Saturday, January 30, 2010

Dog! Dog! (Daw! Daw!)

We went to Office Depot today. Bridgette and I were looking at greeting cards and found one with a chihuahua cut-out. Despite the fact that it was bearing its teeth in the photo, Bridgette said, "wooh, wooh!" then put the card to her face and licked it, bottom to top. We... um... put it back for someone else to buy.

Bridgette's speech is currently monosyllabic gutteral noise.

For example:

1) She knows "ball" -- bah.
2) She knows "blue ball" -- buh bah.
3) She knows "balloon" -- baah.
4) She knows "stuck" -- tuk
5) She knows "bird" -- duk (all birds are currently ducks).
6) She knows "quack" -- "?" (I don't know how to write that; she really does sound like a duck).
7) She knows "mom" -- ma (which also means hold me now, whoever you are).
8) She knows "dad" -- da.
9) And she knows "dog" -- daw daw (always twice).

She says four words that don't fit the cut-out and actually use long-vowels:

1) She knows "poop" -- poooo-poooo (very musical - like a train).
2) She knows "woof" -- wooh wooh (always twice; sounds a lot like a dog actually).
2) She knows "ice" -- "ice" (comes out equally often as i-sh or ass).
3) And she knows "no" -- "no" or "oh no!"

Of course, she's understanding a great deal more than she's saying, and I'm sure she's on the verge of spouting lots more words. Scratch that. She's been unpredictable before. But I think it's likely. Language is coming.

Fascinating Food

Since babs' recent recovery from enterocolitis, we've noticed that good digestion days are really good. We're letting her eat more and more dairy with increasing success... we think.

She's still having intestinal trouble off and on, but it's hard to trace. Dairy used to be an obvious culprit, making her really, really sick exactly three hours after ingestion. She'd then spend the next two hours violently ridding her body of the dairy and everything else she had eaten and drunk that day. Expulsion was followed-up by the deep sleep of the ill. That doesn't happen anymore, so her random, episodic digestion issues are difficult to peg.

So for the time being, and until we can prove it's a health hazard, she enjoys gorging on yogurt, cheese, and ice-cream. (Though perhaps I should clarify that her version of "gorging" is, at most, 2 ounces of yogurt.)

She's also enjoying eating other foods made with smaller amounts of dairy... like, practically everything you can think of because almost all food has milk in the batter or butter in the dough or whey in the ingredient list or cheese powder in the flavoring, etc. Right now, battered chicken fingers have a major Bri-endorsed thumbs-up.

With the addition of these foods, comes a lot of textural experimentation. Finger painting, painting with other food or utensils, table licking, and general squishing to virtual non-existence (especially cheese) are at the top of the list.

I came around the kitchen corner early this week to find Uncle Jon feeding Bridgette a snack.

I wouldn't let her escape until I got a close-up of her cute yogurt face. She didn't seem to mind too much.

But the food escapades don't stop with dairy.

Today we spent the morning running errands as a family. We stopped for lunch at Rumbi Grill, and Bridgette excitedly bit into some small cubed chicken pieces, then choked.

Choking is still intermittently problematic. Though I think I've figured out why? (She may have inherited it from me. I've recently noticed I don't chew my food either. I pop it in my mouth and swallow. More or less.)

The problem is that when Bridgette chokes, she really chokes, and it scares her. After the chicken was swept from the back of her throat, a trick I've learned to do efficiently, she wouldn't eat anything else. We tempted her with chicken, rice, veggies, ice, teriyaki sauce, and fries.

And what do you think won the day? A lemon.

But not just sucking on a lemon. She ate the whole lemon wedge, rind and all. Mmm...

Tuesday, January 26, 2010

Mothering Baby B: Six Notes from the Field

Sub-note: Notes 1-5 are short and anecdotal. Note 6 is personal and lengthy. Feel free to skip 6 if you're short on time or energy.

"Bridgette has a hat! What do you think of that?"

