Perspective

Caleb has a lot of "jokes" right now that he believes to be hilarious; they're not actually that funny, but he is so cute, and so popular with the nurses, that they laugh at him and now he thinks he's a comedian.  One of his favorite "jokes" is to pretend to sneeze.  Another is to put whatever he's eating on his head.  That one actually is pretty funny.  Looking over and seeing a half-eaten chicken nugget just resting on his head would make anyone laugh.  See picture below.

We have had several very good days in a row.  Caleb has been in a really good mood, and has even become much more social here at the hospital than he has ever been.  He calls his nurses by their names, plays and sings with whomever will give him attention.  It's actually awesome to see his little personality shining.

I have experienced a personal revival in the last couple days.  To be honest, all last week I was slowly sinking into a depression.  Every day I struggled to accept our circumstances and would fight off tears every time I thought about the life I am missing out on now that my family has been relocated to a hospital.  Then on Sunday while driving back to the hospital, I spent some much-needed time with God, alone and focused, and I started out just listening to some songs about Jesus.  I listened to one particular song over and over and just let the truth of the words sink into my head and my heart, and suddenly a thought came to me that was truly a break-through moment.  I thought about how excited I've been to go home and how that return to normal life will be such a precious experience after everything we've gone through.  I realized how my level of thankfulness and appreciation will be through the roof, because of how painful this time has been.  Because I will have experienced this contrast, this season of dark and painful times will make that homecoming so much brighter.  And THEN, I realized something even greater.  If I think THAT homecoming is going to be great, how much greater of a homecoming, how much sweeter and richer will it be the day that I walk into Jesus' presence in heaven?  After experiencing the depth of pain that this life can bring, how much more JOY will I know when I leave this world and step into the Kingdom of Heaven, when God makes me new, and makes Caleb new, and there will be no more tears or death or painful joints or sick hearts.  And in that moment, I was so overwhelmingly thankful for how hard life has been at times.  I was so thankful that this life hasn't been smooth and easy, because it's those of us who have suffered the most that can also know the deepest joy.  

And my heart swelled and I praised God at the top of my lungs and laughed and cried as I worshiped, and people passing me in their cars probably thought I was out of my mind.  And I was!  I was out of my mind with the thought of how beautiful our Savior is, and how much He really has saved me from... my sin, my hopelessness, my fear, it's all swallowed up by this love that is so much greater than I even understand.  All I had to do was think about His love for a little bit and I remembered that I don't live like those who have no hope.  And I've been smiling ever since.

The hope I have in Him doesn't erase my pain, but it changes it. It makes the pain bearable and it gives me the perspective that this is all so temporary.  The Bible says our lives are like the morning fog, which is here a little while and then it's gone.  What's amazing to me is that God doesn't just say, "Sorry this sucks, but someday you'll be with me in heaven so just endure it."  Instead, He comes right alongside me NOW, in THIS life, and gives me a joy and peace that has nothing to do with what I'm going through.  Who wouldn't want that?  Who wouldn't want Him?  

It's so strange to me that anyone is even reading these little blog entries... but if you are reading this, let me tell you that I'm so thankful that you care about Caleb and about us.  Thank you for keeping up with what's happening in our life.  And I hope that you'll forgive me for not being able to shut up about Jesus.  I like talking about Caleb, but I love talking about Jesus.  If you know Him too, then you understand.  And if you don't know Him, or you thought you did know Him and yet haven't experienced this joy and peace that I'm talking about, by all means let's chat.  I mean it.  March yourself up here to Room 4158 and let's talk.  I'm thrilled people are praying for Caleb, but the reason I write about his story is not so you know the details of our life; it's so you'll hear the REAL story I'm writing about, the story of a God who is worth following.  You might be praying for me, but please know I'm praying for you too.

Happy thoughts

I love my husband.  I always knew that I had married up, but it's more obvious than ever.  I feel like a hot mess about 90% of the time, but he is so steady.  I know he has his moments where he feels stressed here, or wishes we had someone else's life, but he is leading our family through this time with a level of patience and strength that should win him some kind of award.  Daniel went home last night for the first time to spend time with Jonah, and I immediately wished he was back here.  When I went home, he was sending me texts saying things were great and to take my time.  When he went home, it took me about 5 seconds to be anxious for his return.  I am so thankful for him.  Best decision I ever made.

