I wanted you to see these photos I took today of our son’s beautiful hands. I’m fascinated by all the amazing details you can see in his tiny, tiny appendages. This post won’t be long—we just got home from the hospital for the first time and are ready to collapse as some of the adrenalin of this awful week begins to subside. We are grieving our son Oliver something fierce but through all the horror there have been moments of joy. We are getting to know Charlie and his unique personality which is already so evident despite his being a virtual prisoner of his incubator womb. He cannot cry since he’s intubated, he cannot be touched very much yet, and he can’t even open his eyes since they are still fused.
We now begin to figure out our new life at the Cedars-Sinai Neonatal Intensive Care Unit. Charlie will be there for months and we hope to watch him develop into a big fat baby we can take home. Everyone there tells us to expect setbacks but we’ve been blessed with some pretty decent news during his first four days of life. He did have an alarming weight loss two days ago from his birth weight of 1 lb. 10 oz. to 1 lb. 4 oz. but all babies lose weight during their first week and today he gained an ounce so he’s back on the upswing, I hope. A small hole in his heart (PDA) was successfully closed through medication. They initially found some blood in his brain and it’s still there but hasn’t grown over the past few days so we hope it will be reabsorbed. They tell us his eyes will most likely unfuse on their own when they’re ready. Everything they’re doing to him and the dozens of other babies in the NICU is simply miraculous, the level of care and expertise involved is beyond anything I ever could have imagined. Of course a week ago I thought any baby under five pounds was a goner. Who knew? What an education we’ve already gotten after just a few days. Kendall is lying in bed next to me furiously writing away. My wife is a fantastic writer as any of you who’ve read her book know, but for the past few nights she’s been on fire, writing nonstop in the voice of Charlie as some kind of film noir hero. It is funny, amazing, heartbreaking stuff that she is channeling through her tears and it’s allowing her to write about topics that she couldn’t bear to broach any other way, like how Charlie feels about losing his big brother. I think it’s the best writing she’s ever done and I’m stunned at how it’s pouring out of her fully formed in a voice that is nothing like her own.
I am stunned at the outpouring of support we’ve received from so many people including the readers of this blog and I thank you so much for your concern and for your positive thoughts. I am terribly grateful for every single comment and healing vibe sent Charlie’s way and will eventually respond to people individually. I think of how many times I narcissistically moaned about the number of comments I usually receive on my blog posts and how I couldn’t get 100 comments if my life depended on it. And now I’d give anything to not have had a reason to receive over 100 comments on my last post but I’m so moved and appreciative that I did.
I’ll keep writing about Charlie and all the other crazy topics I love on this blog but I’m planning to start a new blog specifically about Charlie’s adventures in the NICU as a way to update family and friends on his condition. I’ll give the URL to that site very soon. Those will be shorter, daily posts and I hope to also include some of Kendall’s film noir tales of our still-cooking son.
Thank you all for your thoughts and prayers. They mean so, so much to us.
I am so sorry for your loss. My heart and prayers go out to you and your family.
Posted by: mary | May 02, 2009 at 04:22 AM
Thanks for the update. You've all been in my thoughts throughout the week. My 81-year-old mother reminded me yesterday that she was a premature baby in an improvised incubator way back in 1928 and is still with us today.
May you find strength in the support each of us has for you. How wonderful and healthy that Kendall is able to channel her thoughts into writing. Isn't that what all of we writers do, or should do?
All the best,
Posted by: Pam G | May 02, 2009 at 04:27 AM
Oh, hello there Charlie. Well done on that PDA, wee boy.
Danny, it's wonderful to hear that Kendall is writing. And wonderful too that you're as invested in it as she is.
It's not an easy thing to find beauty and peace in the NICU with a camera. You've done it. What a gift.
Posted by: sweetsalty kate | May 02, 2009 at 04:57 AM
Thank you so much for the update, Danny. I know your lives are overflowing at the moment. I'm thrilled to hear Charlie is doing well. That's excellent! Hopefully that's an indication of the journey ahead.
And the photos are superb! Reminds me of a line from my favorite e.e. cummings poem: "nobody, not even the rain, has such small hands"... Somehow that entire work seems to fit.
My best to your entire family! Lots of good vibes coming your way.
