LUCKY NUMBER 7

School Christmas Program

You blink and suddenly you have a seven-year-old. About seven and a half years ago, Dain and I were on Mount Rainier beginning a climbing adventure after months of planning and training. I was newly pregnant, having found out that surprise a few weeks earlier. I was young and fit, and our outfitter was confident that I could still safely complete the climb. With little data on the safety of pregnancy over 10,000 feet, I wasn't sure if I'd make a summit attempt, but I was ready to go as far as I could. On the morning of our climb, I had a pit in my stomach, but I quieted the voice of self-doubt in my head reassuring myself that it was just nerves. A few hours into our hike to high basecamp, however, I knew it was more than that. I didn't feel well. Something was wrong, and that voice in my head was now screaming that I had to be the one to call it. I broke the news to Dain and sobbed as we trudged back down to the parking lot. At the time I felt like a quitter. I didn't yet understand that motherhood is a succession of difficult decisions that most often are not about you, but looking back, quitting was one of the bravest things I've ever done.

Mount Rainier (August 2011)

Instead of standing on the top of a mountain, we ended up in a loud, bustling emergency room in Seattle. I had heavy bleeding and was told that we had a 50/50 chance of having a viable pregnancy. I left with antibiotics for a urinary tract infection and a lot of uncertainty, clutching a strip of ultrasound photos of our little blob with a beating heart. Of course that little blob turned into our vibrant, adventurous Olive, and there's not a day that goes by that I'm not grateful for her. Our lives are certainly different from that young couple that dreamed of standing atop the world's summits, and while I'll never say that it has been easy, Olive is an awesome little soul that lights up our lives. We are the lucky ones that get to be her parents.

Olive's prematurity and medical complications, especially her feeding tube, used to be our daily existence, but they are now so far in our past that it seems like a different lifetime ago that we had a kid who was so fragile. We occasionally talk about it, but it's not something I even think about daily any more. You would truly never know where Olive started if you met her now without knowing her background. Six years old was a wonderful age. She is fascinated by natural disasters, inquisitive about all things unknown and obsessed with squishy toys. She will giggle to no end when she writes the word "butt" on anything and everything. This is definitely the sweet spot of childhood. Olive is easy and delightful and still thinks her parents are the coolest people in the world.

It has been almost three years since we undertook our tube wean, and I am happy to report that Olive is an amazing eater. She would prefer to subsist on chocolate and cheese, but she happily eats almost anything we are serving. She eats most of her lunch at school and is getting close to being brave enough to try hot lunch. Over the past year she has finally figured out her own hunger cues, and we no longer have to monitor her intake at all, which is the greatest blessing. She's still small (weighing in at less than the first percentile) and may be in a booster seat when we roll up to junior high, but she's perfectly proportional and following her own little curve. She is healthy and happy, and apart from her NICU follow-up research study, we no longer need to schedule appointments with any sort of specialist or therapist.

First Grade Photo

She "graduated" from kindergarten last June, and her award at the end of the year was the "CEO of Kindness." That first year of school was pretty darn magical. Her teacher was amazing, and Olive was surrounded by so much love that we never worried about her. And now she is in the middle of FIRST GRADE. It has been considerably less full of unicorn sprinkles and rainbows than kindergarten, but Olive has adapted to it well. The only things she dislikes are computer class and having to wake up early and leave her warm, snuggly bed. Otherwise she happily heads to school each morning.

While she doesn't seem to notice, academics continue to be a struggle for her. We've resigned ourselves to the fact that they always will be, and we're prepared for the long haul ahead of us with extra patience, lots of work at home and summer tutoring. She's a fantastic speller, but reading and math are tough. Her attention span is short at school, but she's the most creative little person. She can spend hours creating superhero suits and art installations in her room. She has needed some accommodations, especially for testing, and she'll probably face an ADD/ADHD evaluation at some point. She's statistically more likely to have every sort of learning disability based on her early start in life, but as with all of the challenges of life, we'll take it as it comes.

