Yin and Yang

Today started about as rough emotionally as yesterday ended, with lots of thoughts and feelings left over.  I began to question my plan to return to work today, but after saying goodbye to Riss' parents, I decided to give it a shot.  This was my first attempt at trying to integrate my old life into my new identity.

The day went well, thanks in large part to the caring people around me at the high school.  Slowly, I began to feel like a therapist again, and got some good practice at telling kids what had happened.  I didn't feel I could hide it from my kids, many of whom were very excited for the baby, so I decided to be up front.  The day ended with the client who had been very excited and who I knew would take it hard, but who processed it well.  A good day's work was done, and my head had cleared a great deal from the day prior.

On the way to the hospital, I got a list of good news from Riss.  The physical therapist explained why my family and many of you have been saying - not making eye contact is normal.  In fact, in Asher's case, it's probably a sign we're overstimulating him.  I think I'd have a hard time empathizing with any newborn, let alone one who's been though what our son has.  It's easy to forget that just opening his eyes, being stroked, or hearing us talk can be exhausting for him.  Looking away from us might just be his way of saying "Dude, back off."

We're going to lay off the oral feeding for a few days, giving the sedatives more time to work their way out of his system.  Hopefully, he'll be able to latch on better then.  I have to wonder how much of this is a break for Asher, and how much it's a break for his parents.

Physical therapy went well for him, and the therapist felt Asher was responding to the interventions.  He didn't have a single seizure today that we could see.  The nurse swears that, ever so briefly, she heard him cry.

Best of all, our geneticist had ensured that Marissa and I are not related.  You can imagine my relief.

Small things gave me happiness today.  I took Asher's temperature under his armpit.  He didn't like it, and let me know by fighting it, which I liked.  Asher has poor muscle tone - that is, he's floppy.  Feeling him tense up is a welcome change.  I also felt like there was progress in his sucking response.  Holding a wet cloth in his mouth to wipe of his spit, he quickly began sucking.  While that's good, it's only half of the equation.  He also needs to swallow.

As with the eye contact, we're still learning Asher's language.  While Marissa held him today, he began moving his head around, making us wonder if he was uncomfortable.  I was ready to put him back in the bed, not wanting to overstimulate him.  With our nurse's help, though, we soon figured out he was rooting.  Mom's producing a lot of food, probably enough to feed the entire NICU, and Asher could smell it.  Since it's an involuntary, instinctual response, it gave us hope that this part of his brain is still functioning.

He's very different depending on whether it's Marissa or me holding him.  On her, he's active, and has tended to stay awake the entire time.  Mom's exciting.  With me, though, as long as he's comfortable, he's more relaxed.  Today, he quickly fell asleep on my chest.  I was right there with him.

The last two days have been an exercise in managing expectations.  Hope is so necessary in this journey, yet within it lies the seed of something destructive.  Left to grow out of control, it can come crashing back down on us.  When that happened yesterday, it was hard to see the hopeful things that were still left in front of us.

Our nurse put it best.  Asher didn't have a bad day - we did.  As I felt myself getting too high again today, I asked her to list some things that might happen on a bad day for him.  He might not handle the milk well.  He might not swallow.  Seizures could come back.  He will have bad days, she said.  Today was not one of them.

Reality check

After two good days, I suppose it was time for a reality check.

The day started well, still riding on the first two days of holding Asher and the hope of continued improvement.  I called Asher's nurse for an update, and was greeting by more hope.  Today, we'd try to start feeding orally.  This is the factor that most affects when we will be able to bring him home.  She said that his oxygen levels had needed to be increased, but she spun this into gold, noting that he seemed to need less oxygen when we're near him.

More encouraging, the nurse reported that Asher had his eyes open most of the morning, looking around.  This being one of the things we'd been hoping for the most, I hung up and got us moving toward the hospital.

After spending time nuzzling and changing Asher's diapers, we left our boy for a conference room filled with doctors, case manager, a chaplain, and our family.  Yesterday, Asher had an EEG, measuring neural activity, and an MRI, which took a picture of his physical brain.  The results would give this team of talented people direction in how to proceed.

While there were some improvements, Asher's brain activity is still much lower than you'd expect in a normal brain.  The somber tone of the doctor told us what this meant in his eyes.  His MRI was better than the EEG, signaling there might still be room for improvement, though this also showed physical damage to Asher's basal ganglia, thalami, and "white matter".  On Sunday, the doctor had said possibilities range from Asher showing few or no effects to being severely physically and mentally disabled.  Today, he narrowed that range to between moderately and severely disabled.

