Monday, August 31, 2009

Back to Health?

Post-surgery, we've lately posted on several family happenings. Thought I would give a Bridgette health update this round, since we haven't focused on that in a few weeks.

For those of you who are interested:

1) B's yeast infection has not gone away, but it is under better control than when we found it. Her bum is still quite raw (fluctuates, some days are better or worse than the raw-norm), and it is hard to control the yeast and the normal rash simultaneously. She has to wear a constant thick barrier to protect her skin from her acidic stool, but it creates a wet, warm, dark environment in which the yeast thrives. When we use the anti-fungal ointment, the barrier doesn't stay on. Very Catch 22.

At the moment we are trying a prescription Nystatin powder instead of ointment, and she's gone back on an oral anti-fungal. It's only been two days, so we're waiting for results.


Here we are at Wal-Mart where a young man was doing a photography fundraiser for his new venture O.C. Theory -- attempting to help NPOs/NGOs to accomplish their goals without burning out. An interesting thought.

2) Baby B now has 14 teeth. Pre-surgery she had 6, only 6 weeks ago. Some of our sleepless nights have nothing to do with her bum. But check out that awesome smile!


3) Although baby is not rolling regularly, crawling, walking, or weight-bearing, she does roll occasionally... on purpose... by herself. Her incision sites have healed quite deliciously, and although they are long red lines, they don't seem to cause her pain. She still doesn't love tummy-time, but she doesn't scream and cry like she used to do. Mostly she just whines and then rolls onto her back.

We have decided to do an official evaluation to assess her development, since she continues to exhibit a number of delays. Her primary delay is of course gross motor skills, but she also seems a bit slow in the speech category, not that she's exactly quiet.

Her fine motor skills are developing well, and she continues to show obsessive-compulsive tendencies (we like to call her "detail-oriented.") She is bright-eyed, alert, shows no obvious physical abnormalities besides Hirschsprung's, and loves the sound of the noisy, mufflerless motorcycles buzzing down our street. We're glad at least one person in the house perks up at what the rest of us consider an annoyance.


4) Baby still chokes semi-frequently. Not sure what that's all about.

5) Oh those sleepless nights! Initially, Jeff and I wanted to have two kids, back to back. With the events of B's short life, we've had to reconsider our tentative family plan. Right now, I can firmly attest how pleased I am not to have an infant on the horizon. We no longer have much of a sleeping schedule; it is sporadic at best. We do occasionally get a good night's sleep. And then again, occasionally we don't.

On Saturday night, Bridgette was in a constant state of pain and was either awake and crying or "asleep" and moaning. Her best sleep was Sunday morning between 2-6 a.m. At 9 a.m., this is how we found her in her high-chair. Those bananas made a right-cushy head rest for our dear little lamb!


6) Baby is 29" long and 22.6 lbs. That puts her at 50% height and 60% weight. This is good news! She lost a couple of pounds in the hospital, but she's gaining weight like a champ again, despite not eating as much as before. Her menu has expanded to include a few more items, although her diet is still quite restricted.

7) The lengthy changing-ritual and frequent diaper-changes makes it hard to take her anywhere for an extended period of time, but we're doing a bit better at getting out. One of our favorite outtings is to the park for some frisbee hauls with our awesome dogs. We make a great pack. They are super athletic.




8) Here is the list of remedies we've tried for her bum, in a considerable number of combinations:

Bath
Bath with chamomile tea
Bath with oatmeal
Bath with apple-cider vinegar
Air dry
Hair-dryer on cool
Pat dry
Baby powder (corn starch, very bad)
Baby powder (talc)
Ilex
Night-time Desitin (our favorite)
Dr. Smith's Diaper Ointment
Vaseline
Calmoseptine
Cavilon
Baza Cream
Critic-Aid
Ostomy powder
Nystatin ointment
Nystatin powder
Nystatin liquid suspension
Diflucan suspension
Probiotics (acidophilus, L. Bifidus, etc.)
Cleanse, wet paper towels (no wipes, even the gentle ones hurt)


Our current favorite mix is oral probiotics and Diflucan suspension with the following layering technique at diaper changes:

Nystatin powder
ostomy powder
Desitin
talc


At night we alter the system slightly:

Nystatin powder
Ilex
talc
Desitin
talc


We have also been in touch with a mom who raised two Total Colon HD boys, and she suggested mixing Desitin with Karaya powder to make a gummy paste. She said it saved her, so we've ordered some, but it's currently on back-order. We'll be sure to post when we find the "perfect" solution for us!

