Runny noses and Christmas hysteria

I always thought I loved Christmas, and every year I get super excited when it finally gets here... but my own excitement, I have learned, is NOTHING in comparison to the near-hysteria that Jonah is experiencing as the holidays get closer and closer.  I have never seen the child like this about anything.  The day we put up a simple strand of outdoor lights on our porch, he broke into cheers and applause and literally jumped up and down for several minutes.  And each day is more and more of a frenzy!  I can't imagine what it will be like when he actually wakes up and sees presents under the tree.  Regardless of where you live, if you hear a faint yet distinct fit of joyful screams on Christmas morning, it might be coming from my living room. 


It would wear me out if I wasn't enjoying Jonah's anticipation so much.  My favorite thing he does right now is provide a running Christmas commentary to Caleb throughout the day.  "Look, Cay-wub, look at the lights on that house!"  "Cay-wub, you're probably going to get a tractor for Christmas and I'm probably going to get a combine."  "My stocking is going to be BIG but your stocking is going to be wittle, because you're wittle, Cay-wub."  And so on.  Caleb seems to sense something exciting is going on because he watches his brother with an interest I've never seen before.  Between the two of them, there is no lack of enthusiasm around here.


But even amidst all the fun and excitement, Caleb continues to keep us on our toes.  We never can truly just relax and enjoy life because we're too often reminded of Caleb's special little heart and the impact that little heart has on our daily life.  This week I have already been to the doctor three times and it's only Wednesday.  Caleb has had a very bad cold virus that just won't leave, and he has to be monitored when's sick because the doctors have to look out for breathing struggles, oxygen changes, all that jazz.  We went to the doctor Monday and the doc thought he might have the flu and he might have to stay over night at St. Vincent's.  Yuck.  We went back the next day and she said he looked better and could stay home but we had to keep our eyes open for unusual breathing or anything else out of the ordinary.  A few hours later we had our first genuine scare at home.  When Caleb woke up from his nap his lips were purple and his hands, legs, and feet were ice cold.  And I couldn't warm him up.  I called Daniel, he came home, we called our pediatrician and she said to bring him back... I thought for sure we were heading to the ER at St Vincent's.  But after a couple hours, he started to get pink again and started to finally warm back up.  Our cardiologist and pediatrician agreed he could go home again and it was probably just a reaction to the fever he's had with this virus.  When kids have a fever, their extremities can be a little cold, which for him can mean REALLY cold.  It wasn't until I walked back in our door at home, after spending so much time at the doctor and in near-crisis mode, that I realized how scared I'd been.  Daniel was too.  Even a few hours later when we crashed in bed, we just had to cry off the emotions from the day.  This morning he seems better, still chilly but I can warm him up with lots and lots of layers and a cranked-up furnace.  I think this virus might finally be (please, Lord) going away.


So we are plugging along, trying to make ourselves relax.  Daniel and I had a long talk last night and realized just how distracting it is to have a child with medical issues.  It's really hard to focus on other things, which is especially hard for Daniel with his job.  It's hard for me to focus on the ministry and discipleship that I want to pour energy into, and yet so often I don't even have any energy to put anywhere else because my family gets all of it.  It's hard, but we're trying to learn how to have a life AND a heart baby.


All of this is not putting a damper on our Christmas.  We are all having a blast with this season and continue to just enjoy simple things together.  Thanks for your ongoing prayers and encouragement, and especially for your understanding.  We hope the people we love can understand how our minds are pretty consumed with family stuff... and pray for us to continue to find our strength and security in Jesus!

An update... and some cute pictures while we're at it

Happy November, friends.  It seems like a good time to share a Caleb update with y'all.  We had a cardiology check-up yesterday back at good old St. Vincent's and it went pretty well.  (Insert sigh of relief.)  Caleb has finally put some weight back on and is at a healthy, normal weight for his age.  If you've seen his fat little face lately, you are probably not surprised to hear this.  The kid has several chins!  Overall, Caleb is doing well.  If you've followed along with his progress, you may remember that we found out a month ago that his overall heart function has weakened since surgery, and this is not a good thing.  Yesterday we found out his heart has gotten stronger, but is still not within the range of normal heart function.  It's just not pumping as hard as it should.  However, Dr. Kumar is still hopeful that Caleb will get there with more time.  He reminded me that doctors look at a patient's overall health more than one isolated factor, and if you look at Caleb, you see a 9-month-old little boy who is growing, eating, breathing normally, has good oxygen levels... basically, he's doing great for his condition.  And that's encouraging.  