Note 1: Here are stated the opening lines of a song we learned at motor therapy class. Bridgette has learned to love hats because of that song. The one pictured above and below is her current favorite. She places it of her own accord and then crawls about the house, often in nothing but a diaper and her hat.

Other special hats include 1) her first-year birthday tiara, 2) favorite toys, 3) the fry basket at IHOP.

Note 2: Despite loving hats, she still will NOT allow me to touch her hair. She won't even let me brush it. (Although she has learned to "brush" it herself.) The best I've ever done is to place one clip. When dexterous enough, she promptly removes it. You may witness the Frizzy Einstein in photos for a long while yet.

Note 3: She does, however, let me floss her teeth. It is one of her favorite activities.

Note 4: Once home from the hospital, Bridgette's sleeping schedule was not only utterly screwed up, but in addition, she was traumatized by my absence at night and would not sleep even when exhausted. She would cry for an hour and still not go down. Dealing with our own personal exhaustion and having tried a myriad of solutions, one night I sat and rocked her in our glider-chair.

She thrashed and arched and tried to throw herself out of my arms. That is, until I sang Baby Beluga. No sooner had I sung, "Baby beluga in the deep blue sea..." then she completely stilled, settled in, suckled her blanket, and closed her eyes. It was the weirdest, fastest switch I have ever seen her pull. We sing and rock before naps and at bedtime now, and she's gone right down every time.

Note 5: Despite her apparent need for me at bedtime, she was rather fearless this evening at Barnes & Noble. At every moment, she was making a new-found bid for freedom. After 18 months of sitting still, she's a speed-crawler after only one week.

At one point, as she escaped way down an aisle from me, she turned back to check that I was still there and watching over her, as babies will do. I decided on a loyalty test. If I clearly stepped out of view around the corner, would she panic? Would she crawl back to me like a good little lamb? Would she follow her mama duck?

After a few seconds I peered around the shelves. And wouldn't you know! Not only had she not tried to follow me, she didn't seem to care one whit that I had disappeared. In a matter of moments, she had crawled twice as far down the aisle and sat tapping the shoe of a woman who obviously didn't like babies. When I moved to rescue her (in fact, I'm not really sure who I was rescuing), Bridgette tried to escape again!

Note 6: People have often expressed a sentiment such as "Just you wait! Once she's moving, you'll wish she wasn't!" I know it's early yet, but I don't feel that way in the slightest.

The thing is, when your child is delayed, there is nothing you want more than for them to have a normal life. It's not about my personal convenience.

I cannot tell you the jealousy and bitterness I dealt with all those years I couldn't get pregnant, yet I seemed surrounded by mothers on all sides. Though I was established and had empty rooms to fill in a lovely home, so many of these mothers were younger than myself, sometimes fresh out of high school or college, jobless, and practically homeless. It didn't really make sense to me.

Of course, I have a child now, and many women who want children are never that lucky. I never forget that. I can't. Other women have lost babies, and I can't even imagine that kind of pain. So after 5 years of waiting, my first child... well others have had worse, I know. But I don't suppose my first experience has been so very easy either.

Besides the whole Hirschsprung thing (PICCs, incisions, scars, organ removal, a year of infant ileostomy, enterocolitis, special diets, hospital stays, and many other expenses, both monetary and emotional), every Sunday at church I sit and have to squelch another kind of jealousy and bitterness as I watch children born after Bridgette walking about months and months and months before her. It's hard to explain why it's so hard for me, seeming such a minor setback in the long-run.

Perhaps it's so small in the scheme of life that I shouldn't waste emotion about it, but despite attempting to handle it gracefully (to greater or lesser amounts depending on the day and who you are -- whether I've ever expressed my frustration in your presence -- although for most this will be the first public expression I have made), I have often been truly troubled that Bridgette's mobility is not on par with "normal" kids. I have felt anger, but directed at no one, just emited toward the cosmic void or held inside myself. Mostly I'm simply sad for her. The phrase "It will come," is not helpful.

