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…