Life After the Tube

Wish List: Slackers Ninjaline Kit and a Ride-on Car

It is official. After four and a half years, we said goodbye to the tube. On Tuesday, September 20, 2016, Olive's feeding tube was removed, and the site was surgically closed. It was unexpectedly emotional for all of us and not quite as smooth sailing as we anticipated, but we are incredibly grateful to be entering the holiday season tube-free and healthy. The best gift this year is that we will celebrate Olive's fifth Christmas with a little girl that will delight in her stocking candy, ask for seconds on her cheese, and eat all of her holiday food on her own for the first time.

We awoke early that day, before the sun came up, and the three of us hurriedly plodded to the car with way more baggage, literally and figuratively, than an anticipated one night stay would require and drove to Children's Hospital in Minneapolis. I still cannot make that drive without having all of our memories flood back in. My mind bounces between the face of the happy, thriving four year old that sits in the backseat quizzing me about what exactly would happen at the hospital and that of the five pound baby, in the same backseat, whose face was engulfed with oxygen tubing whom I sat next to as we reversed our course and came home for the first time as a family of three after months in the hospital. The route still carries the weight of the first night that Dain and I left Olive in the hospital, when she was five days old, and I collapsed into his arms sobbing in the skyway on our way to the car as I came to grips with the reality that we were going home and our child was not. We have made that drive so many times without Olive, to see her, that it still seems odd to be going there with her. And to be heading there to remove her tube, the last physical remnant of her difficult beginning in this world, was surreal. Of course our lives have moved on from this in so many ways, but beneath the surface, it's all still there somewhere.

Waiting for her name to be called on surgery day.

We checked in at our allotted time of 6:45 a.m., and Dain and Olive headed to the play area while I filled out the remaining paperwork. Olive was blissfully unaware as Dain and I did our best at pretending that we both weren't secretly terrified of our daughter having surgery. They called us back to the pre-op room, and it was quite a whirlwind from there with visits from admission staff and nurses and anesthesiologists and both surgeons (she also had a lesion removed from her scalp) and a child life specialist to calm her nerves. The one thing that stood out is the amount of questions about her lungs. These people do their homework, and when they look at Olive's history the obvious questions are how damaged are her lungs now, how often does she use nebulizers, does she need oxygen when she gets a respiratory infection and what medications is she on. And when we respond that her lungs are fine and that she needs none of the above, they all pause and remark on how amazing that is. And that right there is vindication for everything that we did to keep Olive healthy for the first two years of her life even when people actually told us that we were being "crazy." Crazies for life.

The allure of the call button.

The anesthesiologist threw us for the biggest curveball when he brought in two oral medicines, Benadryl and something that he promised would fog her memory as if she'd had a lot to drink, and looked at us noting that we'd probably be better to give it to her since we were used to it.  Haha, nope. Funny story but we had actually never given Olive oral medication before since we always had the tube and obviously used it instead of facing that battle. We played it cool like we could totally handle it, but we made a scene as we tend to do. After we struggled, and that's an incredibly charitable way of describing those events, Mike the anesthesiologist did an about face and offered to do the second medication because "sometimes it's easier for me to be the bad guy." Indeed, Mike. Indeed. And then Mike looked at me and advised that while one parent was welcome to come back into the operating room until Olive was asleep, it was sometimes better to not go back, especially if you were going to be emotional or make the child more nervous. Dain's face failed to belie his steadfast agreement with Mike. He certainly thought he'd hold it together if he were the one to hold her hand as she was put under, and obviously he would be the solid bet. But this was one of those things that I knew I had to do, despite everyone's apparent lack of faith in my ability to do it without totally alarming everyone involved. Yay motherhood.

The glowing toe.