And now some mobility is here at last. No walking yet, but even with crawling I couldn't be more pleased! While I don't look forward to events like losing her in the supermarket, I'm terribly excited for her to continue moving forward, moving backward, moving anywhere on her own.

Monday, January 25, 2010

Last? Enterocolitis Update

I apologize if any of you have held your breath waiting for an update. The truth is that hospital visits make me weary. When the worst is over and the trial-trail appears to head downhill again, I like to gather my family around me, forget about the rest of the world, and have a little party.

Sorry world. It's not meant to be exclusive. It's just that our house is only so big.

With the help of antibiotics and rectal irrigations at home, Bridgette became increasingly more healthy over the course of last week. On Wednesday we visited Dr. Black for a check-up. He seemed so genuinely happy to see us, it was as though he sort of forgot we were there because Bri had been desperately ill. He didn't charge us for the visit.

We had heard, and Dr. Black corroborated, that only about 20% of Hirschsprung babies ever deal with enterocolitis, but if you are included in that lucky 1:5 ratio, chances are, you will deal with it again. The frequency ranges from "more than once" to "maybe often."

Dr. Black answered some questions that have lurked about since this whole episode began, but also, he agreed that baby B is a bit of a weird case. For example, he was honestly surprised that her enterocolitis came about at random and didn't seem to be related to receiving antibiotics.

We were told from day 1 to keep her off antibiotics if at all possible. Antibiotics kill the lovely "good flora" in the intestines along with the "bad bacteria" it's meant to destroy. The intestinal flora keeps stuff like somewhat-naturally occuring C diff in check. Young Hirschsprung children are easily unbalanced, especially due to antibiotics or constipation. In Bri's case, we weren't dealing with either.

I suppose there could be a number of other potential intestinal upsets to throw her system out of whack... perhaps a virus? traveling? a reaction to food? We don't really know. I don't ever expect to figure it out.

Ironically, the primary enterocolitis cure (the antiobiotic Flagyl) is also part of the curse. As the doses end, the C diff (or other offending biological baddy) can flare up again since the good flora (and I really can't help but think "good fairies" every time I write that) is killed, as explained above. This, in fact, has occured with Bridgette. On Saturday night she woke up literally screaming at 12:30 a.m., 3:30 a.m., and 5:30 a.m. On Sunday her appetite was down and her dehydration was up.

Despite the flare-up, we've found a soft, if not silver, lining in our personal stormcloud. In this case, we learned how to better recognize the symptoms of enterocolitis, and we learned how to treat it at home. If we catch the signs early enough, we may be able to avoid administering Flagyl just by doing rectal irrigations.

For example, this is what we did on Sunday, and it seems to be working beautifully. She ate well today, had two natural bowel outtages, and had several diapers fairly soaked through with nothing but urine. (We wonder what parenting is like for others. Is this truly normal?)

If we can't avoid Flagyl, Dr. Black has said we can call him for a prescription at any time. He also gave me a couple of "blank checks" so to speak. We have two dateless Flagyl prescriptions that we can fill when needed or prior to traveling, so we don't have an emergency while we're away from home. Since we hope to be camping at Yellowstone later in the year, this is tremendous insurance.

There is a third part to her treatment -- the administration of probiotics. We were giving her probiotics in the past, but not regularly. Now every single bottle** receives a packet of Florastor Kids (which is quite pricey and smells like yeast) and sometimes a crushed capsule containing L. acidophilus and L. bifidus as well.

In the end, the goal is hydration and preventing her intestines from rupturing, thus keeping her out of the hospital. Most kids have built up enough natural immunity by the age of five to prevent enterocolitis from occuring at all. (And I admit I hope it's sooner. As unpleasant as it can be now, I don't want to do rectal irrigations with a 3, 4, or 5 year old.)

Here is Bridgette with her lovely balloon bouquet, provided by G & G Hoose and Uncle Jon the day she arrived home from Primary Children's. At the moment this photos was taken, she hadn't quite warmed up to the largess or the largeness of that gift yet, but now she sleeps with the fuzzy bear and plays with the still floating mylar balloons every day.

