Friday, March 28, 2008

I know that probably by blogger etiquitte, or blogger trying-to-be-cool, you aren't supposed to read some comments, feel a little sheepish, and then go back and make your next post try to iron out the wrinkles of what you really quickly wrote last night. But I really have to do this, I really, really do.
I do believe what I wrote last night. I believe that to me, a 3 pound, breathing baby, sounds like a better option than one who is already dead. But what I may not have made clear is, I really, truly do, feel absolutely, horrifyingly horrible for the family. I am so sorry for Kerri (the mom) and so scared for her, and I'm also scared for the baby. And I also do truly believe that everyone's worst experience is their own worst experience.
I guess there are a few complicating factors which I did not mention in my last post, which was fired off to blow off some surprised steam just before bed last night. One was that when we lost Charlotte, this same grandma who I shot my one-liner to last night, basically told us, "Buck up, kids! You'll have another one! You're young and fun-loving! Don't let THIS get you down!" So it could be said that I harbour just a tiny, teeny bit of a grudge for this attitude, which beyond making me angry just completely breaks my heart, that somebody could dare to think that I could just simply get on with my life, forgetting about the perfect little baby that I made that happened to die.
The other thing is, which was included in this same phone call, is that this everyly-so-sympathetic grandma keeps comparing her situation to mine. She only did it once in the context of my chat with her, but it turns out that she has been doing it to Greg's mom in every conversation. "Oh," she'll say, "You know what it's like".
Holy shit???
I have no idea (neither does my mother in law). I (and she) have two points of reference. One, you push the baby out, and she is dead. I am in perfect condition, she is in perfect condition, but with no pulse. I go home to an empty house.
Two, you push the baby out (or get him yanked from your belly). You're fine, he/she's fine, you cuddle, figure out how to nurse, and go home.
I have absolutely, completely, no point of reference for this. I don't have any idea what it feels like to be in no-mans land. I don't know what it feels like to linger somewhere in between living and maybe dying, or to have life, but contemplate death. I have never been there. As my mother in law put it, "We don't know the unfortunate circumstance that also includes hope. She got a phone call that said, 'Well, we have a 3 pound baby boy'. I got a phone call that said, 'Mom, our baby died'. I don't have any idea what it feels like to have hope".
I resent this comparison perhaps because I wish from the bottom of my grief-stricken heart that something could have been done to save my child, that she could have teetered precariously on the edge. Maybe this is more about me being jealous. If I had succumbed to something like pre-eclampsia and they had taken Charlotte at 33 weeks, there's a good chance she could have survived. There was nothing wrong with her. Instead we were both just so goddamn healthy that we went all the way past 41 weeks and her cord asphyxiated her. But for the mostpart I think I resent this comparison because there isn't really anything to compare, except that Kerri and I were both pregnant and had a baby. The circumstances are completely different.
This grandma even said to my mother in law, in regards to her daughter (who is doing well) wanting to be discharged, "I don't know why she wants to go home to that empty crib."
Yeah, an empty crib. Except that there is a crib with her still-alive baby in it somewhere else, while my poor mother in law had to pack up the sheets and blankets from her grandbaby's empty crib, and put them all in a green tupperware bin, and that's a really empty crib.
I know that everyone is entitled to their grief. I know that everyone's worst day is their worst day, and even if your day was worse, theirs is still the worst that they know. I realize this. But I just, I guess, still feel owed a little belated compassion from when my daughter's death was all but ignored. One would imagine this might spark a little bit of that, but apparently not.

