Monday, September 30, 2013

Out of ICU!

Woo hoo, we're out of ICU! Caleb is happily back to his "home" on the Heart Center and he has been hamming it up for all his nurses.  He is not in the same room as before, and I wondered if he would mind but he doesn't at all.  He's no fool; he knows anything is better than an ICU room, and all he really needs is his harem (ha, ha) of nurses that he loves so dearly.  He's in such a good mood, which makes my heart so happy!

Caleb has been peeing like a champ and puking way less.  And he has been eating more than he's eaten this whole year!  Tonight he asked for macaroni and cheese and a ham a cheese sandwich (it was a cheese theme) and I couldn't believe that the moment I put it in front of him he grabbed a spoon and dug in.  He took 6 bites of mac and cheese, 5 bites of his sandwich and some chocolate milk.  This is a great meal for him!  That was just a couple hours ago and he is currently eating a snack too.  The transplant team says this will be the biggest hurdle for Caleb, and what will most likely determine how long he has to stay in the hospital... he MUST eat.  So I beg you to pray that his appetite grows quickly and stays consistent!!  Praying boldly for my boy to be hungry!!

We had our first education session today about how to care for Caleb post-transplant.  We have to meet every day in the afternoon to learn all his new medications (around 10) and what our daily life will look like when we go home.  We're learning a lot and I feel very confident that we can handle this.  I thought I would be more overwhelmed and I'm not.  I know whatever we have to do to care for Caleb, we can do it. 

I'm really looking forward to Jonah being back with us.  He misses us and he REALLY misses his brother.  My in-laws brought him to visit us during Caleb's nap yesterday, and we got to spend some time in our apartment at the RMH with him.  When Jonah got there, he burst through the door saying, "Caleb, Caleb!" as he ran around looking for him.  When we explained that Caleb was still in the hospital he got upset; he had assumed Caleb was with us.  He perked up pretty quickly but it was hard to help him understand how temporary this all is.  If someone could just figure out a way to explain to my 2-year-old and my 4-year-old that this will only last a few more DAYS, that would be great. :)  We're getting so close to the end of this hospital stay!

That's all for tonight.  I'm so ready to put on my pajamas and go to bed early. These days are full of joy but they are exhausting.  I need to go rest now as Caleb is heading to bed.  Your prayers are being answered so keep them coming!

Saturday, September 28, 2013

My fighter: 3 days out

You would think that after being the hospital for an entire year that it would be easy to wait just a few more days.  Easier said than done!  I do have a lot of patience for this, but it's hard to see Caleb groggy and uncomfortable and not quite himself.  I'm ready for this boy to laugh and play and run around in a  Batman costume.  Caleb hasn't been talking a whole lot and I miss his little personality.  The physical therapist told me that is normal... she said for Caleb to have a conversation feels like it would for us to try to have a conversation while running.  It's just easier not to talk much right now after open-heart surgery.  That made me feel better.  I know he's partly quiet too because this is an unfamiliar environment and it's hard to explain to him that it's just temporary.  He has asked several times to "go back to his room".  I tell him we will soon.  And if he only knew where we were going after the Heart Center... he has no idea what awaits him. :)

Caleb did perk up considerably when he had physical therapy this morning for the first time since surgery.  He loved it and did everything they asked.  He even got out of bed and got to walk around his room, and he went beyond what they asked of him and tried to step up on a stool and get up in a chair.  Such a fighter!  We got a little kiddie chair for him and he sat in his little chair and watched Beauty and the Beast until we had to make him eventually get back in bed for a dressing change.  Getting to move around loosened him up and gave me a glimpse of his recovery.  He'll get there!

The team said Caleb will be able to go back up to the Heart Center by Monday, just 5 days after his transplant.  I know that will help his mood so much to be somewhere familiar, with his nurses he loves so much.  Right now his biggest issue is retaining some fluid.  I asked for prayer for Caleb to pee in my last blog and guess what?  An hour after I posted that, he finally peed!  And then last night he had gone a while without peeing again and we decided we were just going to keep praying. We stopped and prayed for a big diaper so he wouldn't have to get a catheter... and literally TWO MINUTES after we boldly asked God to help him get this fluid off, he filled his diaper!  As my dad said yesterday, now it's like God is just showing off.  The more I simply remember to boldly pray over every detail of Caleb's recovery, the more I see God answer.

