Monday, October 27, 2008

Don't Cry Over Spilled Poop

The adventures with poop continue well into Bri's third month. We've discovered all kinds of ways to spill it everywhere.

The easiest, least exciting, but most annoying is merely when her ileostomy bag breaks where the locking syringe is inserted. Perhaps the most surprising and distressing (thus "crying over spilled poop") is when she has so much poop in her bag after a long night's sleep that we keep pulling the syringe back... back... back... until *POP* it pulls out of the tube altogether. Then 60 cc's of beautiful, yet smelly, liquid gold pour out all over the dresser, floor, and us. I think we'll replace the carpet once she has her second surgery.

Babs is grabbing toys, clothes, burp cloths, etc. more regularly these days. She also makes quite a bit of noise. It is a commonality at home, but my classmates heard their first babbling onslaught last Thursday afternoon. I fear her "participation" in the weeks to come.

I went back over the quadzillion photos I took this last week and realized 96% of them were taken of Bri in her bouncer. In celebration of her legs, I've decided to post every single one of them in this entry. Just kidding. But I've picked out two that I like a lot, even though I posted one last week as well.

Family time...

Four pups, twice over.

Below: Babe's in the Hood. I like her rattle socks. And her scowl.

Below: Bri's dress made by Grandma Summa, smocking and all.

There's also a video for you video-lovers:

Page 1: The shimmer of the duck pond on the trees above. This low-resolution video doesn't do it credit, but it was one of the loveliest sights I've viewed in a long while.
Page 2: A short clip from Kennecott.
Page 3: Playing footsies at church.
Page 4: Scaredy-Chew tentatively trying to make it into the office passed the bouncer. Go-lucky Piper doing it easily.
Page 5: Bridgette asleep in her bouncer... and still bouncing.
Page 6: Mom & babe playing on the floor.
Page 7: *BONUS* For those who last this long, you get to hear Bri's first filmed laugh. It's small, but genuine, and it's all directed at Chewy, the funny-man.

Monday, October 20, 2008

Weeks: 15 (Bri) 1553 (Kel) 1605 (Jeff)

Our Bouncing Baby Girl

We didn't do much out of the ordinary this week. We all became 7 days older. Everyone but me. I claim 9 days of aging because I spent much of Friday calling health insurance agents & billing reps to straighten out our plethora of claims. They are not straightened, but they are straighter. In that time I aged 2 extra days.

If you don't know what I'm talking about, you have never tried to coordinate two sparring insurance companies, health bills that replicate like Tribbles, and over $100,000 in expenses -- all while keeping your baby happy. If you DO know what I'm talking about, I'm very sorry.

Our one expedition was to the Kennecott Copper Mine with nephew/cousin Tyler on Saturday. I believe everyone enjoyed the experience. I figure Bridgette liked the car ride the best because she slept both ways. Tyler seemed particularly taken with the gift shop and the movie in the visitor's center. Jeff and I just liked being out together. The gigantic Hole-That-Was-A-Mountain was fascinating too.

Here is an easy, 6 minute guide on how to turn rubble into copper: CLICK HERE FOR VIDEO

This tire costs $25,000. There are six on each dump-truck, and each tire must be replaced every year.

You know, it suddenly strikes me that most would have commented on its size. Perhaps that denotes what's on my mind...

Here is one of the many, many dump-trucks servicing this open-pit copper mine. You can see how big the mine is when a dump-truck with six large (and expensive) tires looks so small. There are several more dump-trucks on the other side, but they look so tiny that they're barely visible, even when you expand the photo.

Here is an old dump-cart that was used when the mine was first opened. The times, they have a-changed.

Because they're close-ups with no specific reference point, I've always thought Bridgette looks chunkier in the photos posted on the blog than in real life. However, at church on Sunday, someone said, "She looks chubbier in person than on your blog." I suppose it's a matter of perspective. Or is it?

My first letter to Grandma Hoose:

Dear Gram,

Look! I'm wearing some of the shoes you sent me! I was really taken with the one on the right. In my mind, the one on the left doesn't actually exist.

Can you believe Mom finally broke down and put a headband on me? I look like Rambo. In pink. I tried to take it off as often as possible, but Mom said something about red-marks-where-it-used-to-be and have-to-wear-it-now-to-cover-them-up.

I'm smiling this big because you're coming to see me soon.

