The End of an Era

Tube Wean Day 1

Three years ago we sat across from a doctor, as I held a then fifteen month old Olive who ate nothing by mouth, and listened to him tell us that if a baby isn't eating by one year old, she will probably never eat. Then he paraded in a dietician who explained to us that they could not support a diet of real food for our child like we wanted and would only allow the use of commercial toddler formula through her tube when her breastmilk supply ran out. This was in 2013 at a major children's hospital in a large metropolitan area, and there is in fact no scientific basis for either of those absurd medical opinions. If I had those conversations today, I would be an unbelievably fierce advocate for my child, but at the time we were exhausted and overwhelmed and alone as we quietly sulked out those doors intentionally, and without any discussion, foregoing the stop at the desk to schedule another appointment. Because it goes without saying that we will always choose hope. Hope is what held us together through our tube feeding journey. We have always believed in Olive, and we have always believed that someday, somehow, she will eat. And I cannot believe that I am writing these words, but...that day has arrived.

The early days of our tube wean.

It is amazing and bizarre and life-changing for all of us. Somehow this big moment we were waiting for snuck up on us.  It happened through a series of changes, some noticeable and some remarkably subtle lost in the daily grind, but as a result we are standing in a vastly different reality than we were just four months ago. We have not tubed calories for Olive since we set out on our plan to wean her on our own in mid-March. And we have not tubed water for the past month. Our blender, once a twice daily part of our lives, has been gathering dust. Olive is eating and drinking everything on her own, and we hardly give her tube any thought except to flush it with a small amount of water once each night while she is sleeping to keep it clean. 

So much attitude.

I wish I had the energy to share the details, and hopefully someday I will, but I will share the condensed version. We followed our plan to try a rapid, home-based wean. I was the impetus for this, but we had the unwavering support of her pediatrician and her feeding therapist. Over three days we went from tubing about 80% of her calories to tubing zero calories, knowing that it was going to cause her to lose weight and potentially negatively affect her mood and sleep and nutrition. After four years of a meticulous tube feeding schedule with very conscious nutritional choices, this was hard to do. It took a long time for her natural hunger to kick in. So long that I'm not even sure when it happened. We had to encourage every single bite some days, especially in the beginning. The end of March and April and beginning of May were incredibly high stress for me

Flying to Florida. 12 hours later she was sick.

And she lost weight. A lot of weight. We started at 27.5 pounds and agreed with her pediatrician that she could lose 10% of her body weight, which we knew would be devastating for a second percentile kid. By the beginning of May, and following a week long illness, we hit that rock bottom, and I fought back tears as I saw that number come up on the scale at the doctor's office. Our child was truly skin and bones, and I winced as I picked her up and felt her ribs poking through her shirt. I thought that was the end of our tube wean. I really did. And I was relieved thinking about it because the stress of getting her to eat would ease up. She was eating more and her skills were improving daily, but I would have bet anything in the world that we would have left that appointment and started tubing calories again that night. Yet somehow our amazing pediatrician encouraged us to give it just one more week, even against my own judgment. And that week made all the difference.

A really tough point in our tube wean with a sick Olive on vacation.

Olive recovered from her illness and started to eat more. It was a subtle increase from day to day, but if we looked at it in terms of a week or a month, it was truly unbelievable. And she began to gain some of the weight back that she lost. We had weekly and sometimes twice weekly visits with our feeding therapist, and she would always have great ideas for new foods to try and ways to encourage Olive to use her mouth more efficiently since chewing could take her quite a bit longer than it does for an average kid. And through all of this we sold eating every step of the way. Olive is obsessed with being able to go on a big rollercoaster so our best pitch to her is that eating healthy food and drinking milk and water will make her taller for the big rollercoaster. The mind of a four year old is a fascinating place. Because eating is still not exactly intuitive for her. In fact, many days it is still work. She gets that we all eat, and she knows our routine for when we eat meals and snacks. But I'm not entirely sure that she has a biologically driven desire to eat or a normal hunger-satiety cycle yet, which is not really a surprise for a child that was tube-fed for the first four years of her life.

A fruit arrangement delivery from her feeding therapist.