Today has been pretty good; it's always good when all four of us are back together.  Caleb has been smiling and playing a lot and I breathe easy when he's in a good mood.  I realized today I have this constant fear of Caleb getting depressed.  It came out of my mouth while we were eating lunch and Daniel reminded me that he's not even 2 years old, and that even if he's cranky while we're here, he won't remember this time in his little life.  That helped.  As a mommy, it breaks my heart that the rest of us can get out of that hospital room when we need to, but Caleb can't.  Please pray for his little mood, for his spirits to stay up, and for him to be easily distracted when he starts to get fed up with his reality.

Here's another thing to pray for.  As my close friends know, it has been my dream for years to have a bigger house.  Daniel and I have lived in our wonderful, happy, little house for 8 years and we love all 900 square feet.  However, I have always dreamed of having a home that was large enough to have friends over, to have a big table with a crowd around it, and plenty of room for my kids and their friends to run around.  Just a few weeks ago, an opportunity came to us to possibly buy a home that would be my dream house... and then we went to the hospital.  In yet another example of the generosity of others, there are a few people working for us to sell our house while we live in the hospital.  I visited the "new house" while I was home this week, and I teared up just picturing my family all home together there.  I had this picture of a fire going in the fireplace, Daniel playing with the boys on the floor and me in the kitchen cooking supper.  When I have a hard day, I often picture that little scene in my head.  It almost feels like too much to hope for; for Caleb to have a new heart, and all of my family to be home together in a new house that's a dream come true.  If I can trouble you for another prayer request, would you pray that God would bless us with this new home?  And if you know someone who might be interested in a sweet little 2-bedroom house, let me know. :) 

So, to summarize, here's our prayer request list today:
1- Pray for Caleb's spirits to stay up.
2- Pray for me to rest when I need to, and to be able to get out of here sometimes and get refreshed.
3- Pray for our house to sell and for the blessing of a new home.
4- Pray for Caleb's perfect heart to come as soon as possible!

Day 11... and counting

At some point, I'm going to need to go shopping and get myself some new pants... apparently having a sick child has become my unintended weight-loss program.  It's also my Look-10-Years-Older-in-10-Days program, so I wouldn't recommend it.  What can you do?  Someday soon I'll eat and sleep better and maybe not look so haggard.  I've got bigger things to be concerned about anyway.

Today was a good day and I really needed that.  Caleb has been stable and in good spirits for the last several days, and Daniel and I decided it was safe(ish) to start taking turns going home.  I got to go first, and last night I went home with Jonah and slept in my bed and read a newspaper and stayed in my jammies until noon.  It was absolute heaven... except I missed Caleb so much. Daniel and I talked on the phone or texted about every hour in the time I was gone, which was less than 24 hours.  I decided to take Jonah on a lunch date, and I told him he could pick anywhere he wanted to go.  He thought about that for a second and said, "Mommy, where's your favorite place?"  I said, "My favorite place is Pizza King."  Jonah said, "Then I pick Pizza King because I love it when you're happy."  I started to tear up, as I'm in the habit of doing about once every 5 seconds, and hugged him until he was sick of me.  We had a wonderful date that included playing Michael Jackson on the jukebox and eating 7 breadsticks between the two of us.

I came back to the hospital this afternoon, so ready to see my other boy.  He was doing great.  When I walked into his room, Caleb clapped and grinned and said, "Mommy!" and I teared up again.  Why I even bother putting mascara on in the morning, I don't know.  I have prayed and prayed that Caleb's spirits would stay up, that he wouldn't get depressed being here but would be calm and happy.  And God has been answering that prayer, because that kid is hamming it up and has every nurse around here wrapped around his finger.  I will never be able to parent this child when we get home because he totally thinks it's normal for people to bring him "goo-kies" any time he asks.

