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

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.

Need your prayers

It's been such a wonderful few days, bonding with my sweet little boy.  Tonight has been very emotional though.  We met with the cardiologist today and got much more information on the procedure that Caleb will have tomorrow, and it's actually riskier than we thought.  We've been basking in the bliss of good news for days and kind of forgot that with Caleb, we can't take for granted that there won't be hurdles to overcome.  According to the doc, tomorrow is Caleb's next hurdle.  They expect everything to go smoothly, but it's a big enough deal that the heart surgeon will be on hand because if it doesn't, they have to take him straight to surgery and we're back on the original track of open-heart surgery and long-term hospital stay.  This upset us a little, because we've been so happy with how well things are going that we didn't realize that Caleb is not quite out of the woods.  Tomorrow will either be a huge success that puts us on the path of going home soon with a strong baby, or will be a day that sets us back big time.  Please, please pray for our baby and for us.  We have been very emotional tonight.  We decided to come home and see Jonah for a bit and have a break from the hospital before the challenging day ahead.  I'm so glad we did, because Jonah was SO excited to see us.  But we both cried and cried when we put him to bed and said goodbye again.  And we miss Caleb terribly now that we're here.  It's so hard to have our boys in two different places.  So please pray for renewed strength and for all four of us to be safe in Jesus' hands.  We'll let the news out when the doctors come out and talk to us after Caleb's heart catheterization tomorrow.  Thank you so much for thinking for us and praying for us, it means the world.

Hip hip hooray!

So have you SEEN my son?!  He's pretty amazing!  Caleb James Kinnaird was born Thursday morning at 9:41 a.m. and from the moment he was out, we have been overwhelmed with good news.  I had tears streaming down my face in the operating room, because as soon as Caleb came out he started wailing; this wonderful, NORMAL baby wail.  And he was pink and squishy, just like babies should be!  This was a great start.  He weighed in at 6 lbs. 11 oz, and Daniel got to go in while they ran initial tests on Caleb and I recovered from surgery.  The news was good from the beginning... and just got better throughout the day.  He does NOT have to have surgery for now!  He was doing so well so soon that we got to hold him and snuggle him the very first day.  And I even got to start breastfeeding him the next morning.  This was so different than what I anticipated this weekend to be like.  I actually just got done nursing him and while we were cuddling I just couldn't help but feel like this was a dream.  But it's not!  It's real, and it's totally the result of God taking care of us and our little boy.  

I need to rest but wanted to give a few details and pictures.  Caleb will have to have a heart catherization on Monday afternoon.  This procedure will open up and stretch out a small hole that exists between two chambers of his heart; the hole is actually helping maintain blood flow to where it needs to be, so they want to keep that hole from closing.  It will take about 2 hours and will be performed at Peyton Manning Children's Hospital.  Caleb will come right back here to the NICU when it's over.  They expect him to have a little bit of a rough day, just being fussy and cranky from not getting to eat for quite a while, but they say the procedure is pretty minor.  

Specific prayer requests:

- Pray for the heart cath to go perfectly well.  Pray that Caleb recovers quickly and that the procedure does what the doctors hope it will do.

- Pray for Jonah.  It's getting harder on him to be away from us and we feel torn between wanting to be with him and wanting to be with Caleb.  I miss him a lot and am praying that God will help comfort Jonah and make him feel secure.

- Pray that somehow I could get approved to stay here in the hospital as a patient one more night.  When I get discharged, potentially Sunday afternoon, I'll have to move to a hotel and of course it will be much less convenient than being down the hall from Caleb.  I'm going to ask my doctor for this in the morning.

Here's some pics!

Thanks for covering us with prayer and encouragement, we feel it!  Our family is so blessed and thankful!  Thank you Jesus!

Info on Caleb's birth

Caleb will be here in 4 days!  I wanted to post some information about our hospital stay for anyone wanting to visit us, contact us, or hear updates on how Caleb is doing.  Thank you so much for your prayers this week- we will need them for sure.  It feels so good to have so much support as we face such a challenging new time in our life.  


Here's what you might want to know:

1.  My c-section is scheduled for 9:30 a.m. this Thursday.  A friend of ours from church, Amanda, will be sending out a few texts that day to anyone who would like to hear about what's happening.  If you are interested in getting a few updates that day, please email me at kakinnaird@hotmail.com with your cell phone number, and I will pass it on to her.  After Thursday, Daniel or I will be posting regular updates on this blog about Caleb's progress.  Please check here to see how our baby boy is doing, and for pictures.