** Some words about Bridgette's diet:

Bridgette does not typically drink from a baby bottle. She utterly refused to use sippy cups, so we've moved straight to cups, usually using a normal thin straw. Since sticking a cup of milk in my purse gets fairly messy, when we're on the move, sometimes we revert back to a bottle (sans sippy cup option). We just knife a wide swathe across the top of the nipple so she can suck it down rapidly.

In keeping with the rest of the total colon Hirschsprung community, we have found that Bridgette doesn't tolerate dairy. Traditionally, it has made her very, very sick. So each ration of "milk" is made in the following fashion: half unflavored Pedialyte, half rice-milk, one scoop powdered soy formula per two ounces liquid base, one packet Florastor, and one capsule other probiotic. The Pedialyte is concocted to replenish electrolytes in kids with diarrhea and the rice-milk makes it taste sweeter. It's a process, but we're so used to it that we don't blink. We've tried moving her to straight soy milk, but oddly, that was worse than dairy. Others we've talked to have found the same thing.

More oddly, Bridgette's diet has been so limited to this point that I could list her whole diet on the palm of my hand. However, since this bout of enterocolitis cleared up, we've found she's eating ... everything... and not having much trouble. We're feeding her yogurt and cheese (yes, in fact, both dairy products), vegetables, etc., and she's digesting them well. We have not given her high fiber foods like blackberries, but she did try a few kernels of corn. It makes me wonder how long things may have been unbalanced in her system and whether it actually has any bearing on her diet. Very confusing.

Thursday, January 14, 2010

When It Rains... Tee hee hee!

... it pours! Snark, giggle, giggle.

Our basement just flooded.

No, I'm not kidding.

But hey! If I wasn't concentrating on preserving Bridgette's precious life, I'd probably be whining about it. As it is, we consider this a somewhat minor inconvenience. I actually laughed when I saw the mess. But VERY glad we were home when it happened. We caught it fast and turned off the water to the whole house.

Luckily, not too much was ruined (though a great deal is soaked through) and nothing too personal or family heirloomish was included in the soppage.

And on the super-positive side, we just re-organized the basement in record time!

As long as we have water before Bridgette's next irrigation is due, we should get off just fine. An emergency plumber is here now charging us many buckeroos because we can't fix it ourselves. The whole house is starting to smell very damp. No need to buy that humidifier now!

Here are the promised X-Ray images:

1) This is Bridgette at 3 days old before her emergency Ileostomy. I share it by way of reference. You can see her distended colon and other instestines. Poor little baby. Even in shadow, it's pretty obvious how big her belly had grown.

2) Here we are almost exactly 18 months later with a bout of enterocolitis. Although the image above is sharper, I think the total bowel distention is still pretty clear. Of course, her colon & part of her Ileum has been removed, so all you're viewing here is the remaining Ileum & Jejunum.

All of that blackish open-looking area is bowel distention.

3) Last, this is the same abdomen shot taken just one day later after a few rectal irrigations and a few doses of antibiotics. You can see that the terminal Ileus is not as distended, but her upper bowel is still pretty large.

We did not get a third X-ray on the afternoon of the 12th. I requested one so I could view the progress, but the surgeon on duty felt it was unecessary. All signs indicated progress, and as he said, "Every X-ray is more radiation exposure." It's true. And she's had a lot of X-rays. Still, given the somewhat touch and go feeling I'm having at home, I sort of wish I'd insisted.

Baby's fever was up a bit tonight, appetite down, bowel a little fuller, etc... just like last night but not quite as bad. What I'm hoping is that she progressively gets worse over the length of each day, just like you or I might respond to a head-cold, and then she wakes up rejuvenated in the morning. With much luck, we will see the ups & downs steady into good health over time.

(Lengthy) Observations

Observing Bridgette last night made me nervous. Her appetite dropped, she looked distended, she wasn't drinking, she appeared somewhat dehydrated, and although she didn't have a temperature, her trunk was hot and her toes/hands were icy (probably from dehydration). I measured her tummy and it came to 46 cm. She had been 42-43 cm at the hospital.