We're doing ok.  Daniel and I have our moments where one of us is on the verge of a breakdown, but we encourage each other and keep going.  We're accepting our reality and looking SO forward to that moment when we get a phone call saying we've got a heart.  People have been asking questions about the transplant process- here are a few details.  We can get a heart from as far away as 1500 miles.  They gotten hearts from as far away as Phoenix, Las Vegas, and Toronto, Canada.  There is a team of 3 surgeons here who do the transplants; at any given time, 2 of them are available.  When we get a call that there's a heart somewhere, one of the surgeons takes off in a Lear jet (no joke), goes and surgically removes the heart, then brings it back to pass it off to another surgeon, who goes into the operating room and will put it into Caleb's chest.  The amount of time between the heart being removed from one body and placed into Caleb's body has to be less than 4 hours.  Now that Caleb is officially on the transplant list, we could get the call any minute.  And when we get the call, we go right then and Caleb goes almost immediately to the operating room.  It's a pretty amazing process.

Things to pray for today:
1- Pray for Caleb's spirits to stay up, for him to find happiness in his routine here.
2- Pray for the perfect heart to become available as soon as possible.
3- Pray for our marriage to be strong and for us to be able to support each other and somehow still invest in our relationship in the midst of this craziness.

Much love to you all- if you're wearing your Praying for Caleb t-shirts or bracelets, please post your picture on facebook.  We LOVE to see that!

Good morning!

It's been a good morning already... who doesn't love pancakes?

We are praying, praying, praying for this sweet boy to have a new heart soon!

LIST!

Amazing news! As of an hour ago, Caleb is officially on the list for a heart transplant! This is HUGE!  He could now get a heart any time and we need to PRAY that the perfect heart comes available as soon as possible! Lord, you hold the future in Your hands and the timing of all things is Yours. We trust you to provide!

Has it really only been a week?

It blows my mind that it was a week ago right now that I was filling out paperwork to admit Caleb to the hospital for a heart cath... it feels like a month has passed.  The days are inching along and at times I feel like I'm going to lose my mind in this hospital.  I knew I would have good days and bad days (or good hours and bad hours).  On Tuesday night I started to feel like the walls were closing in on me and I couldn't possibly imagine doing this for an indefinite amount of time.  And I started thinking about how even if a new heart comes, there's no guarantee his body won't reject it.  And the fears and worries and depressing thoughts started to build and build into an oppressive weight on my shoulders.  But yesterday people started praying for me, and I felt a peace with me throughout the day and by the evening the oppressive weight was lifted and we had a great night.

Caleb is doing really well.  It is OBVIOUS the grace of God is on him.  He is laughing, playing, a happy little guy.  The nurses think he's adorable.  And they are correct.  There is such a huge improvement in his mood and of course that makes me relax.  We have moved up to the Heart Center and this is where he'll be until he gets a heart.  We had some great news yesterday... Medicaid is going to cover the transplant!  His condition qualifies him as "disabled" and the Riley people worked their magic and got Medicaid to speed things up.  Caleb should be able to be officially on the transplant list very soon.  

We also had another great moment this morning... the Transplant Coordinator, Debbie, whom we now meet with a lot, talked to another couple whose son, Logan, is Caleb's age and just received a heart transplant in May.  They were here today for a checkup and Debbie asked them if they would meet with us.  It was wonderful.  Their names are Justin and Holly and their kids are the same age as ours.  Their little guy, Logan was amazing; he was running around the room, looked so strong and healthy and it made my heart swell with hopefulness that Caleb can have that energy someday too.  Holly told me how before his transplant, Logan was tired and weak and never able to run or climb... just like Caleb.  Within days, he had more energy than he'd ever had and now he looks like a normal little 2-year-old.  Meeting them was so encouraging and I'm looking forward to getting to know them better.

Today is a day where it's just so apparent that people are praying for me.  Your prayers keep me from being afraid and weary.  God keeps giving me strength and endurance even when darkness tries to creep in and steal my joy.  Keep the prayers coming- they really do make a difference in our life.

Prayer Requests for Today:
1- Pray that the listing process moves quickly and that Caleb can get on the transplant list right away
2- Pray for us to not get discouraged and lose hope
3- Pray for Jonah to feel secure even though his little life is so disrupted right now.  Pray for us to find time to connect with him.

