Wednesday, October 23, 2013

"Normal" life

Tonight I took Jonah out on a date, just the two of us, to spend a little quality time together.  Tomorrow is his 5th birthday and we needed some time together anyway.  He was SO excited and said he wanted to wear "something handsome, not something John Deere, but something nice".  I don't know why he made that comment and believe me, it is NOT a reflection of how much he enjoys dressing like a farmer, because he tries to wear his Carhartt overalls most days of the week.  But I guess tonight was special and he informed me that I should really think about what I was going to wear, especially my shoes.  This was a bit problematic since I am at the point in my pregnancy where I have exactly 3 shirts that fit and I exclusively wear leggings or sweat pants.  Apparently I passed the test because he said I looked beautiful and opened the door for me.  He chose Bob Evans for the restaurant, both because pancakes are his favorite food and because, according to him, "it's the only place to go for a date in New Castle."  When we got there, he informed the hostess, unprompted, that he was on a date and that his birthday was tomorrow and when we were seated he asked me to sit on the same side of the table.  We sat on the same side of the booth at Bob Evans at 5:00 on a Wednesday like some elderly couple.  We both got pancakes and played tic-tac-toe until our food came.  It was a pretty great way to spend an evening.

Our home is louder than it's ever been and I keep waiting for the boys to get used to being home together but they haven't settled down since the day we first got here.  They wrestle and run and scream and laugh and throw pillows at each other all day long.  They now get up at about 6:00 every morning, Caleb first and then I hear him waking up Jonah and they go straight to their play room.  I pray this is a combination of Caleb being on steroids, which makes it hard to sleep, and the newness of being home.  I have asked God for a lot in the last year, but I still feel ok about asking him to make my kids sleep until at least 7:00.  At least for a couple days before their little sister comes into the world and takes what little sleep time I have left.  

Lucy is coming so soon... I had a doctor appointment yesterday and actually scheduled a c-section for next Friday, November 1.  Yep, she is going to be born exactly one year to the day after Caleb got admitted to the hospital.  I couldn't make this stuff up, people, this is the craziness of my life!  What a way to bookend this past year.  If someone would have told me all that was going to happen from November 1, 2012 to November 1, 2013, I'm sure I wouldn't believe it.  In just 9 days, it will truly feel like we have concluded this season of our life with a giant exclamation point.  Sometimes it feels like I am living in some overly dramatic Lifetime movie.  I think I'm just ready for some peace and quiet now.  Maybe we can burn through some months with no major events to speak of.

Caleb is doing great.  We have been going to Riley once a week and so far, so good. His first biopsy went well, and so far there has been zero rejection.  His next biopsy is in mid-November and we just continue to pray!  He starts physical therapy next week and already he has made huge strides just since we've been home.  He can go up and down the stairs with ease by himself and he can now climb onto any piece of furniture in our house.  He is THIS close to being able to run.  He sure tries!  He is happy all day long, thrilled to be in our house.  I wondered if it would bother him to have to go back to the hospital each week, but it really doesn't.  Although he does ask frequently throughout his appointment if we're "almost done" and if it's "time to go home".  He doesn't mind visiting, but he sure as heck doesn't want to stay.  Our team is thrilled with his progress, thrilled that he has an awesome appetite and energy level.  His only issue has been high blood pressure at times, which is a side effect of some of his meds.  We've been tweaking some things to control it and the doctor doesn't expect it to last for long.  If someone peeked in our window and saw Caleb playing, they would never believe he just had a heart transplant 4 weeks ago.  He is a totally normal 2-year-old.  And he is so much fun and full of life.

I think about our donor family a lot.  I think about how all this amazing stuff that has happened to Caleb and to our family is all because of them and their decision, during the worst experience of their lives, to selflessly donate their child's organs.  I hope that someday we can know each other.  Until then, I pray for them and think about them and wish I could let them see the miracle that they have given us.  

Thursday, October 17, 2013

Home! We are HOME!

It is taking me some time to process the giant life change I am in the middle of right now.  On Tuesday afternoon, one day shy of three weeks after his heart transplant, we got to bring Caleb home.  And it was one of the happiest, and most surreal, days of my life.  We finished packing up our apartment at the Ronald McDonald House, where we've lived for an entire year, and our van looked like the Beverly Hillbillies.  We squeezed our two boys in the back and drove off like four goofballs, singing and laughing and clapping and SO excited to go home together.  We stopped at a Starbucks drive through and bought cake pops to celebrate.  I was too happy to even care about the mess that accumulated in the back seat!  

There was a "welcome-home" parade of people lining the streets leading to our house, people holding signs and waving and cheering and crying and we did the same in our car.  We even opened the doors of our van so people could see Caleb and he could see them.  It was cold and raining and there were horns honking and kids jumping up and down and SO many pictures being taken... and I felt like our community, our friends and family, were giving us huge hugs as we returned.  The newspaper was there and the tv people were there and it was another of those moments where I thought, I never would have chosen to go through all this, but look at the experiences I have because of it.  

