Fending off the paparazzi

Asher hit the big time today.  I woke up to find this on the front page of Haywood County's newspaper:

One of our co-workers entered Marissa in a Mother's Day contest on Facebook.  For having the most likes of her pictures, she won the grand prize of an article about her and Asher in today's paper.  Other than the ironically placed article about child hunger (see below) next to Asher, it was a really nice, well written and aptly titled article.

We've had two very important days to finish out this week. During the day yesterday, Asher took five, then ten, then fifteen milliliters of milk from a bottle. The last of these was the first chance I've had to feed him:



After we left yesterday, he decided to blow those numbers out of the water, taking 70 milliliters - an entire feeding. This morning, he first managed thirty, then seventy, then another thirty milliliters for his mom this evening. It seems that Asher likes to eat about as much as his dad does.

I haven't heard this from anyone at the hospital, but at the rate Asher's going, I would not be surprised if he were home toward the end of next week. Maybe that's wishful thinking, but we have been told that the main thing keeping us from beginning our transition is Marissa's pumping pains.  Once that clears up, we'll be able to try moving from the bottle to the real thing.

*****

My sister left last night after spending two days slaving in our kitchen, packing our freezer with squash and sage lasagna, stuffed peppers, and sweet potato shepherd's pie. She also took great care of Marissa, who's been miserable at certain points with mastitis and thrush. At the same time, my dad unexpectedly popped in for a visit yesterday to meet his first grandson. Every now and then, I'll get a call from him that starts something like, "Hey, what are you doing in a couple hours? I'll be flying through Asheville." He's a pilot, so that's a very literal statement, and his job enables him to pop in from all the way from Ohio every so often.

Marlin White is not an emotional creature. I inherited many things from him, but my empathic and emotionally therapeutic abilities were not among of them. He's old school in many ways, whether he's exercising his second amendment rights or sitting at home watching the History Channel in his underwear.

Given this persona, his reaction to Asher's situation has been perhaps the most interesting of anyone in our family. Praise from him needs to be earned, and, like many, he doesn't always know how to approach others going through tough feelings.  This makes messages he's been sending, like the one below, all the more notable:

An experience like this could cause people to grow and change, to do things they hadn't been able to do before. Or, maybe it provides people an opportunity to show sides of themselves that had been there all along.

Hungry man

In the middle of last night, I woke to find Marissa trembling and crying in pain. She's been fighting a case of clogged ducts in her breasts which led to a mastitis infection. If you've never seen seen this, like I hadn't, imagine a really bad bout of the flu or heroin withdrawal, only it doesn't last quite as long. She was hot and cold, soaking our sheets, without much that could help her.

Since we were both up much of the night, I'm drained and can't muster up the energy for a post worthy of how good our day was. In short, I don't think anyone doubts now that Asher will be feeding on his own very soon. He drank from a bottle four times today, including once with me, and took a little more each time. My dad and sister were in town to see all this. Dad also modeled a nipple-less sports bra for us - tune in tomorrow for pictures.

When a baby gets ready to leave the NICU, mom and baby will spend time together in the transition unit getting ready to go home. These are rooms that help moms learn about any special needs the baby might have and to see how the baby responds to a less medical environment. Asher has been doing so well that transitioning was mentioned for the first time today. We might be doing that in the next few days if it weren't for Marissa's infection, but it sounds like this is coming soon regardless.

More to come tomorrow, including pictures and video of Asher taking down a big gulp of milk with me, then begging for more.

Teacher

As the days go by, it's become easy to forget that there are questions about Asher's future abilities.  He looks and acts more normal each day, even with a phenobarbital level that's fifty percent above what's therapeutic.

 Today, he didn't just make eye contact - we practically had a staring contest.   His deep blue eyes opened as wide as ever, and it seemed he was scanning my face as intently as I was scanning his. He would also take time to look around and absorb his environment. As he did, I could see his mind, supposedly damaged beyond repair, processing.

From the department of feeding, Marissa reports Asher showed a gag reflex today. For much of the time I was there, his nasal cannula, already flowing low, was out of his nose because Asher had knocked it out (a good sign in itself). He was breathing just fine without it, and we didn't even bother to fix it while we held him. The IV going into his belly button was taken out last night, and he's now being fed completely by his mom's milk. We were given no word on when a bottle would be tried again, but I'm guessing it will be soon.

