Roo's Birth Story: Part I

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 almost the end. 

We called our parents and loved ones to let them know about the change in plans, as we were assured that this baby was coming today. A couple of hours later I was dilated to 4, but still in no pain. Occasionally there was some pressure, like a hug, but nothing hurt. So when my OB/GYN came to see me & offered an epidural, I refused. She was a little surprised, but okay with it once she realized I wasn't trying to be brave. 

An hour or so later, there was some concern for my baby because of her earlier fetal distress. My water still hadn't broken, but my doctor wanted to hook a special monitor up to Roo that could only be done once my water broke. It was decided that it would be in everyone's best interest to break my water manually. Now that was uncomfortable! It didn't really hurt, but felt like a little pinch, and then GUSH.  That gush  definitely makes the top five of the most disgusting things I've ever experienced in my life. There was SO MUCH amniotic fluid. I didn't think it was ever going to stop. 

Things started to progress quickly after that. I still wasn't in any pain. In fact, I couldn't stand talking to people while I was laying on my back, because it was putting a strain on my neck trying to look at everyone.  So my bed was adjusted to a sitting position that left my feet flat on the cushiony mattress that continued to  support my legs and let me sit comfortably. It was an amazing bed.

Nobody wanted to scare me, but the fetal distress had begun again. My doctor informed me that we needed to do an emergency c-section, and that an epidural was no longer an option. I would have to have a spinal tap. I was so scared. People came in to wish me luck and give me love before they wheeled me down to the OR. I didn't realize what a rush there was until the OB/GYN looked at my husband and said, "Dad, why aren't you in scrubs yet??" She nearly ran out of the room to go fetch some.

The last 5 minutes, while things were being prepped elsewhere, I was prepped by being ready to go. Lying flat on my back, the contractions started coming on stronger. And. They. HURT. My sweet pastor was talking to me close to my face, probably praying for me, reassuring me.. I don't even remember. What I do remember is asking her through clenched teeth to please get out of my face, that I was having contractions. Everybody got a giggle out of that, even her.. Wait, except me, I wasn't laughing anymore. :-)

I was so scared as they wheeled me down the hall that my teeth started chattering and I was trembling. I think they thought I was having a medical issue, because several looked at me and asked if something was wrong. I told them that I was just scared and on we rolled. 

Once in the operating room, they were quickly prepping me for the spinal tap.. I was still so scared. I didn't think I could handle the needle. I wish I'd never seen one. I've never done well with blood draws  & 3 trimesters of Childhood Development Classes in high school had given me a healthy respect for any needles or instruments used during delivery. 

I sat on the table and started to cry as they cleaned the spot on my back, and a sweet nurse, with dark wavy hair told me to lean into her and that she would hold me with a big hug while they did the procedure. It sounded like she was praying over me as I cried on her shoulder, and that one moment gave me so much peace. I don't even know what she said, but I felt comforted. I was told to lay still, and after the medication took effect, and a blue screen blocked my view, Terry was allowed into the room. He sat beside me, held my hand, and told me he loved me while the tears silently rolled down my face. He wanted to take pictures, but I guess there were extra hands in the room, because one of the nurses grabbed the camera and said that she would take care of it. She even got a picture of the clock on the wall within a moment of her birth. 

Roo came out crying and covered in white gunk, and even though I have pictures, many of them are sorta of graphic with the blood and gunk, ..and mostly, very personal. I probably won't share many of those with you. Here's a photo of the 3 of us though. 

A previous post may have already told you about Roo's cleft palate, and how it was discovered.. And how she had very low blood sugar, and was needlessly poked over and over again by nurses who were  unexperienced with starting newborn IVs.. but that's the next chapter in this story. I will go over those moments in further detail the next time I write about Roo's big debut. ;-) Thanks for reading & God bless! 

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.;)

And.... It Snowed.

Have you ever wondered what it's like to be in a power outage with a special needs child? Grab a cup of coffee, settle into your chair, and listen while I tell you about my day.

The weather forecasters were pretty off on their timing of the winter storm starting, and I was hopeful that they'd be off on accumulations and temperature drops too. The day started off great. I worked on sanding down my future crafty spot off and on--a beautiful butcher block island that kept oozing a mysterious sticky resin left behind by previous owners & ultimately making it a junk spot. I did dishes, folded clothes & put them away, and as time went on I was feeling increasingly confident that we would keep our power on. So confident that I washed our winter coats. Roo spilled milk all over hers yesterday & I normally wash them all when I have to wash one.

Things were going well. Everybody was doing what they wanted. I proclaimed myself a maid for the day and informed my husband that he was now a manny (male nanny). The sink had just been loaded with more dishes--I'm not lucky enough to have a dishwasher (hired or electric), the dryer was ending  it's last cycle, and the coats were in the washer  waiting for the dryer.  Roo was occupied watching a favorite cartoon and Terry was outside shoveling snow.

