Feeling less euphoric than last week. The NICU roller coaster continues but there’s always some good news to go along with the scary stuff. In addition to getting off CPAP and onto regular nasal cannulas, Charlie also had his feeding tube taken out of his mouth and put in his nose. This is good news on a few fronts including allowing us an unencumbered view of his adorable mouth for the first time since he was born 65 days ago and also making it easier for Charlie to breastfeed once a day. It's called “non-nutritive nursing” since his calories still come from his feeding tube but the experience is great for Charlie and Kendall and studies have shown that premature babies who do such nursing tend to do better than babies who don't. Kendall and I are both able to hold him during his time out of the incubator. Today we had him out for nearly three hours and he did very well, only bradying once or twice when I accidentally squished him.
I’m so impressionable when it comes to medical symptoms that I sometimes stop friends dead in their tracks when they start describing what ails them because I immediately start to feel every ache and pain. Maybe I’m like Deanna Troi, the empathic counselor from “Star Trek: The Next Generation” (God, I’m such a geek!) who could feel everyone’s emotions, often to her own detriment. Or maybe I’m just a textbook hypochondriac. In any event, I’ve been experiencing many of Charlie’s symptoms. I tend to hold my breath whenever he does and can only exhale when his heart rate comes back up. I wouldn’t be surprised to find my own oxygen levels desatting along with his, and like Charlie, I feel like I’ve tripled my weight during the last nine weeks. Good news for him, not so much for me as I waddle into Cedars every day. Sitting next to his isolette does not exactly promote an active lifestyle, nor does the hospital cafeteria offer the most nutritious fare. I’ll need to work on that as we continue to settle into our routines. Someone needs to publish a book called “Fitness for NICU Parents.” Maybe we can do isometric exercises with oxygen tanks or the head ultrasound machines. I suppose I could take some walks around the hospital. Maybe even start walking up the stairs to the NICU.
Several days ago there was a lot of hubbub around a new admission directly across from Charlie. It got so bad that they put up screens, which catapulted me back, like a war veteran having a PTSD flashback, to the frantic attempts to save Oliver on April 27th. I heard the nurse call the parents of this baby and her tone of voice broke my heart and made me wince in memory. The social worker asked all of us to leave the bay, never a good sign. The next day there was a new baby in this location, a big fat boy who seems to be doing fine. Privacy is strictly observed in the NICU, the doctors and nurses will never answer questions about other babies so you quickly learn not to ask, but I found out today in passing that this baby did not make it. Oh, how I feel for those parents I never saw. How I relate to their terrible task in filling out their baby’s posthumous birth certificate, a state requirement, with the date of death mirroring the date of birth. Tragedy is never far away in the NICU, but it’s not a daily occurrence, thank God. Usually we’re all just trying to hold onto our seats as we experience the exciting ups and the terrifying downs of that oft-mentioned roller coaster.
Charlie lost a little weight yesterday but is still at 3 lbs. 8 oz. When he reaches two kilos, (4.4 lbs.) he will be able to have the surgery to reconnect his intestines. I dread surgeries but I’m looking forward to saying good-bye to his ostomy bag which keeps falling off causing his pesto-colored poop to leak everywhere. Charlie’s eyes were dilated today (which is why they look a little odd in the video below) for his second eye exam but some emergency kept the eye doctor from making her rounds so he'll have to be dilated again tomorrow. Two weeks ago, at 32 weeks, his eyes looked like they were developing properly and I pray that tomorrow’s test will show that the growth is normal for 34 weeks which he reached today. We also have our weekly doctor’s meeting tomorrow where we will discuss what’s happening with his reservoir and shunt. And we're finally getting the autopsy results for our son Oliver. Sigh.
Following my last post about our fun week with my visiting family and Wilco, I received the following comment from our friend Marilyn Molnar:
Hi Danny and Kendall. I know it's “mishpucha” and they seemed to impress Charlie who is looking better by the ounce and every day, but try to slip in a little Sinatra on a CD and see how Charlie relates to something mellow; no offense to your brother-in-law who I really enjoyed, but Frank is sooo soothing.
Marilyn is a fanatic of Ol’ Blue Eyes. I’ve
never been with her for more than a few minutes before she invokes his name.
And she was right. I hadn’t sung any Sinatra to my son and it was time.
The next morning I started crooning my limited repertoire of songs from the man
once known as “The Voice.” I started with “My Way” which I found too depressing
so I quickly moved to songs I’ve heard him sing such as “The Lady Is a Tramp,”
“Night and Day,” and “My Funny Valentine.” (But what popular song from the 20th century didn’t Sinatra sing?)
