Happy Thanksgiving!

Happy Thanksgiving! I hope you get to enjoy it with the people you love the most! I am working on the NICU: Coming Home post, or at least, I'm trying to, Travis has been a little nap resistant lately, and with all the stuff we've had going on, its been hard to get it typed out!

Time to get back to packing! Happy Thanksgiving!

Five Things You Probably Didn't Know About Me

1. Biggest pet peeve regarding talking about my disability? People hitting me in the leg and asking "did you feel that?" Yeah. It happens. Yes. I felt it.

2.  I went to show choir camp in 1994. Complete with jazz hands. I think I was the first person in a wheelchair to ever attend, but don't quote me on that. Our choreographer, Kye Brackett was awesome. I think he had to change almost ALL of the choreography to better include me and feature more arm movements, and I loved every minute of it. I'd go back now if they'd let me!

3.  When I was around 11 years old, I got a letter back from one of those magazine art school ads. They said if I'd been 18, I would have been accepted. They should probably know that I traced the picture of the turtle. 

 4. Matt and I met online, in an AOL chat room called "Disaffected" (ha!), in 1997. We didn't meet in person until 1999, in Disneyland. The first thing I thought when I saw him? "He's shorter than I thought he would be."

5. I am allergic to rum. This is very sad, many delicious sounding drinks are made with rum. It is entirely too painful of a reaction to just suffer through it.

Aren't you so glad to know these things?

Poetry. I write it.

I thought I might share a poem or two that I've written once in a while. Some of them are fairly obvious in subject. Others require an explanation you will not find here. Sorry. Some are newish. Some are old. Ancient even. I wrote a lot more in my late teens. Probably because the internet was so boring then.  

So here you go. Please enjoy and do not judge. Or copy ;)

Fun fact: You'll notice that I wrote these two exactly 14 years apart.

Untitled  8.16.98 
I wondered what it was
about you that made me nervous
but I let you kiss me
anyway.
I just closed my eyes
and let it all happen.
Now, you glance at me,
only when you think
she can’t see you. 

"New Shoes"  8.16.12
The way you held my hand
was not tender or even kind.
But full of malice
and you would not
let me go.

I poured my heart out
to you, but it spilled
and sloshed
and splashed
and made a mess of things.

You were upset;
it had soiled your new shoes.
shiny and black.
The ones you bought
just to walk all over me.
 

Doses of Reality

You know that feeling you have when you're a little kid, when your parents are the center of the universe and you know they're always going to be there for you? It sucks when you realize that that feeling is about the farthest thing from reality. Obviously, in my early 30's, I know that nobody lives forever and that at some point in our lives, we all lose our parents. Thankfully, that hasn't happened yet, but in the last three weeks, and in the last two hours, reality has pretty much clocked me on the head.

At the beginning of November, my "healthy as a horse" (yet longtime smoker. Figure that out.) father was admitted to the hospital. Thought he had a touch of the flu, felt rotten. Turns out his appendix had ruptured and his abdomen was filled with toxins. He spent a little more than a week in the ICU. He's still in the hospital recovering, and is doing much better, but does not yet have discharge plans. By the way,  he's in Chicago. From my door to the hospital, he is 1,742 miles away. I struggled with the decision on going up there or not. Actually, I'm still struggling with this decision. Obviously, I have not yet made the trip. If I get there when he is home, I can't do a thing. I can't even get in his house. OK fine, I know me. I can get in his house, by myself, but it wouldn't be the easiest thing to do, and while there is no snow on the ground now, I don't think I need to tell you that cement steps in Chicago in November are COLD. Do I go while he's in ICU? How dire is this situation? The nurses told me "Not dire. You don't need to come up right away." But then when? What exactly can I do when I get there? Not much. Just a lot of sitting, and probably getting my ear chewed off by Dad about how I shouldn't have spent the money to come visit. Matt can't get time off for work, so it would just be me. Or would I have to take Travis? No, I'm not ready to fly by myself with him. I need help on the plane when I'm alone, I can't carry my own stupid suitcase when I'm alone, so how in the heck do I wrangle a 19 month old, a car seat, a suitcase, etc? So my mom offered to come and help, should I decide to go.

Today, my mom is AT the hospital. She hasn't been admitted, they're just running some tests. Mom has a pretty painful nerve disorder and it has been causing her some problems lately, and her doctor preferred to send her to the hospital for testing.  Now I'm sure she'll be fine, certainly in the short term, but this afternoon, I felt like I was hit by the Reality Truck. Both of my parents in the hospital at the same time? No thank you. This evening, before Matt came home from work, when it was just Travis, Mommy and The Little Mermaid for the second time this afternoon, I broke down.  Everything about it sucks. Do I go to Chicago to be with my dad? Do I stay here so I can help my mom? Can I just run away somewhere and be on a tropical island, with a very large vodka-based drink in my hand?

I don't even have a point to this post at all, but if you read this, maybe just say a prayer or two for my family, and if they're near, hug your own parents. And kids. And siblings. And if they're not near, pick up the phone and call them to say "I love you." Yes, you even have to call your annoying brother and say "I love you, doofus."

The NICU: Part Two

We learned so much from the NICU nurses. Preemies are very easily overstimulated, so while you might be tempted to stroke your newborn’s soft skin, the parents of a premature baby are told not to. Touch is good, but still, almost firm, as if to say “Hey, I’m here, and that’s all that matters.” Because of that over-stimulation, our NICU had specific “touch times”. While we could spend all day at his bedside if we wanted, the only time we could hold him was scheduled, and scheduled around his feedings. Those were the times when he was checked over and bothered a little more than normal. We were encouraged to be the ones to care for him, taking his temperature and changing his tiny, preemie diapers.  I was blessed with a hearty supply of breast milk and quickly filled the NICU freezer, and my own. Unfortunately, after a week or two, Travis suddenly wasn’t tolerating my milk, and he was switched to formula. It got worse, and he was switched to another formula. Meanwhile, I kept pumping. And pumping. I grew bitter and resentful of the pump, and of the nurses who gave me a hard time about how much room I was taking up in the freezer. The hospital lactation consultant wasn’t much help, her advice seemed to suggest I was getting TOO much milk, as if that was a bad thing. I was frustrated and hurt. 

Hanging out with Daddy

Within his first ten days, Travis was moved to another room and to an open-air crib, which meant he was maintaining his own body temperature. This was excellent progress. Typically, there are around 3 big steps to get out of the NICU and go home: Not needing oxygen is a big one (though some babies DO come home on oxygen), maintaining his own body temperature, and learning how to eat. The Suck/Swallow/Breathe process is a difficult one for preemies!  First two steps were completed fairly quickly, so it should be any day now to bring Travis home, right? Unfortunately, feeding was a challenge. Travis was still not tolerating my breast milk, which was causing some upset stomach issues that had to be resolved first. He kept pulling his own feeding tube out. There were a few nurses who were more conservative in their care, and were hesitant to let Travis try to bottle feed. Pairing that with the stuffy nose he developed, many of the nurses seemed content in just using his feeding tube, and wouldn’t hear us when we said “but he’s showing signs of readiness! Please just let us try!” When Travis was around three weeks old, I called for a progress report, as I did every morning before coming in each afternoon, I learned that he’d taken most of his overnight feed by bottle. I was ELATED. I couldn’t get there fast enough that afternoon, and that evening, Matt filmed as I fed Travis a bottle for the first time.

Um, the VIDEO of this feeding goes here, but I can't get it to upload properly :(

It seemed like every time we would take a step forward, we took two steps back. Travis would do really well with bottle feeding, but his stuffy nose would get worse, and then he wouldn’t take a bottle at all. They would start slowly reintroducing breast milk, and his stomach would get worse. It was a long process. We loved being able to give him a bottle, it finally seemed like we were able to be parents, versus just sitting in a room with a baby. Going home was disorienting. I still hated leaving him every night, but it was never a sad feeling. All of our nurses would tell us he was really quite healthy, as far as preemies usually go, he was just born early. We were told that once his feeding tube came out, most babies would go home within about 48 hours, so just in case, we tried to get everything as ready as possible when we weren’t at the hospital.

On Saturday, May 7th, we started our day early, with a very long list of errands we wanted to get done. Matt, Mom and I went to Village Coffee Roastery for breakfast before heading to the hospital. We’d heard about them on a local radio show, and were anxious to try the John Wayne - a double espresso shot layered with heavy cream and a vanilla syrup. It was amazing. Matt and I each had two, (you read that right. We each had TWO double espresso shots. Please remember this.) and then went up to the hospital.  Upon our arrival, we noticed something different about Travis.

His feeding tube was gone!!

My beautiful baby boy, no longer tangled in tubes and wires and sensors and tape. I felt like I was seeing him for the first time, and it was incredible.  I wiped tears from my eyes and wanted to sing at the top of my lungs, I was so excited. The nurse sat down with us and started giving us instructions. We were given the option to stay overnight in the suite they had in the NICU - two very hotel-like rooms at the end of the hall. Its sort of a “trial run” before you take your baby home. The nurses are there at the push of a button if you need help (again, some babies go home just fine, but some go home with medications, on oxygen or other medical equipment) and you are fully responsible - finally - for all of baby’s needs before you go home.  Our nurse needed us to bring in his car seat for the “car seat test”, to make sure none of his vital stats dropped once he was strapped in. Some situations can cause a newborn’s chest to become compressed, or his airway blocked, and this is just one final step out the NICU door. Pass the 60 minute car seat challenge, and you’ve pretty much got a green light to go home.  (Review car seat safety here!)  We also needed to go home and pack an overnight bag to stay at the hospital. 

Car Seat Challenge

This is what Travis thinks of the Car Seat Challenge.

Now, you may recall the two double espresso shots Matt and I had at breakfast. I sat in front of the nurse, trying hard to listen to all of her instructions, and realized that I was hearing a muffled buzzing sound. I looked over at Matt, and he was actually bouncing, from one foot to the other, back and forth. Neither of us could sit still, we were both so hopped up on caffeine and excitement.  We stayed for his lunch feeding, then left to get everything we needed done, done. We rushed through every errand, none of them seemed terribly important anymore, and by late afternoon, we were headed back to the hospital.  After getting a few more instructions, Melva, one of our favorite nurses, led us down the hall with Travis in his bed. No more monitors, no more tubes, no more beeping anything. Just Travis and his parents.

And collectively, I think we all got about forty-five minutes of sleep that night.

What an experience!! Matt and I were so elated to finally have Travis, even if we were still in the hospital. But as all new parents learn, that first night with the baby is not a peaceful, slumbering, cozy night. Travis, like most babies, was a very noisy sleeper. Lots of sighs, little cries, and he still had a stuffy nose. Travis was still on formula, which had to be kept with the nurses, so any time he needed to eat, we had to call the nurse. The formula had to be used within an hour, any longer and it had to be thrown away. I think, unfortunately, we wasted a lot of formula that night, and poor Melva walked up and down that hall about fifteen times. Travis just wouldn't sleep, but he wasn't wet and he didn't seem to want anything we could offer him, so we figured he must have been hungry, but he wasn't. It was a very long and exhausting night. Matt and I dozed in shifts, and by dawn, we were both completely spent. 

We were allowed to stay in the suite all day if we wanted, but we were both so tired, there was just no way it could happen. And while I knew the next morning wasn't the day Travis was coming home, after having him to ourselves all night, taking him back to his room and to the care of the nurses didn't feel right. I felt like a failure. He should have had a better night. We should have had a better night. I should have known what I was doing. I knew that most of my emotions were from exhaustion, but my heart was heavy. We arrived home at lunch time, and fell fast asleep. The last thing Matt said to me before we drifted off was "Happy Mother's Day."


Check back soon for The NICU: Part 3 - Bringing Travis HOME!

The Park

Travis, like most little boys, LOVES to be outside. Now that the weather in Arizona is finally a cool and comfortable 80 degrees, we finally have a chance to go to the park! Our very family friendly neighborhood has both an elementary school and a park, both within a five minute walk. Most weeks, we try to walk to the park at least once.

The swings at sunrise

Though Travis is still a little small for most of the playground equipment, he's learning to enjoy playing in the sand, yelling "dirt!" as it slips through his fingers.  So far, the few times we've been to the park, he's stayed pretty close to me, a little tentative of his surroundings and just happy to be outside.

