Life returns to normal

With the surgery over, and the only real issue being eye drops for a couple of weeks, life returned to our cocoon version of normal. Some friends threw a shower for Andrea on the following weekend, and I was so grateful. It seems weird to say, but I kind of feel like Andrea got ripped off. An atypical pregnancy, complete with scary PPROM and 10 weeks bed rest. An atypical birth, including C-section, delay in getting to hold him, and two weeks in the NICU. Then the week from hell. Then the surgery. Multiple medical appointments each week. The end of breastfeeding. When did she get to have the FUN part of being a new mom?

The shower was a small milestone to me — it was another step in saying, “Yes, it’s atypical, but we will STILL do normal stuff around it.” It was kind of our new unspoken resolve. Yes, there was other stuff going on, but it wouldn’t define all of our life. It couldn’t, we wouldn’t let it. No matter what.

September dawned and I finally completed my first full week of work since Jacob was born, without having to go to appointments or rush home for an emergency. Jacob got back on the regular growth chart, reaching the 10th percentile. We stopped having to see the dietician, which hadn’t been that useful most of the time anyway. He wasn’t comfortable on his stomach, but he held his head up at 3-4 months, managed to roll onto his side. Normal stuff.

I was dreading the end of the month though. Four weeks after Jacob’s surgery, he got his first pair of glasses and lenses. By then, I knew a lot more about options and expectations. I researched and talked to people online and offline about post-surgery options for vision. It’s a long complicated set of parameters, but it can be summarized fairly simply. Most of what controls how well you see is basic physics of light refraction and angles.

1. Your best option to focus light on the back of your eye is your natural lens. It’s at the perfect distance to do that. Consider it a 10 on a scale of 10, if it’s an option. But Jacob’s lens, like all kids with cataracts, had to be removed. 
2. The next best option is probably an inter-ocular lens, a permanent implant. Probably an 9/10 rating because it comes as close as possible to the same location as the natural lens. But IOLs are permanent and lock in a specific prescription, so better to wait as long as possible to do that surgery. Some countries do it earlier, most of Canada recommends age 7+ unless there are other issues.
3. The third option is contact lenses, and based on physics, probably an 8/10 rating. It sits right on top of where the lens was, so only off by parts of a millimeter. The challenge of course is insertion and removal, particularly for those who can’t do it themselves. Choices abound for styles, etc., but basically come down to hard or soft, with soft ones generally healthier for the eyes. More permeable, more light, less rigid, better able to fit to the eye in most cases.
4. The fourth option is glasses, but that’s a good cm away from the lens, and the farther away, the thicker the lens needs to be to focus and direct the light to the back of the eye. It means more aggressive physics of light, and probably a 6/10 rating. Ease of use is the obvious benefit, but you don’t see as well. Most of your peripheral vision can be lost with aphakic glasses.
5. Finally, you can also do nothing. A part of my soul dies just thinking about this option, but for some kids around the world, it’s the only option. Some can’t even have the surgery, due to cost, or sometimes just because it isn’t diagnosed early. The bottomline is if the eye and brain don’t learn to work together in the first two years, optimal seeing isn’t even an option anymore. Lots of kids who are adopted from abroad come with medical issues, and cataracts are common. Jacob won the birth lottery in many ways, as most of his issues would have either resulted in early death or ongoing blindness in some countries. A reality check sometimes.

So the natural lens option was gone. IOLs were a distant possibility. He would have glasses to wear when he didn’t have his contacts in, but contacts would be the main tool to help his brain learn to see. So we would have to insert contacts. In a baby.

And yes, that is about as horrible as it sounds. Jacob’s eyes were relatively normal, and so he could wear SilSoft lenses. Some aphakic kids have corneas so steep that they can’t wear SilSofts, or need too much correction for this option, but Jacob was right in the normal range. Some people put them in and leave them in for a week. The contact lenses were never designed for that, but when laser surgery took off, the industry lobbied governments to change approvals for long-term use (thus reducing the inconvenience factor). But for kids, removal is also healthier in general as it gives their eyes a chance to breathe. Plus, you do not want to have to figure out how to remove a stuck lens from a baby’s eye. Daily removal it would be.

For me, it was a struggle. I have never had contacts, I could never have contacts. I freak out with just having long lashes that frequently irritate me. I have trouble even doing the puff of air test at the eye doctor, they can’t get it anywhere near my eye before it clenches shut. But the bottom-line was that Jacob needed the lenses to see and it wasn’t like he could do it himself yet. And regardless of whether it made me squeamish, or made Jacob cry like crazy, his brain needed his eyes to be working, which meant it was time to man up. 