Today we are continuing to pray for his excess fluid to leave his body (more diapers, God!) and we are also praying for him to eat.  Whether or not Caleb eats will probably be the biggest factor determining when he can go home.  He has been on IV nutrition for so long that eating is not a big part of his life.  We are praying BOLDLY that God would give him a huge appetite and he would blow us all away with what he can eat.  

Perseverance!  We can do this!  It is stressful in the ICU and I just wish Caleb could skip this recovery part.  But God has as much purpose for THESE days as He does for the days ahead, and as He did for the days behind us.  I'm praying that He would give me the ability to focus on TODAY.  Because He made today and it is a gift!

Friday, September 27, 2013

48 Hours Post-Op: News and Prayer Requests

Hello out there!  I forgot how different it is to be in the ICU.  We feel a little cut off from the rest of the world.  And all the machines are so loud and non-stop! But hey, we can do ANYTHING for a few days. :)  Caleb is doing great, the doctors are just thrilled with him.  In fact, he is doing SO WELL that they thought about letting him go back up to the Heart Center today.  What?!?  However, the Heart Center didn't have quite enough staff to handle a new transplant kiddo, and they look to be short-staffed for the next couple days.  So as soon as they can handle him, he'll be ready.  Wow.... this is all so amazing.  Who would have thought that the kid who waited longer than anyone for a heart was going to recover so fast?  He is a miracle.  

Caleb is more alert today and talking more.  He hasn't even needed any pain medications since last night.  I think we should go ahead and give him a little... I mean, I know he's super tough and says he has "no owies", but come on, Caleb, you don't have to impress anyone!  You are just 2 days out of a heart transplant. :)  He is still pretty calm and sleeping a lot, just resting and recovering.  He slept well last night, but as he gets more awake and alert he definitely has more opinions about what is happening to him.  That's normal of course.  His two issues we are praying for him, and ask you to join us in praying about, are these:

1) He is nauseous from the pain meds and has thrown up several times.  We are praying this will STOP right away and that Caleb would just feel better.  And we pray he will feel well enough to start eating.
2) He hasn't been peeing very much.  It may seem weird to you to pray about the contents of a 2-year-old's diaper, but I know that we can boldly ask God to make every part of Caleb's recovery go perfectly!  So we need to pray that he starts having wet diapers.

And, MEDIA ALERT!  Fox 59 News came to do a story on us today, and it will air  sometime today between 4:00 and 7:00, and then again tonight at 10:00.  And it will be on line.  Tune in tonight!  I guess we all just keep our tv's on Fox and hope we don't miss it.  

Stay tuned for more great news!

Thursday, September 26, 2013

Caleb has a new heart!

Look at my sweet son... sleeping calmly!  We are now 24 hours post-op and Caleb's new heart is beating stronger than his old heart ever did.  This new heart is the most beautiful gift from God.  Yesterday when the surgeon took out his old heart and put the new one in his chest, it immediately started beating without even having to be shocked.  And it was beating vigorously!  To think of how good he is going to feel in the next few days as he gets to fully wake up and start to feel like himself.  I sit here looking at him and I just grin this goofy grin all day long.  Caleb is a miracle.

I look at the monitors and can barely believe the numbers I see, numbers we have never seen before.  The surgery could not have gone better and now every doctor that looks at him says, "He's just doing great."  GREAT.  Doctors never say that to us!!  When we met with the surgeon immediately after surgery, when we sat down in that little room, I just cried and laughed as Dr. Rhodefeld went point by point, describing each aspect of the surgery as being perfectly smooth.  It was very different than other meetings with doctors that we've had in those little rooms, to say the least.  The last thing the surgeon said as we started to stand up and go back to give the news to our parents was, "You have a completely new little boy on your hands."  I can't imagine hearing more beautiful words.

Today is mostly a day of resting and recovering for Caleb (and for us).  He is still on pain medicine that makes him groggy so he mostly sleeps.  He wakes up for little periods of time, usually wanting a drink, and he'll stay awake for just a few minutes before peacefully dozing back off.  He is already totally off of oxygen support and breathing peacefully on his own with oxygen sats in the upper 90's.  I have been amazed at how calmly he has accepted this room and these new doctors and nurses in the ICU.  I fully expected him to wake up confused and distressed at his new surroundings and all the tubes... not at all.  He has been calm and polite, as usual, waving to people at the door who come by to see him and being totally fine with us going out of his room when we need to talk to someone or get some food.  He is so secure and safe here!  And it is another example of the grace of God that Caleb is so accepting of the hospital environment and staff.  Thank you God for giving my son a greater sense of peace than even I can provide him as his mommy.

