Tuesday, March 19, 2013

What's Wrong with Baby Hayes?

Dearest Blogfans and friends,

I have totally been avoiding you.  Somewhere in between this moment:

and this one:

I began to experience the seedlings of fear and apprehension about Hayes and his development, and I didn't want to talk to anyone about it.  And since these fears were so linked in my mind with Hayes himself, it was really hard to talk to anyone with the 'new baby' subject off-limits.  I withdrew from friends, I haven't blogged.  I didn't even share my fears with my husband until I couldn't contain them anymore and bombarded him in the middle of a school day with a torrent of terrified text messages.

While deciding how to write this post, I hesitated upon an approach: Ugly and honest?  Purely medical jargon?  Spiritual?  Optimistic?  We're going with a mix... all of the above.  For the past twenty-four hours I feel like Koby and I have been choosing a mindset (because that is the singular beautiful thing in one's own control) as if a couple might shop around for a new car - considering all the angles, for a new car can either bring a family comfort or stress; it will keep them moving against all odds or leave its passengers broken down in unfamiliar territory.

Back to my fear seedlings, their origin.  This voice is the dramatic, emotions-based voice: I was afraid there was something we'd be discovering about Hayes from the moment I held him for the first time.  Perhaps it was the residual feelings of paranoia remembered from his first in-depth ultrasound when the doctors found choroid plexus cysts.  Maybe it was a mother's intuition, but it probably wasn't.  Maybe it was pure pessimism.  But in any case, instead of the peace and fulfillment I thought I'd feel holding him for the first time, I felt panic.  Koby left the room to get me food and I frantically began searching every inch of Hayes, looking for the something that was making me feel this way.  I never told Koby about this moment of terror I had (until recently) because I was embarrassed - who acts like that in the first moments of her son's life?

But Koby came back and I smiled, we left the hospital.  Hayes grew, and the feelings went away for the most part.

Until he turned about two months old.  Hayes was doing a few things that concerned me - his eyes were crossing more than I remembered Knox's ever doing, and seemed to be crossing differently to me.  Knox's seemed to cross when his little eyes were tired of doing all the new things they were trying out - when Hayes' eyes crossed it seemed like his preferred M.O.  At Hayes' two months check up the doctor asked if he was tracking objects with his eyes, and I said 'yes' without thinking.  As I drove home I began to think, He doesn't track objects very often at all, I don't know why I said that.

When I took his two month pictures, I felt like he should have been holding his head up better.  I referred back to Knox's pictures and thought Knox seemed tighter, more rigid, whereas Hayes wasn't holding himself up at all. 

But if there is anything parents, doctors, friends, strangers off the street, etc. will tell you it is OH MY GOSH NEVER COMPARE SIBLINGS TO EACH OTHER DON'T START DON'T DO IT.  So I ignored it.  Sort of.  Not really. 

The fear really took a step up at three months.

Hayes' floppiness seemed to increase, or maybe it was just all the more noticeable as he grew in size and weight, but not in tone.  I kept pleading with my inner demons, appeasing them with the thoughts that Hayes would miraculously catch up with other babies and suddenly begin to hold his head up in time for the four month milestone marker that was looming ahead.  He'd start to make eye contact and track objects and reach for things and all the rest...

But he didn't.  And I began to exist in a state of what I'd call functioning panic.  (This is still the Emotional Voice speaking.  We'll get to the much calmer Medical Voice in a minute.)  A few days before his four month birthday, it suddenly hit me: Hayes wasn't going to hold his head up, he wasn't going to catch up.  He was going to miss this milestone and I was a mom who was going to freak out about it.  I was going to be the one who insisted something was wrong.  And so I brought Koby into my little circus of fear and Googling.  (Curse you, Google.)

And so I scheduled Hayes' four months check up with the doctor and began making a list of the concerns I'd be ready with when the "And is there anything you're concerned about at this point in time regarding Hayes' development" question came.  Literally, a list.  And I hated it so much, this list lying there covered in things Hayes couldn't or wouldn't do, that I started a 'Can Do' list on the back.

