I left off the story at birth + 7 weeks. Jacob was home, things were normalizing, we were starting to think we were in regular parent mode. Then the week from hell started.
The first blow
We had been up to the cottage on the weekend, our first trip home to show off the baby to various extended family members. A chance to hear the oohs and ahhs, a chance to have various members hold him and cuddle him and enjoy the fresh baby smell. On the way home on Sunday, we were in a car accident.
We were in Kanata, bopping along, a little bit of rain coming down. Just enough to make things slick. I was in the centre lane, not pushing it too hard, when someone in front of us suddenly veered left and there right in front of me was a car at a dead stop. I had no warning, they were dead stopped from what looked like someone cutting them off and I didn’t see the brake lights until the person in front of me suddenly shifted over. I couldn’t change lanes, cars to both sides, and I went into full lock-up. I rear-ended the car ahead, but had my speed down to about 25-30 km per hour, not enough for the airbags to deploy but still going fast enough to rattle our teeth, Andrea struck her arm on the dashboard, I put my left knee into the frame underneath the dash and shattered a coin holder. Jacob? He basically slept through it in his cocoon-like car seat.
I could only think, “Check Jacob!”. Andrea seemed fine, but I jumped out, ran around, opened the door, grabbed the carseat, removed it, and ran to the side of the road in case someone rear-ended us while we were stopped. Andrea was still in the car but I was checking Jacob. He seemed fine. Still asleep. No issues.
Eventually a cop came, looked at the scene, basically said, “Crap happens”, so no ticket or anything. It was his fourth accident in two hours, mostly the same thing. Slicker roads, cars going less than the speed limit but not being able to stop in time. I have rerun that scenario a 1000 times through my head. The only solution to avoid it was avoiding the highway or going even slower (cars were already whizzing around me before the accident). On busy weekends, I do both now.
We got the ambulance to check him out. Andrea sat in the ambulance with them, and I think she had her arm checked too a bit, while I never even mentioned my knee. I wanted to insist on sending Jacob to the hospital, and they offered, but I knew that was just my paranoia. Jacob wasn’t injured or even jarred apparently. We had the car towed, threw some of our luggage in the police van, and the cop gave us a ride all the way home. He probably wasn’t supposed to, but I think he realized how shook up we were and worried about the baby.
We got home, got inside, settled ourselves, and cried. The tension had to leave some way, and that was how it left. We had been spared a bigger crisis, but it was scary as hell. We were sore the next day, but things were okay. I think I stayed home. We would need to figure out things with the insurance company, the front end of the car was damaged, but I thought it could probably be fixed. We could handle this. We also had to buy a new carseat (his seat was probably fine, but they are only rated for one “crash”, and not worth risking his life to save a few bucks).
The second blow
On the Tuesday, I went into work still feeling a little sore, but I tried to focus. As I mentioned earlier, I had been feeling a bit unprofessional. My boss was great, and my backup was doing a fantastic job covering off the extra work when I wasn’t around, but I had never missed so much work in my life. If it had been normal parental leave, i.e. planned leave, that would have been far more manageable than my constant “oops, not in today” schedule. But I tried to buckle in, get my head in the game.
At around mid-day, Andrea called me. She had taken Jacob to the pediatrician for a routine visit, and the news wasn’t good. They had diagnosed him as failure to thrive. Three little words that really meant Jacob was dying.
I knew what those words meant, they had warned us about it. It meant, in mechanical terms, that Jacob wasn’t gaining weight and was in fact losing it. They wanted Andrea to take him immediately to CHEO emergency and have him admitted. I have no idea how Andrea got there, or how I got there. I think I had a rental car by then. Somehow we ended up at CHEO. By the time I got there, I was thinking, “Wait a minute, Jacob was doing great the last few weeks, what the hell changed????”. I was hoping the pediatrician had over-reacted, which is what Andrea had been thinking at the doctor’s office too. But when they tell you “Failure to Thrive” and “admit him to CHEO”, you don’t second-guess their recommendation. It’s not the time to find answers in often mis-spelled anecdotes on the internet.