On any given day, I know exactly what Olive has eaten, and I need to sit with her at every meal and encourage her to eat her food. It is still stressful, and I'm obviously still afraid that she will stop eating, even though that seems highly unlikely at this point. I like to think that we are moving more towards normalcy in a sense that most parents of four year olds probably have to dictate mealtimes to some degree whether it be saying you need to sit at the table or you need to take a few bites before dessert, etc.. In Olive's case, she has never had to slow down or sit down for meals before. We tube fed on the go, anywhere and everywhere, while she was playing and while she was sleeping so it makes sense that it's a difficult adjustment for her to now be suddenly responsible for all of this eating. I also like to think that maybe six months from now I will not have to be the eating dictator, but for now, I make sure that she eats three meals and two or three snacks each day so we have the peace of mind that she is getting what she needs nutritionally and growing. 

We went to the doctor for a weight check a few weeks ago and I once again almost cried when I saw the number 28 appear on the scale. This time, however, it was happy tears because we not only reached our pre-wean weight, but we surpassed it. Of course 28 pounds for an almost four and a half year old is the tiniest of the tiny kids, but to us, that number is everything. It is hope, and it is progress. And then as Olive was running around the room alternating between pretending the exam table was an airplane and loudly ripping off the paper and running pieces to the trashcan and Junie was busy pulling my hair and trying to eat a button off of my shirt, our doctor asked me when we were going to take the tube out. That moment was lost in the chaos that is taking two kids to the doctor by yourself, and it actually took me awhile to process it. But we have somehow arrived at the point where we are talking about taking Olive's feeding tube out. Forever. What!?

Last day of preschool.

The magnitude of this turn of events is life-changing for us. A year ago I thought I may very well have to go to kindergarten each day to tube feed Olive her lunch. Today we can stop at Chipotle and know that Olive will eat lunch on her own without us needing to schedule our day around it or bring a cooler bag and tube supplies. She has already had a summer packed full of camps and new experiences, and she has been just like every other kid with her snack and her water bottle, happily giving me a hug and not so much as a second look as I leave her in all of these new places. This is truly a blessing because even over the winter she was still occasionally vomiting from nervousness when I would leave her. She hasn't thrown up since we stopped tube feeding her, which is amazing.

Our happy girl.

Most importantly, she is eating so much food. The quantity and variety of food that this kid eats leaves me in awe when I think about it. One year ago we would be lucky for her to eat a spoonful or two of goat cheese. This week she's had a hot dog with mustard and ketchup and bun, sautéed kale, sandwiches with mustard, meat, cheese and bread, lots of fresh fruit, cereal, and even a few attempts at raw carrots. Her skills are quickly improving, and she is so open to new textures and flavors. Last week she happily tried salad with sliced radishes, strawberries, cheese and balsamic vinaigrette. Then she look up and exclaimed, "Why is salad so yummy?" Seriously. Our child is excited to eat salad. We are beyond proud of our little peanut because we know exactly how far she's come and how hard we've all fought for this day. It's wonderful and every bit as rewarding as we thought it would be. 

The summer of fun for these two.

And now we're talking about removing her feeding tube. Of course this scares the daylights out of us. But it's the next step. Many children can just have the tube taken out (which we could do at home) and the stoma will close and heal. Fairly often, however, surgical closure is required, and in Olive's case, she has a large piece of granulation tissue that has grown around her stoma which requires surgical removal regardless of whether or not her stoma closes. She also has a birthmark mole on the top of her head that we've known for a while needs to also be removed as it is a type that is likely to become cancerous later in life. Since we know she needs two surgeries that require general anesthesia, we are planning to have them performed at the same time to avoid any more anesthesia than absolutely necessary. I've scheduled surgery consults in early August with a plastic surgeon and a general pediatric surgeon, and if everything continues to go well, we are thinking of saying goodbye to this tube in the fall sometime. 

Olive and Dr. Hoekstra.

Olive's tube removal has been our big picture goal for four years now, and it is surreal to be able to say that we reached this goal. Four years of tube feeding was a long time. It changed all of us, and it certainly pushed us to our limits at times. But at four and a half years old, we finally have an eater, which brings me back to the doctor that I mentioned at the beginning of this tale. I guess if we had listened to him we would have just accepted that our child was never going to eat, and we would have stopped looking for feeding therapists and feeding programs and people to help us. The very best decisions we've made along this journey have been to trust ourselves and to seek second opinions and to never give up. Of course no one will ever believe in a child like a mother and father, but we've been very blessed to find doctors and a feeding therapist and teachers that have believed in Olive as much as we have. A highlight of our year was Olive's final NICU follow-up clinic visit with Dr. Hoekstra, a doctor who cared for her when she was at her sickest and saw us through our darkest days. And he continued to help us throughout the years, whether it be with insurance appeals or referrals or moral support, which is a powerful thing. 

