Friday, March 25, 2011

Return of the White Ninja!

Hello everybody! This is Jason with the daily update. I'm feeling a little pressure today because my friends, the Thurmonds, just stopped by and told me they could always tell who was writing the blog because Kristin's posts are saccharin-sweet, real three-hankie numbers. On the other hand mine are allegedly "hilarious" (it must have been the B.A. Baracus allusion). At any rate, I'll do my best to deliver. Onto today's events...

Samuel woke up this morning a happy-go-lucky 8-day-old whose stormy ocean eyes were wide open and very alert, which is how I like him best; I think it's because I'm less afraid of him falling asleep and not waking up. He was in fine fettle, despite a couple of issues with his "pressure trials," the tests that would determine whether or not he was able to breathe without the ventilator. Leading up to yesterday evening, the doctors were concerned that Sam may not be ready for extubation yet, not only because of a possible pleural effusion, but also because he was struggling with tachypnea, a very high respiratory rate which can sometimes be a sign that the heart and lungs are not working efficiently enough. They wanted more information. His doctors wanted more tests run to avoid extubating him prematurely. During the overnight trials, perhaps as a result of the tachypnea, Sam experienced supraventricular tachycardia, or SVT in medical lingo. The great irony here is that SVT is the exact opposite of bradycardia, the condition that had so frightened us in the days leading up to his surgery. Instead of having an exceptionally low heart-rate leading to too-slow respiration, now Sam had an exceptionally high respiration rate leading to a too-high heart rate. Did I mention Sam is not without a sense of humor?

Nevertheless, after a chest x-ray, a clean ultrasound, and this morning's rounds, the doctors decided to extubate anyway on the condition that Sam return to CPAP immediately. Enter...the white ninja reincarnated!

He was not happy. In spite of the nurse's and my wife's admirable efforts to keep ol' Wolfman calm during the proceedings, you can see he was not only less-than-thrilled about losing his pleural crutch but also unappreciative of having to go back on the PAP. He fought like the dickens, which of course nearly led to another attack of SVT.

However, in the end cooler heads prevailed, and while my lovely wife may have worn this expression after the 45 minutes it took to calm him down, he did--eventually--relax into the serenity of the CPAP. Sam was so thankful towards her that he peed on her during the next diaper change. One for the Wolfman!

In the end, with his trusty steed ("My First Teddy Bear") by his side and looking after his hat, Samuel slept. It was a tough transitional day for him, and the day ain't over yet...but the doctors like his progress and are hopeful that he may unmask some time either tonight or tomorrow.

As always, much love and thanks to those of you who are thinking about us.


  1. I think Sam looks more like a burrito than a ninja. Also, Kristin, considered yourself christened by Sam, a major milestone in parenting boys. Sam, can't wait to see you soon, little guy! love, Aunt Stephanie

  2. Jason, your friends are right. Everyone I've shared your blog with is impressed by your wit and Kristin's eloquence. It seems to merit a shout out to all of our Bread Loaf practice. :) But seriously, I hope you're both finding writing cathartic. I know it is for those of us reading. Your little guy looks like such a good sport, even with all of the tubes and head gear and your reports of his screaming. You did tell him to be a fighter, after all. This time the picture of Kristin looking at Sam is the tear jerker. Kristin, I wish I could give you a hug. But just think, someday Sam's going to bring one of these pictures in to show and tell to brag about how tough he was and how much the two of you love him, and he'll feel just like the lucky and special guy he is.
    I'll keep thinking of you,

  3. The "strange lady in Oklahoma" again- just saying a little prayer for Wolfie, but especially for Kristin. Being a mom is the best, most exhausting and anxiety producing job I've ever had (my other job as a crisis counselor for abused and neglected kids was actually relaxing in comparison!). You are doing some pretty extreme mommying and I can imagine what it must be like for you. My heart and prayers for complete and utter peace are with you.

  4. Wow! Sam is moving along very quickly! Try not to worry about the pleural effusion; it's really common. Kris, I'm glad you stepped outside. It's no good to be in the hospital that long unless your physically connected to a machine of some kind. (Remember, they made rules about that. 30 hours at a time...then natural sunlight or, at least, air. And we always say that a cupcake is deserved too.) Congrats on the urine baptism. Those little boys are sneaky. Wolfie is so very cute. I'm not sure if it's the angle, but he looks really long too! Wish I were there. Can't wait to see you guys. Miss and love you!

  5. kristin, u look beautiful! still thinking of u all the time. xoxoxo

  6. how wonderful that he was extubated-- that's huge, right!?! :-)

  7. Really hard no doubt to see him in distress. Suppose the upside is that the procedure made him mad which is a normal healthy response. I would be worried if he just lay there not reacting. Doesn't make it easy for the parents though.

  8. Such a telling, beautiful photo of Kristin - with all the love, exhaustion, concern, hope, fear, delight, & endurance of a dedicated mommy. ... And the Wrath of Sam is a splendid display of the "dauntless spirit of resolution" that will continue to serve him well.

  9. Tammi T. (mom of an HLHS boy)March 25, 2011 at 8:56 PM

    I remember the struggles of the C-PAP! Our Daniel wasn't too happy with it either. I'll pray that Samuel can be rid of it soon. I can totally empathize with Kristin ... been there, "felt that" ... will be praying for her, too.

    LOVE Samuel's trusty steed! Every baby boy needs his first Teddy to keep him company and to be there for him. They always know what to say and never complain. Great companions! ;)

    You all our in our prayers!

  10. Beautiful baby...beautiful momma. Hang in there Sister. :)

  11. Hi Kristin and Jason,
    I have just spent the last 45 mins getting caught up on all of your news through your blogs. I also JUST received a photo from Stephanie showing Sam extubated! Huge news! He is such a fighter, and you both are so brave. Ahead of the curve indeed! I love the photos of you holding Sam, and of Kristin just watching him in amazement, overwhelmed with emotion and fatigue. I see a lot of parents in similar situations as I am a NICU nurse. We always wonder what we can say or do to just quietly help our parents. You are learning so much from docs, nurses, and especially from Sam. How difficult it is to see friends in such an "out of my control" situation; Sam and the doctors are in control, and what a scary ride it is! I am SO excited for you that you are journaling and blogging all of the events in his 9 days so far....the ups and the downs, the entire journey of you as parents, feeling the love and support from everywhere! What a treasure it is to have all of this. What is next? Celebrating advance of his feedings, weaning off of that darn CPAP, lab results, avoiding infections and bradycardia, and much more holding time! Whether you call him a burrito, or a Ninja warrior, he is certainly a precious little gift from heaven and a BRAVE teacher. Through Stephanie, I will send you some gift cards for a lunch or dinner this week. You two are already AMAZING parents! Thank you for sharing your story. You make me again realize why I chose to do what I do. Sending ALL of our love, Jodi and Paul Cattich

  12. Poor little man. I can so understand Sam's frustration ...and you can't explain it to him. Glad to see he finally slept.
    I love that photo of Kristin. A loving Mommy at her best!

    Prayers from the Netherlands continue for you all!