As of today, our son Charlie has spent 100 days in the Cedars-Sinai Neonatal Intensive Care Unit. What an incredible, terrifying, wonderful journey it’s been. And it’s not over yet, of course. Charlie’s shunt surgery is tentatively scheduled for August 12, his original due date. It’s also my sister’s birthday. I remember hearing that date for the first time in the doctor’s office last December and immediately calling Sue to share the news that our twins were expected on her birthday. Oy, I thought, two more Leos in the family? If someone would have told me all that was in store for us, including the fact that we’d have a three-and-a-half-month-old son who would be getting his fourth major surgery on August 12, I never would have believed it.
I went to a parent meeting in the NICU last night and met the mother of the one baby who has been there longer than us. When he leaves in a few weeks, Charlie will be the King of the Hill. The roller coaster continues its glorious ups and adrenalin-producing downs. Monday was a horrible day all around. Charlie did not respond well to his cerebral spinal fluid taps and was fragile and miserable all day and night. Yesterday was much, much better. When I arrived at the NICU in the morning I found my son swinging in a Fisher-Price swing and having a grand old time. He’s now on six out of eight bottle feeds a day. He has miraculously transformed from his low weight of one pound four ounces to a whopping six pounds.
I’m grateful that I’ve written so often in this blog over the past fourteen weeks because I can scroll back and see how far Charlie has come. Here is a brief video retrospective of Charlie’s first hundred days. I never posted the earliest photos because I thought they would freak people out but now I think it’s inspiring to see where he began and where he is now.
As I’ve mentioned, there is no way to know the extent or specifics of what Charlie’s brain damage (the Level 3 and 4 intraventricular hemorrhages—IVHs—he had at birth) will mean for his future development. The effects could be moderate or they could be severe, only time will tell. Is it some form of denial that Kendall and I treat him exactly like a perfectly normal baby? I say no. We are living in the moment and responding as best we can to our beautiful, responsive, loving baby. No matter what his future holds, he is perfect to us exactly as he is.
As anxious as we are to leave the NICU, I also find I’m experiencing something that is probably not that uncommon among NICU parents: fear of going home and no longer getting 24-hour expert care. The other day I was joking that we should all live our lives in intensive care. It’s the perfect set-up: being attached to monitors around the clock that let you know of the slightest abnormality, having nurses tending to your every need, and knowing that any ache or pain will be addressed by a world-class expert within minutes. As grueling as the last 100 days have been, I know I’ll also miss the NICU community. I have never spent so much time in one place. I wake up every morning with purpose and direction and there is no question of what I’m doing that day or where I’m going. I now walk through the different bays of the NICU feeling like Norm in “Cheers”—at this point I know the names of virtually every person I see and greetings are exchanged all around. I also know many of the parents and can’t help but follow the progress of their babies. It is a family, and as much as I can’t wait to make that final trip out the front door with our son as I’ve seen so many parents do, it’s weird to think that the moment we step out of the NICU we are no longer allowed back in, those doors are sealed shut. Even if Charlie were to go back to the hospital the next day, God forbid, he’d be part of the pediatric program.
Whatever journey we have ahead, I know there will be other communities we become part of, other parents and professionals from whom we will gain so much expertise and experience. Our story was devastating to us, and we’re still recovering from the shock and the loss, but we also have so much to be grateful for. Charlie is amazing, I have never met anyone with such a will to live. I love him more every minute of every day.
Happy 100 Days, baby boy!
Wow - I am speechless - and crying
Posted by: Barbara | August 05, 2009 at 08:10 PM
Wow, I cannot believe that fat face. I am speechless. The good news is you will never again be alone in planning Charlie's care. The bad news is you will never again be alone in planning Charlie's care. I kid you not, one Christmahanukwanzakah Jordan got a gift from the lady who had adult therapy around the same time Jordan had her infant OT. We sat in the waiting room with her at 1pm every Tues and Thursday for one year, and she brought Jordan a little baby doll. The friends you'll make, the relationships you'll build, all over Charlie and Oliver, just like you have because of Leah. Your baby boy is beautiful, Danny. Keep writing and I'll keep weeping. Thanks for the updates.
Posted by: Erica M | August 05, 2009 at 08:13 PM
His progression is absolutely incredible to watch. I know some people do not photograph their babies in NICU because it is too upsetting. It makes me so happy to know that you have these records of his first 100 days.
Posted by: Annika | August 05, 2009 at 08:33 PM
How lucky Charlie is to have you for a dad and Kendall for a mom and how he will one day yell at you both for all these pictures taken of him as a baby. Some day in the not-too-distant future, you will all have a good laugh! Poo, poo, poo!
