11th-Hour Reprieve!

After having the operation room booked and being prepped yesterday morning, Charlie was saved from several extra brain surgeries at the very last minute by his neurosurgeon who burst onto the scene and declared that he didn’t think our son’s new shunt was infected after all. This could still change but we were thrilled to bits that he was not going back under the knife to undo the surgery he had last week. And the shunt seems to be working much better than it was a few days ago.

Charlie has been pretty out of it since Wednesday morning so yesterday they stopped the morphine and Phenobarbitol. But he was still intubated and every time he came to he completely freaked out from the tube shoved down his throat. To be honest, last night was one of the worst nights I’ve spent in the NICU since this ordeal began, watching Charlie cry (silently because of the intubation) for hours and writhing in misery. I pulled a few Shirley MacLaines begging people to do something, convinced that the fact of being intubated was causing more problems than whatever was making them keep him intubated. Happily, the late-night doctors agreed and said he could probably be extubated in the morning. The problem was, if they knocked him out with more pain medication that would probably delay the extubation so he just had to get through the night, God love him. That boy has the strength of Hercules. I’ve had one surgery my whole life, a lowly appendectomy that I kvetched about for weeks. Kendall’s only surgery was her emergency C-section last April. But our boy has already had four major surgeries and gestationally he's less than a week old!

Thank God the official extubation order came through early this morning. Seeing the respiratory therapist yank that tube out of Charlie’s throat was literally one of the happiest moments of my life. He went back onto the nasal cannulas and it took most of the day to get his blood gases normalized but we talked the doctors into waiting before taking action because we knew Charlie could do it without further intervention which he did. Go, Charlie! Yes, yes, Mr. Evil Eye, you killjoy, I realize that there will be lots more challenges to come—maybe tomorrow, next week, next year, but hey, do me a favor, will you please? Shut the fuck up, I’m talking about TODAY! I’m so grateful for the thoughts and prayers of the many people rooting for Charlie, I truly believe that makes a huge difference. Thank you, thank you, thank you!

The photo above was taken shortly after extubation. Charlie still has a bit of generalized edema from the surgery and currently bears an uncanny resemblance to Jabba the Hutt but that’s already starting to correct itself. They also shaved his head for the surgery so he looks even more like me than usual (and believe me, Jabba and I are peas in a pod these days). But he was so, so much happier today, getting back to his old self, and I can’t wait until we can hold him and feed him again. But right now, I'm just rejoicing in his huge improvement over yesterday. Woo-hoo!

Update: I was surprised by some of the reactions to the above photo and the video—I was so relieved that Charlie was finally extubated that I thought my puffed-up Michelin Man looked so cute afterwards, but on second glance I can see how it seems a bit scary! Especially that position with his head pulled back to open his airway. I just left the hospital at midnight and most of the swelling is already gone, he's cute as a button. And I even got to hold him for three hours tonight after a week of deprivation. Double woo-hoo! And a prize for anyone who can identify who's singing in the video.

Comments

[maggie may]

oh that picture does break my heart a little. a lot. i'm glad this part is over for him now and he's feeling better.

[Helena Seli]

What a relief! So happy for Charlie and you all. Saying prayers for our daughter, Charlie and all the NICU babies every night...
Helena Seli

[Andrew Forsythe]

Danny, I'm so glad to read of Charlie's wonderful uptick today. Way to go, Charlie--- we're all cheering you on!

Andrew

[gorillabuns]

i must say, i have a hard time seeing him like this. reminds me of Thalon. so glad to hear the positive news and can't wait to see pics of him at his home.

[Laurie]

That picture really got to me. Wow. It is hard to put it in words. I am very moved to see Charlie like that. It gave me a small sense of what you must be going through.
I send my love and prayers to everyone.

[Felicia Park-Rogers]

This makes my day! I'm so happy for you all to avoid the surgery and have the intubation out and Charlie doesn't look like Jabba the Hut--he looks like a chubby, adorable, yummy, yummy baby. So amazing to compare from photos of just a few weeks ago. We'll continue to pray for Charlie, and all of you, and send love in your direction.

[sweetsalty kate]

Love. just love.