Her most favorite food: gold chocolate coins.

You need to look back to realize how far you've come, and honestly when I think about where we started, time has already started to soften the experience. It doesn't seem that bad in hindsight. But then I watched an Olympic trial recently and remembered the last time the summer Olympics were on. It was the first summer Olive was home. The summer when Dain was working long hours, and I was home all day trying to figure out how to tube feed a medically fragile baby that was vomiting 8-10 times a day while pumping 10 times a day and holding this little being that didn't want to be set down. We couldn't leave the house or socialize for fear she would get sick, and there were days when I felt like I was suffocating inside these walls. At one point I even came up with what I thought was a completely genius solution in that Dain and I would get a divorce and then I would finally have a break as surely he would take her every other weekend. That was an honest to goodness lucid thought of mine as I waded through the difficulty of caring for a tube fed baby, the utter exhaustion that comes with a child that needs round the clock care, and probably a dose of ptsd from our NICU days. It was intense and the daily routine was unrelenting. And those Olympics in London provided the escape I needed. I've never shown up for an Olympics like I did that one. Olive and I watched every single broadcast that was on our television while we went about our daily existence of diaper changes, vomit cleanup, clothes changes (for both us), tube feeding, pumping and walking up and down our hallway. We invested in every athlete's vignette, felt the heartbreak of every loss and cheered for every win. My tiny baby that needed to be held all day and threw up 8-10 times each day loved the blue Olympic pool on our television, and it was this magical, mesmerizing thing that I could hold her in front of it and she would stop crying. We have never been bigger fans of swimming. This August we'll show up too, but it'll be amidst running out the door to nature camp and dance class and soccer and all of the things and to all of the people that fill up our lives now. It's the end of an era, and we consider ourselves lucky to be walking out the other side of this with an eater and with our family intact and thriving.

Amazing family selfie, am I right? This is us today.

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!

FOUR

We suddenly have a four year old. How is that possible? It seems like I blinked and she's a year older. Yet it also seems like we've always had Olive because we can hardly remember life without her. Following her birth we received two shiny copies of the book "On the Night You Were Born." I tucked them away in the back of her closet, thinking to myself that the night Olive was born is not the kind of magical night celebrated in that children's book. I received a third copy for Juniper, and it now sits on the little shelf in the nursery as part of our regular afternoon rotation that Olive chooses from for me to read to her and Junie. Because four years later, I can now see Olive's birth as a celebration. And celebrate we did.

In full disclosure, we probably over celebrated Olive's birthday this year. And by probably, I mean that we absolutely went overboard and totally overcompensated. For her early start. For the years that we didn't leave our house let alone celebrate birthdays with family or friends. For the birth of her sister. Because that has been immensely life changing for Olive. That being said. Olive's birthday week (as it turned into) was a special, fun and action packed extravaganza. The Sunday before her actual birthday, we were in my hometown of Rochester for Juniper's baptism at my family's church, and we rolled that into a Peppa Pig birthday party for Olive with all of our immediate family and some close friends.

Then she had a celebration at school on Thursday, where she got to wear a birthday crown and bring treats for her classmates. We chose little cups of m&ms because Olive loves them, and they are easy to eat. A lot of kids bring cupcakes for treats, but Olive really doesn't know how to eat something like that yet so we steered her towards something in her repertoire. Of course they were a big hit with the preschool crowd, and Olive had a great day at school. The following day we surprised her when she woke up with an envelope that contained a light rail ticket and an itinerary for the day. We basically planned Olive's perfect day.

It started with me (and the carseat hater) dropping Dain and Olive off downtown at the light rail station. She has been talking about the light rail for a couple of years so to say she was excited for her first trip would be a complete understatement.  They gleefully rode the light rail to the Mall of America where Olive proudly donned her unlimited ride wristband and spent the day going on every ride she was tall enough for at Nickelodeon Universe. This is the girl that can still to this day walk into a place she has been many times before and get so nervous she throws up. Yet she goes on amusement park rides with absolute wild abandon. Loves them. All of them. She didn't even want Dain to ride on the ones that she was tall enough for all by herself. We often find ourselves asking who this kid is and how she got so big.