Love,
Marilyn
Posted by: Marilyn Molnar | August 05, 2009 at 08:44 PM
Gorgeous. One day at a time and there you are at day 100. And you know, a perfectly "normal" baby needs love, love, love and cuddling at this point in their life just as Charlie does - so no denial whatsover there on your part - just perfect parenting!
Posted by: K Wild | August 05, 2009 at 09:01 PM
What a gorgeous little video! I think Charlie was absolutely beautiful from day one... what a miraculous little fighter he is! =)
Posted by: Beth | August 05, 2009 at 09:25 PM
Danny,
What a milestone...and what a kid! It's amazing to watch his progression on the video. I feel privileged that you've shared the last 100 days with us in intimate detail.
Love,
Julie
Posted by: Julie R. | August 05, 2009 at 10:13 PM
Not sure if you've seen this, but I have a feeling you'll get a kick out of it.
Wierd Al does his White Stripes immitation on a song about Charles Nelson Reilly. So that's where Charlie gets his toughness!
http://sendables.jibjab.com/originals/weird_al_charles_nelson_reilly?cmpid=1183
Posted by: Ken Kinsley | August 05, 2009 at 10:20 PM
I am kvelling...pooh pooh pooh. He is so ridiculously cute. I love his chubby little cheeks. He has come so far and it is a joy to see. I know that he has many, many more beautiful days ahead. Keep up the good progress, little man!
Lots of love to you all - Julie
Posted by: Julie Schreiber | August 05, 2009 at 10:38 PM
Oh those cheeks!! Still praying!
Posted by: Heather P. | August 05, 2009 at 11:00 PM
What a beautiful baby boy. Cheers to 100 days, and many prayers for his upcoming VP shunt surgery.
Posted by: Dr. Judy | August 05, 2009 at 11:08 PM
Wonderful! Just wonderful to see charlie's incredible progress, thanks for sharing it with us!
Posted by: Reto Haupt | August 05, 2009 at 11:27 PM
Gorgeous video and congratulations on your beautiful chubby boy! My daughter was born 1 pound 6 oz and, as she celebrates her 8th birthday this month, it's so easy to forget those early days. Selfishly, I thank you for your video reminder of my own miracle girl; at the same time, I hope knowing about other micro preemies and their successful struggles gives you hope as you move through this journey. Good luck to Charlie and the rest of his family, and thank you for sharing your experience with a stranger.
Posted by: anita | August 05, 2009 at 11:27 PM
Wow! Charlie's come a long way! Look at those chubby cheeks :)
Thought you might be interested in reading this http://www.stuff.co.nz/entertainment/2712090/Neil-Finns-new-supergroup
Sorry I don't know how to make it a hyper link :)
Posted by: Sarah | August 06, 2009 at 12:18 AM
Yay Charlie! He is amazing, and so are you guys. What a stunning and unbelievable journey.
Posted by: Kitty | August 06, 2009 at 12:23 AM
Dear Charlie,
You've come a long way, baby !
Dear Danny,
Besides the best of the best of care provided by the NICU staff, I honestly think that a big part of why Charlie has done so well, and progressed so far so fast, is the boundless love that you and Kendall have shown him. Every kid should be so lucky...
Posted by: Gordon | August 06, 2009 at 01:47 AM
Happy 100 days Charlie sweetie. Thank you for sharing his beautiful video.
Six pounds. And he's been in the swing! So exciting. I don't think it's denial. I've done, and continue to do, the same.
It is so weird when you reach that 'Cheers' stage isn't it. Made me sad to leave the NICU in a weird way, yet the majority of me just wanted to hoof it on out of there at high speed and never come back.
Much love from one ex-King (well, ex-Queen) of the Hill of a NICU far, far away to the soon to be reigning champ of your NICU. Go Charlie!
Posted by: Catherine | August 06, 2009 at 02:35 AM
I have been following your blog as it was sent to me from a friend, probably 98 days ago.
I have never commented before, but your video was absolutely beautiful and brought tears to my eyes.
My two daughters, 6 and 8 watched it with me and were cooing over Charlie.
I had a stillbirth in spring 2007 and my younger daughter said, is that what our baby was like. I told her, this baby is most certainly going to live!!
Warmly,
Amanda, from Northampton, Mass
Posted by: Amanda | August 06, 2009 at 05:42 AM
Look at the cheeks in that picture! I want to reach out and pinch 'em.
The transformation over the last 100 days is incredible thanks for sharing that.
Posted by: Jeff | August 06, 2009 at 06:14 AM
What a touching video. Charlie's progress is amazing. Thanks for allowing us the opportunity to share your journey. Good luck next week. You'll remain in the thoughts of everyone here.
Posted by: Pam G | August 06, 2009 at 08:14 AM
Yes, the NICU is a cocoon - one that allows the parents to go home and possibly, maybe, sleep through the night. THEN you bring that baby home and suddenly you think "NURSE! WHERE IS THE NIGHT NURSE?!!"