My heart retreated into itself.  It felt like a sentencing.  After a long dialogue of questions and answers, one doctor must have had enough of the cloud opposite of him at the table, and began offering us reasons for hope.  The MRI was better than expected.  There is still sedative in Asher's system that might depress his EEG.  Newborn brains are very plastic, and can recover from things other brains can't.

The wave of the last two days had crested with the morning's hopeful phone call, and by the end of the meeting it had crashed on top of us.  We pulled ourselves back out to Asher's bedside and tried to gather some excitement for a possible feeding.  A bottle of breast milk in hand, Marissa gave Asher his first taste of the best food a mother can give.

Like so many experiences of the past week, though, this ended ambiguously.  Asher tried so hard to suck at times, but couldn't get enough of a latch on the bottle to take in much milk.  We resorted to Plan B - a feeding tube through his nose and into his stomach - and will try the bottle again tomorrow.

Then came time to hold Asher for the third day.  When the nurse picked him up to hand him to Mom, his eyes began to open, and we began to hope for some quality bonding time.  As the holding went on, though, something felt wrong.  Asher wasn't making eye contact with his mom.  He seemed distant, searching with his eyes but unable to connect.

My mind began to slip back into the place that's been so dark for me this past week - the future.  I wrote this week that what I want most is a relationship with my son.  Marissa echoed this.  Eyes open, we had what felt like our first opportunity to connect with our son, and we were denied.

I think I began to lose it first, but really Marissa and I crashed at the same time.  Like most supportive couples, when one of us is shaken, the other is the rock.  Even in the early days of Asher's story, aided by exhaustion, Marissa was my emotional rock.  I don't think we've ever had a harder time finding the rock than we did today.

Then a terrible thought came through my mind.  I didn't want to hold him.  Many things have happened this week that I never thought possible, so in that way this was nothing new.  But it hurt to feel this way.  I knew how it was hurting Marissa, and could see how it felt this was getting us further from what we want most - that relationship.  Marissa and the nurse could see my hesitation when they asked, so they took the pressure off by offering put his head under my chin.

I held him, but I couldn't help but try to engage him.  Somehow, it was less painful for me when I was denied than Marissa.  Still, perhaps because of the emotional exhaustion, the holding today felt awkward, like a middle school dance.  I was worried about him being uncomfortable, and returned him to his bed before I had to.

There's a Mother Teresa quotation on the wall leading into the Mission NICU:  "Be faithful in small things because it is in them that your strength lies."  A phone call to my family reminded me that there were plenty of good, small things that happened today.  His eyes were open for hours.  There was almost no seizure activity.  The MRI was... not terrible.  But today, one small phrase - "moderate to severe" - started us down a path that negated many small things.  Tomorrow, we'll gather our strength.

"My name is Asher..."

"... I come from the future."

(hearing and vision test)

The one where I say thank you

Today feels like it will be the least eventful day yet, though not for Asher.  Another EEG is on the schedule, as well as an MRI, which requires a parade of Asher's cords, tubes, and machinery through the hospital.  The former will get a post-test of Asher's neural activity after the hypothermia treatment.  Sedatives will still interfere with getting a pure reading, but we won't have the cooling pad confounding things.  The MRI will provide a picture of the brain and its structure.  It will also look for signs of a stroke prior to birth, though the neonatologist is not expecting this to be the case.  Damage from a stroke is typically localized in the brain.  It's believed Asher's "insult" caused more widespread damage.

A call to the NICU told us he's tolerating the warming well, with decreased seizure activity from yesterday.  He's also off of his blood pressure medication now, another positive.  He had seemed to be growing rapidly, which we really liked, but it turns out a lot of that was water he's retained.  He was given a diuretic, and I'm happy to report my son took a massive dump.  Four ounces.  For those of you scoring at home, that's a small hamburger in his pants.

For us, it seems there's little to do at the hospital other than the very important job of being and bonding with him.  We're both very excited to hold him again today.  We've spent another morning taking care of business at home like worrying about insurance and cleaning.  One order of business should be something that I don't feel has been done adequately, though that might be because of its impossibility.

Even before Asher's birth, we'd felt so much love and excitement coming in from the world around us.  When our feelings turned to shock, fear, and pain, I felt the world shake with us.

