Tuesday, November 30, 2010

VACATION TIME!!!

Hello good people of earth --

We went on vacation! To San Diego! And it was great! And sometimes stressful! And then great again! It was so prodigious these sentences all end with exclamation points!

I don't have time to tell you much about it right now; I'll do that in installments.

In the meantime, here is video of my second-favorite part of our vacation (my first favorite being sea-kayaking because I am, in my heart, an actual dolphin and belong in the ocean).

Until then, so long! And thanks for all the fish!

Tuesday, November 16, 2010

Thanks Giving

With Bridgette's recovery, once again we wish to thank everyone who has helped us in any way.

--All the thoughts and prayers from near and far (from family, friends, and HD moms around the world)
--The meals (Ann-Marie)
--Assistance with our grapevine harvest & juicing (late and dark into two nights)
--All the extra work helping with our Festival of Trees tree (young women from Lindon 20th, Ann-Marie, Dave)
--The additional Magic School Bus videos (Bridgette's second word this morning was "Bus!")
--Help moving the last of our stuff and prepping our old home for its renters (Chad, Anthony, Hunsakers)
--We even discovered some secret service rendered yesterday -- someone bagged our autumn leaves!

That's in addition to all the help we had already received, including all the people who helped with our move at the end of October right before Bridgette got sick. We had youth and elders from both our old neighborhood and our new neighborhood who donned gloves and lifted and hefted and made moving as painless as moving can ever be. Thanks! I'm sorry you only have our words for your deeds!

We certainly didn't mean to be a burden, but what already started as a crazy couple of weeks turned into a hyper-schedule with one BIG addition. And since that "one addition" was Bridgette's poor health, it seemed like everything else sort of dropped off the calendar in terms of priority.

We did the best we could, but thanks to everyone else for helping us keep up with life! You eased our physical burden, but perhaps more importantly, you gave us emotional support at a time of worry and stress. We have been amazed and teary-eyed with gratitude.

Thank you, thank you, thank you!

Recovery

Babs had several poopy diapers throughout the day yesterday, and with each one, the pressure in her tummy seemed to ease. She was still in pain when we put her to bed, but not nearly as much.

This morning Jeff opened the door to get her up, and the first word she said was, "Poop."

And how!

Feels nice to be washing all her blankets, tossing her chucks in the trash, and washing out her crib again.

Bridgette's tummy is flat this morning; she's eating and drinking well.

I'm pretty sure we have... recovery!!!

Sunday, November 14, 2010

Whoop, Zoop, Sloop!

We have poop!

Not quite a blow-out but more than a smear.

Don't you love the details? HAHAHAHAHA!

I don't mean to be pessimistic, just realistic, when I say that I have rejoiced in the past only to have a set-back the next day... so we don't know the exact storyline or how it will be set to script.

Still, we're happy to have changed a stinky diaper tonight.

Crossing our fingers for more. Lots more.

:) :) :) :) :) :) :) :) :) :) :) :) :) :)

Here's one more photo for good measure -- hippotherapy the last week of October, before this all went down.

Sunday Refresher

This weekend has been slightly refreshing to Jeff and me because we were able to take shifts with Bridgette. Yesterday I did some errands with my good friend Ann-Marie, and today I was able to go to an hour of church. Yesterday Jeff was able to set up his computer desk, and tonight he will attend a family dinner. We both took turns taking naps today.

Bridgette's update:

Once again, Bridgette's tummy grew in distention yesterday until she vomited last night, relieving a bit of the pressure. The last few days have executed like clockwork. Distention, pain, eating a few bites, drinking a lot, puke, then the inevitable late night discussion between Jeff and me.

. . . Are we doing the right thing? Should we take her to PCMC? What are the pros and cons? . . .

And then we put her to bed here at home.

This morning, she woke up with a wet diaper and has had two more during the day today. There is little in this world as appealing to us as parents. The only thing that could top it would be lots of poop, preferably a blowout.

With the return of partial absorption, we hope motility is next. Jeff thinks she looks less distended today. I am uncertain.

We obviously want to avoid an internal rupture (one of various factors on our list of hospital pros & cons -- if she ruptures, it would be better to be in hospital where emergency surgery could ensue), but whether or not less distended, I have noticed she is not holding her belly and saying, "Mama! Ow!" as often today.

Although, as I write this, I hear Jeff playing with her in the living room. She's saying, "Ow!" and he's asking, "Do you need to throw-up? Do you need the bucket?"

And now here she is on my lap watching the videos of herself that I'm about to post from Halloween. Let's do hope the vomit doesn't happen now...

So that's it! That's about all we "know" -- though I have learned from my interaction with Hirschsprung moms on Facebook that there seems to be a surge of HD kids all over the world experiencing similar problems. Very strange. Many of them are in hospital.

