Hooptedoodle – Three Years

(16Editor’s Note: Being a fiction writer, sometimes all that comes out of my fingers when I write is prose that just meanders for a while. Elmore Leonard explained that the term is called “hooptedoodle” and sprung from John Steinbeck’s book Sweet Thursday. It’s a non-sense word that doesn’t mean anything; the author is just going to write a while for fun. This is one of those times. Some of you might like this, others will think I’m wasting your time and for that I apologize. You may skip this post, and I wouldn’t be hurt. This isn’t required reading by any means, but I wanted to get this semi-Magic related story down. – MtGCP)

Here’s a story I’ve never really told anyone in this much detail. It’s quite long and it briefly ties into Magic. It meanders all over the place but it doesn’t have as many asides as you might be used to with my writing. I understand I might not be selling you on this piece at the moment, which is the first thing an author has to do. Ignore this paragraph and focus on the hook:

It was just over three years ago that my wife and I brought our youngest daughter, Katie, home from the hospital. Here’s what you might not know:

Katie was born 15 weeks early.

Early Harvest

Nothing prepares you for that. We were training our 18 month old daughter Lizzy to sleep in her new toddler bed, her old crib was just moved upstairs to the new baby’s room. One night my wife feels something’s a miss, but she’s not in pain (they tell you if you’re in pain go to the hospital, that’s when something might be wrong). She visits the doctor in the morning and I meet her there. The doctor says, “You need to get to a hospital, your water broke. The baby may come early.”

Worried and shocked, we head to the nearest one with a NICU (Neonatal Insensitive Care Unit) that can take an premature baby of her age. After a quick sonogram an doctor confirms the issue. The day my wife entered the hospital she was an estimated 24 weeks of gestation, the bare minimum for there to be a chance of survival for the baby. It wasn’t a quality of life survival, but surviving at all. If the baby was born at that moment, the doctors would’ve given her 20% of living. That’s just better than rolling a 6 sided die and calling it.

Roll a die. Did you get the side you wanted?

There were two likely outcomes: the baby would be born within the next week (what typically happens in this sort of situation), or she would stabilize and it would be full term. Either way, my wife was there until the baby was born. Either a week or four months. But, they reassured us, every day that we were able to get more drugs in the baby and the longer it was before the baby was born, it upped the chance of survival. They started to give the baby steroids and other drugs by proxy of my wife because fetus’ lungs weren’t fully developed by this stage in gestation. Getting the lungs ready to breath was the most important part to develop if the baby was to come early.

We were beyond scared. There have been plenty of times in my life where I felt like I wasn’t in control, but there was something I could at least do. This was the first time I truly felt helpless. We were at the mercy of the doctors and of life itself. I finally understood why some people bury themselves into projects at time of stress or loss: it gets your mind off it and it feels like it gives you some power over a situation where you have none. I rebuilt my computer. I had to. I was at home alone with our eldest daughter while my wife laid at the hospital. When I put her to bed I just tinkered on my computer, numb at the whole situation.

It was a long weekend. My wife was pumped full of drugs which caused her chills and heat flashes running through her body. There were the false labors, contractions which made it feel real, or the real contractions that the doctors stopped a possible birth. They hooked a fetal heart rate monitor up to my wife’s belly which the doctors came in every hour to chart. We were there as long as we could during the day with a 18 month old trying to make small talk. Then it was back home, child in bed while I dug further into my computer thinking of my wife unable to fix this.

She was admitted on the Friday before Thanksgiving, and on Monday they moved her from a birthing suite to a long term suite upstairs. It was a nice sized suite where there was an actual place for me to sleep some nights – a long enough couch that had a softer than average cushion. It looked like the possible threat of a premature birth passed and we might be settling in for a while. I had started thinking about how to celebrate my wife’s birthday in a few weeks, and possibly getting a Christmas tree and what we were going to do for the next few months. Sure, she was still experiencing pain and false labors but they wouldn’t be moving us to this suite if there wasn’t some chance of things not progressing. I never told her what I was starting to plan just in case it would jinx us.

Planar Birth

On Tuesday, the doctor said they couldn’t wait any more, the baby had to come out that day. He said that at this point in time, there was a 50% chance of the baby surviving.