So here's the other thing which is hanging me up, and this is just something I think I have to ask, because I want to know what it is like. I am sickly curious. So, when I'm thinking about the only real point of reference I might have, it's me in the car, driving to the hospital. My water has broken, it's streaming down my butt onto a towel on the seat of our Honda. My midwife has just advised me to come in to be monitored because I haven't felt the baby move since my water broke. And I am realizing, that something might be wrong. The elusive "something". And then, we totter inside and I am lying there on the bed, and she's running that black-box of a monitor over and back, over and back, across my belly, and there's no heartbeat. She's focused on the left side of my belly, based on how Charlotte is curled. Then she says, "Where do they usually get a heartbeat on this kid?", and she slides the monitor to the other side of my belly. And I realize, right then, as she slides the monitor away from the ONLY place where they have EVER heard the heartbeat of my "kid", that maybe, just maybe, my baby is "going to die". This fear that shoots through me, that paralyzes me to the point of not being able to even say anything, it shuts me down, almost.
But then, the ultrasound comes in, and the woman takes a look, and she says, "I'm sorry. Your baby's heart isn't beating anymore. Your baby is no longer alive." And then, the fear becomes fight-or-flight panic, and I feel sucked into a vacuum, and there is a ringing in my ears. I look at the doctor in the eye. I am still paralyzed, so I can't choose flight, so I choose fight. "My baby is dead?" I say to her, hoping these harsh words will elicit her to laugh, say she's kidding. "I'm afraid so," she answers, and I just stare at the wall, overcome with the most helpless, incredible terror I have ever felt, this thing, this thing I am so afraid of, it has already happened, and I CANNOT FIGHT IT. It is over, it is finished.
So here's my question. If your baby is in the NICU, and you are afraid for his life, and then he dies, what is the experience, the ratio, of fear that you feel before he dies, and then after? Do I know the terror she is feeling, or don't I? Because maybe I do, just a little. And is it the terror of just that moment, felt constantly over time, or does the fear of the unknown escalate to make the fear of the unknown (that being death) just as frightening as when it finally happens?
Because right now I have this comparison to draw, that the fear before it happened, that was like being alone in a dark alley, in a bad neighborhood, in the city, and you hear footsteps coming up behind you, and maybe you see a man with a knife.
But when the baby dies? The knife is at your throat, and you feel the blade slice through your veins, and warm, sticky blood is gushing down your chest. Yeah.

Please comment. Am I just the most totally unsympathetic, self-absorbed person ever? Do I have a right to be turning any of this on myself? What is this all about, anyway? (should I be asking this? and then asking for comments?)


Hennifer said...

You are not being unsympathetic. I think you are being the opposite, you are being hopeful. And sadly that hope is maybe easier for you because you know how painful the outcome could be.

I'm not the mother of any angels, both my children are living so I know I speak from a "less experienced" perspective but I think it is human nature for us to picture the "perfect birth" or whatever other X you choose to insert. I don't think we'd procreate much if we focused on what the worst outcome of a pregnancy could be and tried to be happier from there.

It would be nice if you could bottle your wisdom that has come from your tragedy and provide it as a gift for this mother so she, and it sounds her family, could focus on the kind of energy she and baby really need right now. And I know that were the outcome to be the worst she could know that it wouldn't be a contest of whose heart broke the most. I've seen too much of this community to think she'd get any less than world class support.

I thank you for sharing your point of view. I always try to open my eyes a bit wider. I'm sorry people's memory can be so shortsided.

Awake said...

As to your question at the end, I cannot answer.

But, I understand fear in regards to your child. My fear came when I went in for that ultrasound to narrow down the due date and realized the tech wasn't looking at me. I pushed the fear down and made a joke. My fear grew when the tech actually walked me to the doctor's exam room (rather than pointing the way) and the doctor didn't come in for a half hour. I pushed the fear down and thumbed threw a magazine. My fear was realized when the doctor walked in the room and looked me right in the eye as he pulled a chair up close, very close, and put his hand on my knee. That fear was the worst fear I've ever felt. That grief was the worst grief I've ever felt.

I think its only natural that you compare what's happening to these friends to what happened to your family. But, it sounds like this grandmother is kind of an idiot. Maybe just take what she says with a grain of salt and move on to your friend in the hospital. She's going to need you. Because she's feeling that worst fear and grief.

sweetsalty kate said...

I've done this tons of times.. clarified and backtracked and restated and rethunk. I think that's a good thing... don't feel weird about that.

People say the most ridiculous, over-the-top insensitive things when you lose a child. I don't know why. I'm sorry you're still facing that.

As for your question about the NICU, it's just different. And NICU experiences can be moderately tame, or horrifying. There's a huge spectrum there, from mild jaundice or acid reflux to complete and utter loss.

Sure, you know some variation of that fear - of losing a child. But being in the NICU is just so different, in so many ways. And so individual, so I can only comment on my experience.


You know what? I just wrote a whack about our NICU experience, and then deleted it.