We saw the ophthalmologist, he showed us how to insert them, easy peasy, five seconds, done. People online said it was “tricky but we all had to learn”. Not a good sign that they weren’t saying, “Oh, no problem.” One of the hardest parts can be getting the child to stay still, but we got a tip from an optometrist friend. He suggested using the carseat. Which we did. We would basically put Jacob in, strap him up, and the cub would be relatively stable while we did the insertion.

How did it go? We sucked at it.

If feeding was a challenge, contact lens insertion was a nightmare of epic proportions. Such a tiny lens, such a tiny eye opening. There are three basic methods for doing it…you can put it on your finger like most adults do, and place it in the eye head on. Alternatively, you can try and pinch it and drop it in the eye like a CD into a tray. Both methods require the eye to be wide open to get it in. The third choice was the one that worked for me. I pinched the bottom of the lens, making it like a fan. Then I pulled up the top lid, slid the contact under, lowered the lid to hold it in place, and then pulled down the bottom lid a bit to let the contact slide in, releasing the lid to close over the lens once the contact is lying flat.

I say it worked for me, but what I really should say is “eventually”. The doctor did it with clamps, had them in, set, less than five seconds. No muss, no fuss, Jacob wasn’t exactly happy, but it wasn’t traumatizing. Our first time doing it ourselves? Over an hour. Almost 40 minutes for each lens. It was beyond horrible. A horrible, no good, very bad day.

Jacob was screaming, we were crying. Separate from the soul-wrenching nature of torturing our son, it was beyond frustrating. So close, and then it would slide out. Or we would drop it and have to look for it (fortunately, rarely). Or it would dry out while we were trying. I felt like I was all thumbs. We would try for five minutes each or so and then switch. Eventually they went in. Day 1 accomplished. Only 2500 more days to go until he might be able to help. Removal proved relatively easy, a few seconds.

The online group and others suggested trying it when he was asleep, it would go in more easily, less likely to fuss while we did it. But we were torturing him, he wasn’t going to sleep through that. The first week, it was an hour or more each day to get them in. Andrea couldn’t get them in consistently, partly on technique and partly emotional pain, so the first month was mostly me. Week 2, it was down to 30 minutes. Week 3, it was down to 10-15. Week 4, it was down to five minutes. Andrea figured out how to do it while he was asleep in his carseat. Her and I had to try to insert the lens at different angles, but eventually we figured it out. It was never easy, but we could do it.

That first month, a piece of me felt like it died every day. I knew it was hurting him. Sure, he wouldn’t remember, but I would. Forever. I had to close myself off emotionally while I did it, just to keep trying each day. If I didn’t succeed, Jacob wouldn’t learn to see. It was that simple. No choice, no retreat, no surrender. So I would torture Jacob for up to an hour, then kiss them goodbye and head into work. Fun times.

Thriving

I don’t know how, but Jacob continued to thrive. All the poking, prodding, lens insertions, adjusted formulas, everything. He handled it well, and was overall a pretty good-natured baby. He developed bronchiolitis in October, and was given an inhaler to start using. He had a urinary tract infection, too, requiring another visit to CHEO emergency. Twice in one month, how fun is that? Of course, every time we had to do a mental dance — could it wait until the next morning and go to a clinic? Should we go to emergency? Was this something “normal” or was it an unique issue for Jacob?

Generally, he was just being a normal baby. Andrea took him to his first post- natal yoga class in October, and we took him home to Peterborough for another visit at Thanksgiving. I loved making him laugh, and I would make eating motions on his back and he would laugh and laugh.

I would have loved to take him to my mother’s 80th birthday in October too, but he and Andrea were sick at home. We did have some fun at Hallowe’en however. Our friend, V, had bought him a panda costume when she was traveling, and although it was pretty big for a five month old, we put it on him and drove him over to her place to trick or treat.

November started, and Jacob started grabbing things more. He got a Jolly jumper and he started bouncing in it, good exercise for his legs and torso. He loved jumping with support. He had his first playgroup, ate his first baby cereal (yum, yum!) and we dressed him up in a Santa outfit and took some pictures. Jacob was not too impressed with us — sure, we could stick things in his eyes, and he wouldn’t complain, but put him in a Santa suit, and it was game over.

I want to end this piece on a somewhat ambiguous note, because as we neared the six month mark, I was having real trouble articulating even to myself what we were going through. Andrea and I had our first experience at CHEO where they asked us a question that seemed like a compliment but was also a cynical moment.