How confident do you feel about a coin flip?

We set up the C-section surgery and headed down there. Now, I don’t get queasy at the sight of blood but if there’s anything dealing with anything with innards of a body I don’t do so well. I can’t watch surgeries in documentaries, news reports or even TV shows like Grey’s Anatomy. Because of this, I was firmly on part of the privacy sheet with my wife’s upper half. I put on green scrubs, a cap and a facemask, were I looked, yep, just like in the movies. About twenty-ish doctors and assistants were doing their part all over the room. In the middle was my wife and I, and to our left on the far side of the room was the heating unit for the baby.

We were both emotional and scared. It was getting warm in there and the doctor’s instructional play by play of what his actions (“Making the insert”, “let’s pull the muscle back”), wasn’t helping my nervousness. I felt a bit queasy and breathed through my mouth in the face mask at this point. Then my wife, who was shot with localized anesthesia, said that it felt weird with the doctor’s hands inside her: like it felt like Jello. I started feeling woozy and nauseous so I searched for a garbage bin, anything to throw up in. One of the nurses took me out of the room and had me lie down to catch my breath. After a second my thoughts caught up with me about the situation: My wife was in there alone going through something extremely stressful and scary alone, I almost threw up when the doctors warned me that might happen, I felt like I was in a bad comedy movie with my inability to keep it together, and I needed to get back in there. Looking back on it now, I can laugh at the situation; I almost did it there.

After another point of me almost losing it again, I was there for the birth of my daughter. They rushed her to the heating unit and about five doctors surrounded her working on getting her hooked up to every machine possible. I stood behind them and took photos of whatever I could; this might be the only time she might be alive. After a minute or so there was a weak squeak from Katie; her vocal chords were not fully developed which made her sound like a kitten. I think it was the happiest sound my wife has ever heard. Katie was born at one pound, five ounces and could fit in the palm of your hand.

The doctors said she was doing good at the moment and rushed her upstairs to the NICU as I accompanied them. Soon after surgery my wife joined us in the room and saw her baby for the first time. I will never forget that moment.

IMG_2278
Hours after birth – November 2013

Aside: one of the most interesting facts I learned about the history of premature babies is that where the practice was honed and researched. You’d think at some of the biggest and brightest hospitals in the wealthiest areas of the world. Nope. The NICU was born from Coney Island as a sideshow. Instead of charging the mothers for the care they would need, he would charge admission for visitors to take a look at the smaller than average babies along with the technology used to keep them alive: incubators. I understand why people were curious, seeing a baby that small kept alive certainly is a miracle.

Steady Progress

Katie received 24 hour care as everything was monitored and recorded for data. Even her poopy diapers were weighed, but like everything it was measured in grams. One gram equals one paperclip. A day after Thanksgiving, my wife was discharged from the hospital and we left without our baby. We called the hospital for Katie’s nightly weigh-in to find out how many paperclips she had gained. There was nothing we could do but be there for our daughter and wait.

After we left she would be covered under a clear plastic blanket for a few days to help keep the humidity high so her skin didn’t stick together. The she bathed under blue lights for when her bilirubin count was too low. When her lungs weren’t providing enough oxygen we intubated her. She feasted on single digit milliliters of breast milk through a nasogastric (NG) tube; an NG tube is inserted into the nose, down the throat and into the stomach. When inserting the NG tube there’s a chance of the tube bending in the esophagus and head into one of the lungs where it would fill with the milk intended for the stomach. Katie didn’t have the knowledge or ability to eat and swallow so everything had to be fed through the NG tube.

A few weeks later on my wife’s birthday, she was able to hold Katie for the first time. I don’t think I’ll ever be able to top that birthday present. Katie would lose so much heat when she was out from the incubator that you had to hold her against your skin to keep her warm. All of these cords and tubes came from such a little body that you were handed her. You’d sit in a chair with Katie pressed against your chest close your eyes and enjoy the moment.