In a way this was my full circle. On January 30, 2012, it was her and me in an operating room alone awaiting the moment that would define our lives for years to come as the strangers around us carried about their work day. And much like the day she was born, this day wasn't easy. Putting on a brave face when you are absolutely terrified is tough, but I showed up for Olive and Dain. I resisted my urge to cry as Dain said his goodbye, and I instead focused on Olive's fixation with admiring the glowing light of the pulse oximeter on her foot. We stopped at a station in the hallway where I donned a gown and a mask, and I continued to blather on to Olive about mindless and mostly unrelated things. We pushed through the operating room doors into the bright lights and all of the people, and we continued our conversation about her glowing toe as we slid her onto the operating room table and they began to administer the anesthesia through a face mask that she had personally slathered with none other than Dr. Pepper flavored lip smackers carefully chosen from the child life specialist's plethora of scents. They warned me that sometimes kids fight it and how normal it was, and our child came out fighting so I wouldn't expect any less, but it was a little bit unnerving to have to hold her down as she repeatedly tried to rip her face mask off. They pointed out to me when her eyes stopped focusing, assured me she would have no recollection of the morning's events and before I knew it she was peacefully asleep, her hands that have always fit so perfectly in my own, limp and cool. I felt panicky inside and was suddenly sweating profusely but was still outwardly holding it together as I followed someone's instructions to remove my mask to kiss her, tell her I loved her and that I'd see her soon, and turn towards the door where my escort was leading me out. And the moment my feet crossed the plane of that doorway, I lost it. Not being his first rodeo, my escort effortlessly stopped for Kleenex and a moment for me to collect myself before heading back to the pre-op room where Dain sat alone as he did years before on Olive's birthday. His face absolutely assumed that he and Mike had been spot on with their emotional assessment of me, but I assured him that I waited until I left the room to ugly cry with those loud choking sobs down the hallways of that hospital. After a moment to ourselves where we assured each other that she was going to be just fine, we trudged out to the waiting room where you sit and stare at a screen with your child's birthdate and surgery progress status and wait for someone to tell you something.

Olive's G-tube. The inflated balloon held it inside her tummy.

I wouldn't wish it upon anyone. And I felt guilty for being there for a relatively benign surgery when I knew that many of those kids were not as lucky as ours. I heard talk of tonsillectomies and appendix removal, but we also saw prayer circles and tears and parents being led to private rooms to discuss things. A man came around asking if we would like time with a therapy dog, which brought a much needed levity to our awkward silence as the addition of a dog would be about the last thing I would ever want in any situation in my life. The dog lover also demurred on that offer, and after dozens of times of looking at the same screen with lists of birthdays and surgery start times, Olive's plastic surgeon came out to report that her first surgery, the lesion removal, went well and that the general surgeon was working on the tube removal piece. And before we knew it the other surgeon came out, clutching a plastic bag, to tell us that her granulation tissue removal and tube site closure also went as planned. He presented us with her last g-tube that we had placed months before at home, which we had asked for even after the nurse curtly informed us that it wasn't standard procedure, it wouldn't be sterile, and they may not be able to do that. Never hurts to ask, right? We are souvenir people.

There is nothing sweeter than snuggles.

It seemed like an eternity before yet another person came out to announce to us that we could finally see her in the phase two recovery area. We met her in a hallway as she was being pushed in her bed by the nurse on the way to the elevators. I was taken aback by how out of it she was, but the nurse assured us that not only had she put up a fight and refused to wear the mesh hat but that she had asked to see her mom. And juxtaposed against all of the emotion I felt that morning stood the greatest joy of motherhood: the insane power of love.

We walked next to Olive's bed as she was transferred up a few floors to her overnight room, and I jumped at the chance to carry her when we arrived at her room. In fact, for the first time in a long time, she wanted to be held and snuggled so I sat soaking in the snuggles and rocking her as her anesthesia slowly wore off. At some point we switched so that Dain could also snuggle with our child who hardly has time to stop for a quick hug most days as she goes about her busy life and so that I could pump for our other sweet baby who was safely at home with Gigi, blissfully unaware of any of the day's happenings. We hadn't thought she would be quite so out of it, but after a few more hours she was starting to feel better and wanted to be in her own bed.

Popsicle lover.

