It’s unbelievable how much my life has changed since April 27th. So much so that I feel like I’m in an alternate universe and only have occasional moments of bleedthrough to my previous existence and the world at large. “Oh,” I thought with a start yesterday as I was taking a walk around Cedars, “it’s the middle of summer! How did that happen?” As I walked down the commercial district of Third Street in between La Cienega and Fairfax, I was shocked to see countless stores and restaurants shuttered or for lease. Oh yeah, we’re in the middle of a hideous recession. Depression, maybe? I wonder how Obama is doing as President. There’s something big going on in Iran, isn’t there? China, too? I know that Michael Jackson died because the news spread through the NICU like wildfire. One of the nurses even went to the memorial. But it’s crazy how uninformed I am about the world in general. My entire world is the Cedars-Sinai Neonatal Intensive Care Unit. I know this won’t last forever (well, sometimes I have to remind myself of that) but this is where I am from early morning to late at night (with various therapy, eating, writing, and shift-change breaks).
Remember that California history book I was writing for 4th graders? I had asked to write one more chapter, convinced I was ready to get back to work, but in the end I just couldn’t do it. I loved that project which I had been working on since last year, but when I tried to get back into it I soon remembered that it required about 8-10 hours a day researching in the library. Normally there’s nothing I’d rather do but not now, it’s just not possible. So I had to reluctantly inform the publisher that I couldn’t do it. Not with Charlie’s upcoming surgeries and daily crises and triumphs and therapies. So now I am truly unemployed for the first time in ages. Very scary but it’s not forever. I’m hoping to drum up some editing work that I can do in the NICU and of course we’re hoping he’ll be home some time in August, maybe September.
The good news on his progress is that the surgery to reconnect his intestines is tentatively scheduled for Monday. Today they injected some dye in there to make sure there are no other blockages and I haven’t heard the results of that yet but if all goes well we’ll be able to say good-bye to that damn ostomy bag next week which is sooner than we thought. Then he’ll need to heal completely before they replace his reservoir with a shunt that will carry his excess cerebral spinal fluid to his stomach. Poor Charlie had such a battery of tests and procedures over the past few days that he was exhausted and we weren’t able to have him outside of the isolette for too long but I did get an hour and a half of kangaroo care last night which was fantastic as always. I’m hoping for more late tonight if he’s up to it. Charlie also discovered his thumb for the first time which I captured on video (see below). It’s funny—the LAST thing I ever thought I’d do on this blog is post frequent videos of my baby boy but these are special circumstances especially with the current NICU quarantine that prohibits any visitors. Forgive me for all the baby images! At least Charlie won't suffer from second-child syndrome—the absence of any photos or videos of anyone other than the first-born.
The reality is that for now Charlie is my full-time job. The NICU is my place of employment. Like most work places where we spend so much of our lives, it’s hard not to get involved in the local drama. Instead of our usual topics of conversation, I spend a lot of my time blabbing to Kendall about the doctors, nurses, technicians, and the other families in the NICU, speculating on their lives, talking about what happened that day, gossiping about who gets on who’s nerves, what baby needs what procedure, and so on. We have a new preemie admission next to us and just hearing the parents’ terrified questions is like watching a video of us ten weeks ago. One of the hardest parts about being in a hospital every day is that you’re constantly surrounded by pain and sadness. Also moments of incredible joy. But many a day an elevator door opens filled with sobbing family members whose personal anguish is palpable. There was a time when I would wait for another elevator but now I just walk in respectfully and position my body in such a way to give them the privacy they need.
Before I head back to Cedars, let me share with you some brief images of Charlie Miller on his 74th day of life. Here he's being sung to by arguably the most beautiful actress in the history of motion pictures. And, by the way, this is really her voice, even though in the actual film the crazy decision was made to replace it with the voice of another singer. I like this version much better.
Danny,
Charlie is precious. Another award-worthy video. Forgive my ignorance, but what's the name of that song, and what film did it appear in?
Love,
Julie
Posted by: Julie R. | July 09, 2009 at 09:48 PM
Heaven... that video, that song, that thumb.
I'll be thinking of all of you on Monday.
So much love.
Posted by: sweetsalty kate | July 09, 2009 at 10:02 PM
I don't know why seeing Charlie suck his thumb made me cry, but it did. Maybe because it's a thing that awake babies do...they reach, they find, they remember...and Charlie's more & more awake recently.
Please don't apologize for pics and videos. I would have to bother you by email if they weren't on your blog. :-)
Much Love to You, Charlie & Kendall!
Posted by: Jane | July 09, 2009 at 10:06 PM
Danny, you always feature wonderful and appropriate music to accompany your endearing videos. I'm continuously moved by the images and the soundtrack of Charlie's life.
Posted by: Pearl | July 09, 2009 at 10:10 PM
Oh, good clever Charlie. Keep growing. You've got such a fan club waiting to see you on the outside.
Posted by: quinn cummings | July 09, 2009 at 10:53 PM
Danny--
I so wanted to see Charlie suck his thumb and hear the accompaniment. Unfortunately, Marilyn and I have not been able to download this video and the previous one with Frank Sinatra. Any suggestions?
Still looking forward to seeing you and Kendall, even if we can't get into the NICU. Please e-mail me & give me a day & time and we'll be there. I'll be happy to fill you in on what's going on in the rest of the world, but your world is much more important. Instead, I'll tell you about the movies I've seen lately.
Love to Kendall,
Cynthia
Posted by: Cynthia Reich | July 09, 2009 at 11:54 PM
To the poster who asked, the song is Can't Help Lovin' Dat Man from Show Boat by Jerome Kern/Oscar Hammerstein. Gardner appeared in a 1950s film version of this 1920s stage musical.
I hadn't heard Gardner sing this.