Apart from the academic rigor of first grade, Olive is thriving. She's a Minnesotan through and through. She plays hockey and LOVES it, and she gleefully puts on all of her snow gear and bounds out into the snow. I'm still amazed she can skate with all that gear on her little body, but she makes it work. She is also playing basketball and rocking her first year as a girl scout. She's doing remarkably well to the point that it sometimes make me feel guilty. Why did Olive beat the odds?

Today is her seventh birthday, and it brings up a lot of big emotions. It's thirty degrees below zero in Minnesota today, and school is closed. She wasn't supposed to be born during the middle of the winter. I was due in April. I didn't get to meet her on the day she was born. I was in intensive care myself, and it took a few hours for the nurses to wheel me over to see her in my hospital bed, pushing the clock to January 31. Dain, and my mom and my best friend (who happened to be in the hallway at the right time) all got to see her before I did. As I tell Olive often, life isn't fair. But that doesn't mean it isn't incredible. We are the incredibly lucky ones that have this girl in our lives. Happiest of birthdays to our sweet, sweet seven-year-old.

KINDERGARTEN

Three years ago I started this blog to document our rather nontraditional feeding journey with our former micro-preemie, Olive. Back then I told you that our goal was for Olive to be tube-free by kindergarten. And two years ago I revised that goal when I truly didn't think it was possible. Our goal changed to having Olive eating enough to not need a tube feeding while at kindergarten. Then in March of 2016, we finally had the courage to undertake a tube wean on our own. We honestly thought it would take multiple attempts, but somehow we dug our heels in and stayed on our feet holding up that pint-sized, headstrong toddler and her colicky sister. And it worked. We've now been tube-free for just over a year, and that feisty kid who we once dreamt would go to kindergarten without her tube has done just that.

At the end of August, Olive started kindergarten! And a whole new chapter of this parenting gig began. We prepared for it as best we could by talking about it and reading books about kindergarten and exposing her to all sorts of drop-off "big girl" activities over the summer to get her in the mindset of being a kindergartner.  She did YMCA day camp where she rode the bus, had playdates, went to engineering camp and art camp and dropped in for a few days of summer care at her new school where she would go on exciting field trips. Did this mean we had a smooth transition to kindergarten? Of course not! That would have been way too easy.

She was a hot mess come the morning of her first day of kindergarten. She started crying as soon as she woke up, and we had to force her to get dressed and take maybe three bites of breakfast. She came around for a few pictures in front of our house before crying again in the car on the drive over. The only thing running through my mind that morning was "please don't throw up. please don't throw up. please don't throw up." I had a spare uniform packed just in case, and I think I was holding my breath that entire day, just waiting for the call from school that our child had thrown up. But somehow she held it together and didn't make that classic move from her anxiety playbook.

Education is such a personal decision that parents make for their children, and we spent a lot of time last winter deliberating about where to send Olive. We are incredibly fortunate to have a variety of great schools nearby and the resources to have a choice, and we ending up choosing a small, Catholic school in a neighboring city because it felt right for our family. Olive's kindergarten class has 16 kids in it, and her teacher is this magical unicorn with the patience and temperament of a saint. We're confident that it's exactly what Olive needs. Because, like nearly everything thus far in her short life, school is not going to be easy for her.

Olive weighed 710 grams (1 pound, 9 ounces) when she was born, which puts her in this category of babies that people whisper about. It is not where anyone wants to be born. It's considered "extremely low birth weight" and while there are ongoing studies about the outcomes of these tiny babies, the consensus is that these kids, our kid, are more likely to have any number of learning disabilities, behavioral problems, and developmental delays as a result of their low birth weight and accompanying medical problems. For babies born at term, about 12% of them will have learning disabilities and behavior problems. For babies born at Olive's birth weight, anywhere from 50-66% of them will have learning disabilities and behavior problems. That's a big, intimidating number, which is not to say Olive WILL have any of these issues of course, but it is certainly something that has been on our radar as Olive starts school and is expected to do more than just play well with others.