[Edelweiss Transplanted]

Oh my gosh, that's wonderful. Way to go, Charlie! Will keep praying that he's on a roll and that the tubes can be put away for good very soon.

[Julie R.]

Danny
Hooray for Charlie! I'm so glad you and Kendall can advocate for him. It must have been so hard for you last night, but your Shirley MacLaine impersonation paid off!

Love,
Julie

[mary]

Thank God! I've been holding my breath hoping for some good news. I can't imagine how hard this is for you and your family. My son had to have a minor surgery when he was 2 weeks old and when they wheeled him a way it was like a kick in the gut. I hope and pray that you don't have to endure much more of this- that soon Charlie will be home with you.

[Julie Schreiber]

Luckily, he can pull the Jabba the Hut look off...he knows how to make it work for him! Kenahorra, poo poo, he looks so sweet. I am sorry to hear how unhappy he was...I am sure that was so hard for you to watch and endure...I love that you channeled some Shirley Mc. for him! He is lucky to have such a caring Daddy! As always, sending love and positive thoughts to you all...xo, Julie

[Cynthia Reich]

Dear Danny,

You don't know how grateful I am to you for keeping us posted. I am hugely relieved. You and Kendall -- keep up the good work! Parents just know . . .

Love,
Cynthia

[Gordon]

Dear Danny,

You have amazing strength. I would be a crying crazy person through all this. But, the way you are handling everything is exactly what our Charlie needs. It's yours and Kendall's abundance of love and attention and optimism that has made all the difference. Hang on. We're coming into the (going) home stretch. Come on, Charlie ! Come on, Charlie !

XO,
Gordon

[Adriana Bliss]

Big hugs to all of you - I wish there were words that could magically heal the daily aches and jabs of this journey you're on. All I can do is...give you all a virtual hug.

[Pam P.]

Do they have such a thing as kangaroo care with mere acquaintances? I have such an urge to hug that kid. Sending love to you, Kendall and Charlie...

[Heather P.]

Poor baby Charlie! Know that you are in my prayers. G-d Bless!

[Catherine W]

I'm so very glad that it looks as though the shunt is good.
I am so terribly sorry that you & Charlie had to endure such an awful, awful night. The strength of Hercules is right.
Yay for extubation and yay for three hour holds and yay for TODAY.

[La Framéricaine]

Good. I like doctors running in at the last minute screaming "Hold the scapels!" Good.

He looks beautiful, if somewhat indisposed. Jaba the Hut is good... Hercules is even better and, given my fondness for Steve Reeves, I will hereforth always think of Charlie as Hercules. Works very nicely for me.

Amitiés,

[Pam G]

Thanks for the update. Have continued strength in the days to come. You're all in our thoughts.

[Maria Sosa]

Good for Charlie!

[Chris]

My heart was beating when I saw your post in my Reader this morning. We'll join you in the "great feeling" today! I'm sorry poor Charlie had to endure a terrible night of intubation-awareness. I was intubated once and it's miserable. Worse than the surgery! [for me]

He looks ADORABLE! We'll include thanks in our prayers today, and we'll continue to keep Charlie, you and Mrs. Miller in our thoughts and prayers. Go Charlie!

[Amy]

I continue to think positive thoughts for Charlie, you and your family. I am happy he is extubated... his poor sweet body... enough already! I hope he coninutes to have better days :)

[Neil]

That made my WEEK.

[KWild]

I am so so relieved. Keep on keepin' on!

[Erica M]

Nasal cannulas are the bomb! Way better than the instrusive tubing. Charlie looks great. Stop making me cry when I come by for updates. Keep making me cry when I come by for updates.

[jackie persson]

cannot even imagine the brain hell you and Kendall have been through already. You guys are bricks, just like your son.

[Lisa D]

Hi - I found your blog a bit ago and have been following it since. We've been through an eerily similar experience. Just want you to know that we are rooting for Charlie and know that he is going to be just fine (!!!) and will bring you more and more joy in each of his accomplishments. Keep your chin up and know that life does get back to normal (especially once home from the hospital). Go Charlie, go!!

[Marilyn Molnar]

Dear Danny,

Charlie definitely has your "Hercules gene" ... you are both strong as any human can be enduring all these procedures. Keep on getting stronger, Charlie and again, thanks to the wonderful doctors, especially the last one who yelled, "stop the presses".