Now that heart problems are mostly in our rearview mirror (stop for a minute and think about how crazy THAT is!), we are starting an entirely new journey as we learn about his immune system and what it requires to keep his body from rejecting his new heart.  Today he has started a 5-day course of medicine that is one of the "big guns" of immune suppression.  This medicine makes his white blood count (the cells that fight off illness and infection) go down to almost zero so that his body is not able to identify his new heart as "foreign".  As that treatment is going, the doctors will gradually introduce his new oral medications that also suppress his immune system.  Caleb will have a biopsy of his new heart in the next week or two to determine how successful these medications are being.  He will be on immuno-suppressants for the rest of his life, and that will mean some lifestyle changes.  We have a lot to learn!  We finished one marathon and now we are starting a brand new one that we know very little about.  But God has prepared us for this and we are taking each step with strength and joy!  What a gift we've been given!  What a crazy life we have!  

A couple quick points of interest:  
1) We can't talk on cell phones in the ICU, but we have our laptops for email and facebook.  If you call us, just know you won't be able to get a hold of us and we'll have to call you back at some point. 
2) We don't know anything about where his donor heart came from.  We aren't allowed to know any details at all.  We just pray for that family all the time, so grateful for their gift.
3) We should be in the ICU for several days before we are back up to the good old Heart Center.  Projected amount of time we will be in the hospital is about 2 weeks if all goes well.  Then Caleb will be discharged to stay with us at our apartment at the Ronald McDonald House for another couple weeks before we can go home.  We should go home just in time to get settled before Lucy is born!  
4) Yes, I am taking care of myself.  While Caleb was still on sedation meds, I went to the RMH and slept for 10 hours last night!  I am taking advantage of this time to sit a lot.  
5)  Jonah is doing great, he's staying at Grandma Joyce's and will get to see Caleb once we get discharged to the RMH in a couple weeks.
6)  Our biggest prayer request now is that Caleb's body accepts his new heart and that there will be no signs of rejection.  Yesterday they actually discovered he has developed another antibody in just the last few days that the doctors did not know about until after the transplant.  Fortunately, it is a very low level and it is not an antibody typically associated with rejection.  But they had to start what is called IVIG treatment to hopefully keep this antibody from causing problems.  They will check again in a week to see if that immediately cleared it up.  These stupid antibodies!  I am praying boldly that God would take this out of Caleb's body and we won't hear about antibodies anymore!  For now, the team is not really concerned but we won't really know if it's a concern until next week.

We can't thank you enough for all the love we have felt and the outpouring of support in the last day.  We have felt your care like a giant hug to us here in the hospital and we want you to know that we often thank God for all the people who care about our family.  I will try to update once a day or so, and post pictures too!

Monday, September 23, 2013

I want to hear from you

Whew... my busy speaking circuit (ha, ha) has finally slowed down.  And just in time, because I am at the point in my pregnancy where I am pretty fat and just want to be a lazy bum as much as possible.  In the last couple weeks, I have spoken at an IU Health Transformation Team Retreat (a.k.a., a conference hall full of people in suits who do important stuff for IU Health and who invited me to share our family's story at their quarterly meeting); I have spoken at the Pray for Caleb Rally; I have, with Daniel, been interviewed and videoed for the Ronald McDonald House, who are making a video with our story to be used at fundraisers; and I have spoken at the awesome Henry County Women's Retreat, which included making another video about our story.  I am now officially worn out and a little tired of hearing myself talk.  :)  Of course, I loved every opportunity, even though they have all been back to back, because I love when I get to shine a light not necessarily on our family, but on God who makes our story good and not depressing.  I hope I get many more opportunities.  But maybe not for a couple months.... first, I need to push this baby out.  Which will be soon!  Six weeks to go.

