Monday, February 25, 2013

Not the post I wanted to write today

I hardly know what to write.  Last week was such a great week, full of good news and blessings.  I joked that it would be just perfect if we moved all our stuff into our new house, went to bed and got woken up in the night with The Call that a heart was coming.  And that's exactly what happened.  When our phone rang at 3:30 in the morning on Sunday, Daniel flew out of bed with the added disorientation of not only being woken up in the middle of the night, but sleeping in an unfamiliar room.  It was the hospital and there was a potential heart.  I just crumbled on the floor in a heap of tears, begging God to please, please, please let this happen.  We knew it wasn't definite but everything looked good.  You can imagine what it was like to be told we had to just sit and wait a few hours to know any more news.

We arrived at the hospital at 8:30 and it wasn't until around noon that the surgeon came in and told us that the hospital where the donor was had acted prematurely and that the heart that had been offered was in much worse shape than they believed.  The transplant wasn't possible.  I couldn't even cry.  I just stood there blankly and didn't want anyone to touch me.  I didn't want anyone to tell me that it would be ok or that the right heart would come.  I just wanted to go eat lunch and forget that for 8 hours I thought Caleb was going to get a heart.

I didn't let myself even think about it until the end of the day.  Our family had come and when they all left, and we put Caleb to bed and sent Jonah home with Grammy, we came back to the Ronald McDonald House and went to bed and wept.  Then we woke up this morning and wept some more before we even got showered.  We spent about half an hour praying together before we got up and went back to the hospital.  I think today was the first time that we honestly felt like we almost couldn't get out of bed and go back there.  But we did, one step at a time.  It was like we just had to decide we were not going to give up... because we were sure tempted to.  When I opened my eyes this morning, I felt like I was so close to the edge; the edge of total despair and darkness.  I begged God to help us and told Him that He is the only thing between me and hopelessness.  He simply had to help because we had nothing else to keep us from falling apart.

He did help.  We got up, we showered, we went back to that room.  We thanked God for another day.  We ate lunch together while Caleb napped and we processed the events of yesterday.  We took a nap ourselves.  We met with the transplant team who were sincerely shaken; everyone was.  Everyone on this floor wanted that heart to come so badly.  It was a comfort to us to see how deeply the people here care for us and our son.  By the time Caleb got up from his nap this afternoon, we were in a much better place.  A kind soul brought us supper and while we were eating it, I had the overwhelming sense that people were praying for us and that God was giving us little slivers of peace and strength because of those prayers.  

Thank you for all your care and prayers.  They make a difference.  If you have taken the time to offer a prayer for us, please know you have our deepest appreciation.  We still believe in a loving God, even when it seems crazy to do so, and we still choose to accept whatever He has for our life.

Thursday, February 21, 2013

Counting our blessings

You will be happy to know that we have had heaps of blessings this week. First off, we got the wonderful news that Jonah was allowed to come back to the hospital. After being apart for a month, my boys have absolutely mauled each other. When Jonah came in, he immediately climbed up in Caleb's bed and they just hugged and hugged. Then immediately Jonah pulled Star Wars guys out of his backpack one at a time to show Caleb; they had important things to catch up on.

Then yesterday, we were informed that an apartment here at the Ronald McDonald House was available. They have 6 of these apartments for transplant families. Normally you move in post-transplant, but we have been here so long that the staff is allowing us to move now. Unless you have ever lived in essentially a hotel room for 4 months, you can't even imagine how much of an upgrade this is. Don't get me wrong, we are incredibly thankful to have a place to stay together, but it has been a strain to only have a public lounge to spend time in together. Now we have our own bathroom, kitchen, living room with a tv.... It feels like we have the world! Having some privacy back, and being able to spend the days together, is heaven.

And it gets even better... As you may know if you have read my blog for some time, I have always dreamed of moving into a bigger house. Since we got married in 2004, we have lived in a happy little 900-square-feet house. And we have tried to move, but over and over it hasn't happened. We always felt like God was telling us to be patient and wait for His timing, and we have. And now that makes perfect sense, because we are getting ready to move into a beautiful home. It has 5 bedrooms, and it is down the street from my in-laws (who, incidentally, are going to be able to help with our boys when we come home). It is so wonderful that every time I walk through the house, I can hardly believe it's going to be mine. The amazingly generous people who are selling it to us have given us such a gift; because of Caleb, they are selling us a house that they have personally renovated, at their own cost, and selling it to us for a personal loss. Otherwise we would never be able to afford this home. You can probably imagine how it feels to be waiting in the hospital but have this wonderful new home to look forward to. God's timing is so perfect in every way! We are moving Saturday and I am so glad we waited for the house HE had for us.

