As of last Thursday there’s a semi-quarantine in the NICU. Because of a spate of respiratory illnesses sweeping through hospitals in southern California, visitors are no longer allowed in the NICU, not even grandparents or siblings. Only parents. Yesterday Charlie had his first session with the occupational therapist and a nice stretch of kangaroo care, and he remained stable and content throughout. He occasionally bradied and desatted but always self-resolved. Then, just before the evening change of shift, Charlie’s heart rate plummeted without warning. I had taken Leah swimming in the afternoon and just as I walked back into the NICU I saw nurses, doctors, and respiratory therapists surrounding his incubator while his frightened mom watched helplessly. Charlie started turning that awful shade of blue as they bagged him, and Kendall and I stood there, blood draining from our faces as we stared at the numbers on the monitor and the medical team that was working on our son. He did come back up, thank God, with little explanation for the episode. They ordered blood work on him but he had no infection and his blood gases looked fine.
This morning I arrived just after the neurosurgeons did another tap of the cerebral spinal fluid (CSF) in his brain reservoir. They’re now doing daily taps and getting more and more each time which concerns me. We have a meeting scheduled with the neuro team later this week. Charlie continued to brady and desat from time to time but always brought himself back and when he came out of the incubator for the session with the therapist he was alert and fine.
During our last doctor’s meeting, I asked if Charlie could possibly be going home some time close to his due date (August 12) which is the general estimate they give you at the beginning. “No way,” the neonatologist said, surprising us with her definitive answer instead of the usual “we can never predict.” She explained that with two surgeries coming up that he’s not yet ready for and some other big hurdles he has to pass, he just won’t be ready to go in six weeks. My guess is that he’ll come home some time in September but I’m just making that up. It would sure make a nice birthday present. But he’s gaining weight which is great news. Last night he broke the four pound barrier and I nearly did a jig when I saw the number on the scale. I remember how it took weeks and weeks for him to reach a measly two pounds.
Last week we got Oliver’s autopsy results from the senior pathologist. That was a sad meeting and took me right back to that horrible day ten weeks ago today. There remains no explanation for Kendall’s early labor. She had no hidden infection or any of the other typical causes. The “good” news as far as Charlie is concerned is that Oliver was perfectly formed, there was no genetic disease or abnormality, everything was great with him. Except one little thing—for some unknown reason, he lost some blood in utero that started a tragic chain of events leading to his birth and subsequent death. The pathologist’s report goes into explicit detail on every organ, most of which were fine and healthy. It reminded me of the time when my mother was dying of lung cancer. She had about a week or two to live and was being examined by her doctor. “Judy, except for your lung cancer,” he said, “you’re in great physical shape.” Huh?
I have been having many PTSD-like flashbacks of that traumatic time 70 days ago, especially holding Oliver as he died. It may sound morbid to say, but I wish I could do it over. I was so traumatized by everything that had happened that at the time part of me just wanted it all to end. I am grateful that we got to spend those final moments with our son but I just want a few more hours holding him and really looking at him now that I’m so much more present and don’t have huge amounts of adrenalin coursing through my system.
With every day that passes I feel like we are grieving Oliver anew. The more we get to know the unique quirks of Charlie’s wonderful personality, the more profound the loss is that we did not get to know Oliver’s. I was reading the blog of a woman whose young daughter died just before our twins were born. Her beautiful little girl was 17 months old. Some idiot commented that “at least she wasn’t older,” implying that it would have been more difficult for this woman and her husband to lose an older child. I don’t think there was any malice intended in the comment, just a shocking amount of stupidity and insensitivity. By that score, I guess we shouldn’t be grieving Oliver at all. And yet his absence is always there, palpable and huge. But how grateful we are for Charlie. After last night’s scary incident and an anxious day today, I just got home from two delicious hours of late night kangaroo care in which Charlie did not brady or desat once. What a gift. He was so sweet the whole time, looking up at me, moving his little arms and legs against my body, grabbing some of the hairs on my chest with his little hands. Kendall and I both drink in his smell like it’s the greatest elixir in the world, even though it’s largely the result of various hospital accoutrements.
We talk to Charlie about his brother and feel so sad that he won’t have him as a companion on the physical plane. I also feel sad for Leah. She was there with us the day that Oliver and Charlie were born and she asked to see Oliver. At the time the doctors were furiously working on him and it was just too much. As a last resort, they were planning to make a cut in his neck and insert a line into his jugular. I told Leah it would be better to wait. A few hours later when we got the call that Oliver’s heart rate was nearly gone, Leah had gone home with her mom. I so regret that she never got to see her other brother.
