Waiting til Surgery is Almost Over!

Overall we had a good day.  When we first arrived, we got the call that we have a room in the Ronald McDonald House.  What a HUGE blessing!  It's within walking distance of the hospital.  Very nice rooms and only $15/night.  And good memories of thankfulness through the years!

It's a time warp to walk in and remember the first time when they only had an upstairs room for us at first, and it was just days after I had a C-section with no elevator.  The next night someone traded with us!  We were so young then and the intensity of Riley was all so new.  Our baby was on a ventilator and we had no idea if he would live or not.  Now look at us 17.5 years later!  God is good!!  We all have grown so much!

Today we had some good laughs and met some good people.  Tom and Jacob are posting pics to the pics page, so check them out.  That's another great way to walk with us.

Jocie started with a rough day.  The middle of the day she had tons of fun, but she didn't nap until we got in the car to go to dinner.  Then she only napped a little bit.  Who knows what PawPaw & NaNa are up against tonight.  She was not her happy self by the end of the day. Continue to pray for her. 

We had a nice dinner with Grandma & Grandpa South tonight.  Grandpa bought Jacob a great steak dinner at Weber Grill.  Tomorrow he will just have IV fluids to "eat"! Maybe some Sprite, too. Grandma & Grandpa will be her tomorrow.  It's nice to have them here. 

We got to see the pacemaker that they will put in tomorrow.  See pics.  Dr. Brown has one other shorter case before Jacob. He had a REALLY long case today so we didn't get to see him today.

Jacob found out that he will have a 5 lb weight restriction for about 5 weeks and he won't be able to drive for 4 weeks.  He is handling those two tidbits remarkably.

Cassie from the Riley Childrens' Foundation came by.  She helped pass some of the waiting time and read a Beauty and the Beast book to Jocie THREE times!

I'm tired... that's about all I have to say right now.  Thanks for riding along with us!  The road tomorrow will be bumpy but we are expectant of God at work providing a new level of healing for Jacob!

Waiting at Riley

Waiting to see what the new pacemaker will look like

Exhaling is Good!

I had an interesting self awareness moment yesterday.  I noticed that every time we got a comment, a FB message, a text, a call... I EXHALED... I think that means that I was holding my breathe even more than I realized!  Thanks for helping me not to pop! :)  We so appreciate each of you! 

After a big PawPaw breakfast, we will head toward Riley.  It's been quite a journey since Jacob started being short of breath in October 2011.  We are ready for this huge leap toward increased heart function!

Thanks for your prayers and encouragement!

Packing and Departing Day... God is carrying us!

Well.... even though I avoided it until this morning, this day has arrived.  Yesterday I kept going in and out of denial... SURELY we are not packing up to do this again...  But sure enough... the day has come!

I do have to say that our prayer time with friends on Sunday was PRECIOUS!  God surrounded us with dear friends who spoke life into us from our Lord Jesus.  Jacob's school nurse and counselor even came! :)  We know that our arms are being held up in special ways as we face what is impossible to face alone.  I remember clearly back in 1996 that someone prayed with Tom and me and reminded us that Jesus is the lifter of our heads.  (Thanks, Becky Whited!)  We desperately needed that reminder!

But you, LORD, are a shield around me, my glory, the One who lifts my head high.

from the Bible in Psalm 3:3

This time the theme we are hearing from many is from the Bible in Exodus 17:12 and 15

When Moses’ hands grew tired, they took a stone and put it under him and he sat on it. Aaron and Hur held his hands up—one on one side, one on the other—

so that his hands remained steady till sunset....

Moses built an altar and called it The LORD is my Banner. 

I have a favorite song Carry You by a group called Watermark. Part of the lyrics speak sweetly to this theme... 

"He goes before you with a big, bright banner across this town saying, "Here comes My child.  Here comes My child."  You will never walk alone now
'cause He loves to surround you.

So... here we go... Being strengthened by friends and family so that our arms don't get weary as we reach up to grab all the resources that God wants to give us!  Healing, hope, courage, strength, grace, wisdom, love, and more and more!

Jacob is feeling relatively good and INCREDIBLY GOOD compared to last week.  Yesterday he was ready to drive again after feeling too weak to drive for four days last week and then we watched him closely over the weekend.  Thanks so much for your prayers!

Tom is working a half day today.  Jacob slept in; he deserves it with all that is coming this week!  Jocie gets to go visit Grandma & Grandpa South.  I started packing... I guess it's about time! 

