Tip-toe through the fester field

I try to stay away from angry blogging. I don't want this to be a source of pain to someone else..  Another thing to add to their "Field of Fester," where they go to wallow in it's septic mud--a mixture of self-pity, paranoia, anger, and being a know-it-all.

Beware the septic mud! 

If you happen to get too close to a "Fester-er" , you must tread gently or else you'll step on a landmine that will splatter you with crap like the pus of a giant pimple. Usually, I try to ignore it, but sometimes I have to get  it off my chest before I start to fester myself. By the way,....

I Miss AKA Super Mommy.

The longer I blog, the more I miss it. The main people that I started blogging afresh for, don't even read it. And I thought that I'd downloaded copies of blog entries that I was hoping to publish under my new name... only to find out I actually didn't. THAT was a major bummer. Anyway, back to starting afresh without anonymity. In some ways, it can be really refreshing to know that I'm accountable for everything I write and I can share it with anyone without having to worry. In another way, it's horrible, because even the best of friends will make you mad sometimes... and... even though this is the best place to express those feelings, sometimes you feel you have to--like when your brother or sister has a big autism no-no moment, or someone you're friends with goes all "if this was my kid" on you,...or when someone close to you feels that you're "sparing the rod" & it's "spoiling the child." In those moments, autism parents, or just special needs parents in general, feel so alone. And it's so unsettling. & It hurts. But when someone either gets up enough nerve (or has enough anger), that they just let all those feelings loose in a public place--facebook page, blog, support group, whatever--and you see that you aren't the only one who's been treated that way.. (OR, on a lighter note, your child isn't the only one who does that:) It's a mixture of relief, sadness, anger, and/or giggles & joy that forms a bittersweet bond. You've got their back, and you know that they've got your's. And suddenly, it seems that you have two groups of friends--"them" & "us."

Roo's Birth Story: Part II

Picking up from where I left off...

The moment when I felt my baby being taken from my belly, it was like the world paused. After the longest 2 seconds of my life, she let out a loud wail. I was able to breathe again. She was wiped down & laid on my chest, & Terry and I both had tears streaming down our faces. I was so thankful for this child, so thankful that she was alive, and.. to be honest..  so thankful that this was over with. I was ready to move on.

A minute later she was taken to another room and Terry followed. A couple of nurses were left with me and they started to clean me up. They kept talking to me, telling me how much fluid there was, LOTS of suctioning was going on. Then there was some silence and I heard one of them say, "What's that??" I never did hear the reply, but once again there was more suctioning. My OB doctor came back in to stitch me up and then left again. I was finally switched back over to a bed by the nurses, and wheeled back to my room. Halfway there my OB doctor rushed up to the nurses and said, "Where's the placenta?!" They told her that they already threw it away, and just shrugged like it was normal procedure even though the doctor seemed upset.

People came to visit me from time to time. Nobody was talking much about my baby. Some were better at putting on a happy face than others, but I could sense something was wrong. My OR nurse came back often to see if I had feeling back in my toes yet, because I couldn't go to the nursery until then. My doctor was very sweet. She checked on me, asked me how I was, and even brought me some sprite. Her bedside manners where wonderful.

Down the hall, through a  pair of thick sound proof doors, a different scene was playing out. My husband was angry. People who described him, did it with wide eyes. My poor Roo.. her blood sugar was 16, I think... dangerously low.. and she was being poked over and over again by incompetent nurses who didn't know how to start a newborn IV. Even after other nurses told them a team from Riley was coming, they continued on. To this day, I would like to have some words with them, whoever they are. 

Everybody knew that Roo was going to be transferred to a Children's Hospital before I did. Nobody wanted to tell me. Finally, the pediatrician on-call came to visit. She told me that they thought she had Trisomy 18 & that she was being life-lined to Riley Hospital for Children. I started to cry, and her reaction.."Oh, Mom is crying.. *tsk, tsk, tsk*" and then gave me a pitiful smile & left the room. Her lack of compassion, emotional wall, or whatever it was that she put up, sealed the deal that she would never be my daughter's pediatrician. 

I was crying, my mom was crying.. and she hugged me. All I could say was that I didn't understand, all the tests came back normal. With this, I must backpedal a little bit and tell you about my pregnancy. Besides being HUGE from all the extra fluid, I had extremely mild gestational diabetes. Literally, I was 1 point over the limit. I had to check my blood sugar for a week and then it was determined that it could be managed with diet and exercise. The dietitian told me that if I happened to slip up, go for a walk, and to take a walk daily. I was good. I took my prenatal vitamins till the end. Little snacks that I packed around with me where things like.. celery sticks. Bleh. Anyway, when I had the blood work done in which they checked for different genetic markers, the results came back that Roo was 1 in 10 for Trisomy 18. We met with geneticists, had ultrasound after ultrasound during my pregnancy to make sure her organs where forming correctly, and that she was responsive.. At one point they wanted to do an amniocentesis. Looking back, I wish I would have agreed, but I didn't know what was ahead. I didn't know she would grow into the term  "medically unique". And I still don't know if it would have made any difference in the long run. At the time, my thoughts were that none of the additional testing had come back showing any evidence that something was wrong, and the procedure didn't seem worth the risk. 

Once again, I have to give thanks for the nurse who made sure I held my baby before the Riley team arrived. She had an oral feeding tube in place & she kept playing with it with her tongue. My little redhead was still fussing up a storm when they handed her to me, and then she just stopped and looked at me with those big eyes. She already knew who I was.. <3 

If you've never seen a lifeline team, it can be surreal. The team arrived dressed in dark blue jumpsuits, with red stripes down the side, wheeling in an incubator. I kissed my princess goodbye and handed her over. 

Later, I was told by a friend that they started an IV with 1 stick. That's right, one stick. 

Her dad left me early the next morning, and then my mom stayed with me at the hospital. I was terrified to stay alone. I wouldn't see my little redhead for 4 days. The daytime nurse in charge of my care was horrible. I spent another night in the hospital and then was discharged. I spent another night at my Mom's house, and then packed my stuff up and headed to the children's hospital. We had a room at the Ronald McDonald House for 3 weeks. They. Are. Amazing.

The next chapter will be from my husband's point of view. Sorry for my long absentee. February was especially dreary. ;-) 

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.;)