Charlie Turns Three!

I can never sleep the night before Charlie’s birthday. I go to bed feeling carefree and happy and wake up in the middle of the night, as I’ve done again, in a fit of weird dreams and anxiety. Oh, Charlie’s birthday itself will be fun, we’ve already started celebrating, but I seem to have some kind of permanent cell memory about that terrifying day exactly three years ago when Kendall woke me at 4:30 am when she was only 24 weeks pregnant, complaining of weird pains. The pains were getting stronger and stronger so we jumped in the car and headed to Cedars, convinced we’d be home by 9 am. We weren’t. After trying all sorts of extreme measures to stop the labor, they wheeled her away and performed an emergency C-section. I’ve written about that day several times so I won’t go into detail again, but the memory of that trauma is still there, as much as I’d like Charlie’s birthday to only be about joy at his arrival.

Charlie’s whole life is about joy but I just can’t pretend his birth day was anything but terrifying. I also can’t not think of his twin brother Oliver on this day and what it felt like to stand there and watch the two teams of doctors and nurses working simultaneously on our sons. Charlie’s team looked serious and busy while Oliver’s team seemed increasingly worried and desperate, constantly calling in other people to take a look and try something new. But despite all their noble efforts, Oliver died 12 hours later. I will never forget how his seemingly weightless one-pound body felt in my arms. I can see the incredibly compassionate NICU nurses taking his body and gently pressing his tiny feet onto an inkpad and cutting wisps of his blonde hair for his memory box.

And then there was Charlie—fighting to survive at just over a pound with severely underdeveloped lungs and his eyes still fused shut. The sterile confines of the Cedars-Sinai NICU would be Charlie's only home for the next five months, through his Level 3 and 4 intraventricular hemorrhages (IVH) or “brain bleeds,” his necrotizing enterocolitis (NEC) which caused him to have a colostomy bag for several months, the constant manual tapping of his built-up cerebrospinal fluid as a result of the brain bleeds until the placement of his ventriculoperitoneal shunt that he still has and which is still presumably draining the fluid into his peritoneal cavity.

I mention these medical terms, not just because they’re forever seared into my brain, but because I want parents in a similar situation who are desperately Googling these words to find this post. I want them to find it because I want them to see how great Charlie is doing three years later, knowing how I constantly searched online for stories other babies with the same problems to see what happened to them in the years that followed—desperate for anything that would give us hope, especially with all the dire predictions and prognoses we were hearing daily. And there IS hope—tons of it! Charlie is such a miracle. In his most recent evaluations at the Regional Center which has been providing excellent services for the past three years, they looked at the physical delays he is still experiencing and said that compared to other children his age he’s significantly behind but making a lot of progress. But cognitively? After reading his medical history, the therapists were flabbergasted at Charlie’s verbal skills and his cognitive abilities and pronounced him at the 99th percentile (it can’t get any better than that!). Again, when I remember all the scary predictions and fears that he may never even talk, I want every parent of an extremely premature baby to know that while each situation is completely different, there is every reason to be optimistic about the future.

We'll go back to the NICU later this morning as we've done every year on Charlie's birthday so I can deliver the cake I made for the staff there who saved his life over and over again during those 136 days and cared for him so beautifully. How can our gratitude for something like that ever go away? 

Here is a video I made when Charlie reached the 100-day mark in the NICU. It includes images of him from the very beginning. Some of those early images may be scary to some people but hey, it is what it is!

 

And here Charlie is now—the most loving, fun, bright, sweet boy on the face of the earth, very excited about his all-chocolate third birthday as he plays with an antique egg beater we have in our kitchen!

 

Happy Birthday, Charlie! We love you so much!

Comments

[Pam G]

Charlie's spirit for life inspires everyone. Happy birthday!

[V-Grrrl @ Compost Studios]

It's like Post Traumatic Stress Syndrome, isn't it?

I remember reading what you were going through and praying for you and your family and imagining how overwhelming all the ups and downs and uncertainty were for all of you. I was glad you "wrote" your way through it, and it's been a thrill to witness Charlie's happy post-NICU life. He's bright and adorable and your joy is palpable.

[Reb]

what a beautiful post and inspiration for all parents. Happy Birthday Charlie!

[Jane]

Happy birthday to my favorite baby boy in the whole world!

Danny, deepest thanks to you and Kendall for sharing the story of pregnancy, trauma, grief . . . for sharing yourselves so intimately and letting us get to know you, Oliver and Charlie. I think I will always feel attached to Charlie's life, even from a distance, and I look forward to rooting for him through the years, from kindergarten to bar mitzvah and beyond.