I work a lot of kids and families who've been through traumatic events.  There are three well accepted needs of a person in order to recover from an event like this: safety, mourning, and re-connection.  A person must re-establish a sense that they (and those they love) are safe; they must mentally process the event in their own way; and they must connect with the world around them.

As I watch myself and Marissa go through these stages, I'm struck by how critical others are in the process.  Amid the shock and horror of watching my child swarmed with doctors and nurses, intubated, and rushed to the NICU, I also felt as safe as a person reasonably could.  I mourned with Brad by my side in those first hours.  And I've reconnected with the world through your visits, texts, calls, Facebook messages, and the almost 8000 (!) views of my curiously long blog postings.

Keep clicking refresh everyone, it feels good.

There is no healing without you.  I do feel like we are coping as well as can be expected, and that is a direct reflection of the tsunami of love and support we've been washed in.  I would love to respond to each and everyone one of you individually, but you've been far too loving for that to be possible.  The tsunami has been too big.  Just know that we have read every one of your messages, listened to each voicemail, received every gift, and enjoyed every visit.  Each one has given us what we need most - hope.

From the bottom of my heart and soul, I say thank you, thank you, thank you a million times.


Thank you.

A bushel and peck (or, Thawing our babycicle)

Our first night at home went well, and gave us some much needed quality rest.  As good as Mission was to us, there were a lot of things - visits from nurses, social workers, nutritionists, more nurses - that got in the way of being with Asher.  In some ways, even though we're 15 minutes and not one floor away from him, it might be easier to see him.  

We managed to lounge around most of the morning, then made it to Asher in the afternoon.  Brad joined us there, and I'm glad he got to see Asher in a better state than day one.  Asher's nurse told us they'd been slowly warming him since 8am, and that once he got to 36.5 degrees Celsius, we'd be able to hold him for the first time.  

In the meantime, she delivered the day's news, which was small to some but important to us.  The neonatologist had previously told guessed that there was a 50/50 chance Asher would come home with a feeding tube, meaning he would not be able to eat on his own.  Nurse Tacy offered us some hope, saying that when she put her finger in Asher's mouth, she MIGHT have felt the beginning of a swallowing reflex.  Very unscientific, but hopeful nonetheless.

Partly because of all the sedatives to reduce Asher's seizures, he's been mostly silent so far.  It feels like we're the first parents who, days into parenthood, desperately want to hear our baby cry.  The sedatives have also kept him pretty inactive.  The first couple days, we were just happy to see him moving his arms and legs on his own.  He also hasn't shown much movement in his face or mouth.  So today we were very excited by things like this:

Marissa and Asher had a few routines established well before birth.  One was reading Dr. Seuss books, especially The Foot Book.  Babies love hearing anything rhythmic, even before birth, and will sometimes respond to those same rhythms after birth.  I can still hear Marissa reading, "Left foot, right foot, feet feet feet.  How many different feet you'll meet".  But the most consistent rhythm came from a song.  At least once a day during the entire pregnancy, Marissa would sing "A Bushel and a Peck" to Asher.  

Anything can happen once.  Twice can be a coincidence.  But three times is a pattern.  I've seen three times now where Asher has become much more active when Marissa sings their song to him.  This has also happened even through high levels of sedatives.  I'm starting to believe he responds so strongly to the song, he fights through the drugs to connect with his mother.  Yesterday, he opened his eyes for the song.  Today, he practically got up and danced.  

As he was being warmed, seizure activity increased.  This was always a possibility during the warming process.  There are some points in the videos above where you can see what his small seizures look like - look for the rhythmic chin quiver.  These seizures were bigger,  involving more of his body, so the neonatologist gave the go ahead for another sedative to calm him.

By 5:30, Asher had been thawed, and was ready to meet his parents.  The cords and tubes presented an obstacle, but our nurse did a great job of making this important experience easy and comfortable.  Below is the video of Marissa holding Asher for the first time:

As time goes on in these videos, Asher is receiving more and more sedative.  Still, it feels like Asher fights through the medication to talk to his mom.  Once he changed position, getting more skin to skin contact, he really got vocal:

Today was a special day for us.

After Marissa was done, it was my turn.  We were creeping up on 6:30, which is one of the two times during the day when no visitors are allowed.  But Tracy, knowing how important this was to us, drew the curtains around us and let us stay for some extra time.  