Life goes on, doesn't it?  My boys are growing and changing and it seems pointless to waste time worrying about what the future might hold, when the present is flying by.  Jonah just turned 3 and had a John Deere-themed birthday party that was, I believe, the highlight of his life.  He is obsessed with all things related to tractors.  He plays with this little John Deere toy phone that he insists on keeping in his pocket "in case a farmer calls".  Sometimes, apparently, farmers DO call, because I hear him talking on it and the conversation always ends with, "OK, bye bye Farmer, I wuv you."   


So my little guys are both doing well.  Sometimes I look at them and I can't believe how old they are and how fast this all goes.  I would love to hit pause and just stay in this stage where Jonah still wants me to tickle his back and Caleb smiles up at me with his gap-toothed grin about a hundred times a day...God love him, he's going to have a Cox smile.  These boys are the best and I love being their mama.
  

Camping and combines... and coping

It's pretty easy to forget about stress when the weather has been so beautiful... we have really been taking advantage of it.  Last week we turned our backyard and patio into a campsite for the weekend.  It was an absolute blast.

Then a few days later we spent some time with my dad, who is a farmer, in the fields.  His combine is literally bigger than our house.

These have been some great days... I love having these sweet experiences with my sweet family.  If you read my last post, you know that I've been struggling lately as I accept our new reality, the reality of having a child with a major medical condition.  I can share with you that God has been speaking to me a lot lately and I'm more convinced than ever that God gives some of His greatest gifts to us during times of deep pain and struggle.  We don't want to experience pain, we don't want the difficult times in our life; but those times are so important to our growth if we want to follow the way of Jesus.  I'm such a different person now and that's a good thing!  I'm trying to turn less and less to the things of this world to bring me peace and turn more to Jesus.  He is proving Himself to be everything He has promised to be to those who call on Him.

Caleb is doing pretty well, nothing new lately.  His next trip back to St. Vincent's is in 2 weeks and I'm praying his medicine is helping his heart to grow stronger.  He is growing so big so fast!  He is 8 months old now.  Wow.  

If you pray, please pray for Caleb.  Pray for his heart to get stronger and for his parents to grow stronger too.

      

The brick in my pocket

We have been home for over a week now.  It's amazing to me how quickly time goes by here, and how slowly time moved while we were in the hospital.  Recovery has been challenging at times.  I can't pick Caleb up under his arms, I can't lay him on his stomach, can't put him in his exersaucer.  He is waging a war against his medications.  Fighting a 7-month old to take his medicine is becoming an aerobic exercise for me.  And he now has to take medicine 4 times a day, probably for the next year of his life.  I don't think he's in pain any more, but his chest is very sensitive to any amount of pressure.  I'm so ready for him to get back to his full range of motion!


On the plus side, last night we FINALLY had a breakthrough with sleep.  He only got up twice.  I will take that over being up all night long, any day.  And he's eating normally and gaining weight again.  He's gained about half a pound or so since we left the hospital.  If you came into our house, you would never know what he's gone through; unless he has his shirt off, in which case he looks like Frankenstein.  Otherwise, Caleb is smiley, happy, cooing and practicing his "Ma-ma's" and "Da-da's" all day long.


We went back to the hospital for a check-up on Monday.  His oxygen level is higher than ever, and overall everyone was very pleased with him.  Dr. Kumar kept saying how great he looked.  That is so good to hear!  The only downside came after they did an echocardiogram.  Apparently Caleb's overall heart function is pretty weak right now.  His little heart isn't pumping with the strength it should.  Hopefully, the doctor says, it's just a temporary reaction to his recent surgery.  He prescribed another medicine and said hopefully with time and drugs Caleb's heart will get stronger.


At first, this news didn't bother me.  Up until that moment, everything had been glowingly positive.  But on the drive home it began to eat at me.  Why couldn't we just leave it at "He looks great"?  The dark little cloud made its way back in just when I thought it was going to be gone for a while.  The reality is, that little cloud will never be gone.  I read somewhere that grief is like always carrying a brick in your pocket.  Some days you don't notice it at all, but it's always there.  Having a son with half a heart is that way.  Sometimes I can coast along on some good news, but sooner or later I realize the weight that's been there all along.