The most difficult part after surgery is that she was so thirsty and hungry, and she was begging for water. Due to the ridiculous scheduling issues with two surgeons involved, we had switched from the surgeon that we had initially chosen to one of his partners so that the plastic surgery piece could be done at the same time. While I have no doubt that our surgeon was wholly competent, he had much more conservative restrictions post-surgery than what we had been anticipating based on the initial surgery consult. He didn't want her to have anything to drink for 8 hours and nothing solid to eat for close to 24. For us, to have to refuse water to a child that we've spent years encouraging and coaxing and sometimes begging to eat and drink was flat out torture. We are on so many lists of uncooperative parents, but I repeatedly asked the nurse if she could just have a sip of water. Finally she relented and gave her a tiny medicine cup full of water, which did wonders for everyone's morale. This same nurse mind you is the one who told us that if we were fine with it she'd forego a blood pressure reading after Olive went wild as she tried to put the cuff on since it wouldn't give an accurate reading anyway with all her thrashing about. She later casually mentioned that she'd just note that the parents refused the blood pressure. Not entirely accurate, but ok. We own it.

Cruising the halls of Children's Hospital.

Olive perked up as the afternoon went on, and she moved to her bed and discovered "Minions" for the first time on the on-demand movie menu. We watched it at least four times during our short stay. She also became quite fond of pressing the call button to ask for popsicles once she was cleared for liquids, and she was obsessed with her i.v. that had been put in "how I was sleeping" as she repeated. By late afternoon she felt well enough to venture out of her room, i.v. pole in tow, and explore the hallways via each and every car, wagon and push toy in the playroom. Gigi brought little sis Juniper to visit, and at one point we were scolded for letting Olive be so active. Oops. Aunt Katie also stopped by right before bedtime. Olive truly lapped up all of the attention of the day, and her many gifts, including a surprise balloon delivery from afar, really brightened her mood.

Excited to be going home.

I was sad to leave, but after tucking Olive in her hospital bed and Dain on the pull-out parent couch, I headed home to tend to the baby for the night. Dain, who might actually be the world's best dad, reported that they had a relatively uneventful and peaceful night with the nurse being incredibly quiet and respectful, tip toeing in with a flashlight to take Olive's vitals overnight. They ordered one of everything on the breakfast menu when the sun came up and were dining to the giggles of those Minions when I returned. The surgeon and his squad of students had already stopped by early, and Olive had been cleared for a mid-morning discharge pending a successful breakfast. While she didn't eat very much, she didn't have any pain or leakage upon eating so everyone felt confident that she'd be fine at home.

A little dose of happy upon reading
who sponsored our room.

We hadn't seen what her tummy looked like as her abdomen still had a large surgical dressing that we were to leave on for three days, and we were instructed to have her take it easy for two weeks.  Her head incision had stitches that needed to be removed in two weeks, and we were instructed to keep bacitracin and gauze on it, having her wear a hat when we left the house just to keep it clean. We were also instructed to give her tylenol as needed and also given a stronger painkiller prescription just in case, but when we left she was feeling so great that we were pretty smug with our success and were basically high-fiving each other out to the car.

Olive's scar (December 2016)

As life would have it, the high didn't last too long. Getting her to take tylenol at home was quite an ordeal and about two days after the surgery she started to complain of sharp pain in her abdomen. Her mood soured quickly as she winced and screamed in pain doing any sort of up or down movement. She was also devastated that she couldn't bike or trike or ride her scooter as she couldn't wear a helmet while her stitches were in her head. I repeatedly panicked and convinced myself that she had some kind of surgical site infection when she would scream getting off the couch, and Dain repeatedly talked me down. I also called the surgeon, and he tried to dissuade me from thinking anything of her symptoms. It was obvious to me that there was a large, hard mass under her skin near the surgical site, and I definitely googled the terms "surgical site infection" and "hospital acquired infection" way too many times. By six days out, her surgical site on her abdomen seemed to open up a bit and an alarming amount of fluid was leaking out, causing Olive to scream "It's dripping! It's dripping!" at the top of her lungs. I'd had enough of the worry and took her in to the surgeon's office only to be told that while it was a "superficial surgical site infection," it would heal on its own and we should just let it drain and not give it another worry. Easier to say when it's not your child in pain of course.