Posted by: jason | May 02, 2009 at 05:08 AM
Danny -- found you through Neil. We were in similar shoes 11 years ago, and this weekend, she is flying across a zip line at a weekend camp with friends. Wishing you, Kendall and Charlie safe passage even as my heart breaks for you over the loss of your son, Oliver.
Posted by: dawn | May 02, 2009 at 08:04 AM
Dear Danny and Kendall,
Welcome, welcome to Charlie. Thank you so much for sharing pictures of him.
I am constantly holding you all in my thoughts.
Tamar
Posted by: tamarika | May 02, 2009 at 11:49 AM
Beautiful. Just beautiful.
Posted by: Roberta Lipp | May 02, 2009 at 12:42 PM
What beautiful little hands! Thank you so much for the update-- I've been wondering how you and your family are.
xx,
Sarah
Posted by: Sarah | May 02, 2009 at 01:05 PM
I'm knitting a pair of tiny booties right now! Charlie is an inspiration!
Posted by: Ellen Bloom | May 02, 2009 at 01:08 PM
Those hands are utterly beautiful.
Sending love and peace to you all from my side of the pond
Posted by: siobhan | May 02, 2009 at 01:26 PM
Continued blessings and love. Thanks for the update. I look forward to the other blog so we can cheer Charlie (and all of you) on...along with you.
Posted by: Wanda | May 02, 2009 at 01:36 PM
Danny and Kendall,
Our thoughts and prayers are with you [and Charlie] in this uncertain time.
Maggie and Dave
Posted by: Maggie Anton | May 02, 2009 at 03:26 PM
Danny and Kendall,
Thanks for the update. Your sweet little Charlie has strong hands. He is going to be a fighter and you will be squeezing his chubby little cheeks before you know it!
I think that its great that you and Kendall can express yourself through your writing. I know it's going to help you both get through this senitive time. I will keep sending good, caring thoughts your way! Be well....
Posted by: Arlene Silverman Andresen | May 02, 2009 at 03:41 PM
I love that you're giving Charles the middle name, Oliver. I agree with your view that Oliver helped Charles to survive, so what a lovely tribute. Good luck to all of you on this adventure.
Cleo
(from Chicago, Mather HS)
Posted by: Cleo Gascoyne | May 02, 2009 at 04:11 PM
What a dramatic entry into the world! We'll be sending all our thoughts your way for speedy weight-gain and quick discharge. Thank you for the update!
Posted by: Jen | May 02, 2009 at 04:33 PM
Hang in there guys. What a roller coaster week it's been I"m sure. Wow. Thanks for writing and keeping us posted. Much love to all.
patrick
--Amazing pictures too!
Posted by: Patrick Monaghan | May 02, 2009 at 07:11 PM
Wishing you all continued strength to get through the upcoming weeks. "Yashar yashar kadimah" (which loosely translated from the Hebrew means "onwards and forwards").
Thank you for posting those amazing photos... miracles at work.
Posted by: Pearl | May 02, 2009 at 07:13 PM
My dear friends, I have thought about you constantly for the last several days. I'm glad for the update and the photos. I can't wait to read future updates and Kendall's writing. Lots of love to your family from mine.
Love,
Julie R.
Posted by: Julie R. | May 02, 2009 at 07:55 PM
Dear Danny and Kendall and Charlie,
You have there with me constantly the last few days. I sent over a special prayer that I have been saying for Charlie that touched my heart. I am so glad that the writing is helping with your healing. What a blessing. What beautiful hands Charlie has. Thank you so much for sharing.
I love you.
Posted by: Laurie | May 02, 2009 at 08:30 PM
Thank you so much for sharing the details of both your loss and the miracles that you are experiencing. Usually it is one or the other, not both juxtaposed moment by moment. It brought tears to my eyes and has filled my heart with life force.
Best wishes to your family.
Posted by: Michael | May 02, 2009 at 08:33 PM
Thanks for letting us all know how you and the beautiful baby are doing. Best thoughts to all of you; pulling for you!!!
Posted by: Kitty | May 02, 2009 at 10:12 PM
Danny and Kendall,
I hope you felt the love and support and concern of a very large gathering in Chicago today. Though we were all sad to not have you there, you were on the minds and in the thoughts of everyone all day long. We wanted to grieve with you and celebrate with you and we look forward to seeing you and meeting Charlie. Get rest and stay strong!