Later in the afternoon, Junie and I met them at our hotel for the night that is connected to the mall. After we checked in, we took the skyway back to Nickelodeon Universe so I could witness Olive's first trip down the Log Chute, which she was just tall enough to ride with Dain. It's a pretty intense ride, with a significant drop at the end into a pool of water. She loved it of course. No fear. Then I rode a few rides with her, and we topped it off with a family ride on the ferris wheel overlooking the amusement park before deciding to grab something to eat.

Dinner was mostly a disaster. We should have obviously gone to a quick and casual place but instead decided to have a sit down dinner. Our first two choices had unmanageably long waits so we settled on a new Mexican restaurant that had an open table. Olive's gigantic not-at-all kid sized milk came in a styrofoam cup, which she had never encountered before. She made an understandable rookie mistake and squeezed her cup, pushing her fingers all the way through causing probably twenty ounces of milk to spew all over her, the table and the floor. Then she started shrieking that her pants were wet. Indeed they were. I haven't left our house without a change of clothes for Olive in four years, but of course today was the day that we had changed things around since she was with Dain for the day and we'd packed her stuff separately. Rookie parenting mistake. Dain had to take her back to the hotel to change and hustle to the restaurant again, while I fended off the tableside guac, trying to explain that we needed to wait until the birthday girl came back as she was excited to see it. After that fiasco I think we also dropped some silverware on the floor and basically shoveled food into our mouths while alternating holding a wiggly baby that's not quite big enough to sit in a high chair. Needless to say, we were happy to be back to our hotel room and call it a night.

The next morning finally marked Olive's actual birthday. January 30. The big FOUR. We had a birthday breakfast at the hotel restaurant, where Olive felt pretty special getting a stuffed animal. Then we hit the pool, where she happily splashed around finally being able to "swim" by herself with the help of her new lifejacket. Junie was not as thrilled about the water. After swimming we checked out and headed back home for a fairly relaxed day in comparison to the week's excitement. Olive chose chocolate donuts for her dessert that night, and she announced to us that we chose really "fancy" ones. We lit her birthday candle and sang to her...twice. Because she asked for an encore. She went to bed a year older and a happy girl. Perhaps we set the bar too high, but birthdays will always be a big deal around here.

Olive also had her four year checkup this month, and it went well. She is, of course, still a peanut clocking in at the 2.35 percentile for weight and around the 12th for height. But she follows her own curve. We have pumped her full of calories her entire life, and it seems to me she is just destined to be on the smaller side. And that is okay. She checked out as healthy thankfully and her development is typical for her age. We've had a few issues pop up like night terrors and a newfound anxiety about many things like school and getting lost and not knowing where I am at all times and of being scared by Dain if he comes home without Olive knowing. Her pediatrician pointed out that it's really a sign of maturity and more complex thoughts that she even thinks to worry about these things. I pray that it is just a phase because it really affects our daily lives.

Her pediatrician also finally gave us the go ahead to turn her carseat around to be forward facing. Yes, I know. We are pretty much the only people we know who had a four year old still rear facing, but with a petite kiddo it was the safest decision...as her pediatrician gently reminded us for years by saying that it was our decision but that the research shows rear facing is much safer, especially for smaller kids. Science wins. Always. And guilt trips. She is a big fan of the forward facing, and it has of course spawned even more questions from her in the car. We talk about our state park sticker on our windshield every day. In fact, she talks from the moment she wakes up until the moment she finally concedes defeat at night drifting off to sleep against her will. And while I fully admit that she can drive me bonkers some days, I also have moments where I look at her in awe and remember that she didn't really speak until she was two and half years. Or I watch her carefully write her name on 36 valentines for her classmates and think how is this possibly the same kid who they told me would certainly have learning delays. And maybe she will, but she is smart and sweet and kind and we're pretty damn lucky to be where we are four years later.

