Kinnaird, party of five

Well, at least the adults are looking at the camera.  I know I haven't posted pictures in a while and this was my attempt to get a good picture of my family.  It was the best we could do.  

Today was Daniel's birthday and we had a great day.  It made me appreciate my husband for about the millionth time since we've been in the hospital; if we're still here on MY birthday, I will probably be a little grouchy about it.  But not Daniel- he had a good day, even though the extent of his birthday celebration was cinnamon rolls for breakfast and a dance party with our kids.  OK, that is pretty awesome.  And we had lunch with my family, and that's pretty awesome too.

Caleb has been doing fairly well.  He has had a couple bad days here and there, days where he is working really hard to breathe and retaining a lot of fluid.  We are really thankful for his improvement since a few weeks ago.  He continues to put on weight and his cheeks are getting so fat that they make me laugh just looking at them.  I know some of it is him retaining water, but some of that is also legitimate weight gain.  Whatever it is, it's super cute.  I love this kid.  Here he is wearing Incredible Hulk hands.

On Monday we will have been in this hospital for 5 whole months.  I never would have dreamed that would be the case.  I keep thinking surely he will get a heart soon, it's GOT to be soon.  I honestly have to choose not to think about it, because if I start thinking about how badly I want it to happen, I start to feel this desperate feeling that actually hurts.  It physically makes me ache.  So I just put it out of my head the best I can.  Overall, we are doing well.  We have a lot of fun together and that makes the days here enjoyable and not sad.  Also, we have so much to look forward to!  Caleb WILL get a heart, we will go home to our new house, we will have a life again outside the hospital... 

Aaaaaaaand we're going to have another baby!  That's right, we thought life was getting a little boring and maybe we should add some excitement.  :)  In truth, we've wanted to have another child and have always tried to plan around Caleb's stuff.  Then we finally decided, forget it, we have to keep living!  We have no idea what our future looks like and if Caleb has proven anything, it's that we have no control whatsoever over his journey.  So we went for it!  And we are SO excited!  And so are the boys.  Everyone is sort of rooting for a girl, but a family with 3 brothers seems pretty stinking great too.  Either way, this baby has already brought us so much joy and excitement and it's just another assurance that we have wonderful days (even if they are exhausting days!) ahead of us.

Here are some specific prayer requests we have right now:

1- Please pray for this issue of Caleb retaining fluids.  For the last week, it's been a daily issue.  Please pray for that to improve.

2- Pray for Daniel's job.  This is his busiest time of year and you can't even imagine what his day looks like.  He is with his family every waking minute and starts work as soon as the boys go to sleep.  He has an awesome attitude but he is getting so weary.  Please pray for energy and stamina and focus!

3- Please pray for me as I'm carrying a baby through all this.  I am 8 weeks along and mostly just feel tired.  Fortunately we have tons of support and I take a nap every day.  How spoiled am I?  It's not too shabby to have awesome nurses who say, "Why don't you lay down, I'll change Caleb's diaper".  

Thanks for your continued prayers!  And Happy Easter!  

Just a servant

I completely realize that you could chalk up what I'm about to tell you to just about anything... you could say it is luck, or medical science, or whatever it is you believe in.  But I'm confident that the reason my news is all good is because of the work of God in the life of my family. 

First off, our insurance issues are completely resolved.  Caleb's disability insurance got re-authorized and his coverage never lapsed.  We didn't even have to use our backup plan!  He still has the "Cadillac" of insurance coverage... ALL of his bills related to his transplant will be 100% covered by Medicaid.

Second, Caleb's liver issues have greatly improved, to the doctors' pleasant surprise.  Today his numbers looked so good that they could go back up on his TPN (that's his IV nutrition).  His kidneys look completely fine.  He shows no signs of other organs failing because of his poor heart funtion.

Third, Caleb's energy level and appetite have increased.  He has been out of bed to play and walk every single day for the past week, with no problems.  And he has started to show interest in food again, even if it is tiny bites here and there.  For lunch he had 3 grapes and I was SO proud of him.  For supper he had one pepperoni, one bite of a breadstick, and 2 ounces of Sprite, and we were thrilled.  This may seem like nothing, but it is a victory for Caleb, considering how many weeks he went without eating or drinking anything besides water.

Last week, I was praying desperately for God to have mercy on Caleb and give him a heart that very day.  And while I was praying that, over and over saying "Please God, have mercy on him", God responded, "I am having mercy on Caleb.  You don't always recognize My mercy."  Caleb may not have gotten a heart yet, but God IS merciful to us and is continuing to keep my son going and giving us help in many ways.  We know in our hearts that God's mercy is the reason Caleb is still alive and the reason I can tell you that he is doing much better.  Thank you for your prayers!  They are powerful and effective.

You know, I've had several conversations about just how many people are praying for Caleb... there are thousands of people, all over the world.  One thing people say to me sometimes is that it's hard to imagine how thousands of people are praying for Caleb and yet he still doesn't have a new heart.  To me, that is pretty easy to understand.  See, every day we see ways that God is active in our life and using us and Caleb along the way.  For example, let me tell you a crazy little story.  Daniel works for a Christian missions organization, working with missionaries all over the world.  One day he was on the phone with a missionary in Costa Rica, and he shared with Daniel about a family that needed prayer.  The couple had just found out that their unborn baby had a heart defect and they didn't even expect the child to live.  The couple were Costa Rican, but they were serving as missionaires in Bosnia where medical technology was not very available.  Daniel got off the phone and started praying for them, and as he prayed, he felt overwhemed with grief for them.  Because of all we'd already gone through with Caleb, Daniel knew the fear and disappointment they must be feeling and he begged God to provide for them.