• We will leave this afternoon for PawPaw & NaNa's house. 
• Tomorrow we will all go to Riley.  Pre-op stuff starts at 11am.  They say to plan for 5-7 hours by the time we talk to everyone we need to talk to and have all of the tests done that need done. 
• Tomorrow afternoon the surgery schedule comes out and then we will know what time to be back at the hospital for surgery on Thursday. 
• Tomorrow night we will connect with PawPaw & NaNa so they can keep Jocelyn for a few days.
• Tomorrow night, Tom and Jacob and I will stay in downtown Indy so we are close to Riley.

I will plan to write more tomorrow night to give you more details.  Hopefully we will even have a few pictures for  you!

I have to say that at this point, I am thankful we have done this before and can lean on the many ways God has been faithful through the years.  I mentioned before that all of the memories are intense, but so many are also sweet.  Much will be different this time because Jacob is older.  He understands more.  He is learning about his heart and the hospital experience rather than just letting us guide him throuhg.  He has memories of his last surgery when that wasn't the case when his first pacemaker was put in.  But the whole, huge, intense experience is not brand new and that is comforting.

Also tomorrow we hope to see friends.  Dr. Mark Rodefeld hopes to come by.  I'm sure I'll tell you more about him soon. He is doing incredibly exciting and encouraging research that could radically change how people with single ventricles are approached surgically.  He has been an important person in Jacob's life over the last year and a half.  And Cassie from the Riley Children's Foundation is hoping to come by.  Tom has worked with her the last several years in August when she is at Old National for the Riley Radiothon.  And then, of course, Dr. John Brown... since we are on Jacob's fifth surgery in 17 years, it's comforting to know we will see his smiling face again, too.

Brett Millikan, Dr. Rodefeld, and Jacob in April 2011 when Brett and Jacob were doing an engineering project on fluid-power mechanics.  The human heart is one of the most phenomenal examples of a pump!

This picture is from May 1996 after Jacob's open heart surgery.  It's not as comfortable to look at, but it's an important memory for us.  God brought MUCH healing to Jacob that week! 

We are hopeful that Jacob will come out of the recovery room and not be on a ventilator. 

The blue and clear tubes that see you can see around his face helped him breathe

until he woke up enough to do it on his own.

This is Jacob and Dr. Brown in July 2011.  Jacob has changed a little bit more than Dr. Brown, huh?

And a smile to close out on... before I get back to packing.

Some Things Don't Change...

First things first... Thank you for your continued prayers! We are hungry for them and blessed by them!

Jacob had a fun day on Saturday.  He looked so much better when he got up!  FANTASTIC!!!  He got to hang out with his friends a large chunk of the day.  We had a houseful of boys again last night.  Things seemed "normal."  Ahhhh..........................

Tom got to come home at 2am this morning.  I was so thankful that he was home.  The project was rough... at least the first three hours.  Huge thanks to Tige & the other guys for tackling the rest of the night so Tom could get some sleep!

Jacob has lots of plans again today.  He's not too excited about staying home when I will be at work and Tom will be napping.  I hope he has a great day!  Please keep praying for him.  The difference between Friday and Saturday was dramatic!  He's even talking about going to school all day tomorrow.  It makes me gulp and take some deep breaths... and look forward to seeing him today!  

A few fun shots... some things don't change over 15 years.... Our kids have a crazy fun dad- although Jacob and Jocelyn both look confused, don't they?  Check out the pictures below... 

Notice the fun Lambchop from Kristina in both pics... although Jocie doesn't know who Lambchop is since it was a fun TV show 15 years ago, she still loves to have it in her crib. 

AND MOST IMPORTANTLY... Jesus is and will be just as faithful to our family

as when Jacob had his open-heart surgery in May 1996!!!

His Word says that His character cannot change.

It doesn't mean it will be easy,

but it means we can and must trust Jacob to the One who created him.

Another Day Closer

Thanks, friends, for your continued prayers!

A few quick things...