My mom was obsessed with Sinatra during his young years when he was a skinny little pisher who made millions of bobbysoxers scream as hysterically as any groupie of the Beatles ever did. My mother was on the young side of the bobbysoxers and soon switched her allegiances to heartthrob Larry Parks. Larry’s wife, Betty Garrett, a family friend of ours as I’ve mentioned, played Sinatra’s girlfriend in two classic MGM musicals, “On the Town” and “Take Me Out to the Ballgame.” And one of Kendall’s mother’s closest friends, the still gorgeous Barbara Rush, played Sinatra’s main squeeze in two other films, “Come Blow Your Horn” and “Robin and the Seven Hoods.” This was a bit later in his career when he was fattening up and transforming from teen idol to mega-superstar. Both of these gals had nothing but praise for Frank and are in touch with his family to this day. I’m sorry I never got to see him perform live before he died at Cedars-Sinai Hospital in 1998, just a few floors up from where Charlie currently resides.
Today I sang one of the Sinatra songs that’s on my iPod to Charlie during kangaroo care, actually a Stevie Wonder hit that Frank recorded in 1969. I found these lyrics particularly appropriate.
Marilyn, this is for you…
Danny,
Awww, he does have a cute little mouth! How great that Kendall is able to nurse. Thanks for another great video.
Love,
Julie
Posted by: Julie R. | July 01, 2009 at 10:27 PM
I found your blog quite randomly, but as a mother of two boys your beautifully written stories of Oliver and Charlie quickly drew me in, and I just wanted to send my anonymous stranger blessings and hope your way. May your beautiful Charlie soon be nursing to beat the band.
Posted by: Decca | July 01, 2009 at 10:49 PM
Dear Danny,
I see Marilyn hasn't read this blog yet. She will absolutely plotz when she does. I thought I remembered that Kendall was pumping. I'm so happy that she is soon going to be able to feed her baby. Looking forward to seeing the three of you soon.
Love,
Cynthia
Posted by: Cynthia Reich | July 01, 2009 at 11:10 PM
Aww! He looks happy to have the feeding tube out of his mouth and is enjoying the freedom of his lips and tongue. Very sweet. His little fingers are so precious. I'm glad to see his sister and grandma are able to touch him now.
Keep on growing, little one.
xoxoxoxox
Posted by: Lori Kirkland Baker | July 01, 2009 at 11:51 PM
It was heartwarming to see Charlie free from the feeding tube in his sweet little mouth. He is looking stronger with each passing day. You have all been in my thoughts these past months. Though I haven't commented lately, I have read each entry and looked at each video and prayed each day for the day you take sweet Charlie home with you and all of this is just a memory.
Love, Judy
Posted by: Judy Grossman | July 02, 2009 at 12:24 AM
Baby boy looks like he wants to break out of NICU and go home! :-)
So, he has two surgeries on the horizon?
I'm so glad Kendall gets to breast feed now. She must be so sore....but what a bonding experience.
Posted by: Jane | July 02, 2009 at 12:37 AM
He is precious! It looked like he had the hint of a smile on his face in a few places during the video. I will be thinking about you and Kendall and Charlie today and hoping that the meeting with the doctor goes well. Thanks for keeping us updated, we check your blog each day with hopes of more good news.
Posted by: Sally | July 02, 2009 at 05:03 AM
omg he is so cute! Wonderful to see him without tube and with Leah and Grandmother.
Missed seeing him the last couple days so thanks for posting again.
Posted by: Margie | July 02, 2009 at 07:00 AM
Thanks for another great video. Good to see Leah and Grandma able to interactive more closely with Charlie. And great that Kendall can nurse. Perfect song choice, too. Those smaller videos actually run more smoothly on my crappy home office DSL so no worries there!
Best wishes for more good news.
Posted by: Pam G | July 02, 2009 at 07:54 AM
Oh gosh he's such a cutie. I just love him!
Posted by: Maria Sosa | July 02, 2009 at 08:06 AM
It may be postage-sized, but this video made me cry! (well, okay, so did some of the others...) He looks like such a mensch now! That mouth! Those fingers! Those chubby cheeks I just want to pinch (oy, I sound like somebody's bubbie!)Keep up the good work Charlie!
Posted by: Barbara | July 02, 2009 at 08:17 AM
I'm so glad you can finally see Charlies whole beautiful face now. It's always so beautiful to see how much love you all give him everyday.
Posted by: churlita | July 02, 2009 at 10:28 AM
For some reason I can't see the video, but from reading these posts it sounds like Charlie is adorable! So glad to hear his tube is out. I'm sure he is loving Frank Sinatra....who doesn't! My cousin is the doctor who signed Franks DC back in 98.
Posted by: Arlene Silverman Andresen | July 02, 2009 at 12:23 PM
Love the shot of brother and sister. Very touching. Charlie seems to understand he'll be the subject of many photo and video sessions to come. Oh well, bring it on, he says.
Love and prayers to all..
Fake Grandma
Posted by: Elaine Soloway | July 02, 2009 at 01:58 PM
Damn it Danny, you made me cry again ..... what an extreme honor to have you dedicate Frank's song which was sung to Charlie. My name and Frank's in the same sentence, oy, I'm plotzing, but the most important name in this cast is Charlie, who is looking (and listening) better every day. Hope to see you three soon.
Thanks again for the honor.