And now that she is a year older, we have decided to take a leap of faith and make a big change. She remains primarily tube-fed, with around 80-85% of her calories coming from our homemade blends that we tube for breakfast, lunch and dinner. For a variety of reasons, we have hit a wall with the tube feeding, and we are desperate for improvement in Olive's oral eating. As a result, we decided that we are going to attempt a home-based tube wean for Olive. I don't know exactly what this will look like yet, but it's in motion for mid-March. This will surely be a terrifying and emotional process, but hopefully it will be wonderful as well. Because she deserves a shot. To feel hunger. To eat on her own. To not have food and water pushed into her tummy morning, noon and night. To have a mom who doesn't have to double as a feeding therapist. Does she need the tube or is it just a long-standing habit that we are are unnecessarily relying on? I honestly don't know, but I'd like to find out. More to come on this. 

One Year Out: Olive the Eater

We are officially one year out from our adventure to Virginia to participate in the Encouragement Feeding Program, and Olive is eating. Actual food. Mac 'n cheese. Pizza. Watermelon. Strawberries. Lots of cheese. Bread with peanut butter. Granola bars. Pancakes. We are kind of freaking out about it over here. She has made so much progress in the past five months. It is unbelievable. Is she eating a large volume? No. Is she doing it all on her own without large amounts of encouragement and motivation? No. Is there a reward system in place where she earns stickers to watch her bestie Peppa Pig on the iPad? Yes. Is it an easy, stress free experience? Nope noppity nope. BUT. She's doing it. One bite at a time.

The Peppa Pig reward chart from Ms. Heather.

In June we started seeing our favorite feeding therapist once a week again after a year long hiatus. There are ebbs and flows in progress with eating skills and times where a break is valuable, but our therapy gap was purely due to our medical insurance. As any parent of a medically complex child can tell you, insurance is a pain in the ass. They don't want you to get the best care for your child. They want to save money. Plain and simple. It's a business. A business that profits around $5.5 billion each year in the case of our insurer, and profits inexplicably rise as consumer health care costs continue to soar. And Olive's feeding therapist, the only one of ten that we've seen that has been helpful, is out-of-network.

Working on mouth exercises at feeding therapy.

Thankfully I finally managed to get her approved at in-network benefit levels, but it was a lot of work involving requests and denials and appeals of denials and a whole bunch of paperwork. We received help from her pediatrician and the NICU follow-up clinic, with the doctor there suggesting that I try again as previous attempts had failed. Persistence is key when it comes to insurance battles, and it paid off as we were allowed to have twelve visits (one per week) with our therapist beginning in June. We now have to ask our pediatrician to request a renewal of this prior authorization in order for twelve more visits to be approved, but this will hopefully continue indefinitely as we are now on our second set of twelve visits.

Olive's first ice cream truck experience.

Ms. Heather, as we call her, is a solo practitioner with a small office in Edina, and Olive loves her. So do we. She is a speech pathologist by trade with expertise in feeding issues. I think it was partly that Olive was ready to advance her skills and partly due to Ms. Heather's help, but at the beginning of the summer Olive started to make some serious progress. Most notably is that she finally caught on to the whole biting and chewing element of eating. She was nearly three and a half before she ate a goldfish cracker, but she finally learned how. It started with the baby goldfish, and now she is plowing through full size crackers like cheddar bunnies, cheddar squares, animal crackers, butter crackers, and goldfish. She has a large repertoire of "dry, crunchy foods" that she eats, her favorite being pretzels. With Ms. Heather's help and lots of practice placing food on her back molars (or "chompers" as we call them), she learned to take bites with her front teeth and chew with her back teeth. This was years in the making, and it took a lot of times choking, gagging and vomiting to get it down, but one day she mastered it without us even realizing it.

The aftermath of shaker cheese.

She also started working on softer foods like bread and noodles and all the variations of those items. Bread can still be difficult for her, but she works to "smush and smash" it on her "chompers." She has blown us away with her emerging ability to eat so many things. Buttered toast. Cheese quesadillas. Cheese pizza. Pita bread. Spaghetti with marinara sauce. And her most favorite food of all? Cheese. She is a cheese lover. Shredded cheese. String cheese. Shaker cheese. Cubed cheese. Spreadable cheese. It is her go to food, and she is really good with it.

Dining al fresco in the backyard. The chipmunks love her.

If you ask Olive what she wants to eat, she will inevitably say, "String cheese, pretzels and cheddar bunnies." That is her comfort zone right now. She will sometimes say "fancy cheese" because we ARE fancy, and we occasionally buy the Cracker Barrel cheese on sale at Target. She will happily eat that if cut up in small cubes. And when I say small, I do mean small. People are always surprised when they see exactly what I mean by a "small piece." It's about the size of a rice krispie for most foods outside of her comfort zone and perhaps just slightly larger for cheese chunks. Because if you leave her with larger pieces and the instruction to take bites or nibbles, she invariably shoves it all in her mouth and struggles with it. It is still work for her. Hard work. She doesn't always want to eat, and she rarely wants to eat new and scary foods without a lot of direction and help, which has been difficult to give in the wake of her sister's arrival.

