Sunday, November 30, 2008

In retrospect...

I started out the month tentatively committing to NaBloPoMo, while preparing for KayTar's surgery. 3 days to the big event.

I mourned the day her bottle would be left behind, a day that was then in the future and is now in the past. I love this post.

I discussed hospital preparations and posted my very favorite photo of her belly, pre-tube.

As its last act in office, the unblemished belly reminded everyone to vote.

KayTar had surgery. It was a success. Obama won the election. That was success, too.

She smiled her first post-op smile and I showed off our giant hospital room.

The new belly made its blog debut, and KayTar won her very first Barbie in the hospital craft contest.

A blog reader made KayTar a tutu and brought it to her in the hospital. We got to come home!

I worried that BubTar's GI bug would infect the post-op princess, though, luckily we escaped that fate.

KayTar made the saddest little self-portrait ever.

I did a meme, featuring BubTar.

Josh and I enjoyed our election date-bet. Mmmm, Olive Garden.

KayTar showed off her tube via video post.

I fed her while she was asleep for the first time and the heavens opens and angels sang.

I started to feel like a human being again. A happy one at that.

By the tenth day post-op, KayTar was doing wonderfully.

I rediscovered the joy of my camera.

I posted what is possibly my very favorite photo of BubTar ever.

I was completely perplexed by KayTar's feeding schedule.

I tried to give everyone a peek into what it is like to be a kiddo with a feeding disorder, or a parent of a child with a feeding disorder.

I posted more photos.

I talked a lot about puke. Classic mommyblogging.

Photo.

I missed sharing a bed with my husband. I am still missing sharing a bed with my husband.

I wrote about secret writing.

I dreamed that I gave birth to a baby. It was the kind of dream that packs a punch.

I wrote about studying. KayTar's biopsy site became infected.

I took a photo of the Throne of Blogging.

We had a happy Thanksgiving, in spite of being on ER watch.

I reposted one of my favorite posts.

I discussed not discussing the things I cannot discuss right now.

And today, I finished NaBloPoMo. WHEW!

Saturday, November 29, 2008

Oh, what a week.

I can't tell you about my week, I wish I could.

One story is not mine to tell. Though, if it were made into a TV show, I'd have a few lines...maybe make an appearance in a scene or two. This story is actually a story I've seen played out on television more than once. It's the sort of situation that makes me wonder if somehow I've slipped into a parallel universe or wandered onto a sound stage somewhere without realizing it.

The second story is mine and it will be told, but this isn't the right time. I wish I could write about it, I long to pull the thoughts from my mind and store them here for a while, but I can't. Not yet.

It has been the kind of week that leaves you bursting with thoughts, yet speechless. Constipation of the mind. The thoughts churn through my mind, the pressure building...insult added to injury. The kind of week where I find myself scrutinizing my backside in the mirror, certain that eventually I will be able to see the cosmic bullseye that must be painted back there. It has been a week to remember, that's for sure.

I wish I could offer something more than this, but my tongue is firmly tied and my mind can't quite focus on anything other than what I simply cannot say. Instead--HEY LOOK! CUTE KIDS!

Saturday morning cartoons with the 'Tars. He is such a good brother.

Friday, November 28, 2008

Back here again.

She longs to speak, but cannot bring herself to do so.

The silent minutes and hours and days roll by and she remains quiet because there is only one thing she can think of, speak of...this secret...but she will not give life or breath to it, not here, not when she is exposed and bare.

She tucks herself into bed at night, wishing sleep would come and she writes imaginary words on her ceiling and eyelids when it doesn't find her. She plucks words from the trees of her mind, turning them over in her hands, testing their weight, holding them close or discarding them, thinking of how sweet it would be to speak them aloud. The energy of it all buzzes inside of her and she rolls over, trying to quiet it and soothe it away. But sleep still dances around her like a hummingbird never quite still enough to land. The clock blinks and the tree boughs grow heavier and heavier with words ripe for harvesting.

She tries to appease herself by speaking of it in vagaries and shadows, never really saying what longs to be said, never succumbing to the birth pangs of the truth coursing through her, but instead she says something that amounts to nothing, hoping that this small offering is enough to make it through the night.

This is a repost from January, but when I sat down to write today, this post was all I could think of. This post and all of the many, many things I cannot say.


PS: Please, go visit my friend, Bennie. His son stopped breathing today and is currently in the PICU. They need all the support they can get.

Thursday, November 27, 2008

Happy Thanksgiving from the 'Tars!

Hope your day was full of smiles, too.

Wednesday, November 26, 2008

This is where the magic happens, baby.

I stole this meme from In the Fast Lane. NaBloPoMo fodder, you know, desperate times and all of that.
If you are a blogger you now have a mission. As soon as you read this, drop everything, grab your camera and take pictures of where you blog from. NO CLEANING!!! THEN, tag some lucky ducks and spread the love.




Points of interest of this virtual tour of my workspace:

* The screen, which shows In the Fast Lane's blog and the photo of her workspace. Blog within a blog! Trippy!

* Coffee mug, filled with second cup of coffee for the day.

* Blue filing drawers: top drawer labeled "Medical", middle drawer labeled "School". bottom drawer labeled "Other"...all three are almost full with KayTar business.

* Binders on top of drawers: Larger binder is just a PORTION of KayTar's medical file, smaller binder is full of therapy reports.

* Index cards, that stack is ONLY my most recent Microbiology set.

* Planner, where all details of life are stored.

I'll tag Motherbumper (in NaBloPoMo solidarity), AJ, Amy, and Slouchy.

PS: The verdict is yes, KayTar does have a staph infection at her incision site, 1 part small abscess, 1 part cellulitis. I would include a photo, but most people don't really enjoy that sort of thing. Bactrim twice a day for 7 days, plus topical Bactroban and hopefully it will clear up. As the pediatrician said, "Well, we almost escaped this unscathed." Almost.