2.  If you are interested in coming to visit, here is the address for where we will be: St. Vincents Women's Hospital, 8111 Township Line Road, Indianapolis.  To visit us, come to the main entrance at the Women's Hospital, which is door #10.  When you come in, the main information desk is right there, and you would just tell them our names and they will direct you upstairs to our room.  PLEASE:  If you want to visit us, which we would love, please call before you come to make sure it's a good time.  Caleb's condition will likely mean ups and downs, good days and bad days, and you wouldn't want to show up in the middle of a crisis.  So please call and check with us before heading over.  If you need our numbers, shoot me an email. 

3.  We don't know how long Caleb will be in the hospital, but the doctors say the best case scenario is 2-3 weeks.  Right now, Daniel plans to do a lot of going back and forth so he can be at home with Jonah as much as possible.  Please pray for Jonah during the next few weeks and months as he copes with being away from his mommy so much.  And please feel free to encourage Daniel with your support and presence.  He has expressed to me how much he hopes people will remember him while he's at home keeping life going while I spend the majority of my time at St. Vincents.  His phone number is 465-2246 and I'm sure he'd love to hear from you.

If you have any questions, please email me by Wednesday.  Thank you in advance for your prayers this week.  We are just ready to have Caleb here and see what exactly we're facing.  Here we go! 

Being honest

I just ate 4 Eggo waffles, a huge bowl of Trix cereal and a movie-theater-size box of Nerds for supper.  And despite all the criticism I'm receiving from my husband, I don't feel bad one bit.  

The title of this blog post is NOT "Disciplined Eating Habits".

This week was a doozy (doozie? doozee?). Daniel was gone for almost a week to a conference in Chicago, leaving me here to take care of Jonah by myself.  Normally when he travels it's no big deal, but I am enormously pregnant and chasing a toddler around proved to be difficult.  I second the notion Jonah had a couple days ago when he looked at my belly and said, "Cay-wub, come out!".  We are all ready for this baby to be here.  T-minus 17 days.  

I think this blog post will serve as a kind of confessional for me today.  I'm a stay-at-home mom and the last few months I have been wrestling with this lifestyle that I've chosen.  There are so many times when I think, "what the heck am I doing with my days?"  8 pm rolls around and I am still in yoga pants, with the Sesame Street theme song stuck in my head, desperate to just sit on the couch and have a conversation with someone that can pronounce their L's and doesn't invite me to look at their boogies.  And I'm laughing as I write that, because any mother is nodding along as they read this thinking, yep, I hear ya sister.  We all have those days, when we just want to be in grown-up world and not be so needed 24 hours a day.  Wouldn't it be nice to somehow have been prepared for how demanding it is to be a parent?  There's no way to prepare for this gig.  And it's a good thing, because how many of us would be brave enough to go through with it if we knew how hard it was going to be?  Thank goodness for our ignorance!  

Of course I love being a mom; it's the best job in the world.  But at the end of the day, sometimes I feel like I'm not very good at this.  I think, maybe parenting should be a little more enjoyable and a little less overwhelming, exhausting, and scream-into-a-pillow-inducing.  You know what makes me feel this way?  The fact that hardly anyone describes mommyhood like that.  Why don't more of us admit to these low points of self-doubt and desperation?  I have my fair share.  For example, on Saturday morning, Daniel had been gone for 5 days and Jonah had decided that every day Daddy was gone was going to be one day he didn't sleep.  So I was exhausted and had almost reached the point of desperation.  And at 5:00 in the morning, after already getting out of his bed ALL NIGHT LONG, he came into my room and declared that he wanted Life cereal.  And I burst into tears.  I literally begged my 2-year old son to leave me alone and let me sleep.  He giggled and said, "Mommy crying.  My want orange juice."  I cried harder and put my pillow over my head.  A wave of despair came over me and I had one of those moments where I thought about how many years it would be before I had the freedom again to get out of bed on a Saturday when I wanted to.  

This is what I'm talking about.  These are the moments I have powered through lately, and I confess that I have ugly thoughts sometimes about this stage of life.  And you know what?  That's all there is to it.  Parenting is just really hard.  There's no nice, fluffy way to end that thought.  Yes, I could talk about how it's so worth it (which it is) and how this too shall pass (which it will) and how much I adore my boy (which I do).  But sometimes it just feels good to just admit how hard it is and leave it at that.  So there's my confession.  I'm a mama who is struggling through this parenting thing and some days feel like it might cause me to lose my mind.  And I hope somebody else just needed to hear that you're not alone today.  Hopefully someone besides me feels like she is, by grace, just keeping her head above water sometimes.  Let's just say that more often, can we?  Then maybe we'll stop feeling so much mom-guilt and feel encouraged by the fact that our child-induced craziness is just normal.

Now that I've said that, I can actually laugh at the fact that Jonah had a Life cereal craving at 5:00 in the morning.  Hey, at least he wasn't asking for a giant box of Nerds.