=)
Congratulations, Charlie, on your 1st 100 days.
Posted by: Anna Marie | August 06, 2009 at 09:49 AM
Danny, my heartfelt love continues to go out to you and Kendall and your children, though we have never met. As to whether you wondered if you are in denial or not...fuhgedaboutit! Whatever future challenges Charlie may face in the future, or you and Kendall as his parents, they will only be lessened by expecting the most, accepting what it, and loving each other throughout.
There is an example that I don't mean to apply to Charlie but I think has broad ramificatons. I worked with several old women 40 years ago that had a day-care activity program for "students" who were, at the time, described as severely retarded people. They ranged from older teenagers to people in their forties. Their families would drop them off for the day. Some of the students had never learned to speak, use the toilet, or did things like let their tongue hang out or pull their dresses up, etc. These two little feisty women would nail the, saying things like "A lady doesn't do that!", etc. And they taught them the social skills that had kept them isolated, to a certain degree. others learned to talk, and how to express what they wanted. One young lady would have conversations, real give and take, after only a year of a lifetime of not speaking.
While I was amazed at what the women accomplished, they easily explained that many family members are so guilty that they accept the child as they grow up without an idea that they could learn.
In my gut I look at Charlie's awakening self and can't see anything wrong with him. What's normal anyway? He may have to work harder at some stuff before getting it, but even that is in doubt. Keep treating him like a normal baby because he is.
I came to your blog by way of Kendall's book, and am privileged to have been included in your experience. Again, all my love and support goes out to you.
Mary Shannon Baim
Crested Butte, CO
Posted by: Mary Shannon Baim | August 06, 2009 at 10:26 AM
I am delurking to say that video is amazing. To see how far he has come.. he is a true, true blessing. I feel love for him and he isn't even mine! Thinking warm thoughts for you and your family from Massachusetts.
Amy
Posted by: Amy | August 06, 2009 at 12:11 PM
6 pounds -- that's wonderful! Congratulations on all the milestones you've passed so far and the ones still to come. I can't imagine better parents for Charlie than you and Kendall.
Posted by: Richard Lawrence Cohen | August 06, 2009 at 12:11 PM
Happy 100 days, Charlie! What a fighter, and what incredible progress.
Posted by: churlita | August 06, 2009 at 12:46 PM
Ya gotta quit makin' my eyes go all swimmy, Danny! Kudos et bon courage!
Posted by: La Framéricaine | August 06, 2009 at 01:02 PM
Dear Danny, Kendall, Leah and Charlie,
I'm in AWWWWWWWWW. What a terrifing, beautiful and amazing journey each and everyone of you have been on. I'm so touched everytime I read this blog. Charlie, you have the most loving parents, family members,and friends all cheering for you. It's great to be SOOOOOOO loved. Danny, Kendall and Leah thanks for sharing with all of us.
Posted by: Patsy | August 06, 2009 at 01:17 PM
Oh, that video showing Charlie's progress was just extraordinary to watch! Thank you Danny for sharing Charlie with us. It is such a joy and relief to see how far he's come. I wish you and your family so much nachas from here on out!
Warmly,
Elise
Posted by: Elise | August 06, 2009 at 01:18 PM
So sweet, thank you for sharing that with us.
Grow big little man!
Kimberley
Posted by: Kimberley | August 06, 2009 at 02:42 PM
This is some of the most open, honest, writing I've ever seen. About one of the most difficult subjects imaginable.
Posted by: david | August 06, 2009 at 04:14 PM
This will be easy. Really. It will. All you do is bring an empty hockey bag when you leave, big enough for the smallest nurse. Voila!
My god, those cheeks. Those sleepy, post-meal eyes. And 'normal'... that's possibly the world's most laden and most empty word. You're treating that gorgeous boy just as you should. You're treating him just exactly like Charlie.
xo
Posted by: sweetsalty kate | August 06, 2009 at 04:30 PM
Congratulations! What a terrifying, miraculous, beautiful journey thus far. This arduous path has yet to give up all its secrets; still, the smell of blossoms along the way brings light to the shadows. Our hopes journey with you...
Posted by: jason | August 06, 2009 at 05:28 PM
He's so beautiful, sweet and precious! I can hardly take it. That was powerful to see how much progress he's made in 100 days.
The fear of leaving the NICU sounds reasonable to me. I can only try to imagine.
This is so captivating, the beautiful boy, and the depth of love he's creating in his parents and others. Happy 100 [and 1] days!