PPS: The cellulitis area more than doubled in size since our appointment this morning. We are watchfully waiting, but if it doesn't stop expanding by 11am tomorrow or if she spikes a fever, then we have to go to the ER for IV antibiotics. Of course.

Tuesday, November 25, 2008

Stages of Studying

Stage 1: Excitement.

Ooooh, new information! I love all this new information! This is the stage where I bother Josh incessantly with copious information regarding whatever subject I am studying.

Stage 2: Mild panic.

This stage varies somewhat, but usually the reaction is something like, "6 PAGES?! HOW WILL I EVER LEARN THIS IN TIME?!" But on my most recent Microbiology exam review, I thought, "Only 1 and 1/4 pages? HOW EASY!" Then I got to the last item on the list, it said:

For each germ know the following when applicable: name of the disease; virulence factors (enzyme, toxin, antigen, fimbriae, capsule, etc); stages of the disease; reservoir/origin; tissue/organ system affected; if the germ is fastidious or not.

DUDE.

Stage 3: Competence.


This is when I make my beautiful, brightly colored index cards. For the first exam this week (Microbiology) I wrote well over 100 cards. For the second exam (A&P II) I probably had just under 100 cards. Then I read the cards frontwards and backwards until I can no longer process the words, bringing us to...

Stage 4: DESPAIR!

It goes something like this, "I'll never learn this in time! NEVER! I can't remember one more thing! I've wasted hours studying because when I take the test, I'm not going to remember anything!" Wah, wah, wah. I give up, play Guitar Hero like a petulant child, and then go to class for the exam (where I find the brain power to review the cards one last time).

Stage 5: Relief.

The test is OVER! Hooray! I always have a skip in my step after the test is over. Last night I was felt sure I'd made over a 90% and tonight, I felt pretty sure I'd made either a 98% or 100%. We'll see about that tomorrow.

Stage 6: Elation!

Like when I checked my Microbiology grade tonight and discovered I made a 97 on that exam. Take that virulence factors! Take that agammaglobulinemia! Take that staphylococcus and the 7 notecards dedicated just to you!



PS: Speaking of staphylococcus, KayTar's biopsy site is infected and so we are headed to the pediatrician tomorrow morning. Oh life, you just think you are SO entertaining, don't you?

Sunday, November 23, 2008

Once upon a time...

I wrote tonight, deeply and skillfully. The post sits with my other drafts, it is highly unlikely that it will ever be published. It is the story of a young girl and a young boy, bumbling towards ecstasy for the first time. It made me smile and laugh, those poor awkward kids, all elbows and nerves. Now, though, the warm elixir of words seems to have run dry, every drip and drop used up in the writing of that post...that secret post that will never see the light of day.

It is NaBloPoMo, though, and write and publish, I must. I could hurry and write something passable, but instead I pose a question to you...do you ever write simply for yourself? Pour yourself into something that no eyes but your own will ever see? Is it contrary to your blogging nature? Do you feel that your words are wasted if they can't be shared?

Tonight was the first time in a long time I wrote with that intention. I knew as soon as I put words on the page it would likely be for me and only me. It was oddly satisfying to write for myself, though, the pride I felt in the way I weaved the words together made me long to share them. If I had written about anything else, I'd likely have posted it in the end, but, alas, the fear of making my first sexual experience accessible via Google outweighs the desire to share my writing. We all draw the line somewhere, and if I hadn't drawn it, a certain young boy turned husband and father of two just might have.

Saturday, November 22, 2008

I haven't slept with my husband in 19 days.

KayTar used to be a great sleeper. A champion sleeper, in fact. She used to put herself to sleep in her own bed and stay there, peacefully, throughout the night. She used to be averse to cuddling at bedtime, even. During her 48 hour inpatient EEG last summer, she wanted me to lay with her as she fell asleep and it was a surprising and magnificent treat. I was allowed to cuddle with her, the heavens parted and the angels sang! She was big on personal space and routine, and sleeping any place other than her own bed or all alone were contrary to her established routines. Please note that this paragraph is largely in the past-tense. This post should be alternately titled, "How to Ruin Your Perfect Sleeper in a Few Easy Steps!"

It started months ago, just before her hospital stay this summer. We found her in her bed in the morning, covered with vomit. She hadn't cried out to notify us and must have been too tired to do so. This did not sit well with us. Dangerous. In the hospital, I witnessed this phenomenon, this still-sleeping vomit, and it bother me even more. She didn't wake up or sit up to vomit. I heard the noise and sprang into action (my clothing was an unfortunate causality of this action), but she didn't wake up for it, not for the puking, not for the cleaning, not for the bed switching. It was very, very unsettling, because as you all know, she has a habit of puking. She pukes when she has throat infections, when she has respiratory infections, when she has stomach viruses, when she has sinus infections, when she has episodes. She PUKES. Now we worry about it a bit more, puke plus an unconscious kiddo just seems like a recipe for disaster. When she is sick, she sleeps with me now (Josh goes to sleep in her room, usually). If she vomits in the middle of the night, at least one of us will be waking appropriately.

She came home from the hospital this summer, still under the weather, and was my bunk mate for a few more days. Once she moved back to her room, we had to lay with her at bedtime so she could sleep. Then she got sick again. Back to our bed. Then, back to her bed. She got sick AGAIN. Back to our bed. Then the hurricane happened. We roomed with her at the hotel, then at my parents' house for nearly two weeks. Then BubTar had to room with her, because of his broken window. Then she was sick yet again. Back to our bed. Then we finally, finally got her back into her own bed just before surgery. It was not easy, and she still ended up in our bed in the middle of the night quite a bit, but she was at least starting the night in her own bed.