Oxytocin is the body's "love chemical", giving you a warm, fuzzy feeling.  Lots of things get it pumping, but nothing so much as holding a baby.  If I look a little stoned below, I think it's because my Oxytocin levels are near lethal.  This was one of the most relaxing moments of my life, to the point I stopped answering Marissa's questions.

We left lovedrunk.  Gerry and Joel had a wonderful dinner waiting for us.  It felt like a celebration.

Forsythia

A few weeks ago Marissa randomly came home from Aldi with with a forsythia bush.  It was just a tiny little start in a plastic bag, only cost a couple of bucks, and she was excited about how they'd look in the yard.  Problem was, I was busy with other things at the time - the vegetable garden, the patio, the lawn.  So I neglected it.  I think the best use it got was being dragged out into the yard by Buckley and used as a chew toy.  

A week or so passed, and I found the start out in the yard, the victim of Buckley's love.  As the dirt limply fell away from what used to be to roots, the plant looked like little more than a dead stick.  Marissa and I had a "discussion" about when and where to buy plants, having a plan for them, and so on.  Feeling slightly guilty about my neglect, I found an old plastic pot and tossed some dirt in there with the plant, just to see what would happen.  I didn't have much hope for it, though, and didn't give the plant much more thought, let alone water.

Weeks later we're home from the hospital.  I wake up on our first morning here, with Joel and Gerry asleep and Marissa quietly pumping.  There are pepper plants outside that need planting, and that I hope have survived their own neglect over the weekend.  Outside, I find Andrea or Keith had cared for them, so I start working.

When I walk by the left-for-dead forsythia, I stop.  It's mostly still a stick in a pot, a sad sight, looking like it could an artist's commentary on the state of society.  Except for the leaves.  At the top of this stick in a pot, fresh, light green little leaves are sprouting.  Despite the neglect and abuse it had been through, not getting nourished in nearly the way it was meant to, this little guy is growing.

Who knows what this bush will look like in a week, a month, a year?  It might do as I would have predicted weeks ago, dying off.  Maybe it will miraculously bloom into a glorious forsythia, just what we thought we were getting.  Or perhaps it will be somewhere in between.  With some effort, it might grow into something that we weren't expecting but that, because of that effort, I will be so much more proud of.

It's amazing at times like these how the mind finds meaning in the world around us.  I'm going outside now to water the forsythia.

Baby steps

A little more progress today.  As I mentioned before, Asher opened both eyes for the first time, and his eyes continue to show increased responsiveness to light.  Considering this was the first major concern about his neurological function, I really like hearing this.

The doctors will do an MRI later this week to examine his brain.  One thing they'll look for is evidence of a stroke.  Dr. Thingvoll doesn't believe this happened, so we might be scratching off one explanation that I can actually understand.  He also said they'd be looking at his "brain structure", which sounds like it has the potential to hold good or bad news.  One thing we're trying to keep in mind is the resiliency of a baby's brain.  While an adult can take a blow to the head and never be the same, baby's brains have a greater ability to heal.

We met with met with another nice doctor from a palliative care team.  To most people, palliative care means "end of life", but not in this case.  They're trying to approach this as a team, and are going to organize a family meeting with doctors, social workers, and even the rabbi who was going to do Asher's bris.  That doctor, who formerly worked on an ICU, is concerned about the ongoing seizures and is going to talk with the neonatologists about more aggressive treatments.  I'm grateful we have some competing opinions going, and that they're being openly discussed with us.

We sat and talked about what we understand about Asher's situation, and then talked about our hopes for him.  It was a difficult conversation for us both, but an important one.  Marissa talked about wanting as normal a life as possible for him, playing and getting in trouble.  I didn't say much.  At first, I wasn't sure what I was allowed to hope for.  As I thought, I decided my hope is something I would have taken for granted just days ago.  I want a relationship with him.  I want him to understand I love him.  If I can get that, I know I can be happy.

Marissa was discharged tonight, and we're home now.  It feels like we're starting a new phase of this journey, one that might involve wanting to be at the hospital more than we can be.  They offer some twin beds in the NICU for people to sleep in, but it's not a Holiday Inn, let alone home.

Marissa's parents are here with us, thankfully.  Being the generous people they are, they spent the day deep cleaning our home.  We walked in and were greeted by a kitchen we barely recognized.  Like us, her parents are dealing with this in their own way - keeping busy.  Now that we're home, the ways Marissa and I cope will have to change.  I just hope those changes are effective.