Mortality /Weighs heavily on me like unwilling sleep.
- John Keats
There’s a name for it. A nickname if you will. Deemed thusly so by the wise, world-weary souls who have chosen as their life’s work to care for premature, critically ill babies.
They call it the honeymoon period.
It’s just like what it sounds like -- a time of indeterminate length when all is going well, when outlooks are rosy, when optimism abounds as one watches the health and the process of a micro-preemie. Which is what Will was.
And he had a lovely honeymoon period. Nines on his APGAR scores. (Educational Minute: The Apgar test is the very first test given to a baby, in the delivery room, right after he is born. The test was designed to quickly evaluate a newborn's physical condition after delivery and to determine any immediate need for extra medical or emergency care. APGAR: Activity, Pulse, Grimace, Appearance, and Respiration. The scale is from 1-10, with 10 being the highest. Rumor has it that only doctors’ children receive 10s.)
His heart valve closed appropriately, his jaundice dissipated. Things seemed to be going very well.
I was still in the hospital, feeling ok, but under close watch more for stress than anything. I watched football from my hospital bed, cheering as loudly as one can do in such an environment for my Gators (who beat Georgia) and my Bucs (who beat Minnesota). My husband rarely left my side, sleeping on an army-issue cot that provided nothing in the way of comfort. We had just come back to the room after a quick little Sunday night visit with Will when the phone rang. It was Will’s night nurse. And there was a problem.
Some pulmonary bleeding had made its presence known. Indicating the very real possibility of a bigger problem. In the brain.
Back we went, unsure of what we would be told. And after a brief consultation with the very young, exceedingly laid-back-to-a-fault on-call resident, we still had more questions than answers. All he could, or would tell us is that “the problem is very concerning.”
What the fuck does that mean, Dr. Dude?
“Very concerning.” That’s some real technical mumbo-jumbo there, fella.
Once Dr. Dude left, the nurse explained to us that this sort of thing -- some apparent brain hemorrhaging and bleeding -- was not uncommon in micro-preemies, and that tests would be run in the morning to determine exactly what was going on.
I was released from the hospital the next day, still wearing my maternity clothes, still questioning everything.
I began to develop the routine that would dominate my life for the next three months.
Wake up. Check the clock. Wait until 7:01 to call the hospital, the earliest possible moment after shift change from night to day staff. Find out how Will’s night was. Inquire when rounds were being held (no visitors, including parents, were allowed in the NICU until rounds were complete). Busy self with mindless activities. Try to figure out how to use the electric breast pump machine. Shower, drive to hospital. Spend time with Will. Chat with nurses, respiratory technicians, other parents. Talk to doctors, physicians' assistants and specialists. Fruitlessly resist urge to cry too much. Work hard to focus and process what was said about Will and his treatment. Leave before shift change (again, no visitors allowed). Go home. Remember to eat something. Stare at the TV. Do battle again with the breast pump machine. Call the hospital before going to bed. Try to sleep. Wake up to go to the bathroom and call the hospital again. Try to sleep again. Wake up. Repeat.
As the week progressed, Will began to ride the Preemie Express Rollercoaster, with good stability one day and problems the next. Tests were administered -- many CT scans -- to see what was happening in that noggin of his. Chest x-rays showed some issues with his little lungs. Infections began to pop up spontaneously.
The honeymoon was over.
After several days of tests and observations, the doctors called us in for a meeting. Will had indeed suffered a brain bleed, and a pretty severe one at that. He had the beginnings of chronic fluid build up in the brain and subsequent seizure activity and tendencies. And there was no way to tell what affect or turns this would have in the immediate and in the long term.
I wish I could tell you exactly what my reaction was, but exhaustion and sheer emotional numbness masked whatever it may have been. Not such a bad thing in hindsight.
We heard all the rhetoric, delivered in a very well-meaning fashion. I don’t want to downplay that. But to the doctors, caring as they were, Will was one of many patients. To me, he was the most important person in that room. And this horrible thing was happening to him. And that was inexcusable and incomprehensible in my eyes. My heart still aches with the memory.
Up and down, up and down we went over the next week and a half. Good days, tough days, oxygen problems, infections, electrolyte issues, cloudy chest x-rays. Stable. Not stable. Seizures, duress, agitation, irritation.
