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!
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.
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.
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!