her WHOLE face.

notice anything different of this picture of shilo taken this morning?  that's right, she is no longer breathing through a tube in her throat!  words can't begin to describe the joy we feel this sunday morning!

today.

*somebody* totally rocked open heart surgery.  shilo is doing AMAZING!  her sternum was closed tuesday afternoon.  she is pacing on her own.  her vent is being weaned, and we have even heard talk of possible extubation in the next few days.  she is doing amazing.  the biggest prayer needs we have for her now is coming off the sedation meds she's been on for two months.  it can be a rough withdrawal (even with the ativan and methadone to help).

i also wanted to share a story with you.  since i've been here i have met lots of other people.  some of them  have affected me positively.  some of them i have hoped to not run into again.  one of the people i met is another mom who's son had a stem cell transplant.  there are lots of details, but the gist of it is, he got sick a couple of days ago, moved to the icu, and they are preparing to say goodbye to their four year old son.
my heart is breaking for them.  i can't begin to imagine. so tonight, please spend some time praying for their family.  in moments like these my heart cries out 'come Lord Jesus, come!' 

today was the day.

*i want to start with a disclaimer that this post will have pictures from today.  they may feel graphic to you.  if you can't handle graphic, you have been warned.*

shilo six days before we were admitted.

shilo when she was first admitted and intubated.

shilo this morning before surgery.

all of shilo's pumps.

post surgery.

post surgery.

post surgery

post surgery

surgery went well.  there are lots of technicalities with it, but i'll try to keep to the basics.  shilo had three holes, instead of the two that are common in an av canal.  so she has three patches.  she also has another defect called cor triatriatum that we knew about but weren't sure if it would need repaired because the membrane wasn't all the way acrossed.  but apparently once the holes were closed, it would have grown closed as well, so they removed that membrane.
she also has pulmonary hypertension (very common with an av canal as well) and so she is on nitrous oxide to help bring the pressure in her lungs down for now.  they closed the skin in her chest, but not her sternum to make certain that she would pace her heart by herself (if not they will just put in a pacemaker) and to give her belly some time to get rid of some of the air before they close her completely.
for that reason she is on meds that paralyze her for now.  she will come off of those, but still be on her sedatives once the sternum is closed.  and she can come off of her sedatives once she is ready to be extubated.
so there's all the medically talk.  jason and i are doing really well.  we cried when we handed her off.  we spent about nine hours in a waiting room before we could come back and see her again.  the nurse came every hour to update us and tell us how things were going.  we felt incredibly peaceful all day, and even seeing her afterwards wasn't as traumatic as we thought it might be.
the doctor said he really thought shilo would have a rough first night with lots of ups and downs.  and while the night is by no means over, she has been stable as can be.  we are just continuing to pray for a very fast recovery, but are so grateful tonight for an amazing surgeon, great nurses, and technology to make this all possible.
also, after being here for two months, people start to know you.  i can't even count the number of doctors, nurses, and r.t.'s who stopped by today to tell us how glad they were she was having surgery, and ask how she was doing (and just to see her).  abigail's pulmanologist has stopped by multiple times, and has even asked how jason and i are doing with all of this.  so while there have been some frustrating things while we have been here, the overall tone has been one of being well taken care of, and our little being in great hands!!

open heart surgery.

they came and drew labs tonight, took an x-ray, the surgeon came by.  tomorrow is officially the day.  shilo will be getting her heart fixed.  we are both ecstatic and nervous all at the same time. we will take all the prayers in the world for our sweet little tomorrow.
for tonight, we all took turns holding her, singing to her, and praying over her. 

fevers.

shilo is back on for getting to have heart surgery in the near future.  the only issue with that is she's spiked a fever the last couple of days.  all her cultures are coming back negative, which we are glad about.  we will have to spend a few days fever free before they are willing to fix her heart.  so i'm asking everyone, everywhere, to please join in praying that the fever would break and stay gone so our little can get her heart fixed!

on being strong.

my name is andrea, and i'm not strong.  sometimes, i take the steps, instead of the elevator,  so i have somewhere to cry by myself.  other times, i stand over shilo, rubbing her head, and letting the tears fall.  every sunday, as jason and abigail wave goodbye, i shamelessly stand in front of the elevator with tears streaming down my face.
yes, i am capable of taking care of my children, standing up for their needs, and being there for them.  but the strongest thing i can think to do, for my children, is teach them that it's okay to hurt.  it's okay to admit that this time in our life is hard and it sucks, and we can cry about that. 
i hear family after family here say, 'you have to be strong, for your child.'  and i wonder what that even means.  absolutely i will be here and stand up for what she needs, and for her to get the best care possible in every way possible. 
but for both of my daughters, i would much rather them learn that they don't have to act tough.  sometimes life is hard.  and sometimes the strongest thing to do is stop being so stoic, and fake, and admit the weakness.
maybe i'll think of something witty to say to the next person who tells me to be strong.  or maybe it will be at just the right moment, and instead of saying anything, i will stand there, and cry.  because sometimes, crying, seems like the only strong thing left to do.

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.