If you're wondering what on earth we're going to do if this baby is born and we're STILL in the hospital, join the club!  The answer is, we will just figure it out.  I never dreamed I would deliver this baby and then bring her "home" to.... the Ronald McDonald House.  But if that's what happens, we will be fine.  We aren't even stressed about it.  We're just really, really excited for her to join our family.  Baby Lucy is going to have to be able to go with the flow, just like the rest of us.  And she will, because she has no choice!  She's going to be tough and flexible, just like her awesome brothers.

At the Pray for Caleb Rally, Tisha Sledd prayed for that event to be like a tidal wave of grace that carries us to the finish line.  We are riding that wave of grace and have been encouraged.  God has given me the courage to keep asking that He would not only provide a new heart for Caleb, but that that heart would not even come from a transplant.  I am praying that God would miraculously heal his current heart, with no surgery, and I know that is a totally crazy, almost idiotic thing to hope for.  But I am hoping.  Whatever God does, I believe wholeheartedly that Caleb WILL have a new heart, some way or other.  

The Rally was a very special night for me.  It went exactly as I hoped it would go, and the feedback I have gotten from people who were there has blown me away.  Obviously many people had an amazing experience with God that night. For those of you who weren't there, I shared with the crowd that I was tired of praying these prayers of discouraged resignation, just asking God to help me get through the day instead of BOLDLY asking God to heal Caleb and make him well.  My prayers have shifted to ones full of hope and confidence and my perspective of God is changing; I believe He wants Caleb to be well, too.  I challenged everyone there that night to begin to pray boldly themselves, not just for Caleb, but about their own lives.  And from what I've heard, God spoke to so many people that night who have now begun to pray boldly too.  I want to encourage you, if you were there that night:  If a seed was planted in your heart, a seed of faith or boldness, protect that seed.  Jesus talked about this in a parable He told in Matthew 13.  I am praying that every seed God planted in our hearts that night would come to bear fruit.  Sometimes God speaks to us and we very easily forget, or get discouraged, or fail to obey what we thought He wanted us to do.  Those seeds are snatched up or blown away and sometimes they don't take root.  I pray for each of you, that whatever seed God planted that night in your life would take deep root and grow to completion, bearing fruit that lasts and lasts!  Don't lose heart if God spoke to you!  

In fact, please share what He spoke to you so I can pray for you and so we all can be encouraged.  I want to ask you who read this blog to do something for me; would you help me make this blog more interactive?  Meaning, I want to hear your responses to what you read and what God speaks to you through this blog.  I would love for there to be dozens of responses.  I want this blog to be more of a two-way conversation, a dialogue where people share what they're thinking so we're all encouraged.  So please!  SHARE WITH ME, and the other readers, what God has been speaking to you if you attended the Pray for Caleb Rally.  Leave a message on this blog, and give me some feedback.

I look forward to hearing from you!

Friday, September 13, 2013

A growing sense of excitement...

It's almost here! The Pray for Caleb Rally is tomorrow (Saturday) night!  You know what? I am super excited about this event because every time I think of it, I have the strong feeling that God will be moving powerfully that night. Can I ask you something? If you are a person who believes in the power and effectiveness of prayer, will you please come? I have a feeling that if you are someone who loves Jesus and believes He gives power to those who pray in His name, you are probably already planning to come.  This event is NOT a fundraiser, it is NOT just a night to gather and show your support... It is going to be a night of sincere praise and worship and prayer.  All are welcome, I just want to make sure people know this is going to be a worship gathering. And it is going to be awesome! Please, if you are coming, pray for the event every time it comes to your mind between now and then. Pray for God's Spirit to have full control and for all of us there to hear His voice. I will be thrilled if hundreds of people are there... But I will be more thrilled if EVERY person there, even if it is just a handful of people, come with a great sense of expectation that God will be among us and will hear our praise and prayers!

Start time: 6:00 p.m.
Location: First Baptist Church, 709 S. Memorial Dr., New Castle
If you have little ones (age 4 and under) that you would like to drop off in our childcare area, you are welcome to do that. We have a great group of young women who will be there to care for our kiddos through the service. However, you are totally welcome to keep your kids with you too! Jonah has already said he want s to stay with us and sing and pray. In fact, we were praying together today, and this was his prayer for Caleb: "God, please give Caleb a brand new heart, even before the doctors can find him one." Powerful prayer!