I think it's Pearl Bailey singing ... am I correct?

Love,
Marilyn

[Patsy]

A big WOO-HOO
You go Charlie

[churlita]

I'm so glad things are going for Charlie. He looks so good and chunky.

[Sally]

I think he looks wonderful, even with the tubes and wires - the rolls on his neck are delicious (and will be quite the catch-all for food when he gets to the solid stuff!)I am so glad and relieved to hear things improved and hope that the shunt continues to do its job properly so there will be no more surgeries. All the best to you and Kendall and Charlie - we are thinking of you all the time!

[Elise]

Yay!!! I am so happy to hear Charlie's situation improved and there was no infection after all. I'm so glad the shunt appears to be working properly! Brave little fighter that Charlie!

[Ellen B.]

That kid is a trooper! He's gonna be fine.

Sounds like Pearl Bailey singin' to me. I wasn't a host of "Classic American Music" on KPCC for nothin'!

[Jane]

Pearl Bailey?

You and Kendall just have to be at the point where you want to scream "Leave my baby alone!" Poor Charlie. I love him so much. I hope he has no more surgeries, and gets to go home soon. That will be the happiest day of all.

Prayers and love, always.

[susie specter]

God bless him! He is a fighter, please God no more tubes! Sending you all loving, healing thoughts and prayers.

[Jeryl Chico]

Your post brought a BIG smile to my face!! I've been following your journey in silence but tonight I wanted to shout a bit YAHOOOO, so there you go. You and your family are in my prayers always.

[Alan Spector]

Great news,Danny. He's looking bigger and stronger each time I see him. Sounds like Pearl Bailey is singing. Do I really win a prize?

[Margie]

Relieved for the update. Looking at the photos today I imagined the day I finally meet Charlie in person. I'll expect him to recognize me because after all I've known him since he was born. Grateful to be in the loop. Think of you every day of no post (no pressure of course).

[Randy]

Charlie looks beautiful to me. As others have said, he sure is a fighter! Takes after his mom & dad, I'm sure. Thoughts & prayers with all of you.

[Danny]

Thank you all so much for your caring thoughts. That Charlie has you all in his life thrills me to no end. I wish you could all come visit him in the NICU. He's doing so much better and even has started back on food (only 5 cc a feeding to start but he's loving it).

Marilyn, Ellen, Jane, and Alan, you win a copy of "Won't You Come Home, Bill Bailey?" Hard to believe Pearl died 19 years ago this week. I love that you all remember her but my imaginary editors say I need to drop those references and try to appeal to the 18-24 demographic. Fat chance.

[Candi Ince]

Way to fight through it, Charlie!! I'm glad things are getting back to "normal" with the feeding and the snuggles. You're all in my thoughts!

[Mary Shannon Baim]

It sounds like Pearl Bailey singing what you must be singing aloud in the car. I know we've all been holding our breath. A prize? Just keep writing. We're all invested emotionally now.

[Lori Kirkland Baker]

Such a sweet boy. I bet he can't wait till he can go home where those nurses won't mess with him anymore.

xo
Lori

[Julie]

Any picture of life is a beautiful picture......

[Vicki]

I'm a lurker. Just wanted to let you know that this grandma in Tennessee reads your blog regularly and thinks about your family every day. Your writing skills have made it possible for us to know more than we ever could imagine about the NICU experience. And your willingness to write on a very personal level, as well as post pictures, has caused your readers to care very much about a family some of us have never met.

You all seem like such good people. Charlie is lucky to have a family like yours.

Vicki

[neil fleischman]

May G-d grant Charlie continued healing - a refuah sheleimah! My prayers are wit you.

[Arlene]

Charlie is looking wonderful!!! He is getting stronger and stronger everyday. I will keep sending good thoughts your way! He will be home before you know it, sleeping in his own crib...YAY!!!

[Decca]

I think he looks fat and happy, more like baby Buddha than Jabba.

[OldOldLady Of The Hills]

In just about three seconds I knew it was PEARL BAILEY...I think I am right! Ive been catching up on your posts Danny....The Ups & Downs seem to be diminishing somewhat..May that continue on from now on....HUGS TO YOU ALL!