Love, Bridgette

Monday, October 13, 2008

Week #14

The weather has turned downright nippy here in Utah. We'd just started experiencing the best of autumn when the sky scorned us and poured out snow. Yes, we are so very aware that it's only mid-October. Supposedly it will return to the 60's later this week.

This week baby Bridgette:

1) Got bigger. (Surprise, surprise.) She weighs somewhere between 14 and 15 pounds. This is a wide range of potential ounces, but the scale fluctuates wildly... mostly because she fluctuates wildly while lying upon it.

2) Grabbed a toy for the first time, tangled her fingers in it, and fell asleep.

3) Recognized Chewy as another sentient lifeform, then yanked his fur. I was only trying to get a photo of them together. But I accidentally documented the whole surprise encounter. (As evidenced below, they were both surprised.)

4) Got new warm pj's.

5) Slept for 11-12 hours every night since Wednesday. Whoops of joy, please, all around.

6) Woke up happy every morning. Simply adorable.

7) Went to church. If you want details on this (Grandma) you are welcome to call.

At 8 a.m. the trees, grass, and bushes were completely covered with an inch of snow. By 2 p.m. most of the snow had melted though it was still quite chilly. You can see vestiges on our roof.

8) Spent lots more time at the duck pond, even though birds are a natural reservoir for viruses. It would appear we're not overly worried about zoonotic transmission in this household.

Jeff is enjoying his life at The Generations Network. The company got its millionth subscriber and has celebrated with a series of smallish festivities.

Kelly is already into the crunch of projects, papers, and tests which - like the snow - seems to have come early this semester.

Below: Bri puts on her pathetically sad face.

Bridgette's favorite chill-out activity is watching the fans.

Totally rapt.

Monday, October 6, 2008

How to Get an Ileostomy Bag & Wafer to Stay On Your Baby's Skin

We toiled for about a month with leaky bags and wafers on our daughter before figuring out something that works reasonably well. Hopefully this post will help anyone else struggling with an infant ileostomy.

We order everything from a company called EdgePark. Here are the supply numbers: Hollister Bag: 3778, Convatec Wafer: 411642, BD 60ml Syringe Luer-Lok Tip, REF 309653 (to get stool out of the bag).

We prefer Convatec brand wafers because they are more pliable. Hollister wafers didn't work well on our baby.
This is a 30 mL locking syringe. We usually use a 60 mL.
(Click on photos for large view.)

The wafer has about an inch radius of tan sticky surface that needs to be cut to the shape of your infant's stoma and another inch of mesh tape. It also has a clear plastic disc on the top-side onto which we stick the bag. The bag has a sticky seal that attaches to the plastic disc. The syringe fits right into the end of the bag and can be used to drain the stool without messes (just make sure to put the cap back on the bag when you are done).

Seven important things we've learned:

#1 Get all your stuff ready before you start.
#2 The site must be completely dry. If she stools onto her skin while we're changing her dressing, we start over.
#3 A cotton ball prevents her from shooting stool onto us and the wall. It can also absorb enough stool to prevent having to start over. We often go through 3-4 cotton balls per change.
#4 Heating the wafer is critical to a successful change.
#5 We always change her dressing every 72-hours.
#6 If possible, there are always two of us to change her dressing. One keeps her calm and helps organize and hand over supplies while the other does the work. If one of us is unavailable, we call a trusted friend.
#7 It's hard to change the bag when she's crying. A bit of sugar water at the end of her binky calms her right down. (It's not just us! They did it in the hospital!)

Here are detailed steps explaining how we change her bag and wafer:

1) First we take Bridgette's onesie and put it over her arms so she does not get in the way.

2) We then put a cotton ball on her stoma (intestine, this really helps in case she decides to let fly while we are changing the bag).

3) We cut out a hole in the wafer that is just a tiny bit bigger than her stoma. Ideally you should measure the stoma and trace an outline on the back of the wafer, but we have been more or less "eyeballing" it at this point.
On the left is a used bag/wafer. On the right is a new wafer with the hole already cut. You can see how the acid in the stool eats away at the wafer. Some people prefer bags with designs, like the Convatec koala bears, because the stool grosses them out. We like the clear bags because a) we can see through them to put them on properly, b) we can easily check her stool output, and c) this design has the cap-closure which is less messy for us to empty.

4) We put a hair dryer on hot and aim it towards the wafer while we do the next step. The wafer must be heated to be pliable and mold properly to her skin. Leaning the wafer up against a book or wall often helps.