It only took a few weeks into kindergarten for her to be placed into remedial writing and reading class. I knew it was coming, but it still stung to get that notice in her folder. Kindergarten is most definitely the new first grade, and it is drastically different from 1988 when we played for a few hours every morning and had a successful day if we didn't bite anyone or eat too much glue. The expectations are high, and Olive is already struggling academically, especially with writing. Fine motor skills have always been challenging for her, and neatly writing a "2" or an "S" is proving to be a Herculean task. It's difficult as a parent to see your child struggle, and working on homework can be a frustrating, family affair. Yes, kindergartners have homework.

We are three months in, and it is obvious that the next twelve years of school are going to be tough for Olive. When we received her first report card, it was difficult to absorb without becoming instinctively defensive of our kid who happens to be phenomenal, just not at kindergarten Spanish or writing or computer class or most everything that was graded. It's pretty intense for a five-year-old, and it's caused me to second guess whether we should have put her in a formal pre-K program last year. But as Dain reminds me, she was where she needed to be the past two years. It's also quite possible that any difficulties in school are not a direct result of her prematurity and more a result of her genetics. School was easy for me, but it was really hard for Dain. 

Olive is a kid who does her own thing. She doesn't particularly care what everyone else is doing, which I think will serve her well in the long run, but in the short term, it's frustrating as a parent and I'm sure as an educator. Thankfully our conference with her teacher made us feel better as she had a lot of wonderful things to say about Olive. We will take it all as it comes, and of course help Olive succeed as best we can. We've been given an almost overwhelming number of things to work on at home from rhyming to sight words to practicing fine motor skills to working on following multi-step directions to trying to integrate Spanish vocabulary into our day. And the girl cannot tie shoes or do her shirt buttons yet. Those dang fine motor skills. 

While it has been a big adjustment for our family, Olive truly loves kindergarten. She may not be particularly on task during the day, but she sure is having fun. Her favorite things are recess and the move and groove time that they have during the day, and she's already set up a bed for the class stuffed bear despite the fact that he will not be visiting our house until February. Her teacher makes sure they get a lot of movement in throughout the day with three recesses and frequent brain breaks, which is fabulous for Olive because she is a mover and a shaker. They go on quite a few field trips and do a lot of special activities during the day to keep those little minds busy. We're trying hard to teach her the importance of kindness and thinking of others so we were thrilled to hear that she gets along with everyone and is (mostly) kind. She has definitely gotten into some mischief during her days, but she has really settled in nicely to the routine of school.

If you ask her, she will also tell you that one of her favorite parts of her school day is lunch, which is funny because up until a few weeks ago, she would come home with the entirety of her lunch still in her lunchbox. Eating is a struggle. It most likely always will be. She looked at me a few weeks ago at the dinner table and said, "Mom! I'm a kid. I'm not supposed to eat. I'm just supposed to play." And that's truly how she feels about it. She could go either way on eating, which can be maddening as a parent. We do our best to encourage her and put the hard sell on why we have to eat. To grow. To be strong. To be healthy. She knows this is true, but she just doesn't have an innate desire to eat. Mornings are especially tough as she has zero appetite until about 11 a.m. and has to leave for school around 7:35 a.m. We often times feed her bites of breakfast as she watches Ready Jet Go!, which is both beyond ridiculous and completely necessary for her well-being as we can't send her to school without any fuel in that little body.

The past two weeks, however, she has mysteriously eaten almost everything in her lunch, which mostly led us to believe that she discovered the trash can in the lunchroom. But then she informed us that she now races one of her classmates at lunch time so she can beat him at the "lunch race." You go, girl, if that's true, but it's hard to say what the truth is without being able to spy on her in the lunchroom. And oh how we wish we could get a glimpse of her day at school without her knowing we were there. Unfortunately her school hasn't yet responded to our request to outfit her with a GoPro.

All kidding aside, we don't take for granted the fact that we have our two healthy daughters. Six years ago, shortly before Christmas, my doctor called me to tell us that we had a positive Down syndrome screening for our in utero baby. She had already scheduled a detailed ultrasound and an appointment with a genetic counselor for us first thing the next morning. It was the kind of news that knocks the wind out of you. I sobbed as I frantically tried to reach Dain and my mother. That next day, for many reasons, we decided not to pursue an amniocentesis, which would have definitively diagnosed a chromosomal abnormality in our baby. Instead, we decided that we were okay with the unknown, and we were okay with a kid that might be different. 

Of course, as it turned out, we ended up having a beautiful baby girl just a few weeks later. She did have quite a few medical problems, but Down syndrome wasn't one of them. She was whisked away the moment the doctor pulled her out. We didn't see her. We didn't hear her cry. She couldn't breathe. She was resuscitated and intubated in a nearby room, being handled by doctors and nurses whose names and faces I don't know, before Dain and I even knew that she was a girl. On that day, we were so far away from today. We were praying for our child just to live. Her life wasn't a given. We could have never imagined in those early days that our tiny, helpless daughter with tubes and wires covering every inch of her body would one day be the thriving, ball-of-energy that is Olive. You've come a long way, kindergarten girl, and your future is bright. 

FIVE

First Ride Home: May 3, 2012

Five years ago today, we brought Olive home. I think most first time parents probably feel a mix of nervousness, anxiety and excitement in varying proportions when they bring their first baby home, but I was terrified. Olive's due date came and went in April, and we had no indication that we would be leaving the safety of the hospital until a few days before it happened. We knew she'd be coming home on oxygen and that she certainly wasn't eating well, but she also had anemia, hearing loss, eye disease, lung disease, and a fragile immune system to the point that a common cold could send her back to the hospital or worse. But we were told babies sometimes surprise everyone and thrive once they're home. No pressure, right?

After 94 seemingly endless days in the hospital, the last few were a flurry of activity. My mom supervised everything at our house while we were basically living at the hospital and/or Ronald McDonald House, and she had already arranged for our house and carpet to be deep cleaned, our windows to be washed, a freezer to be delivered and our nursery furniture to be delivered and set up. At the hospital, Dain and I were busy learning how to care for our daughter. The nurses taught us how to fortify breastmilk and administer iron supplements. A car seat educator taught us how to properly position our itty bitty baby in her car seat using rolled up blankets for extra support and then gave Olive a "car seat test" to make sure that she could maintain a healthy oxygen saturation level for at least an hour in that position. Someone else gave us a first aid class and tested our competency in administering infant CPR. She told us to tape the CPR step-by-step visual guide to the wall in our nursery and kitchen if not in every room in our house. Every doctor and nurse towards the end seemed to give us advice. It was so much information and what still sticks out the most in my mind is the research coordinator who told me that we'd be stupid to ever take Olive anywhere like the grocery store or Target because GERMS. They're absolutely everywhere in case you didn't know that.

Hospital car seat test.

We hired a medical supply company and had a truck load of supplies delivered to the hospital and our house. We learned how to use the apnea monitor and the oxygen tanks and cannulas and lines. We had a landline phone set up at our house to ensure the fastest 911 response possible and to use to download the data from the apnea monitor to send it back to Children's Hospital. I spent hours on the phone. I signed up for a life support designation through our electric company so that we would have priority for power restoration in the event of an outage as Olive's equipment would require power. I called the fire department to inform them of the oxygen tanks in our home and ask about whether or not they carry infant oxygen masks (they do.) I called our police department to ask about emergency response times to our house (under 3 minutes.) I applied for a temporary handicapped parking placard. I found a pediatrician and scheduled appointments with him, the pulmonologist, the home health care nurse, the audiologist, and the eye doctor. We placed signs on our doors stating oxygen was in use and rid our house of anything flammable. We even did a few normal things like buy diapers and wipes. I read the PREEMIES book cover to cover despite a very specific warning in the beginning that you should most definitely not read it all, only the sections that apply to you. But how would you know if it applies to you if you don't read it?

