Fighting Insomnia: Battle On

I know that I've been talking about Insomnia a lot lately, but when happens, it affects almost everything. I guess when I slept through the alarm and my GI appointment on Thursday, it was the final straw.

Last night I was in bed by 11 PM, which is way better than 2 or 3 AM, after staying up all day, instead of going back to sleep.  I woke up at 2 am, used the bathroom and went back to sleep. Roo woke me up a little after 7 AM and I had to drag myself out of bed. All morning long I had to deny myself the luxury of sitting too long because I would start to nod off. It literally feels like I've been sleep deprived and I need to make up lost hours of sleep, even though I've had plenty.

I did have a small breakthrough last night though. I realized why it's so hard for me to sleep at night, yet so easy for me to rest during the day--I'm worried about Roo. This dawned on me as I had a slight panic attack getting ready for bed. I was pretty close to deciding between giving up or taking anxiety meds, when I decided to use a favorite old movie as a distraction.. That's right, I cuddled up on a makeshift bed on the couch, and drifted off to the movie "Ever After" the same way some kids need a favorite toy or blanket before they can fall asleep. *Sheesh!* I really am a mess. Anywho, back to Roo.. I have trouble sleeping at night because I'm worried about my daughter having a medical emergency or needing me through the night and no one knows to help her or does help her, because Terry and I are asleep.. And Terry needs to sleep because he goes to work everyday, therefore, leaving me unable to rest peacefully until I reach the point of exhaustion.. (<~ All of this was going through my head while I was having an anxiety attack.) I sleep for a few hours, and then I'm able to get up and get her to the bus stop/school, and go back to sleep, and sleep soundly, until 1 or 2 PM... because I know she's in good hands, and someone is watching out for her.. therefore taking the burden off of me.. That is a major compliment to Roo's school, btw.. It shows how much I trust them. Another thing I realized is that I claim to be a Christian, yet don't have faith enough in God to take care of Roo through the night, and wake us up if she needs us. How hypocritical of me. :-(  This realization has also encouraged me to do better, & remember to put my daughter in His hands each night.

This anxiety has caused me to totally screw up my sleep pattern. And I don't want to embarrass myself by being wrong, but I think that Dr. Google said that things will get better in a few days if there isn't a real underlying problem. Here's a link for those thoughts... Circadian Rhythm Sleep Disorders. Or maybe the anxiety IS the underlying problem.. *sigh* Anyway, I'm still going to try to "reset" my sleep pattern over the next couple of weeks before making a doctor's appointment. At least that way I'll have tried. Maybe I don't have insomnia at all? Because usually I can sleep eventually, just not as well as when somebody else is watching Roo. Sad to say, but this horrible struggle may have started in my head.

A Rambley Little Post About My Day, Insomnia, My Emotions, and This Blog

I'm reevaluating my commitment. A 365 blog challenge, though sounding exciting, is actually sort of .. hard. Because, as much as I don't truly care what other people think (or at least that's the stand I'm taking), putting all this out there on the internet.. is borderline over sharing... Obviously I've already missed several days, but I am trying to keep up with it... and to say I'm putting it all out there and not, would make me a fraud... & that ain't right!

Today has been an emotional roller coaster.

It started out happy because we made it to the bus. Yay! Any day that we make it to the bus on time, is almost always a happy beginning.

Then I was excited, because I realized I had a whole extra hour to chill before I needed to get ready and head up the road to my own GI appointment. The whole lacking sleep thing was kicking in, so I decided to rest. Rest I did. Right through the alarm, and several phone calls, and I finally woke up 4 hours or so later to my cell blasting out it's ringtone over and over again.

Then I was shocked because *GASP!* my appointment was 45 minutes ago.

Then I was ashamed because I realized I overslept and caused, first my sister, who works at my doctor's office, and then my mother, who was called by my sister, to worry--and I mean really worry. They thought something happened to me on my way up there.

Then I was annoyed, because my mom started to lecture, literally, lecture me for sleeping through my appointment. I kept trying to tell her I needed to go because my sister was trying to beep in, and she wouldn't listen, and when she finally did, my stupid smartphone thought I hit reject instead of accept.. and so I ended up rejecting my sister's call.

Then I was sad, because I really upset my sister. If you're reading this (which I doubt she does), I'm really, really sorry. I prefer not to make myself look like a loser by not showing up to an appointment, and I'm sorry that I made you worry.

Then I took my meds, ate breakfast, did some domestic duties, and gradually my sadness started to fade.