God is so good to our family. We are growing and learning, and hopefully teaching our kids to have a thankful heart. As Jonah reminded me last time we stopped by the new house, "Mommy, we're really blessed." Out of the mouths of babes.

Thursday, February 7, 2013

Wonky Clay

Why can't my kids remember the things I want them to remember, and forget the things I wish they'd forget?  Today I had a Mommy Failure: I took Jonah on a date to Chick-fil-A and I thought it was adorable that he was singing along in the back seat with me... until I realized the lyrics he knew, word for word, were, "So if by the time the bar closes, and ya feel like falling down, I'll carry you home tonight."  Oops.  Guess I need to pay more attention to what I'm listening to.  What is the deal?  The kid can't remember to wash his hands after he poops, but he can remember every word to a fun. song?  (Oh, people over 40, and Tiffany Thompson, fun. is the name of a band and not a punctuation error on my part.)  

I've been trying to spend a lot of time with Jonah lately because I think this is all finally getting to him a little bit.  He's been ok for the most part, but he's started saying he's scared of the dark, and he falls apart when I tell him "no", and he generally just wants to be where his parents are.  Basically, he's just tired and wants to go home.  And he doesn't know how to communicate the way this all affects him.  I'm proud of him, though.  He has been a rock star these last few months.  Needing to give him a little more attention is certainly not the worst problem to have.  

And speaking of problems, are you sick of hearing about mine yet?  Because I sure am.  I'm so ready to write the blog everyone is waiting for, the one with some great news.  I want to write a blog that says everything is wonderful and easy and Caleb got a new heart and our family never had any more struggles again, the end.  Except that no one would read that, because it would be boring... I know that because my most pitiful blog posts are always the ones that get the most hits.  

But I digress!  I say I'm tired of thinking about my problems, but the truth is, I don't sit around thinking about "my problems".  Lately I try not to think about much of anything.  And God has been whispering in my ear about this.  It is so much easier to just enjoy some mindless magazine whenever I actually get a chance to sit down and relax.  Last night I tried to do that, just zone out, and God brought to mind a little passage in the book of Jeremiah.  It's a passage that He has brought to my mind 2 or 3 other times in my life, and always during times when I know God really wants me to pay attention to Him.  In Jeremiah 18, God tells Jeremiah to go down to the potter's house and watch the potter at his wheel.  So Jeremiah goes and the guy is sitting at his potters wheel making something out of clay.  While he is working on his piece, the clay gets wonky (the Katie Kinnaird version), so the potter scraps what he was making and starts over, making something different this time with that same bit of clay.  And while Jeremiah is watching this, God speaks to him.  God says (again, the Katie Kinnaird version), "See what the potter is doing?  See how he had a plan for that clay, but as he was making it, the clay got wonky so he started over?  He changed the clay into something completely different than what he started out with.  That is what your life is in My hands.  I may have great plans to use you and bless you, but My plans for you are not set in stone... they can change depending on how you live and the choices you make."  

See, I'm trying to turn my mind off, but God keeps reminding me to turn it back on, to re-engage and not float through these days.  He keeps saying to me, "Don't waste this!  Don't waste these days when you could mine them for gold!  Don't get wonky when I'm trying to work with you!"  This is my biggest struggle right now, and how I deal with it will determine whether I get to the other side the same old me, or whether I come out of this a changed woman, a woman who has something to say and something to share.  A woman who is strong and wise and whose roots go waaaaay down deep.  Help me, Lord!  Help me to press in to You and to listen to what You want to say to me!  Help me to turn away from the false comforts around me and turn to You.  I want whatever your Plan A is for me.  I want the plan that involves me knowing you more than I ever have.  Help me to do what it takes to see your greatest blessings come to be.

Friday, February 1, 2013


Happy Heart Month, and specifically, Happy National Wear Red Day.  The American Heart Association has designated February as "Heart Month", but if you live in my house, every month is Heart Month!  In honor of Heart Month, I thought I would do a little "Frequently Asked Questions" blog about Caleb's condition.  Happy reading! 

How is Caleb doing?
Caleb has been doing really well in the last week.  His birthday party was a blast and he has welcomed the second year of his life by having a huge vocabulary explosion.  He now counts to 12 and can sing Itsy Bitsy Spider all by himself.  He had an echo yesterday that showed that his heart function has not worsened and even looks slightly stronger than 2 weeks ago.  He now gets almost his entire daily calorie intake through his IV, and even though he has almost stopped eating entirely, he's gained a little weight and the doctors are pleased with how much energy he has.  Yay for medical technology!

