Smiles

Marissa's grad school roommate, Amber, flew in for a long visit last week, all the way from Chicago.  The day she arrived, Brad came over for a family dinner, and during dinner prep began telling me about a hiking trip he and Thompson were planning for the next day.  Following the Black Mountain Crest north from Mt. Mitchell, it's a beautiful, rugged trail that I've only done once for my "bachelor party".  As I'd resigned myself to a life devoid of backpacking until at least the fall, and maybe next year, I listened with a "sounds great, have fun" attitude.

It was then that my wife, mother of a demanding two-month old baby, piped up and said "That sounds fun, Zach, you should go!"  Confused, my jaw hung lower and lower with each second that passed without a punch-line.  Granted, Amber would be a big help, but a friend is not a co-parent.  When I eventually accepted that she was serious, I quickly started planning the trip with Brad before she could change her mind.

What woman does that?  Marissa, that's who.  The same woman whose boundless energy and patience leaves me in the dust day after day.  "Transformation" is too strong a word for what motherhood has done to her, because you could always see a strong mother in her.  Back in college, after the first extended period of time I spent with her, I remember saying to a friend, "I'm not sure if I could ever date Marissa, but I'd want her to raise my kids."  (Turns out I could date her, too.)  Now, it's as if she's the same person, but with a new button, one that only Asher can push, and doing so injects her with the energy, drive, and focus she needs to be an amazing mom.

An example of her motherly predisposition:  As a young child, Marissa says that, in addition to being fiercely defensive of her baby dolls, she would "breastfeed" them.  Only when I think about this fact do I get truly disappointed that breastfeeding hasn't worked with Asher.  It's unfair that someone with such a strong drive to mother is denied that most mothering of acts.  Yet that's her lot, and on the whole, it feels normal now.  Life would be easier with breastfeeding, but we've managed to incorporate pumps and bottles into a routine that works.

The biggest factor making this and every other aspect of our lives easier is a generous gift from Asher, one that, I'll warn, might drive you parents to throw the nearest blunt object at your computer monitor.  Most nights lately, Asher sleeps from sundown to sunup.  I sleep all night, and Marissa gets up once to pump.  It's amazing.  He's also chilling out, having longer stretches of calmly absorbing the world, and mostly limiting his "happy hour" to right before dusk.  More and more smiles are appearing, and in the past few days, our favorite Woody Guthrie song has even gotten some quasi-laughs.

Clearly, all this helps daddy's sanity, but it's also great for his brain.  Sleep is the best time for his brain to repair any possible damage, while being calm mean he can learn, and maybe get in some homework from his physical therapist.

Most of what we work on for PT is just encouraging him to do normal baby stuff using both arms and legs.  The primary concern is still about cerebral palsy and whether or not he'll have full use of his right arm and leg.  We'll put him on a ball on his stomach and roll him around, encouraging him to lift up his head and use both his arms to stabilize.  Or, we'll try to get him to grab on to a toy and track it with his eyes.

His favorite, though, is his funhouse mirror with toys that dangle in his face when you hold it over him.  He's mesmerized by his own reflection, sometimes staring at it for half an hour while batting and grabbing at the toys.  It's baby catnip, but it's also good for his brain.

At first, his right hand would stay closed much of the time, letting his left do most exploring of toys, my face, or whatever was in front of him.  More and more, though, his right hand joins the party.  If you lay him on his stomach, you can tell his left arm is much better at holding up his body than his right.  He leans on his left elbow, while his right is often stubbornly sandwiched beneath him.  Still, we feel like he's made a lot of progress on this, and see no reason he can't keep it up.

*****

A couple weeks ago, we went back to the NICU.  A social worker there called us about a family whose baby, Zander, had gone through something similar to Asher, and she asked us to meet with them for peer support.  On our way there, I remember almost looking forward to seeing the unit again, like some kind of reunion.  Being there, though, I was reminded of how easy it is to let your mind slip back into negativity.  Asher started wailing and couldn't stay in the room with Zander, so I paced the halls in mostly unsuccessful attempts to calm him.  I noticed that, after being in the NICU and hearing Zander's story, Asher's cries made me worry like I did after our team meeting from hell.  Was he crying because of his brain injury?  Because he was in pain?  I wanted to go home.  The NICU saved my son's life, and maybe his brain, but there, he is sick.  At home, he's just my son.  

I wanted Zander and his family to go home, too.  Their mourning felt deep, and I wanted them to have a chance to move on with their lives, the way we have.  Later that week, they got that chance.  If you'd like to help Zander, Hope and Ray, his grandma is trying to raise funds for an expensive trip south from New York so that she can meet her grandson.  You can donate by clicking here.

