Tuesday, September 13, 2011

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.  

Monday, September 5, 2011

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!

Sunday, September 4, 2011


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!

Saturday, September 3, 2011

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!

Thursday, September 1, 2011

First roadblock

Caleb is obviously in less pain today, which is great to see, but the problem we were praying against has come up:  There is a small amount of fluid beginning to accumulate around one of his lungs.  Right now, they are going to try to get this fluid to drain off with medications in his IV.  There is a 50/50 chance of this working.  If it doesn't work, we are looking at Caleb having a tube surgically inserted into his lungs and a much longer hospital stay.  PLEASE PRAY!  We need to pray that this fluid all drains off and that his oxygen levels go up.  

Pray also that Daniel and I do not get discouraged or give in to anxiety.  Overall, Caleb is doing very well and gaining strength.  But it is still hard not to get nervous about the "what-ifs".  Pray for us to stay focused on the present and deal with things as they come.  We are so thankful that Caleb has progressed so quickly and we believe he will continue to do so.