Practicing her blowing exercises at home.

Ms. Heather gives us "homework" to work on each week, which typically includes some mouth exercises with chewy therapy tools to work on things like jaw strength and food placement, some directives about meal times, some directives about food choices, and sometimes new ideas for tweaking our tubing schedule and amounts in hopes of slowly weaning. With Ms. Heather's help we have been able to cut out Olive's morning tube snack, afternoon tube snack and late night snack in the past few months without seeing a slide in her weight. This is huge progress. Instead of six times a day we now only tube feed her four times a day, with the fourth one being only water for extra hydration after she goes to bed. This means she has to eat orally to make up those calories.

Raspberry picking.

We are supposed to normalize oral eating and mealtimes at this point, but it's hard to not feel the added pressure to make sure she drinks milk and eats a significant amount of food throughout the day as we cut back on the tube feeds. Our biggest hurdle is the volume she takes in. It is still small. I honestly don't know how it compares to a "normal" three year old. On a good day she will sit down for a snack and have ten pretzels, five cheddar bunnies and half of a string cheese along with three ounces of whole milk. On a bad day she'll have a few sips of milk and one pretzel. And while I think that is in line with what typical children do, it's hard when you have the onus of the third percentile hanging over you. But it seems that no matter what we do, she is just a small kid and probably always will be.

Summer calls for extra hydration. We tube feed anywhere and everywhere.

We are incredibly proud of her progress and determination to learn how to eat. It's really mind blowing in comparison to one year ago when we were in Virginia at the feeding program. Back then she could basically only eat goat cheese and other super soft, dissolvable foods in tiny quantities. She can now handle difficult foods that require a lot of oral motor skills like biting, chewing, and moving food around with her tongue. But it's still a work in progress. And now that we had that burst of progress we are settling into a lull in the progress. She still can't eat things like apple slices or carrots. Things that her peers gobble up at snack time at school. But we are confident that she will learn in her own time.

She ate this entire pancake with syrup.

It's important for us to be realistic with our goals for Olive. Our end goal is obviously for Olive's tube to be removed and for her to eat 100% of her food orally at some point. We used to say by kindergarten, but I don't know whether that is a realistic goal for us anymore. We've adjusted our expectations, and our new goal is for Olive to be eating enough at five years old to be able to go to kindergarten and not need to be tube fed during the school day. That is our reality. I would of course do anything for Olive, and if that means going to her school every day for lunch and tube feeding her, I will. But that is a last resort. I firmly believe that if we keep working on it every day at every snack and at every meal, we can get there. We may still need an early morning or late evening tube feed, but that's ok too. It's impossible to know where we'll be. For now, we are just plugging away with the eating while still blending her tube meals to give her the best nutrition we can.

First day of preschool. September 2015.

In other news, Olive started preschool in September, and she absolutely loves it. It is a small neighborhood school that we can walk to, and she goes three mornings a week for two and a half hours. She was so ready for it, and she is truly blossoming there. Last year she threw up from anxiety pretty much every time we went to our mommy and me class and swimming and gymnastics. This year she threw up once: the night before school as she laid in her bed after we tucked her in. As I was taking her out of the shower following the clean-up detail, she looked at me with her big brown eyes and said, "mommy, I was nervous for my teacher." And that's what it was: nerves. But the next day she walked into school so excited and confident that I almost didn't recognize her. She didn't even bat an eyelash when we said goodbye and walked out the door. She has looked forward to it ever since, and she wishes she could go every day.

 She insisted on going in the pumpkin like her sister.