Then she and I left for the hospital and that was the last time I've slept in the same bed with my husband. November 3rd. It made sense to keep her in our bed for recovery, narcotics plus three surgical sites needed nighttime supervision. It was a good decision. The problem is, well, it seems as though we will never-ever-ever get her back into her own bed. We bravely and optimistically put her to bed in her own bed one night with the promise that if she woke up, she could some to our bed. Two hours later, she was in our bed. Then, we made a second attempt. I mentioned two voluntary vomits in my previous post, the second was at the suggestion that she was going to be laying down in her own bed again that night, not ours. We stuck to our guns initially, she had to lay down in her own bed that night...but she worked VERY VERY hard at staying awake and at midnight, we brought her into our bed so we could get some sleep. She had school the next day, Josh had work. We haven't tried again yet. (We're a little afraid of the vomit, if I'm being honest...)

But I miss my husband. I miss laying in bed at night and watching TV or a movie with him. I miss arguing over what we're going to watch, for that matter, or whose turn it is to be in charge of fast forwarding the DVR. I miss rolling over next to him when I get cold in the night or when I'm spooked for no real reason. I miss putting my hand on his chest to feel his heartbeat when I can't fall asleep. I miss listening to his boring science shows as I fall asleep at night. I miss lazy back rubs and laying my head on his chest. I miss telling him the little things that pop into my head after the lights go out, "Today BubTar....", "Oh, KayTar's teacher said...", "The funniest thing happened in class tonight...". I even miss his advances, both the ones that are accepted and those that are denied. I miss being in convenient proximity to him. I miss the ease with which we could find each other in the night, his dark form always within reach.

We go in our separate directions all day, every day. He is at work, then I am at school. We brush past each other and in that moment, I pass the baton, briefing him on the day in nearly a single breath. Who needs a bath, who needs to eat, who needs medication, who has homework to do. Coworkers handing off a common file. But in the night, somehow the coworkers become friends, the friends become lovers. The demands of the day are suspended just long enough to allow us the freedom to breathe each other in deeply, to become we, who we once were, who we still are, who we one day might be. Simply, we.



That isn't to say we haven't been--AHEM--finding each other in the night...it just feels a bit like summer camp, rowing across the lake from the girls' bunk to steal moments with your lover in the night, hoping the counselors won't find you with their roaming flashlights. Except that I never went to summer camp or rowed a boat for that matter, and the counselors in the scenario are small, lightly sleeping children.

Friday, November 21, 2008

These loves of mine...

Thursday, November 20, 2008

How often do normal kids puke anyway?

I've heard there are these children in existence who have only vomited a handful of times, some are said to have lived their whole lives without vomiting. I believe them to be mythical creatures, though, it is less depressing that way. BubTar is a healthy kind of kid and even he's vomited more times than I can count on my fingers and toes. And KayTar, well, she is in a different league altogether. She puked tonight actually. Josh said, "You threw up!" She said, "No Daddy, I PUKED." Throwing up is for novices, she's a professional. She is a puker. In the past two weeks, she has puked 4 times and she's healthy at the moment.

The first puke was a negative reaction to brushing her teeth with a different toothpaste than we normally use. Something about it was highly offensive to her delicate ladylike senses. Yuck. This one was really sad because it was in the early post-op days when she was still having a lot of throat and stomach pain and it hurt quite a bit to get sick.

The second and third pukes were voluntary. Oh yes, you read that correctly, voluntary...as in, she can contract her stomach muscles in such a way that in about a minute, she can produce satisfactory results, no gagging involved. This is a brand new skill, a skill we are not all that happy about. It is employed as a tactic to win an argument. As in, "KayTar, time to go to bed!" "But I don't want to go to bed! I want to play the laptop!" "Nope, sorry, it is bedtime." Silence and concentration, stomach contractions, then PUKE! Totally controlled. Totally voluntary. Totally irritating. How do you respond to that? How do you appropriately redirect or discipline when instead of throwing a fit, your child throws up? We are in such trouble.

The fourth puke was tonight. Josh, who is really skittish about this tube feeding business and is still afraid of hooking and unhooking her, was feeding her...he got to the end, flushed the line, and then she gagged and puked. A lot. There was a lot of puke. We aren't sure why. She had a few bites of ice cream shortly before her feed, maybe she was the tiniest bit overfull? She's starting to get congested and has some sinus drainage, maybe that made her oversensitive, it usually does. Maybe she just felt gaggy all of a sudden. Regardless, I think poor Josh has been traumatized. He is probably having nightmares right now of her stomach filling up like a balloon and bursting. Anyway, I asked her about it later.

Me: KayTar, how does your stomach feel?

K: Hmmm, too stomachey.

Me: How did your stomach feel when Daddy was feeding you?

K: Too burpy and gaggy.

Me: Did you feel full?

K: Yes.

Me: What does full feel like?

K: Full feels like hungry!

Suuuuuure it does, kid. We've known that she doesn't understand the sensation of hunger for a long time, but we didn't realize she didn't understand what it means to be full either. Makes sense, though. Now we know that if we tell her to tell us when she is full, her answer isn't exactly reliable. We learn something new every day!

Wednesday, November 19, 2008

Wordless Wednesday: Skater Boy



Tuesday, November 18, 2008

And the correct answer is...

"Kyla, just calm down and go with the flow already!"

TA DA! It was an easy one to figure out after all.

Yesterday, she ate at 11am, 3pm, 8pm, and 12am. This morning she had 4 ounces at 7am and 8 ounces at 11:20am. See? We're flowing. It will take a bit for it to solidify into somewhat of a normal routine, but as long as she is getting what she needs daily, the rest doesn't matter much. But you might be wondering, "Hey! Wasn't this whole tube thing just supposed to be supplemental anyway?"

You are correct! It was supposed to be supplemental! However, I think we underestimated just HOW MUCH KayTar dislikes eating and drinking. As much relief as we feel now that we know she is getting what she needs, I think it pales in comparison to the relief KayTar feels now that she is free from the work of eating and drinking.

