Sunday, June 30, 2013

To circlage or not to circlage, that was the question

A year ago today Steve dropped the girls off with some friends for a day-long play date and came in to the hospital to be with me.   He didn't bring a camera.  It was June 30, 2012.

The night before we had been told about a circlage.  It is a stitch that, like purse strings, would close the open cervix.  We'd been given the option to do one or not to do one.  The doctor explained the risk.  The circlage may go wrong.   The prolapsing membranes, or the "sticking out of the baby's sac beyond the cervix," complicated things.  By putting in the circlage, accidental rupture of the membranes could occur.  My water could break, possibly introducing infection or leading to uncontrollable labor.  We could lose the baby.
He told us it was up to us to decide how to proceed.

Steve is an economist, which also means he is a statistician.  He works with numbers (especially the kind that look like greek letters) professionally.  "Is there a study that looks at this sort of thing that we could read?" he asked, "We could use some more information.  What are we looking at here?"  The doctor explained that each journey is a bit different, that there weren't any promises, that this was a hard case -- it was hard to know what was best for the baby and the mom.

An hour later he came back with a study of women who also had prolapsing membranes.  Half were treated with bedrest alone, half were given a circlage and indomethacin (a drug).  It was this study.  The sample set was small, but we poured over a graph and the numbers.  In the case of bedrest only, the mean amount of days gained was 20.  In the case of the circlage group, the babies gained a mean of 54 days.  But the bar graph of each individual participant in the study is what tipped the scale.  In the bed rest alone bar graph, we saw we might gain two to three weeks -- like the mean suggested -- but that didn't get us to an age of viability, and even if it did, all the bedrest-only babies were born prematurely.  With a circlage, a few babies were born in that first month, but then if they made it past the first month, many -- seven out of thirteen -- made it to full term.  A full term baby.  Oh, how I wanted that. This was his chance.

The doctor let us sleep on it, and when he came in for rounds that morning a year ago today, we notified him of our choice.  He told us we could have another day if we wanted, to think some more.  We said we were certain, a circlage it would be, and we'd prefer not waiting another day.  We wanted this risky proceedure behind us, and I didn't want to risk going back into labor. When it was done, we'd have a clearer sense of what the murky future might be, and we could step off this narrow fence between life and death.  For a time, at least.

But Steve didn't bring our camera.  "You have to have it," I said.   He didn't want to leave my side. "You must get a camera."  I said, "Maybe they have a disposable one in the gift store."

I might be meeting my 12 oz baby today, and I wanted a camera to take his picture.  If I wasn't going to know him, if I was going to have to say goodbye, I wanted to document every minute of his life so I could remember.  There wouldn't be that many minutes if the circlage went wrong.

While he was gone, I started doing some research on the computer he'd brought with him that morning. (Why had he not brought a camera?)  The nurse walked in.

"I wouldn't do too much research on a circlage" she said.

I am sure she didn't want me to talk myself out of it because one person somewhere in the world had had a bad experience, or because the images looked scary or something.  But we were firm in our decision, so that wasn't an issue.  Besides, that wasn't why the computer was out.

"I'm not researching that," I said.  "We don't have a name for our son.  I'm trying to find a good one.  If we're only going to know him for a few minutes, I want to be able to call him by name."

This time I did cry in front of a nurse.  I didn't mean to, but it just came out.

We thought about calling him William, after one of Steve's favorite grandpa, Grandpa Bill.  But Grandpa Bill had passed away recently, and we didn't want to lose two Williams back-to-back. We ran into a lot of that.  What do we call him?  What name honors him, regardless of how long or short his life is?  If he's born today, he will not live.  What if we then had another boy? 

We came up with a name moments before the circlage was placed, but I can't now remember what it was.  Maybe it was Samuel?  It doesn't matter, though. We ended up not needing a name that day.

By this point, our friends and family all knew what was happening.  Prayers were pouring in.  Thank you, friends.  I had to delete one update, because Steve worried it was a little too detailed, but the point of it all got out there anyway.  We were fighting for our son's life, and wanted prayer.  So prayer we got.  That meant the world to me.  I knew that we weren't alone, no matter the outcome.

The doctor decided to use general anesthetic instead of local. He explained that he wanted me as still as possible so that he could work with the prolapsing membranes. I appreciated that.

An anesthesiologist in the pre-op room -- not my anesthesiologist, but just one of the other ones hanging out -- declared loudly prior to the procedure that he couldn't believe they were putting me under general, that the best practice was local, that if he were in charge of my case, he wouldn't be using local.

I was grateful for my anesthesiologist, who clearly had a better relationship with the high risk pregnancy doctor, and who understood that sometimes "best practices" don't apply. I wished the other anesthesiologist would keep his opinions to himself.  No sense scaring the patient. That was me, I was the patient. I wasn't  in the mood to be scared or second-guess my doctor.

And frankly, I didn't want to be awake.  I wanted this procedure to be over, and I wanted to know we were all okay -- or not -- but I didn't want to know what was unfolding when I had no control over it and my only option was to stay as still as possible. I trusted them, and I knew this was our best shot.

Before we went in to have the surgery done, the doctor told me, "I only know what we saw most recently. If I get in there, and things are different, and I don't think I can place this circlage safely, you will wake up and nothing will have been done. I am going to be as careful as I can."

"Thank you," I said, "and thank you in advance for trying."

What felt like only a few minutes later, I woke up. I felt the stitches. I was dry. It was done.  Before the doctor said a thing, I knew where we were. I sighed in relief as the doctor said,  "The circlage was placed successfully."

I went back up to the high risk pregnancy floor with my husband. I had spend the morning sending instant messages to a girlfriend who had had a circlage placed early in the second trimester and carried her baby to term. Suddenly this was a new possibility. She sent me an instant message that evening. "Glad to hear your membranes did not rupture. The worst danger should be over now and it should be smooth and bored sailing I hope until 37 weeks."

I agreed. She was right. We had a good chance now, I thought.

"You just have to make it three weeks until he is viable and five until he will likely have no long term complications. You can totally do it. If the circlage does its job you will go to term.  I am so happy for you.  I was worrying all day."

This was just the pep talk I needed. Three to five more weeks.  I could do that, right? Yes, this was my first goal - three weeks, 24 weeks gestation. Then 28 weeks. Then 34, then 37. Each number meant a better life, greater chances. We could get there.

June 30, 2013  Two weeks and three days from now is my son's first birthday. We didn't make it three to five more weeks, but we DID make it.  Praise God, who knits most of us in our mother's womb, but knit Jonathan together half inside and half outside the womb, with skilled physicians and nurses as his hands in the process.

We met a new family at church today and decided on a spontaneous backyard picnic.  The weather was perfect, and Jonathan spent most of the time on a blanket in the shade of an oak tree laughing and grabbing his toy lion rattle.  He has started to enjoy the out-of-doors. He smiles.  A lot.  We are grateful you spent as much time in as you did, buddy.  We are glad you can be outside now.

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