Monday, April 30, 2012

Well hello there little man

Both eyes open for the first time. His pupils are responding better to light. Progress!

The beginning and before


Two things that happened made me want to write about our experiences of the past couple days.  The first was the look of relief on Kate's and David's face when I told them Asher would survive.  I don't want anyone thinking things are worse or better than they really are.  Focusing on the positive is really important to us right now, but I also feel the need to be honest and relay accurate information.

The second was recounting the labor, delivery, and what came after with our nurse, Erin.  She reminded me of so many things that happened - funny, scary and everything in between - that I otherwise might have forgotten.  This is the most important thing that's ever happened to us, and I want to remember it.  So, I'm writing down details for our own benefit, though they might help others understand.

Marissa's contractions started around 3am Friday morning, mild enough that she was able to go back to bed.  In the morning, I went to work, and she went to see her midwife.  She had tolerable contractions throughout the day, including in the check-out line at Wal-Mart, freaking out the cashier.  Right as I got home from work around 3:30, her contractions got more serious, and by 6pm we were at the hospital.  By midnight she was fully dialated, and things were moving along well.  But, we still had a long night ahead of us.  

Asher was trying to exit face up, which is not the easiest way for his mom to get him out.  This and a little piece of cervix that wouldn't let go of him kept Marissa in labor through the night.  I've never seen such a feat of physical and emotional endurance.  Over and over and over again, she pushed.  Progress was slow, sometimes seemingly nonexistent.  By about 6am, she had been pushing for 6 or 7 hours, and the midwife, Meg, uttered the word "c-section".  The nurse tells me I exploded out of my daze, knowing how hard Marissa had prepared to avoid this.

Something in Marissa must have exploded, too.  After all those hours and a level of exhaustion I can't begin to comprehend, she grabbed her legs, reached into her soul, and pushed.  Those next two pushes took her from the edge of surgery to the brink of success.  When it became clear Asher would be born naturally and soon, Meg began to prepare. Considering the amount of time spent pushing, she called a respiratory team from the NICU, just in case.

Asher Solomon White was born at 6:47am on April 28th, 2012.  He weighed in at 7lbs 13oz.  With Meg's help, I pulled him into the world and onto his mother's stomach.  

Nearly as quickly as he was placed there, it seemed he was taken away.  Following Asher out of his mother was a good bit of meconium (baby poop) which seemed to be the first concern.  But in seconds another concern quickly trumped that.  Asher didn't start breathing on his own.  The three person respiratory team instantly grew into an army of people in scrubs with serious looks on their faces.  

The team began breathing for him, and I got ready to go with him up to NICU.  Marissa couldn't go, but she was able to hold him for a few seconds.  Upstairs, I sat and watched with a combination of physical and emotional sensations that I hope I never go through again.  Soon after we arrived, the doctor told me that his pupils were not responding to stimulus.  He looked at me and said, "This is serious."

Hours moved by in a blur that I can't really remember.  Slowly, Asher began using his lungs himself.  The hospital called Brad, and he came and sat with me.  At some point I was able to check in with Marissa downstairs, and we talked.  She came back upstairs with me to give her baby a good hello.  

One of the first treatments Asher received was a cooling pad to keep his temperature at about 91 degrees.  Cooling the body can help reduce swelling in the brain.  It also slows down the body's metabolism, which means fewer bodily resources are needed, making it easier for the injuries to Asher's brain to heal.

A couple of hours after birth, seizure activity began.  He was treated with sedatives, and the seizures stopped.  As his first day went on, the sedatives wore off, and the seizures stayed away at first.  Slowly, though, some smaller seizures came back.   It's hard to tell when he has them now, since they can look as simple as a mouth quiver.  

Theories that will likely never be proven began to form about what happened.  What we do know is that, for some period of time before birth, Asher was deprived of oxygen.  This resulted in damage to his brain that caused his inability to breathe at birth.  We don't and probably won't have a good explanation of how that might have happened.  One idea is that he had a stroke during the pregnancy.  