We went through a lot with the medical establishment in that first six months. And so we frequently dealt with doctors and nurses who had never seen Jacob before. Which also meant giving his patient history quickly, efficiently, outlining the highlights. When we started, it was more like a brain dump. Then we would answer lots of questions. The same ones regularly. So we started adjusting our spiel, pre-empting some of the questions. By November, it kind of looked like this:

This is Jacob, now 5m and 2w old. He had PPROM at 26 weeks, bed rest for ten weeks with low fluids, and then a C-section delivery at 36w, 5d. He had pneumothorax procedures on both lungs in the first two days, was on light oxygen, but never intubated. He spent two weeks in the NICU, mostly with feeding issues. He had failure to thrive at 7w, but we switched him entirely to bottle and now formula, and he’s been steadily gaining weight. He has a herniated umbilical cord, no issues, and reflux. He had congenital bilateral cataracts that have been removed at 3m, went well, and now wears contacts.

The doctors would then pause, look at us, and ask us, “Do either of you have a medical background?”. Because we had just given the normal patient history for our son in the same way they would tell it to each other. We had used the right terms, and we identified the most significant aspect i.e. that he never needed intubation (a giant issue from the NICU time that I mentioned earlier that we hadn’t realized was a signal check for future care). We said “no, no medical background”, but we wanted to scream, “No, just a roller coaster for six months.” Like I said, a partial compliment we would have been just as happy not to be able to receive.

And that’s where I was, mentally. We had spent six months dealing with all of this, and there were times where we had to fight really hard not to treat Jacob like a patient, even to ourselves. When doctors and nurses came to see him, I would always introduce him. He wasn’t a number, he wasn’t just a patient. He was a special, amazing, wonderful little boy who needed some help from us. But I wanted them to see Jacob, not just treat him.

It was equally hard for Andrea and I as a couple too. We spent so much time in that first six months talking about medical stuff. It was constant. Relentless even. Some days it seemed like we’d never discussed anything else. I’d come home some nights wondering what holy hell I was about to enter. I’d brace for a smack, and found it difficult to relax and enjoy things even when there wasn’t one that night. I was having trouble not feeling guilty too. So much of it was falling on Andrea because she was home with him, and because of our neighborhood setup, a little isolated too. I at least had a break of going to work and focusing on something else for awhile.

Separate from our individual side, our relationship suffered too. I know that divorce rates for parents of special needs kids are incredibly high, and while Jacob’s needs pale in comparison to some, I could see easily how a relationship could be stretched past the breaking point. It was an incredibly stressful time, sure, but we also spent what seemed like every waking moment talking about Jacob, and most of it wasn’t the fun stuff of what noise he made today or how big a diaper change had been.

Plus, every decision seemed momentous. Even when we agreed, we still had to make the decisions jointly on issues with a lot of grey area. And not the normal entry-level parenting stuff, but acute issues related to medical questions. I felt at times that we got put in a graduate-level parenting program, with no undergrad to ground us. We had to lean on each other, and we got through it together, but it stretched our relationship pretty far. Less compatible people would likely have snapped and divorced. It was easy to see how that would happen. Either through mutual separation or one parent not being able to take anymore and booking.

The day we found out about Jacob’s need for surgery was my worst day. When I had to tell Andrea to stop talking, stop telling me the news for a bit, I was close to needing a rubber room. I felt like my head was going to explode, like whatever I had inside of me that was “me” was nearly gone, I had nothing left. It didn’t last long, maybe 15 minutes, but it was a fine line between normalcy and just completely breaking down.

Mostly though, my ongoing challenge was struggling mightily with how to articulate my concern that we not see Jacob as a patient. That we not treat him as one. That we focus on the normal as much as possible, that we shift the balance to regular parenting issues. And then I had a small epiphany, courtesy of the aphakic group. One of the mothers on the group (and yes, I was one of the few men in the group and practically the only one who would post regularly) posted about her daughter and the issues she had been having over the last few years. I tried to articulate my fear, and the woman got it immediately. She said, “Yes, I try to remind myself that 98% is just her being a kid, and the other 2% is this eye issue.”

What a concept. A beautifully articulated phrase. Jacob was 98% little boy, and 2% other medical things. Yes, that was what I was trying to articulate. But we were spending so much time managing the 2%, I feared we were missing celebrating and enjoying the 98%. I feared we were treating a patient, not playing with the little boy.

But that could be changed. Jacob’s 2% was stable, finally. It was time to fully enjoy and embrace the 98% as often as we could without worrying the 2% would take him away from us. And with that epiphany, I felt like I could breathe again.