Posted by: Chris | August 06, 2009 at 06:32 PM
This post made my day. Go Charlie! xo
Posted by: Sarah | August 06, 2009 at 06:45 PM
He is so cute! I love all those hats. This is truly awesome - he's gonna be walking before you know it. :)
Posted by: Shannon | August 06, 2009 at 07:43 PM
Danny, what a beautiful post, as are all of them. Thank you for sharing your roller coaster! Please send yet another "Happy 100 Days!" to your precious Charlie, and to all of you. Six pounds! How wonderful.
Posted by: Adriana Bliss | August 07, 2009 at 12:54 AM
Oh, how wonderful to watch your baby's progress. I look forward to reading more and more about Charlie, the super baby. Thank you again and again for sharing your life with everyone.
Posted by: suzanne | August 07, 2009 at 08:20 AM
I cried when we left the NICU. You will, too - with gratitude. And then, you'll bring him back someday, and you'll cry again - with gratitude. I can't wait for that blog entry.
xoxo
Posted by: heather... | August 07, 2009 at 09:01 PM
Danny, a child's brain is a mysterious, elastic and sometimes wondrous thing. I know a girl who had a stroke right after she was born and lost the use of half of her brain. Eight years later, although she still has (and always will have) some challenges, she is doing great. If you met her, you would think of her as a "normal" kid. Charlie's future can't be foretold. Living in the moment is the only sane, sensible course of action.
Charlie's development will quite possibly be atypical, but that's not so important, as long as he's getting whatever help he needs. Obviously you and Kendall do provide that for him, and will continue to do so. Treat him like the normal kid he is! Every kid has his or her unique abilities and challenges, some more extreme than others. Charlie is taking you on a trip, an adventure, a long journey - buckle up :) Look at that sweet chubby face - who wouldn't follow him anywhere?
Posted by: Sheila | August 07, 2009 at 11:57 PM
Wow! Charlie is such a beautiful boy and his spirit truly comes through in your videos. I can't thank you enough for sharing your experience-it is touching on so many levels. I keep your family in my thoughts and prayers.
Posted by: mary | August 08, 2009 at 07:09 AM
Congratulations! I feel so grateful that you have let us experience the journey with you - it has been wonderful to watch his transformation into the beautiful chubby and alert little guy he has become. Here's to many many more hundreds of days!
Posted by: Sally | August 08, 2009 at 12:42 PM
What a fantastic journey dear little Charlie has taken and you all along with him. Beautiful Video Danny.....How WONDERFUL that you have been documenting every day of Charlie's journey and Charlie's progress...BRAVO, all around!
Posted by: OldOldLady Of The Hills | August 09, 2009 at 01:50 AM
I continue to return back to your blog every couple of weeks to see how things are going. You amaze me Mr. Danny Miller. Thank you for sharing such personal thoughts and experiences with the world. Your son is a very lucky child indeed to have such wonderful parents. Congratulations to you, your wife, your daughter, and, of course, your dear son for achieving this hard fought milestone. I wish you all the best on your amazing progress! Much love!
Posted by: Anonymous | August 09, 2009 at 04:46 AM
Congratulations on 100 days! I love Charlie to pieces and plan to come out to CA as soon as I can to meet him (oh yeah, and to see you and Kendall and Leah, too). And thanks for the video: more tears, of course.
Posted by: Emily Barton | August 09, 2009 at 06:26 PM
Charlie is so beautiful. I'm so glad he continues to progress and progress more.
Posted by: gorillabuns | August 10, 2009 at 07:38 AM
amazing!!!!
wishing you all continued LO-HE-HA.
jennifer
Posted by: jennifer | August 10, 2009 at 05:09 PM
Happy Hundred and Fifth, Charlie!
Hope you're having a good week.
xoxox
Lori
Posted by: Lori Kirkland Baker | August 10, 2009 at 11:31 PM
You, your wife and Charlie are amazing. I happened upon your blog recently and Charlie's story one of my favorite stories to follow now. He's absolutely beautiful and I love watching him grow. He'll be home before you know it - he's a fighter! As a mother to a preemie (who is healthy, happy and about to celebrate her 4th birthday) I am reliving the NICU days through you. One day soon enough NICU will be a thing of the past and you'll have your amazing son home with you jumping off furniture as if trying to give you a heart attack. :)
Posted by: Aggie | August 11, 2009 at 07:56 AM
Yay for 100! He's getting to be a tank with giant squishy cheeks! I have an 8 month old at home and am already missing those infant snuggles and eyes that only hold love for Mommy and Daddy. You can see that in Charlie's eyes - what a lucky little boy he is to have you, Kendall and Leah. Just you wait...before you know it, he won't have time to snuggle because there will be places to crawl to and toys to play with (but that's just another phase of glorious baby life)!
I hope the surgery went well and look forward to hearing about Charlie's next 100 days. He's utterly beautiful!
Posted by: Candi Ince | August 13, 2009 at 11:44 AM