Wednesday, December 7, 2011

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!







Thursday, November 3, 2011

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.
  










Sunday, October 16, 2011

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.

      



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

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!

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.

Wednesday, August 31, 2011

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.

Tuesday, August 30, 2011

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!

Thursday, August 18, 2011

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!

Thursday, August 4, 2011

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!

Thursday, July 28, 2011

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.   

Sunday, June 5, 2011

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!
  

Wednesday, May 11, 2011

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?

Tuesday, May 3, 2011

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!  

Monday, April 25, 2011

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.  

Tuesday, April 5, 2011

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.






Thursday, March 31, 2011

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.


    













Saturday, March 19, 2011

Is it April yet?



It's a very terrible habit wishing time away and as a rule I try not to do it, no matter what it is I'm looking forward to or wanting to get over with.  And every year, about this time, I'm almost crazy wishing spring would come.  But this year more than ever I wish the weather would hurry up and get warm so that baby boy and I can leave this house!  The doctor says once it's April and flu season is over, it will be safe to bring Caleb out and about; because for him to get sick would be way worse than another kid with no heart condition getting sick.  Caleb couldn't care less to be home all day, but his mama and big brother are counting down the days.  Makes me wonder if Caleb is going to be a homebody like his daddy or a people-person like his mommy.  Or a crazy firecracker-ball-of-energy like his brother.  Poor Jonah, he wants to get out of here and do something, ANYTHING.  The kid is getting cabin fever so bad he even wants to go with me to Caleb's doctor's appointments, and that is bad considering that Jonah loathes the doctor's office and likens his own visits to child abuse.  I guess compared to staying in the house another day, he's willing to take his chances that he won't be the one getting ow-ies.  


You know, I just realized that I started writing this post with no real idea of what I intended to write about.  I'm sitting here thinking, what is there to say?  What a nice change.  No desperate prayer requests.  No upcoming open-heart surgeries.  No traumatic experiences lately, with the exception of the enema I had to give Jonah the other day.  Yikes.  That was only Day Four of me being home alone with both kids, and I had to call Daniel at work and tell him to Come. Home. Now.  Jonah had been constipated for a few days and I was attempting to give him an enema by myself... stupid.  He was hysterical, naked on the floor on a towel and Caleb was in his bed crying, and I was crying and we were all a mess.  Then we became a messier mess when Jonah wriggled out of my arms in the middle of his enema and proceeded to poop all over himself, the floor, his mother... oh, the horror.  You can imagine the scene when Daniel walked in the door.  God love that man, he is the most patient, level-headed person I know.  He is the perfect partner for me, who had completely lost it by then.  Jonah and I were just holding each other, both covered in poop, crying and sweating from the overall stress of the situation.  That was the day I realized the answer to the question I'd been asking myself all week, "How on earth do people take care of more than one kid at a time?"  And the answer is, somebody just has to wait.  There might be consequences, such as poop on the floor, or a baby crying so long his little lips looked blue (sorry, Caleb), but there's no getting around the fact that I can't always do two things at once.  And now that I realize that this is inevitable, I have relaxed a bit and cut myself some slack.  Oh the joys of parenting!  I do think I'm getting better at this.  Each week I've felt a little more confident in my ability to take care of these little boys that God has entrusted to my care.  God, help me to be a giving, kind and patient mother who finds her confidence and security in You.  And help me to remember how quickly time goes by and not to wish it away, even the hard moments where I feel cooped up, or sleep-deprived, or like I might go insane when Jonah wants to watch his Bob the Builder dvd three times in a row.  Amen.


As for Caleb, he is doing great.  Thriving!  He is gaining weight really quickly and is smiling and cooing and I want to kiss his fat little cheeks right off his face.  At the doctor's office yesterday he weighed 9 lbs. 3 oz.  This is a victory!  Praise God for his little life.  Soon he'll make his world debut and we can stop being hermits and come out of the house.  Until then, pray for us to keep our sanity just a little longer.





Wednesday, March 2, 2011

After Caleb's first trip back to St. Vincent's

We made the trip back today, for the first time since leaving.  It was so bizarre... it actually felt like going home.  Yuck, I don't like that going to a hospital feels so very familiar.  But thankfully today was a good day, a very smooth day filled with good news.  Dr. Kumar, Caleb's cardiologist, says he looks great.  He did an EKG on Caleb, checked how his circulation of blood in his heart is doing, checked his oxygen levels, and everything looked surprisingly good.  And he is still gaining weight like a champ!  Caleb now weighs in at 7 lbs. 9 oz. which means he's gained an entire pound and a half since leaving the hospital.  Wow!  The doctor was so pleased with him that he didn't schedule our next appointment until 6 weeks from now.  Maybe by then home will actually feel like home.

I wish I had more time to write, but for now I'll just have to leave it at that, a short update.  I will sign off by saying that I appreciate the people that are praying for us more than I will ever be able to say adequately.  It is an amazing gift that you are giving us, and our family really believes that prayer is the reason Caleb is alive and well.  So a million thank yous.