I just wrote about this, sort of (not because of your last post, honest - this has been stewing for a long time).. there's no point in trying to envision anything other than what you know, or to try and compare, contrast.

All we can do is try our best to quash self-pity. And that's so, so, so hard.

Is it better to have a baby near-death (and eventually die) in the NICU than to have a still baby? I can't say. My point is, I don't think it's worth trying to figure that out.

Good for you for showing us your thinking through all this. A great thing to do.

Natalie said...

On another note: I sent the link of the new article "photographer heals parents heal" to the director of the nurse midwifery education program in my area- and she is including it in one of her courses!

Thanks for sharing that!


Sara said...

I’ve spent perhaps too long tonight thinking about your post and your questions. I don't find you unsympathetic for pointing out that the baby is alive and that there is hope. But I think it is hard to embrace that idea fully when you are in the scary place of waiting to see which way the balance is going to tip. You need the hope, but it isn’t enough—at least it wasn’t for me.

My baby, after a brief, not too scary NICU stay, some increasing health issues, open-heart surgery, and two blissful weeks of apparent health, ended up back in the hospital, in the ICU for months. It was a day-to-day, sometimes hour-to-hour existence. I think that the fear that your baby may die does not cut your throat, it slowly strangles you, little by little. How high the terror gets before you baby dies depends: how long is your baby in delicate balance of life and death? How many times and how high do your hopes get raised before they are dropped into the freefall of fear? How close do you get to the edge of death before the tide turns? The terror builds; it can be an exhausting up and down or fear and hope.

Hope is necessary—and yet sometimes an amazing miracle itself. Hope can get pretty battered, but yes, hope, a chance to fight, these things do make a difference.

When the doctor first told me that she didn't know if my baby would ever come off the ventilator, would ever go home, I simply decided that that was unacceptable, and I spent each day watching him, waiting with him, willing him to be better. And he did.

We were on the verge of going home, but he got sick again. He turned blue in my arms and coded. He stabilized, but the next day began to spiral downward. And the next night I stood outside of an ICU room watching as hordes of doctors worked over my baby, and one came out to tell me that they were doing all they could for him, but some of the treatments couldn't continue long. If things didn't turn around soon, there was nothing else they could do. My baby was at the tipping point. I accepted for the first time that my baby might die. I made the social worker get me a rocking chair, because if they told me there was nothing else they could do for him, I wanted to hold my baby and rock him. Then I waited. They finally let me in to the room. And I talked to my pale, paralyzed, intubated baby with lines attached to every part of his body. And I asked him to hang on. I asked him to wait for his daddy to get there. I asked him to fight longer if he wasn’t too tired. I told him I loved him. The knife was at my throat that night. It cut me, but didn't kill me.

I thought my story was going to have a happy ending: I was in the scary neighborhood, survived the knife at my throat, was just getting used to the idea that I got away, was still scared but taking a tentative sigh of relief, when another knife came out of no where.

Two days after we got home, my baby got sick again. I saw him escalate in hours, saw him back on a ventilator. Utterly exhausted I clung to the thinnest thread of hope. And then the monitors started beeping and doctors and nurses came running and I knew what was happening. I watched my baby die and then they disconnected him from all the machines and I wrapped him in a blanket and I held his body that had been at once so strong and so fragile.

Of course a three pound, breathing baby is better than one that is already dead. But when you have a breathing baby, no matter how small or how sick, you can’t really imagine them dead, but you can imagine them bigger and healthier. When your baby is really sick, is in a realm where death is a real possibility, you can say rationally that at least your baby is alive, but it is not enough. You need to know that your baby is okay; you want to KNOW, not hope, that your baby will be alive tomorrow. You want a long life for you child, not a truncated one. Hope and fear coexist. Hope balances out the fear some, but that fear is real and overwhelming and in no way held at bay by the idea that it could be worse. I was always glad, always thankful that my baby was alive, but I still wanted more. I wanted him healthy; I wanted security. I believed until the end that he would pull through. I had hope that astounded me sometimes, but the fear of waiting, worrying, wondering can take so much out of you even while you hope.

Debstmomy said...

I relate to every single word. You are not unsympathetic or are a Mama that lost her baby right before it's life was supposed to begin. Their 33 weeke's life has begun, new memories are forming, daily. That was lost from you. It is very hard to compare, similar but so NOT the same. Each a different experience.