Doctors, insurance, blah blah blah

Although it feels like a million pounds was lifted off our shoulders when the feeding tube came out, unfortunately we’ve been bogged down by insurance and doctor drama ever since. The weight of the administrative, political baloney we’ve had to deal with in the past few months isn’t nearly as heavy as dealing with a tube, but it’s still a real drag. I could write a whole other email series on this topic, but will try to sum it up in a few short paragraphs.

Goodbye pediatrician

Jane recently learned how to wave goodbye, which was perfect timing because we had to part ways with our pediatrician. It’s really not even worth my time to go into the reasons why our relationship with the old pediatrician’s office crumbled after eight months of almost weekly appointments — according to them it was time to “seek alternate care” due to “irreconcilable differences of opinion.” As someone who has never been kicked out of anywhere, receiving a letter booting me out of my second home was pretty shocking.

I’m not quite sure why my doctor’s office decided they couldn’t see us anymore (because they actually never contacted me to “reconcile” anything), but if I had to guess I think most of it was rooted in fear. Fear of being liable, fear of not being the one to “solve” Jane’s problem, fear of working with other doctors not in a certain “circle,” and fear of being associated with an “alternative” approach that isn’t widely known or accepted in certain medical communities. And, fear of being challenged by parents who are far more informed and opinionated than they were eight months ago 🙂

Just to illustrate this point, I’ll share a story. Right before we enrolled in the Spectrum program, my pediatrician’s office was urging us to schedule a G-tube stomach surgery for Jane  — they thought her vomiting was related to the placement/location of her NG tube in her throat. So their guess was that placing the tube directly in her stomach would help her tolerate the milk more easily (I have yet to see any data supporting this approach) and reduce her vomiting. They were more than prepared to support us with the required paperwork for this surgery.

However, they refused to write a prescription for the Spectrum therapy program (which has a documented 90% success rate). Why? They were uncomfortable with the idea of Janegetting hungry and potentially losing up to 10% of her weight under the supervision of therapists and nutritionists (not the direct supervision of a doctor). As you know, the program totally worked — and as you might recall from previous emails, Jane only lost 3% of her weight, which she gained back within days. To me, it’s obvious that Paul and I made the right decision for our daughter. If we’d followed the guidance of our pediatrician, however, Jane would have a G tube today and be even more disconnected from the concept of eating.

So, in sum, I’m not too sad that we had to part ways with our pediatrician. I’m just mad that they broke up with me before I could break up with them 🙂

Thankfully, our GI doctor at Hopkins has been more supportive. Not only did she agree to write the prescription for the Spectrum program, but she has stuck with us after the program and is thrilled with Jane’s improvement. After seeing 35+ doctors during this journey, we are glad to finally have a team of specialists who truly know Jane and understand what’s best for her. We have a new pediatrician who is a lot more laid back, a GI doctor who has seen hundreds of tube-fed kids, and the Spectrum team who obviously specializes in feeding and tube weaning.

Plus our ophthalmologist! Another update: Jane’s vision is improving a little bit, but it’s still likely that she will need surgery in 2018 and glasses for most of her childhood. Not the best news, but the procedure is very routine and her farsightedness/strabismus is totally treatable.

Insurance Battles

If the letter in the mail kicking us out from our old pediatrician’s office wasn’t enough, you should see some of the explanation of benefits letters we’ve received from Cigna, our insurer! Totally bogus. Apparently Cigna is cool with Paul and I fronting tens of thousands of dollars for them and then never paying us back. Too bad I don’t feel the same way.

The story with insurance is similar to the story with our doctor: Cigna would 100% pay for a G tube surgery and ongoing costs of tube maintenance and doctor’s visits, but has basically refused to pay for the Spectrum program, which is both “experimental” and out of network. Yet another illustration of the procedure-driven, short-term medical mindset we’ve run into way too many times.

Cigna does not seem to care that we saved them tens of thousands of dollars by avoiding a G tube surgery + the ongoing costs of tube maintenance. They are also happy to ignore the fact that after six months of unsuccessful doctors’ visits and procedures (that Cigna paid for without blinking an eye), the ONE program we (and by “we” I mean Paul, myself, and our other trusted doctor: Dr. Google!) found on our own actually worked.

Receiving reimbursement for the Spectrum program will be a long battle, but the good news is that I know for sure how it will end. I have no doubt that Cigna will pay us back every penny for the program, because Paul and I will appeal and appeal until the end of time!

Other fun stuff

I’d hate to end this email with a long rant about the health care system, so let’s focus on some lighter stuff :). For one, Jane is crawling! She zooms all over the house and we’ve had to install gates to keep her contained. She’s recently started to pull herself up on couches, chairs, and tables, so you know what’s coming next… !!

Jane’s other “tricks” include waving, giving kisses (open-mouth, French style!), and putting blocks on top of each other. She also likes to make sounds like BLABLABLAH and BRRRRR and MAHMAHAMAHAHA. She’s quite the talker!

We are also gearing up for Jane’s first trip to her father’s homeland! We are headed to Australia in February. If you have any tips on how to keep an 11-month old entertained for 24 hours of travel, please let me know…

And lastly, I finally stopped pumping! I have more than 800 ounces of breast milk in our freezer. Unless Jane starts downing entire gallons of milk over the next six weeks (before she transitions to cow’s milk), I think I’ll have enough frozen milk on hand to donate to a breast milk bank. So happy to be able to help other babies with feeding needs.

THE END (finally!)

Thanks again for cheering on Jane as she became an eater! This is probably my last email update (unless anyone is interested in receiving more long email rants about the US health care system… I’m happy to vent endlessly on that subject!), so thanks for being part of the story. Keep in touch!