One of Leah’s favorite songs is “Left Behind” from the musical “Spring Awakening.” The lyrics are sad but beautiful.
All things he ever wished are left behind
All the things his mama did to make him mind
And how his dad had hoped he’d grow.
All things he ever lived are left behind
All the fears that ever flickered through his mind
All the sadness that he’d come to own.
A shadow passed, a shadow passed
Yearning, yearning
For the fool it called a home.
And it whistles through the ghosts still left behind
It whistles through the ghosts still left behind
Whistles through the ghosts still left behind.
Sigh. Part of me wants to promise that tomorrow I’ll write a “happy” post but I know I can’t necessarily follow through on that. All I know is that today I feel compelled to remember Oliver. Here is a compilation of images that we’ve been seeing every day for past ten weeks, all from the place where our beloved son was born and died.
This one is for Oliver Miller with his big sister Leah singing her favorite song in his honor. (If it doesn't show up below, you can see it here.)
Don't think I didn't have her back as well as yours. No one knows one's sorrow as another that has lost a child. And even then, it's your personal journey in which no one can ever begin to understand.
Posted by: gorillabuns | July 07, 2009 at 12:03 AM
Dear Danny,
I can appreciate your deep desire to relive, calmly, something that you were forced to endure on adrenaline.
You and your family have my own profound condolences in the loss of Oliver. I agree that it is a private journey that you are on as an individual and as the member of a loving family. I'll be out here, along with all your other friends, family, and well wishers, keeping up with you as a witness while you stand your vigil and make your way forward.
Amitiés,
Posted by: La Framéricaine | July 07, 2009 at 01:46 AM
What a wonderful tribute from Leah to her brother Oliver. I hope Charlie has a good week.
You are all in my thoughts as usual.
Posted by: Pam G | July 07, 2009 at 04:16 AM
A beautiful and haunting melody. Similar to your feelings of Oliver's passing.
Simcha and sorrow -- unfortunately often in the same breath.
Stay strong...and the same goes for Charlie!
Posted by: Pearl | July 07, 2009 at 05:45 AM
Lovely Leah..
Prayers of remembrance to Oliver.
Prayers for recovery and health for Charlie.
Love to all...
Fake Grandma
Posted by: Elaine Soloway | July 07, 2009 at 06:49 AM
I'm always so overwhelmed reading you.. it brings me back so abruptly I can hear the beeps. And my mind's a jumble and my heart's all squishy and I can't find words other than to tell you I'm still here, and Charlie is beautiful, and I hope he makes you yeowl like every good boy should when he gets a good fistful of you.
And I'm thinking of Oliver and all the unanswerable questions... and saying bah humbug to happy posts. All you need to be here is exactly where you are.
Posted by: sweetsalty kate | July 07, 2009 at 07:13 AM
This is really strange: I've suffered PTSD since Jordan's injury on a regular, without fail schedule for 14 years. Reading your posts about Charlie and Oliver take me tearfully back to my own PICU memories, but your beautiful words and all your hope and mourning are washing away my negative memories more and more. I wish your family more blessings than you ever thought possible, and I thank you for the tremendous blessings you give me with every visit to your blog.
Posted by: Erica Mullenix | July 07, 2009 at 08:00 AM
Danny,
With every post you remind me what an amazing dad, husband, person, friend, and writer you are. That video--wow. Thank you for a peek into your world.
Thinking of you, Kendall, Charlie, Leah, and Oliver with love,
Julie
Posted by: Julie R. | July 07, 2009 at 08:23 AM
I'm sorry this has been such a painful process for you and your family. I'm sending as much love and hope through the internets as I can. Please write what you need to write and don't worry if it's not a "happy" post. Use your blog however you need it.
Posted by: churlita | July 07, 2009 at 08:52 AM
What a lovely song and tribute to Oliver - Leah has a beautiful singing voice. I love Charlie's hat - he looks beyond adorable in it! So glad to hear he has broken the 4 lb barrier, you can see it in those delicious chubby cheeks. I will be thinking of you, Kendall, Charlie and Leah and hoping this week is a better one for all of you.
Posted by: Sally | July 07, 2009 at 08:53 AM
I know how horrible those kinds of flashbacks are. I hope you are squeezing in even some teeny tiny time for yourself in all of this, so when Charlie does come home, his Dad will be healthy too. I find that for panic/anxiety/constant stress, there is nothing like exercise and yoga. It settles the body. I am keeping Charlie in my heart.
Posted by: maggie may | July 07, 2009 at 10:42 AM
Dear Danny,
Wow ! That girl can sing !
I'm sending a spell for our Charlie's continued progress toward perfect health.
Don't forget to take care of Danny.