Whatever the event was, the doctor's best guess is that it happened in the hours or days before birth.  Despite all the stress of the labor, monitoring throughout showed no problems with his heart rate, which suggests the event did not happen then.  All his check ups prior had shown a healthy baby.  But we just don't know.

As Saturday progressed, there were some improvements.  At first, most of his movements were seizure related.  He also hadn't been responding to touch, raising concern that those sensations weren't reaching his brain.  But soon he began moving on his own, and telling the doctor by his movement that he could feel his touch.  Best of all, by late afternoon, he was breathing well enough on his own that he was able to be taken off the ventilator, taking his first unaided breaths.  

Our first visit with the doctor on his birthday gave us most of this information.  It also gave us an idea of his possible outcomes.  Like everything else, the possibilities are vague and broad, mostly scary but with reasons to hope.  At worst, Asher may be severely mentally and physically disabled.  He may not be able to eat on his own, might never walk or talk.  The fact that he began responding to touch makes this extreme less likely.

At the same time, it's possible that there will be no effects from this.  Again, though, there is lots of evidence to suggest this opposite extreme is unlikely.  Our visit with the doctor on Sunday, which so generously lasted and hour and a half, left us feeling that the answer lies in the middle.  It's a question that won't be answered over days or months, but years.

Asher's case is extreme.  Our midwife, who's birthed thousands of babies, has had this happen one other time.  The neonatologist said they see cases like this 6 to 12 times per year in their 700 bed hospital.  We have so many friends who are expecting right now.  I hope when you read this, you understand that the chances of this happening to anyone are very, very slim.  That would also include us in the future, says the doctor, if and when we are able to grow our family again.  

On Sunday, Marissa and I were able to do some small things to care for him.  He began to dirty his diapers, and we were able to change him.  I don't remember the last time I changed a diaper, which would have made this challenging enough, but the wires and tubes created an extra obstacle.  

We were also able to gently re-position him on his cooling mat.  The mat isn't the most comfortable looking thing, especially for a newborn, so he needs a slight re-adjustment every hour.  These small things were important to us, since we aren't able to hold him or even touch him too much, since the stimulation stresses him.  He'll be slowly warmed off his cooling mat on Tuesday, and depending on how he responds, we might be able to hold him then.  We're both so looking forward to this.  One of the hardest things, especially for Marissa, has been that he doesn't entirely feel like he's ours yet.  We haven't had the kind of bonding time a family needs, just sitting and touching each other, gazing, or breast feeding.  It will be a special moment when this happens.

Physically, Marissa is recovering well.  She's no more sore than one would expect of any new mother.  Emotionally, I'm noticing differences between us.  She was so exhausted at the time that things didn't entirely sink in.  I remember coming downstairs for the first time from NICU and looking at her sitting there.  She seemed ok, just happy that he was alive.  I'd been so worried about her, it was strange to see.  I worry that this will change.  She said just a few minutes ago, on Monday morning, that the better she gets, the harder it gets.  But she has been so strong, and I know that she will continue to be.  My sister said that she has to believe that God gave us Asher because of who we are as people.  Marissa is proving that true.  As a clinician, it should matter when I say that Marissa is the most mentally sound person I've ever met.  Her emotional capacities seem superhuman, though I hope she knows they don't have to be.

For me, day one was harder than day two.  As I start day three, I hope this will continue.  I felt, and still feel, like I'm living someone else's life.  Slowly, I'm able to imagine what our family might be like without crying.  I'm learning that some of the stuff I teach my clients is really true.  Thinking about the future can be very toxic.  I feel the best when I focus on the present, on what's in front of me, on the small successes and signs of hope, and on what a beautiful boy he is.  Since I can't stroke him or touch him too much, I've been smelling him a lot.  He smells creamy and rich.  It's a thick, fresh smell.  His skin is so soft.  He likes to hold his hands up by his head, under his chin, and sometimes he puts his hand to his mouth like he wants to suck.  He's perfect, just the way he was meant to be.