When the appointment came I was too embarrassed (and didn't want to mispronounce) the things I had already diagnosed Hayes with courtesy of Google: hypotonia (low muscle tone) and strabismus (crossed eyes), so I just calmly read off the more pressing worries from the list.  More important that day was addressing Hayes' RSV, which is a virus that attacks the respiratory system.  Our doctor didn't seem concerned about Hayes' inability to hold his head up (even though in my head I'm thinking HYPOTONIA! LOW MUSCLE TONE!) but did refer us to a Pediatric Eye Specialist in Fort Worth to check out his vision.  Maybe the doctor didn't want to immediately jump to the most dramatic cause behind Hayes' symptoms, like I had done.  For a few days I (and every one else who knew what we were doing at this point) felt better, but then the old demons came creeping up behind me.

It's funny, how we try and talk people out of their feelings.  Since yesterday I've marveled at it - I don't think it's wrong, necessarily, I just think it's human.  We tell babies "Don't cry, don't be sad," we tell toddlers "You're okay," and we tell ourselves and each other a whole host of things to persuade us apart from our feelings.  After the routine check up with our pediatrician, Koby felt calm, but I was worried.  And I tried to get him on board with my feelings.  I don't think I did it on purpose, I just did it.  Since yesterday, I've been the (relatively) calm one, and Koby felt the same disconnect I did - Why can't she just feel the way I'm feeling about this?  How can she think these things, look at it this way?  I know I often felt like I wanted to shout in peoples' faces "This IS a big deal, I DON'T think it's going to be 'okay'!"  I'm left to wonder, do we ever react the way we should?  Is there a certain set of feelings we should feel under certain circumstances?  Or are those feelings so transient, fickle, and dependent upon such a variety of factors that the only thing that matters is how we handle those feelings?  (Parable of the two sons, anyone?  We'll get back to that in the Spiritual Voice portion of our program.)

Enter: Medical Voice.  Yesterday was our appointment in Fort Worth with the Pediatric Vision Specialists associated with Cook's Children's Health Care System.  I was excited and nervous in equal measure.  Maybe not equal measure.  But more excited than one should be about having to take their infant in to get his vision checked.  I was ready to get the ball rolling - ready to considerably fine-tune my Google searches.  Ready to begin understanding why my son won't hold his head up well, won't look at things. 

I went half hoping that they'd fit him with a pair of baby eye goggles, maybe patch an eye, and we'd see miraculous and immediate improvements.  I think at one point I really sort of believed that would happen.  But when the doctor diagnosed him with Optic Nerve Hypoplasia, I don't think it shocked me as much as he might have thought it would.  Indeed, it's a bombshell, but when the mother has already considered a thousand times there might be something wrong with her son's brain, it isn't the blindsiding force it could be otherwise.

Here is what I can tell you in my own words about ONH from just over 24 hours of research.  (Bless you, Google.)  Optic Nerve Hypoplasia (ONH) is a abnormality of the nerve that connects the eyes to the brain.  This condition occurs when the nerve doesn't form correctly during the first few weeks of pregnancy (meaning it is a congenital defect).  There is no known cause, although some prenatal issues could be risk factors.  ONH can affect either or both eyes (usually both) and its effects can range from mild vision loss to zero light perception (total blindness).  Because it's an issue having to do with the brain and more specifically, the middle section of the brain, other neurological disorders can be present including but not limited to, motor function, developmental delays, hormonal issues, mental retardation, and other things.

This is essentially what the doctor told me, plus or minus a few points.  The questions I immediately asked were typical, "Was this a result of brain trauma or as the brain was developing?" (Brain developing, it's not my fault or anything I did or didn't do, yadda yadda) and "Based on what the nerve looks like now, how much will he be able to see?  If he doesn't improve from this point onward, will he be legally blind?" (We can't tell at this point, wait and see, yadda yadda.)  We're scheduled to have an MRI on April 9 to explore Hayes' brain and see what other, if any, abnormalities or defects are present.  Still to be scheduled is an appointment with a pediatric endocrinologist who will assess his hormonal levels to determine if they are functional or abnormal.  Based on the doctor's appraisal, his ONH seems to mild and judging by the fact that he is thriving, he may not be suffering any hormonal deficiencies at this time.  (Although they may present themselves at any point.) 