Sunday, August 23, 2009

Finally


When the graduation ceremony was over, I sat in the car and cried. Bridgette was crying too. Poor Jeff. I couldn't help but think how graduation was a truncated version of my whole graduate experience.

Allow me to recap the day:

-Babs had a bad night, no sleep for anyone.
-Send Jeff to work, tend my child who cries all morning.
-Try to put her down for a nap. No takers.
-Chuck her in front of the TV so I can get ready.
-Surprise! Flowers arrive from a friend! :)
-Pick Jeff up from work, pick up baby's robe from south Provo.
-Arrive early to meet cohort.
-Manage to arrive late to every other venue.
-Run from place to place. Run in heels.
-Swim upstream against the processional current to get to my place in line. Very obvious.
-Get out of order while taking "official" photos, screw up their numbering system.
-Realize that "N/A" was a really stupid thing to write on the order form for both email and phone.
-Track down the order form people.
-Receive diploma, babe in arms, without tripping or passing out!
-Sit down in the front row, baby cries. Very obvious.
-Track down Papa Jeff in the stands, who helps, like always.
-Enjoy the speakers with my friends while we add commentary and snicker.
-Realize after the closing remarks that I haven't eaten all day.
-It's about 4 p.m.
-Grab an orange juice and a brownie.
-Go to take graduation photos. It's raining.
-Take them inside, on the crowded track.
-Baby's really crying now.
-Rain stops, take a few solo shots outside.
-Get in the car.
-Cry.

The rest of the day was better. I had planned to cook dinner for the open house at six, but Jeff made me sit and rest while he cleaned the house (ie: piled everything on our bed) and ordered pizza. The open house was a lot more relaxing, and it was fun to see a few family members and many good friends. Thanks to those of you who stopped by, hung out, and helped us eat our pizza!

Here are some photos:

Look at baby's cute little face! We haven't received BYU's "official" photos yet, but I hope they turn out well.

Jaunty little caps, no?

Sporting the "salmon" Master of Public Health hood.

Bridgette, me, Steve, Kristin -- the last of the cohort to graduate. And when you look at our individual circumstances, I think we did GREAT to all make it only 4 months past the 2 year plan. (Please note the mismatched hoods: salmon, russett, and citron.)

With my good friend Dr. Gene Cole who helped me get through all my graduate "disasters."

Meltdown #582.

Stressful? Yes. But a beautiful day, in the end.

A few days later we took some more shots of baby in her robe, when she was in a better mood. But first, here she is "standing." She's not really, but this is what she'll look like when she finally realizes that legs are pretty useful.






And one to grow on. I was attempting to document the Einstein hair, but who can refuse saying "awwww..." at this?

Wednesday, August 12, 2009

Feelin' the Beat

Bridgette has always loved music and rhythm. After I lost a bidding war on eBay for a particular drumset, baby got the next best thing.

Video #1 -- Babs, a pot & a pan.


Video #2 -- Babs, a pot and a pan, & Chewy the dog.

Admission. The pan was dirty with some crusty spinach ravioli remains; that's why Chewy was licking it. But she needed two right? The dishwasher is a very convenient store.

Sunday, August 9, 2009

Graduation!

Baby and I have finally earned our Master of Public Health diploma! University commencement is on Thursday, and we walk on Friday! Anyone who wants to help us celebrate is welcome to come to our open-house Friday evening.

These last two and a half years have gone by fairly quickly but certainly not in a blur.

Between the unexpected and somewhat difficult pregnancy, the torn ACL, the late (late late all night) nights of homework, the class instruction, the projects, the presentations, the early labor, the bed rest, the late (late late all night) nights of infant tending, turning 30 years, packing up the whole house to recreate a nursery in the classroom then nursing all day at a little desk, the professors, the friendships and fun with my cohort, the internship with the Medical Reserve Corps, the community disaster drill, the multiple visits to the hospital and two major baby surgeries, the ileostomy, and our current baby routine (which is not all that routine as far as baby care goes)...

...I have a lot of poignant memories. There have been a great many tests (both school and life) and some very sweet moments.

I'm grateful to my husband, parents, other family members, and good friends for supporting me through it all. I love you guys.