• I changed a setting on the blog that makes it easier for you to comment.  We LOVE getting your responses.  They are so encouraging.  Please keep them coming!
• I started an antibiotic yesterday for my sinus infection. (Thanks, Dad!)  Tom is feeling some better but not 100% yet.
• HUGE THANKS to Shannon (Dr. Morera's nurse) and Dr. Morera yesterday!  Shannon moved toward my tears and continued to advocate for Jacob.  Thanks to Dr. Morera for appreciating my "mom issues!"
• I updated the link for the video for Matthew West's song called Strong Enough.  The link yesterday was weird.  Try this one.  It expresses our hearts again today!    Link for video and lyrics
• Please do continue to pray blessings and favor over the big IT project at Old National Bank tonight.  This is a key piece of our story this weekend.  From my point of view, I am hopeful that Tom can get some much needed rest before next week begins and so that our family can be together for the prayer time tomorrow.  I have to leave early int he morning, and Tom is 'on' to get the rest of the family to church.
• I am coordinating a class tomorrow from 11:30am-4:00pm.  I am excited about it, and we have a great team in place who is doing the majority of the behind the scenes work so that they can pull it off on March 4 while we are at Riley.  It's another big event for the weekend.
• Please continue to pray for wise choices for Jacob this weekend so that he can have fun and take care of himself along the way.

Thanks again!  You bless us with your love!

The weekend is here!

Check out this song:  Strong Enough by Matthew West

Link for lyrics and video

This song describes well how we feel right now and how we are trying to trust God in the midst of everything.

Jacob is tired of being home.  He stayed home all day today and didn't go to school.  We're glad it's the weekend... even though it's a busy work weekend for Tom and me.  Please pray that we make good decisions about what we try to do this weekend and that we will be loving toward one another in the midst of the stress.  Jacob is stir crazy, and we don't really know the best way to approach him having a good weekend.

Please pray that the big IT project at Old National (where Tom works) will go very well Saturday night.  We are thankful for those who are covering part of the night so that hopefully Tom can come home around 1am. 

Reminder for those in the Evansville area of the prayer time on Sunday, February 26 at 9:35am at the front of the Worship Center.

Thanks for your prayers!  Next weekend Jacob will have a new pacemaker and the countdown will have started for no restrictions!!

One Step at a Time

Jacob went to one class yesterday, and I just dropped him off for one class today.  He is pressing himself to do even that.  Something changed on Tuesday- drastically- his energy level plummeted.  Hmm... this is hard. 

Right now it is so hard to find the right bance between rest (not so fun for a 17 year old), work (school), and time with his friends (distraction from the hard realities of life).  He desperately needs to laugh.  I'm SO GLAD God has blessed him with GREAT friends who laugh a lot!  Trying to decide what is best for them to do this weekend.  Hmm.....

One week from right now, he will be in surgery.  Today it seems a long way away.

There is always hope.  And hope in the all-powerful and all-loving Lord Jesus does not disappoint!!  We have faced hard times before and seen God's faithfulness.  God reminded me last night how difficult it was before Jacob's open heart.  It was hard to see him so desperately need heart surgery and wait for the chosen time.  Here we go again...

The Weight of It

Jacob needs heart surgery.  I know that is not a new fact for any of us.  But would you please help us carry the weight of that statement?

Our strong, vibrant, very smart, athletic son is incredibly weak.  He got an elevator pass yesterday at school and is excited about it.  Even after a long weekend that included significant rest, he still needed to come home yesterday from school at 10am and take a long nap.  He probably needs to acquiesce and receive the help of someone carrying his books between classes this week.  He's gonna need to do that after surgery for several weeks anyway, so why not start now?

The weight of it all.  We need help carrying it.  You help us do that with your prayers and encouragement.  Please keep them coming!

Tom came home sick yesterday.  It worked out well so that I could leave to go to work.  Hopefully today his antibiotic will kick in.  

A week from today Jacob will be in pre-op.  A week from tomorrow he will be in surgery.  We anticipate that five weeks after that he will be free from restrictions and have a new lease on life.  That day is coming.  Right now we are dependent on Jesus each day for what we need moment by moment... not that other days are different but today we feel it in an intense way. 

"Praise be to the Lord, to God our Savior, who daily bears our burdens."  From the Bible in Psalm 68:19

Thanks for walking with us!

Yesterday and Today and Riley Wagons

YESTERDAY

• Tom started an antibiotic for a sinus infection.  Stress is impacting our immune systems.  Please continue to pray especially for Jacob & Jocelyn to stay healthy.
• Tom, Lori, & Jocelyn took naps, and Jacob rested some.
• Tom finished catching up the laundry and went to the grocery.  We are thankful for the bank holiday.
• I worked some.  Was encouraged by coworkers. Moved forward with coworkers on our big class this Sunday.
• We were encouraged by 400 hits to our blog.  I have to admit that several of those were me as I watched the bottom corner where cities (some from around the world!) showed up as folks like you looked.

