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.