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!

Here we go again

My old friends Anxiety and Dread have finally returned to our house... It's time to start preparing for our return to the hospital for sweet Caleb's next open-heart surgery.  We did an amazing job of putting this inevitable event out of our minds this summer, but after Caleb's 6-month check-up this week, I've realized I can't really put it out of my mind any more.  The surgery is coming quickly whether I want it to or not. 

Caleb is doing ok.  His weight gain has slowed quite a bit lately and he has dropped to the 3rd percentile for weight.  Our pediatrician reminds me that Jonah wasn't much bigger and he had no health problems, and I try to be comforted by that.  Caleb now gets up a couple times in the night to eat, probably to make up some extra calories.  Developmentally, he is doing pretty well.  He is weak in his trunk and is not able to sit on his own at all, but otherwise has done all the things a 6-month old should do.  

On Wednesday August 3 we will be going in for the first round of tests on his heart in anticipation of his surgery, which will be in the next couple weeks.  Caleb will not only see his cardiologist on Wednesday, but we also have to see a pediatric neurologist to run some tests on his brain.  The doctors want to make sure his brain is developing properly.  His head circumference is very small, not even on the growth chart.  Fortunately, he is developing normally so they believe is brain is growing and developing properly, but because it's Caleb, they want to make sure.  That makes Wednesday a big day.  Not the biggest day ahead, but still big.  

Last night I met with a couple friends and I confessed to them that I have mostly avoided talking about Caleb's health lately.  To the point that many people don't even realize what all is about to happen.  I need to communicate better so that people can support and encourage us... because we really need it.  That dark cloud of Anxiety and Dread that went away has come back again, and it's always there, hanging over our days.  We keep it at bay, but it's still present.  We are focused now on what's ahead and we have to ask our friends and family, once again, to pray for us and come around us.  We are heading back into the unknown, into a place where it's painfully apparent that we have no control over what happens to our son.  

I will be updating the blog frequently, beginning with our tests and appointments next week.  We are not despairing!  We are trusting God with every part of our life, the joyfully bright parts and the painfully dark parts.  Thanks for your prayers for our family.   

How Caleb's doing...

We made another trip to St. Vincent's this week for a check-up with Caleb's cardiologist and I realized it's been a while since we gave an update on our baby boy's condition.  Caleb is really doing great.  At four months old, he seems like any other baby and you would never know he was born with a major heart defect, unless you see him really scream; he turns pretty blue!  He is rolling over, reaching for things to put in his mouth, and is incredibly happy and social, with smiles for anyone that looks his way.  He is SO normal and healthy-looking, in fact, that I have almost completely put out of my mind the facts of his medical condition.  It has been very easy for me to not think about what's ahead, but this week when we returned to St. Vincent's, I realized I won't have that luxury much longer.  In August, things will get very interesting.  First, Caleb will have a heart catheterization, where the doctors will go into his heart and get a good look before they do his next surgery.  Dr. Kumar, Caleb's cardiologist, said that sometimes babies do not respond well to a heart cath... to which I was thinking, no duh.  When Caleb had his first heart cath, at 4 days old, he almost died that night.  That was the night we came back to the NICU from dinner, only to turn the corner and see our baby ashen and struggling to breathe.  Dr. Kumar said he could have another similar episode, and if he does, they will simply admit him and do the surgery the next morning.  Even if the procedure goes fine, Caleb will at least have to stay overnight.  Then he will go back a week later for the surgery.  So we will be at Peyton Manning Children's Hospital at St. Vincent's a lot in the month of August.  This next surgery is a significant one, a more complicated procedure than his first surgery.  However, recovery time is usually only about a week, if everything goes well.  Then we could go back home.  


This hospital stay is going to be so different... now Caleb is old enough to know his mommy and daddy, and we are probably going to have a hard time leaving his side at all.  I need to really start spending more time praying for Caleb, and I'm asking for our family and friends to do the same.  Dr. Kumar said we didn't need to come back for a check-up until August 3, at which time they will schedule his heart cath about a week later.  That gives us June and July to enjoy time as a family as much as possible, and to pray for our little guy to grow strong.  Can I ask you to pray for a couple specific things? 


1.  Please pray for our family to really have some good bonding time this summer and for us to grow close as we prepare for the next "valley".  We want to give our boys as much attention as possible and really have fun and make some good memories this summer. 


2.  Please pray for Caleb's ongoing development.  Pray that he does not have any delays but continues to hit important milestones on time.


3.  Please pray for this next heart cath, and subsequent open-heart surgery, to be huge successes.  Pray that Caleb's body can handle these procedures with no complications.  Pray that he will recover quickly and with strength.


4.  Please pray for God to guard my mind and Daniel's mind against worry and fear.  Pray that we would be rock-solid in our faith and steadfast in our commitment to trust God in all circumstances.  We want our family to be a light that points others to Jesus.


We have SO much to be thankful for!  We have two amazing boys and a great marriage.  We have so many wonderful family and friends who have supported us and cared for us through such an interesting time in our life.  Most of all we have a Savior who has never left us or forsaken us.  He makes this life worth living!
  

Two cuties at the circus

We took the boys to the circus today... 

Meanwhile... in a nearby car seat...

What a happy baby.  He is so content and sweet.  In these pictures we were sitting outside and it was a million degrees, but he was still all smiles for Mommy.  Is he a miracle or what?

Brothers

I came into the living room the other day and saw Caleb lying happily on the floor with stickers all over his face.  I took them off, but not much later in the afternoon I came around the corner to find the following scene:

Jonah has just now come into a stage of being jealous of the time and attention I give to the baby, and this is a stage that is pushing me to my limits more than any other time in Jonah's little life.  At times I feel really sorry for him and the changes he's experiencing, and at other times I have to literally go into another room and cry off some stress before I can go back and deal with his attitude.  Today Jonah threw a small can of play-doh at Caleb and it hit him hard.  Just to get attention.  Caleb cried that pitiful cry like when he gets shots and he wouldn't stop for 20 minutes.  It was the longest he's ever cried, ever.  I think Jonah immediately felt sorry, but still screamed his way through his entire time-out.  I didn't know which to do first, console Caleb or punish Jonah.  Caleb was obviously in distress, so I picked him up first and tried, unsuccessfully, to discipline Jonah WHILE comforting Caleb.  That didn't work.  It was a stressful situation to say the least.  This is such an intense time in our house.  Jonah is like a ticking time bomb and I never know when he's going to go off.


Then there are these really sweet moments, like when I walked in on Jonah putting stickers on Caleb's chest.  What was so sweet was the way Jonah was doing it; he was speaking to Caleb in a very gentle, quiet voice, saying, "You want some stickers, Cay-wub?"  He was genuinely trying to share with his brother, and I could've squeezed him it was so precious.  Or today, when Jonah asked if I would put Caleb down in Jonah's bed so he could sit next to him...

  
These are the moments that get me through those times when I'm convinced that I'm raising a couple of wild animals instead of two human children.  These are also the moments that remind me why I choose to stay at home instead of have a career right now.  This is so hard!  But this is SO good!