In the last week or so, Travis has very definitely entered The Terrible Twos. He has become more defiant, challenging everything we say, running away giggling and hiding at the simplest of requests - diapers, dinner, you name it.  I know that in the past, when Travis is acting out and is very frustrated, its usually because he's bored; less stimulated by his toys, less interested in his surroundings, and these are prime times to head to the park. We get some fresh air, he gets to run his little legs off until he passes out on the walk home, and I get a few hours of quiet time while he naps.

And that's where I'm stuck.  I want so badly to take him to the park right now, but I feel like I can't take him alone. If he runs into the grass, I can't get to him easily. If he runs into the sand, I can't get to him at all. He can't climb the playground equipment (yet!) so that's still safe, but if something were to happen - if he fell, if he got stuck - we're both stranded.

This is just one of the frustrations I've encountered, being a mom on wheels. There are places I would love to take him, things I would love to do, that are just plain off limits for me. We can go to the park as a family, and I feel much more comfortable having Matt there to help corral a toddler, but they play on the slide and I watch the diaper bag.

 

Our pumpkin patch trip was similarly frustrating. Thankfully, it hadn't rained recently, so the ground was hard and dusty and I was able to get around in the dirt, but the mini hay maze? Off limits to Mom. The Petting Zoo? Not accessible. (And covered in animal poo, so that one was OK by me). The owners were really accommodating as far as getting me on the hayride and to the pumpkins, but our planned day of fun on the farm was pretty much "pick a pumpkin, go home" because there just wasn't anything else I could do too.

I know there are things to do around here that are more inclusive - the zoo, the splash pads, the railroad park, etc. But when the things Travis loves are things I can't participate in as easily, it makes it hard to sit on the sidelines.

The NICU: Part One

Unfortunately, due to circumstances we’ll never know or understand, I wasn’t able to make it full term, and Travis was born at 31 weeks, 5 days.  According to the March of Dimes, in the United States, 1 in 8 babies is born prematurely. In Arizona, 12.7% of babies born in 2011 were born before 37 weeks, and Travis was among them. It definitely wasn’t something we’d planned for, but given my turbulent pregnancy, we were told to expect it and forced to accept it.

Most women have a picture in their minds about delivering their first babies. Hearing the sweet little cry and being handed a warm, cozy little bundle almost instantly. Getting to nurse as soon as possible. Staring lovingly into the bassinet with your husband by your side.  You imagine something like what you’ve seen on TV or in the movies, because that’s all you really know to expect. My experience was nothing like a Hollywood birth. Travis squeaked when he was born, and it was all I could handle, just knowing he was even breathing. He was held up to me, but barely, and only for a moment, before the NICU team, about six people, doctors and nurses, took over. I didn’t know what he weighed, how long he was, if he looked like Matt. I barely knew he was OK. As they prepared to take him out of my room and down the hall to the NICU, Matt and I agreed that he would go with Travis. I obviously wasn’t going anywhere, covered in blood and goodness knows what else. I was cleaned up, stitched up, and lay there recovering, wondering if all of that had really just happened. After a while, Mom went home, and the nurses left the room to tend to other patients. I was alone. Just as quickly as Travis had come into this world, my room emptied, and I was alone. It was just after midnight. I could do nothing, and I felt very helpless. “I should be doing something”, I thought. “I need to know what’s going on.”, but all I could do was wait for someone to come back, with news, with photos. The longer I lay in that room alone, the more worried I became.

Finally, Matt came in and told me Travis was fine. He didn’t need oxygen, thanks in large part to the rounds of steroid shots I’d received to help boost his lung function. He had a feeding tube and needed an IV. Once I was moved to the recovery room, I would be able to see him - briefly.  My belongings were gathered and I transferred carefully out of the bed and into my wheelchair. Oooh, that was tender. I moved slowly. Or at least, as slowly as I could manage, nothing would keep me from him for very long. We entered the NICU and walked down to the end of the hall to the room he shared with three other very tiny babies. Once our hands were washed and sanitized, I could see him, but again, just barely. He was surrounded by nurses. One was holding a small flashlight to his arm so that they could try and find a vein to start an IV. You could nearly see through him. The staff struggled to get his IV started. He has his Mommy’s veins, difficult to stick, and his tiny size made finding them even more challenging. There was that helpless feeling again. I still couldn’t even see his face, and I reached over and picked up the photo that the hospital had taken and printed. I lingered briefly on the thought that so many other people, Matt and my Mom included, had already seen more of my son than I had.  