I noticed when I was eating that there were a few flurries outside, but when I went to get Roo from the bus stop, I found a couple inches of snow on the ground. I didn't have time to dust off my car, or put on gloves and a heavy coat, so I just shut my car door hard (made the snow fall off) and turned on the wipers. There was still limited visibility, but nothing to worry about since I was only going maybe half a mile up a gravel lane.  I still had time to turn the car around when I got to the stop, so I thought I would go through my neighbors drive. Unfortunaly, his drive exits on a slope... and I got stuck. I was so embarrassed. Luckily, my husband was coming down the road on his way home from work. He helped me get unstuck, teased me a little bit, then told me to go home and that he would get Roo. Wasn't that sweet? Part of me wonders if he thought I'd get stuck again, but some things are better left unasked. ;)

I've avoided my mother's phone calls all evening. I'm hoping that giving her a little time to cool off will make things go smoother when we talk tomorrow. The next couple of weeks are going to be focusing on retraining my sleep patterns. It's bittersweet. I like sleep, but I want to sleep at night, and I guess if things don't get better I have yet another problem to talk to my doctor about. I really don't want to take anymore medication though.

Doing The Insomnia Cha-Cha

Today I slept all day.. it was both a blessing and a curse. I have so many  things that I need to get done, and I slept all day. The insomnia has gotten to the point that it's really, really having a negative impact on my life. I'm missing appointments. Falling asleep when I should be awake. Things have gotten really bad in the housework department. And I'm lost to on how to fix it. (Not the housework, the insomnia.)

It all starts with a night or two of my body literally not letting me fall sleep. I lay there for hours, and eventually I get up.. maybe have a snack and watch some TV. Eventually I fall asleep watching a movie. One time I didn't though. In fact, I was still awake when my husband got up for work the next morning. It thoroughly ticked me off, because I wanted to sleep, but I couldn't. 

Normally, I will sleep for a few hours, get my lovely daughter to the school bus and go back to sleep. When I wake up I feel guilty, and make myself promise that I will do better... But that night, I'm not tired because I was able to rest during the day. And the cycle continues, until I go through a bit of exhaustion that makes me sleep.. a lot... too much.. Like all morning, maybe till 1 or 2, and then early to bed that night.. maybe 8:30 - 9 PM..  But then I'm back on a semi-normal schedule for a couple of weeks. 

I blame it mostly on hormones, & there's not a lot I can do about that since birth control makes my depression worse. As one doctor put it, "You have to choose your poison." Right now, I'd rather not have to deal with any of this. I despise this chaos.  

Pinterest: For When Your Mother Was Born With Perfect Eyebrows

Not a whole lot going on here today. My brother-in-law is in the hospital, very sick with pnuemonia from the H1N1 flu virus. Say a prayer for him if you're the praying type, he needs them. Terry has been traveling back and forth to the hospital a lot this weekend and everything is thawing out around here. Halfway to a hospital in Indianapolis, he hit a large chuckhole on the highway and blew a tire. There are chuckholes everywhere! He was able to get the spare on and continue to the hospital, but on the way home he hit another hole and blew the donut. In his defense, it was foggy and pouring down rain, so it wasn't like he saw them in time to miss. I'm just glad that he wasn't hurt either time.

Today, he took the car to a guy that another brother of his knows & had a couple of new sway-rods put in for $20. Ultimately making what would have been a nearly $200 fix at a shop (including parts) for $50 by buying his own parts and going to a former mechanic. Seriously, it took "The Guy" 20 minutes to put both of them in. "The Guy" is awesome.

After that, we had McDonald's for lunch and I locked myself away in the bathroom. I noticed that I was looking a bit frazzled when I looked in the mirror, & since Terry wasn't going anywhere, I decided to pamper myself. I have fine, multi-textured, naturally curly hair & if I don't put anything in it (gel, mouse, etc) it puffs out. Hugely. In elementary school, I wore my hair in a braid nearly everyday because of this, and even with all the Freeze-It my mother put on the top of my head, I would have a top hat of frizzies after recess. I still have vivid memories of kids going "You look like Bozo the Clown!!" and the whole class laughing.. but it's not like I'm scarred or anything.. [sarcasm]   And my darling middle sister would always call me "MUFASA!" when she brush out my hair.. In fact, sometimes she still does.. Good times. Okay,  yeah, back to my frazzled look! So I gave myself a coconut oil treatment, and took extra time to take care of me.