Nine Weeks Old

This is the hardest thing I've ever done. Asher's birthday was the hardest thing that's ever happened TO me, but I didn't have much to do. Now, it's all up to me and Riss. And it never stops.

Asher's started appointments with a physical therapist who comes to the house. I wasn't at the last one, but Marissa was told the most important thing we need to do is keep him calm. He was apparently too upset that day to do any therapy, and the time was spent unsuccessfully trying to console him. The therapist that day described him as a very tense baby.

Much of the time, Asher just looks uncomfortable in his own skin. He writhes and claws around like a demon is trying to get out. It's usually possible to console him, so I don't think we could call it colic, but it often takes a lot of work and a long time. Before something works, we have to try every trick we have: walking, feeding, pacifiers, going outside, going inside, diaper check, another diaper check.

These are all things most parents have to deal with. Any good parent asks themselves, "Is this normal? Is this a problem?" For us, added to that has been worries about his condition. He's a tense baby. Would he have been that way regardless? Is it because the antibiotics messed with his stomach? Or, is that because he has brain damage? Every worrisome thing he does is colored, even if slightly, by these thoughts.

Before being discharged from NICU, we had to watch a video about shaken baby syndrome. Arrogantly, I dismissed it, saying "Yeah yeah yeah, don't shake your baby, I got it." After all, who would do such a thing? I really don't think I'd ever let myself get to the point of doing something so terrible. I'd set him down and walk away first. But, like I've heard from other parents recently, I know now how it happens.

Part of that arrogance came from having never heard him cry. Now, he's cried so much that he lost his voice for a few weeks. It's just starting to come back. Instead of desperately hoping he'll cry, I can barely remember what it was like to have him lay quietly all day, patiently waiting for feedings that were precisely three hours apart and between 100 and 120ml each time.

I don't know what I'd do if I didn't have Marissa. Single parents have rocketed to the top of my respect list - it seems impossible to do it well.

*****

I wrote what's above a couple weeks ago, on Father's Day. As you can see, it was a rough one, maybe the worst. Things have gotten much better since then. Last night, Asher slept essentially the entire night through. Nights have been one thing that's been relatively easy this whole time. He doesn't stay up screaming, and goes back to sleep pretty quickly after eating.

Little signs of smiling are starting to appear, as well as noises other than crying. Routines are being established, like Asher's nightly "happy hour", so named because it's when we could most use a drink. Mornings have been the most peaceful, and he's spending more time then and at other points in the day simply awake and taking in the world.

Last week was a busy one for doctor's appointments. First was the neurologist, who was concerned about Asher's right side being more tense than the left. The right hand tends to ball into a fist a lot more, and that leg kicks more than the left. It's possible this could be early signs of cerebral palsy.

The next day, he had an encouraging physical therapy appointment. They were happy to see Asher could calm himself more easily than in his last appointment, which needs to happen before any real PT starts. His right side was responsive that day, and really has been since then as well. We practice opening up his right fist more, hoping to teach his brain learns to do this on its own.

Last, we went to see a neurosurgeon on Friday. Back in NICU, one of the doctors was concerned about a Chiari malformation in Asher, where the brain stem actually protrudes out the bottom of the skull. If severe, it can require brain surgery. Luckily, it seems we won't have to worry about this, said the neurosurgeon. If Asher has such a malformation, it's so minor that it barely shows up on an MRI and likely won't cause any symptoms. With better MRI technology, doctors are finding these minor malformations are more common than previously known, but they're not usually a problem.

I've been wanting to blog for weeks now. When I started this, blogging was my therapy. Writing is easy when it's fueled by emotion. As that has fuel has thankfully run lower, so too has the desire to write, to say nothing of my new time constraints. But, I know how important Asher has become to his fan club, many of whom I've never met. I'm hoping it gets easier to keep you all updated as I settle into this new parenting gig.

Speaking of Asher's fan club, we've had a lot of really creative support through his ordeal, none more so than this little gem sent to us several weeks back:

Yours is the first face that I saw

I think I was blind before I met you

Now I don’t know where I am 

I don’t know where I’ve been

But I know where I want to go

That's our friend Chandra singing "First Day of My Life" for Asher.  [Wild applause!]

She's not the only person who's been inspired into song.  One thing I've learned about the Kent family is  what a good lyricist Asher has in his Grandma Gerry.  I think she's written songs for all her grandchildren, though Asher's is a bit different than her other works:

Oh, little Asher you can hear me!

Oh, little Asher you can see!

Oh little Asher how we love you!

Oh little Asher you cried for me.