The bottle has gone bye-bye. We weren't sure how it was going to happen, really. We didn't have a plan at all. In fact, the day we got home from the hospital, she asked for one and we gave it to her. She took a sip, handed it back and said, "NO!" And that was the last time she had a drink from the bottle. There was one day a week or so later where she caught sight of one and DEMANDED it, but I said, "Sorry, we're done with bottles!" and handed her a cup of Pediasure instead. She got mad and cried a little, then she rubbed her blanket on her face, calmed down and never asked for one again. She did not drink the Pediasure, though. We are offering sippy cups, open cups, straw cups...but she's not really into it, regardless of what they are filled with. She has a few sips per day and that is all really. Fair enough, kiddo.

As far as food goes, well, that hasn't changed much. Over the course of the day yesterday, she had two chicken nuggets, which was BY FAR the most food she's had in the 14 days since her surgery. She takes a bite of something when the desire for a bit of flavor overrides the general disdain for putting food into her mouth, I think. She might ask for a little bag of chips, but she takes one and leaves the rest. Or she says, "Mmmm! Nuggets! I love nuggets!" but she is perfectly happy only taking a little nibble from one. I'm going to go out on a limb and say, once again, that we made the right call with the tube business.

One day maybe, one glorious day, she'll decide eating is okay...she'll learn to enjoy it on her own terms. This tube will give her that freedom, we think. It separates the terrible chore from what might become enjoyment; a little of this flavor, a smidgen of that texture, the mouthwatering sensation from a delicious aroma. Most people don't understand this, I know. Some people might even think we've done her a disservice by separating the two, how will she ever eat on her own if she doesn't HAVE TO do it? But for KayTar, who somehow lacks the internal drive, the HAVE TO isn't a motivator, it never has been...we are hoping that one day, the WANT TO will take over.

Think about yourself for a moment, why do you eat? Sure, you eat because you feel hunger...but what do you choose to eat when you feel that hunger? Foods you ENJOY. If it was lunchtime and someone plopped some boiled bull testicles down in front of you, would you chow down or would you politely decline? This is how KayTar feels about eating, usually. We might as well be offering boiled testicles, rather than chicken and fries. But maybe, if you were really hungry, STARVING, you'd go ahead and eat...just to survive. But KayTar, she doesn't seem to feel that hunger, that starvation. The only way we knew she was having hypoglycemic spells was the dizziness. She never gave any other the indication. By the time my blood sugar dips so low that I'm dizzy, I am ravenous....not KayTar, though. The thought of food, getting it on her hands, letting it touch her lips, her tongue, her teeth...the thought of chewing and swallowing...it literally turns her stomach. She used to gag and vomit during almost every meal. We've come a long way from that, she is more assertive, she protects herself better, and she has even started to enjoy some things over time...but at the heart of it, she still feels that way about eating in general. It is an experience she prefers to avoid. And so our hope is this, that one day she might discover the joy of food, of eating...and after that, the nutrition will follow. In the meantime, though, we will continue to give her what we know she needs and we have no doubts that we've made the best decision possible for her.

PS: Sometimes when I discuss this stuff, I feel like I'm speaking a foreign language. Eating, the enjoyment and necessity of it, is so natural and ingrained for most of us that understanding how KayTar feels about all of it doesn't quite compute. We have industries built around humans and their great love of food, vast and varied cuisines, gastronomy even...our world revolves around mealtime. We have lunch breaks, family dinners. We go out to eat with others for companionship, for business. We invite people to our homes and cook for them, we have barbecues in the backyard. Holidays revolve around special meals, sitting around a large table and eating together. Food is a pillar in our culture. It is so contrary to think there are adults or children who don't adhere to these norms. When I talk about this, people often think more along the lines of picky preschooler asserting her independence, which makes the whole tube thing seem kind of insane. This is not that. I wrote this in hopes that is will make it all a little less difficult to understand from the outside.

Feeding disorders: When every meal is a scene from Fear Factor, but you never win $50,000.


Monday, November 17, 2008

Word Problem

Disclaimer: This is (mostly) rhetorical...unless you have some sort of epiphany, then by all means, bring it on!

KayTar needs to eat four times per day and intake a total of 32 ounces of Pediasure each day*. Her feeds should be as equally spaced as possible, to avoid overfilling or underfilling. While KayTar can eat while sleeping, either in the morning or at night, she cannot eat between the hours of 12-3pm or 5:30-9pm on Monday-Friday. Furthermore, she cannot eat between the hours of 7:30-9am on Tuesdays. At what times should KayTar eat?

Failed solutions to this problem:

The Saturday/Sunday solution of 10am, 2pm, 6pm, 10pm

9am, 1pm, 5pm, 9pm

7am, 11am, 3pm, 7pm

10am, 3pm, 7pm, 12am

8am, 12pm, 4pm, 8pm

And so on...

*She was having dizzy spells last week. Hello there hypoglycemia, nice to meet you! While she is used to drinking only 3 Pediasures per day, on good days, she was also eating 1-2 baby food jars and a serving of chips (another 200+ calories), so we had to add a fourth feed to the day for her.


Last week during on of the dizzy spells, she told me, "I'm flying away." This photo reminded me of that. (click to enlarge)

Sunday, November 16, 2008

Freckle face


(click to enlarge)

Saturday, November 15, 2008

Launch/Landing


Friday, November 14, 2008

Post-op Day 10.

KayTar is healing up wonderfully!

She is off the narcotics.

Her g-button site is looking great. No redness or inflammation.

She isn't experiencing any tenderness with her feeds.

Her biopsy bandage came off today and it is healing nicely. She's hardcore now, what with the belly piercing and wicked leg scar.

Chances are, she will be back in school next week!

She still has a touch of the death breath from the T&A surgery. It is a sad day when you think your kiddo has a dirty diaper, but alas, you realize it is just the smell of her not-so-sweet morning breath. Blech!

She still isn't taking much of anything by mouth, a few sips of fluid per day and today she had a Pringle or two, but she's still getting everything she needs.