Since none of Asher's doctors could attend, the meeting on Friday was postponed. That's fine by me.

I've written before about the sense of community that we've developed and strengthened over the past week and a half. The response of everyone, young and old, with and without kids, has left us speechless. One of the great surprises in this regard has been the sub-community of NICU parents that has come forward to share their stories with us.  Some of the most heartfelt words and kindest offers have come from these parents.   People I've never met have written at length to share their stories.  It's apparent that learning about Asher often takes these parents back to that time in their lives, a time like we're going through now.

No two situations are exactly the same, so these parents are often careful not to compare.  But we all seem to have shared a similar pain and fear.  It's a pain and a fear that I didn't know possible prior to Asher's birth.  One of these fathers, a person I respect a great deal and whose family has been very supportive of us, echoed some of my earliest feelings from this ordeal.  Like me, the father said he initially felt sorry for himself.   I remember in those first days, as I clutched to preconceived notions of what my family should be, among the forest of emotions, I pitied myself.

This father also helped me recall and solidify a thought we had in common, one that signaled the beginning of our recoveries from self-pity.  In his words, he began to believe that his child would be his teacher.  For me, should Asher have special needs, being so close, so inside of this would be completely novel to me.  It would be a completely new way of looking at life, one that scares me less each time my son looks into my eyes.

Power or bliss

Asher was surrounded by a group of very happy nurses when I walked into the NICU this morning.  They informed me I just missed a very exciting 15 minutes.  Two of the women were from the unit's feeding team, and had been testing his ability to suck and swallow.  Not only had they gotten Asher to give a good suck on a finger, but, more importantly, they could hear swallowing both through a stethoscope and with Asher simply laying there in front of them.  When I told them he'd already taken some milk from a bottle, they advised we slow that down, not wanting to make the experience unpleasant for him or risk getting milk in his lungs.

His nurse today worked with him on his second and fourth days on the unit.  She hasn't seen him since then, and seemed pretty amazed at his progress in that time.  I loved listening to her talk about him.  Professionally and personally, she seemed so hopeful for him and so invested in his care.  The look of excitement on her face was one I've seen more and more from the nurses in recent days.  It tells me the progress I'm seeing in Asher isn't just the product of my parental pride.  Others are seeing the same thing.  It's real.

He continued taking small steps in other areas today outside the sucking and swallowing.  He's a little more able to hold his hands up by his face like babies do.  He's tracking things with his eyes and looking when someone says his name (he already knows his name!).  He pooped mustard.

Marissa called me in the afternoon when I'd gone back to work.  Our case manager was asking her about scheduling another team meeting like the one we had last week.  About half way through this conversation, I became aware of how much the idea of this meeting scared me.  The last one, when I was told Asher would likely be "moderately to severely disabled", was the hardest thing I've done in the past week.

Since that point, I've seen nothing but progress, been given nothing but hope.  It's no wonder I found myself saying I didn't see the point in such a meeting.  Part of me would rather live only with the hope of what's in front of me rather than understanding the facts of our situation.  Knowledge is power, but ignorance is bliss.

We're meeting Friday morning.

A Letter

Dear Asher,

First, let me say I'm very happy for you and all the progress you're making. No one can deny that you're a fighter. You're cute, charming, and an inspiration to hundreds of people. Everyone's pulling for you, including me (just don't tell my boss).

However, I must say that you're making my job quite difficult. Your consistent, daily progress, giving nothing but hope to those around you, makes it very hard for me to argue my case. For example: who would believe that there is reason for pessimism when, just this morning, you drank FROM A BOTTLE nearly two days ahead of schedule.

I don't think I'm asking for much, only that people consider all sides of the argument. Even if you don't regress, just slow down a bit. Take a break. You've earned it. Plus, it just might save my job.

Regards,
The Devil's Advocate

"Gale?... He smiled at me."

I think I fell in love with my son today.

