Friday, April 20, 2012

Hirschsprung News

After seven weeks of silence, I intended to do a post that stretched around the world 3 times. I figured at least two of you would want to know about all the marvelous things we've done since I last wrote.

But I haven't had time.

So here it is in one loooooong sentence.

We (and by "we" I mean "Bridgette, Jeff, and/or myself, with or without friends or family, in numerous configurations") visited my hometown in Texas, started a business, met a famous author, got beat up on the playground (okay, that one wasn't especially marvelous), rescued two dogs, were finally promised fence re-installation by the company that tore up our yard 6 months ago, made friends with lots of local horses, took (with permission) hundreds of dollars worth of plywood from a destruction site, started building shelves in our garage with said requisitioned lumber, played with neighborhood kids, built with Legos and TinkerToys, played in the dirt, played in the snow, played in the mud, played in the sun, finally learned how to jump on a trampoline without crying, created a couple of iPhone apps, visited the Tracy Aviary, were once again promised fence re-installation by the company that tore up our yard 6 months ago, learned new stuff, wandered aimlessly, hung out with friends, worked-out, read books, saw Hunger Games, celebrated Easter, got haircuts, attended RadioLab Live, taught my last-ever class for my last-ever semester at BYU, partook in my first-ever weekend writing sabbatical, helped gory people up for a state-wide earthquake drill with over 900,000 registered participants, and (after much deliberation) decided not to host a team of Estonian Olympic ice-skating hopefuls at my house for a month.

We still don't have a fence.

(Don't worry, G & G Hoose, I still intend to write a separate post about our visit to Texas. But just in case it doesn't happen for a while, you've now received TWO full sentences in your honor.)


Having no more time to update you than that, you might wonder why I sat down to write at all.

There is a reason for this post. 

I started this blog because of Hirschsprung Disease, so that I could keep everyone updated on Bridgette's status and share information and tips with other HD parents. In fact, How To Get an Ileostomy Bag & Wafer to Stay On Your Baby's Skin is still our most consistently hit page. 

Over the last year, as Bridgette has been sick less and developing faster, I don't write about it nearly as often.

March 22, 2012

Bridgette & Lahila @ Tae Kwon Do

But that doesn't mean I don't think about it.
  • I think about Hirschsprung nightly with her dose of Sulfasalazine and at least four times a day as her insides gush into the toilet.
  • I think about it as we constantly watch and readjust her diet, and as we try so, so, so hard to get her the nutrients and calories she needs.
  • It's impossible to ignore when her belly growls louder than any belly you've ever heard and all the kids around her point at her and laugh.
  • I listen intently when moms at the playground talk about their kids having vomited that morning. I wonder who they are and if they're contagious and if Bridgette touches the same slide they did, will she end up hospitalized.
  • I still don't know what parts of her digestive tract are non-functional. How many skipped segments? Should we biopsy her tongue?
  • Her Hirschsprung couldn't be more obvious when she wakes with a flat belly each morning but looks like she's swallowed a basketball by the time she goes to bed.
  • Certainly, it crosses my mind with each cup of "juice" I pour to keep her easily-dehydrated body from drying out. She still drinks almost a gallon a day.

But overall, life feels mostly normal for us now, just as we'd hoped and a little earlier than we'd imagined.

There's a little boy by the name of Blake Bradshaw who, like Bridgette, has Total Colonic Hirschsprung Disease (TCHD). Like Bridgette, he was given an infant ileostomy. They were both born in the United States in July, though Blake came along 3 years later. Like Bridgette, his mom and dad intended to do a pull-thru procedure after his first birthday. And just like us, they expected that he would eventually live a fairly normal life.

But I'm sorry to say that Blake died from TCHD this morning at 5AM. He was being cared for by great parents and great doctors at a great hospital, but things got complicated, as they so often do with Hirschsprung. He would have turned one-year-old this July. 

After performing a series of unusual procedures to try to save him, last night Blake's mom, Amber, announced via Facebook HD Support Groups that every hour was a victory.

I didn't sleep well last night, but I'm sure they did not sleep at all.

Two very different outcomes for our children. I know a lot of people ask the question, "Why me?" But so often in life I find myself asking, "Why NOT me? Why her child and not mine?" 

Neither question has an easy answer.

Of course I cannot express how grateful I am that Bridgette is doing well, but please spare a thought for Amber today.


Tammy and Alvin said...

I am one of the "at least two of you" who have wanted to know what you've been up to. Fun to read the short synopsis and can't wait for the more detailed version.

I have certainly been pondering the precious miracle of life and its fragile nature over the past two days. When Clarissa had her first poopy diaper, I actually thought of you and Bri. Thanks for the post and important reminder. My heart aches for Amber and her family.

Anonymous said...

As a parent of a TCHD and married to one as well, my heart ached to read this!! I too was thinking my son would be a normal boy after his pull-through, but as you said I think about it daily. Almost exact same as your daughter. He will turn 4 this May. It could have easily happened to us. :(

Megan and Deacon Green

Brenda Johnson said...

So happy to see a blog!! And I've been thinking of you often since your post on FB yesterday morning. I'm so sorry to hear about Blake and my heart goes out to his family. I hope that the doctors can continue to find more success and help all of you that have so much to go through with your special little angels.

As Bridgette's Auntie - I'm grateful to see her sweet smile and watch her run and play with all the other kids.

Each of these children were sent to very special parents. May Heavenly Father bless each of you and these special kids!

Smith Family said...

Oh Kelly, I'm in tears and I'm sure it's not just due to my emotionally unstable pregnant state. I'll be praying for Amber and her family. Love to you and your sweet little B!

Lore said...

I have no words except, I am so sorry.

Alisha said...

Our families prayers will be with them. Bridgette is amazing!

April said...

Oh I am so sorry to hear such tender words about your sweet friend and her son... I know how close it is to your heart. I'll be praying for you both. I love you and I am so delighted that I got to meet you even for a few moments...

Heather said...

Hi I’m Heather! Please email me when you get a chance! I have a question about your blog. HeatherVonsj(at)gmail(dot)com

mjj321 said...

Thank you Kelly for your tender expression of Bridgette's accomplishments. One cannot look at her and not feel God's love. You and Jeff are amazing parents! Heavenly Father knows where to put his beloved little ones, no matter the heartache that may follow. Angels will attend...Grandma J