There is something I've been reading over and over lately.  It's in the Bible, from the book of Jeremiah and it says this: "Blessed are those who trust in the Lord and have made the Lord their hope and confidence.  They are like trees planted along a riverbank, with roots that reach deep into the water.  Such trees are not bothered by the heat or worried by long months of drought.  Their leaves stay green and they go right on producing delicious fruit."  I've thought about this picture of a tree next to a river so much lately.  That tree doesn't depend on the fickle weather, or the rain that may or may not come.  That tree doesn't need the rain, which is temporary, to keep growing and thriving because the river provides everything it needs.  In the same way, I can't depend on my circumstances to keep me going.  My confidence is not in a good doctor's report, or in my family's happiness, or in everything going ok in my life.  Those things are just temporary, like the rain.  My confidence is in my God, who is not temporary but permanent and enduring.  If I am the tree, he is the river, the one who gives me life and joy and peace.  I can't put my hope in anything, or anyone, else.  If I am deeply rooted in God, the droughts of this life won't ruin me because He will keep supplying me with what I need to grow.  Lord, remind me of this picture when I notice the brick in my pocket.  Remind me that you are everything I need and that you will give me roots that reach deep into you; roots that will keep me from being blown over by the pain that this world brings.  I pray that my friends and family will put their hope in you too.  God, I will not forget to thank you for what you've already done.  You have walked with me in the darkest and brightest moments in my life!  I love you now more than ever, Lord, and I will trust you no matter what.  

Requesting continued prayer

Good morning from 717 South 15th Street!  It is great to have all of our family home together, and what an added blessing that we still had Labor Day to rest and unwind before Daniel goes back to work tomorrow.  Isn't God good, the way He goes far beyond meeting our needs and gives us simple things like that?  And that's on top of sustaining Caleb's life this week and keeping all four of us going through such an intense experience.  I really have come to a place in my life where I can be thankful for pain and suffering.  There is always, without fail, something new and GOOD that God does in my heart and in my life when I go through painful times.  This week has been so intense, but God has been present with us.  He has never left us or forsaken us.  He has given us peace beyond understanding.  He works out all the things in our life for our own good.  I love Him more than ever because He is the ONLY thing worth living for.


We had a rough first night at home.  Caleb, understandably, just wants to be held all the time and actually wouldn't sleep unless we not only held him, but walked around the house with him in our arms.  Daniel and I took shifts from midnight to 7:00 a.m.  After being in a hospital bed for so long he just needs some extra attention.  Also, his appetite has not fully returned and he has lost a little weight.  We were told this would happen; it's completely normal for a little guy who just had surgery.  I just want to see him scarfing down some bottles and get his little gut back!  


All that is to say, we still need some prayer.  There is still quite a bit of recovery time ahead of us.  It will take 3 to 6 more weeks for Caleb to fully recover.  He can't lay on his stomach or put any pressure on his chest until that time, and picking him up causes him obvious discomfort.  And he requires much more attention and time being held, which is difficult with Jonah to take care of as well!  Please pray for:


1) Caleb's appetite to come back full force and for him to be a good eater.
2) Sleep!  Pray that Caleb would be able to fully rest and be comfortable in his bed again.
3) Caleb's chest to heal quickly so he can get back to rolling and scooting so he can stay on track developmentally.


Your prayers mean so much to us!

Homebound!

Just signed the discharge papers... we are going home!  Caleb is so ready to be out of this hospital bed.  We are overwhelmed with thankfulness that our little sweetie is going to be home 5 days after open-heart surgery.  What a week! 

Please pray that Caleb's appetite comes back quickly and that he can re-gain some weight.  Pray that his pain is minimal and recovery speedy.  Much love!

The little fighter

When the cardiologist, Dr. Steinberg, walked in this afternoon to check on Caleb he said, "There's the little fighter!"  He is so right!  This boy is determined to get well fast.  His x-rays showed no fluid at all on his lungs.  He is doing great, and coming home soon.  Right now he is sitting next to me sucking on his toes and cooing.  He has been a bit of a rebel the past couple days... he has pulled out his IV in his arm, pulled his oxygen tube off his head, pulled the probes off his feet... always with a smile on his face, as if to say, "Look guys, I don't even need these!"  The nurse just told me I could unhook him for a while and take him for a walk in a wagon around the floor.  I'm looking forward to getting him out of his room.  I'm sure he will flirt with every nurse he sees, as he has been known to do around here.

I can't believe he just had open-heart surgery a few days ago.  He acts completely like himself.  I can't wait to get him home and be on the road to a full recovery. 

Daniel and I will never be able to sufficiently thank everyone who has prayed for us.  Caleb's recovery is a miracle in our life and an obvious result of prayer.  THANK YOU.

The next update will probably be from home!  Unless anything changes, we will go home in the next day or two. There are lots of smiles in this hospital room today!