Hindsight: Micro

When Weston was alive, there was no time to think. I lived day by day, minute by minute, consumed with being the best possible mother to my two children living in different places and staying informed and educated about Weston's medical conditions. There was no time to ask, "Why our family? Why Weston?"

Since Weston died, all I have done is think (until I got to Connecticut, that is; now I am doing a really good job of not thinking at all, aka suppressing my emotions). I keep thinking, talking, and blogging about how shocked we were that Weston died so quickly. On the other hand, I have also credited mother's intuition with grabbing Weston's hats when leaving for the hospital the morning he died, as if I knew what was coming. I thought that he was doing well, defying the odds. Now, with hindsight, his death, while no less tragic, was the more likely outcome at his gestational age.

I have said before that the NICU is full of hope. It's actually full of hopes realized and hopes dashed. But hope is all we NICU parents have. No one ever spoke to us of death as a possible outcome. So when hopes are dashed so quickly, it can seem especially cruel.

First, the obvious: Weston was born at 24 weeks gestation. That is four MONTHS early, barely halfway through a normal pregnancy. No one exactly painted a rosy picture of that scenario, but we heard survival statistics ranging from 50 to 70 percent before Weston was born. The worst statistic I heard was from Dr. H, who quoted a 50-50 shot at survival. Of the 50 percent who survive, he said, half have a major disability. In other words, Weston had a 25 percent chance of being a healthy baby and child. None of the neonatologists or other NICU staff ever gave me a percentage. What I did hear repeatedly was that "every baby is different." A friend was told that her 24-weeker would have a 17 percent chance of surviving without disability.

I don't wish I had been told anything different. Weston's death would not have been any easier to handle if I had thought from the beginning that he wasn't going to make it. However, I have learned more about neonatal outcomes since Weston died. Admittedly, it's mostly anecdotal, but, not being a medical professional or parent of a living NICU patient, that's how I get my information now. (Except for my conversation with the neonatologist to determine details about Weston's death that I will schedule when I get home. I want more concrete statistics then.)

So, I scoured the Internet for survival statistics of preemies after Weston died. A reputable-looking nonprofit research organization's website put the survival rate for 24-weekers at  40 percent. Then, my sister's midwife flinched and characterized the timing of Weston's birth as an "awful outcome." A nurse friend of hers learned from a NICU nurse that 24 weeks is "just too soon." In case you're wondering, my sister pumped a lot of brains while Weston was in the NICU but didn't share this discouraging information with me until after Weston died, and after I brought up the issue.

In a way, I was relieved to hear these statistics and anecdotes. With Weston having done comparatively well for the first couple of weeks, I was so angry for a while, because his death came as such a surprise. It seemed like a freak thing, when it actually was the expected outcome. Obviously, I wish more than anything that he had defied the odds in and been one of those 24-week surviving and thriving miracle babies. But I do feel very slightly less cheated that he didn't defy the odds in the other direction.

There are other little experiences as well. March of Dimes is a wonderful nonprofit organization that researches and raises awareness to prevent prematurity and birth defects, among other things. (When I pull myself together someday, I want to volunteer there, and we also asked for donations to March of Dimes in lieu of flowers for Weston's memorial service.) The March of Dimes liaison at Weston's hospital had a 24-weeker in the NICU who is alive and well. One day, S, Weston's nurse, told me to hook up with her because we had that in common, and "there aren't many of [us]." I no longer belong to that club of 24-weeker mothers in the NICU because my 24-weeker died. I didn't think much of S's comment that there aren't many of "us" at the time, but in hindsight, there aren't many in that club because most of the babies die.

Then there was the "wimpy white boy" thing. I first heard that term from a friend who had a son in the NICU a few years ago and had no idea what she was talking about. I have since learned that boys, specifically white boys, fare the worst in the NICU. No one knows why. In fact, a girl born at 23 weeks, a full week earlier than Weston, with the same birth weight as Weston would have had the same prognosis. Evolutionary over-correction? Whatever the reason, it is unfair.

Weston weighed 1 pound 6 ounces at birth. Micro-preemies are defined as weighing 2 pounds 2 ounces or less. Weston weighed a full 12 ounces less than that. He was the tiniest of even the micro-preemies. Lower birth weight correlates with a lower chance of survival.

Something I cannot ignore is the progression of Weston's appearance in photographs. He looked really good in most of his photos I took in his first two weeks of life. When he was switched to the oscillator at 2 weeks 2 days, I continued to take pictures, of course. In person, he looked the same to me, but he looks markedly different in pictures. Anyone going through my Facebook feed would notice that I posted no pictures in his last week. He was sedated that week and hated the oscillator so much, so I didn't want to disturb him more with the camera flash. I would take a picture, it would look awful, I would debate taking another one, and then I would just put the camera away, certain that I could get a better picture the next day. But I never did. It was very depressing. He truly looked a little old man in some pictures, he never opened his eyes, and his head and mouth were at a funny angle because of the oscillator. I still have those pictures, of course, but they make me very sad. It's a visual reminder that things were going downhill.

Being part of the NICU world, I started hearing more stories about preemie "miracle babies." A family had 23 week, 6 day gestation babies in the same NICU, and they blogged about their journey. I followed their blog but never met them or saw them in the NICU. The mom didn't even have time to get the steroid shots to develop the babies' lungs, like I did. The twins went home several days after Weston died, and there were several stories in the paper. The managing doctor, who Shannon met the night Weston was born, as well as the managing nurse, who we know well, was quoted in the article, and there was a press conference at the hospital. I was so angry that the twins got all this fanfare, while my son was dead and seemingly unrecognized. And these parents got to take home TWO babies, while my one preemie could not be saved.

But then it dawned on me. The twins got the fanfare and press conference because THEY were the exception. Weston was the rule.

While Weston was alive, I bought a couple of books about preemies. They were mainly informational and practical, describing medical risks preemies face and helping parents navigate the NICU. But I also scoured Amazon for anecdotal books about surviving preemies. There were a couple, which I ordered, but I did not have time to read all of them before Weston died.

Again, 24-weekers who survive are deemed "worthy" of books because they are the outliers, the exception to the rule. After Weston died, I desperately searched for books about death in the NICU but found almost nothing. (I am a reader. I learn and cope through reading. That's just me.) There are many more members of my club than there are the "24-week survivor's club." An anecdotal book about losing one's child in the NICU would be enormously helpful to me. This existence of miracle baby stories and dearth of resources for parents who experience neonatal death was yet another sign that Weston's death was not unexpected.

In the end, whether expected or unexpected, the death of one's child is still exactly that: the death of one's child. Just like every baby is different, every death is different. While we grieve differently and over different experiences, we, the unfortunate members of the bereaved parents club, share the same tragedy. In the end, our children still left this world far too soon.

This post turned out pretty angry. In my head, it was going to be more detached and just recount my experiences reiterating the near inevitability of Weston's death to which I turned a blind eye, ear, or computer mouse while Weston was alive. But Weston's life and death following a normal-for-24-weeks trajectory doesn't make it any easier, it turns out. Because losing your child IS NEVER NORMAL. I think about these other babies with their press conferences and books and just seethe at the unfairness of it all. Why couldn't that have been Weston? Why does any baby's homegoing have to be accompanied by media fanfare? Why can't they all just remain inside until they are supposed to come out? If Weston had lived, maybe his homegoing in October or November would have warranted a news article. But the best alternative would be that I would still be pregnant, and Weston would have arrived in the inflatable tub in my bedroom about seven weeks from now. He would have already been at home, with the hospital and media none the wiser of the existence of our wonderful baby.