When will Caleb get his new heart?
I wish we knew!  The amount of time people wait varies greatly.  Caleb has now been waiting 3 months and while that feels like an eternity to us sometimes, it is definitely in the realm of normal.  

Where will his new heart come from?
All hearts that are donated come from a person (in Caleb's case, a child) who has been in some kind of accident and is on life support.  When it is determined that the person is brain dead, but the other organs are still functional, this is when the option is presented to parents to donate their child's organs.  The child has to be on life support to be an organ donor; otherwise there is not enough time to procure the organ and transplant it into Caleb's chest.  The heart can come from pretty far away, as long as there is no longer than 4 hours between the time the organ goes from one chest to the next.  When a heart becomes available, it is always offered to patients in that same state first, regardless of how long they have waited.  So if there is a heart in, say, Kansas, and a child that matches that heart has been waiting for 1 day, he would get that heart first.  If no child in that state is waiting for that size of heart, it is then offered to surrounding states and it goes to the child who has been waiting the longest. 

Is Caleb at the top of the waiting list?
There is no single list with kids listed 1 to 100, because there are several factors that go into who gets what heart.  First, there is the status.  Caleb is status 1A, which means he is in the top priority group.  People on status 1A get hearts before any other group because they are the sickest.  The second factor is blood type, which must be compatible.  Caleb has O+ blood which is sometimes difficult to find a match for, because he can only receive a heart that is also O+.  The next factor is size.  Caleb weighs approximately 23 pounds, and his weight range for a donor heart is about 23-45 pounds, roughly.  And finally, each donor heart is checked for certain antigens that have to match Caleb's unique set of antibodies in his own blood.  When you take all these factors into consideration, you get the picture of what kind of heart Caleb can receive.  In the state of Indiana, Caleb is the only child his size waiting for a heart, so if a heart becomes available in our state, it will automatically go to Caleb, as long as it also matches his blood type and antibodies.  We don't know how many other kids in surrounding states are waiting as well, but we know there are now not very many kids in this region who have been waiting as long as Caleb, so hopefully that means a heart will be available soon.

Will Caleb's heart grow with him?
Yes.  It will grow as he grows; however, the average "life span" of a transplanted life is about 10-13 years.  This is due to the fact that most people who have had a heart transplant eventually develop coronary artery disease and get sick again and have to have another transplant.  Some hearts last much longer than that, and some children have to go through it all again only a year later.

Can Caleb receive a girl's heart, or just a boy's?
Gender does not matter and he can receive a heart from a girl.  

Once Caleb gets a new heart, will his health be "fixed"?
When Caleb does receive a new heart, he will feel better than he's ever felt in his life.  He will no longer have a heart defect or heart failure, but will have a fully functioning heart.  However, we are trading in one kind of illness for another because in order to prevent his body from rejecting his new heart, Caleb will be on drugs to suppress his immune system every day for the rest of his life.  Even after 10 years, if Caleb missed his drugs for one day, his body would begin to reject his heart.  (Isn't the human body fascinating?)  Because of his immune system being significantly suppressed, Caleb will have to live by a different set of rules than the rest of us.  Getting sick will be a big deal for him, and we will have to be very careful to avoid people and situations that would expose him to bacteria and viruses that wouldn't be risky for a healthy person, but for him could be very dangerous.  Just to give you a few examples of the things Caleb has to avoid: We can never have a pet.  Caleb can't swim in fresh water.  We will probably never go to a place like Chuck E. Cheese or Big Bounce.  We can't have a real Christmas tree.  We can't peel citrus fruit in front of him and we can't have stuffed animals in our house for the first 6 months post-transplant.  When Caleb goes to school someday, the school nurse will have ongoing communication with the transplant team at Riley and if people are sick at school, Caleb will stay home.  And the list goes on.  So will we have a normal life?  Yes.  And no.  He will be able to run and play and go to P.E. class and do all the activities a healthy kid will.  But he will take tons of meds, and go to the hospital frequently, and have a mom who becomes obsessed with hand sanitizer and avoids crowds during flu season.

What is your biggest need right now?
Our biggest need right now is for people to pray for us and encourage us.  Receiving cards and notes and emails that show us that we are not forgotten make a huge difference in our day.  Financially, we are in a good place and we have been blessed by so many people who have reached out to help.  We just need to have ongoing support because when your life gets disrupted and you live in a hospital, it's easy to feel cut off from the outside world.  And if you're a person who prays, we ask that you continue to pray for us to be strong as a family in every way.

Thank you all for following our story and for being a part of this crazy time in our life.  Fox 59 News is interviewing us this week so stay tuned for Caleb's television debut!