Tuesday, February 22, 2011

Home sweet home

I have never been so happy to be in my little cracker-jack-box-of-a-house in my life.  We have been home for 5 days now and I still think it's amazing to see Caleb with no tubes or IVs or other various appendages attached to him.  He's here!  He's ok!  He's gaining weight!  I'm telling myself these things over and over.  When we left the hospital, I kept feeling like someone was going to run after us and say no, wait, we can't really take him home.  Finally I have relaxed now.  That's something I get asked a lot, is whether or not I can really relax or if I'm worried to death that something will go wrong.  Honestly I am not afraid or even anxious.  I can't start down that path, you know?  My son is a heart baby, he always will be, and I am not going to let fear and anxiety take a foothold in my mind or I'll just go crazy.  Worry myself sick over something I have no control over?  No thank you.


I'd like to pretend like I'm really mature and wise and THAT'S why I'm not worried, but in reality the intensity of my new role as a mom of two is a pretty good distraction.  Holy cow, how do people do this?  I mean, I guess you just do it because you have to, but wow, two kids is a lot of work.  I hoped I would be so thankful to have Caleb home that I wouldn't even mind getting up round the clock and trying to manage a newborn while also wrangling a two-year old.  But I will make a confession, as I'm prone to doing on this blog, that I am apparently still a very selfish person.  Isn't parenting just one continual revelation of your own selfishness?  I thought I outgrew a lot of that with my first child, but apparently I still have some growing to do!  


I really am beside myself with gratitude.  Caleb is doing great, and we are having a blast getting to be an actual family of four.  Jonah is way sweeter to his little brother than I expected.  He is eating up the big brother thing!  Besides the occasional meltdown (that could just as easily be one of those inexplicable 2-year old things), Jonah seems like his normal self.  He freaked out for the first few days at home and didn't want to go anywhere.  When I asked him this weekend if he wanted to see his grandma and grandpa, he said, "No Mommy, I just want to stay with my parents."  I guess some time in the last 3 weeks he learned the word "parents".  But he's over it now, and back to his extroverted self.  Last night he picked up Caleb's diaper bag and brought it to me and said, "Let's go Mommy.  Let's get in your car."  I love that kid.  He is his mother's son.  Four days in a row at home were enough for him, thank you very much.


Caleb had his first appointment with the pediatrician yesterday and he has gained.... drum roll, please.... 12 ounces in 5 days!  This is amazing weight gain!  What a little pig.  The fact that he is breastfeeding and gaining weight is a miracle.  He looks great, and will continue to visit the cardiologist and pediatrician frequently.  For now, life is very normal in the Kinnaird house.  Happily, hectically normal.  

Tuesday, February 15, 2011

progress

We are on the road to recovery!  I can't believe Caleb is not quite 3 weeks old... it feels like we've been here in the hospital for months.  I definitely do not feel like a mother of two, because I am only ever with one of my kids at a time.  I can't WAIT for the day when my whole family gets to be in the same place at the same time, and I don't have to miss anyone.  At any given moment, I am missing at least one of my boys... that is getting so old.  But it's easy to focus on good things, such as the fact that Caleb has had so many boring days in a row.  Trust me, boring is very good around here.

Here's the latest: Caleb is tiny.  I mean, TINY.  He weighed 6 lbs. 11 oz. when he was born.  He currently only weighs 5 lbs. 14 oz.  He lost a lot of weight during the time of his surgery and recovery, because he didn't eat for almost a week.  Now that he's finally eating, they expect him to start making up for lost time and gaining weight soon.  One thing about heart babies is they usually have no energy to eat for weeks after surgery.  When we were transferred back to the NICU, the docs and nurses all told us to expect him not to eat on his own for a while.  In fact, a feeding tube was already ordered.  However, I asked if we could just give him a shot, and lo and behold, he scarfed down a bottle.  Since then, he has picked breastfeeding right back up (a near miracle) and never misses a meal.  To you, this may seem like no big deal, but believe me, for his condition it is HUGE.  There is another heart baby up here who had surgery three weeks ago and still is on a feeding tube.  The fact that Caleb has not needed that is incredibly encouraging.  We don't want to get our hopes up too much, but the doctors think if he continues to eat this well, we could go home on Friday.  !!!!!  Of course, we're holding that loosely, but OH MY GOSH!!!  I can't even imagine how good it will be to walk into my own home, with my husband and both my boys all there together.  It almost seems too good to be true.

There's an update.  I have more to write about, things I have been thinking about lately... but for now, I've got to go feed my baby boy.  My little fighter boy.  :)

Wednesday, February 9, 2011

Off the ventilator: part 2

After 3 more days on the ventilator, Caleb is tube free!  He's still got a few wires connected to the high-tech stickers that monitor breathing, heart rate, and oxygen levels.  There's also a nasal cannula pushing oxygen straight up both nostrils... other than that, tube free!

He's going to have a lifelong phobias to stickers and straws/tubes.

After Caleb failed the first extubation in the early AM on Sunday, the PICU doctor decided to keep him on the ventilator for a few days.  We gave it a second shot today at noon.  Now Katie and I are fighting a battle with our collective nerves.  I've felt all day like Caleb successfully breathing on his own is too good to be true.  It's been a constant battle with our minds to overcome our emotions.

Nine hours in, Caleb continues breathing well off of the ventilator.  People who know tell me that the goal is for him to make it 24 without the ventilator.  Please pray for Caleb and for us over the next 14 hours.  Also, please pray for our new friend Laura and Lawrie, her baby boy.  (I hope I spelled his name right, Laura).  Lawrie came off his vent today too.  Pray for her nerves and for Lawrie to persevere and breathe like a warrior.

Caleb loved to spend time on his belly (pre-extubation).  How 'bout them socks?

Caleb this afternoon (post-extubation).  Note: manly scar.