Wednesday, December 26, 2012

"Waiting" is for sissies

It has been a really memorable Christmas.  We have had a lot of fun opening presents, eating Christmas candy, and spending time with family.  Currently our hospital room looks like some kind of Christmas bomb went off leaving the debris of paper, gift bags, and toys all over... there is barely room to walk.  This room always feels small, but you stuff our extended family and two wagons full of presents in here and it's enough to make my blood pressure rise.  Fortunately, this is a good kind of stress and my boys are loving every minute of it.  They are so cute, playing together with all their new stuff, especially now that Caleb is at the age where he wants to do whatever Jonah is doing.  With that in mind, we got Caleb a lightsaber since Jonah has one.  In hindsight, that might not have been my greatest parenting choice.  At least we are already in a hospital, right?

Caleb's doing pretty well.  I was hoping all the holiday goodies would entice him to eat more, but all last week he just continued to eat less and less until he was pretty much only taking a bite or two at meals.  So on Saturday the doctors decided to increase his milrinone, which is something I was really hoping would not happen.  (Recap: Milrinone is the powerful drug that is in a PICC line that runs all the way into Caleb's heart.  It is helping his heart to contract and is considered a "life support" measure at this high of a dose.  He is almost to the maximum dosage.)  The doctors assured me, however, that they are simply trying to get him to eat and are not concerned that his heart function is getting worse.  And that if they need to, they could probably go up just a little more, so we still have at least a tiny buffer if he needs it.  Yesterday the medicine must have started to work because he did eat a little more with each meal.  He had an echo today to see how his heart is doing and I am anxious for the doctors to read the results.  Praying that it hasn't gotten worse. 

I was really hoping that we would get a heart by Christmas.  Now that Christmas has come and gone, I'm starting to come to terms with the fact that we might be here a really long time.  I know it could be any minute, but in my mind I am starting to think maybe it will be a while.  And I'm ok with that.  I want to go home of course, and I desperately want my family to all be together under one roof, but I know that some day when this is all over, I will look back and realize this wasn't that long of a time.  I went sort of crazy a few weeks ago wanting to be done with all this, and in the last few days I've started to have a new level of patience with this season of my life.  I know we can do this... we've already been here for two whole months and I feel stronger than I did when this started.  It's not the timeline I would have chosen, but I'm getting less and less bent out of shape when things don't go the way I would have chosen.  Caleb obviously feels secure and comfortable here, and we're managing to have some kind of normal family life.  Might as well stop thinking about these days as "Days I Wish I Was Doing Something Else" and just enjoy them for what they are.  Because there are much worse ways to pass some time and I have so much to enjoy.  Like a lightsaber-weilding toddler and a four-year-old who is relishing the fact that he is allowed to eat WAY more candy than usual right now.  Much love to you all and praying that you too are finding the joy and blessings that are right in front of you.

Sunday, December 16, 2012

Relaxing... a little

I wanted to update everyone on how Caleb's been doing the past couple days.  We met with the doctor this morning and she did NOT believe that Caleb's heart function was the reason that his appetite was poor; she said he would probably have other symptoms if that was the case.  And since Caleb continues to otherwise seem the same, she did not believe it was necessary to increase his dose of milirinone.  [Insert sigh of relief.]  His weight has remained exactly the same for the past 2 days, no gain or loss.  His appetite has even been a little better, thank you God!  We're fighting for every calorie we can get in that kid.  What a diet... I would love it if a doctor was "forcing" me to eat pizza, ice cream, french fries and chocolate.  Let's be honest, no doctor would have to twist my arm.

I'm relaxing a tiny bit today.  No medical changes for now.  Still praying fervently for God to move in the minds of any family that might be going through a tragedy this week... I'm praying that God would give them the strength and courage and grace to choose to donate organs if the decision is presented to them.  Caleb needs a heart and I'm still praying it's TODAY. 

Friday, December 14, 2012

We need a heart!

This morning I walked over to the hospital from the Ronald McDonald House by myself while Daniel and Jonah spent the morning playing and spending some quality time together.  It was good to go outside and talk to God on my way over.  I can definitely feel His presence with me these last few days, reminding me how much He loves me and that He hasn't left me.  Man, that's a good thing because I need Him so much right now.  God is really keeping the depression at bay and helping me take this one day (or one hour) at a time.  Good friends (and good parents) sure help.  Wow, I love the people in my life.  I don't know what I would do without them!  

Caleb is reminding me this week that he is in fact a really sick kid, even though I forget sometimes after a string of good, boring days.  The last few days Caleb's appetite has really decreased.  They started counting his calories because he wasn't gaining weight, and as the week has gone on, he's been eating less and less and today even posted a slight weight loss.  We talked with the doctors today and they're hoping it's just Caleb being a typical toddler and being picky.  But if he doesn't start eating again by tomorrow night, they're going to increase his milirinone, which is the powerful drug he has in a continuous IV drip.  It is literally contracting his heart.  Being on milirinone is the reason he qualifies for the highest category on the transplant list; it's a big-time drug.  What bothers me is that Caleb's already on such a high dose that there's not much room to increase.  They're getting close to the maximum dosage, which makes me uncomfortable because we'll have no buffer zone after that.  Plus, he needs to be gaining weight right now so he's strong enough for his transplant.  Today when the doctors were a little concerned, it was like a gut punch.  I forget sometimes just how sick he is and how badly he needs a new heart.  But it's spurring me to pray hard for Caleb today and I wanted to invite you to do the same.

We need to pray:

1- That Caleb's appetite would come back and he would gain weight again.