When Caleb walked into our house, HIS house, for the first time, he was in awe.  He walked from room to room with excitement, constantly exclaiming, "Look, Mommy!  Over here, Mommy!  Let's go in this room, Mommy!"  I have a couple videos to post of his reactions and I will put them on this blog soon, when I can go somewhere with faster internet connection. :)  My favorite moment was when he went up the stairs for the first time... when he got to the top, which took a little bit, he stood up and said, "Ta-da!"  He knew it was a big deal.  And it was.

The first night home was so sweet and the first couple days since have been busy, but not chaotic.  It feels SO good to be here that my joy and relief FAR outweigh the new schedule of medications I have to maintain.  I know it will get easier and easier, and it honestly feels like such a small price to pay to have Caleb alive and strong and healthy.  This is what it looks like when we set out the meds each night to draw up all the syringes for the next day:

And here's why I don't mind it one bit:

I look forward to posting more pictures of Caleb exploring and enjoying his new life... As his mother, it brings me happiness I can't even describe to watch him delight in his new environment.  Every little thing is a joy to him.  Taking a bath, walking in the grass, rolling around on the floor wrestling with Jonah, and climbing up the stairs by himself... he takes it all in with so much enthusiasm that it motivates me to enjoy these small moments in life, moments that would seem mundane to most people but feel like Christmas morning to us.  We are having the time of our lives, just being together in our house.  And I just can't get used to the fact that I really am here, for good!  I don't have to pack my dirty clothes in a bag to take back to Indy because I'm going to be here tomorrow, and the next day, and the day after that.  And my son is healthy, and happy, and going to have a good life.  This is a reality I just didn't know would ever happen and now that it's here, I refuse to have a "this feels too good to be true" attitude.  This IS true, we ARE home, Caleb IS going to grow up and live his life and so are the rest of us.  There will be no cautious waiting for the bottom to fall out.  I have a new reality now and I thank God all day long for what He has done and the way He has sustained all four of us.  Any other kind of thinking is disrespectful to the goodness of God.  He has given us a gift and wants us to enjoy the gift, not question how long it will last.  I know our future is still unknown and I understand very well that problems could develop at any time.  But I won't waste my life and my blessings by allowing a disclaimer to my happiness that says, "Well, things are really good now, but..."  None of us know what tomorrow will look like, but I know that today was freaking great and that's enough for me.  

Tuesday, October 8, 2013

Life outside a hospital= REALLY GOOD!

Oh man, is my life good!  What an amazing past few days!  Caleb got discharged from the hospital on Sunday afternoon and we are having the time of our lives.  I can’t believe I worried that Caleb would struggle with leaving… I thought he would be overwhelmed at the change of environment and maybe anxious being in a totally new place.  I was so wrong!  All day Sunday, he told everyone he saw that he was leaving and when the time finally came to actually walk out the door, Caleb was clapping, excitedly pointing out every new thing he saw.  “Wook at all da cars, Mommy!  Wook at da bird, Mommy!  I wuv our car, Mommy!” and so on.  He literally did not stop talking for about an hour, he was so crazy happy and enthusiastic.  Daniel and I could not stop ourselves from crying as we watched our sweet boy take in the outside world.

We went over to our apartment at the Ronald McDonald House where we will be staying for the next 2 or 3 weeks.  Caleb can’t go all the way home quite yet.  This is a period of time where he will go to the hospital for check-ups (what we call “clinic”, where he gets blood work and echos and we meet with the transplant doctor).  We will be adjusting meds until all of his levels are stable before we can go home.  Also before we can go home, Caleb has to have his first heart biopsy to check for rejection, which will be early tomorrow (Wednesday) morning.  He will be put to sleep while they sample tissue from his heart to see whether his body is accepting it. 

For now, we are enjoying living with our boy outside the hospital.  Caleb is in isolation, which means he can’t really go anywhere besides our apartment, other than outside.  He can go for walks, which we are doing a lot with this beautiful weather.  Yesterday we took a walk and I’ve hardly ever seen Caleb so happy and full of life, walking down a sidewalk, stopping and looking for pine cones and bugs and marveling every time he saw a squirrel or bird.  I thought I would burst with emotion.  Jonah came for a visit today and the four of us went through the Steak n Shake drive through and got lunch and milkshakes.  We brought it back to the apartment and I’ve never had so much fun eating a meal in my life; all 4 of us sat at a table together for the first time in a year.  The boys could barely sit still they were so happy, simply eating cheeseburgers together.  I sat there thinking, I wish every parent could feel this much satisfaction and happiness from sharing small moments with their family.  Daniel and I just keep looking at each other and saying, “I can’t believe how good this is.”

Jonah still can’t stay with us full time, but he is having plenty of visits and very soon we’ll all be together for good.  Wow, I can’t get over that!  Tomorrow will be a big day and we ask for your prayers over the tests Caleb will have.  PRAYING FOR NO REJECTION!!  We also need prayers for the timing of Lucy being born… we are praying that God would take care of us in regards to the timing of her arrival because she could literally be born the same time we’re leaving.  Our life is full!  These are good problems to have and we CAN’T WAIT to be home as a family of five!  I can’t even imagine the amazing days that are ahead of us.

