Confessions of Special Needs Parents: Tales from the Supermarket

Thank you, Loving Levi & Spectrum Circle! Next week's theme is "Don't lick that!" What's the worst thing that your child has ever licked?

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.;)

Make-A-Wish Turned Us Down, & I'm Ok With That

If you happen to have liver disease, or you are a parent of someone with liver disease, or maybe you're just really close or involved with someone who has liver disease, there is a great group on Facebook called "Liver". Through this group I've come in contact with a great group of people who know what we're going through  (or at least partially ;).

Some of the kids in this group are younger than mine and, as far as I know, have been through a lot less. I'm not downgrading their situation one bit either--a life-threatening condition is a life-threatening condition.  So when they were actually granted wishes, and I am talking more than one non-transplant, not even listed yet child, I thought, "Huh...." and applied for Roo to get a wish. When I did, I knew it was a long-shot. Ironically, I had just spoken with her GI doctor at liver clinic about her liver's prognosis at this time, and she told me that it was good. Despite that, this particular doctor has known Roo the longest, so I thought I would apply with her listed first. (In case you don't know, the doctor(s) listed are applied to, and ultimately make the decision.)

Make-A-Wish said "No."

Am I devastated? Goodness no. There are plenty of children more sick than mine who will be granted a wish this year.

Am I embarrassed? Nope. With more hospital stays under our belts than I can keep track of, I had every right to apply.

How do I really feel about this?  I guess it's kind of weird, but I went into this with the attitude of "If they say yes, that's great, & if they say no, that's great too, because that means she's too healthy to have a wish granted. Either way, we're blessed." And that's truly how I feel. Despite everything, I am blessed... So Very Blessed.

If you know of a child with a life-threatening condition, and would like to nominate them for a wish, click here:  www.wish.org   Good luck! :-)

Tantrums & Friends

I remember standing there, excited, nervous, so happy, yet scared... We were going home, really going home, and I told the Surgeon I had one last question.. "Wait," I said, "one more thing... If things hadn't gone the way they did.. If there hadn't been a bile leak, how long would our stay have been?"  "Oh," she said, "..about a week." and she smiled at me. For a split second I froze. If there was ever a moment for a **That's not fair!!*** tantrum, it was then, but I didn't even realize it. We were inpatient for roughly 7 weeks. This was our second stay, and if I could go back and tell the second stay me one thing... I would hug me until it hurt to breathe, and then I would tell me that everything was going to be okay.

Now my sweetie is 7 years old. It seems crazy to have a child that old. If I wanted to, I could throw a tantrum every day. Not just for my daughter, but for all the other kids who deal with diseases and  disabilities.What would it accomplish though? People always want someone to blame, someone to yell at, because it makes them feel better, but honestly, I just feel like.. this is life?? Nobody ever knows how it's going to play out, and no one is exempt from it's challenges.

One thing I have learned & cried over, is you will find out who your true friends are. The ones who visited you in the hospital (or had a really good reason if they didn't), the ones who text just to see how you're doing, and the ones who put a little bit of extra effort into dragging you out of the house when they know you're going through a tough time--those are your true friends. Sometimes Family is just a Friend in disguise.

I've also realized that being honest with myself will save me and others from a lot of disappointment. For instance, my house is dirty, I want to clean it (because I should), and I have a pile of fabric waiting to be turned into something incredible.. So I tell myself that if I hurry I will get everything shiny & sparkly and still have time to start a project... and then I feel so let down when the house is just cleanish (not sparkly) when Roo gets off the bus.. & I haven't started any projects.

So, just know that I want to be that awesome modern version of Mary Poppins, but I can't. That's not me. And Me is just learning to be honest with herself & with others about herself... and that's just something that everyone is going to have to get used to.

Lots of Love,

~Cassie

The Moment When The NP Needed A Hug

Thursday we had our first appointment with Urology at Riley Hospital for Children. Roo is seven years old now, and still has to wear a pullup everyday. In fact, she goes through several, and as much as we've tried, she still can't seem to let us know when she needs to go, or take herself there either. It would be so much easier just to blame her incontinence on having autism, but she has so many other complexities that that would be stupid. Yes, it could be her developmental delay/autism, or it could be some sort of abnormality linked to the biliary atresia (this is a great link that explains this form of liver disease in detail).. Or it could just be something totally separate, unrelated that may even have a simple fix, who knows? So that's why we were there, to try to find some answers.

She had an ultrasound of her kidneys & bladder, and then an x-ray of her entire abdominal area. She would have had a pee test too, if radiology would have had a potty hat, but they didn't.. and she's not one to pee in a cup. No complaining here. I'd be ticked if she decided cups were for peeing instead of drinking.

The first thing we're going to try is to get her on a rigid schedule. Roo is kinda sorta similar to a cocker spaniel.. meaning that most of her accidents happen when there is an emotional trigger of some sort.. But even though we take her often, and the school takes her often, we're going to try this method. We were told she needs to be taken to the bathroom at least six times a day, her feet need to be on a flat surface & it would be helpful if she was relaxed. We were also given several really cute reward charts that will hopefully work as an incentive to help her hold it until it's time.

The idea is that we are sort of reteaching her brain when it's okay to void, and that she will go often enough that she won't be able to when an emotional situation arises. 

Now here's the part that disturbed me--well, one of two things. As I'm talking to this very nice nurse practitioner, I notice that she seems to get emotional from time to time--which doesn't happen often with doctors. And then she gets to the part that was probably setting her off from the start.. She told me that Roo may never fully get out of pullups, and that it broke her heart to have to tell parents that, but she didn't want to set me up with false hope only to not have it happen. *whew* Honestly, I was relieved! I was worried that she was about to tell me that Roo had kidney disease or some other abnormality that was going to drastically effect her. She was just a nice lady, and even now, what a relief. I didn't hug her, because that would have been sort of awkward, but I felt like she needed one. What bothers me though, is why wasn't I as disturbed as she was? I guess a parent of a typical child might be devastated by that sort of news, but we already knew it was a possibility so it wasn't so bad? Or am I becoming too hardhearted? 

The second thing that disturbed me was the additional testing that we'll be considering if several months of a more frequent bathroom schedule doesn't work. One of the tests that was described, the nicer one, Roo doesn't even qualify for. She's just not mature enough to do a biofeedback test that uses some sort of sensor stickers placed on the buttocks to manipulate a game. :-)  The other one makes me want to curl up in a ball. She would have to be fully awake (sedation sedates the bladder too, apparently), and a catheter with a tiny camera and some pressure sensors would be put the urethra and another similar one up the rectum to test the pressure &  function of her bladder. There would be child life specialists in the room to try to make her comfortable, but already it seems like a lost cause. I think she'd have the meltdown of all meltdowns, and I don't blame her one bit. Just thinking about it makes me cringe. SO, if you have any positive thoughts or prayers to spare, send them our way! This reward chart really needs to work!