We do want to thank a number of people for their kindnesses -- our leaves were raked by some boys who live down the street, we have received children's videos and games from our neighbors (a welcome relief from Wonder Pets), help moving Jeff's desk from friends, two delicious dinners from the wonderful Krueger-Bott family (the chicken soup broth has been one of Bridgette's favorites), and a lot of comments, calls, thoughts, and prayers on Bridgette's behalf from friends and family.

My friend, Ann-Marie, has been especially kind -- helping me with Festival of Trees ornaments, keeping me company, folding laundry, letting me call in the middle of the night -- you name it!

Thanks to you all!


**Begin, second part:

We sorta, kinda missed posting about Halloween. I think it might have been because we were moving that day, followed shortly by... well, you know, intestine trouble and a plethora of other things.

So here are our photos and videos from Halloween. Once again I haven't had time to edit the videos, so they are posted in their entirety. They are meant to bring comfort and viewing pleasure for Gramma H and Grandma J -- and anyone else with enough patience.

You've seen this one before, but it's so cute, it deserves an encore.



These three are from Kids on the Move. Technically, this was Bridgette's first experience Trick-or-Treating. She was perfectly happy with her pretzels instead of candy.





The next set are from later that afternoon, Bridgette's second time Trick-Or-Treating. Jeff's company hosts an annual family Halloween party. Each department has candy and some go all out and create spook-allies or department themes or photo booths or whatever.

This year was especially exciting because as soon as we arrived the fire alarms began to blare and the entire building was evacuated.

We figured some little kid pulled the alarm, but we found out later that it was from the fog machine on Jeff's floor. Some of the guys had created an old mine shaft. And just for the record, both the fire engine and the delay were worth it. The shaft was COOL!

Also, the fire engine was COOL! (Though I bet the responders were annoyed.)

Since Jeff and his twin both work at Ancestry, our kids get to hang out. Here are Bridgette and Ellie being entertained by the alarms and sirens.

(Sorry about the lens... I guess Bridgette's little fingers struck again.)






A two and three year old can only be fascinated by a fire engine for so long, at which point more entertaining things come into play.




Here is Heidi with her baby Sienna.



And here we are! SUPER-GIRLS!



And you thought I was done. Sheesh.

Here are the videos:



Kinder-Music Class

This class is highly structured, switching activities every five minutes. Often the children are required to do something specific, but occassionally the instructor pulls out instruments and encourages self-designed play. I thought you grandparents and aunts might like to witness it.



The title "Sustained Screaming" pretty much covers it.



I see a FIRE ENGINE!!!

Saturday, November 13, 2010

Saturday Morning Cartoons

More of the same this morning. Still distended, still no output. She is eating some strawberry slush and enjoying it very much. We're hoping we can wait this out and her bowels will just "wake up" over time.

Rectal irrigation last night did nothing. In fact it may have irritated things more. After 180 cc's saline in, we got absolutely no pull-back. However, it may help her stay hydrated. It's so backwards to be hydrating her bottom to top instead of top to bottom.

So, when Bridgette is sick we let her watch an excessive amount of television. Cartoons aren't just for Saturday morning anymore! Since her favorite is Wonder Pets, we've been watching it almost non-stop this week. Anyone have some good kids videos we can borrow to break up the monotony?

"Wonder Pets! Wonder Pets! We're on our way! To help a baby animal and save the day!"

Friday, November 12, 2010

OK -- Addendum

We will probably put her to bed here tonight and take her to PCMC in the morning (or not) depending on what happens in the next 12 hours. If she gets worse, we'll take her in the middle of the night.

She's still not "acting sick" (except for the vomit part and that she's still recovering from being seriously ill and so isn't "normal" either) and when I pulled out my stethoscope to listen (oh, yes, I have my own stethoscope) I could hear bowel noise. I'm not discerning enough to know for sure if it was just in her stomach or if it was also in her intestines. We do know her output is at zero -- no stool, no urine -- and these things are bad.

We'll let you know how things look in the AM.

Once Again...

Baby is worse. We don't know why. Despite a lower temp, more energy, and recent interest in eating and drinking, her belly has grown extra distended and hard over the day, she has moved to zero bowel motility, and is back to vomiting... 4 times in the last 15 minutes. Looked like this morning's breakfast.

We are driving back up to Primary Children's tonight. We are very frustrated, and speaking for myself, quite tense and sad. I don't think Bridgette has any veins left for another IV.

Another in a series of long nights...

Thursday, November 11, 2010

Photos and Less Sick

After another IV infusion last night in our home, Bridgette perked up a bit. She slept well between the hours of midnight and 9 a.m., ate oatmeal for breakfast, drank two cups of Pedialyte, and she's taking a long nap now. I hope it is the sleep of the recovering. Because her system is so sensitive, I can't be sure about prognosis, but all the signs are pointing forward. We await, as always, the proper intestinal function by proof in her diaper. She hasn't had urine in three days, but perhaps when she wakes up, I'll happily have a wet diaper to change.