So then we were left with a choice. Take her back in to PCMC or not. Lose another night's sleep and put my baby in a place she absolutely hates (and I don't love either), or not.

Actually, thinking about it made it hard to sleep despite being in my own bed.

I decided to up her rectal irrigations and make an effort to draw back more fluid, even when the syringe appeared to be stuck. So, we did irrigations two hours apart to try to empty her out.

Her girth returned to almost normal. This morning at 7 a.m. during her last irrigation of the night, I witnessed her urinating nice clear fluid. (Oh to make a mommy's heart sing!) Her appetite is back (if you can ever call her appetite an appetite), and she has continued to crawl pleasantly around the house today.

I made some random observations at the hospital too that I wanted to share. They don't really mean much, but they seemed kind of poignant at the time.

1) Between 9-10 a.m., the hospitality breakfast cart makes the rounds on each floor, offering parents muffins, donuts, coffee, and juice. It's not healthy fair, but it's quick and free.

After a long day/night at the hospital, it really feels like you're all alone. But when you walk through the door of your child's room, disheveled, greasy, and bleary-eyed, there are parents pouring out of the doors all around you, disheveled, greasy, and bleary-eyed. We don't talk to each other. We just trudge to the cart, grab a chocolate donut, then trudge back to our respective rooms. Still, it's a moment of solemn togetherness. It makes me think of animals popping out of zoo cages at feeding time... or maybe even like prisoners at mess. It's poetic in it's own right.

2) I noticed at lunch in the Rainbow Cafe that the nurses sit together, the docs sit together, the social workers sit together, even the custodians sit together. The parents pretty much sit alone. (And you can spy them easily. They look disheveled and bleary-eyed at lunch too.)

3) The hospital places hand-sanitizer by the bathrooms, the elevators, and each room. I think they should put some by the three community computers too. The keys are pretty dingy. I could almost see small organisms attaching to my fingertips with every keystroke.

4) Most of my favorite nurses have children who have experienced hospital stays. My least favorite nurses try to tickle Bridgette even when she glares at them, turns away, or cries. They remind me of harpies. When I place my body between the nurse and my traumatized child, they angle around and try to make another attack.

5) I still really respect single parents, especially those who have kids with health challenges. Their burdens seem impossible. How do they do it?

6) After a while, I start imagining a hospital world like Myst or Riven. I think maybe I should crawl down that odd pipe or squeeze through a vent to explore the strange world I'm sure to find on the other side.

7) No matter what, holding a sleeping baby while sitting in a chair all night hurts your buttocks. Shifting doesn't seem to help.

8) 18 months is a difficult age to be in the hospital. You don't understand what's happening and you're confined without reason. "There's the floor, mom! Let me play on it!"

Here are some photos:

Bridgette turned 18 months last Friday. We wanted to celebrate at the petting zoo, but she had bad diarrhea and vomiting all day (now we know why). Saturday morning she appeared to be better (diarrhea had stopped), so we took her. She was miserable (now we know why). To boot, I seriously think it was the coldest day of the year. We'll try again maybe in warmer weather when babs doesn't have enterocolitis.

She rode these two ponies.

This was at home on Saturday, just a few hours before taking her to the hospital.

Emergency Room vital statistics.

I.V. for rehydration.
This is the room that got voluminously doused in powerful intestinal discharge. And also so did many of the folks standing in the room.

A few days later with Uncle Jon.

One of the social workers got babs a playmat. The mat was nice in theory, but B kept pulling herself to the edge and getting very, very angry when I wouldn't let her move onto the hospital floor. She hits her head on things when she's mad. It's pretty disturbing.

You might notice the toy with which she's playing. You are supposed to turn a knob, slide a handle, push a button, pull a lever to make the doors pop up. Bridgette found a shorter, more efficient route to open them. Force them.