Here's what I can tell you in my own words about ONH after my son being diagnosed with it about 24 hours ago: I hate it.  I wrestle with the thought of "This is unfair for my baby".  (Note: these are my Ugly Thoughts, not Koby's.  He won't entertain this one with me, and for that I commend him.)  I wrestle with jealousy - after all, I work with dozens of children whose brains formed perfectly during the 6th and 12th prenatal weeks.  I  know you always hear stories of these wonderful people afflicted with all sorts of terrible things who are never once heard to ask "Why me?" and I guess those people are all better than me.  To me, it's completely logical to know that no, it's not fair for a baby to have its brain develop incorrectly for apparently no reason whatsoever and thus suffer a range of mild to severe symptoms every day for the rest of his life.  It just sounds juvenile and petty to call something unfair.  And that makes me incredibly angry on Hayes' behalf.  Koby and I haven't even begun to discuss the big, ugly questions like What if Hayes is severely mentally handicapped?  What if we have to pay for costly hormonal injections to give him each night to ward off dangerous and life-threatening hormone deficiencies?  What if he never gets married because of his condition?  We don't even talk about the little things.  What if he can never throw a baseball with us?  What if he never knows what his brother looks like?  What if I can never show him how to write his name?

I won't even get into the guilt of birthing a baby with a congenital brain defect - for all the 'you couldn't have prevented this' comments out there, there will always be the illogical but wholly real nagging feeling in the back of the mind.  Illogical, yes; counter-productive, of course; ever-present, indefinitely. 

You might think less of me after reading all that, but I'm choosing to err on the belief that I'm allowed some ugly, visceral thoughts because I intend upon acting in the right.  Nevertheless, shut up, Ugly Honest Voice. 

To my credit or discredit, depending upon whom you ask, I have always tried to think of things from the 'other side'.  While part of my brain screams "How on earth is it fair that this baby's brain developed abnormally?", the other, logical and Spiritual Voice tells me "Why not this baby over any other?"  My baby, my family, me - we are no better or more protected from these things than any other human on the planet.  What right do I hold that grants me a pain-free, hardship-free life?  In fact, yesterday I found myself thanking God that I had a car to drive to a Pediatric Vision Specialist less than two miles from my home who could diagnose my child on the spot.  I even thanked God for Google, which filled in the gaps left after the five minute conversation I had with the ophthalmologist.  And though we have to wait a month for it, I am genuinely grateful I live in a country where I have access to MRI technology, I have insurance that will (hopefully) cover (some of) it, and amazingly, miraculously, wonderfully, I have a loving husband who will be a encouraging, supportive and Christ-like dad to a child with special needs.  I have friends and family members who are heroically stepping up to help me with my own special needs during this time.  Hayes has a brother who is kind, compassionate, loving, thoughtful and protective of his younger sibling at the age of 20 months old.

And then, I have Hayes.  He is my sweet baby.  Now that I've been enumerating my worries and fears and 'can'ts' about him, can I please tell you about HIM?  He's my happy boy, the patient younger brother who endures Knox's proddings and times of over-helpfulness with a coo and only very occasionally, a quiet cry.  He is so strong and beautiful with his reddish blond hair and dark blue eyes that I cannot believe there are things misfiring under his perfect skull.  His hair might be curly - if not he's definitely going to suffer chronic bedhead with hair growing in so many directions at once.  His one request is to be held at all times, but if you're unable, it's okay.  His favorite is lots of kisses on his cheeks and neck.  He likes milk at room temperature and has been known to spend ten minutes smiling and laughing instead of drinking.  He's big and full of the most delicious baby rolls you could imagine.  He deserves the very best.

Koby and I have been filtering through our thoughts and feelings, sorting out which ones will work and which don't.  We're still choosing which ones will help us operate our mindset like the good family car, steadily moving us forward one day at a time.  I grew up privileged - I never knew what it felt like to be in a family living from paycheck to paycheck.  I never saw a family member battle a disease, depleting their strength and living from day to day.  I've never thrown myself at God's mercy and known what it was like for His joy to be my strength.  I'm sure I thought I did, but this is new.  This season of my life is showing me what that means - how the Lord can be my strength.  The value of the Daily Bread, the Grace that can carry a person when her strength reserves are depleted.  In short, I have never lived day to day in any sense barring the obvious but easily forgettable fragility of my own mortality.  But now I am having to learn what it means, spiritually, economically,  mentally, and otherwise. ( I am speaking for myself, but I think Koby would echo me here.)

We appreciate and covet your prayers for Hayes, but if I seem vague or overly positive or negative at any time that you might talk to me over the coming days/weeks/years, just know it's because I'm tweaking my mindset.  I'll get it right eventually.