Wednesday, August 27, 2008

Lucky Seven

This week, the seventh week of Bridgette's life, Grandma Hoose tipped me on a Facebook support group for families who have kids with Hirschsprung's Disease. I read entry after entry by parents whose kids couldn't gain weight. It reminded me how lucky we are that Bri continues to become a regular little chubster. Today she topped at 10 lbs 12 oz. She definitely feels that heavy when she falls asleep in my arms.


(A friend saw Bri this week and mentioned that she is much smaller than she expected given all the weight-gain discussion on the blog and the close-ups I typically post. So, here is Bri compared to her bear, a bear that was introduced to her during her second week at the hospital when she wasn't allowed to eat and was losing weight every day. You can see that Bridgette is still a tiny baby, just a... bigger... tiny baby.)

Speaking of sleeping, Bridgette is sleeping through the night after only 6 1/2 weeks! The timing couldn't be better considering school starts for me on Tuesday.*

Bri had a busier week than normal and has started to see the world. She attended lunch at New York Burrito where she was mostly fascinated by the ceiling. She went to a piano concert Friday and listened intently to 2 hours of music. She then hung out at a family birthday party on Saturday and "met" most of her cousins (some of whom are pictured below.) On Monday she helped deliver thank you notes for the meals people brought us when we finally made it home. On Tuesday she traveled with me to BYU to clean out my MPH desk in preparation for moving to the second-year lab.**

Today we are staying home and trying to line up her eating/sleeping schedule with my class schedule.***

Aunt Davina

Grandpa Johnson

Grandma Johnson

Cousin Ellie and Her Famous Shoe Crawling

Cousin Matthew

Cousins Lili & Samantha

Bridgette with Cousin Tyler - Friends Already!

I'm excited to report that Bri has also started babbling. She strikes me as an observant soul, judging by her piercing gaze and ability to listen carefully to voices and music. However, until this week she showed no interest in vocalizing herself, besides an occasional cry. On Sunday she sat in her swing and said, "Aaaah," and "Ooooh," and "Aeii" for about an hour, intermittently interspersed with sighs. She's been gracing our ears with similar sounds since.

Lastly, although it's not too hard to get Bri to smile for the camera (she likes the camera... it sparkles...) I've realized that we have not accurately represented her various moods. For the record, she spends about 90% of her time asleep and playing calmly. The other 10% is split between really happy (1%) and really mad (9%). Her really mad cry sounds like a slow machine gun, "A-kak-a-kak-a-kak-a-kak!" Strangely, even this has its charm.

"A-kak-a-kak-a-kak-a-kak!"

*Eeeeeeeeeeek!

**Yeah. She cried the whole time.

***Please see prior two endnotes.

Tuesday, August 19, 2008

Now We Are Six Weeks

For those of you following (or occasionally browsing) this blog, I think you should expect about one post a week from here on out, unless there is something critical or wonderful to share that just can’t wait a whole seven days.

Here’s the news for week 6 of Bri’s life:

1) We have officially gotten 3 separate ostomy bags to adhere to her tummy for 72-hours each!

Above: Bri's bag after almost 72-hours. If you can believe it, we had just emptied this one. They get pretty grungy. After 72-hours we change the dressing no matter what because some toxic waste will have begun to creep under her wafer and hang out on her skin.
Below: Bri's bag after a fresh dressing change.

2) Bridgette grew two inches and put on about another pound this week, topping off at 9 lbs. 15 oz. this morning. What a ziggy baby.

3) We have almost finished reading the entire A.A. Milne series together during feedings. “Winnie-the-Pooh,” “The House at Pooh Corner,” and “When We Were Very Young” are behind us, and we just moved on today to “Now We Are Six.”

4) Baby is learning to smile at us a bit more. It’s still not a consistent reaction, but it’s lovely when it happens.

5) Bri may have had her first small tummy bug yesterday. It’s hard to tell due to her ileostomy, but her poo was extremely watery, and she also vomited. She had a harder time urinating too, her diapers being mostly dry. We’re keeping an eye on things since dehydration will always be a major concern, even on healthy days. She already seems better today though.

6) Bridgette sometimes laughs in her sleep. This is hilarious and dang cute.

7) I’ve decided to try to finish the second year of my graduate degree, taking babs with me to classes. School starts in two weeks (yikes!) and if it doesn’t work, I will defer until who-knows-when. Although the prospect of being both mom and student terrifies me, I don’t suppose it will get any easier to finish later.

8) I got a clean bill of health at my 6 week postpartum doctor's appointment today. Yippee! I can exercise again for the first time in a year! (Except that my ACL is still torn, so I'm relegated to cycling, swimming, and weights.)

Monday, August 18, 2008

Babs

We often call Bridgette "babs" or "babby" because of a picture her cousin, Grace, drew for Bridgette while she was still in my tummy. We love it, and framed it to hang in Bridgette's room.