We visited every evening, and a majority of the day on weekends; obviously everything shifted around Katie now and it was the new normal. Each time you entered the NICU area you had to scrub your hands and forearms just like you were preparing for surgery. You couldn’t visit if you were sick, even a runny nose, as these where infants and newborns with compromised immune systems. “Luckily” because of Katie’s circumstance she was given her own room where we could pass the time with her, but could have one or two visitors at a time. Over our stay we saw parents and babies come and go, some only staying for a few days others a few weeks. Katie was by far the earliest and the lightest baby in the NICU at her birth.

Most days we visited we were just there, Lizzy on the floor coloring or playing on an iPad while Jessica and I sat quietly, relishing the aspect that our family could be together in the same room. We just watched her, hearing the beeps from the machines as she would “defrib” (her heart rate dropped) or her blood oxygen level got too low or too high for too long (We learned that for premature babies, you can’t let them have 100% oxygen level in their blood because it would cause create and swell too many blood vessels in the eyes and would reduce her vision or cause her to go blind). The alarms that you recognize in movies where the doctors would rush in and try and save the dying patient would only get glances at us after a while and we would only start to notice when the alarms lasted longer than it should. It was then that the nurses were called in the check Katie out and it worried me every time.

You couldn’t look at each day and compare it to the last it would drive you crazy. If she lost weight one night, it wasn’t a sign that everything was going to hell. A day with 10 defribs didn’t matter if the next day was seven then the next 15. You had to take it one day at a time and look at the bigger picture. Most babies lose about 10% of their weight after birth, but when you only weight just over a pound, you need to keep every paperclip of weight on you.

As you can tell, it drained us emotionally.

mtg-elspeth-shirt-large-pax-prime_1_c73aad2c082522986762ffb1260ea1b4Hope Charm

I noticed around Christmas time I had subconsciously been wearing my Elspeth t-shirt I bought at PAX Prime that year more often than my other t-shirts. This was the Elspeth drawn by Penny Arcade’s Mike Krahulik.

This was Theros, Elspeth. Sun’s Champion, Elspeth. She was a soldier who experienced a traumatic event as a child and was now stronger because of it. Her ability on her card reads: -3: Destroy all creatures with power 4 or greater. I guess in my mind it worked having a child that was born smaller than other babies and it could tie them together; you smaller creatures needn’t worry, Elspeth is here for you. Elspeth fought for those that couldn’t fight for themselves.

I wore the shirt to the hospital about once a week. Elspeth was my good luck charm, my Avatar for my daughter. If Elsepth can pull through it, Katie can too. I always felt a little better when I wore it, maybe just hoping that I could share a little bit of that Planewalker magic (Of course if I knew what the storyline was going to hold, I might not have been so gung ho about it. Thanks WotC).

This is the first time I’m telling anyone this, my wife doesn’t even know. I know it’s kinda silly, but in times like that you need to things to give you hope. Some days, you just need that little extra help. I guess if I could pull something from my world and share it with her, it would help us both.

About a month after she was born, it was Christmas. Her weight started to stabilize. It wasn’t everything, but it was something (And no, I don’t think it was the shirt, maybe). She still had a long way to go, as we didn’t know about her brain functions, her vision, her Cryptogenic organizing pneumonia (COP) that was starting to develop and was needing X-rays. I stayed away from the internet research about this and the parent blogs since I knew I would either go down worrying about everything or become too optimistic and if something did turn for the worse I would be crushed.

There were victories every so often like giving Katie her first bath, unincubating her for the last time to give her passive oxygen (the kind with the tube under your nose), the shift of removing the incubation unit to a crib-like setup. It wasn’t easy sailing as we kept monitoring the blood vessels in her eye as she may have needed laser surgery and she never really got the concept of feeding by mouth. We were still in the hospital when the day of her expected due date came: the middle of March. She’s on her own time schedule and we’ve dubbed that “Katie time”. Finally, when her heart continued to beat just fine and her blood oxygen levels were stable that she could breathe on her own, there was no reason for the hospital to keep her.

Incremental Growth

Katie spent 130 days in NICU, almost never leaving her room, we brought her home.

We brought her home weighing nine pounds, six ounces as we no longer needed to classify her weight by milligrams. Katie still had a NG tube coming from her nose as this was the only way we could get anything into her stomach. She would reflux and spit up the food we just gave her. She wasn’t taking to the bottle; there were still some digestion issues. She had a compromised immune system so we barely could take her anywhere or invite anyone over. Most of the places she went of the house were to doctor’s offices.

