A Home-Based Tube Wean

Eating her hot dog bun like a boss.

We've reached a point where we have become complacent with Olive's tube feeding. Yes, we are working on oral eating and going to feeding therapy and trying to make eating and cooking fun, but we are also happily tubing water and a ridiculously nutritious breakfast, lunch and dinner of real food each and every day. And Olive is thriving. She is happy and healthy and spunky as ever, growing along her own little curve. It feels safe and routine and comfortable, and it is essentially working for us right now. But complacency is a dangerous place. The longer we sit here, the harder it will ever be to have the guts to move forward.

Hydrating post-parade. July 2015.

We have tube fed Olive every day for the past 1,357 days. If we use an average of 4 boluses of water and 4 boluses of food each day (although it was often much more in the early days), that equals somewhere around 11,000 times as a conservative estimate. While a foreign and terrifying concept in the beginning, it is just a part of our day at this point, and I could do it with my eyes closed. Of course we had no choice but to adapt in the beginning. Around the time that Olive's tube was placed, she had diagnoses of chronic lung disease, retinopathy of prematurity (eye disease), hearing loss, anemia, a Grade 1 germinal matrix hemorrhage (bleeding in her brain), two hernias requiring surgical repair and failure to thrive. We were in a state of crisis, and we blindly trusted the advice of our then pediatrician and the attending doctor and gastroenterologist when Olive was admitted to the hospital for a nutritional assessment in June 2012.

Post-Op September 2012. Second surgery to change her PEG to a Mic-Key.

They assured us it would probably be very temporary, and she would start to take more and more orally. It was never framed as a choice, and we never even thought about fighting it. I regret that, and I blame myself for not researching it more and letting myself be blindsided by the fact that Olive stopped eating orally once she had her tube placed, a consequence that no medical professional ever told us was a possibility. I can't say for certain whether our decision would have been different of course, but in looking back it is so incredibly wrong that a medical team surgically placed this tube in our daughter's tummy without educating us on the potential side effects, sent us home with no real direction, and never provided us a single helpful resource let alone some kind of comprehensive plan for ever getting rid of this tube. There was a moment after she stopped eating that summer where I confronted her pediatrician about it and asked him whether he really thought the tube had been a good idea. Instead of taking any personal accountability, he actually said to me that it was our decision and really we are the only ones who could say that. Needless to say, that was the last time we ever saw him.

They show you a doll, tell you it's easy and send you home.

As devastating as it was when Olive stopped eating in July 2012, we put one foot in front of the other, picked up the pieces and moved on. There was no time to do anything other than accept it and adapt to it. We had so many other concerns that our only priority was providing her the nutrients she needed to grow and heal her lungs and her body so that she could someday thrive. I've spent the past four years learning from our mistakes by questioning everything we're told and finding people to help us and programs to help us and getting second opinions and tirelessly advocating for our child. As a result, we are in a really good place. All of Olive's health problems have resolved, and there is no medical reason why she needs a tube anymore. Her only remaining diagnosis is a vague "feeding disorder/oral aversion" as g-tube dependence is so rare in children that it is not even recognized as a medical diagnosis. I recently read somewhere that 1 in 20 children who have had a temporary tube placed become g-tube dependent, and we just happen to be in that unlucky 5%.

Happily having a dance party.

What does it mean to have a four year old that is g-tube dependent but otherwise healthy? It's odd. I never quite feel like we fit in. Recently when I took Juniper to a well baby checkup an unfamiliar nurse came back in to give her vaccinations and looked at me and said out of nowhere, "I didn't know you have a child with special needs." Her statement hung in the air for what seemed like an eternity before I blurted out my standard line of "oh well she doesn't eat really but she's otherwise healthy" when I realized she was talking about Olive. And as if that wasn't enough of a conversation, she followed it up with, "Well is she at least developmentally normal?" Say WHAT? I was so shocked by her asking that. What if she wasn't? Would that make her somehow less than? I don't know why this interaction bothered me so much, but I think it was the pity. I could feel it, especially when she ended our visit by saying she'd give me stickers to bring home to our special little girl. Barf.

Double trouble.

A few weeks later I took baby J to an ECFE class just to do something normal with her because I was never able to do anything like that with Olive. The very first class there was a group discussion about starting solids, and the teacher of course randomly asked me how solids went with my first child and if she was a good eater. So much for just being like everyone else as I quickly explained that Olive had medical problems and was tube fed, and the teacher said "oh, wonderful!" I know she didn't mean anything by that and had no idea what to say to me, but I can't seem to escape it. That same day the teacher supervising the sibling care that Olive attends asked me if Olive has an IEP through the school district after I told her about Olive's tube and what her limitations may be around snack time. I explained that she used to but that she aged out of special education at age three as tube dependence doesn't qualify as a disability. The teacher's response was to tell me that Olive must be just fine then and that I should feel lucky.

Olive eating banana slices for the first time ever after Juniper tried them.