As months went on, many people were praying for this family as well.  Well, someone from the U.S. heard about their situation and generously paid for them to come to the U.S., helped them to get visas, and to get the kind of medical help they needed.  Their daughter was born here in the U.S. and after being at a children's hospital in Oklahoma for a while, a friend of a friend offered for them to stay in a missionary house in Valporaiso and guess what.... they ended up at Riley.  Four doors down from our room.  And they are now our dear friends and a great encouragement to us.  It's so crazy to think that in the whole wide world, this family that we prayed for ended up right next door, at the same time we were in the hospital.  The missionary house where they live is 2 and 1/2 hours away from the hospital and they are only able to stay there for one year, the lease ends in a few weeks.  When they shared that with us, both Daniel and I immediately thought about offering them to come stay in our house, our old house which hasn't sold yet (much to our frustration, but isn't God interesting the way He works?).  They were thrilled... our house is less than an hour from the hospital and they can be near new friends.  They will probably be discharged from the hospital in the next few weeks, but their daughter cannot fly home to Costa Rica yet because she will need ongoing care for several months.  So in that time, they will be living in our hometown, in our house.

If Caleb had gotten a heart back a few months ago, we would never have gotten to know the Espinozas.  We never would have been able to offer them to move to our house.  And there are so many other things every day that help us see how God is not late in answering our prayers.  He is always using our circumstances for His purposes, and we are just His servants to submit to what He lays out in front of us.  That's what I have been praying this week... I'm your servant, Lord.  I'm your servant in this hospital.  I'm your servant at the Ronald McDonald House.  I'm your servant in this family.  I'm your servant wherever you put me.  If I hold on too tightly to what I want God to do for ME, I will miss out on what He wants me to do for HIM. 

A growing urgency

Sometimes it feels almost silly to ask people to pray for us, as if you all haven't done that for months... but today I am asking you to pray again.  We have had a pretty good week this week, but there are a couple concerns on our hearts.  

It's not that I haven't been honest, but I certainly haven't really shared how Caleb has been doing lately.  The truth is, he's not doing that great.  When we thought he was getting a new heart last week, we kept saying how it happened just in the nick of time.  But then it didn't happen.  Caleb has good days regularly, but he also has bad days regularly, and when you look at his health over the course of the last month or two, it's very easy to see how he has consistently trended down.  He works really hard to breathe.  His heart rate gets high too often, sometimes even when he's just laying down.  He rarely gets out on the floor to walk around anymore and spends a lot of his time in his bed.  He doesn't eat or drink anything other than water and he vomits daily; his gut isn't functioning well and those medicines hit his empty stomach and he pukes.  The last few days, the doctors have said that his liver is starting to show signs of dysfunction, which can be expected because of how long he has had IV nutrition.  They are checking his kidney function today. When a person has heart failure, eventually all the major organs start to shut down.  The doctors have told us that there are still some adjustments to make and some things we can try, so we're not at the end of our options.  But if he continues to do poorly, the next step they will take is to indefinitely sedate him and put him back on a ventilator so that his heart doesn't have to work so hard.  When you're sleeping, your heart has less work to do.  The idea of Caleb lying in a bed unconscious for the rest of this wait is a pretty hard pill to swallow.  Again, we're not there yet, but that step is in sight.

This week Caleb had 3 good days in a row, and then a couple less-great days.  On top of all this, the social worker came in with some potentially bad news... Medicaid is re-evaluating Caleb for his coverage.  They were not supposed to do this for 12 months, but because it just so happened to be time to re-evaluate Jonah (who is on Hoosier Healthwise), they decided to re-evaluate Caleb as well.  From what we've learned, Medicaid will do everything they can to NOT cover you.  If they drop Caleb's coverage, he will have to go "inactive" on the transplant list until he gets coverage again.  There is a conference call on Monday and our social workers are doing everything they can but we won't know the outcome until the middle of next week.  Seeing that Caleb is getting sicker, the idea of an insurance issue keeping him off the transplant list for any period of time freaks me out.  

Would you please pray with us that Caleb would get a heart this weekend?  Before his body gets weaker and before insurance could drop him?  Would you pray that God would move in the hearts of any parents this weekend who are faced with the option of donating their children's organs, that they would have the grace to say yes?  Would you pray that we would not give in to fear and worry but enjoy our weekend with our boys while we wait for Monday to find out test results and insurance decisions?  If Caleb could just get a heart this weekend, none of it would matter.... 

Caleb is such a trooper, and even though I know he feels badly, he is still a sweet, happy little boy.  But he is also a boy that desperately needs a miracle.  Please pray with us, ask your friends and church to pray, that God would provide a new heart for Caleb THIS WEEKEND.  Knowing we have an army of Caleb supporters will keep our spirits up!  Thank you for your love and prayers!

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.

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.

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.

FAQ

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!