Thus the nickname...

Wednesday, August 13, 2008

Weighing-in at 5 weeks...

Because of Bri's early weight gain problems and potential malnutrition issues, Grandma Hoose bought us a baby scale while she was here. I weighed Bridgette yesterday and figured it was a fluke. But, Jeff weighed her again this morning before she ate and after a diaper/bag change, and the surprising results were confirmed.

Baby is 9 lbs. 1 oz.! That means she has gained a pound in the last 4 1/2 days!

We assume her growth rate will slow down at some point, but we don't mind this spurt of chub one bit. Of course, she's still small, but she's big compared to herself two weeks ago.

Bri is getting progressively more attuned to her surroundings as well as more familiar with the differences between night and day. A typical night now has her sleeping 3-5 hours between feedings. When bedtime begins and ends is less predictable.

During daylight we enjoy the following activities: reading, eating, singing, eating, crying, eating, dancing, sleeping, sitting outside under the globe willow, eating, and eating. Recently she's been experiencing some Tummy Time too. I write "experiencing" because I'm not sure "enjoying" is the correct word yet.

~Tummy Time~

She's decent at lifting her head and legs for one so young. She can turn her head right and left while lying down and can push her toes into the ground and lift her bum.

Monday, August 11, 2008

More Photos

Woo-hoo-hoo! Here is the link to look at, and, if you choose, to purchase photos of Bridgette: http://perryphotography.instaproofs.com/.

If you want Marcene to whip up something special from one of the prints, you can contact her here: http://www.perryphotography.us/contact.html.

Happy browsing!

Saturday, August 9, 2008

Photos!

Our friend, Marcene Perry, came to our house today to photograph Bri. She's just starting a photography business, and she did a great job! Here is a small selection of the 400 or so pictures she took. I'm really excited to see more later, but for now, please enjoy a short slideshow by clicking here.

Prints will be available to order in about week. We'll post again when they're ready.

Friday, August 8, 2008

First Pediatrician's Visit

Bri's "well-baby" pediatrician's appointment kept getting moved back because she wasn't a well-baby. But! We finally visited today, exactly one month from her birth day. The doctor chatted with us for quite a while initially, before the examination, to be sure we are all on the same page when it comes to Bridgette's long term care and special needs. Her actual examination revealed that she is strong and kicking.

The techs also measured Bridgette's head circumference, weight, and length in order to check her percentiles. At 37 cm., her head circumference measured at 50% (meaning it's completely average), while her weight and length were unsurprisingly on the small side. She's grown 2 inches since birth to a whopping 20" long... which is actually quite short. In fact it correlates to the 10% mark (meaning approximately 90% of babies her age are longer.)

The cool news is that Bri is now about 8 lbs! The doctor's office got an "official" weight of 8 lbs. 3 1/2 oz. However, I happen to know that she had a wet diaper and had also just drunk 1 oz of milk. Her weight-for-age percentile is 25%. Given that she lost weight every day for the first two weeks of her life and only maintained that weight (6 lbs. 6 oz.) in the third week, it basically means she's gained over a pound in the last week and a half!

At this very moment, Bri is lying on top of daddy's chest as they both take a (several hour) nap on the couch. It's fun to watch them spending quality time together. As you can see below, napping isn't all they do...

Bridgette's first computer lesson with Jeff.

As funny as this is, the bright screen really did capture her interest.

I love the photos where she's craning her neck to see things. So adorably small!

Thursday, August 7, 2008

Check-up

This is our cute baby. We like her.



Bri had her post-surgery check-up yesterday at PCMC. Ma Johnson helped me take her back up to Salt Lake City. Dr. Black looked her over and said she's doing fine. We talked about the time frame for her ileum take-down (he suggested it could happen as early as the first few months of next year, but the real determining factor will be her weight-gain/size), and he drew diagrams of the procedure for me all over the paper on the exam table.

He also drew a picture of her abdomen, diagramming her future scars, once they've healed. There will be one long scar going through her belly button from her pelvic bone to her sternum, and one short horizontal scar to the right of it, where her stoma is now. The stoma hole will not require a skin graft. Dr. Black will just pull the skin taut over the hole and stitch it up. So, in actuality, her scars will look just like they do now! Only, instead of a stoma, she will have none.

We discussed the issue of future diaper rash. That horrible bile-y acid that is a part of her stool (and causes her stomach skin to breakdown and bleed almost immediately) will be sitting on her bum after the take-down. Dr. Black said that there is almost nothing we can do, and she'll simply have irascible skin until it hardens to the effects. He suggested smathering Desetin on her bum in a thick layer, like icing on a cake, every time we change her... to lessen the pain as much as possible. And once again we sigh, "Poor baby." But, we'll handle that when it comes - best not to dwell on it now.