Looking in the mirror again, I noticed my blonde Marcho Grouch eyebrows and gathered my weapons of choice.. a.) eyebrow pencil b.) tweezers c.) facial cleansing wipes for afterwards d.) my daughter's ipad with the Pinterest app open. Weird right? That I needed the Ipad? But I pinned a pinned that solved all my eyebrow worries. My mother has amazing eyebrows. They look professionally done, and she's never had to pluck them. Ever. So it's not like she could show me how to do it. And my middle sister, the same darling one mentioned above, inherited these amazing eyebrows. My oldest sister & I share the special joy of inheriting dad's. They bear a slight resemblance to shrubbery. They're large and bushy. This sister was also friends with a couple of diva's who showed her the tricks of the trade. I did okay, but wasn't usually satisfied. Now, honestly, I'm a little confused to what this website is about, but whatever it is, they give great advice on plucking eyebrows.

That's pretty much my day. I've started working on Roo's Birth Story, so that should be coming out soon, but tonight I'm going to finish watching Dance Moms (DVRed)  while I wait for clothes to finish drying.  Tomorrow I start a new workout routine. :)

Not Quite A LIttle Lady

The little redhead is going through a mental growth spurt. She's finding humor in things I wish she never would. She's watching cartoons and animated movies that we would have never thought possible just a year ago (almost makes me cry tears of joy thinking about it). Like the Chipmunks movies, Cinderella, etc., and yesterday she laughed through the beginning of Stuart Little 2 (AWESOME).

Today, for the first time ever, she crawled into the dryer. To some of you, your like, "huh? what's the big deal? my kid started doing that when they started walking." Well, mine never did. She loved opening and shutting the dryer door (over and over again), but it never occurred to her to climb inside it. Today she did, & it was a proud moment. So proud, that my hubby ran and grabbed the camera and snapped some photos. Isn't she cute??

Another new(er) thing is that she loves to make herself burp, and she thinks it's funny. And if she starts giggling out of no where, seemingly for no reason, wait for it. Chances are good she's going to start ripping off some farts. Nasty, stinky, smelly farts. And she thinks it's so funny!

Yesterday, I was trying to have a few minutes of serious conversation with my mom on the phone and I told Roo that she was going to have to wait 5 minutes & then she could talk to grandma. She made it maybe 3, and crawled up on my lap with a sly smile on her face. She leaned over right into the reciever (aka my face) and forced herself to burp 3 times! I was so shocked! She thought it was so funny, and refused to say excuse me until she realized she wasn't going to talk to grandma at all if she didn't. Yes it was funny. It was hilariously horrible, but I just can't let her get by with this stuff or she'll think it's okay to act that way all the time. There's a preschooler trapped in my 1st grader.. but for all I know, first grade girls might find toots funny too. ;) It's easy to forget what the norm is.

My Name Is Cassie, And I Take An Anti-Depressant

Stress can bring out the best & worst in people. As a parent of a special needs child, I have a lot of stress. Everyday stress that all parents have, added stress of avoiding meltdowns, dealing with meltdowns, appointments with specialists, financial stress (will insurance follow through?), and just plain old freakin stress that everybody has. If you're like me, and depression runs in your family on one or more sides, chances are good you're going to need an antidepressant. All that stress is going to eventually kill whatever was repressing that characteristic trait you were born with, and you're going to have to do something about it.

There are all kinds of stereotypes that comes a long with taking medication for depression or anxiety. Your crazy, your unstable, your weak--None of which are true. You know what I think? If you have the courage to tell your doctor that things aren't okay, that you need help, you're brave. And once you start to feel better, you walk around like billboard for happy pills. Suddenly, you just want to spread the love, and people are going to react to you. Don't let them bring you down. Do not be ashamed for taking something that helps you become healthy & stay healthy. Be a part of the movement that breaks those stigmas.

I take an an antidepressant and anxiety medication daily. I am not ashamed. I went for years thinking that something was wrong with me, because I was struggling to live happily everyday. There were lots of tears, lots of anger, moodiness, and it had a negative impact on my health, my marriage, and who knows what else. People would often call me strong and put me on a podium, but in reality, any emotional strength I mustered to get me through a hospital stay and/or home treatment, would crumble into a bout of depression after the trouble passed. How did this effect my health? I am 29 years old & I've had shingles 4 times. Last year a colonoscopy (yes, I had one at 28) revealed 7 polyps, 2 of which were precancerous. I have esophagitis and acid reflux that I have to take  medication for daily. For some reason, nobody has ever given me a hard time about that. I have had only a handful of major panic attacks, but I was having small ones before I even realized what they were. A couple of years ago, a massive one landed myself in the ER, and it started the ball rolling to go back on medication.

I'm not saying that taking anxiety or antidepressant medications sooner would have prevented any of these, but I probably wouldn't have had shingles once. Who knows? And it's not a cure all. I still have bad days, but I have more good days. Sometimes I even get stuck in a rut, but it doesn't last. Please, if you're struggling, don't be afraid to talk to your doctor and get some help. Sometimes just talking to another person about what's bothering you can make a big difference.

Why does Roo have a feeding tube?

Today was pretty uneventful. Anything exciting that happened was posted on my Facebook page. Terry wasn't able to go to work today, & we are dealing with extreme cold temperatures.  It's  still unclear whether he will work tomorrow or not, but school was cancelled earlier today.

I still feel like blogging though, so here's a little (yeah right!) back story, our history, experience ..whatever you want to call it.. with feeding tubes.

Roo's Tubie

One day, towards the end of August in 2006, I was checking into the OB ward at the local hospital. I was scheduled to be induced, because, even though I was just at 38 weeks, I was huge. I was handed a gown, got settled in, hooked up to the various monitors, and given the first inducing drug. I was told that it would take about a day for this one to fully take effect and that I wouldn't actually go into labor  until the next day.

The nurses left the room and Terry and I sat there excited, nervous, and chit-chatty.. For about five minutes.  At five minutes later nurses rushed into our room, throwing an oxygen mask on my face, turning me on my left side, yanking out the cervix softening medication, and about giving Terry & I both a heart attack. Apparently, I was already in labor, and the baby didn't like the medicine they gave me. Little Roo's stats went back to normal and everyone calmed down. Then I had a contraction.. A big one. And I didn't feel it. "You didn't feel that?" The nurse asked with raised eyebrows and I shook my head no. In fact, I was perfectly comfortable, sitting up, laughing with visitors until it was almost the end.

That's how Roo's birth story began, but it's a long one, so I'll fast forward 8 hours later to a spinal tap, and  an emergency c-section. Trust me, I will go into more details about this later. It deserves it's own post, really. When Roo was born, she had dangerously low blood sugar and a 2 vesseled umbilical cord. In case you didn't know, there are supposed to be three blood vessels in an umbilical cord, and while it doesn't seem to make a difference in some children, in others, it causes them not to get the nutrients they need while in the womb. By chance, one of the nurses spotted a small split in the back of the roof of her mouth. This automatically won my sweet baby a ride by ambulance to Riley Hospital For Children and a bed in their NICU (Neonatal Intensive Care Unit) for further testing.

Terry holding Roo while in the NICU

For some reason, my spinal tap wasn't wearing off as quickly as they expected. In hindsight, I think this was a gift from God. There was so much chaos outside of my quiet room. A group of ...it feels mean to say inexperienced, so lets just less experienced and . .... Okay, I don't have a lot of nice things to say about this particular group of the nurses, so what's it matter anyway? A few weeks before, a new hospital opened and almost all of the experienced OB nurses switched to that hospital. The ones that I had in the OR were excellent, and another older lady--the one who actually spotted the cleft palate--they were great. The first hours of Roo's life were spent being poked over and over again by nurses who didn't know how to start an IV in a newborn. A friend told me later that someone had told them that the team from Riley would start one when they got there, but still they kept on trying. Even now, thinking about it ticks me off. So it's good that I didn't see that, but if it wasn't for this older nurse, I wouldn't even have held her at all before they took her to the children's hospital. I'm so grateful for this woman. To this day, we've never taken her back to this particular hospital.

Sweet Pic with NG Tube

From day one, Roo had a feeding tube of some sort. In the first few hours it was a small plastic tube that went through her mouth and down into her belly, that allowed her to be given fluids to raise her blood sugar. The next time I saw her, nearly 4 days later, the plastic tube had been moved to her nasal passage, where it went down the back of her throat, through the esophagus, and directly into her belly (same as the oral one, but through the nose). This precaution was taken because she hadn't had the proper testing to determine if she aspirated fluids when she sucked on a bottle. This is normal protocol for babies born with a cleft palate. We had sessions with feeding specialists during our NICU stay to help Roo be ready for the test when the time came. Unfortunately, she still didn't pass the test, called a swallow study, and we were eventually sent home still feeding her through the tube that went through her nose. This type of feeding tube is called an NG tube. It's usually a temporary fix.

Roo and Mamaw.. The white tube
coming out under her shirt
attaches to a feeding pump.