This was the best decision ever, and I wish we had asked for a bed from day 1. This gave B more room to play than a crib. It had obvious boundaries but didn't look/feel like a cage. Also, it allowed us to sleep together in something besides a chair. She required my presence for all moments of sleep until the last day.

This was our glorious view -- same view as our last stay, actually. I'm not quite complaining (ok, maybe I am), but our room had a shower. Most don't. I did get to use it once.

This was the morning of the day they sent us home. Bridgette finally slept by herself. Ahh...

And seriously how cool is this??? An ice-sculpture at the entry-way. I didn't see it until much later since we entered through the emergency room.

And now, a moment of cuteness! Capturing this took some patience (on both our parts). I tried all day yesterday and today to video record her progress, but she doesn't like to crawl when I'm filming. She is still equal parts crawling, bum-scooting, and army-crawling, but I think she's morphing towards crawling full-time. If you listen carefully, you can hear her say "ice."

Wednesday, January 13, 2010

Quick Update

Sorry to leave you without updates for a few days. There wasn't much to report, and when there was, I hadn't any time to do it.

Bridgette and I are home. She was discharged last night around 5 p.m., so we were stuck in Salt Lake City rush-hour traffic trying to get back to Utah County. When we arrived, I discovered that the only pharmacies in the county who could compound Flagyl were closed, so my brother and I drove back up to Primary Children's last night, not returning until close to midnight. That wasn't initially on my list...

So Bridgette is not better, but she is better than she was, and at this point there is nothing they were doing at the hospital that we can't do at home. She continues to have C diff related enterocolitis with around-the-clock rectal irrigations and antibiotics/probiotics. The irrigations are on an 8 hour schedule, with Flagyl every 6 hours, so no matter how we try to swing it, that means we're up at least twice in the middle of the night.

Her first home irrigation resulted in an explosion that was extremely messy. Our second irrigation was around 6 a.m. and was much more neatly feated.

To accomplish a rectal irrigation, we have to insert a rubber catheter (~18") through her rectum and up into her Ileum as far as it will go. The catheter is attached to a 60 mL syringe, and we wash her out with homemade saline solution. What will pour out naturally through the catheter returns that way, and what does not come out on its own, we attempt to draw back with the syringe. We do this three times in a row at every irrigation.

It sounds fairly simple, and in concept it is. However, her bowels are sick and pressurized, the process hurts our baby, the stuff coming out is contaminated with C diff, it's somewhat hard to catch (especially when it explodes out around the catheter or pushes the catheter out completely), PLUS, Bridgette is an excellent thrasher. Lest you think she doesn't walk because she has weak muscles, allow me to dispel that myth post-haste.

We have to watch for several symptoms: loss of appetite, return of fever (101.5+), distended belly, or no urine (and other signs of dehydration). If these occur, we have been commanded to return her to the hospital.

We are also supposed to be sure she can stool, but this is a problem because we're trying to wash out all her stool in the irrigations. Makes it hard to tell whether or not she can stool on her own. Also, she ate half a banana yesterday (the most she has eaten in weeks), and guess what was sprayed all over us and the walls after our first home episode? It's true. Delicious. This also makes it difficult for me to know how much liquid/ nutrition/ antibiotic she is absorbing since we feed her then irrigate her.

Even after lots of questioning, no one could really tell me "why" this happened. Hirschsprung-related Enterocolitis is simply a fact of her Hirschsprung existence. For whatever reason, the natural forces fighting each other within her intestines are easily unbalanced, causing overgrowth and shut-down. Once her intestines distend and stop absorbing, she is in serious danger. Had we not taken her to the hospital, she would have died within a couple of days.

I have xrays of her distention that I'd like to post, but I'm having trouble removing them from the xray software. When we can figure it out, I'll post again.

So, her current status -- Bridgette is in semi-quarantine. She shouldn't really be around people for at least two weeks at which point we will return to PCMC for another C diff stool test.

I call it "semi-quarantine" because she shouldn't have visitors or go anywhere, but Jeff and I (and Uncle Jon) obviously have contact, and by necessity of life, we are required to continue living... working, teaching, buying groceries, etc. We are taking good measures to protect ourselves: rubber gloves, lots of soap and water, as little contact with her fecal matter as possible... and since that isn't really possible... more gloves and washing up.