I am hopeful that some of the hits were already parents of other kids with single ventricles or other special hearts who need to know there is hope in the journey.  I am excited to put the wonders of the internet to good use!

Thanks again for coming along for the ride with us.  It makes it so much easier knowing we are not alone!

TODAY

• Jacob is working to get caught up from the craziness of the semester so far.  He really wants to leave next week caught up before he gets two more weeks behind. Thanks to his teachers who are working with him and being patient and helpful and yet holding to their standard of excellence!
• Tom and I will move forward at work toward our big projects this weekend.  Tom normally is off on the weekends but this Saturday night holds a huge update of equipment.
• We all take many deep breaths through the day acknowledging that one week from today we leave for PawPaw & NaNa's house.  (They live close to Riley and will be hanging out with Jocelyn while Jacob is in the hospital.)
• We all take one step at a time... trusting God to provide.

RILEY WAGONS

I realized that some of you might not understand the significance of the Riley logo.  Check out photos below...Riley wagons are a special part of the Riley culture.  They carry all the stuff that parents need to take in for extended stays or back out to their cars when they leave.  They carry kids from pumpkin seat size up to about eight years old.  They allow kids to go for rides and get out of their rooms once they are able. Some of the kids have been through chemo or brain surgery or are hooked up to many tubes or can't walk for other reasons. 

Riley wagons... We smile when we think of them as they represent one of the many ways that this children's hospital makes kids and families feel special.

 After Jacob's open heart surgery in May 1996.

In October 2010 while waiting for Jacob's first pacemaker surgery... only a Kodak moment...

we didn't put the wagons to the test with our 16 year old and his friend Christian.

So many memories at Riley.  So many good times and challenging times.  Part of the intensity of this week is thinking back through the memories.  Part of the sweetness of this week is remembering God's faithfulness through the years.  The Riley Ride... WHEW and WOW!

RILEY BOUND...

We are a family of four who loves Jesus.  Our Jesus is trustworthy and faithful and majestic, and it's a good thing because our challenges are big.  Jacob, our strong and bold and courageous seventeen year old, has been short of breath since October 2011.  On February 8 we learned that he needs his fifth heart surgery at Riley Hospital for Children in Indianapolis, Indiana. 

Someday I'll write more of the back story.  For today thank you for jumping into life with us.  I can't imagine tackling this season of our lives without a strong community around us. 

In 1996, when Jacob had his open heart surgery, we had two verses of the Bible that reflected our hearts.  They still do.

"On Christ we have set our hope that He will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many." 2 Corinthians 1:10-11

Fifteen years later, here we go again.  This time we also have a precious little girl with a vibrant joy who keeps us smiling and laughing. This March she will be "two and three quarters."  It's really fun to hear a little one say, "two and three quarters."  Come along for the ride with us.  I'm sure we'll share other funny things that Jocelyn says.

Jacob's surgery on March 1 will upgrade his pacemaker that was placed in October 2010.  He needs two more leads added to increase his heart's pumping power and rate.  Some people get pacemakers with relatively easy surgeries.  Because of the many ways that Jacob's heart is special, this surgery will require his sternum being opened up like in an open heart surgery.  Last week he was trying to explain this surgery to a friend.  He got out the measuring tape to measure his scar from his open heart surgery.  If Jacob's incision ends up like his surgery in 1996, it might be about nine inches long.  (Of course back then it was only about four inches long!)  If all goes as well as it did with his last surgery, we anticipate about four days in the hospital.

We will leave on February 28 and go to PawPaw & NaNa's house overnight.  We need to be at Riley at 11am on Wednesday, February 29 for pre-op.  That afternoon we will find out what time the surgery will be.

Stay tuned for details.  We anticipate seeing God's hand of gracious favor in answer to the prayers of many.  We would love for you to be counted in that "many."  As I said, Riley adventures require a strong community.  They are impossible to travel alone. 

Oh yea, when I was telling you about our family, I forgot to mention our dog Oreo.  We have wonderful friends who will be staying with our dog Oreo.  We figured that this time, it would be better to leave Oreo at home.  I told you it takes community!

Through the years, SO MANY have helped with very many and practical things of life.  This is another example...in 1996, a friend took some groceries to our house so we would have some things when we first got home.  We opened up the eggs to find that he had he written "Go Cubs!" on a few eggs with a blue Sharpie.  We got a good laugh... who in their right mind would be Cubs fans?!  I guess he thought that in our weakened state of exhaustion we might convert.  This video says it all....