a little and a lot

Thursday, April 09, 2015

Those Sweet Cheeks

I'm interrupting the crazy stories of how God worked to write a little "everyday" post of what life is like on a daily basis with sweet B.  Hoping I can satisfy some curiosity as well as educate a little on how best to pray for us and treat Brooklyn when you see us out and about.

First, I can't remember if I ever told you what "biliary atresia" is!  So for those of you who haven't asked Google yet, my most simple explanation is this: Everyone has ducts that lead from the liver to the small intestine.  The liver produces bile, and the ducts remove it from the liver and dump it into the small intestine.  This is what makes your poop brown.  (Gross, I know, but now you have your fun poop fact for the day!  I know you needed one of those, right?)  A person with biliary atresia (BILL-ee-airy uh-TREE-shuh) was born with ducts that are blocked, so the bile can't make it out of the liver.  Bile is toxic and causes liver damage and ultimately liver failure.  Sometimes a surgery called the "Kasai procedure" can be done, which reroutes the flow of bile and extends the life of the liver, but it needs to be done early enough in life (by 3 months old) to keep the liver from sustaining significant damage.  Without a successful Kasai procedure, a child cannot typically live past the age of 2 years old with biliary atresia.

So, there's my non-medical and probably not 100% accurate explanation.  But now you know.  {Cue shooting star with rainbow.}  In terms of Brooklyn's little body, she was given the Kasai procedure at around 4 months old, which is too late.  Her liver was already damaged and thus the older she got, the more that liver started shutting down.  We found out about her when she was 9 months old.  She weighed 10 lbs.  (The liver processes certain fat-soluble vitamins like A, D, E, & K, and they're needed for proper nutrition.  Since children with liver damage/failure cannot process those vitamins, they often have trouble putting on weight and getting the proper nutrition to help their little bodies grow.)  She had a big "buddha belly," caused by acites (ah-SITE-ees, which means there is fluid in her belly as a complication of liver failure), but her chest, arms/hands, legs/feet, and little booty were so, so tiny.  The doctors in China gave her a 50% chance of living 4-6 months.

PS: We are now at 6 months from that original prognosis!  {High five!}

Since October, Brooklyn has made it up to 15 lbs and grown 1 inch taller!  Yeah, girl!  And her development in all areas is just flourishing.  We're so proud of our Little Biscuit!  Lots of people (including us) are so surprised when they first meet Brooklyn, because she is tinier in person than she appears in pictures.  She has these sweet chubby cheeks and that big buddha belly, and they don't realize that her feet don't even fit in 3-6 month-size shoes!

(Her latest trick: saying "cheeeeeese!")
So, a day in the life with Brooklyn looks like this:

7-8a - She wakes up and we give her 3 vitamin supplements: a water-soluble combination of vitamins A, D, E, & K, a water-soluble version of vitamin D, and a water-soluble version of vitamin E.

When she first came home, she was gagging on pureed foods, but now she can feed herself finger foods and loves being fed with a fork or spoon.

More poop talk: B's poop is grey/white because it doesn't have bile in it.  Don't worry, it still stinks to high heaven.  ;)

9:30a - Brooklyn drinks a bottle of formula and usually takes a morning nap.
Normally, a 15-month old wouldn't still be drinking formula, but B drinks Pregestimil, which is specially formulated to be easier to digest for babies with fat-soluble digestion issues.  It's also $40/can at retail cost.  {Cha-ching!}  Totally worth it for the weight she's able to continue putting on!

11a - B wakes up, and we eat lunch and play.  She loves pulling up and cruising, she'll obsess over anything paper or plastic (or iPhone--ha), and she adores music.  (If she meets you, she will ask via hand motions if you know "The Itsy Bitsy Spider.")

1-2p - Time for another bottle and another nap!  I call the two-nap phase "nap jail" because you can only really get out of the house between those two naps.  But look at all the napping, uh I mean blogging, oops I mean housework I can get done!

2:30-4p -B wakes up and it's time for more playing!  We usually go pick up Rhet from school around this time.

5p - Dinner time for everyone--Brooklyn eats little bites of what everyone else is having.  Plus Annie's Cheddar Bunnies: her one true love.  ;)

6p- Brooklyn loves splashing in the water at bathtime.  She drinks one more bottle before going to bed around 7p.  I usually give her Benadryl, because hightened amounts of bilirubin (a result of bile) in the blood make your skin jaundiced (as you can see) and itchy.  (B's bili level is up to 23.  A normal level is 0.)  Especially when she's tired, Brooklyn scratches and scratches, and she will often scratch herself so much that she starts bleeding somewhere.  The Benadryl often helps alleviate some of the itchiness.  And thank you Old Navy, for making the only pj's B wears these days because the sleeves fold over and cover her hands in her little 6-9 month jammies!

10:30p - We wake B up to drink a bottle right before we go to bed.

2-4p - On a "good" night, B usually only wakes us up once to drink a bottle in the middle of the night.  (When we first came home, we were on "ever hour/every 2 hours" duty.  {Zzzzzzz})

Also, every minute of every day, have our phone turned on and nearby, because once we get "the call," we'll drop everything and follow our "Liver Call List."  We have an hour to return the call if we miss it, and we have 24 hours to get there after we receive it.

After transplant, Brooklyn will be in-patient at the hospital for about 2 weeks (barring complications) and then we'll stay in the Chicago area for another 2 weeks (totaling a month) so they can keep an eye on her.  Then, we'll come back every week for a month for check-ups, then every other week for a couple months, and then eventually once a month until we reach the one year anniversary of the transplant.  So far, we love Chicago, and we love Lurie, so we hope it stays that way!

One more thing: before transplant, we have to be diligent to keep Brooklyn from getting sick, because she can't be cleared for surgery if she is.  (And because transplants are so time-sensitive, that could cost us a liver!)  Post-transplant, she'll be on immune-supressing medications to keep her body from rejecting her liver, so it will be very very easy for her to catch illness.  That being said, we are being trying to be super vigilant about not exposing her to illness and germs (short of putting her in a bubble).  EVERYONE wants to touch those sweet cheeks of hers, but we're asking everyone (kids AND adults) not to touch her face or tiny little hands.  Thanks for using your super-human willpower!  (Because you guys, she's just so dang adorable!)

Thanks for praying for her and for us.  God is so good to us, and we are enjoying this sweet post-home/pre-liver time to grow our attachments nice and strong.  :)


Adopting Rhet: Click on the timeline above to read more