Thursday, April 3, 2008

Three months

Has it only been three months?

Three months already?

Three months ago today I went into the hospital to induce labor.** Right now, we were probably waiting for the epidural. Waiting for the pito.cin that didn't work.

There's probably a long post in me about this, the whole sequence of events. Maybe I'll write it later today. It feels too much to write about, too long, too many things. Aside from all the other horrors of those two days, there's one thing that sticks out. One sensory event that seemed to persist that day: The sounds of the fetal heart monitors through the walls. The sounds of other people's live, likely healthy, babies waiting to be born. Waiting to take their first deep breaths and scream. Waiting to be bundled up and cooed over, warm and soft and sleepy.

We knew Joshua was gone. Jacob was, for all intents and purposes, dying without amniotic fluid. But his heart was still beating. We knew his chances at life were slim:

-- make it to 24 weeks without infection
-- make it through birth
-- make it through likely severe brain bleeds,
potentially causing blindness, deafness, cerebral palsy,
major cognitive impairment or coma
-- make it through likely nec.rotizing entero.colitis
-- make it through the ventilators on poorly developed lungs
due to no fluid for practicing breathing
-- make it through weakened, undeveloped limbs due to
no fluid for practicing movement

IF we got to 24 weeks. If he lived that long -- a month -- inside me with no fluid. If I didn't expel him. If neither of us got an infection. If I didn't develop a placental abruption and If I didn't develop a blood clot (not wholly unlikely considering my thrombophilias).

The doctors, particularly the ragged neonatologist, gave us about a 5% chance of having a child without a severe disability, if he in fact lived.

I always wonder about that 5%. Message boards are filled with stories of people who made it despite the odds. Who went 28 or 32, or even 36 weeks with no fluid. And their babies turned out fine, supposedly. In my family, we always do everything possible, push the limits, try everything. But it seemed that doing that would only cause Jacob pain. C and I had many difficult conversations about what to do. Lots of tears. I love and understand my husband's process in this. I can't speak for him.

What I struggled most with was what would cause Jacob suffering. Was it selfish to try to force him to develop and live in a world that I could not prepare him for? I'm not saying that right. I could not give him what he needed to survive, thrive, in the outside world. I could not bear the thought of him struggling to breathe, suffering that feeling of trying to get air in his underdeveloped lungs. To undergo procedure after procedure, fighting off infection, dealing with surgeries, pain of recovery, of brain aneurisms. A body that would not let him live, not let him connect with others, to get joy out of life.

A body that would, in all likelihood, not survive the nicu, despite all the interventions.

And yet. I still doubt. I still wonder. I crave that child with every fiber of my being. More than his brother? I loved them both. But Joshua was gone. With Jacob, maybe, we still had a small small chance of being his parents. Of tending him, taking care of him. Getting to know him outside of my body.

It felt selfish, though. To put him through the ordeals of all those obstacles for his entire life so we could know him. His pain and fear were what I feared most. The panic of suffocating. I just didn't want him to hurt. I didn't want him to suffer.

When we talked about inducing labor, the question I couldn't seem to get answered was how he might experience it. Would it be painful? Scary for him? Long faces told me that at not quite 21 weeks, he would likely not survive a vaginal birth or if he did, not for long. I knew that, but what would he experience? If he did live for a few minutes, would he suffer? If he died inside me, would he feel pain? Would his heart just stop?

Maybe no one has the answers to these questions, which is why no one ever really gave me one. I've noted this before, but one of the doctors, Dr. ColdFish had one wise thing to say in all this: You will probably never be more than 51% sure you did the right thing. You will always wonder.

Three months out, and goddammit if he isn't right.

**This post touches on difficult decisions that not everyone agrees with. I am fine with agreeing to disagree, but I don't want to hear about what you think we *should* have done. I am glad that I have company who respect the difficult situation we were in.**


Tash said...

Having gone through some similar thought processes, I can say: no matter what I decided, I could've called it selfish; no matter what I decided, I would've at some point felt guilty. Either way, my life from that point forward would've been filled with pain and heartache of some form. No matter what, I lost. And it's the double-edge sword that keeps me up at night, too. Would I like one more day? One more book? One more cuddle? And what would that have felt like *to her*? I know this: When I dream her here, she's healthy, running, eyes wide open. That's my perverse prize.

Searching said...

I'm sorry, just so... sorry. Your beautiful sons are so very loved. I'm sorry you had awful decisions to make with no real answers. I think about what the babies experience too, and wish we had an inkling of an idea. You are an amazing mother.

c. said...

You had to make some very difficult decisions in a very short period of time. I believe, wholeheartedly, you did what you did to protect your son. Not to hurt him or cause him pain. I don't see your decision as a selfish one at all, and I am certainly not in a position to tell you what you should have done not ever having been in your shoes. You did what you could with the information you had. That is all one could ask. Don't make it doubt the love and longing you had for either of your boys. It's not fair to you...or them.

CLC said...

I am so sorry. I imagine that was the most agonizing decision you will ever make. As C said you did the best you could for them. My thoughts are with you and your husband. 3 months is so hard, at least for me.

Antigone said...

I ached, wondering whether he experienced any pain. Whether he knew he was asphyxiating. I found a lot of research on neural activity which concluded that it wasn't until 24 to 26 weeks that the brain cells really start talking to each in a way close to thought or awareness. Knowing that my son did not have enough neurological development to feel afraid or to suffer helped ease my guilt.

Antigone said...

*note to add that guilt for me comes from just knowing that my body created a life which it could not sustain

luna said...

I can so identify with this, STE. as you know I was in a similar position but without the twins. such an awful horrible experience that no parent should ever have to face. there is no good or right way. as tash said, there is just heartache and pain in some form. as antigone said, there is guilt. and yes, knowing that our bodies could not sustain the life it created is a terrible thing to know. there is no real choice involved -- no one should ever be in that position.

thinking of you and hoping it gets a little easier. ~luna

Ya Chun said...

I'm so sorry. It is really rough. I can really understand 51%, but remember that 2% can make a big difference. Parents have the responsibility to make the tough decisions and you did what was right for your family, especially your son. And remember too, that even when the decision has already been made for us, as with your Joshua, you still feel guilty and have regrets. I know I do. It is where we go from here that is important.

Busted said...

There is no right decision in these situations. While I mostly feel peace with our decision (we made the same decision you did), I struggle constantly when hearing the stories of miracles that fell outside the norm of statistics. I tell myself I made the right decision for our babies, but I question that constantly.

You're not alone.

Carrie said...

I think guilt is awful. You loved your boys.
Thinking of you x

Newt said...

What a beautiful, sad post. I don't know if it means anything to have a stranger say you did the right thing, and that your love for your boys is obvious, and profound. But I hope it helps to know I'm remembering them on the anniversary of their loss.

Take good care.

niobe said...

It's so true that no-one has the answers. We can't do anything more than the best we can.