I've loved him since before he was born, or at least the idea of him.   Today, though, he really became a person to me when he laid on my chest and looked up at me.  I wanted to crawl inside of him.  Everything about that face - the innocent eyes, soft cheeks, the lips that I will claim with pride, thank you very much - is perfect.

I thought I'd need him to say "Hi, dad" to feel like I had a relationship with him, the one thing I wanted more than anything.  Turns out I just needed his eyes.  And for that, all Asher needed was to get his phenobarbital level down to double the therapeutic amount.  Every day, he looks a little less doped, and a little more like your average baby.

Which he's not.  On good days like this, I have to remind myself of that.  I start imagining a life with him like I'd imagined two weeks ago.  It's hard not to when those eyes look into yours.

It's also hard when you see nothing but progress.  Other than the wires, two big things that would tell your average baby ignoramus, like myself, that something's a little off about him.  First, he's floppy and slow moving, even by newborn standards.  He doesn't grab your finger like other babies, and he has a hard time holding his arms up next to himself when he lays on you.  Second, he still doesn't cry.  It will be interesting to see how much these things change as the sedative levels continue to drop.

He's starting to poop after every meal, just like a baby should.  After his tube feeding today, my hand supporting his butt could feel the rumble in his pants.  As exciting as poop can be, there's nothing like baby poop, especially from a baby that hasn't been doing it.

Tuesday might be the start of a big test - feeding orally.  Everyone of us have secretions like saliva and mucus that get into our throats.  A healthy person will simply swallow these secretions without thinking about it.  For most of the past week, those secretions have stayed in Asher's throat, which you could hear when he breathed.  The fear is that this is because the part of the brain responsible for involuntary actions, like swallowing, is damaged.  In the last two days, though, he's been breathing quietly, giving me hope that he's started swallowing.  If he can swallow saliva, maybe he can swallow milk.

In closing tonight, I'd like to acknowledge the prevalence of pictures of my chest on this blog.  It's certainly been prevalent in Asher's short life, as evidenced by the hairs we have to pick off of him every day.  Some have said that they've seen my nipples more than any man outside marriage.  To that, all I can say is, you're welcome.

Warmth

Today was quiet and relaxing.  There seem to be fewer people in the NICU.  Asher slept most of the day, opening his eyes only a few times briefly.  Some positives of the day include Asher handling increased amounts of milk through the feeding tube, having fewer phlegmy sounds in his chest, yawning, stretching, and all around cuteness.  Much of our time was spent visiting and laughing with friends we feel very grateful for.

As I type with him on my stomach, I feel like he's given me his first, honest-to-goodness eye contact.  We've tried to be quieter and stay out of his face today, and it seems to be working.  At work, I sometimes use an analogy of getting a cat to come to you from under a porch.  The harder you try, the louder and scarier you get, and the further the cat gets from you.  We wanted so badly to interact with Asher this week that at times I think we scared him away.  Backing off by talking to and touching him less feels like it's helped lure him out a bit.

There was no big news on tests or milestones today.  Dr. Allen, Asher's geneticist, stopped by to discuss some things that he'd be looking in his testing, though so far nothing has been found to explain the "why" of Asher's condition.  Genetic testing is improving rapidly, and might someday be able to provide answers, but not now.

This is the most unexpected and important thing that's ever happened to my family.  Yet somehow, a need to explain why or how this happened has escaped me.  I'm glad for that, as it's something we'll likely never know, though that doesn't always keep people from trying to explain the unexplainable.  What's hard for me is not the "why" of the past, but the "what" of the future. Both seem unlikely to be answered.

I wondered today if Asher would ever have a girlfriend.

Our nurse mentioned that she had been in the NICU the day I came upstairs with Asher.  I think I talked to her, but she was only vaguely familiar to me. As she described what I looked like at the time, and I reflected on what those first hours were like.  Devastation.  Dissociation.  Questions to her about that morning that I couldn't quite form went unasked.

I remember I was freezing, and confused as to whether it was the room or me that was cold.  As Brad sat with me, I told him they'd get him a blanket, like they did for me, but he didn't need it.  Tonight, I'm sitting comfortably in nearly the same spot, shirt open, Asher on my chest.  We're both warm.