We bounced around the emergency ward for awhile and they had put him on an IV almost immediately, so he was getting fluids. They checked him out, decided to admit him, and sent us upstairs to an actual ward. Like I said, not something light and carefree, he needed to be admitted. If ever I had felt like a bad father in the NICU because I couldn’t figure out how to feed my son, the feeling was back with a vengeance now. Jacob was failing to thrive and I didn’t even realize it? What the hell kind of father was I? I don’t think I have ever felt so helpless, so useless, so demoralized in all my life. This wasn’t a result of birth. We did this to him, it was clearly our fault.
I can’t remember going home to bring stuff back to sleep in but Andrea stayed the first night, I think. We alternated. Tuesday / Wednesday / Thursday. Jacob looked so tiny in the bed. We found out that CHEO had the great “parents” beds that are basically chairs designed by autobots, and that transform into a completely utilitarian and utterly uncomfortable bed. But at least you can stay in the room with the baby.
After the scare of the first day, the hospitalization was uneventful. Almost anti-climactic. The basic issue came down to Jacob not getting enough food, between sucking at the breast or the supplemental bottles. Since we couldn’t tell how much he was getting at the the breast, we didn’t know how much to supplement with bottles. With failure to thrive, and the need to monitor both intake and outflow, breastfeeding was now officially at an end.
How exactly do you monitor how much he ate, and how much he vacated? Pretty much like it sounds. Yep, we counted the ounces of milk he ate, we started adding formula to the breastmilk to make it thicker and more fattening/filling, and we had to weigh every diaper to figure how much he peed and pooped. Total in, total out, calculate the difference, record it on a chart, and then the doctors could figure out via magical calculations how well his digestive system was working. But, honestly, they weren’t actively doing anything. He was off the IV by the second night. Basically, he was fine then, he just needed ongoing monitoring and tests. He needed his input counted and his diapers weighed. We felt that we didn’t need to be in the hospital to do that. By Thursday, we were going stir crazy. By Friday, we had convinced them to give us night passes — we could take him home at night, but then bring him back during the day for ongoing monitoring. “Start the car! We’re outta here!”.
Along with the formula additions to the breastmilk, we also added more people to our list of specialists to see — a dietician for ongoing weight gain, gastroenterology for suspected reflux (who prescribed Ranitidine), and an occupational therapist (O/T) for feeding issues (in case his latching issues went past the breast or bottle). We even threw in cranial-sacral treatments for a bit.
This was the point at which I started my standard joke, one that Andrea probably feels I’ve used way too often, “that we had seen every specialist except a veterinarian, and I couldn’t be sure there wasn’t one in there”. For those who haven’t run the NICU / CHEO treadmill, it is mildly amusing; for the rest of us, it’s a bit of dark humour.
The final blow
The biggest hit for me however was the third one, which came on the Thursday. Jacob was scheduled to see Dr. O, the ophthalmologist, and since we were already in CHEO, it was simple to bundle him up and be escorted down. Someone had to come with us, but that was mainly to transport his hospital records. We got inside the clinic, got settled. I had been in the hospital overnight, and needed a small break to go to the washroom. They put some drops in his eyes, and it looked like it would be about an hour or so before we saw the doctor, i.e. the nurse told us to get comfortable, so I bailed long enough to go to the washroom and grab a muffin to eat. I was gone about 15 minutes, tops. When I got back, the doctor had already seen Jacob, made his diagnosis, and set Jacob free to go back upstairs.
Remember when I said awhile ago that I don’t normally believe in regrets, but that I do regret not realizing that Andrea hadn’t held Jacob faster when he was born? Well, this is my second regret. I left to go to the washroom, eat and come back, and while I was gone, the third hit came. Jacob’s cataracts were filling in. He needed surgery, probably in about a month. And then he would get his contacts. That we would have to put in daily and remove daily.