Speaking of Uncle Jon, he is playing with Bridgette while I write this update. And if you've gotten this far, I have good news as a reward for your diligence. Bridgette crawled today!!! Real, honest-to-goodness two-hands, two-knees, move from one room to the next crawling! It's so cute! It makes me think of Yoda's little wiggling butt when he's rifling through Luke's belongings on Dagobah. Seriously, such puppety, jerky small-body motion. How can you not love that?

Mine! Mine!

Sunday, January 10, 2010

Spelling Off

Jeff's taking a turn at PCMC so I can sleep a few hours this afternoon. Thought I'd do a super-fast update first.

1st) There's little change in Bridgette's health today. She is taking Flagyl for enterocolitis & C diff (although the C diff is undiagnosed -- her stool samples are still being tested) as well as a pill none of the nurses could even pronounce for potential E coli (again, undiagnosed). Her temp vacillates with her Tylenol dosages. The pill gets mashed up and mixed with water, probiotics, and grape flavoring, but judging by the way Bridgette gags when she takes it, the grape flavoring doesn't quite mask the squashed up pill.

2nd) B. has had a second set of xrays today to see if intestinal distention has decreased. We haven't gotten the official readings back yet, but from my own limited eyes & experience, I thought her terminal Ileum was slightly less distended. The irrigations are washing out almost twice the amount of fluid going in (1 litre saline goes in; 1 2/3 litre green-brown slush comes out). She hates it and screams very loudly through the whole process, reaching for mom-mom-mom-mom and pouring out the tears. She has not vomited since last night, but she's also not allowed to eat or drink. Her meds have stayed down.

3rd) We have lots of questions. Although we always knew to watch for enterocolitis and are aware of many HD families who have dealt with it, there seems to be a dearth of straight-up "this is the way it is" kind of facts.

For example, B's signs & symptoms didn't fit a neat description and the ER folk almost sent us home after I.V. fluids. So, you have a lot of questions too? I'll do considerably more research when we're not in the thick of it, but for now, this is the best article I have found: Enterocolitis Associated with Hirschsprung's Disease.


We're on the third floor, same room as last July post-pull-thru-surgery. Baby has enterocolitis. Her first rectal flush hit two walls, two techs, one surgery resident, and covered her gurney in a litre of awful smelling... well... enterocolitis slush. Now I know how to recognize the smell. No wonder I almost vomited from it yesterday.

She's getting rectal flushes every 6 hours and is on some mega-drugs. She may be having a reaction to one though. Her legs have turned red. They'll do I.V. Benedryl soon. If she is reacting to one of her enterocolitis drugs, this is bad on several counts.

It's about 1:30 a.m., and I've slipped out to make this update and see if I can get a little dinner. Must run so I can get back to put baby down for the night.


Saturday, January 9, 2010

Headed Back to PCMC

Baby and I are leaving now. Just thought we'd let you know. Jeff will update when there's more news.

Bridgette has been vomiting the past two days and has had little appetite the past several months and absolutely no appetite the past two days. She is running a fever of 102.4 and has been extremely lethargic. Will post more once Kelly arrives at the hospital.

Baby was very dehydrated and has had two rounds of IV fluids. That has really helped her perk up. They are testing for a urinary tract infection now.

Baby is being admitted, she just threw up some dark yucky stuff. Check back tomorrow morning for updates.

Friday, January 8, 2010

18 months today!

It was going to be a really great celebratory kind of day.

Plans for today used to include a quick health assessment at Jeff's workplace in the morning, then lunch together as a family, the petting zoo this afternoon (because she loves animals), dinner at Thanksgiving Point with 1 1/2 candles, and of course, lots of adorable pictures in her super-cute new outfit bought just for that purpose.

Alas, alack.

A few minutes after Bridgette was dressed this morning, she vomited all over her new outfit. It's in the hamper. No pictures.