Thursday, October 3, 2013

A new reality

I have been wanting to blog but I don’t have the time… literally.  These last few days since Caleb got out of ICU have been the busiest and most hectic days we have ever had in the hospital.  And that is saying something!  We kind of floated along in a fog of excitement and joy for a few days and now it’s down to business.  So many people have thought that since Caleb now has a new heart, this is all “over”.  That couldn’t be further from the truth!  While Caleb now has a strong, healthy heart, we are entering a whole new world post-transplant as we learn what all it takes to actually keep his new heart safe. 

Because Caleb’s new heart is foreign tissue, his immune system is designed to attack that heart.  This is called rejection and it is our new nemesis.  To prevent rejection, Caleb has to be on some powerful immunosuppression drugs to prevent his immune system from recognizing his heart as something to be attacked.  You may think that after the first few days, or weeks, the body will just accept his heart and forget about it.  Nope… Caleb will now be on medicine, life-sustaining medicine, every day for the rest of his life.  And not only that, but because his immune system will not be able to function like mine or yours, he will have certain restrictions to minimize his exposure to things that would cause infection.  For the next three months, Caleb will be in isolation, mostly confined to our house.  If all goes well, he will gradually be able to do more things, as long as he continues to have no rejection.  We keep telling ourselves, at least we get to be home, and be together.

In the meantime, caring for him day to day is intense.  Caleb is currently on 11 different medications for a total of TWENTY DOSES every single day.  We also have to check his blood pressure and temperature and heart rate twice a day.  He has to go to Riley every week for echos and blood work, not to mention routine heart biopsies and catheterizations.  We have so much to learn right now, which is part of why life is hectic.  We have class every day to learn all Caleb’s different meds: this med has to be taken with food, this med can’t be taken with food, this med needs to be taken at least 2 hours after this med, and so on.  Then there’s all the side effects and drug interactions.  Right now it feels like we are just giving him medicine all day long!  Eventually, over the next couple of years, the meds will be consolidated and a couple hopefully can be eliminated.  The hope is that by the time he goes to kindergarten, he is only taking meds at 7:00 a.m. and 7:00 p.m.  But that’s a long way from now. 

Caleb is doing really well medically!  We are so thrilled to see him be able to walk around and not get short of breath.  He is eating like a champ!  He pretty much eats all day long!  He needs to drink more, though.  His fluid intake is the only reason we’re still in the hospital… he isn’t drinking much.  Praying for thirst!!  Today in physical therapy he was able to go longer than he has so far and I was really proud of him.  Just to think, soon he’ll be running!

Besides how overwhelming all of his care is, the hardest thing right now is managing Caleb’s mood and emotions.  He is extremely volatile.  This is for a couple reasons; one, he has so many steroids pumping through his body (as part of his immune suppression) and he literally has “roid rage”.  He cries and falls apart every few minutes, over seemingly nothing.  It’s hard to help him get control of himself, which he really isn’t able to do.  He seems miserable at times, poor thing.  Secondly, his world has been totally disrupted in the last week and he has so much to adjust to and recover from.  He doesn’t understand everything that’s happening to him and he is constantly fearful of “owies”.  So we are all day long trying to learn how to care for him while at the same time trying to help him simply cope with his day.  It’s exhausting.  I have been told, many times, to be prepared for how intense post-transplant life is in the beginning, but I don’t think anything could have prepared me for this!  I just keep telling myself that someday life will settle down, he will adjust, we will get comfortable with our new life and this will all be wonderfully worth it.  God, give us the endurance and patience to do what we have to do, because this is the biggest responsibility I have ever had.  And I’m getting ready to have a new baby too…

I’m certainly not writing this to burst your bubble.  We are SOOOO thankful for the gift God has given us and Caleb and so excited that he has another chance at life!  What a miracle!  I just needed to communicate what this life looks like right now so you can keep praying.  A friend innocently hugged me and told me how good it felt to cross Caleb off her prayer list and I had to restrain myself from grabbing her and shaking her and desperately begging her NOT to stop.  We need prayer now as much as ever!  God will carry us through these new trials, we know He will, and we accept the path He has for our family.  We need to continue to walk this path with confidence in Him and a bold expectation that He will answer our prayers.

We miss Jonah and he misses us.  Fortunately it is only a few short days until Caleb is discharged to the Ronald McDonald House where he will stay with us, in our apartment, for the next few weeks.  And Jonah can be with us then, woo hoo!  We have some new toys just waiting for them.  If all goes well, Caleb will be discharged Saturday!!!  J  First though we have to prove our competence with a 24-hour “demonstration of care”, starting tomorrow at 3:00 p.m. where Daniel and I have to care for Caleb totally on our own while the nurses observe us and make sure we are ready.  Then, as long as he’s drinking enough fluids, he’s all ours.  What a wonderful and (slightly terrifying) thought!