Monday, February 21, 2011

Updates from Home

We've been home for over two weeks now, and I've been horrible at keeping everyone updated. 

I'm going to save pictures for a future post when I have more energy, but rest assured things are going fine.  Figuring out our "new normal" will be a process.  We will spend a number of months finding what diet works best for Sadie, what activities she can and cannot tolerate, what she will and will not be capable of.  Walking out the front doors of Riley was very bittersweet.  It was like bringing Sadie home for the first time.  She is a new, whole person.  There's no "next surgery" to plan for.  There's just--life.

Elena won her grade level and school-wide spelling bees last week.  The county spelling bee is in three days and the regional is this weekend.  It will be her 3rd time spelling at the regional bee!

Please be praying for a couple of people.  First, a family member is going through a serious health crisis.  I'm not sure that person wants me naming their name, but please be in prayer as God knows the need.  Second, please pray for Genevieve as she is having her PSARVUP at Cincinnati this week.  The family did not receive the most encouraging news about her prognosis.  Keep her family in your prayers as they sit in the waiting room for those many hours, just as we did 4 months ago.

Sunday, February 6, 2011

Homeward Bound

The residents were in at 6 am for rounds, and it looks like we'll be going home today.  Sadie rested well last night (compared to the last 6 nights) and I think we are all feeling much better.  She's drinking well, and we'll try cereal here in a little while.  More updates when we're home...

Saturday, February 5, 2011

Lots of Snow, But a No-Go

My previous weather-indicates-discharge-status-theory from yesterday has been blown out of the water.  Sadie had a rough night last night, not for any medically concerning reasons, but the lack of sleep caused her to wake up more like a wet noodle than a toddler.  She's not drinking a lot, so the surgeon cut her IV fluids in half to challenge her hydration and hopefully make her more interested in drinking.  She is allowed to start baby food today as well.  He doesn't feel, however, that Sadie is ready to go home today.  And we're okay with that.  We want her to be 100% ready.  So for today, we're just enjoying the view of the Indianapolis skyline being coated with a fluffy blanket of snow, and we're content in knowing that we don't have to drive home in the midst of it.

Friday, February 4, 2011

You go, girl!

Postop day 2 was starting to shape up to be a rerun of postop day 1, until a couple of hours ago when, lo and behold, the long awaited poop arrived!!  Sadie is allowed clear liquids and milk for today, and hopefully we'll be able to advance her diet tomorrow.  And (dare I say it?) maybe we can go home!  Actually, I'm sure we'll be going home because more snow is predicted for tomorrow's forecast.  Bad weather has always been an indicator for Sadie.  It took us 3 hours to get home after she was born because it was snowing horribly.  And, we had to come to Indy 2 days early for this trip because of an ice storm.

For some reason I can't get pictures to upload onto the laptop right now, so I'll put up pictures after we get home.  In the meantime, I'll be typing updates as things happen.

Thanks for all the prayers, support, love, etc. you have given us over the last 14 months.  We would have never made it without everyone's support.

Thursday, February 3, 2011

Postop Day 1

In a word, exhausting.  So glad this day is behind us!  There isn't much new to report.  We've been waiting for Sadie to poop so she could start eating, but no poop today.  The surgeon stopped by this afternoon and said she could have liquids tomorrow, which is an immense relief.  Nephrology also wanted to just check some labs tomorrow.  We're hoping that Sadie is not acidotic and doesn't have to resume meds to treat it.  Otherwise, we've just been trying to keep Sadie happily entertained, which has proven to be a big job.  We are trying to avoid narcotics because they'll slow her bowel down even more.  Tylenol suppositories and IV Toradol have managed to keep her pain fairly well controlled but haven't allowed her to get much rest.  She's not used to being held while she sleeps.  However, as soon as she's out of our arms and her back hits the mattress she's wide awake and crying.  Chris and I are exhausted from sleep deprivation, constant snuggling, hospital food, picking up thrown toys, and singing the same songs 100 times today.  But we are hopeful that this is the worst, and it is now over.

Wednesday, February 2, 2011

Surgery 3, Update 2

Sadie was out of recovery and into her room by 12 noon.  We are so happy that we got a room in the beautiful new Simon Tower, which just opened last week.  We have a private room with a fridge, enough room for Mom and Dad to stay, a shower, a Wii...we are so spoiled!  We were also very happy to learn that one of our favorite nurses from the old infant unit was going to be her nurse again.  We don't think it will be necessary to pursue getting a room at Ronald McDonald House this time.  It is such a relief to be in such a relaxing environment surrounded by nurses we know and trust.  More to come...

Surgery 3, Update 1

We arrived at Riley at about 7:30 am, having survived the 3-day bowel prep.  Sadie made a new friend; a little boy who's about 18 months old or so.  He kept trying to give Sadie his Hot Wheels SUV, so the nurses found a red Lincoln Navigator Hot Wheel for Sadie to keep.  That kept her distracted until it was time for her to go back.  She went into surgery just before 9 am.  The surgery is expected to last about 2 hours.  I'll post more later, including a synopsis of our adventures over the last couple of days!