We went to the health assessment with Bridgette wrapped in a towel. As mentioned on Facebook, "effluence" is the word of the day, from both ends. And all over her. And the towel. And me. And Jeff. I almost vomited at the same time as her from the retching noises and the smell and site of both my legs covered in diarrhea. (Although in good news, the assessment showed that Jeff and I are both quite healthy.)

Fortunately, Bri fell asleep on the way home, so she is in her crib while I clean up and do lots of stinky laundry and make this little update.

I'm hopeful this will pass quickly. We're guessing it was something she ate last night. She has a very limited diet for just this reason, and yesterday we let her try a few new things for dinner. Silly us. If it's more serious than that, we'll be taking her to PCMC this weekend.

Happy half-birthday, Sweetheart!

Saturday, January 2, 2010

5 Generation Photo, et al.

Clockwise from top left: Bridgette ClaraLynn, her mother Kelly Elizabeth, her mother Lauryl Beth, her mother Elizabeth Joan, and her mother Audrey Thelma. Cool, no?

*Please note the lovely coordinating cornucopia accessories, all salvaged and expertly reworked from a set of matching mu mus we wore for a 4-gen photo taken several years ago.

Bridgette is particular about people right now, and for reasons unknown, she only likes 1/5 of us. Sadly, Nana was not included on her list, so this is the best photo I got of them together.

Now, for the rest of the Christmas blog?

Here is the trouble. How do you make one spirited, non-boring entry that sufficiently documents a family reunion in happenin' Amish country that includes 5 generations and both sides of the family who traveled from Texas, Ohio, Utah, and Canada?

You don't. But since I'm never short on effort, here goes! (I will write a separate entry on Amish/Mennonite country later.)

1) This is one group shot with our freshly hewn Christmas spruce. Apparently people do this when they live in forested lands.

2) Here is another group of us visiting Nana at the nursing home on Christmas Day.

3) Here is a third group of us on our last day at Fields of Home. See. I'm keeping it short.

4) I put this one in because Bridgette's blond curls were so messily scrumptious.

5) I rarely include unclad baby photos, but here is documentation of her surgery scars. They have healed up nicely.

6) Ask anyone. This is "The Look" we all received for most of the week.

7) Christmas morning, entering toyland with Papa.

8) Can't blame her for "The Look" in this one. Still, definitely one of our loves.

9) Check out those beautiful blue blue eyes.

10) "The Look" explained. Bridgette actually spent the entire trip very sick. A lot of severe diarrhea, no appetite, and one day of vomiting.

We almost took her to the emergency room the last night of our trip. We have almost taken her since we've come home too because we don't know if it's enterocolitis, a very serious problem with Hirschsprung kids.

We did take her to the pediatrician and discovered Bridgette has an ear-infection she hasn't complained about a bit. It's always a toss-up with her. We're watching things closely.

11) Considering her sad health, we got a lot more good photos than I expected. This one is in my VERY favorites: Bridgette and cousin Kathryn.

12) Not bad, eh? I pared hundreds of photos down to those 13.

Now, in case you felt gypped, fear not. I have also included a timeline of photos in rapid order. Since 12 & 13 are the theme of the hour, I made this video with some snazzy music called "One Dozen Monkeys," courtesy of Scott & Julianne and They Might Be Giants: Here Come the 123's.

I wish I could label a handful of photos which truly deserve it, but each photo only lasts for 1 second, so it would be nearly impossible to read anyway. As such, here's a little game I'm making up right now.

See if you can find:
- Julianne, the origami queen.
- Bridgette's favorite homemade decoration on the Christmas tree.
- The telepathy blocker. It's scientific.
- The murderer.
- A tractor pulled caboose.
- Emma & Bridgette still looking very similar, though not mostly-identical like at birth.
- Bridgette's revenge on Grampa's tickling foot.
- The missing piece to one of our puzzles.
- Grampa Kenny's war medals and WWII money.

** requests for enlargements on any video photos will be accepted by way of blog comment.