2- That God would provide a heart for Caleb SOON!  Let's pray that Caleb gets a heart THIS WEEKEND!

3-That Daniel and I would have control of our minds and not give in to fear.

Pray, pray, pray when you think of Caleb today.  Prayer makes a real difference in the Kingdom of God so help us by speaking Caleb's requests to our Father!

Tuesday, December 11, 2012


The days are long but the years are... also long.  Wow, waiting is a really hard place to be sometimes.  It's getting harder and harder to muster up some joy and energy.  I know the right things to say when people ask me how I'm doing.  And I really don't want to bum people out by telling them that I just don't want to be here right now, that I really just want to be home enjoying my Christmas tree and watching Christmas movies like everyone else.  I miss being a family together.  Jonah's feeling it too.  When we prayed together before bed the last night he was here, which was last Thursday, he said, "I just want to pray that Caleb gets better so we can all go home."  I hear ya, buddy, don't we all.

On the positive side, we've been here so long that I'm pretty sure Caleb either doesn't remember our home or just doesn't think about it anymore.  He has stopped asking to "go bye-bye" and has just accepted that this is where we live.  I realize that's a good thing because at least he is content and not sad about being in the hospital.  He has become amazingly accepting of all the things doctors and nurses do to him... he even will mimic what the doctors do by trying to do the same thing to his stuffed dog, Artie.  When the nurse gives Caleb medicine, Caleb gives Artie medicine.  When the nurse cleans Caleb's dressing on his arm where his PICC line is, Caleb wants an alcohol wipe too so he can clean Artie's arm.  It's pretty stinking cute.  I'm thankful he is accepting his reality better than his mommy is right now.

We have no idea when Caleb might get a heart.  It could be today, it could be in March.  Please, God, don't let it be in March.  Or if we're going to be here until then, help me be strong!  I joined a facebook page for heart transplant families and one of the moms told me yesterday to remember that these days are not days for waiting, they're days for living.  I guess that's what you can pray for me right now.  

Prayer requests:
1- Pray for us to have perseverance.  Pray for us to be strong and steady and endure these days with patience.
2- Pray for us to be disciplined to spend time with God, to look to Him to fill us up when we are depleted.
3- Pray for a heart to come soon!

Love to you all!

Tuesday, December 4, 2012

My new friend Andrew Luck

I think I might try to start any new conversations this week with, "So my new friend Andrew Luck came to see us today..."  Seriously!  Today I was walking through the lobby at Riley and who should walk right past me but Andrew Luck!  He comes to Riley to visit kids sometimes and I decided to walk up and introduce myself.  He ended up coming up to our room, signed a jersey for Caleb (his idea!!) and became my new favorite person.  What an amazingly humble, kind guy.  He tried to give Caleb "knucks", but Caleb stared at him, wide-eyed, probably because he was so tall.  It was an awesome visit.  He and Daniel joked around and I tried my best to act normal but instead felt like a starstruck idiot.  Anyways, it was a super cool experience!

Sunday, December 2, 2012

The "I" Word

It's been a good week and Caleb has been in great spirits.  We fill our days with playing in the play room, wagon rides, and plenty of play-doh.  Caleb started physical therapy this week and he now gets that 3 times a week.  The doctors want him to build up some strength and use those tiny little bird legs as much as possible.  I've seen improvement already.  We get him out of bed a lot and get him walking around the floor.  He loves this and so do the nurses, because it's Caleb's habit to stop and give a hug to each person he passes.  What a flirt.

Caleb had an echocardiogram this week and the doctor said nothing has changed.  His heart is functioning at about 35% and is enlarged.  He is stable though and they don't anticipate anything really changing much between now and his heart transplant.  

Speaking of transplant, we had a really cool experience yesterday.  Every year, the NCAA hosts a Christmas party for all the Riley heart transplant kids and their families.  We got to attend and it was amazing to see all these kids who have had a heart transplant and are doing well.  There were toddlers who just got a new heart this year and teenagers who have had their hearts for 15 years.  There were about 200 people there and it was so inspiring to see this community that we are now part of.  It was like a big family.  We met one family who had four sons, three of whom were born with heart defects.  And of the three who had heart defects, two have passed away.  And yet this family was AMAZING.  We met all these people and listened to their stories and felt so proud to be a part of this group.  And so excited to think about next year when Caleb will be there with us with his new heart.

I really want to talk about this whole idea of being "inspired".  People tell us all the time that we are an inspiration and I'm not really comfortable with that.  It's not because I'm super modest and don't want the attention; it's because I want to know exactly what people mean when they say that.  If you're like me, lots of things can inspire you, but then you can turn around and go back to your life and that "inspiration" has no real lasting impact.  Being an "inspiration" is nice, but I'm more interested in having an impact.  An inspiration can be a fleeting emotion, but an impact means something in your life is different or changed.  Now don't get me wrong, it's very complimentary when people tell us we're an inspiration. I just want to take the conversation a step further and ask, has Caleb's story changed you in any way?  Because as Christians, lots of things can convict us, encourage us, inspire us, but we can easily walk away and forget what God just said to us.  I'm struggling with this myself.  I hope that I'm really a different person because of all the stuff I've been through.  God has taught me a lot in these days at the hospital but even the most eye-opening revelation can slip out of my mind after time passes.  (Confession: Especially because I spend too much time watching tv and not enough time with God.)    

How about you?  If you've felt inspired by our story, what is it that you're inspired to do, or be?  Has your life been impacted in some way?  Has God spoken to you about Caleb's story, and if so, what have you done in response to His voice?  I'd love to hear your answer to these questions.  Please! :)

For now, thanks for your continued prayers.  And this little guy thanks you too.