Bri's new wafer has adhered to her skin without leaks for 36 hours now. I'm nervous that it will spout a leak while Jeff is gone at work. Then I have to decide if it is bad enough to risk trying to change it by myself, having it not seal properly and thus leak again sooner, OR if it's worth risking a little stool sitting on her during the day in order to have two sets of hands to fix her up once Jeff is home.

We have discovered that four hands are really quite necessary for a successful wafer change. One person does most of the work while the other person pins Bridgette's hands and succors her with sugar water - a sweet treat to counter the pain and discomfort. We've also discovered that Bridgette is most cooperative if we split her feeding schedule down either side of a wafer change. She gets half her meal before, so she isn't cranky with hunger on top of all else, and half after, so she is additionally soothed post-trauma.

At some point, I assume I will post a blog entry that has nothing to do with Hirschsprung's repercussions and more to do with some amazing cognitive or physical development in Bri, or some fantastic date that Jeff & I go on. Until then, it continues to consume a lot of our time and thoughts.

Here are two pics I just received from Grandma's flash drive of the Hoose's saying goodbye to Bridgette on Monday. We look forward to their next visit, be that when it may.

Tuesday, August 5, 2008

Four Weeks Old Today

Happiness #1 - At last weighing, Bri was a few ounces over her birth weight. Go baby!

Bri is zonkered on top of the scale in this photo. She liked the very soft blanket under her.


Happiness #2 - When we found the sample wafer that adheres best to Bri's skin and allowed us an almost 48-hour no-bag-change stint, we unfortunately only had one such wafer. We ordered more, and they arrived yesterday! We put one on Bridgette last night and have begun the countdown.

Other News - Although we haven't quite got a routine schedule yet, we are adapting to a new routine. Every family member has a role.

~Bri is the cute, helpless baby who tells us what she needs and when she needs it.

~Jeff is the good man who works during the day to provide money and insurance. At night he turns into the superhero who empties Bridgette's bag and changes her nappy three to four times every night (approximately 11 p.m., 2 a.m., & 5 a.m. - give or take an hour or two), brings her to Kelly for feedings, then woos her to sleep again when feedings are complete.

~Kelly, as fate would have it, participates in every feeding... often for hours at a time. She moonlights as mommy during the day and thus does everything else from 10 a.m. to 6 p.m.

~Chewy is the shepherding dog who sniffs things, guards things, frenetically greets all visitors and is generally alert. If I haven't heard her, he lets me know when the baby is crying.

~Piper is the silly dog who enthusiastically barks at all visitors and eats poopy ostomy bags out of the trash in her spare time. We didn't know how strong her attraction to poopy ostomy bags was, really, until she vomited one outside yesterday. Very gross, but we still love her.

Mom & Bridgette make faces at each other. They're both hanging out in their new PJ's. They do that a lot these days.

In other news, my parents left yesterday, to the sadness of all. Jeff and I were able to adequately handle the last 19 hours without them, but you'll notice I know how many hours they've been gone. I'm extremely grateful they were here to help us adjust to our new responsibilities and to spend time with their special new granddaughter. In their absence, I'm sure I'll be calling out for help to Jeff's nearby family members and our neighbors a lot more.

A Grandma's-eye-view of Grampa Hoose and Bridgette taking a snooze to the dulcet tones of Beethoven's 5th Symphony.

Sunday, August 3, 2008

Blessing Day

Thanks to everyone who attended or participated in Bri's blessing and related festivities. It was a fine day.

Today was the first time Bri was introduced to the public. She was the perfect baby and slept through her blessing. Giving her a bottle just previously seemed to help.

Bridgette's blessing dress was worn 53 years ago by Grandma Hoose when she was christened at Bosworth Road Presbyterian Church in Ohio. The baby blanket was purchased many years ago in Bethlehem by a friend for Kelly's first baby.

Grampa Hoose with Bridgette. The ribbon on her wrist is securing a bracelet made for Bri by our good friends in Wisconsin. The bracelet slipped off without it since her arms are still so tiny.

Grandma Hoose dressed Bri this morning, paying close attention to details. Bri's almost always quite satisfied to sit in Grandma's lap.

Grandma Johnson enjoyed a bonding moment this evening in the great outdoors with her newest grandchild.


Aunt Brenda loves to cuddle babies. Bri felt very secure in her arms and fell right to sleep.

Saturday, August 2, 2008

Sunday Activities

We would like to invite family and friends who wish to come to our house this Sunday (tomorrow) evening to visit with each other and catch glimpses of baby Bridgette. She is very vulnerable to sickness and infection, so we probably will not be passing her around much. Since it will be hot out, we suggest coming around 7:00 p.m. We will kick everyone out at 8:30 p.m. :)

As Kelly previously mentioned, this will be a bring your own everything affair (including blankets, chairs, etc.), although we will provide lemonade to drink. Chewy and Piper will remain inside, so don't worry about them licking you to death.