It all felt like we were studying for a colossal test. I've taken a few high-pressure exams in my life, but never before had someone's life hinged on my mastery of a subject. Let alone my own child's. If I had stopped to think about the mountain of what-ifs, I would have never been able to keep going. Instead we put our heads down and did what we had to do. And then, on the morning of May 3, 2012, the rounding neonatologist casually wrote Olive's discharge order and wished us luck. We signed some forms and were told we could leave whenever we wanted to. Obviously we stalled as long as we could. But after we gave her a bottle, let her nap, had lunch, gave her another bottle, pumped a few times, asked our nurse fifty more questions, filled up bag after bag of supplies and packed up our existence from the past three months, we finally strapped her into her car seat, said our goodbyes and walked out the door with OUR baby.

HOME (May 3, 2012)

We had walked out those doors so many times without her that it felt like we were stealing her as we walked across the skyway and into the parking ramp, discussing whether we did it right as we clicked her into our car for the first time. Naturally I sat next to her in the backseat as Dain drove slowly and cautiously on the road home, our family of three alone for the first time. For the next fifteen months Olive would not have a single car ride without screaming the entire time, but on that first ride home, she fell sound asleep and didn't even stir when we carried her inside. We set her in the living room and changed her oxygen from the travel tank to the large tank in our living room for the first time, both of us double checking that we did it right. She slept in her car seat as we tiptoed around her, unpacking our bags and organizing all of the many supplies we suddenly needed.

We were as ready as we were ever going to be, and right as I sat down and took a deep breathe, she woke up screaming and it began. The next two years were tough, with Dain and I being in survival mode for most of it. Looking back, it's a blur of doctor visits, surgeries, feeding difficulties, therapists, vomit, sleepless nights, and worry. But our family persisted, even when we weren't thriving. And now I sit here asking myself how it's been five years already since that day we snuck out of the hospital with our baby.

We have a happy and thriving five-year-old who is starting kindergarten in August. How is that even possible? This kid astounds me. She is curious and strong and adventurous. She is cuddly and affectionate and sweet. Her energy knows no bounds, and she can be relentless when she fixates on something. She loves school and playing with her sister, and her ideal Friday night includes pizza and a viewing of Moana with her prominent spot snuggling in between her parents. She didn't speak until she was two and a half, and now she will talk your ear off from the moment she wakes up until the fifth time she comes out of her room after you say goodnight. She is still tiny, weighing in right around 30 pounds, but she is healthy, having weathered each and every illness that preschool has brought. And my goodness, she is loved.

Today will be like any other Wednesday for Olive. She'll enthusiastically bound out of her bed excited to start her day. Her sister and I will walk her to school where she'll tightly hold my hand as we walk to her classroom to hang up her backpack before heading upstairs where she'll ask us to watch her "crazy tricks" on the climber before giving me a hug, a kiss, a high five and a bump. She'll chirp "I love you, mom! Bye mom! Bye June!" as we walk away and may even throw an "air five" and an "air bump" motioning to us from afar. The wonderful thing about being five is that every day has strong potential to be the best day ever. Today will be no different.

For me, I will hug Olive extra tight today and remind myself to be grateful for our beautiful girls and this unexpected journey. We'll make a donation to the neonatal program at Children's Hospital, and we'll have Olive shop for toys for children in the hospital so that we can pay forward some of the kindness that was bestowed on us. Other than the occasional comment about her tummy scar, Olive has no concept that her start in life was difficult and different. It does not define her. I wish I could say the same, but I don't think I'll ever be completely over it. It's been such a huge part of our lives these past five years, and it's emotional. And we're the lucky ones. We brought our baby home. Not everyone gets that privilege.

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.