Thursday, June 30, 2011

Spent

Mommy and Daddy are tired.

We've spent the entire day trying to distract Sadie from the realization that she cannot eat or drink.  She also can't leave the room because she is on monitors.  Chris and I eat in shifts so she can't see us.  The last 72 hours have been filled with reading lots of books repeatedly, throwing and picking up toys, watching PBS, intermittent napping, and explaining why she can't have a drink when she asks.  Her IV is infusing in her foot, so she is also bummed that she can't walk.  We're hoping and praying that the surgeon, Dr. S., will be in tonight and start her on clear liquids.

The view from our room is spectacular (I'll post pictures later) and we're right above the helipad, which I initially thought would be cool.  The tower is pretty well soundproofed so they don't make a lot of noise with their coming and going.  There is one thing I did not take into account, however--the strobe lights that flash all night long.  We can mostly block them with the blinds, but not completely.

We did get a break today when Chris' mom and grandma came to visit.  We got to sneak out of the room for a few minutes and get some lunch from the fantastic deli.  I think it gave us just enough of a charge to make it to bedtime.

Please pray that Sadie will start a diet tonight, advance tomorrow, and go home.  My dad is having surgery on Saturday and I'm really hoping to be home in time.  We appreciate the prayers, e-mails, calls, and texts you have all sent us!

Wednesday, June 29, 2011

It never gets any easier...

...handing your child to a complete stranger with only their word that they will, "take good care of her."

After four surgeries, we may be pros in the physical sense.  Emotionally, not so much.  Sleep deprivation is definitely a factor in our emotional state (Sadie pooped and puked all night).  But it's also very, very hard to look at your baby the night before surgery with the realization that you are putting her through surgery again.  While I take great pride in the fact that Sadie is exceptionally cooperative with having her belly prodded, lung sounds examined, and blood pressure taken, it's very disheartening to realize that this is normal for her.

Surgery went...okay.  I am, by nature, the kind of person that wants only rainbows and butterflies.  Marginal or bad news devastates me.  So while the report wasn't bad, it wasn't glowing optimism, either.  We came in for a simple prolapse repair with the realization that some scar tissue may need to be removed.  Instead, Sadie had a partial redo of her repair from August.  I'll try to maintain her dignity here, but things had to be relocated a little bit.  And she did require removal of some scar tissue from around the area where her colostomy was taken down.  Our surgeon assures us that this will make things better, but she'll have to go another day without eating or drinking and our stay will be longer than anticipated.  My mind only tells me that things could get much, much worse from here.  We may not have had an ideal routine before, but we had a comfortable routine.  Now we have to start over.

After our families went home, I couldn't stop crying.  I tried, I really did.  I kept trying to keep things in perspective.  Sadie doesn't have some incurable, inoperable disorder like so many other families we're here with.  Sadie has the hope of living a normal, happy life.  But the tears still came.

One of the countless wonderful things about Riley Hospital for Children is that there are 2 Ronald McDonald Houses.  One is in the building and one is across the street.  So, we can go any time and get a free meal in a comfortable, relaxed, and home-like setting without leaving the hospital.  Many families who have been Riley patients will come back and serve dinners at Ronald McDonald House.  Tonight, a group served a spaghetti dinner.  They had a pad of paper laying on the countertop and asked people to write down their prayer requests.  As I read over the list before adding my own request, the tears came again.  Pray for my daughter who has a brain tumor.  Pray for my son--they don't know what's wrong with him.  Pray for our family.  I ate my spaghetti while trying not to make eye contact.  But before I left, I asked one of the servers who among them had been at Riley as a patient.  None of them had--they just serve a meal every fifth Wednesday.  I said, "you don't know how much this means to us.  This is our safe place.  Thank you."  I turned to walk away and one of the women literally chased me down so she could pray with me.  Wow.  I may not have confidence in my heart that things will be fine, but I am confident that Sadie is being prayed for--by those close to us, by our church family, and by complete strangers.

Tuesday, June 28, 2011

Headed to Indy

Sadie is being admitted today for her prolapse repair.  Today is bowel prep day (yay) and surgery is tomorrow.  She should be released the following day.  I'll post more updates later.

Monday, June 27, 2011

Wierdest Date Ever

Saturday, Chris and I spent the day together without the girls.  Wanna know what we did?

We went to a CAFO conference.

Yup.  A confined (or concentrated) animal feeding operation conference.  Why?  We have 5,100 sows living 1/2 mile from our front porch.  We spent the day hearing about the adverse social, economic, and health affects of these massive factory farms.  This is an issue we have been deeply concerned about ever since our "neighbors" moved in (we were here first).  It was nice to find some like-minded people locally, and overall it was a great day.  Plus, we got to feast on a nice selection of non-CAFO, all organic meats, fruits, veggies, and cheese.  I'm actually considering starting a second blog devoted to the topic of industrial agriculture.  Maybe someday...

Tuesday, June 21, 2011

Pics and a Video

Enjoy!




Daddy is a huge Yankees fan.  Let the brainwashing begin...


Visiting the Fort Wayne Zoo.

"Daddy, is this really necessary?"

Sadie has started using Play Doh as part of her occupational therapy.  Watch the video and you can see how much she loves it!


video

Tuesday, June 14, 2011

It's a good thing my bag is always packed...

...because I never know when one of Sadie's docs will spring something surprising on us!

We had a follow up with the surgeon today.  Sadie has had a prolapse since her repair last October, but due to some recent minor symptoms Dr. S feels it's time to repair it.  He said we may be scheduled before the end of the month.  Good thing we've been through this before.  I have our insurance caseworker on speed-dial and we're already precertified.  We're just waiting for a date.  Sadie will have a 3-day hospital stay if all goes well.

I'll update when I know more.

Saturday, June 11, 2011

Prayers Needed

Please visit the Hilliard Family blog and send your birthday wishes to Eithene.  Please be lifting the family up in prayer during the difficult days and weeks to come.