All in all, the recovery has been so much easier than I feared. Outside of a few heartbreaking moments like waking up post-op and saying, "I'm broken." or drawing that crying self-portrait, we've both fared well. She's handled it all in typical KayTar-fashion, with smiles and giggles all along the way. I'm glad she's on the other side of it all and life can start to get back to normal around here...or our approximation of normal, at least, whatever that is!

Thursday, November 13, 2008

Yesterday,

I cleaned the living room, the bathroom, the kids' rooms.

I did laundry.

I played Potato Head, trains, dollhouse.

I read books.

I studied.

I emailed a few people just to say hello.

These things sound ordinary, but they aren't. These are things I haven't felt like doing in months, it seems. I've been doing them, half-heartedly, because life demands it be done. Kids must be fed, clothed, read to, played with. House must be tidied, cleaned. Laundry must be washed. Studying must be done, even if only in a OH-MY-GOD-I'VE-PUT-THIS-OFF-TOO-LONG-AND-MUST-CRAM-NOW sort of way. Emails have to be sent, replied to. Life has to happen, whether you feel up to it or not.

But yesterday, I woke up and instead of plugging myself into the computer straightaway, I cleaned up. I felt like getting things done. I felt like being social. I felt like playing. I felt GOOD. I didn't realize that I haven't felt that way in a long while, until I felt it again. I've had this bezoar in my gut for months now; stress, anxiety, fear, grief...compressed and twisted and turned into something almost unrecognizable, something I didn't want to recognize, really.

I've distracted myself, focused on things that don't matter. I've avoided talking to people for fear of having to acknowledge my emotions or see them mirrored in someone else. Of course, you can't avoid everyone all the time...when forced to update someone or fill them in on things, I limited myself to very factual and flippant statements, "Yeah, she's getting a g-button installed, you know, like a tiny gas pump...fill 'er up and go." I didn't want to see concern reflected in their faces. I didn't want to process my own concern, much less soothe someone else's. I couldn't study, because I simply couldn't focus. I've used this space as a pressure release valve, I've let off exactly enough emotion to keep it from exploding all over the place.

I don't know exactly how long it has been happening, I wasn't even aware of any of it until yesterday. My heart was war torn, ravaged by the years filled with recurrent battles of nutrition and hydration, broken by the perceived defeat of surrender. The reality of this surgery has so far surpassed my hopes while simultaneously nullifying so many fears that my head has finally cleared. Yesterday, I felt genuinely good for no reason at all, except that the hardened lump of fears and anxieties that has been fossilizing in my belly for such a long time was suddenly nowhere to be found.

Wednesday, November 12, 2008

The Easy Button

I did something amazing last night.

I fed KayTar and gave her medications, after she was asleep.

Yes, that's right. My child ate and took medication while she was sleeping.

It was amazing.

She hit the wall yesterday afternoon. Her body was pained and exhausted and it culminated in a mega-breakdown. She was a sobbing miserable mess, so I took her to the bed and cuddled with her for a while. She curled into me, great big fetus style, her little knees pushing against my stomach and her head nuzzled in my chest, a ball of preschooler. She stayed there, still and quiet for a very long time. My poor little girl. I was almost certain I would be missing class again, staying home to lend her the comfort she so obviously needed in that moment, but she perked up in the nick of time. She told me I could go to school, Daddy would take care of her. She still wasn't her best and I decided to skip the lab portion of class, so I could get back to her quickly.

I got home around 7:30 and she was already asleep. Her little body was just worn out. Healing is hard work. We had a small problem, though, she needed her nightly dose of antibiotics and she hadn't "eaten" or had pain medication since around 3pm. Though we were concerned about waking her accidentally, we didn't want her to go without her medicine. We decided to give it a shot, at least try to give her the medications.

I gathered the supplies and sneaked in the bedroom.

I opened her port. Froze. Looked at her, motionless.

I hooked up the bolus tube. Froze. Looked at her. Still motionless.

I ran in her medications. Lortab, Amoxicillin, Miralax and water. She slept.

I shout-whispered to Josh, "Bring me a Pediasure!"

I ran in 2 ounces. She slept.

I waited a bit.

I ran in 2 ounces. She slept.

I flushed the line.

I disconnected the line. Froze. Watched her. Still sleeping.

I closed her port.

I zipped her footsie pajamas.

I kissed her head.

I sneaked back out.

Medication and nutrition in her sleep. Wow.

We discussed these things before the surgery. We made the decision to get the button for these very reasons; the ability to feed her when she felt too poorly to feed herself, the ability to keep her hydrated, the ability to be able to give her nutrition and fluids and medication while she slept...we discussed all of it. Though, somehow putting it into practice feels like an unexpected gift, each and every time. It had only been a week and already, it has done so much for her and for us.

[Would have been] Wordless Wednesday: The Blue Plate Special
It's what for breakfast...and lunch...and dinner...and midnight snack.

Tuesday, November 11, 2008

HerTube

video

Monday, November 10, 2008

News on the KayTar front:



 Feeds are getting easier, hardly any associated discomfort, though she seems to be feeling worse a bit in general. She still isn't taking anything by mouth, but is asking for tube feeds. "Mommy, will you feed me in my tummy?" She will specify where she wants to eat, too, either the bed or her little chair.

Last night she had trouble with snoring and I thought the adenoid swelling probably peaked, but this morning she woke up gagging, so I think that perhaps TODAY the swelling has increased more so to the point of making her feel nauseated. She also doesn't want to get out of bed this morning, which makes me think she is feeling quite poorly in general. I'm hoping she will be over the hump soon, though.

She's really doing well, even if these little updates don't always sound that way. We're happy to be home, she's mostly comfortable, and she's been up and around playing quite a bit. She laughs and smiles, and yesterday I caught her showing off her button to her brother, "This is my belly button. I can eat with my tummy. The doctor gave it to me. I like Dr. M, he has chili peppers on his hat." She's getting there, slowly but surely...just like she always does.