My hope is to hug and talk to every one that comes, which is why there will be a time to hang out (and eat some snacks!) immediately following the service. Please don't feel like you are bugging us, just because there may be a lot of people there!  We want to talk to everyone even if we have to stay a long time! We want to see you so stick around.

This is going to be God's night! We are going to be a part of something special and I hope to see you there!

Friday, September 6, 2013

No more runny noses!

I have been really encouraged to see God answer prayer this week.  When I last blogged, I shared that Caleb had a runny nose and a cough and we were concerned he was getting sick.  The very next morning he woke up completely fine, no symptoms at all, and when the doctors ran every test imaginable on his snot (that was pretty fun to get a sample of, and by "fun" I mean the opposite of fun), and every single test came back negative, including the test for the simple common cold.  Awesome!  Caleb has been in the hospital for 10 months and has never been sick, not one day, not one fever, no infections.  What a clear provision from God!  For other kids, getting a cold or flu isn't that huge of a deal, but for Caleb, it could mean huge problems... it could take him off the transplant list until he's better, or he could very quickly deteriorate since his heart is so weak.  But praise God, we saw a total turnaround in a very short time and I really think God just touched his little body.  

You know, I thought for a minute, God, if you can touch Caleb and so easily take away whatever was making him cough, couldn't you have just extended that touch to his sick little heart while you're at it?  The way God answers some prayers in seemingly obvious ways and other prayers not at all just baffles me.  But instead of being focused on what God has NOT done, I would way rather focus on what God HAS done, because that list is so long!  There is so much to be thankful for, every day we have with Caleb is a gift and a blessing that at one time we didn't think we would have.  I find God to be somewhere between super weird and incredibly frustrating sometimes, but I definitely want to focus on thanking Him instead of being ticked at Him.  Easier said than done, but I am committed to it!

It really is easy to miss the things God IS doing when there is something we want that we aren't getting.  It's really easy to be focused on the things we wish we had, or that we wish would happen, and completely miss all the ways God is at work in our lives.  I think so much of how happy or unhappy we are comes down to how thankful of a person you are.  I have learned a lot about what it means to have a lifestyle of thankfulness, and I can attest to the fact that being thankful in all things is the only way to be happy.  I'm actually going to be speaking at a women's retreat in New Castle on September 21 and the session I am leading is all about that very topic.  I'm really excited about it.  (If you live in the area, you should totally come to the retreat!  You can find information on facebook, there is an info page called Henry County Women's Retreat.)  I'll also be sharing some of my testimony about the last year during the main session in addition to leading a breakout time.  One of the really good things about going through what I've gone through is getting the chance to share my crazy life with other people.  The longer we're here, the more invitations we get to talk about our story.  Just this week I got to speak at an IU Health Staff Retreat to a conference hall full of people in suits... it was a privilege to talk about Caleb and hopefully motivate them all to do their jobs really well. :)  And in 2 weeks, the Ronald McDonald House is going to be making a video with our family, interviewing us about our story to create a video to use with all their donors.  Completely unimportant side note: I REALLY wish they would have put me in a video BEFORE I got so pregnant.  I'm totally going to have a double chin in that video, I know it.  But oh well.  

God has been working on my discouragement the last few days, mainly through my time reading Scriptures.  I have been reminded through my Bible, and through the encouragement of a couple friends, that my hope doesn't actually come from Caleb getting a new heart.  My hope is in Jesus and my citizenship is in heaven.  Even though this world feels like all there is sometimes, I remembered this week that it's not; my real home is waiting for me in heaven and THAT is a thought that can lift me out of dark moments.  Still praying for perseverance!  Still praying that God would help me keep my eyes on Him.  Still feeling at times like I have reached the absolute end of my rope, but that's when God replenishes me and lifts my head.  He has never once left me- and for that I feel like I owe Him everything I have.   

Sunday, September 1, 2013

Needing a fresh dose of hope!

