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!  

Three months old

I have been asked many times lately for an update on how Caleb is doing, and we just went to St. Vincent's to see the cardiologist for a checkup this week, so it's a good time to share how baby boy is doing.  We hadn't been back to St. V's in 6 weeks and this was a very short visit.  Dr. Kumar, Caleb's cardiologist, is pleased with how he's doing.  Before the doctor came in, I was nursing Caleb under a cover-up and when I pulled him out, Dr. Kumar had a genuine look of surprise on his face when he smiled and said, "Oh, he looks really good!"  Caleb now weighs right at 11 lbs. and is a pretty normal baby.  (Well, with the exception of the giant scar that takes up most of his chest.)  The doctor said his color looked really good, and his oxygen levels were good.  We didn't even have to do an echocardiogram!  We were only there for a total of about 20 minutes, which is great in my book.  Dr. Kumar said that Caleb's next surgery will probably be around the beginning of August.  This surgery will be a more extensive procedure than his first one.  The short story is that they have to go in and re-wire some of his major blood vessels, connecting his superior vena cava directly to his pulmonary artery, effectively bypassing the part of his heart that is defective.  It's hard to know exactly how long his hospital stay will be next time around, but a decent estimate is 1-2 weeks.  Of course, we've learned to hold on to that expectation very loosely.  Caleb will have one more surgery after that, when he's about 2 years old.  At that point, his heart will be as fixed as it can get and he will be a relatively normal child.  He will always have to go to the cardiologist, for the rest of his life, but his heart will be fairly strong and able to do most of the work that a normal heart can do.  He won't ever run track, but maybe he can be a good golfer. 

The night before we took Caleb to the doctor, I was putting Jonah to bed and I told him that in the morning he would be hanging out with Grandma Amy because Mommy and Daddy were taking Caleb to the doctor.  He asked if he was getting a shot and I said no.  Then I asked him if he remembered when Caleb was in the hospital and Jonah got very serious.  He said, "Caleb go back to the hospital Mommy?" and I said no, no, this was just a check-up and we'd be right home.  Jonah immediately relaxed and we went about our bedtime routine.  But while I was reading to him, I thought about how much I am not looking forward to that day in August when we DO have to go back; when we have to step back into that world where Caleb is a patient and his little heart, and life, are completely in the hands of doctors.  The normal stress of having an infant and a 2-year old has allowed me to forget about what's ahead for a little while, but that night I got a little glimpse into how it will be when I have to tell Jonah that in the morning we're going to the hospital, and that we won't be back for a while.  God give us the grace when we need it...

For now, you'd never know our family is any different than any other family with a new baby at home.  Parenting is demanding enough without having to worry about the future.  We're taking it a day at a time and thanking God that we've already had 3 whole months to enjoy this amazing little boy.  3 months old!  Before I know it, Caleb will be the 2-year old and Jonah will be 4 and they'll be best friends (or partners in crime) and running all over the place.  And Daniel and I will ask each other, "Remember how hard those early days were?"  God has already walked with us through so much and I know He is going to walk us through much more. I wish sometimes that this was all over and Caleb was 100% well, but at least I know that we aren't alone on this road.  

pictures

I can't decide if he looks like any of us... but he sure is cute.  And getting more chubby by the day.

Sweet little smiles.

Jonah can hardly stand to be left out of the action.  He was just getting out of the tub and had to run and give me a hug, apparently even before getting dressed.

Look at those cheeks.  They beg to be kissed.

sweet boys

I will be absolutely shocked if Jonah doesn't pursue music as he gets older; the boy is constantly singing and playing instruments.  I would've given anything to have been videotaping him the other day.  I was in the dining room cleaning up and Jonah had gotten out his guitar and was playing on the couch.  I heard him singing the song "All in All", only these were his modified lyrics:


Jesus, Lamb of God,
Wormy is your name.


It's supposed to be "worthy", but I'm sure Jesus was still happy.  This was the very same jam session that Jonah began by saying into his "microphone" (which is an old car charger cord for a phone), completely to himself while I was in another room, "OK, let's pray.  Jesus, help me play music. Aaaaaaa-men."  To my knowledge, this is Jonah's first self-motivated prayer and I will never forget it.  Like I said, I think this kid will be playing music for a long time.  I can just see him saying that very same prayer 20 years from now, only with a real microphone, and standing in front of his church family.  We'll see.  It's fun to dream about what God will do with my boys.  Of course, if I'm only judging this based on what comes out of my son's mouth nowadays, there are still many other possibilities.  I mean, this is the same boy who draped a throw blanket around his shoulders a couple days ago and paraded into the kitchen while I was cooking supper and said, "Look Mommy!  I'm a queen and this is my dress!"  His daddy was really happy about that one.  God, I know I say that I want you to use my boys however would best honor you, but if I get a vote, I choose worship leader over queen.  Amen.


Oh, my boys.  I love typing that little phrase.  My boys.  It is so sweet to be a mom to two little boys.  I have nothing to compare it to, since I don't have a daughter, but I think boys are something special to a mommy.  They just melt my heart.  Today I was changing Caleb's diaper and he gave me the biggest grin (like he knew I needed some cheering on) and I just could've burst.  You know you're in love when you can burst with happiness while cleaning up poop.  I used to ask my mom how you ever can love another child as much as you love your first, and now that question seems so stupid.  Somehow, some way, I love this little sweetie just like I love my big sweetie.


Speaking of sweeties, my Main Sweetie's birthday was yesterday.  (That would be my husband, in case you're having a hard time keeping track of all the sweeties.)  To celebrate, we went to see Bill Cosby in Muncie last Saturday for our first date night since Caleb's birth.  It was so great, spending time together as a couple.  I have really missed Daniel in a way.  Obviously we're together all the time, but the demands of a new baby on top of a 2-year old have left us with scarce quality time.  Saturday we sat and talked at dinner for a long time and I was reminded just how fortunate I am to be married to him.  I really hit the husband lottery.  After 2 kids and almost 7 years of marriage, I can sincerely say that we are closer than ever and that I am still crazy about this man.  Ironically, that night listening to Bill Cosby, he made a lot of jokes about marriage, and while I laughed at them, I have thought about some of the cliches he used.  He joked about how once kids come along, the husband is kinda pushed to the side and forgotten.  You know, that really has never been us.  Daniel is, and always will be, my greatest (earthly) love.  My children are more dear to me than I can describe, but Daniel has first place in my heart.  He is my best friend and my perfect partner.  He is the kind of man that I hope my sons become.  I trust him and respect him more than anyone I know.  A long time ago, I told one of the teens in my youth group that marrying Daniel was the best decision I ever made, and I believe that more and more the longer we are married.  So happy birthday to you, sweet husband.  Thank you for being in my life and for making my life so good.  Wow, my blessings are stacked high.  Makes it really hard to complain about how little sleep I'm getting when I think about how good I really have it.