The power went out.

...

The power came on.

.....

The power went out again, and this time it stayed off. And stayed off. And stayed off.

Before I go any farther, I need to tell you that my husband is an amazing man. He's the kind of man who pulls over to help people when they have a flat, not worrying that it could all just be a setup. He's the one who takes Roo back to the OR when she needs a procedure, because mommy just can't bear to watch her child be put to sleep, even if it is just anesthesia. Today was not his best day. I often think that he would sleep better/handle certain stresses better if he would take an antidepressant. In fact, I think that if he went on medication, I would be able to take less. ;) regardless of the way this day played out, this is not his typical character.

Roo was stunned, in awe that no matter how many times she flipped the switch, the lights would not come back on. I took out an old bill to report our outage and she brought me my debit card from the desk. The look on her face was priceless, "Pay it, Mommy, quick!" :)) It was awesome.

My husband came inside from shoveling and it wasn't long before he started panicking. He wanted to go somewhere. He was afraid that the power would be out for days and we would be stuck here in sub-zero weather. I had prepared for this storm. I had a plan. I was not abandoning 2 guinea pigs & a cat, packing up every single stinking thing that my daughter would need somewhere else, packing up everything that he & I would need when the risk of traveling the roads was greater than the risk of staying home. We had groceries, we have a gas stove that doesn't require electricity to stay lit, and with this being a small home, that would probably keep us warm enough. Even the paranoid part of me was okay because being home meant keeping the house warmer than it would be if we left, and the pipes would have less chance of freezing annnnddd I know that there is an increased risk of CO2 poisoning when you heat your home with the oven, but we also have working, battery operated fire & CO2 alarms. In my mind, we were good.

Then my brother-in-law called and said that we could all camp out at his house if we wanted to and that he had a spare room. From a social perspective, this was ideal, but even in fair weather, it takes about 20 minutes to get to his house and the heavy wet snow, combined with the horrible risk of being stranded, didn't make it worth it... to me. Terry was mad. He was freaking out, and mad. I said, give it a couple of more hours. I'm at least fixing supper and then we'll decide what to do.

Roo is ultra-sensitive to emotions. I don't quite understand how she can sometimes perceive a group of happy laughing people as funny one time, and terrifying the next, but we generally just take it as it comes. It sounds stupid, but when I sense her stressing I try to put out a calm, tranquil signal. I must be halfway okay at this because I've been called "the baby whisperer" on more than one occasion over the years. Anyway, Roo is crying because daddy is mad and mommy is irritated and -- ya know what, he was a jerk and I stood my ground. You don't need to know the details, the words that were said.. I'm not airing out the laundry. My point is, our kids play off our emotions, and if we can't hold it together, how can we expect them to?

There were lots of crying spells. Once when I told Roo she would have to take a break from the Ipad because we needed to make sure we didn't run out of battery life. Another time was when I broke down sobbing over the phone with my mother, because I felt like the weight of world was on my shoulders. Another offer was made to "rescue us" --a very generous, selfless, four wheel drive offer-- and I turned it down because we didn't need rescued. Then a state of emergency was declared.. that was the whole purpose of my mom calling and I answered the phone ready to tell someone off because no one was listening to me that I didn't want to go anywhere! "Is it a blizzard?!" I asked my mother. "No," she said. "Then why is everyone freaking out?!!" God bless her, she made me feel so much better. Finally somebody told me that I was doing everything right, that it made more sense and was a good idea to stay put.

A little while later, maybe an hour, the lights came back on. I'm praying and hoping that they continue to stay on, and glad that the snow bit of this weather is over. Temperatures are dropping very low over the next couple of days, making me look forward to that promised high of 28 towards the end of this week.

We Have To Go To The Store, Now

That was one of the first things my husband said to me when he got home from work today. Roo and I were standing there ("the welcome party" *snicker*), and there were no smooches, hugs or anything for us. It was all, "Get ready, I want to go before the crowds hit, blah, blah, blah.."

Okay, so I want to know what it looked like when the crowds hit, because Wal-Mart and Krogers were packed... Petsmart, not so much.. but WalMart and Krogers?? Oh my word! You'd have thought there was some sort of major Black Friday event going on, and it was only 4:00! I know snow is coming, but it's not supposed to hit until tomorrow night.

And people are rude! What has happened to us as a society that we think it's okay to give people the eye or storm off, or nearly run someone over with your Wally-Kart on purpose?!? If you're in that big of a hurry or someone is going too slow say, "Excuse Me".. You'd be amazed at how fast the waters will part. Sometimes.  That's what I did. LOUDLY.