There was nothing else we could do that night, and so it was upstairs to my tiny recovery room for us. I ate a very late, cold cheeseburger at 2am, absolutely famished, having not eaten in around 18 hours or so, and we passed out soon after; me, uncomfortable and still hooked up to too many things, and Matt, uncomfortable in a weird recliner-cot.  The next morning, after brunch and an uncomfortable shower, and a lesson in using a breast pump, we went downstairs to the NICU. Finally, after about twelve hours, I was able to hold my son, for the first time. They call this skin-to-skin time "Kangaroo Care", and it is absolutely vital to Preemies. It can help regulate their body temperature, it can help regulate their breathing, and so much more. The nurse placed him on my chest, covered us with a warmed blanket, and left the three of us alone. It was so still, so quiet. Travis seemed lighter than air, weighed down only by the cords and cables and tubes and wires. Again, this was not your Hollywood Newborn. No flowers, no balloons or stuffed animals. Visitors were to be very limited and everyone, including the parents, must sign a release every day stating that they are healthy.  Matt and I just sat, enjoying the first real moments with our son, for as long as we were allowed. Even with all of the medical stuff all over the place, in that moment, it was just the three of us, in our own world.

Our first family photo, 3/31/11. Not yet 24 hours old.

Eventually, I ran out of energy, tired and sore, and the nurse came and put Travis back in his pod. We went back upstairs, probably ate lunch, though I couldn’t tell you for certain, and rested. I hurt in ways and places I didn’t know were possible. Nothing that Ibuprofen couldn’t handle, but my whole body felt different. And why wouldn’t it? 24 hours earlier, I was pregnant, and now I wasn’t.  My body had grown to accommodate someone else, and now there was a vacancy. I felt empty, and in more ways than I was able to recognize at that point.

By late afternoon, we went back downstairs and sat with Travis. Too nervous to disturb him for Kangaroo Care a second time (I think one of the nurses was against it, having already “had a turn” that day, though in the next day or two, another nurse would encourage it as much as we were willing to do), we just sat, talking quietly about the things that had happened, the things we needed to do. We were both so surprised to see blonde hair and blue eyes, having assumed that my brown eyes would dominate and the dark hair in Matt’s family and in most of mine, would as well. We stared at his perfect, pink skin and tiny, features. I wondered how I would ever trim such tiny fingernails. A while later, I needed to pump again and was beyond exhausted, and we said goodnight. I hated the thought of leaving him for the night, it felt like I was turning my back on him, and for a brief moment, I sank into Matt’s arms with tears in my eyes. To go through so much to make sure Travis arrived in this world at all, and then have to walk away from him each night made my heart ache.  We fell asleep watching a movie on the tiny, hard to hear and hard to see ceiling mounted television, and so ended our Thursday.

Tiny, tiny Travis

Friday was filled with paperwork and packing, knowing that I would be discharged later in the day. We spent the day back and forth to the NICU and Travis’ bedside, talking to family and filling them in on the last few days, and around 8pm, after a busy day, we left the hospital and brought home instructions and paperwork instead of a snuggly, healthy baby boy.  For the next six weeks, I spent every SINGLE day at the NICU. I wasn’t cleared to drive, so my mom and I usually spent the day there together. I went from bed rest to unstoppable, nothing was going to keep me from spending the day at the hospital. My son needed me there, and I didn’t want to miss a moment.  I missed work events, time with friends, time for myself, time with my husband, but none of it mattered. There was still a lot left to do before the apartment was ready for Travis, and it all needed to get done, having no idea when he would be ready to come home. I was tired of bed rest and being told I couldn’t do anything, and now I felt the need to do it all. Three days after being discharged from the hospital, after a whirlwind weekend of shuttling back and forth, our Skyped baby shower, and tons of errands, I collapsed. We walked in the door that evening, after spending the day with Travis, and I immediately burst into tears. I was overwhelmed and exhausted. I needed a break, but how could I stay home? I couldn’t. I knew where I needed to be. I gave in to the exhaustion in the slightest way, allowing myself the morning, sleeping in a little, getting some work done, but by lunchtime, I was in the NICU. 








Stay tuned for The NICU Part Two!