Posted by: Mark Greenberg | May 02, 2009 at 11:10 PM
The eloquence of those hands is almost matched by yours, surely by Kendall's. I admit I've been haunting this blog, holding my breath. Thank you for bravely opening this journey to us and blessing us with the chance to contribute our love and "rooting."
Posted by: amba | May 03, 2009 at 01:05 AM
Here by way of Neilochka, and many prayers and blessings to you and your family.
When the NICU RNs tell you there will be ups and downs they mean it quite earnestly, so please continue to get rest and eat and take care of one another. Sounds very simple, but can be so hard in the midst of an ICU experience. Much love to you all, and no need to respond individually. Take care of your family--I'm certain that's what everyone here would say to you.
Posted by: AnnieH | May 03, 2009 at 06:50 AM
What beautiful, strong hands. We've been thinking about all of you all week, and send our love and prayers again.
Posted by: Barbara | May 03, 2009 at 07:52 AM
Danny,
I don't know you at all, but I found your blog randomly over a year ago and read it all the time. I am so sorry for your loss and my heart is with you and your family. I'm sure that although you don't always get 100 comments, there are hundreds of other hearts with you and your family. Please keep us all updated, and I wish you the best.
Posted by: Jessica | May 03, 2009 at 09:44 AM
Dearest Danny, Thank you for posting the photos of those perfect little hands. Please let me know when you establish the Charlie specific blog. You all continue in our constant thoughts. Judy
Posted by: Judy Sanford | May 03, 2009 at 10:07 AM
Great photos. Take care you all and good luck.
All my love and good health for Charlie at the speed of light.
ludmila
Posted by: Ludmila Gregori | May 03, 2009 at 11:43 AM
We continue to pray for your family. The saints who I call on today are St. John of God [patron saint of heart patients] to intercede that the PDA stays closed and the heart grows strong. Also, praying to the Woman with the Hemorrhage [my personal patron who I called on when one daughter had severe brain bleed], that she will touch the hem of the garment of the Great Physician for your little Charlie. Also: asking the Holy Spirit, the ultimate Breath of Life, to breathe into your little fellow's lungs all goodness and healing for a long, healthy life. I hope you don't mind the decidedly Catholic side of the aisle praying the way we pray for you and yours. Abba/Father is the Author of all life and it is He who we adore.
Posted by: Ruth Anne | May 03, 2009 at 12:48 PM
I have been thinking and worrying and praying for Charlie and for you and Kendall. Living in the NICU is an experience that you will never forget. The ups and the downs are often and sometimes so scary that you can't even begin to believe you can suvive them, but you do.
I was just about to send that package and realized that you were not going, so now it's sitting on my dining room sideboard waiting for further instructions. Take your time. Spencer must have been inundated. And you have way more on your plate than thinking about being a go-between.
When you decide Charlie's hebrew name, can you please post it. I know you won't follow the covenent for months and months, but some of us would like to add him to our misheberach list.
Posted by: margalit | May 03, 2009 at 04:12 PM
Oh Danny... I logged into my reader to see your take on the bar mitzvah this weekend and am so saddened to see what has happened.
Refuah shlema to Charles, may he grow strong and healthy. I hope that you are showered in blessings even during this time of great grief.
My heart goes out to you, Kendall and Leah.
Posted by: Leah | May 03, 2009 at 05:44 PM
A surgeon, a Rubenstein or maybe a Pearlman—who knows the wonders yet to come.
Wishing you, Kendall and Charles all the love in the world.
Posted by: Helena, John and Bammie | May 03, 2009 at 05:44 PM
oh how I wish that this wasn't my first time commenting here. My heart breaks for you and your wife. Deep and sincere condolences.
Posted by: Michellew_ | May 03, 2009 at 06:09 PM
Again, congratulations on the births of your sons. I'm sure Charlie will treasure his name, you two made a great decision there.
His hands are beautiful. I see so much strength in them already. When mine was in the NICU, I remember thinking how remarkable it was that I was able to watch her grow and develop.
My family is here for yours.
