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


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.

Sunday, February 6, 2011

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.

February 6

Thursday, February 3, 2011

hard days

Sometimes Daniel and I just have to take a minute and walk away from Caleb's bed to let out some tears and gather ourselves.  We just came back from one of those little moments, and I just said to Daniel, "I can't believe this is our life."  What a surreal week.  Jonah came to stay with us yesterday and this morning we were all three lying in bed watching cartoons and there was a bear talking about hibernation.  I think it might be nice to push a button and just hibernate through these weeks.

I know people have been surprised to hear that Caleb will now be having surgery, considering how great everything seemed the first few days.  Believe me, it's hard for us to believe too.  Caleb looked great for 4 great days.  Then on Monday we had a successful heart cath and were told we were going home by Friday.  Monday night we went out to dinner to celebrate.  When we came back to see Caleb at 8:00, we came through the door of the NICU and there was a flurry of activity around Caleb's bed.  While we were gone, Caleb's heart rate suddenly shot up to 200, he became unstable and they couldn't figure out what was wrong.  I'll spare you all the medical jargon, but basically it was so bad that we almost lost him.

It was the worst, darkest night of my life standing next to his bed unable to do anything while all these people tried to figure out why my son was not recovering.  They got him stable in the middle of the night, but still didn't know what had happened.  Tuesday they thought maybe he just had a hard time recovering from the cath procedure.  We got to hold him, feed him, and thought he was on the mend.

Then again, in the middle of the night, he had another episode and had to be put back on the ventilator.  When we talked to the doctors, they were very concerned.  The cardiologists came and did an echo and found that too much blood is going to his lungs and not enough to the rest of his body.  The only real solution is surgery.  Yesterday was a rough day, watching Caleb struggle and suffer and just having to wait until the docs figured out the problem.  He is stable again for now, but we are getting ready to be transferred over to the Peyton Manning Children's Hospital this afternoon, in prep for surgery in the morning.  The doctors are all in agreement that this is what he needs so we are thankful for clarity.  Those hours of not knowing what was going on were brutal for us as parents.  Right now we're sitting by Caleb's bedside, waiting on Dr. Abraham, the surgeon, to come meet with us to go over what we can expect over the next couple weeks.

I don't think I'll ever be able to help people understand what the last few days have been like.  Your prayers and encouragement have been a lifeline to us in the most painful time in our lives.  Please, please pray for tomorrow's surgery to be a success and for Caleb to recover quickly and without any additional serious episodes.  Pray for God to sustain Caleb's life.  Pray for us.  Pray for courage, peace, and for God to sustain us for the inevitable ups and downs of having a heart baby.