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
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.)