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.