Words by Grandma, vocals by Mom.

Other happenings, which have to be posted in bullet form, otherwise I'll never finish this post:

• Both my and Marissa's parents came and stayed for a week at a time.  Her parents cleaned our house top to bottom, while my parents finished off the patio I'd started with a fence and landscaping.  
• Asher had his bris at the house, with Brad and Kate as godparents, and Rabbi Rob, Asher's doctor, and Grandma and Grandpa Kent attending.  Obviously, a traditional bris wasn't an option, so a little pin prick did the trick.
• Asher's had a lot of visitors, which helps keep daddy and especially mommy sane.  Also helping in the sanity department has been his increasing ability to get out of the house without causing too much chaos.  He's had his first visit to the Bywater, a couple of restaurants, and, hopefully in a few minutes, his first soccer match in public.  Viva Espana!

Time to get working on that.  Until next time, world...

Act Two

If every day in the NICU passed like a week, since Asher's been home, the week has flown like a day.

Did you know babies are a lot of work? It's something I knew and accepted before Asher, but didn't fully understand why it was so. Now that we, not a team of nurses, are in charge of his round the clock care, he fills our entire day.  Especially with Marissa still pumping, even the times he's sleeping are spent cleaning the house, scrubbing his bottles and pumping gear, and trying to fit in all the old household jobs on top of that.

Asher's naps are also spent by us in a combination of relief and terror. We slink around the house like we're trying to evade a deranged murderer, knowing that one creaky floorboard, one stub of the toe could mean our demise.  Decisions to risk picking up his sleeping body make me feel like Indiana Jones stealing treasure at the risk of being crushed by a boulder.

He likes being outside.  We spent hours outside at a party for our friends Will and Katy, who are due in July, and Asher was calm and happy the entire time.  It helped that there was a deck full of people wanting to hold and talk to him (though this picture somehow makes it look like we ditched him).

He's a popular dude, and had a few visitors this week, including a turkey sandwich from Katy that apparently saved Marissa's life.

Asher had a few medical appointments this week.  We met with the feeding team, and were able to tell them about some small successes with breastfeeding.  He'll latch on and suck at times, once taking most of a feeding that way with the help of our childbirth educator, the "Queen of Latch".  That's been an up and down struggle, but feeding has not been a problem, as the team observed.

We also met with his pediatrician, three days after coming home. This is the family doctor we feel very grateful for, who attended a meeting that nurses said they'd never seen a family doctor attend.  Not having seen Asher in two weeks, he looked at Asher and us with a real happiness for what he saw.  We'll treat him like the normal baby he's behaving like until he gives us reason not to, said the doctor.

This was the first of multiple times this week when the "m" word was offered up.  I can't think of anything I'd experienced in my life that qualifies as miraculous.  We've all heard stories of people beating long odds, but I've never had long odds to beat.  To tell the truth, my life has been pretty easy up until now.  I'm a white, middle class male in the US of A.  Miracles have not been required.  In his short life, Asher has done something most will never have the need - or the opportunity - to do.  It seems like he's fought back from the dead.

At the same time, that fight has begun to fade from my consciousness, stored away as something irrelevant to our lives now.  In just a week, it's become so distant.  Did that really happen?  Looking at Asher today, you'd never know what he's been through.  His doctor told us that any differences in him from other babies were so minimal they weren't worth mentioning. 

Though this feels and sounds like a happy ending to Asher's story, that's not exactly the case.  This week marks the beginning of the second act, one that will play out on a timeline much longer than the first.  We won't know what, if any, consequences he'll have from the hypoxia until he begins to pass developmental milestones like walking and talking.  Coming home is not a happy ending, but it is happy.

Homecoming

Time has moved at a glacial pace since Asher was born.  Days have been weeks in this world, and our time in transition was no exception.  After only 24 hours, it felt as if we were never going home.  The spot on our room's whiteboard for "Possible discharge date" remained blank.

On Saturday, one of our favorite nurses who knows us well, came to our room and gently kicked us out.  She reasoned that Asher was ready to go home, has been ready for days, and only needed to hear that his parents were ready.

I felt very ready, but Marissa was understandably nervous at the thought of having him home by ourselves.  We'd become accustomed to the safety of the hospital, knowing that if anything went wrong, he would be taken care of.  Chances are slim that anything like that would happen, but they were slim the day he was born, too.

Still, as our nurse put it, it was finally time for us to go start our family.  In transition, we got in the rhythm of feeding, pumping, changing and sleeping.  We worked on breastfeeding, which was difficult and still needs a lot of work, but we made some small steps in the right direction.  Before we left, we watched a few NICU videos on topics like baby CPR, which didn't help Marissa's anxiety on Sunday.  I thought she might hyperventilate as we loaded him into his car seat, but we all made it into the driveway in one piece.

