Thursday, June 20, 2013


I have had a few people ask me what exactly a picc line is, since I'm always talking about it when Caleb gets a new one.  A picc line is a very thin catheter (tube) that is inserted in a vein in Caleb's arm and then stitched in on either side to keep the line from moving or being pulled out.  The catheter actually goes all the way directly into his heart where it delivers a continuous dose of milrinone, which is a powerful drug that helps Caleb's heart continue to beat and helps it to beat stronger.  This is why Caleb is constantly attached to his IV pole; he can't ever be off his milrinone.  Typically, a picc line can last for about 1-2 months; Caleb has had to get 5 in the time we've been here.  They have to switch the dressing every week to minimize the risk of infection.  Caleb is so used to this that he holds very still and is such a good sport.  Here's this week's dressing change.

Caleb is so used to these things... picc lines and dressing changes, medications and daily shots in his thighs and all the other things involved in the day-to-day life of a kid with congestive heart failure.  But I don't really ever get used to it.  He's as happy as can be with his life, but I would give ANYTHING for him to NOT know what an echo is, or how to put his own leads back on when the stickers come off his chest.  (Yeah, he does that.)  It's an ongoing process of me accepting not just my own circumstances, but the circumstances that Caleb has to live with for the rest of his life. 

We have been here in this hospital for almost 8 months, and I have realized that the whole "acceptance" thing is something you don't just choose once and you're good; I have to decide over and over again to accept our life.  Usually it is a daily choice.  Regardless of whether I had a good day yesterday, I am faced time and again with the decision of whether or not I will accept my life as it is.  And actually, Daniel said something the other day that took that thought a step further.  This week Daniel was a guest speaker at the national Donate Life America annual conference (it happened to be in Indy; he was amazing and got a standing ovation), where he was invited to come and share about our pre-transplant experience.  One thing he said is that what's better than accepting our circumstances is actually embracing them, finding joy in these circumstances and being able to be thankful for the life we've been given.  I'm not there every day, but I'm having more "accept and embrace" days than "hate this stuff" days.  It's almost like these last 8 months we've been going through stages of grief... denial, anger, depression... and now we're arriving at acceptance.

God's timing is so weird.  His agenda is definitely not to just give us what we think we want.  I don't always know what on earth His agenda is.  But I do believe that when I look back on this time in my life, down the road, I will agree with God that what He did was better than what I would have chosen.  Because that's always how it is!  I look at the sale of our house... I have wanted to sell that house and move into a bigger one for almost 3 years.  It didn't sell, didn't sell, didn't sell.  We felt like God was saying, "Wait" so we took it off the market last year.  Then Caleb got sick.  And because of what we were going through, some very kind people sold us a BEAUTIFUL home for cheaper than they should have, a home that we probably would not have been able to afford without their generosity.  That house wouldn't be ours if not for what Caleb has gone through.  Then the Espinozas were able to move in to the old house and God provided for someone ELSE through our waiting on His timing.  And then literally the week they moved out, a young couple decided they wanted to buy the house, and there won't even be a single month that the house will be unoccupied.  

God's timing was PERFECT... and I just think about if He would have given me what I wanted 3 years ago.  I would not have the wonderful house I have now, we would not have been able to share our home with our friends, and I would not have learned the lesson of trusting His timing.  The house experience has strengthened my faith, and helped me with patience in waiting for Caleb to get a heart.  I can't see it now, but I know when I look back, the story will be so clear and His much-better purposes will be obvious.  Or maybe they won't be obvious!  But I'll know that God wasn't just messing around with us, and that He knows way better than I do what's best for me, best for Caleb, best for His kingdom.

Tuesday, June 11, 2013

Our house for sale!

Look at this lovely house for sale!

717 South 15th Street, New Castle, IN
Priced to sell in the $50's
Completely move-in ready and available for immediate possession!

Two Bedrooms, spacious living room with gas fireplace, full basement with plumbing and ready to be finished for additional living space.  Dining nook with built-in cabinets.  Great back yard and patio area.  Nice neighborhood with great neighbors.

Updates include:
New roof
New siding
New furnace and water heater
Updated bathroom with custom tile work
Updated kitchen with new counters, sink and dishwasher

Call 465-2950 for a showing!

Monday, June 10, 2013

Great news... and we need your help!

The first thing I remember Daniel saying when we found out Friday that we are having a baby GIRL was, "Oh crap, I don't know how to wipe a girl... there are so many folds!"  Well, if that's our greatest concern, I think we'll be ok.  Friday we took Caleb down to get an echo and while we were down there, we spontaneously decided to go ahead and have the baby's heart checked.  And her little heart is perfectly healthy.  No missing valves, no defects, no problems.  It was yet another of those moments in my life where I was crying and laughing at the same time and I surely looked like some kind of crazy person.  A healthy baby.  And it's a GIRL.  I am still in shock.  

When we went to get a routine ultrasound at 20 weeks, when I was pregnant with Caleb, we received some of the worst news expecting parents can receive.  And from that day on, my pregnancy was a fearful time.  My due date was no longer a day we anticipated with excitement, it was a day we dreaded.  We spent the next few months trying to cope with the news that our child would have half a functioning heart.  Then when Caleb was born, he endured two open heart surgeries within the first year of his life, spent weeks in the hospital, and required a lot of medical attention.  Needless to say, his babyhood was nothing like we had expected and more challenging than we even could have guessed.  I spent a lot of that first year of Caleb's life depressed and lonely.  When we look back on that time, it's actually hard to remember normal baby stuff.  Most of our memories involve wires and meds and crying together on the couch after our kids went to sleep.

A big reason we wanted to have another child was because we knew that another baby would bring so much joy to all of us.  And she already has.  More than I would have guessed!  When we found out this baby has a healthy heart and that it is a girl, I don't know if I have ever been more happy in my whole life.  And to think of having a normal birth experience, and to come home to a normal life... to think of my baby sitting up, and crawling, and walking, and being able to run when she's supposed to... it makes me so happy I cry just thinking about it.  This baby is already a bright light in our life, to all four of us, and I know we're going to enjoy every minute of her.  Of course we enjoyed Caleb as a baby, and Jonah too, but there's something so special about the timing of this new addition to our family that makes me so excited and thankful.  And hopeful.  I got this wonderful birthday present this weekend... maybe Daniel can get a wonderful Father's Day present next weekend... I can't imagine my joy when Caleb gets his new heart and we are on the road home.

Speaking of home, I actually need your help.  I'm hoping that all of you who read my blog will be able to help us get our old house sold.  Our friends, the Espinozas, have been living in our old house and they are now getting ready to go back to Costa Rica.  They bought tickets to go home on June 19.  That means we're getting ready to have two mortgages and we certainly don't need that!  We KNOW God wanted us to put off selling it and allow them to live there, and we KNOW He will keep providing for us.  Now it's finally time to sell.  Will you help us get the word out?  I am going to post some pictures on facebook with some info this week, and I ask that you SHARE this information and think of anyone you know who is interested in buying.  If you are able to post a flyer at your workplace, please let me know and I'll email you one.  If you know anyone looking to buy a perfect little starter home, please send them our way.  Keep your eyes peeled for info!