Poor Roo! She'd had enough of crowds and stores and was in that unreachable place, sobbing her eyes out, and all I wanted to do was leave. But there were so many people checking out, even at customer service, it was like a gridlock. We weaved our way through check outs & came to the main way. It was jam packed with lines to customer service. There I was, standing there, just me with a child in my cart, who was crying loudly, obviously not trying to get in line, and only ONE person towards the end of a line looked at me and tried to move to let me through. Unfortunately, even after that one, young person tried to move, our eyes met and we both knew that even if she did get out of line, there wasn't enough room for me to get by.. So what did I do? I started playing my own round of Wally-Kart. "EXCUSE ME. EXCUSE ME. COMING THROUGH. YEAH, WE JUST WANT TO GET THROUGH HERE. THANKS SO MUCH." And Bam! It's amazing how fast people suddenly notice you when your about to run them over, teeheehee..

Roo finished her meltdown in the car while daddy checked out inside. Eventually, she calmed down enough to ask for some tissues (in her own way), and I put in a favorite CD of hers. That really mellowed her out. I don't know if she heard me or not, but all I could tell her when we got in the car, mid-meltdown, was that I understood, and sometimes crowded stores upset me too. I'd like to think that she did, but probably not. On our way home, we treated her to McDonald's fries for supper--her favorite--because she was such a trooper.. And, lets face it, after such a stressful shopping spree, nobody was up to cooking. That was our big adventure of the day, shopping.. stocking up.. and surviving. ;)

Let it snow, Let it snow, Let it snow.......

Until Tuesday. Tuesday has to be nice so the little redhead can go back to school. :))  Last night it snowed about 5 inches, and we're expecting quite a bit more on Sunday with some daggum cold temperatures.  One of my nephews decided to stay the night with us at my mom and dad's last night. It was kind of a last minute decision, and I wasn't sure how it was going to go. Roo is used to such strict bedtime schedule, that she's rarely up past 8, and I think he thought they were going to stay up late chasing each other & watching movies. I was so afraid he was going to be disappointed.

I really had to watch how I worded things with Roo, and head off any innocent errors that could have led to a meltdown. We didn't "go to bed," we "snuggled and read books" because "going to bed" is something that's done at home. It's a process that could in no way be something done at grandma's house, and Thank God the "snuggling and reading books" thing worked. And even though the tank running on empty is what put us out there, it was pretty awesome in the long run. After all the kiddos were finally in bed, I chatted with my momma for a long time and enjoyed the adult company. When we got up the next morning, Roo kept on spontaneously hugging me. Out of no where. Like, "Thanks, Mom, this is so much fun!" and that was really great, too. The kids played and had fun most of the morning and the roads were clear enough by 1 pm to take him home and run some errands.

My first thought when we ran out of propane on the first day of the new year was "Oh great, this is a awesome indicator of how this year is going to go," but later I realized that maybe it was more of a indicator of how good things are becoming and that, yes, there will be bumps along the way, but everything is going to be okay. Think about it.. We had space heaters, we had some place to go and a vehicle to get us there, and we were able to afford much more gas this time around and still have money left for food and other things afterwords. We are truly, so very, very blessed. <3

We Woke Up Cold....

This morning we woke up to the furnace trying to start over and over again.  And it was cold.

"We're out of gas!" Terry hollered.  "Poop," I thought and went to check the thermostat. It was at 63 so the furnace had only been struggling to heat the house for a couple of hours.

For those of you who haven't figured it out yet, we heat our house with propane gas. There's a big tank behind the house and we fill it up as needed. We were running low at the beginning of fall, but also low on funds. So, we only had a hundred gallons put in to get us by for awhile, & then we forgot about it.

This is how we started our new year--Cold & then Colder. Even after the space heaters got going, it was still chilly. I could have really used a shower this morning, but the thought of facing an icy bathroom afterwards drove all desire of that away. Not happening!

Roo was okay. She doesn't seem to mind the cold as much as we do, but allowing her to run around a chilly house seemed like a bad idea. She & I are constantly fighting off earaches and sinus infections lately, and the ever fluctuating weather is probably the culprit. So I plopped her in a chair by a space heater, stuck a hoodie & some fuzzy socks on her, and gave her the iPad. Tada! Problem solved.

Later we had dinner at my parents house (yummy lasagna & salad with rolls) to celebrate the New Year, and asked to stay the night & that's where we are now.. in a warm house, filled with leftovers, because the gas company charges an extra $150 to deliver on a holiday. My husband has decided to endure the cold at home though. He made several excuses.. anything from watching over the cat & the guinea pigs, to it would just be easier because I go to work in the morning, but you know what I think the real reason is? He doesn't want to share the guest bed with me and Roo. In a way I understand.... Even as I type this, she's laying sideways across a queen sized bed, hogging it.. But still, it's going to be cold tonight! I love him, but he's an idiot. :) I wish you all a Happy and Healthy New Year!