5) While the hair dryer blows, we clean Bridgette's skin with a moist gauze pad, no soap. Baby soaps have glycerin and prevent the wafer from sticking.

6) Once Bridgette's skin is clean, we pat it down with a dry gauze pad.

7) When her skin is dry, we take the hair dryer, switch it to 'cool' and then dry her stoma area thoroughly for one to two minutes.

8) Once we are satisfied, we turn the hair dryer back on hot and let it continue to blow on and heat the wafer while we do the next step.

9) We place stoma powder on any problem areas on Bridgette's skin. The acid in her stool eats away at her skin, and the powder absorbs some of the ooze and helps her skin heal.

10) We remove the hair dryer and put stoma paste around the inside edge of the hole on the sticky side of the wafer (the part that will go against her skin).

The stoma paste is easier to handle if you put it in a medicine dispenser. Initially we were trying to put the paste directly on her skin, but it's like pizza cheese... really hard to disconnect from the dispenser. It's more accurate to place the paste on the wafer.

11) We make sure the wafer is not too hot, remove the backing, and place it on her skin around her stoma, checking that there are no wrinkles in the wafer. Hold this down for at least 30 seconds.

12) We remove the cotton ball and place the bag onto the wafer, making sure the plastic disc of the wafer is dry before putting the bag on.

13) We place a reusable heat pack over the whole area to be sure the wafer seals to her skin. Be certain the heat pack is not so hot that it burns your baby. (Disposable heat packs work too, but again, check the temperature.)

14) Finally, we put water-proof tape around the very edge of the wafer in the event that it leaks and to help it from popping off when she cries.

We usually give Bridgette a sponge bath at this point which can be done in less than five minutes. The water-proof tape helps make sure that the wafer does not get wet.

It used to take my wife and me 45 minutes to an hour to do a bag change and bath, and we burned through supplies - sometimes 5 to 10 changes a day. Now we can do a change in 10 to 15 minutes and a bath in less than 5 minutes. If Bridgette releases stool while we are changing her, it takes a little longer, but bags usually last 3 days.

*** Now that she is six months old and eating solid foods, we are using larger wafers and bigger bags with a gas vent. We are consistently getting bags to stay on for three days without leaks. ***

I hope this guide helps anyone who is frustrated with leaky bags and wafers for ileostomies. If you are struggling with a similar situation, feel free to contact us!

Baker's Dozen

13 weeks and, on Wednesday, 3 months in the world. Right on schedule Bridgette's outgrown all her 0-3 month clothing.

We had a great week.

Baby was good in class... as good as she gets anyway. My friend Emily took a couple of pictures of her sleeping on me. They misrepresent her general awakeness, but they're very cute. Babs usually falls asleep, finally, as soon as classes end.

We also visited BYU's duck pond, a park near our house, and two restaurants. She liked the duck pond best. It was full of commotion. And ducks.

Bri continues occassionally to play herself to sleep. Not often, but it happens.

Bri is laughing and smiling more these days. Here are some pics of her smiling for us. If you look at the second one carefully, you will see what an ostomy dressing leak looks like. We can smell it before we see it. Although it doesn't smell like a normal poopy diaper, it does smell rank.

Bridgette had to have three dressing changes this weekend, two of them in the middle of General Conference.

This is how Bridgette fell asleep on Jeff during conference.

Jeff took this photo of us cuddled up watching conference.

Here is a picture of her stoma, uncovered. It bleeds pretty easily, and Bri is into grabbing it now. Her sharp nails pierce it easily, so we have to be particularly vigilant about keeping her arm wrapped up or held. The second picture is just because for some reason I thought she was adorable. Maybe she was being good. Maybe it was those big blue eyes.

In Kelly news, I was able to play volleyball this week -- what joy! I have few true passions, but volleyball is one of them. I could play 12 hours a day and skip meals to stay in the game. Unfortunately, given the status of my left knee, I had to prevent myself from jumping. But after a year in absence, it was still more fun than I've had in a long time. Also, I put on a pair of my pre-maternity jeans without using vaseline and a winch. I've opted not to wear them out of the house yet, but they button up fine. It felt good.

In Jeff news... Wait. Let me ask him. He says, "I don't have anything exciting."

Here is some duck pond video. It might make you motion-sick. Watch at your own risk: