Friday, March 18, 2011

To sleep, perchance to dream...

Wow. When we started this, Kristin and I expected that it would be a really useful way of keeping family and friends updated; now it's becoming much more. Before I get to today's news, I would just like to say how appreciative Samuel and we are for all of the thoughts and love. While we may tend a bit towards the secular, we are nonetheless humbled by the outpouring of love we've received from well-wishers all over the country, people who only know us through this blog. We had comments from Bowen's mom--Kristin was especially moved by his progress while we were preparing for our journey. We heard from Marie Louise Ludwig, whose son is a 22-year-old survivor thanks to the Dr. Norwood. Kim Weiss sent thoughts, and Brenda R., a colleague of mine with her own cardiac kid, chimed in as well (btw, Brenda...soooo right about the hand lotion!). Not to mention our students who are keeping us in their thoughts and even checking on our kitties while we are away. Truly humbling.

Thank you.

Now, before I "thank you" to death (after all this ain't the Oscars), the day's news. We had four banner events.

1. Kristin was discharged from the hospital across the street. Woohoo! It may not seem that exciting, but now two things can happen: A) She can spend a lot more time with Samuel; she managed a little successful feeding today. And B) We won't get phone calls from the maternity ward wondering where she is in the middle of the night. Seriously, last night they tracked her down and made me escort her back to her room. It was crazy. They acted all nice about it, but there was, you know, that edge to it.


2. Wolfie got a new hat. Remember: we're celebrating the little things. Apparently, he's a lion today. He wouldn't stay still for this picture, but he's so cute I decided I didn't care. We'll try to get a better photo tomorrow.


3. We got some visitors! This is his aunt contemplating him. Other friends, including school friends, came by or talked on the phone, which was lovely until I had to hang up on one in the middle of a call, which leads us to the motif of today's entry...


4. Sleep. Forget my lack of it; now there's a more significant issue. Wolf-Sam has got the opposite problem of me: he sleeps too much and too deeply! While the doctors seem optimistic regarding some of his new data today, a new complication has come to light. Remember (it was only posted yesterday?!) when I was woken up to alarms and the personnel stampede? Unfortunately, Samuel is making a habit of such moments. He has taken to falling into such a deep sleep that he simply stops breathing (sorry, Sue...that's why I hung up on you). He had at least double-digit episodes today, one of which occurred while he was hanging out in my lap watching March Madness. He was fine one moment, rooting on Ohio State (go Buckeyes!); the next moment, he was turning blue (stupid Wolverines;). Not flattering for his fine complexion and geographical heritage, I'm afraid. A little chest-rubbing, a little foot pinch, a little oxygen over the nose and he comes out of it, but the episodes are far too frequent for comfort. The doctors have tried various solutions so far: lowering the prostaglandins, adding caffeine to his diet (he prefers it mainlined), constantly sending high oxygen flow into his nose. And yet, he seems determined to have his way. Surgery is three days away, a metaphor for eternity according to the Elizabethan writers, and we'd like to get him there without having to be intubated. The cardiologist just announced that the odds were about 50/50. Sounds like a hedge to me. They will try a technique called Continuous Positive Airway Pressure (CPAP) first to avoid intubation, but I'm not holding my breath. In fact, it's 1 a.m. and I'm going to sleep. Much love to everybody following, and until morning brings the results of the CPAP machine, "Good night, sweet prince" (Ham. V.ii. 371). But if any "noble hearts" start cracking or any "flights of angels" start singing, you'd better wake your little baby tush up!

20 comments:

  1. Lady Joanne of DublinMarch 19, 2011 at 2:09 AM

    Jason, you just made me laugh-- Kristin roaming the maternity ward at 4am and the Michigan reference. You know, I'm a Michigan fan, but in Wolfie's case, forget those damn Wolverines and go Bucks! Jeez, never thought I'd say that...oy. Glad to hear from you as always and love all the pics! Thinking of you as always and sending good, secular vibes to Denver, especially on Monday. Love, love, love you all!

