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.


    

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.

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.

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.  

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.  :)

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.

10 days in

Katie and I are in the PICU (that's the Pediatric Intensive Care Unit) at the Peyton Manning's Children's Hospital.  I'm sitting on Peyton's couch watching Caleb.  We watched the Sunday service at our home church streaming live on our new computer (Thanks, UJ and AJ!).  We're thankful for the technology that both keeps us connected to the world and sustains our son.  God, in his wisdom and foresight, made a world where all this is possible:  A world where the stuff that makes up rocks and earth could be molded into computer chips and oxygen monitors.  I marvel at the depth of possibility in his creation.  This earth is literally filled with the evidence of His creative glory.

Caleb spent Saturday breathing on his own (without ventilator)!  Saturday was a great day.  Jonah met his little brother for the first time.  Katie got to hold Caleb for the first time since Thursday.  Our small group came by and we worshipped God in the chapel and had communion (a.k.a. dinner at Chipotle).  By last night, Caleb was struggling to breathe.  He heaved his entire body into a single breath.  It was so painful to watch... I sent out a text for people to pray, and (seriously) he calmed down and breathed normally for a few hours.  

The reality is that Caleb needed to be back on the ventilator to continue resting, recovering from surgery, and adjusting to the changes in his heart.  Breathing on his own was wearing him out.  The nurse re-intubated him at 1:30 am.  The doctor said it's common for babies to fail the first extubation.  Interestingly, white males are most likely to fail.  This trend is well documented in PICU circles -- around here, it's known as the "wimpy white boy" phenomenon.  Girls and non-caucasian boys are more likely to succeed at their first attempt off of the ventilator.  Katie commented that the trend continues into adulthood for most of us.  What a jokester!  sigh... she's kind of right.

Caleb will be on the ventilator for another couple of days.  He's (finally) on a feeding tube connected to huge plastic syringe full of Katie's milk!  That's exciting.  1) Please keep praying for his strength and improvement.  2) Pray for God to sustain the life in his lungs and heart.  3) Pray for the success of the next extubation.  Failing the next attempt at getting off of the ventilator could point to more heart issues & more hospital time.

Please keep our family in your prayers.  As parents, this is inexplicably difficult.  All these ups and downs (though Caleb seems to trend toward improvement) are beginning to wear on us... especially Katie this time.  4) Continue to pray for encouragement/faith and against depression/doubt.

Daniel

February 6