Roo's next hospital stay was the one that taught us the words "biliary atresia" (a form of pediatric liver disease), and "Kasai" (a possible life saving surgery for infants with biliary atresia), and ..so many other words.. During Roo's Kasai surgery, she had a feeding tube placed that went directly through the abdomen and into her stomach. It seemed like a good idea. And it was. Still, we looked forward to the day we could give our baby a bottle like a typical baby, but that day didn't come. We left the hospital seven weeks later with a central line that she received TPN through (it's like IV food), and a feeding pump that hooked up to her feeding tube and pumped small amounts of formula into her belly 24 hours a day. She had a really hard time with acid reflux at that time & this was supposed to help her keep foods down. Nobody really explained how things were supposed to be, but she was still gaining weight despite all the vomiting.

When she was 4 months old, the doctors decided that she was ready & she had her central line taken out. A few days later, Dec. 26, 2006, she was admitted back into Riley for RSV, which we always assumed she got during her visit to have the central line removed. It was during this stay that she was switched to a different reflux medication, Prevacid, & I'm not exaggerating one bit that it was a life changing moment. Before, she would reflux so often, and not know how to spit it out, and we would have to use huge suction bulbs to get it out so she wouldn't choke. And you're probably thinking that common sense would have told us to say something, but we were discharged way. We thought that this was just how things were going to be for her.

Pudding High :-)

At around 8 or 9 months old, she passed her swallow study. And after the many different bottles, including some pretty fancy ones that the hospital gave us, the little booger still wouldn't take a bottle. In fact, her suction was so poor that she wasn't able to use a pacifier without holding it to her mouth.. Which she did, cutely. :)

The fact that she has such a poor diet now astounds me because we worked so hard with her. We had to teach her everything. We would put a little bit of baby food in her mouth and she would look at us all wide eyed like "What am I supposed to do with this?!" and eventually it would slide out. Then we started dabbing just the teeniest bit of baby food on her green soothie pacifier and she would hold it to her mouth and yum-yum-yum it off. Gradually we were able to increase the amount on the pacifier and a few months later, she would take a bite of baby food off a spoon and stick the paci in her mouth on her own to help her swallow. That was the only way she knew how to swallow it.

Smile you know you want to!

At some point we started to give her those little Gerber cereal snacks--the ones that basically melt as soon as they touch your mouth--and she learned to chew. Then her Occupational Therapist suggested Cheetos. Everything changed after that. Gone were the days of baby food. It was pudding, suckers, go-gurt, chicken & stars soup, spaghettios, vegetable soup... canned corn, peas, and carrots... Then, as she became older, she would chew on pizza crust, eat tiny pieces of cut up pizza, and bologna, and cheese and.. the list goes on. We were so excited! Our church was praying, everyone, all of our friends and family, were hoping that she could get rid of the feeding tube. It seemed everyone was excited with us. I began giving her her medications by mouth, and she didn't mind most of them. The Zyrtec never went well, and I don't blame her. Ever tasted that stuff??

She would only drink out of
this kind of cup for the
longest time.

For six months she took everything by mouth and didn't use the feeding tube. For six months a child that was once diagnosed as "failure to thrive," grew and gained weight, and supported herself. We were right on the verge of calling doctors and letting them know that the time had arrived and she was ready to have her tube taken out. Then she got sick. Cholangitis (an infection in the bile ducts) put us in the hospital again. That was what usually put us in there. And she stopped eating. She just quit. Even after we came home, and she was better, we would start to gain momentum, she would go back in the hospital, and stop eating all over again. I don't know exactly when it happened, but gradually she quit eating most foods.

Cheerios and fries,
meal of champions! ;)

Today, at 7 years old, she will willingly eat animal crackers, pretzel sticks (or twists--never both at the same time), sometimes goldfish crackers, McDonald's french fries, cheerios and Kroger cheesy puffcorn. Rarely she'll eat carrot sticks, and will only drink milk. That's it. She gets pediasure through her feeding tube while at school or on the go, because she refuses to eat anywhere but home or my parent's house. She doesn't take any of her medications by mouth anymore.

Oh my gosh, she touched it! ha ha

Honestly, at first it was heartbreaking when we realized how far she had regressed. Devastating even. Not only were we disappointed, but we also knew that other people were too. Church folks, the ones who prayed so hard for her, would get confused looks on their face and say, "I thought she was over that," when they saw us giving her a bolus (fancy word for feeding her through the feeding tube). And it hurt. A lot. Now.. Now it's just annoying. Now she's a big girl with her own ideas of what sorts of food should be eaten. Sometimes she won't even eat her normal stuff because she's so repulsed by what's on our plates (think "onions"). Now we don't beat ourselves up over things we can't control.. like foods that she won't eat.

So, why does Roo have a feeding tube? Because she needs one.;)