Coming home seems to have brought Asher out of his shell.  Maybe in NICU he was just shy, but no longer.

At least he feels comfortable telling us how he really feels.  I think he also feels more comfortable in his own clothes.

"Baby, I got your money"

The last day has felt oddly normal.  Asher cries when he's hungry, messy, or gassy.  He makes cute little noises and faces.  I change diapers, I clean, I warm bottles, and I do it all over again like so many other parents.  Life has been so abnormal for the past four weeks that now, with things the way they should be, I feel a little out of place.  Being calm and stationary have become foreign to me.

At the beginning, I remember feeling like I was living someone else's bad dream of a life.  The first days were an out-of-body experience.  Slowly, I came back into my body, and began to live that dream.  It became lucid.  Yesterday, when we pulled in the driveway after four weeks, I woke up, though once again not to the life I remember.  It's been a strange start to parenthood, one that at times has left me feeling robbed of the experience.  At least now, it feels like we've truly started.

"Dramatic improvement"

A lot has happened in the last few days, so much that it's become harder to post regular updates.

On Thursday morning, we spoke to Asher's neurologist for the first time over the phone.  He'd been on vacation and hadn't seen Asher in the last week.  Visiting the NICU after his return, the doctor told Marissa that, at first, he thought he had the wrong baby.  Asher was unrecognizable to him.  He shared that he was glad he didn't attend the meeting that had been so difficult for us, since he was very pessimistic at the time and would have only added to the already overwhelming negativity.

The neurologist discussed with us Asher's second EEG.  Results from the first of these tests had created the sense of pessimism in that team meeting.  That EEG had been taken with Asher's phenobarbital levels very high, probably around fifty, whereas this test was taken with a level of seven.  In the neurologists' words, Asher's new EEG showed a "dramatic improvement".  While it was not completely normal, the doctor sounded very pleased with the results and optimistic for his future.  He made us no promises, and emphasized that only time will tell how things such as Asher's IQ will develop, but he confirmed what we were already starting to believe.  The worst case scenario for Asher is very unlikely.

Clearly, this was wonderful for us to hear from the closest thing we have to a crystal ball.  At the same time, anyone who's seen Asher in the last few days could have seen how much he's improved, so the doctor's words felt more like an official validation of what we already knew.  Later that day, we went back and looked at some of the videos from Asher's first week.

At the time, we were just thrilled to touch and hold him.  I remember enjoying the feeling of his limp arms draped across my stomach, even as I knew it was a symptom of his problems.  Today, I watch these videos and my heart sinks.  They sadden me, though they might not if Asher wasn't now behaving like this:

Our doctor from the palliative care team, the one who'd made sure to inject some optimism in that otherwise awful meeting, left a voicemail for Marissa today.  He described what he's observed in Asher as "incredible", and offered him as an example of the importance of maintaining hope in the face of odds that seem hopeless.

*****

On Thursday, the NICU called to say they had a room available for us to start the process Asher has been healthy enough to start for days now - transition.  As I write, we're starting our second night staying in a hospital room, the three of us together, with the goal of having us finally take the lead in his care.  As of now, we haven't been given a discharge date.  A few days ago, Asher's nurse thought we'd only be in transition a day or two, though given that we've been here now for 24 hours with no word, that seems unlikely.

Transition had seemed a good opportunity to work on moving Asher away from the bottle and toward nursing.  I figured we'd have the time and resources, like lactation consultants, available to us to allow us to hit this goal hard.  This was my thinking before I'd seen Asher try to breastfeed.  He's turned, thankfully, into a very squirmy baby, which makes nursing difficult.  Feeding from a bottle is also much easier, and is the only thing he knows.

Really, breastfeeding would benefit Marissa more than Asher.  She pumping every two hours, and because of the the engorgement, sometimes for an hour at a time.  That doesn't leave much time for everything else in her life, including sleep.  With that and everything else she's been through, she's physically and emotionally frayed.  If she were able to breastfeed, she could cut out the pumping, the labeling, the cleaning, the massaging, the hot cloths, the cold cloths, and probably the pain, plus get more time with her son.

At the same time, she's not the first person to go through this.  Painful as it is, it's a normal problem, and in that way a welcome change from the abnormal problems we'd grown used to.