Saturday, November 08, 2008

Saddest self-portrait ever.



KayTar drew that today. She said, "That's me."

I pointed at the lines at the bottom of her eyes and said, "What are those?"

"Tears." she said, "I'm crying because I don't feel good."

Did you hear that sound? Yes, it was the sound of my heart breaking.

My poor sweet girl, creating her own little preschool pain scale.



It isn't an exact match, but I suspect that it might be a Number 10 putting on its very bravest face.

Friday, November 07, 2008

More of the same...

Last night went well, KayTar and I enjoyed a lovely full night of sleep in my big comfy bed. Josh will be bunking in KayTar's flowery twin bed for the next little while, but he slept fine, except for the recurrent dreams of butterflies and fairies. She woke me up a few times, I'd hear her say, "Mom!" or "Dad!" and open my eyes to find her sitting upright in bed with her eyes completely closed. She'd say something like "Where am I? I can't see ANYFING!" And I'd reach over and say, "Remember? We're home now, let's lay down and sleep." Oh, the fun of preschoolers on narcotics.

This morning, BubTar went to school and was promptly returned home to me. Without giving too much away, he is having serious intestinal troubles that began as a bit of a SURPRISE for him. I'm a little bit freaked out that he's brought home some GI virus that he will see fit to share with the rest of us, especially KayTar. Can you imagine her getting the pukes with the state of her stomach and throat? Let's not think too much about that. Needless to say, quarantine is back in swing, sponsored by Lysol and Purell.

The perkiness of last night has worn off, I think it was a Lortab buzz combined with the rush of being pain-free for the first time in hours. She's in good spirits, but much more mellow than she was last night. She's tolerating her full feeds and every time it gets a little less painful (her site is still pretty tender). Last night she got upset when I was hooking her up and she jerked the bolus tube off. YEEOW! She doesn't seem to want to repeat that experience and is less apt to grab at things, even if she is still a little uncomfortable. As long as I give her hands a little squeeze after every step, ("Okay, I'm going to open your valve now" Squeeze hand. "I'm going to hook in the tube now." Squeeze hand.") she is mostly agreeable. During her pseudo-lunch, she even wanted to help hold the big bolus syringe. She is also quite fond of using the bolus tube as a microphone to announce important things like, "I like flowers and hearts!". She whimpers a little when I tell her it time to eat, because of the tenderness, but it will get easier and easier as it heals. She's adjusting really well, all things considered.

Thursday, November 06, 2008

We're home.

Oh, yes we are.

Today was a longish sort of day and I'm feeling that rush of exhaustion that stems from finally being able to relax a little.

This morning she had her first Pediasure feed via the tube. Most of you already know that she calls it "chocolate milk". Well, when I asked her how it felt going into her tummy she said, "Too chocolatey." She makes me laugh.

A lurky local blog reader (Hi there!) emailed me this morning to see if she could bring KayTar a little get well gift. She left it at the nurses station and they delivered it to KayTar. She was THRILLED! It was such a thoughtful and sweet gesture! I don't know if she wants me to give her name or not, so I won't...but everyone tell her how KIND she is, because I'm sure she'll see this! Check it out...





A homemade tutu and wand! She was in heaven. She wore it all day long. She spent most of the day out of her bed. We went on walks around the floor, she played in our mega-room, and we even took a wagon ride to the cafeteria so I could eat lunch. The tutu got rave reviews all around. She also did a craft today, see her pretty bracelet?



This afternoon, the nurses trained me on tube usage and I fed her for the first time. It was still a little painful, but not too bad. After every 2 ounces, I asked her if her tummy was full or if she wanted more. After 2 ounces, she wanted more. After 4 ounces, she wanted more. After 6 ounces, her eyes closed and she was snoring away. A nice full bellied nap. After that, we were free to go! By the time we got home she was hurting pretty badly, because she hadn't had pain medication since morning. She was running a little fever and was generally miserable. Once we got her codeine laced tylenol into her little body and chased it with some Pediasure, she perked up, though. She's currently wandering around the living room, watching Blue's Clues in her fairy pajamas with her tutu on over them. Perky as ever. It is a beautiful thing.



Today she has probably had 5 sips of fluid total, but she's gotten almost all of her fluid, calories, and medications for the day already. By the time she goes to sleep tonight, she will have had everything she needs. And that, too, is a beautiful thing.

The new belly.



She had her first feeds today, clear fluids only. The first one was fairly traumatic, the drainage tube had fused to her tummy and removing it was very unpleasant. Once that was over, hooking in the feeding tube was not as problem and she didn't mind the feeds at all. Though, she looks less than thrilled in the photo...



My parents came to visit, which mostly consisted of sitting and staring at her while she stared at her Tinkerbell movie. After that crazy exhaustion inducing exercise, she took a really long nap and when she woke up, she SAT UP! Then I asked if she wanted to stand, she did! Then I asked if she wanted to take a walk in the hall and SHE DID! We looped the floor twice before she crumpled back into her bed. She still hasn't moved much. That is hard work for a tired, pained little body. After crawling back in bed, she watched more Tinkerbell. Surprise.



After Tinkerbell time, Josh and BubTar came to visit. BubTar and I went to dinner together and Josh and KayTar bonded...by watching Tinkerbell. When we got back from dinner, the radio show people were there dropping of the goodies for the nightly craft contest, a blank watch and stickers. She decorated hers with stars and fish stickers, with a little help from her brother.



They also dropped off a letter from our friends, Kristin, Easton, and Dalton! I had her pose with it, but she couldn't quite smile...



The boys stayed long enough for me to shower (THANK GOD FOR SHOWERS) and then they went on their merry way. While I was in the shower, though, KayTar broke her Tinkerbell DVD. I fear for our survival without it. EEEK! My sister might have mercy on me and bring us a replacement tomorrow. I think "Watch Tinkerbell" is actually written her post-op orders...or at least it should be.