Andrea told me this as I got back to the clinic area. I thought I was just coming back to the waiting room, but they were already done, and leaving. So she told me the news as we walked down the hall. Each phrase felt like a punch. It wasn’t her, it was the words. First the car crash. Then failure to thrive. Then the needed cataract surgery. Then the coming contact lenses. I held up my hand and stopped her from talking. I needed a moment to digest, I said.
I was lying. I didn’t need a moment to digest. I needed to backpedal into a corner to stop the damage that the punches were doing to my soul. There’s a boxing metaphor that people like to use, particularly in business and government, about people “punching above their weight.” It’s meant as a compliment, but in real life, punching above your weight isn’t sustainable, and what it really means is that eventually the heavy weight is going to step in and knock you on your ass. I felt like a bantamweight going up against the undefeated reigning heavyweight champion, and my luck had just run out. My mind ran backwards to the corner as fast as it could get there.
I had known that the surgery was possible, even likely, but I hoped not yet. Light was getting through, the cataracts weren’t filling in, it was going well, all things considered. Bam! Surgery. And not just simple surgery, EYE surgery. More like a combination punch, left jab, with a full right cross.
I also had known a little bit about the contact lens situation, since Andrea had them when she was young. But I thought they didn’t do them until they were 4 years old, so I thought he would have glasses. I didn’t realize that the surgery would be followed by inserting contact lenses in a baby. Bam!
That last one felt like it was a little below the belt. I was looking around for a ref, but there is no referee in this type of parenting, no one to step in and say, “Okay, low blow, retreat to your corners.” I felt like I was a standing 8 count and just trying to focus.
By the time we were back upstairs, I was willing to hear more. But there wasn’t any, that had been it. It’s a weird day when your only good news is that there isn’t any more bad news.
The ropes were my friends
We survived the week. I’m not entirely sure how, but we did. We added three more sets of appointments to our schedule, and started adjusting to the idea of the impending surgery. I found an online group for parents of APHAKIC children. Aphakic means people who have had the lens of their eye removed. Which is what Jacob would have done when the surgery was performed. For me, the group was a much-needed lifeline. Andrea knew enough about the cataract world from her own experiences, but I needed people to talk to, to converse with, to learn from about the world I was about to enter. I needed a support network and the online group was the best choice available. I didn’t want to add to Andrea’s burden by pestering her daily with either my questions or emotions.
As a small digression, the Aphakic group is a strange world unto itself. Most of the people who come to the group do exactly what I did the first week. They join, and then they post a message that looks a lot like “Helppppppppppppppppppppppppp! I have no idea what this means, I’m going crazy, help me make sense of this!”. Most of the advice seems facile, almost ludicrous at first. Breathe. Focus on stuff day by day. Don’t worry, you’ll manage. Standard group stuff, supportive, etc. And it helped. I didn’t think it would, but it did. Some of the people on the group had kids that were now in their teens; most of us were parents with kids in the under 5 years old range. Six years later, I’m still subscribed to the group. I monitor. I skim read. I’m not active. But, once in awhile, a person will post for the first time and say “Hellllllpppppppppp!” and I’ll respond. Saying we’ve been there. Breathe. Focus on stuff day by day. Don’t worry, you’ll manage.
And we did. I would have been freaked out if it was surgery on my own eye, but somehow this seemed normal. Routine. Maybe just a new normal. Life went on. We hung out with friends like L&N, who had a little boy about two at the time. We spent the August long weekend test driving new cars, as ours had been written off by the insurance. We made another trek to the cottage — keeping things normal. Andrea spent a week there even, as well as having another chance to show him off in Peterborough. On the fun side, we picked up a rocker chair that Jacob LOVED to swing in, often falling asleep.
The interruption in feeding for Jacob initially, and then later when Andrea had to stop breastfeeding, confused Andrea’s body enough to stop producing milk even though she was actively trying to pump, an obviously frustrating experience. The only silver lining was that as we switched to formula only, I could now give him the 2:00 a.m. bottle and let Andrea sleep. A new routine started whereby Andrea would go to bed, and I would feed him just after midnight. Then in the morning, around 6:00 when he was hungry, she would take him. It wasn’t perfect, but it was giving her a chance at much needed sleep. And, a small bonus — her pregnancy cured most of her sleep apnea. For me, it was one of my favorite times. Holding Jacob in my arms after he ate, rocking him as he fell asleep, waiting for our favorite sign from him that he was now “under”. He would give a bit of a heavy sigh, and his whole body would relax. It was awesome.