I'm wearing my Pray for Caleb bracelet proudly today and thinking of all the amazing friends who are supporting us and praying for us.  We love you all!  And thanks John Dugan for the great bracelet! 

One day at a time

Every once in a while, Daniel and I stop and take a "thankfulness inventory".  We take turns saying things we're thankful for that day.  It is never hard to get a long list going, no matter how crappy or scary the day's circumstances have been.  For example, last night we got into the Ronald McDonald House!  We are able to stay there for the rest of the time Caleb is in the hospital, and it's really nice and only $15 a night.  And Jonah is able to stay there too.  That's one thing to be thankful for.  The biggest thing to be thankful for today is that Caleb has had two stable days in a row.  He is eating, talking, and even smiling!  When the doctors came in for rounds today they were very pleased with how well he's recovered from his cardiac arrest last week.  Thank God, there was no lasting damage to any of his body's systems.  

Caleb is stable enough to move out of the intensive care unit and up to the Heart Center, where he will spend the rest of his time here while waiting for a new heart.  We are very close to getting the approval from insurance and if all goes well, Caleb will officially be on the transplant list this week.  Our life will consist of a lot of waiting and praying over the next weeks.  We met with a member of the transplant team yesterday, a nurse named Debbie, who gave us some more information.  Here at Riley, they do on average about 5 heart transplants a year.  She said one child last year waited only a week for a new heart, and another waited 4 months.  There's no way to know how long it will take.  We are just so thankful that Caleb has stabilized to the point that he can get out of the ICU and can be in a much better room, where he will be able to get up and play some.  That will be good for morale, because he definitely wants to get up and out of this little room.

We are encouraged, and it's wonderful to have some uneventful days, but we know there are many more challenges ahead.  For now, we're enjoying some quiet time, some time to just be bored.  Boring is good!

Things to pray for today:

1- Pray for Caleb's spirits to stay up.  Pray for him to feel safe and secure, and to actually be able to laugh and play.

2- Pray for the insurance company to quickly approve us so we can get on the transplant list.

3- Pray for us to have wisdom to discern what to do with Jonah.  Pray for us to have as much time as possible as a family.

We love you all and are forever grateful for your support!

Ups and Downs

Good morning from Riley Children's Hospital... I am sitting next to a very precious little boy right now who just fell back asleep while watching Finding Nemo.  It's really quiet in this room this morning so I thought I'd take a second to send out an update.  

Yesterday was a day with extreme highs and lows.  In the morning, Caleb was awake and talking after coming off the breathing tube the previous evening.  We were so encouraged by that step, to see Caleb able to breathe on his own.  I even got to hold him for the first time since Thursday and it was amazing. For a few hours, we felt almost blissful... until the middle of the afternoon.  Caleb's oxygen level started dropping, and dropping, and wasn't going back up.  Everyone rushed in and they put a bag on his face and tried to get his oxygen to come back up but it didn't for several minutes.  The nurse was standing right there with the epinephrine while the flurry of doctors and respiratory team tried to get things back to normal.  Fortunately, after about 10 minutes, he settled down and the numbers started going back up, but it was terrifying.  We were so shaky and so was he- it really scared him to see everyone rush in, and of course for Dr. Raj to put the oxygen bag over his face.  After that event, it was so hard to remember that only a couple hours before that, we were in great spirits.  It just reminded us that even though Caleb is fairly stable, his heart is still incredibly sick and he needs a new one desperately.

The rest of the evening was uneventful, and Caleb went to sleep at about 8 and slept all night, 12 whole hours, so that was great.  His oxygen steadily improved all evening and has been in the high 70's since then, which is really good.  This morning, he actually looks better than he has in a couple weeks, which makes me realize just how sick he really was at home and we didn't even know it.  His puffy face is totally back to normal and his lips are pinker.  He looks like a different kid than he did on Wednesday night when we were trick-or-treating... I still can't stop thanking God that his heart didn't stop sooner.