Later on, the radio people came back to award KayTar her prize for winning the craft contest, a Barbie. Her very first. She was thrilled and has been brushing its hair for about an hour now. Simple joys. Consequently, she won the art contest last year when she was here for her EEG, too. I wonder if they stack the odds for adorable little Tars.



Tomorrow, she'll start Pediasure feeds in her tube. She's only had three sips of fluid since 9:30pm on November 3rd and she still doesn't want anything to do with eating or drinking orally...and for the first time in her little life, I DON'T CARE! Honestly! She can be fully hydrated and nourished whether she feels up to drinking or not. A miracle in the form of a little plastic button. Amazing.

[Insert long, heartfelt sigh of relief]

Wednesday, November 05, 2008

She smiled.

This morning started infinitely better than yesterday. She's still far from herself, but I did get one tiny smile. She woke up at about 5am, while it was still dark out, and just fell asleep a few minutes ago (about 8:30am). She watched Tinkerbell and her pain seemed to be managed, though not absent.

Her doctors came by to visit, all at the same time strangely enough. The plan is to continue with IV morphine and start clear fluids today, start oral/g-button pain meds and solids/Pediasure tomorrow, and then go home if all goes to plan. It sounds lovely to me, as I slept for probably an hour and a half last night, between the darling baby (who is amazingly adorable and friendly) next door being awake and QUITE unhappy most of the night, and vitals checks, and KayTar's intermittent moaning. It won't be an easy recovery, even at home...but the promise of home in a couple days sounds great.

After waiting 7 hours for a room? We ended up with the penthouse suite. Check it out!







And, of course, the girl.



A couple of her owies. (I'll spare you the g-button, as it is still draining and not really ready for its close up. Also, if I had smell-o-vision, I'd share the DELIGHTFUL smell of post T&A breath...it is disgustingly impressive. Be thankful I have no smell-o-vision.)



Now, I'm optimistically going to attempt a nap. Fat chance as the ambulances are in full force and the darling baby next door seems to be agitated again, but a girl can (day)dream, can't she?

Tuesday, November 04, 2008

It was a BIG day.





She came through surgery wonderfully.

We spent 7 hours in recovery because they had no open rooms.

She is so very miserable and it is breaking my heart. They are giving her morphine, but when she wakes up she's in a lot of pain. The saddest part is that she can't even cry, because it hurts so much worse. She told me, "I'm broken." As is my heart, darling, as is my heart.

Here's to it being done. Hopefully tomorrow she'll start feeling better.

Thanks everyone. Thanks for carrying us through.

Super Tuesday




I'll update via Twitter when she is out of surgery and I'll try and post here as soon as I get a chance.

Monday, November 03, 2008

Preparations

A couple weeks ago, my friend Cori sent KayTar a little package for her upcoming hospital trip. In it, was a Groovy Girl with blond curly hair and a spare outfit (and surf board!). KayTar was thrilled with the doll, whom she promptly named "Luke", and agreed when I told her we couldn't open the spare clothes until we were at the hospital. This was how I told her "Surprise! You're going back to the hospital!" It turned out to be a good way to break the less than stellar news, because after school that day (and subsequent days) she would say, "Can we go to the hospital NOW?" I should be in PR, I think. If you can sell a hospital trip to a three year old, you can sell just about anything.

Here she is opening the gift and reading the accompanying letter (she has trouble following the lines sometimes, but did NOT want my finger pointing assistance):


****

My mom has been making KayTar her own little stylish hospital gowns. We've picked up princess fabric and fairy fabric and all manner of fabrics that ooze the girliness my girl is so drawn to. She is quite thrilled with her new gowns and might be even more excited that they are called gowns, "Just like a princess!".



(just in case you ever need a tiny hospital gown pattern, there is a free one HERE. though, we discovered that the neck hole was a bit too big and needed adjusting and we opted to go with non-velcro sleeves.)

****

KayTar has informed me on multiple occasions that she is NOT going to the Girl Hospital, but rather the Boy Hospital. This is the sort of thing that happens at the Boy Hospital:



Yes, she would like to have her surgery at Sacred Heart.

****

Today I decided we might be overselling this whole hospital thing; new toys, new clothes, the cast of Scrubs...so this morning we sat down and talked about things a bit more.

We're going to the regular old hospital, with the boats out front and the stars in the elevator. She said, "Oh! I love that hospital! I love the boats and the stars, and every-fing."

She's going to get another Straw in her hand (IV). She looked a little less than thrilled, but she said, "Can the bandage be PINK? I wike pink."

The doctors are going to do something to her throat while she is sleeping to keep the frogs out, a frog trap if you will. It will make her throat hurt, but hopefully it will be the last sore throat for a long time. When she gets throat infections, she always says, "I have a frog in my throat." so that was the only way I could think to explain it to her in an understandable way. No, there are neither frogs nor traps involved, but if frogs are painful throat infections to her, then no more tonsils should be the equivalent of no more frogs.

I pulled up photos of g-buttons on the Internet, to show her what an extra belly button looks like and how it works, kind of like the Straw in her hand, but it puts the food right in her belly. She laughed and said, "Can I say, 'yum, yum, yum'?".

Then I told her she'd be getting stitches in her leg like her brother did this summer. She isn't too keen on this part, because she says stitches are "Too spidery." But I told her we can keep them covered up mostly.

****

Her surgery is a noon tomorrow. No Pediasure or food after midnight tonight, no clear fluids after 8:30 tomorrow morning. We have to be at the hospital at 10am.

Here we go!

Belly.