Here are some photos:

On Friday night we were able to attend the Oquirrh Temple to witness the sealing of our nephew, Matthew, to his parents, Mark & Kelly. (Mark is Jeff's brother.) We had left Bridgette with a baby-sitter, and looking back, we think her symptoms may have started that night.



On Saturday we attempted to take family portraits in our backyard. Bridgette was cantankerous through the entire experience and most of the photos reflect frustration on all parties. Of course, now we know she was coming down with something quite serious.

I felt lucky to have snapped this picture of Bridgette playing with her cousin Ellie. C-U-T-E! They do seem to enjoy their time together, and we're happy to be living close to family, so they can continue to be friends.



These were taken with my cell phone at Primary Children's on Monday night, around 11 p.m. I haven't taken any since. By the time they finally found a vein last night, it was all I could do not to cry along with Bridgette. Her skin is very wrinkled and saggy on her legs and arms, but we hope to help her plump up with continued fluids.




OK, I just KNEW some of you wanted to see how we get a stool sample. We were lucky to get a dirty diaper while we were at the hospital. Otherwise the process is much less pleasant and definitely messier.



These two were taken right before we moved, but I never got a chance to share them.

The first is of Bridgette brushing bear's teeth. This is the bear we're donating as part of our Festival of Trees entry, and I'm sure the buyer will appreciate its minty fresh breath.

The second is of Bridgette laughing hilariously at the crazy cat video we found on YouTube. She was in hysterics. Love that girl.


Wednesday, November 10, 2010

Sick with No Photos

Hello. Bridgette is pretty sick right now. Looking back, we think we can track symptoms all the way to last Friday, but she didn't really exhibit anything serious until Sunday.

By Monday night we felt it necessary to take her to Primary Children's for testing and IV rehydration. They put her on some anti-nausea meds, but they either don't work or don't work consistently.

The Emergency Department doctor suggested she may have viral enteritis. That would have many similarities to her enteritis episodes of the past (bowel shut-down including non-absorption and distention/pain from an internal build-up of gas and stool) only the cause would be viral, not bacterial.

She perked up a bit yesterday. She vomited, only once, though her diarrhea increased in volume and liquidity. Still, whe slept well. She laughed sometimes and moved about on her own.

Last night she got worse. She woke multiple times crying out loudly. She's been holding her belly a lot and saying, "Ow! Ow! Ow!" but besides that, she's turned quite lethargic and despondent. She hasn't had more than a little juice and a few animal crackers over the last 5 days, so I'm sure her energy is flagging on several levels.

I've made a lot of phone calls today -- to Primary's, to our pediatrician, to home health care -- trying to figure out the best course of action. Because we're still waiting for test results from PCMC, we don't see any reason to take her anywhere since she'd only be less comfortable.

When I called PCMC, I found out that the only test result they have currently did come back negative for C. diff. (Clostridium difficile) which is fantastic news. She is on a regimen of Flagyl twice daily to control for C. diff. colonization, and certainly we were happy to hear that it is working. The wide spectrum stool test results (which test is for so many things that two separate nurses could only tell me, "I can't remember them all," when I asked for specifics) should come in this afternoon, maybe tomorrow morning.

We are in the readmit process with home health care and hope to be able to administer additional IV fluids here at the house by later this afternoon. That will only happen if we're lucky. The process requires physician sign-off, medical deliveries from the pharmacy in Salt Lake, and scheduling with a nurse to meet with us and administer the IV. If that doesn't happen fast enough, we will work through our pediatrician to arrange an IV at one of the hospitals in our county.

To boot (or not to boot? that IS the question), my computer died this morning. Keeled over, blah. Jeff initially thought both my drives were toast, but using his computer-wizard magic, he thinks he's figured (or perhaps "configured") a way to retrieve my data. We're normally excellent at doing back-ups, but I hadn't done one since we moved to the new house (for what I hope seem like obvious reasons.) So, I may have lost a few photos and documents.

I'm writing this entry on Jeff's computer. He's taking the day off to help care for Bri and my computer and maybe me eventually. I'm running a little ragged.

We don't know what Bridgette's health means for our plans over the next few weeks. We, as always, hope for the best. And we're still counting our blessings. This post is meant mostly for informational purposes since I know if you're reading this you care deeply for Bridgette and want to be in the loop. We're glad to have so many places to turn for help, medically and otherwise.

If you're local and have a little time to help, give me a call. As of today, there are some tangible items on my list... :)

As always, we're grateful for any prayers you feel like sending up to heaven on Bridgette's behalf. If you're not the praying type, we're all about positive vibes, so send those by way of wind or carrier pidgeon or internet, whatever makes you the most comfortable.

And as random as this may sound to some of you, if you could include my cousin Kathryn and her family in those prayers/thoughts too, I'd really appreciate it.

Wednesday, November 3, 2010

A Few Years Later

A lot has changed . . .



. . . but apparently, not our shirts.