As for the rest of the world, you're not missing much: several celebrity deaths, more politician adultery, and hey, Sarah Palin resigned and is giving goofy periodic press conferences to the amusement of all.
Cute to see that Charlie has discovered his thumb. Good luck with the surgeries!
Posted by: Pam G | July 10, 2009 at 04:38 AM
Danny,
Try uploading your videos to http://vimeo.com. It works just like YouTube but you probably won't run into the copyright nonsense.
Oh yeah, and Charlie is looking really cute in those videos!
Jeff
Posted by: Jeff | July 10, 2009 at 04:47 AM
Thank you Danny for your continued stream of information and videos of your precious son and family. Another day begins with joy, tears and hope. Lots of love vibes sending your way...from Chicago and my family. xoxo cuz - E
Posted by: esther fox | July 10, 2009 at 06:01 AM
A lot of stress! I wish you calmer times soon!
Posted by: Rhea | July 10, 2009 at 06:04 AM
Thanks, all! And thanks for that Vimeo suggestion, Jeff, it seemed to work. Hope this shows up on everyone's computer. As Pam G. said, this is Ava Gardner's original version of "Can't Help Lovin' Dat Man" from the MGM's 1951 version of "Showboat." Lena Horne was bitterly disappointed not to get the part of "multi-racial" Julie LaVerne that was promised to her and which she was so well suited for but MGM was worried that their distributors in the South would freak out at the interracial love story. When they gave the part to Horne's good friend Ava Gardner, Lena helped her learn the song (very much in her own style) and it was recorded for the film. Then the stupid MGM executives thought they needed a more "professional" voice and had singer Annette Warren dub the vocal track. Gardner's original version was released a few years ago from the vaults.
Posted by: Danny | July 10, 2009 at 06:20 AM
my goodness Danny! I can't get over how much bigger he is! He looks great! I hope he continues to find his thumb as that is the best self soothing! I hope and pray that all continues to go well, Luv, Susie
Posted by: susie specter | July 10, 2009 at 07:47 AM
I couldn't see anything ...is it my Mac 0sx is only 10.3.9? I saw the Frank Sinatra video..but not this one...and i'm at my nyc connection via cable, not dial-up, Very frustrating but am happy to hear the comments on Charlie's growth and joyful thumb sucking. pu, pu , pu
Can't wait to see this...maybe in the public library, with earphones...they have new gates donated computers.
As someone who was hospitalized lots (but it was more toddler age) when your parents had strict visiting hours, i believe it's of utmost importance that you be there as much as you can. Makes me want to buy more lotto tickets just for you too. Hang in there. Our prayers continue.
Posted by: Judy | July 10, 2009 at 08:37 AM
Oh, that sweet little baby! Charlie's thumb-sucking must have just melted your heart (yet again)...it certainly melted mine! Thank you Danny for sharing your journey and your tiny little hero with all of us.
Posted by: Elise | July 10, 2009 at 08:49 AM
As always I wish you and your family the best. I really hope and pray that this is over and everything is good and normal for you very soon.
Posted by: Brett Hickman | July 10, 2009 at 08:52 AM
"But many a day an elevator door opens filled with sobbing family members whose personal anguish is palpable. There was a time when I would wait for another elevator but now I just walk in respectfully and position my body in such a way to give them the privacy they need."
That's beautiful.
Posted by: alec porter | July 10, 2009 at 09:35 AM
I'm hoping that your boy is out of the hospital in August. I'd love to see a change in career for you.
Posted by: churlita | July 10, 2009 at 11:07 AM
Danny, I echo others' comments on how much bigger Charlie looks, and how great the thumb-sucking is. Bully for him! The music is soooo lovely. Thanks for finding it and for sharing all.
Fake Grandma
Posted by: Elaine Soloway | July 10, 2009 at 12:21 PM
Hey, little cute Charlie!
Love, Hannah Freireich
Posted by: Julie Levin Freireich | July 10, 2009 at 04:49 PM
Danny:
The video is wonderful and so is Charlie.
He--and you and your family--are in my prayers.
God bless!
Mark
Posted by: Mark Daniels | July 10, 2009 at 05:19 PM
Danny & Kendall,
I love getting to know your son (and you better) through your creative, clever and heartfelt messages, videos and songs. I will see Jeff tomorrow night in Lowell, MA and I am eager to hear what he has to say about meeting
Charlie. MUCH LOVE TO ALL!
Posted by: Debbie Voll | July 10, 2009 at 07:58 PM
Oh my god
Posted by: Kristen Petersen | July 10, 2009 at 08:02 PM
Hi Danny and Kendall and Leah: I've been following Charlie's story and the story of you and your family on your blog. Your entries could form the basis of a memoir that might interest some major publisher. When and if you have time and inclination, prepare a proposal, sample chapter or two, and an outline. Submit through reputable agent. Marc
Posted by: Marc and Judy Davis | July 11, 2009 at 10:39 AM
The poignancy with that song is sharp. Man he's so cute.
Posted by: maggie may | July 11, 2009 at 07:25 PM
He's precious! Those cheeks and his chubby hands are wonderful to see. I love photos and videos of Charlie. You're generous to share with us. Thank you.
I'll keep a good thought for your work situation. Thoughts and prayers will be with Charlie on Monday.
Posted by: Chris | July 11, 2009 at 07:31 PM
Dear Danny,
You're really a prize, the way you care so much, and insist on being an integral part of Charlie's struggle, loving him and willing his success each baby step of the way.
What a better world this would be if all fathers cared even half as much as you do.
Gordon
Posted by: Gordon | July 12, 2009 at 12:57 PM
Oh, he gets so excited when he discovers his fingers and then his thumb! A sense of achievement and reward!
Posted by: amba | July 16, 2009 at 06:44 PM