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.

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!