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!

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.

24 hours after surgery

After a cranky start this morning, Caleb ate a nice big bottle and fell fast asleep.  He has been breathing on his own, off the ventilator, since last night at 6 pm!  He started eating last night too, which was really fast.  What a champ.  He slept well last night, but woke up this morning very fussy.  Clearly he is uncomfortable and in some pain... and who wouldn't be, one day after having your sternum broken in half?  It has gotten better as the morning has gone on, and now that he is eating and on regular pain medication, he seems to be much more relaxed.  I hate seeing him just lying there, fussing and even crying at times, but I know we are on the road to recovery.  The doc and nurse have started to detach various tubes and wires already, which is wonderful.  That means he's closer to being able to be held!  Probably one more day, maybe even tonight I can hold him!!  


The biggest things today are 1) hoping and praying that fluid does not begin to accumulate around his lungs and 2) hoping his sats (oxygen levels) continue to rise.  Please keep praying!  Caleb is our little fighter and he is making some great progress but we're not home free just yet.

Here at the hospital...

It is challenging to relax at all, knowing that Caleb is still in the "riskiest" part of his hospital stay, but at least he has come out of open-heart surgery.  The 3 1/2 hour surgery went well, was exactly as planned.  The doctors say that the riskiest period is from the beginning of surgery through 12 hours post-op.  Caleb is 2 hours in and doing ok so far.  It was easier to face the surgery today after seeing how well Caleb handled the heart cath yesterday.  Here are a couple pictures from LAST night after he recovered from the cath.

Right now we are sitting in Caleb's room, in the intensive care unit, waiting on him to wake up.  He came out of surgery at 11:30 a.m., so he is not out of the woods until it's been a full 12 hours with no problems.  Also, he is still on a breathing tube and not breathing on his own yet.  The doctor hopes to take out the tube and see Caleb breathing on his own sometime tonight, but it might be tomorrow.  He has struggled with breathing on his own in the past, so they will take it slow.  Here is how Caleb looks right now:

I want to just pick him up and snuggle him, but I won't be able to hold him for a couple more days.  I forgot how intense it is to see him all hooked up and with his huge bandage.  It takes some getting used to.


We just met with a doctor, who said Caleb is doing "great" so far.  In fact, he said, "He's just been a star".  But it's really difficult to take any comfort in that... it seems Caleb always has done well with the procedure itself, and then surprises us just when we think he's out of the woods.  So I'm tentatively pleased with how he's doing so far.


Please pray for:


1) Caleb to begin breathing on his own so he can get off the ventilator.  This is the first big hurdle.
2) For him to be comfortable and for us to be as relaxed as possible.  It is so hard to watch him be uncomfortable and frustrated and not be able to do anything for him.
3) Pray for no fluid to build up on his lungs.  This is the most common problem after heart surgery and would keep us in the hospital much longer.


We'll update again soon.  Right now we're going to try to rest until Caleb wakes up.  I don't know who is more exhausted, us or him!

New date for surgery

Just a quick update... Caleb's surgery is scheduled for Tuesday August 30.  It had to be pushed back a few more days due to a scheduling issue with the surgeon.  We will be arriving at the hospital the day before, Monday August 29, for Caleb's heart catheterization.  Afterwards he will be admitted to his room at Peyton Manning Children's Hospital at St. Vincents, with surgery scheduled in the morning.  


We had a check-up this week and Caleb's oxygen sats were actually up!  Yay!  Good to know he's strong leading up to surgery.


We will probably be in the hospital between 1 and 2 weeks.  Daniel will probably spend a lot of time going back and forth between the hospital and being home with Jonah.  Right now, we're feeling pretty good.  My mind has been at ease and I'm not feeling afraid.  I trust the doctors, who believe that Caleb is going to do very well.  


Please pray for:
- Caleb's heart cath and surgery to be as smooth as possible.  Pray that no fluid accumulates on his lungs and that he can quickly go off the ventilator and breathe on his own.
- Jonah, as he is away from us a lot.  Pray for him to feel secure and comfortable while we're apart.
- Daniel and me, for our marriage to be strong and for us to be patient and gracious with each other even in times of stress.  Pray for us to not be anxious or worried, but to be full of hope and joy.


We will be in touch!

Bright eyes and sweet smiles

We found out we will be going back to the hospital for Caleb's next surgery on August 23rd.  But how can we be anything but joyful when these boys are in our life?  We are so blessed...

Waiting a little longer

Yesterday's appointment was very positive.  First we went to the neurologist and found out that Caleb's brain is perfectly fine... I can't tell you how relieved and thankful we were.  There are risks with babies with heart defects because they have less oxygen going to their brains, and sometimes can having underdeveloped brains, but Caleb fortunately is not having this problem.  In fact, the neurologist was overwhelmingly positive and pleased with how NORMAL his development is.  Thank God!  

Then we had our cardiology appointment.  The doctor said his oxygen levels are the lowest they've been since we left the hospital after his birth.  In fact, it's about as low as they want to see it go.  After examining him, Dr. Kumar said it's definitely time for his next surgery.  He is not in immediate danger, which caused me to relax a little, but the doctor said Caleb is coming to the point where the first surgery he had when he was born is becoming less effective and they need to go on to the next step of "fixing" his heart.  Originally the plan was to go back next week and have a heart cath and then surgery a week after that.  But he said he believes that will be too hard on Caleb at this point, so we are just going to go in for the heart cath, admit him to the hospital and have his surgery the very next day.  I wish he could have some time to recover in between, but the good thing is that we only have to come back one time, and get all the procedures done at once.  Now we have another 2 or 3 weeks, whereas I went to the appointment kind of feeling like our summer is over.  So that's good, no back and forth, just make one more trip and do everything at once.

We still don't have a date, but we will know in the next few days when we're going back for surgery.  Thanks for your prayers, we are hopeful and ready to get Caleb stronger and stronger!