Sunday, November 02, 2008

Ode to the Bottle

Tonight, I laid next to KayTar as she fell asleep, watching her every move, feeling my heart swell in my chest. She pulled her blankey to her face and settled in, drawing long, slow drinks from her beloved bottle of "chocolate milk" which is neither chocolate nor milk, but vanilla and Pediasure. Her eyes fluttered and she grew still, her breathing slowed and her drinks grew shorter, little grunting breaths interspersed in the sounds of suckling. Her hand started to slip as she grew sleepier, the bottle dipped and she drew in air. I fought the urge to reach over and right it again as I did in her infancy; she's a big girl now bottle or no. She lifted it higher for a few seconds and it dropped again, up and down it went until she grew too sleepy to bother. The nipple slipped from her mouth and she continued to nurse from the phantom bottle for a few more seconds before sighing and groping for my hand. She curled my index finger in to her little fist and released one last contented sigh.

KayTar and I did not have a successful nursing relationship. We tried, both of us, but it wasn't in the cards. I pumped for her for the first month, because she just could never seem to latch on. Now I know why, of course, low oral tone, but then I didn't have any idea. I offered periodically and one glorious day she finally latched on. I remember calling Josh immediately, pleased as punch. We could do this after all! Alas, although we won that battle, we ultimately lost the war. We had limited success with the latching, but every nursing session was an exercise in futility, she struggled and cried...nursing just was not as easy as drinking from a bottle and so about the time she was four months old, I let her wean herself as she had been desperately trying to do all along.

The bottle was no picnic either. BubTar was strictly an Avent infant, so before she was born, we stocked up, sterilized, we had it all. We had done the trial and error and we knew what worked. And then, we offered her one of our shiny new bottles and she couldn't drink from them. The nipple was too big or too firm or too something. She screamed and gave up. We used the ready made formula and nipples they gave us at the hospital, but even those gave her trouble. We bought pack after pack of bottles trying to find a solution. We tried different formulas. We tried it all. Feeding was a struggle from the day she was born. We thought the problem was gas or reflux or maybe an allergy, frankly, we had no idea. We just wanted to fix it. I don't know how or when we discovered it, all those months are such a painful, confusing blur for me, but after finding a few that were deemed only acceptable, we finally found a winner. The cheapest of the cheap, Parent's Choice bottle from Walmart, non-bumpy nipple, slow flow only, single-pinhole.

The bottle has been a sore spot for me at times. What kind of parent allows their three and a half year old to have a bedtime bottle? What kind of three and a half year old not only has a nightly bottle, but a thrice daily bottle? The kind who would waste away to nothing without it, that's what kind...but there are times that the logic isn't much of a consolation. I wrote this about a year and a half ago:
Today BubTar's school room mother asked how old KayTar was while helping BubTar from his booster seat.

She said, "Oooh, baby girl is getting big! How old is she now?"

"She is two." I replied, while smiling.

"It's time to get rid of that bottle, Mama." She stated, as she closed the car door.

And I pulled away from the curb feeling very much like I had been slapped across the face. Hot, wet tears poured down my cheeks and I didn't know why. I was angry and shaking, and the tears kept coming.

I was so wounded by her words, I sent her a letter in response. In it, I said this:

KayTar(...) has a feeding disorder, which prevents her from drinking from a cup or straw. She is still on purees, so most of her nutrition comes from her bottle. Without it she would have a feeding tube.

Here we are, THERE, the feeding tube right around the bend and all I feel for that bottle anymore is gratefulness. It nourished my child when my body could not. When her weight had fallen down, down, down the charts it held the Pediasure that allowed her to climb back up the charts. It provided her calories, enticed her with its comfort, ensuring at least one of her feeding experiences positive. It has soothed her through countless doctor's visits and tests. Dammit, the thing is practically a member of the family now. Next week, though, an era will end...the era in which bottles are necessary to life. Finally, after all of this time, we can wean her from the bottle without risking her nutritional stability. Although the transition won't be easy, I'm sure, it is now at least possible. Is it strange that it gives me little heart pangs? My sweet, sweet baby girl and her well loved bottle, going their separate ways. The final vestiges of babyhood finally falling away behind her.



Do you think it would be too much to have it bronzed?

Saturday, November 01, 2008

NaBloPoMo?

Today is the first day of November, also known as National Blog Posting Month. Last year I played along and found it to be kind of freeing, I'm sure the quality of my writing took a bit of a dive, but forcing myself to sit and write on a daily basis about something, anything, without much thought to the actual content was challenging and refreshing. I had to write, so I wrote about things that might have normally slipped through the blogging cracks. Because I am psychotic, I think I'm going to give it another go this year. Yes, KayTar is having surgery next week. Yes, we'll be in the hospital. Yes, I'm in classes that are rather demanding of my time. Yes, I've been feeling a little tongue tied lately. But I'm going to give it a go.

KayTar has been home from school all week in an attempt to avoid germs that might make her miss her surgery next week. She didn't trick or treat last night or go to the festival, because all the candy in the world was not worth also bringing home the germs of a thousand snot-faced kids. She wore her costume all day and we rented a Dora movie and had a relaxing evening at home. The boys went and did the festival and trick or treating thing, stripping and scrubbing when they got back home, just like BubTar has done after school each day. Our house is such WILD AND CRAZY FUN!

In spite of all the germ precautions we've been employing, KayTar has been nursing a cough for a few days. It started as a little thing at Barely Noticeable Level, then it escalated to Need Her Inhaler Every 4 Hours Level, this morning it reached the bonus level, Woke Up To The Sound of Cough, Gag, Vomit Level. She doesn't seem to be sick, though. She isn't snotty or feverish, her energy level isn't down. Her airways are just irritated and overreactive, I suppose. I hope. The alternative is less than appealing. I'd rather not make peace with this surgery, make arrangements with my professors, make arrangements for BubTar, just to have it all canceled and replayed in a week or a month. The handy weather website tells me that the pollen levels are very high today and the air quality is marked as unhealthy for sensitive groups. So the party line remains, KayTar is not sick, just having a spot of trouble with her asthma this week...coupled with fervent knocking on wood. FERVENT. KNOCKING. Surgery is in three days. We can make it three more days. (knock, knock, knock)



In other words, welcome to NaBloPoMo, the Land of Kyla's Unbridled Neuroses.