Love,
Marilyn
Posted by: Marilyn Molnar | July 02, 2009 at 03:24 PM
I had to laugh about the NICU Fitness... I remember plodding along the hallway (not NICU, thankfully) when I was in labor with my first child, saline drip on a mobile cart trailing me, trying to get things moving. There will be time for fitness later, running after a toddler, God willing. Hang in there.
Posted by: K Wild | July 02, 2009 at 07:13 PM
I just loved seeing Charlie's busy little mouth, precious tiny hand, and his sweet chubby cheeks! What a doll! I keep sending him wishes for good health, and I so admire your strength and devotion! I will rejoice for you and your family on the day, G-d willing, that you are able to take your beautiful baby boy home where he can be snuggled up with love (and music!) from his adoring family!
Posted by: Elise | July 02, 2009 at 10:09 PM
Hey Danny,
How about adding "High Hopes" to the iPod and singing it to Charlie?
We'll be in LA in about two weeks. Hope to see you then.
Hi to Kendall.
-John
Posted by: John J. | July 02, 2009 at 10:19 PM
How about "The Best is Yet to Come" for little Charlie? Hang in there, Danny and Kendall.
Posted by: Anne | July 03, 2009 at 04:25 AM
Dear Danny,
Charlie is looking better and better. Even though it seems to be two steps forward/one step back, he's still making constant progress.
Dig up some of Frankie's earliest stuff. That golden voice and what he could do with a song !
Don't wait until you're 300 pounds. Pick up some healthy food (even if it's just a Subway sandwich) on your way to the hospital. And, walk, walk, walk. Don't stroll. Always walk like you're in a hurry to get there. Otherwise, Charlie will be visiting you in the ICU.
Friendly advice...
Posted by: Gordon | July 03, 2009 at 06:43 PM
Dear Danny,
It is great to see Charlie growing stronger. I will continue to follow your posts...Hope you continue to have "ups" on the roller coaster.
Posted by: Carla F. | July 03, 2009 at 09:19 PM
Dear dm,
Just remember that rubber tree plant.
Here's to high hopes.
I look forward to exploring many musical themes through Charlie's long and happy life
(yes, I am spitting-Baruch Hashem.)
Love,
hp
Posted by: hp | July 04, 2009 at 07:14 AM
I can hardly believe it, i was able to play the whole video with my crappy country dial-up & I loved it...the perfect song...was he holding hands with his big sister or mom or grandma at the end? pu pu pu
wondrous boy, what are you thinking?
i send all of you love, and prayers for continued strength, and health.
judy
Posted by: Judy | July 04, 2009 at 08:01 PM
Don't you wish you could give Charlie a fat transplant? : ) I know all about NICU and post-partum weight gain due to stress and lack of exercise.
This a time when every emotion is exposed and nerves get rubbed raw. No, you'll never be quite the same, but you will find a comfortable place emotionally eventually, and you'll have more compassion for others suffering than you ever did before.
Posted by: V-Grrrl at Compost Studios | July 05, 2009 at 08:42 AM
Dear Danny -
I first started reading your blog when I was looking up a film reference. Now I'm worried every day you don't post! There's one of those Solomon interviews in the NYTimes with your brother in law today - I was annoyed the interviewer didn't ask about Charlie! The interview was charming nonetheless.
Judy
Posted by: Judy Brodhead | July 05, 2009 at 10:56 AM
Your posts are, as always, so charming and hopeful. It occurred to me today (I'm kind of slow like that)that Charlie should still be in his mother's tummy.
He is amazing and really looks like a beautiful baby. The world is now filled with his fans.
He will never be lonely thanks to you opening up and sharing your story with the world.
I hope you are well in this week of many passings, someday you will write of them, I hope.
Posted by: suzanne | July 05, 2009 at 04:03 PM
As a NICU nurse, I feel compelled to tell you that we ride that roller coaster with you through the ups and downs of all of our babies. Each death hits us hard. Each success strengthens our resolve to work where we do. Just know that even though we may be laughing at times that you may not think it appropriate, our hearts are breaking with each and every family when things go wrong. Sometimes we just do what we can to get through it. May Charlie continue to have more ups than downs.
Posted by: Patty | July 06, 2009 at 02:33 AM
I absolutely relate to the hypochondria...I have that physical empathy to a ridiculous degree as well. I love that Charlie can start nursing once a day- the chemical reactions a baby might have to that are not all known, but what is known is so positive.
Posted by: maggie may | July 06, 2009 at 10:33 PM
Best wishes to baby Charlie: Here in the mountains of Southeastern KY we do not say Jew Eat Yet. We say "Gee et yit" all in one word.
Etta Mullins
from the beautiful mountains of Whitley County, KY right on the Tennessee line.
Posted by: Etta Mullins | September 18, 2009 at 06:04 AM
From the moment the first Mercedes-Benz CLS four-door "coupe" was introduced to the public, other German luxury automakers hit the drafting board. According to the German auto experts at AutoBild, Audi is just over a year away from unleashing its own cleverly packaged sedan.
carwadontester981
Posted by: jelpalils | January 31, 2010 at 02:24 PM