[Kitty]

Happy Birthday, Charlie! And congratulations on picking the perfect family to be born into... you couldn't have better people to help you through. SO happy to see how well he's overcome so many early obstacles, and looking forward to see how he grows and what his future accomplishments will be!

[Pam P.]

Was sorely in need of a Charlie update! Great post, as always tears and joy mixed up like... like... like with an old fashioned egg beater!

[The McCombs Family]

Happy Birthday Charlie! The world is a better place because you are here.

We love you.

[gorillabuns]

Happy Birthday, Charlie! and love and blessings to Oliver as well.

[betty Fox]

Bye Charlie, bye,,,go and have the greatest day of your life. Those films are the history of a miracle. They are proof of the miracle of life itself; The miracle of survival; The miracle of love, Charlie got the perfect parents to live out his personal history.

[Kirk]

Happy birthday, Charlie!

[Anne]

Happy Birthday, Charlie! Three is a fun year!

[Peggy Shecket]

LOVE Charlie and the eggbeater! Happy Birthday, dear Charlie! You have a fan club of people applauding all your impressive milestones.

[The Pliers]

I got here late to the party, but I too remember from afar the hell you all, you and the doctors and nurses, went through and I get teary-eyed just reading about the long way that you have come.

I did all that Googling for a grown man surviving a Widow Maker heart attack and an LRP for his cancerous prostate and I too was looking for a sliver of hope.

Charlie's life and verbal precocity is proof that you found it and my husband up there in the attic installing a floor is proof that I found it, too.

Many happy returns of the day to all of us, Danny, and all those parents that you are attempting to coax out of terror and into some semblance of optimism and hope.

Amitiés,

[Laurie J]

Happy Birthday Charlie! I can't believe I have only seen you once in your three years. I will have to remedy that soon. Much love to you and the whole family.

[Shari]

Smiling and crying, crying and smiling. What a gift to all of us, to see him growing and developing so beautifully. I miss you all and my heart goes out to all the NICU parents who find this message of hope.

[KWild]

Happy Birthday, Charlie! So happy to see that things are going so well. I echo all the beautiful comments above, and man-o-man, what a gorgeous smile you have. It totally melts me.

[Jen H.]

Happy Birthday Charlie. You're a special boy with a very special family!

[Kate]

How do you handle the cuteness? Seems like it would be just overwhelming at times.

[Sally]

Hi Danny,
Charlie looks wonderful! I know this day will always be bittersweet for you, but hopefully over time more sweet than bitter. Here's to many, many, many more birthdays to celebrate!

[Barbara]

I'm a little late, but HAPPY, HAPPY BIRTHDAY TO CHARLIE!!!
What a wonderful post, Danny. I can't believe it's been 3 years. That last video made my day!

[Neil]

Inspirational, of course, and so joyful.

[Pearl]

I'm sorry it's belated birthday wishes I'm sending him, but I'm throwing in a virtual birthday hug for free.
To a sweet, sweet little boy who brings such pleasure to his family and to those people around him; to a boy who had a rough start in life, but has been paving the way for many many beautiful tomorrows: Happy 3rd Birthday, Charlie. Hope you got all the chocolate presents you wanted!

[Susan]

Joyous Post-birthday wishes, Charlie. I, too, love these updates and find great joy in seeing such a happy child.

[Lenka of The Frozen Midwest]

Danny, I've been reading your delightful blog for years now - I just wanted to say that after following your heartfelt posts of Charlie's travails and progress over the past three years, how remarkable and wondrous it is to see his happy, healthy, smiling face in that video. Miracles do happen. Happy birthday, Charlie! :)

[Sheila Linderman]

Love him so much!

[Kitty Shelley]

A very belated happy birthday to Charlie!

[Heather]

I can't believe he is three. It makes me so happy to see him grow, but I feel the pain for you that will always be there. It's unfair to have the happy mixed with the sad. I think about you all often, especially Oliver. Happy very belated birthday to Charlie, and to you and Kendall, you all have lived so much these last three years. xoxoxo

[Sheila Linderman]

Not having a great day today, so I re-watched the video of Charlie. I'm good to go for at least a week! BTW, does he like chocolate?

[Marilyn Molnar]

A very belated Happy Birthday, Charlie, and many, many more to celebrate with your wonderful mommy and daddy.

[Lori Kirkland Baker]

Oh, I can't get over what an adorable, sweet boy he is! Very belated happy birthday, Charlie!