And all I could do was watch him through the Plexiglas of his isolet.
My dearest friend, my college roommate and not-blood-but-should-be sister came to visit from Atlanta for two days during all this, just to hold my hand. Such a welcome respite from the insanity.
She had just left for the airport when the phone rang. Will’s nurse. We were needed for a meeting with his neonatologist. Immediately. That’s never good. And it wasn’t. At all.
To this day, I cannot talk about this moment with any clarity or objectivity. Here are the words I wrote, miraculously, in an e-mail that afternoon.
Sun, 11 Nov 2001
This is a hard one to write, so bear with us. Will seems to be taking a southward turn again. More problems with his oxygen. The doctor suspects that some of this problematic activity may be attributable to seizures caused by his brain hemorrhage. They have been giving him a sedative/anti-convulsant, which settled him down initially, but they have had to continually increase the dosage. He is now having obvious seizure activity.
They will watch him over the next few days to see if his condition gets better, but if it doesn't, his doctors frankly told us that they may be running out of medical options for treatment.
Please continue in prayer for Will's head and healing.
It is only now, with time and some scar tissue that I can actually acknowledge what happened that day.
Will was in danger of dying.
The world turned black.
And part of me withered away.
Mon, 12 Nov 2001
Will had a decent day today. No seizures last night or today but he had one this evening while his night nurse was giving him his hands-on checkup treatment. Any sort of contact -- even having his diaper changed -- seems to agitate him. They are trying different anti-convulsant medications to see if something will work better for him. Good news on other fronts (he's gained weight--now 860 grams), but his head and his seizures are the obvious main concerns right now. They (and we) will keep watching him and see how he does.
Please pray for his head, and that he can rest peacefully and comfortably.
I remember nothing. I remember everything.
I felt nothing. I felt everything.
Out of control. Beyond my control. No control.
Tue, 13 Nov 2001
Today brought more of the same, I'm afraid. They are giving Will lots of medication for his seizures but he's still having them occasionally. He had a bit of a calm period while we visited him today, which was good to see. A neurologist is visiting him twice a day now and following his condition.
Please keep praying for peace and comfort for him. These are very tough days for us -- almost numbing in their intensity -- and it helps tremendously to know that there are so many who continue to talk to God on Will's behalf.
Breathe. Breathe. Breathe. One foot in front of the other. Words forming. Senses moving. Function. Function. What is normal? Will normal ever come this way again? Will I recognize it if if does?
Wed, 14 Nov 2001
Will had a good day today (and needless to say, so did his parents). His nurses said he was doing better all-around than yesterday. No obvious seizures detected today and his breathing looks better than we've seen it in weeks. Right now he's getting an electroencephalogram (EEG) over a 24-hour period to monitor his brainwaves and seizure activity, so hopefully we'll learn more about how his head is doing. He's back on breast milk so hopefully that will help him with weight gain, as well as build up his immune system to fight any infections. He also has graduated to a larger-size diaper -- it's these kinds of things that make a mother proud!
Finally. Exhale. Deep. Primal. Mournful. Relief. Temporary. Momentary. Real.
The rollercoaster was moving up the track, slowly, very slowly. But it was moving. Not stalled. Not stagnant.
There is so much more to be said about this. I’ve not allowed myself to process anything. Until now. I just couldn’t. Even now, seeing the words I wrote seem like they were composed by someone else.
But as I hear Will in the other room, singing along with The Wiggles and happily playing with his cars, I think that permission can finally be granted to my tortured soul. Can I let go of this melange of twisted emotion that I’ve been clinging to? I hope so.
I hate it.
It hates me.
Guess what? Here's that damn AHA! moment people are always talking about. Clarity via that virtual lightbulb going off.
I survived this horrific episode. Every parent's nightmare. Mortality up close. And way too fucking personal.
I am leaving the door open, so some solace can approach, creeping in quietly. Perhaps catharsis will follow suit, and with it, perhaps some self-forgiveness. Who knows.
It's all I can do to just open the door and wait.
I’m still a little dizzy from the rollercoaster ride.
This is the spot where I am mortal.
- Johann Christoph Friedrich von Schiller