She is learning how to socialize and play with other kids there, and she even has the opportunity to stay for lunch sometimes, which is great practice for her to be with her peers as they eat. She also gets this opportunity at snack time daily. We discussed Olive's eating issues with her teacher of course, and thankfully she has been wonderful about it. We send a reserve of easy snacks for Olive (cheddar bunnies, veggie straws, etc..), but we've also asked that she be able to try what everyone else is eating too if she's interested. I didn't believe it when her teacher told me that Olive ate a good amount of yogurt from one of those squeeze tube things. She's always surprising us as she has never done that at home. Peer pressure can be a wonderful thing at this age for a kid that has no concept that most kids don't eat like she does. Normally our philosophy is more "you do you," but with eating we would love for her to want to be like everyone else at the table. Now if only I could get her to tell me what she ate for snack at school. She almost always reports that she ate a custard donut. I confirmed with her teacher that they have never in fact had custard donuts for snack. Daddy pig, however, is a big fan of them in Peppa Pig.

The doctor and her patient had a splendid Halloween.

The biggest change in Olive's life is obviously the birth of her sister. Olive was the be all, end all before September, and her life changed in a very dramatic way. She is no longer the center of attention, and I flat out don't have the time anymore to work with her on her eating as much throughout the day. Little miss June has been a handful in ways that I never anticipated before her birth. I never thought about the fact that I may need to tube feed Olive while holding or feeding a baby. It has really upped my multitasking game, and Olive is not happy to share the attention. It hasn't necessarily brought out the best in any of us. Olive acts out, and we get frustrated and respond with anger more than we should. Change is hard for us, and it always has been. But in time we are all adapting to our new family, and Olive is truly a joyful little girl. She is proud of her sister, and she really can't wait to be able to play with her. While this fall has definitely been a season of flux for us, I'm hopeful that we will settle into our routines and all be able to take a breath after a chaotic few months.

Olive and June.

For now I am ensconced in the daily grind of tube feeding and oral eating and working on eating skills with an almost four year old while also breastfeeding an almost three month old, which is an eight or nine times a day commitment. I hate to use the terms "normal" or "typical" because what does that truly mean and who fits into this cookie cutter mold of normalcy? And really who wants their kid to be just like everyone else? But it has been odd to have a "typical" baby in Juniper. She is eating and growing and developing normally, and while that is amazing, it has also led to some heartbreaking moments. When we gave Juniper her first bath at home with Olive there, Olive looked at her baby sister in the bathtub and then looked at me and very earnestly asked, "mommy, where is her tummy tube?" My heart broke for her in that moment as I watched the realization on her face when I explained that Junie doesn't have a tummy tube because she wasn't small and sick when she was born. I think that was honestly the first time that Olive realized that having a tummy tube isn't just something that all babies or little kids have as she may have thought. She moved on quickly of course, but I still dwell on it as it makes me worry about the future and whether Olive will feel different or have her feelings hurt when other children notice her tube or how she eats differently. And at some point in the not so distant future it is likely that Juniper's eating skills will surpass Olive's. My only hope is that Olive is motivated by that and not disheartened.

Careening down the hill on her favorite ride.

Far from average, I'm thankful that Olive is herself: an opinionated, feisty, little spitfire. It will serve her well in life. When she was still in the NICU weighing in around three pounds a nurse looked at me and said, "well, you're not going to have to worry about her on the playground." I know exactly what she meant by that. Olive is a willful, spirited child, and she certainly never settles for the path of least resistance. She wouldn't be here if she wasn't tough. Her life started with a fight, and in some ways she has been fighting ever since. I try to remind myself on the really hard days with her that she is amazing in how far she has come.

Dain holding Olive at one week old so she can be weighed. February 6, 2012

November is prematurity awareness month, and I've had a constant reminder of this on social media with accounts I follow like the March of Dimes. While Olive's start as a micropreemie no longer defines her, it obviously still affects her life. She's not a "typical" preschooler. This past week she has been sick. And while I caught myself telling somebody that it is "just a cold" for Olive that means that we have to do tylenol through her tube and extra hydration through her tube and clean up round after round of vomit because she coughs so hard that she throws up. All from "just a cold." And it has been a major setback for her oral eating. We were preparing to cut back 25% of her tube calories to try to stimulate more hunger and increase her oral volume, but that will now have to wait as she has essentially stopped eating more than a bite or two for snacks and meals in the past ten days. It's beyond frustrating, but in the grand scheme of everything Olive, it's a minor setback. We know that she will bounce back in her own time and continue to amaze us as she has from the beginning. Her survival wasn't a given, and her world was incredibly small living in a plastic box for three months and then hardly leaving our house for two years. But coming up on her fourth birthday, the world is hers, and she's not just surviving anymore, she's thriving.