I share all of this to give a little context to life with a tube fed child. It is isolating, and there are days where it feels like it touches every aspect of our lives. It is heartbreaking to see Olive falling farther and farther behind her peers. She is four and cannot consistently drink from an open cup. She prefers to use her tongue like a puppy dog.  She doesn't partake in birthday treats at school because eating a cupcake is scary for her. And at six months old Junie has started to eat solids, and she shows instincts that Olive has never had. We put a puff in her mouth for the first time, and she started chewing. It took Olive two years to even attempt that. It is incredibly bittersweet and heartbreaking to see them sitting at the table together both learning to eat, knowing that in the not so distant future Junie's skills will surpass her older sister's.

The best dad around.

Tube feeding not only affects Olive, but it affects our entire family. Tube dependency can be absolutely overwhelming, and it is easy to let it affect family morale when we deal with it so many times a day. We can't sit down to a family meal without micromanaging what Olive is eating and reminding her to chew and move her food to her molars and to swallow and not to hold food in the front of her mouth and to take smaller bites. We're also supposed to encourage her to eat without actually saying you need to eat this. And we are supposed to do separate mouth exercises to build strength as her mouth fatigues easily. It's exhausting and stressful. And it is not sustainable long term. We need a change, which is why we have decided to pursue a tube wean on our own.

Enjoying a "melt" at the malt shop.

Thanks to a baby that hates to sleep by herself, I have had a disproportionate amount of time this winter to read and research things on my phone in the middle of the night. Many weeks ago I read this article in the Times, and it struck a chord with me. I agree with so much of it, and it gave me a renewed sense of purpose and direction in our tube feeding adventure. I decided that we need to actively try to wean Olive from her tube. I mentioned it in passing to her pediatrician, and she was nothing but supportive saying what do we have to lose? Of course I know what we have to lose. Morale. Confidence. Weight. The last of which would be the hardest as I feel like I have personally fought for every pound that Olive has put on over the years.

But as hard as it will be, the time has come. Thankfully Olive finally has the skills to be physically able to eat enough calories to sustain herself. We have put in all the work for the past four years, but we have been missing a key piece. Hunger. We've never allowed her to feel hunger because we have been preoccupied with her growth and development and providing the calories and nutrition to achieve that. I'm the first to admit that it's not a good time to do a tube wean but also that it will never be a good time. So we are taking the leap.

Testing out her new wheels.

If expense wasn't a concern, we would be on a plane back to Virginia to participate in a formal tube weaning program. If we could attend the Encouragement Feeding Program now like we did in 2014, I think we would be wildly successful with all of Olive's progress. There is also another very popular and successful program in Virginia through Spectrum Pediatrics. However, the time, money, and energy that would go into planning for these trips and getting them approved by our insurance would be huge. There are other options available such as No Tube out of Austria and Markus Wilken's program that are done remotely via Skype, but these too are considerably costly. I am simultaneously looking into a feeding program at the University of Iowa, but we've decided our first step will be to try it on our own at home. As terrifying as that is.

Pre-kindergarten screening already!

Today we meet with Olive's doctor for a final weight check, and with the support of her, our feeding therapist, and our dietician, this weekend we plan to trial a rapid tube wean for Olive. This means that on Friday we will only tube breakfast and dinner. On Saturday we will only tube dinner, and on Sunday we will tube no meals. We will, of course, tube water and/or pedialyte if hydration becomes a concern. We are obviously not going to let her become dehydrated. This is huge for us. She is going to have her first true hunger trial.

From what I have read, for a child that is unfamiliar with natural hunger cues and what that feels like, it can take anywhere from 7-14 days for it to kick in. The hard part will be waiting that out. The guidelines we have established with her doctor are that we are willing to let her lose 10% of her bodyweight. For her that is about two and a half pounds. I expect that she will turn into a surly child as she grapples with new feelings in her body. I expect that she will be unhappy and throw tantrums. I expect that she will be tired and cranky and not herself. I expect that she will eat mostly crap, and I will miss the food that we have been able to surreptitiously give her through the tube. I expect that it will be unbelievably stressful to watch this happen and hard to be encouraging and positive and to give her every ounce of love we have in us. But what scares me the most are the things that I haven't thought to expect.

The three of us at home....per usual.

We will of course be keeping track of her oral intake and hydration, which is tedious work. But we need to have a baseline knowledge of how much she is taking in. Her dietician has provided us with a target for hydration as well as calories. I know that we will not come anywhere close to the calories for at least the first few days if not longer, but hopefully she will at least be willing to drink water and milk throughout the day. I'd like to say that I will update our blog as we go, but the more likely scenario is that it will be all hands on deck all day long, especially with a baby in the mix. We will of course have frequent visits with her doctor, but the onus of whether or not this is successful is on us and me in particular as I spend the most time with Olive. I've talked myself into and out of this more times than I can count over the past few weeks, but barring illness, we are committed at this point.

Our happy girl.

We believe that Olive will eat on her own someday, and we want nothing more than for her to have the internal motivation to do so, which is why we have always used a gentle, child-centered approach. We do not force feed, and we do not believe in a behavioral modification model where we bribe her to eat. Our number one priority is her well-being so while we are willing to let her temporarily suffer in hopes that she will have long term success, we know that we can pick up where we left off with the tube feeding if it becomes too distressing for anyone involved and then try again in a few months or pursue another feeding program. Suffice it to say we are cautiously optimistic. Here's to uncharted territory and what lies ahead!