Posted by: heather... | May 03, 2009 at 06:22 PM
Sigh. Cry. Smile. Etc. These are the biggies that keep things in focus. .Wishing the best for Charlie, Kendall, you, leah, and everybody. The Charlie blog is a great idea. As one tragiblogger to another, I can't tell you how valuable it is for you and everyone else to put those moments and thoughts into words. Sending love your way and help where you need it. PH
Posted by: Peter H | May 03, 2009 at 06:32 PM
Danny, Kendell, Leah, Charlie:
Words can't express the feeling that a perent should every have to bury a child. My prayers are with you all for Charlie, may you all be there to see him wed !
Sam
Posted by: Sam Wengroff | May 03, 2009 at 06:44 PM
Danny- words cannot express how saddened i am that you have had to go through this experience. Loss and gain- all wrapped up together- must be so bittersweet... i can't imagine. Yet, the strength of love is unmeasureable.
I'm praying for you all- until August and then some. Thank you for sharing your story and for the pictures of Charile's hands. I wish he were still shrouded in the mystery of your beautiful wife's womb, but it seems G*d had other plans.
My heart goes out to you for the loss of Oliver.
Posted by: karen | May 03, 2009 at 06:53 PM
Oh Thank God...Rock on Charlie!!!!
Posted by: Ana | May 03, 2009 at 07:47 PM
Beautiful photos, Danny. Thanks for the update, and I'll keep on looking for more. I have thought about you, Kendall, and Charlie many times this past week.
Posted by: Elisabeth | May 04, 2009 at 04:24 AM
I love those photos, yet the Martha Stewart or scientist in me would love to see a 6in ruler nearby so one can see how small those strong hands really are. I've been thinking of you and your family constantly. Keep strong, get enough rest, and good food. Prayers for you and your family continue.
Posted by: Judy | May 04, 2009 at 06:52 AM
Looking forward to watching Leah's very little brother grow up to be a big, strong guy!
Posted by: Melinda | May 04, 2009 at 07:15 AM
Danny:
I'm so sad to hear about your loss. Wishing you all the best during these upcoming weeks.
Lo-He-Ha,
Jennifer (from Burr Oaks)
Posted by: Jennifer | May 04, 2009 at 07:52 AM
I'm glad to hear that things are going better with Charlie. I'm also so happy that you and Kendall both have a creative outlet to help you process all of this. Those little hands are amazing, just like Charlie.
Posted by: churlita | May 04, 2009 at 11:06 AM
Those are AMAZING Pictures Danny....And to see how really tiny he was...My, My, My....
May Charles keep getting stronger and stronger with each passing hour....I send Blessings and much love to you all...!
I cannot wait to read these new writings of Kendall's...It sounds like her Heart and Mind were 'cracked open' by this incredibly sad experience....I send all good thoughts both of you, and to your little one.
((((((((HUGS))))))))
Posted by: OldOldLady Of The Hills | May 04, 2009 at 11:17 AM
I'm sorry about the loss of Oliver. My heart aches for you. My daughter has been home from the NICU for 1 month. I know firsthand what you are going thru. NICUs are the most impressive places. Good luck to you and your family!
Posted by: Amanda | May 04, 2009 at 11:52 AM
Thanks for the update. Charlie's hands are so precious. And really, in spite of the tiny size, they've got some heft to them. As Barbara said above, strong hands.
Remember when Carmen was born? What she endured in ICU pales in comparison to what Charlie will have to go through. But I remember that she was intubated for a while too and she couldn't cry...but you just knew that she was going to unload full throttle just as soon as she was able...and boy did she.
The interesting thing about babies that spend a lot of time in ICU is that they have a hard time sleeping in the really quiet environments that we tend to make for babies. Apparently they didn't know this when Carmen was born...was confirmed by later research. So now I understand why Carmen liked punk rock when she was a baby. If Charlie has trouble sleeping and all else fails, you might want to try the Ramones.
Posted by: Maria Sosa | May 04, 2009 at 12:20 PM
Danny~
I just want to express how sad I am to learn about Oliver.
You are ALL in my thoughts and prayers~ for a healthy journey for Charles.
Love and blessings,
sandy
Posted by: sandy martin | May 04, 2009 at 05:10 PM
we are so sorry to hear about your lost (just red it now in Vancouver) and are deeply praying for Charly to become a healthy strong boy. We wish Kendall and you lots of strenght to overcome this hard time and may happiness and joy accompane you further.