However, not everything was bad news. Her eyesight cleared up. A heart valve that may not have closed correctly, did. Everything that could’ve gone wrong didn’t. There’s a great organization around Seattle called the Kindering Center where they focus on under 3 kids with special needs. They helped us with physical and feeding therapy (As well as Swedish hospital). There were weekly visits to help Katie catch up with her age group. Some months it felt like there was no progress.

Katie wouldn’t eat. We had to feed her formula through the tube in her nose. If the tube was pulled out to be changed or she just yanked it out by herself (which happened to her laughter), we had to place it back it. We had to lube up the tube and slide it up her nose and down her throat to her stomach. She cried every time because you would too. It just became no big deal to my wife or I. We would feed her at night with a pump, sometimes multiple times a night to try and stimulate her hunger sensations. There were countless nights where there was little sleep testing different feeding patterns. We tried everything to get her to start to consume and keep down food.

There are plenty of parents that say their kid isn’t eating. Babies and toddlers do not need much food to grow, you’re not expecting them to eat that large deep-dish pizza in one sitting. With Katie it was different, she just didn’t experience hunger or if she didn’t she didn’t associate it with eating to put food in your stomach. It’s really a strange phenomenon when you think about it: my stomach is hurting so I’m going to shove food in this hole on the upper side of my body to make the pain (hunger) stop. If her stomach was hurting it was never long under it was full (due to the tube feeds) and the pain would go away. You can’t just starve her because (I believe) she never made the connection of what eating does and explaining it to a 4 month old doesn’t work.

At the end of Summer, because she was still being fed by NG tube, our gastroenterologist (stomach doctor specialist) suggested getting a G tube directly into her stomach. Basically it’s a tube that goes into a ball that’s in your stomach to help with the feeding. You hook a pump to the tube and pump the formula directly into the stomach. The tube sticks out like one foot in length and it’s described as “just like a piercing”. It shouldn’t come out, but it could if it gets caught in anything or the baby yanks on it hard enough. Luckily, that didn’t happen. This is part 1 of a long term plan if Katie wasn’t going to fully eat right away.

We agreed to it after some hesitation. The problem was that her surgery was on the same weekend as PAX prime. I had never missed a Magic Party since WotC had started throwing them. Of course, family came first. Part of me had felt bad that I felt like I had let down the Magic community since my “Job” during it was to tweet out the preview cards so everyone could see them. Sure, it was also the year that WotC decided to announce that Fetchlands were to be reprinted in Khans and I didn’t know that. It still wouldn’t have changed my decision if I had known before hand.

My Magic playing (and content creation) had fallen off a great deal. There was a drop when my first daughter was born, but now it was almost non-existent. I was keeping track of what was going on through the online community and Twitter. I had become a content consumer instead of a creator which just made me feel worse about not bringing something back to the community. I knew people understood, and I very much appreciated their well wishes and encouragement but like with PAX, I felt like I was not pulling my weight. I dove head first into Twitter, which has been my saving grace with the community. I think people now know me more as a Twitter user than a blogger. Anyway, back on topic.

Time Spiral

Over the next year Katie grew. We were told she was going to be delayed in some growth milestones but only by a couple months. Again, we called this “Katie time” as even though it sometimes took her longer she eventually got it. She bit down on a toy and yanked out her second ever tooth; I’ve been calling her “toothless” ever since. Now she has all of her teeth except a front lower tooth; the adult one will come in just fine, though a little delayed. There have been ups and downs and frustrations and plateaus, but we always knew that in the end it would all be worth it.

A year after she had her G tube installed, we swapped it out for her button peg (where the tube doesn’t come all the way out now, it looks like a button). There’s been some growth in the reflux issue where it’s not always a multiple everyday event. For months we tried different ways to make her not throw up: feeding her slowly, don’t move her after feeding, feed her smaller portions but more often. I think Katie has had her clothes washed more often than any person I know. The good news is that she always smiled and laughed after she threw up meaning it wasn’t hurting her.