The more challenging consequence of the surgery is that it hit Olive hard emotionally. A few days afterwards she looked up at me in the car with her big brown eyes and said, "I miss my tube." Heart broken. Of course. Of course you do, and how have we not explicitly validated those feelings yet? I did right then and there obviously as my mind exploded with the realization that this was way more life changing for her than we anticipated. Her tube was part of her identity as it was all she'd ever known. And it was never a bad thing to her. If anything, it was something special that we all paid a lot of attention to. It was a loss for her, and she was grieving that loss. And her grieving process took a very unexpected turn in that she decided she didn't want to leave the house. The first day I tried to drop her off at school it was so soon after her surgery that when she burst into tears and refused to enter the door, I acquiesced and let her come home. The next week, however, it happened again. And again. And again. And for two weeks I dropped off a kicking and screaming child that I had to forcibly carry to the car, out of the car and into school each and every day and endure the torture of having her scream "mommy! don't leave me!" as her teachers pulled her off of me. The first day I cried too as I walked away from a child trying to figure out her identity without her mom by her side. Thankfully her school and her teachers are amazing, and they graciously dealt with having to carry her around for the beginning of the school day until she calmed down.

Olive loving school again.

It got so bad that upon waking up each morning she would start sobbing about not wanting to go to school, and when school starts at 12:30, that makes for an exhausting morning for everyone involved. We knew we had to power through it though, but I honestly wanted to pull her out of school and put her in a morning program somewhere because it was negatively affecting our lives so much. Luckily we did push through it, making her go to school despite her best efforts. She tried different tactics like hiding in her closet, going in nicely one day only to announce "I'm not staying, guys" and making a run for the door, and, my personal favorite, yelling "It's not safe here!" while her mother carried two hysterical children from the car, completely alarming every child and parent in a two block radius. I was desperate and called a child psychiatrist and made a chart for the fridge in an attempt to blatantly bribe her into going to school with the promise of a pogo stick. That kind of worked. One day I explained to her the easy way to do it, with her calmly getting ready for school and walking in there as Olive the brave, and the hard way to do it, with me putting on her shoes and carrying her in kicking and screaming. I assured her either way we would be going to school, and she looked at me and said, "I choose the hard way." And then ran into her closet to hide. Those few weeks were so tough. I questioned daily whether I was doing the right thing or permanently scarring our child as that line can be amazingly blurry apparently. She didn't even want to go to skating lessons, which she loves. Everything was a battle, and it was hard to watch her struggle.

Heading to the theater for a special date with dad.

I should say that while it sounds harsh to force her to go to school, she was surrounded by love. We did acknowledge her feelings and let her voice her grievances, and thankfully there was a turning point. I don't know what changed in her, but something did. Her teacher reported that two other kids were discussing recent injuries of theirs and Olive chimed in by lifting up her shirt and showing everyone her scar. For whatever reason, that seemed to really help her, along with the subsiding physical pain from the surgery. She did also get that pogo stick, but by then the tide had already ebbed.

"I'm busy drinking my coffee." Note: it's hot cocoa.

With everything going on physically and emotionally, eating was difficult for Olive and a struggle for all of us really. She needs a lot of direction and encouragement to eat still. There are days we see glimmers of hope and days where I'm certain that I'll be texting her in college to ask what she had for breakfast and remind her to drink water. It's a process. Initially she lost a pound but has since gained it back now that she's feeling better. And we are now entering the dreaded cold and flu season, which will likely bring a bevy of setbacks for Olive's appetite and attitude and weight. It seems as if it's always two steps forward, one step back, but life does in fact move on. We didn't really get that moment of catharsis that we anticipated. Maybe it'll hit me in the grocery store in a few months, and you'll pass a woman sobbing holding her carrots that her child can finally skillfully eat. Or maybe it'll be when she goes to kindergarten next year and can eat enough snack and lunch on her own to go an entire school day without our watchful presence. Or maybe it'll never happen as our memories of this soften and our lives move on. What I know for sure is that we have a lot to be thankful for in life. And here's to hoping that maybe next year we won't hit our out-of-pocket maximum for once.

To everyone out there who has loved and supported us along this unexpected journey, we thank you. We couldn't have done this without you, and we wish you and yours a very merry holiday season full of cookies, cocktails and contentment.

This is us.

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.