Posted by: Danya and David (Switzerland) | May 04, 2009 at 08:34 PM
Oh Danny. Just checked in to this CRAZY news... it's funny, whenever a celebrity passes I always visit your blog because you always have such great tributes to people. But to come here and see this... it's not a tribute to some celebrity, it's you. I am so sorry.
Please take care of yourself, and those old-man hands will certainly find themselves really old, someday.
Posted by: Shannon | May 04, 2009 at 09:11 PM
Thank you for posting those pictures. Those are the hands of an angel. Sally and I are still sending lots of positive thoughts to your family.
Posted by: Jeff | May 05, 2009 at 05:32 AM
Such powerful pictures. He looks like a fighter! I am praying for you and your family Danny.
Posted by: Tricia Hicks | May 05, 2009 at 10:53 AM
Danny,
Thank you for this! Please keep us posted!
OH! SO SO happy to hear Kendall is writing! What an inspiration! Godspeed to HER dear hands!
Love to you both and blessings to Charlie,
Karen
Posted by: Karen | May 05, 2009 at 01:05 PM
Thanks for the update, Danny, and the photos that give us a glimpse of your son.
My son was a NICU baby too, born at 32 weeks. At the time, the hospital had a policy that allowed mother's to stay in the hospital with their preemies after they were medically discharged as long as there was a bed that could be spared. This allowed me to visit my son day and night and pump breast milk for his feeding tube until he was big enough to nurse.
He's now almost 14, weighs 150 pounds. I tell him, "I remember you when you were not much bigger than a large potato."
Take care of yourselves, as Annie H recommended. Life in the NICU is a rollercoaster ride and it's hard on body and spirit.
Blessings to you and yours.
V-Grrrl
Posted by: Compost Studios | May 05, 2009 at 04:56 PM
I hope the days and nights are getting easier for you and yours. and although I can't imagine how that happens, I know that it does.
much love
Posted by: jodi | May 05, 2009 at 09:01 PM
Hello Danny,
I just came back from serving a couple of month in the (swiss)army without any internet and the news about Oliver and Charles came as a shock to me. All my prayers and thoughts are with you, Kendall and Charlie. All the best.
Posted by: Reto | May 05, 2009 at 11:42 PM
I am at a loss for words, very surprised at the news, I stopped by to see if the Dom DeLuise obituary post was up already.
Sending prayers and healing vibes your way, Danny and Kendall and baby Charlie.
Posted by: Nat | May 06, 2009 at 05:08 AM
was so very saddened by the news of oliver, sending my thoughts and prayers and hoping Charles Oliver Thomas keeps growing and getting healthier every day and will constantly be the source of inspiration and strength to you, Kendall, Leah and his brother. Thanks for sharing during these trying,difficult times
debbie rose galo
Posted by: Debbie Rose Galo | May 06, 2009 at 09:22 AM
Thank you for keeping us all up to date Danny. And thank you for sharing those amazing photos. I keep you and Kendall and your entire family in my prayers.
Posted by: Dave | May 07, 2009 at 12:59 AM
Danny,
Did you know that my fat little grandson started out in the NICU? I'm praying Charlie will flourish just like him.
Thank you for sharing the updates. All of your friends and fans are eager to look over your shoulder as you visit Charlie.
Do know that Oliver continues in my prayers, too. His blessed memory.
Love,
Elaine
Posted by: Elaine Soloway | May 07, 2009 at 05:44 AM
Neil sent me here...
My son was born at 31 weeks, 2 lbs., 7 oz., which seems huge now compared to your little guy. But I understand that part of where you are right now. It's a long haul, and it will be exhausting and thrilling and wonderful and awful all at the same time.
Things have come a long way, and it looks like Charlie is a fighter. In a year or two you'll never believe that his life started this way.
I'll keep my prayers with you and your family.
Posted by: Finn | May 07, 2009 at 10:19 AM
Beautiful : )
Posted by: Kären | May 08, 2009 at 06:23 AM
Dear Charlie,
This is my first email to you and I want to say welcome and I can't wait to hold one of those beautiful hands. I send your mother and father much love too. Know that I am thinking of you so often and send all the strength I can muster.
xoxoxoxo Susan B
Posted by: Susan Buckley | May 12, 2009 at 08:26 PM