Face

We are the proud parents of one hungry boy.  Yesterday, Asher took 95ml from a bottle from Marissa during the day.  Today, he got as high up to 120.  The feeding team monitored him with a stethoscope and said he sounded great.  Things were going so well that the feeding tube was removed, and he is eating completely on his own.  When I arrived yesterday, he was sleeping, and I saw him for the first time without obstruction from tubes, tape, or wires attached.  Just his beautiful face.

Religion is mostly foreign to me.  After my grandpa died when I was about nine, I stopped going to church.  My dad describes himself as a recovering Catholic, and to this day I can't tell you much about my mom's beliefs beyond the fact that she believes in God.   The idea of God as portrayed in most religious texts has never been one that computes in my mind.

Yet I know what I feel.   A couple of years ago, I was waiting out a heavy downpour in a shelter on the Appalachian Trail, talking to a group of backpackers and trying to keep my dogs from making trouble.  Once the rain dispersed, I left the shelter and hiked to steep section of trail called the Jump Up.  My favorite time to be in the mountains is right after a hard rain, as the humidity clears and collects into fingerling clouds that nestle into the crevices of the land.   Such was the scene as I arrived at the Jump Up that day.

That had been the last time I saw God. A power far greater than me surrounded and enveloped my being on that mountain. Parts of myself that I'd never met before came to the surface. The Earth was giving me a big ole bear hug, and I could have spent the rest of that day in its embrace. I felt whole.

Then, last week, my son looked into my eyes, and it happened all over again.

Contained in that face is the power of something far great than me.  It surrounds me and fills in the gaps.  Like a campfire, I could stare into it for hours, not fully understanding why, watching as it flickers and dances.  Maybe it's love, but it feels like God.

*****

The wires came completely off today, along with diaper and clothes for Asher's first bathing by his dad.  I couldn't resist a picture.

Poor kid got his dad's gut. 

The good news of the day was that Asher can certainly cry.  Unfortunately, discovering this came at the expense of an unsuccessful first attempt at breastfeeding.  I wasn't there, but according to Riss, he wanted to latch on but couldn't quite do it, hence his frustration.  Given that his initial attempt at bottle feeding was also tough, I don't think this should be too surprising.  He may just need practice.  Riss took it hard though. Between the illness, hormones, and desire to get him home, she's been strapped into an emotional roller coaster lately.

Hopefully, starting transition will help her.  We're now on the waiting list, and we've been told that from there it should only be a day or two until we're home.  I hope when transition starts, being together all day for the first time will really help her feel like Asher is hers.  Motherhood came with a beginning that was unfair to her.  Pretty soon, I think we'll get to make up for some of that lost time.

Mother's Day

Marissa hasn't gotten what she really wanted for Mother's Day - relief from her mastitis and thrush.  Nerves have worn thin between us in the last couple days, due in large part to the frustration this is causing.  The impatience to get him home is also building, and Marissa's problems are only slowing this down.  He looks so normal now, it makes me feel like a horse at the end of a ride.  I can see the barn, and I want to run for it.

I'm not the only one who thinks he looks like a changed baby.  His new neonatologist stopped by to echo that view, saying the early reports and what he sees now seem pleasantly incongruent.  Another EEG would be done next week, he said, once Asher's phenobarbital level gets below 10.

The one thing we're still hoping for is crying. Yes, crying.  Find me the parent of another two-week old who wants that.  Today's neonatologist, the nurses, and Asher's grandparents all seem to be less worried about this than me.  He's making other noises, so it's not as if he doesn't have a voice.  We know he feels pain, as in the circumcision, by the look on his face.  He could just be a mellow like we're told his mom was as a baby, or like our dog Jhana, who Riss pointed out barks about twice a year.

If he were going to cry, it seems his circumcision yesterday would have been the best opportunity he's had.  Instead, his mom did all the crying.  Perhaps to help her through, the doctor, who's also Jewish, began humming a song I've heard in synagogues before.  As he hummed and worked, Marissa joined in.  The comfort and the connection between two near-strangers provided by their faith made the event feel like more than a simple medical procedure.

*****

Though Marissa didn't get what she wanted for Mother's Day, my mom got the only thing she hoped for.

She's the last of the grandparents to meet him, which I think was quietly killing her.  However, she's also the first person outside his parents and the nurses to hold him.  It seems like she's been waiting to be a grandma since I made her a mom back in 1982. As a child, I remember her being very protective over my reproductive parts. Her fear of having no grandchildren was apparent every time I got unspeakable poison ivy or was hit in the groin with a soccer ball.  That fear must have felt like it was nearly realized the day Asher was born.  She admitted she was nervous to meet him, not knowing entirely what to expect when she saw him.  By the time she left, I think she felt very happy and as hopeful as Asher's parents are.