After her second winter after flu season we could take her to more public areas. Suddenly we could take her to playgrounds and out to see people (I’m sure she was tired of a select number of faces she’s ever seen). That’s when she took her vomiting act on the road. We discovered new triggers for her reflux like if she got too excited she threw up. If she cried too much, she threw up. If she ran around and got out of breath, she threw up. The goal was to try and make the spill area as small as possible instead of trying to prevent it. We have walked through a few open houses where we were able to save the new carpet by rushing her to the bathroom to to have her throw throw up there. Tile is easier to clean than carpet.

In between of all of this she blossomed. It took a while but soon Katie crawled and walked and ran and ran and ran. She didn’t stop running unless you held her tightly or strapped her down in her car seat. Constantly running into objects or falling down, either Katie feels no pain or just doesn’t cry when she gets hurt. Just gets up and continues on her way.

One her third birthday, last year, she graduated from the Kindering program and began a program at the local elementary school for younger special needs kids. There, she’s had her first real taste of being inside of a classroom (our eldest daughter started preschool last year as well). She’s still not eating but we’re progressing. Now it’s just the want to eat and how much versus how much she needs nutrient wise.

She’s a normal three year old, as normal as a three year old can be. Katie runs (much more controlled), laughs, plays with her sister, fights over the iPad with her sister, and can express her wants and needs. When I come home from work she runs up to me, grabs my hand, and drags me to show me something she made or wants. Tonight as I was tucking her in and hooking her up to her pump for her nightly feed, she asked me if I could sing “MacDonald song.” She smiled at me with her wide smile and missing tooth while grabbing her stuffed animal friends she had dragged into bed. I sung her a few versus while she picked out “sheep” and “cow”, then I kissed her forehead and turned off the lights while the familiar hum from the food pump filled the room.

Little Girl

Three years is a long time. Katie wouldn’t have been Katie without our huge support team that we have in place. I know we’re not the only ones that have kids with needs and we’ve felt very lucky and blessed to have Katie turn out as great as she has. It hasn’t been easy and some times you’re stressed out and just want the day to end. There were days upon weeks of nothing but worry and long nights. That’s when you grab your daughter and hold her tight and show her your love. You love them so much and would do anything for them just so they can succeed. I always wanted to be a dad, and even throughout this whole ordeal I am still happy and proud of my daughters.

Some days, when I need that little extra strength, I still put on that Elspeth shirt like I have been for the past three plus years. I don’t know if that’s for me, or for her. I guess if you want me to tie it back to Magic, let me say that the game always been there for me to use as an escape or to draw my attention and focus on. Sure things change and we visit different planes and we get new mechanics, but I can always count on the three set block and the core set release dates…

…Wait, what have I missed these past three years?…

With kids, just like with Magic, there’s a new normal every three months. Once you adapt to the change something new comes along and screws it all up. Magic has fully been a part of my life for 15 years now (before that it was just a light hobby). Even if the past few years has pulled me away from content creation more than I would’ve liked, I haven’t pulled away from the game. Sitting in the hospital with the heart monitor beeping reading everyone’s reactions on spoiled cards. Late night insomnia attempts at organization and creation of EDH decks while Katie’s pump is running in the next room. Magic and its community was something I could connect with the outside world when mine suddenly focused inward. This is just one of the many reasons I’ll be thankful for Magic.

I want to show both of my daughters my favorite game when they grow older. We’re not there yet. My eldest daughter has a Chandra Funko doll floating around in her room; Katie loves to go through the cards on my desk and makes sure they look good on the ground. I’ve bought each of the girls a foil Little Girl for them to keep when they’re older. Even though Elspeth is a great symbol of strength and hope, however the one half power and toughness of the Little Girl seems to work pretty well with the girl who was born at just over a pound and could fit into my hand.

Katie at Disneyland
At Disneyland – January 2017

Afterward: Thank you all for your well wishes and encouragement. If you made it this far, or at least scrolled down here, I thank you for your time. I am working on adjusting my time to actually create content again. You can always contact my by twitter (@mtgcolorpie) or email (mtgcolorpie @ gmail). Don’t be shy of saying hi, asking about Magic, or asking about Katie.

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