    ReplyDelete
  2. I love this blog!!!! We are all thinking about your adorable family! We love you guys!!! ;)

    ReplyDelete
  3. Hi, I'm Riete from the Netherlands, Europe. I heard of you via Bowen's Heart. I hope you don't mind me following your blog here too.
    Congratulations on the birth of little Wolfie. I hope and pray all will turn out well.

    ReplyDelete
  4. This blog is beautiful! The fact that you're brightening & enriching the lives of so many while you're in the midst of this struggle simply confirms how astonishing Wolfie & his parents are. Love you all. Thinking of you constantly.

    ReplyDelete
  5. I also lean towards the secular but am nonetheless thinking of your little boy and your new family. Best of luck in the coming days.

    ReplyDelete
  6. I have been following all progress!! My thoughts and prayers are with wolfie and you. I loved the pic of you holding him. All my positive thoughts will be with you. Teresa Baisden

    ReplyDelete
  7. So many prayers are storming heaven for your little one!

    ReplyDelete
  8. Samuel is a beautiful baby boy.
    Your strenght and love for Samuel makes me proud to be related to you.
    I have the three of you in my heart.
    Love, Uncle John

    ReplyDelete
  9. Ms. Leclaire,
    Have you seen Matt Hammit's twitter feed today???? Wolfie is front and center :) Hope you are all doing well.

    ReplyDelete
  10. First of all: Congratulations to all for a successful arrival of little Wolfie! What an adorable little guy! You three are amazing in your courage and strength (and not-so-subtle Michigan references)! Izzy and I are thinking of you guys, especially for the big day on Monday!!! I'll keep reading the blog for updates :) Jenn

    ReplyDelete
  11. Samuel, Welcome!
    I look for news on your blog daily. I think of you more than you can imagine.
    Love to you and your family,
    Walswee

    ReplyDelete
  12. I just wanted to say I have followed this blog for a couple of days. I know I don't know you in real life, but wanted to say welcome to little Samuel. I will be keeping him, your family, and all the medical staff who take care of him in my thoughts and prayers. May God hold you in His perfect peace. May He give you a strength beyond your understanding.

    I know I am looking forward to following little Wolfie's progress and his story. I believe he will touch the hearts of many people, for many reasons. Again, I will be praying for all of you.

    ReplyDelete
  13. Hey, we're all thinking of you. Sam is well-wrapped in warm thoughts and prayers.

    ReplyDelete
  14. Thank you for sharing, I am following Wolfie's progress each day. I am keeping you all in my prayers. He is a handsome little man!

    ReplyDelete
  15. We wish you the very best of luck in the upcoming days; our thoughts are with you. xox, Sarah & Steve Strasser

    ReplyDelete
  16. Kris - congrats on starting breastfeeding! Keep up the hard work. So interesting what Jason wrote about faith. I (I think i am as secular as they come), have been praying every morning with baby Max for baby Samuel. We send him a Jew-Bu-Catholic prayer - and so much love! Keep posting. Wishing all three of you and your families all the strength in the world for Samuel's upcoming first procedure. We love you, Jules

    ReplyDelete
  17. I'm constantly thinking of you guys. Thanks for the posts/updates/pics (Samuel is beautiful!)...makes me feel not quite as far away. I so wish I could pop in for a visit! Miss and love you, Allie

    ReplyDelete
  18. Haha! I'm the stranger in Oklahoma praying for Wolfie. I'm Christian. If anything can make you not secular, it would be seeing your newborn baby sick! I am also a mom of two little boys (2.5 and 5 months). If it at all bothers you I will absolutely cease to come onto your blog and state my prayers for your precious baby. I wish to bring you peace. Found your blog through Bowen's.

    ReplyDelete
  19. Hello. I discovered your blog through Bowensheart .... another HLHS blog. I'm also a mother of a HLHS 6 1/2 year old boy named Daniel. I know some of what you are experiencing. If it is OK with you, we'll add Wolfie (or should I call him Samuel?) to our list of other CHD children for which we pray.

    ReplyDelete
  20. We are all there with you on this journey as we read your blog. Thanks for taking the time to update and reminding us all how precious life is.

    ReplyDelete