We have the first full week of our new schedule under our belts, and it was made especially interesting when both Jonah and Daniel got very bad chest colds.  Fortunately Jonah made it to his first day of school, but Daniel couldn't go to Caleb's room for a few days and that made this week a doozy.  When we finally all got back together on Thursday night (the first time the four of us were together since last Sunday), it felt like such a relief to have all my family under one roof, even if that roof is the roof of a tiny hospital room.  The week went pretty well!  Caleb seemed to do fine with each of our absences, Jonah absolutely LOVES preschool, and we survived going back and forth.  I think this will be manageable.  It actually felt nice to go home a little longer than usual, but going home always comes with a small sense of melancholy; it never feels quite right to be there when Caleb can't be there too.  I kept myself busy, trying to make some semblance of a nursery for baby Lucy out of one of the spare rooms that had just become a catch-all for leftover boxes and junk from the move.  We have "lived" in our new house for 6 months, but we have only slept there about 20 times, so we're still settling in.  I tell myself I have some time to get Lucy's room together.... and besides, winning the award for Martha Stewart's Most Amazing Nursery is just not on my list of things I care about right now.

Last week we had some interesting meetings with our doctors.  We kept this mostly to ourselves until the decision was final... but for a couple weeks our team was exploring the idea of us taking Caleb home to wait until he gets a new heart.  I know, you're probably thinking the same thing I thought when this idea was first forming... I thought it would be amazing.  I really respect our team here at Riley; they are truly trying to do everything they can for our family and for Caleb and they did a lot of work just to make going home an option for us.  Unfortunately, as the picture became clearer of what that would entail, we knew it was not the right decision, and Caleb was not strong enough to do this.  Long story short, it couldn't happen.  I had known it was never definite, so it didn't devastate me to know we weren't going home yet.  Plus it gave me a lot of peace that Daniel and I were totally on the same page, and our team was relieved when we said "thanks, but no thanks".  Still... I had just started to daydream about actually being in our house, and it has taken me a little time to get over that disappointment.  

Since then, a sense of resignation has been in my heart, and not a good resignation.  Even though I know this isn't true, it felt like that was some kind of last-ditch effort and now we have nothing to hope for.  When we were still in the process of seeing if Caleb could go home, I had searched for some other moms who have taken their children home while waiting for a heart.  I am in a facebook group for moms of heart transplant kids, and I posed some questions and got some great responses.  I actually found a mom whose son waited for a new heart for 18 months and another mom whose son waited 27 months, both of them mostly from their homes.  At first that information encouraged me... it was like, OK, there are other families out there who have waited that long and still got a heart, we can do this!  But the more I thought about it, the more I felt like, holy crap, that's going to be us.  We're going to be one of "those" families who wait some ridiculously long time.  I feel like we're going to be here for a year.... or 2 years... or forever....  Daniel has pointed out to me, many times, that just because SOMEONE, SOMEWHERE in the US has waited that long doesn't mean Caleb will, and I know in my head that is true.  But right now my mind is struggling to overcome the feeling that the end of our time in the hospital is nowhere in sight.

While I'm sitting here typing this, I just heard Jonah happily tell Caleb, "Someday, Caleb, when you get better, you're going to get to go to the REAL fireworks on July 4th.  And maybe you'll even get to let some off."  I am so thankful for Jonah's presence, he is always so optimistic and cheerful as he talks to Caleb about the outside world.  I think the Pray for Caleb rally is coming at a good time.  My hope needs to be renewed.  I need to believe that my son is going to get better.  I need to remember, in my heart and not just in my head, that God has a plan for Caleb and He promises that plan is good.  

I look up from this computer and see the boys playing and I long for them to be free to run and play outside together and for Caleb to get to see all the things Jonah tells him about.  And I realize that they are really happy little boys, who love their lives and don't feel like they're missing out on anything.  Today they played Batman on the floor and wrestled with Daddy and watched a movie and slipped in a couple of unprompted hugs.  And I know it's just me that feels like I'm missing out.  Perseverance!  I need perseverance.  I think I will focus my prayers on that, and ask God to help me not lose hope.  And I'll be encouraged to know that in just a couple weeks, I will be surrounded by many people who love and pray for my family, and I'm excited about that.  Hope I see you there!  And thanks for your prayers this week; those prayers carry us through each day and help me keep my head up!  

Also, could I trouble you for a specific prayer request for Caleb today?  Caleb has his first cold in the entire time we've been in this hospital (10 months today!).  It doesn't seem to be as bad as what Jonah and Daniel had, but he has a cough and runny nose.  Please pray that he does NOT get a fever or get anything worse than what he already has- if he gets very sick, he'll have to go off the transplant list for a few days.  Pray for Caleb to get better quickly!