Monday, August 3, 2009

A Patriotic Bum

If you randomly Googled "American homelessness" or "old-fashioned apple-pie beggar," you'll be disappointed to find out we're talking about a whole different brand of bum. The posterior type.

At the park down the street tonight for a Lindon Days concert of zippy, toe-tapping Nova Scotian music: Kirkmount

Bridgette went back to the doctor today. It all started on Saturday when we ventured out for the first time since the hospital. Bridgette's cousin, Dustin, had a birthday, and we attended the party. While riding in the car with us, cousin Tyler said, "Bridgette looks like she has something green on her tongue."

Jeff had just fed her a little grilled zucchini, so I figured she had some of it stuck on her tongue. When I checked though, there was a yellowish / greenish shadow near the back of her tongue. Later that night, as I was explaining baby's rash problems, Aunt Kelly asked if Bridgette might have a yeast infection. I didn't know. On Sunday I searched Google images for yeast infections. Not pretty. And also troublingly familiar looking.

Today at noon Bridgette went to visit her pediatrician (but saw her nurse practitioner instead because Dr. Savage had to run to the hospital to deliver a baby.) Ends up baby has yeast everywhere! Talk about feeling like a bad mommy. Having never seen diaper rash before, and knowing that hers was supposed to be miserable, I didn't realize it was compounded. And yes, thrush in her mouth too. So she is on three new meds: yet another bum cream, a systemic anti-fungal, and a swish for her mouth. I am so, so grateful that both Kelly and Tyler brought up the infection.

In the meantime, we are still trying to get baby to eat... anything. At breakfast I offered her a blueberry and found immediate success! I know they are high fiber (an issue in her shortened intestines), but I let her eat about 10 before putting the kibosh on her feast.

Too late.

Within 15 minutes I found a truly astonishing sight in her diaper. Red, white, and blue stripes! The blueberries might have been an inky purplish going down, but they were blue as blue on the other side. Just to the right and left were two stripes of bloody skin and to each outer side was the white Desitin that never seems to come off, even in the tub. That's our all-American girl!

Daddy with Bridgette and Uncle Jeremy, Jeff's twin. They work at the same company, and Jeremy often drives Jeff to and from work. (Thanks, Jer!) Photo taken this afternoon when Jer dropped JJ off.


This is a Grandma / Aunt / tight-friend video for sure. Quite long. Not much happening. Watch at your own risk.

Sunday, August 2, 2009

Pants! (and the Beast Beneath)



So we have had requests for an update and for more photos. We haven't posted photos for a while because our camera is broken. Apparently our model breaks down in extreme heat, and I first noticed it having trouble in San Antonio. We're sending it off to be repaired, and in the meantime, Ma Johnson is letting us borrow hers. We took one family photo with it last night before the batteries died. It's recharging now, so expect more photos soon.

We haven't posted anything new because not much new is happening. Baby still doesn't eat like she used to, but she continues to improve by tiny increments. She completely shuns bananas (which thing we thought could never happen). We've actually reverted to baby food for a while to try to get her eating. It's... working? Doesn't eat much of it, but tastes it here and there. She has lost almost 2 pounds from her pre-surgery weight.

In good news, baby gets to wear real clothes! The photo above is her first foray into t-shirts and trousers. Cute, no?

Underneath those trousers is some pretty nasty bum rash. As of last night, her whole bum was a crimson red. As of this morning, her entire bum was dripping in blood. We have a wicked trade-off with which to contend. Sleep? Or multiple bum changes every night to control the rash? Her sleep schedule got so screwed up at the hospital that she's been confused like a newborn about night and day. We got her to sleep through the night both Friday and Saturday (last night), but sleep without diaper changes each hour takes it's toll on her once beautiful skin.

We've found that the Night Time Desitin (layered with ostomy powder and doused with baby powder) actually works better for her skin than anything else, including the Ilex. Talking to another Total Colon HD mom in Israel, she found the same thing for her baby. However, now we're considering doing Ilex at night and Desitin during the day. Maybe that will help on the long stretches without changes.

Jeff is doing a good job at work, and I am mostly playing with and watching the babe. Bridgette has become suddenly more interactive post-surgery (and even does a titch better with tummy time), so I'm having fun telling her about everything in the house, even if she doesn't say any of it back. We're also working on our home business more (we'll let you know when you can check out our first of many web sites), and I've started writing my book again. All in all, our lives are settling back into normality.