Wednesday, April 11, 2012

overdue update.

so i've been extremely overwhelmed here with lots of things, and didn't even feel like writing.  so i'll fill in as much as i can.  last week we were given the hope of heart surgery monday, only to have it dashed by a fever spike friday night.  the fever hasn't come back since, and was likely caused by atelectisis, but it killed all possibilities of monday being surgery.
over the weekend the belly distention that has come and gone, returned.  new doctor, and the return of the thought of hirschsprung's disease (i'm too tired to explain it).  so i talked to the surgeon multiple times about what steps to take, and why.  monday morning shilo had a barium enema.  this is as fun as it sounds, and i made a promise to shilo, that when she gets better, i would bring her back and point out the people who did that to her.  findings were indicative of hirschsprung's.  tuesday morning they did a suction rectal biopsy (also as fun as it sounds).  we were told she would likely have an ostomy tomorrow (thursday) but they would give us official results today.
turns out she does not have hirschsprung's disease.  she is allergic to....something.  the blood she's had in her diapers, the checking for c-diff, and the constant  talk of her 'distended belly' that all seemed pushed aside, now have answers.  we don't know what she's allergic to yet, a med, her formula, but something.
however, an allergy will not keep us from being able to do heart surgery, where hirschsprung's would have meant surgery tomorrow, and then at least a ten day wait before they would do anything with her heart. 
abigail is here with me for a few days to: give jason a break, get some mama time in, and for mama to get to enjoy her big girl as well.  it means i can't spend quite as much time at the hospital since big girl needs a nap, and to go to bed at a normal time.  and as hard as that is for me, i know that abigail needs me to.  that's really the hardest part of all of this is feeling like no matter what i do, one of my daughters is getting the trade off.
last night as i was in bed, i was praying.  i don't feel angry or bitter, but was having a hard time.  the prayer was more of a conversation that went something like this.  'we have tried really hard to be faithful to what you have called us to.  i don't think that following your calling always means something easy, pretty, or clean, but we could really use a little break.  not just for us, but for our little who already has so many other things going on.'

i didn't really ask for anything specific, just shared how overwhelmed i was with all of it, and how much i just wanted something to go great right now.  a friend asked me if i wanted prayer that it wasn't hirschsprung's (yesterday) and i explained why it seemed that it already was that, and we just needed the rest of things to go smoothly.  oh, how quickly my hope has been lost this last week.  and honestly, this win, even if only small, was an immediate reminder of how much God does want to know the desires of our heart, even if they feel impossible, and not worth praying.  and a reminder of what He has tried to teach me over and over: HOPE.  even when things seem impossible, and hard, and like there is no way to change anything. 
and lastly, i will leave you with two pictures from Easter sunday. 

both my girls in their easter outfits.

papa holding shilo for the first time in seven weeks.


  1. Yea for small gifts, no matter how small.

    Big hugs!

  2. I'm glad your girls got to be together for Easter.