Today will be another day of rest for Caleb.  Tomorrow we will have a lot of meetings with doctors, insurance, and who knows who else to get Caleb on the transplant list as soon as possible.  He should get listed quickly, and then the real waiting begins.  In the meantime, we have to pray fervently that God would sustain his life until a new heart arrives.  I had really hoped we could just coast until he gets a new heart, but yesterday he proved to us that he is still fighting for his little life.  We have to choose, each day, to celebrate that day's successes and brace ourselves for the day's challenges.

Daniel and I are doing fairly well... we're tired of course, but we're glad we have each other to go through this together.  The hardest part is the ups and downs; they are excruciating.  We get great news, we get awful news, and back and forth.  Just when we relax a little, he has an episode.  Being here takes more patience and strength than I feel like I can muster sometimes, but it helps to just focus on one step at a time.  At the end of each night, we're reading Scriptures over Caleb and praying for strength for the next day and for God to help us keep fear out of our minds.  Each time we go to God asking for help, He has given it and we get glimpses of being refreshed and uplifted.  We are actually sleeping at night, and eating when we can, and doing our best to take care of ourselves.

Here's what you can pray for specifically today:
1- for Caleb's sats (oxygen) to stay up
2- for Caleb to feel as comfortable and secure as possible
3- for our insurance company to agree to cover the transplant- which is the first step towards Caleb getting a heart

We send our love from inside our 12-foot-by-12-foot-hospital-room-home.  I think it's safe to say that I'll be able to update this blog regularly so keep checking in! 

Well here we are...

It's probably about time I sent out a message to the outside world.  Let me just tell you how indebted I feel to you all for your prayers, support, and encouragement.  We feel your prayers, I assure you.

Yesterday was an intense and eventful day.  Caleb was scheduled to have a heart cath yesterday morning, but when he got into the cath lab and started the anesthesia, he went into cardiac arrest.  Fortunately, after 3 minutes they were able to revive him but of course everyone realized his heart is very weak and sick, more so than we knew.  We are so thankful that he didn't go into cardiac arrest at home, or while we were out trick-or-treating... thank goodness it happened here, and now.  

Over the course of the day, it became apparent to everyone that Caleb's heart was no longer even strong enough to consider more surgeries or repairs.  The only real option for him is to have a new heart altogether.  St Vincent's does not do heart transplants, so we've been moved to Riley Children's Hospital.  Right now, Caleb simply has to recover from what happened yesterday; they also need to make sure no damage was done to his other systems.  So far it looks like no permanent damage has been done but they'll be doing some tests to be sure of that.  Caleb is very sick and weak but he is stable for now.  The immediate goals for him are to be able to take out his breathing tube and see if he can breathe on his own.  If that is successful, the next step is to stop his sedation and allow him to wake up.  I am dreading that step.  He has started to wake up a few times on his own and it's awful to see how scared and upset he gets, even in just a few short moments. I know it's a necessary step in his recovery, though, and we'll focus on that.

The process of getting a heart transplant is a huge ordeal.  We met today with the transplant team for the first time and we were encouraged because we realize it's going to give Caleb another chance at life.  However, it's a long process and we have to walk one step at a time.  Caleb isn't even on the list yet but the process has begun and at the start of next week, we'll be moving forward.  For now, the doctors are focused on letting him rest and recover for the weekend and working on the initial paperwork to get him on the transplant list.  We will be moving in to the Ronald McDonald House here in the next few days and we will get to stay there for the duration of Caleb's time here.  

This is a crazy time, and we are mostly just trying to keep going one step at a time.  We are so thankful he is still alive and that right now it looks like there is hope that he could receive a transplant down the road.  I know this update is succinct, but I at least wanted to give some basic details.  We have moments of despair and moments of total peace and I think that's normal.  The ups and downs are intense but we're really focusing on one day, maybe even one hour, at a time.  

The support and love we feel from everyone is so amazing... it's keeping us going.  Even in the worst moments, God has helped us to feel His presence.  We are focusing on the things we have to be thankful for.  

Things to pray for today:
1- that Caleb would be able to come off the breathing tube successfully
2- that Caleb would stay stable
3- that God would give us peace of mind to handle all the information we're receiving right now

Much love to you all from our family.  We'll be more regular with updates soon, once we get settled in here.