Don't forget to take care of Kendall.
Don't forget to take care of Leah.
Keep your sunny side up.
Posted by: Gordon | July 07, 2009 at 11:10 AM
Danny,
You are a mensch beyond compare. Your love and kindness just oozes out to your beautiful family. I am lucky to know you and call you "my friend".
Love always,
Marilyn
Posted by: Marilyn Molnar | July 07, 2009 at 11:33 AM
You, Kendall, Leah, Charlie and Oliver are in my prayers every night. The loss of a child is a wound that never heals. When Charlie is old enough to understand you can tell him of his own special angel, Oliver who will be with him every day.
I pray for G-d to bring you & yours comfort during this stressful time.
Posted by: Heather P. | July 07, 2009 at 04:31 PM
Amazing - Leah's voice, the whole video. So glad to see Charlie looking well.
How can they predict what will or won't happen in 6 weeks? That seems like such a long time away...but maybe they are just wanting Charlie to be as big and strong as possible before doing surgery and being ready to go out into the world.
Much love to all of you.
Posted by: Shari | July 07, 2009 at 04:38 PM
Danny,
I came into this in the middle, but went back and read all the posts. You're there every day and see each change as incremental, which can seem very slow. When I look at the photos of Charlie, I don't see anything but a normal, thriving baby. He looks good, Danny, he looks really good.
Posted by: Jane | July 07, 2009 at 05:18 PM
I want you to know I think about you, Oliver, Kendall, Charlie and Leah every day. No post is too hard, no thought too dark. Honor each moment, each breath, each thought and feeling. All of them.
Posted by: Leightongirl | July 07, 2009 at 06:12 PM
Charlie looks great to me, too, but I can't imagine what it must be like on the scary days. Hang in there and take care of yourselves. I hope there is a turn and your son comes home sooner than you think.
Posted by: Shannon | July 07, 2009 at 08:39 PM
I wish I could lift all this sorrow from your heart. Charlie looks great and I know he is a source of great joy. May you shepe naches from both your beautiful children.
Posted by: Helena | July 07, 2009 at 10:04 PM
What a lovely gift from Leah.
Posted by: kris | July 08, 2009 at 09:04 PM
What can be said? There is probably nothing more heart-breaking than being introduced to your child, then immediately being parted forever.
There's a story in the Tribune this morning about a 6-year-old boy who was the darling of his neighborhood, who died of a brain stem tumor. His older sister was sad that he wasn't going to make it to Christmas. So on July 2, the neighbors came to the house in the middle of the night and festooned the front yard with white lights. When the kid woke up that morning -- one of his last -- the family celebrated its last Christmas together. He died July 4.
The family's neighbors brought much love into the house of the grieving family. Nothing can ever make up for such a loss -- not even all the love that blossoms as a result. But that love is still a small miracle of its own. You see in the photo that the family is smiling, and that their eyes are still swollen from the crying.
http://www.chicagotribune.com/news/local/chi-boy-cancer-battle-09-jul09,0,1709913.story
Posted by: david | July 09, 2009 at 08:28 AM
The video is so touching and Leah's singing is so beautiful it makes me cry.
Charlie is amazing.
Posted by: Campbell | July 09, 2009 at 12:05 PM
Praying for Charlie, for Oliver, for you all. Thank you for continuing to share this experience, it leaves me speechless.
With love,
Felicia
Posted by: Felicia Park-Rogers | July 09, 2009 at 02:36 PM
Crying for the boy you lost and the one you long to bring home and the lovely daughter at home.
Posted by: V-Grrrl at Compost Studios | July 09, 2009 at 07:24 PM
My heart breaks with you. I understand your desire to relive your last moments with Oliver. It is not morbid. I relive the last moments I spent holding my little brother in the hospital over and over again in my mind and I wish I could go back to that night and really feel it and take it all in: the smell of him, the feel of his hand, everything. I was too numb at the time to be able to take it all in. I wish you and your family all the best. Charlie is beautiful and a fighter. I hope he recovers from his surgeries quickly and will make it home by September.
Your writing is beautiful as are your sentiments within.
Posted by: Sandi | July 11, 2009 at 06:38 PM
Leah is beautiful and she did a wonderful job singing. I'm sorry she wasn't able to spend time with Oliver and I'm sorry for the continued grief you all are experiencing. It moved me to read that you talk to Charlie about his brother.
I have three sons [11, 9, and 3]. We say prayers every evening as a family before bed. My son Duke [9] never forgets Charlie. Not written pridefully, just wanted you to know a little boy in Utah is particularly touched by you and your family.
Blessings, Chris
Posted by: Chris | July 11, 2009 at 07:24 PM