The month passed. We adapted. We managed. And then it was time for the surgery.
Jacob had his eye surgery on the last Tuesday in August. I think I was more worried about the need for him to fast before the surgery than the actual surgery. It was just 4-5 weeks earlier that he’d had failure to thrive, and here we were withholding food from him. He was okay with it though, hardly fussed.
The anesthesiologist said he was good to go, no issues with his lungs (they’d checked him out 2 weeks previously just to get an overview), and so they whisked him away. Dr. O said it would take a little while to get set up so he asked if we had any questions. I didn’t have any about the surgery — between the online community and Andrea, and some additional internet research, I felt I knew as much as I wanted to know. Basically, the lens of the eye is made up of several layers, and the cataracts form between the last two layers of the lens; to remove the cataract, they basically remove the lens leaving a hole for light to get through to the back of the eye so the brain can see.
But we had another issue. Generally, pediatric ophthalmology is a pretty narrow speciality. In fact, outside of the ones at CHEO, there was only one in town. He was getting on in years, no replacement in sight, and there were definitely two very large camps of followers of him — they either thought he was the greatest thing since sliced bread as he was their kid’s only hope, or they thought he was a complete whackjob who should have stopped practicing years before. I knew two people who knew him personally, and the reviews were not good. So I asked Dr. O for advice.
I spoke fairly candidly with Dr. O — telling him that while I couldn’t judge medical expertise myself, I am pretty good at judging the way other people in the same profession talk about a colleague. It wasn’t positive, unlike Dr. O himself who everyone — patients, other doctors, other optometric people, literally everyone — raved about. I was blunt on this point — if the other doctor was the only surgical option in town, Jacob would be experiencing surgical tourism in another city. No chance in hell was he operating on Jacob. Dr. O’s response was somewhat candid as well — “He’s the only game in town.” Fair enough, and I was willing to drive Jacob to Kingston or Montreal or Toronto if need be, but it was during this conversation that I kind of realized something we hadn’t known.
Because Jacob was born at the Ottawa General, and the Eye Institute is attached, they did the ophthalmology consult and we got Dr. O. Which essentially made Jacob his patient from day 1. We didn’t realize that there was a regular waiting list if you weren’t already a patient of Dr. O’s at CHEO. Jacob had jumped the queue. Some parents could wait up to 2 years for a non-urgent consult, we got in immediately. But some parents didn’t have that winning ticket, and so they were only seen by the other guy. We would continue to be followed by Dr. O i.e. he would be seeing Jacob regularly, so we could use the other guy for fitting the contact lenses and ongoing monitoring. Careful self-management in dealing with the office in the other place would mitigate some of the negative aspects too, so we would make it work. It seems odd that this is the conversation that is still so vivid in my brain, but it was what was weighing on my mind at the time.
I had no worries about the surgical team at CHEO — Dr. O had my utmost confidence, my only concern was that it went well and what the visual outcomes would be. One to two percent of patients experience complications of a serious sort, up to including possible blindness, so I should have been freaking. I wasn’t. Perhaps because the alternative to surgery was blindness. The cataract wouldn’t let light through; if the light doesn’t get through, no vision; no vision, the brain wouldn’t learn to see. A to B to C to D. A perfect logic chain.
The surgery went textbook perfect. Dr. O was complete smiles when he came out. Jacob was an ideal patient, everything went swimmingly, no issues with anesthetic, or anything else. He had patches on his eyes over night, and we came back for post-op care, but it was easy peasy lemon squeezy. I had heard horrible stories in the group about possible bruising swelling up around the eyes, rejections of anesthetic, a few other adverse side effects or experiences, but Jacob was the model patient. He even went right back on his feed at the right time. No issues.
I wanted to cry in relief.