July 29, 2015

I know last time I said I would write about Ryder, but I should have written this post a very long time ago. I had intended to so many, many times, because this date is now one of the most important in my life, and it should have been acknowledged by now. Bear with me, because it’s a long one. But we wiill start with Ryder.

You all know Ryder. Ryder was about five and a half at this point, and he was very excited to become a big brother. We have a video clip somewhere of his reaction when we told him Julee was pregnant, and you should see the joy in his face. If I can ever track it down again after multiple phones and who knows how many backups, I’ll re-post it. It’s lovely.

So Ryder was onboard for a sibling. He was, however, very adamant that he did NOT want a sister. He had to share a bedroom with his new sibling, and he couldn’t handle the thought of there being anything pink in there. A man can only take so much. So, even though we kept Ryder’s own gender a secret from ourselves, we had the OB tell us this time around so we could warn him upfront. The gods showered their favor on him and blessed him with a little brother. Ryder sighed with relief, and then we got down to the business of choosing a name.

P.S.: I am totally in favor of not finding out the sex of your baby beforehand. Yes, I know, it can help you pick colors, blah blah blah, but there are very few true surprises in life, and I feel like this one is worth it. Anyway.

Julee had veto power last time due to the more than slightly harrowing circumstances of Ryder’s own birth, but the name had more or less been decided by the day, and when the time came, I was simply grateful for the good news and could care less about something as trivial as the kid’s name. Like I said, we had no idea whether we were having a boy or a girl the first time around, so we tried to be prepared either way. A girl’s name was easy, but a satisfying boy’s name was elusive. Finally, though, we settled on Ryder Quinn, Julee more than me, but again, on the day, it worked just fine. Julee graciously acknowledged her win for the first kid, so I got a little more pull with the second one. “Duncan” had been on my list for boys’ names forever, and Julee had it as a family name somewhere along the line, so that one worked pretty well. I had also always loved the name Jude, and Hey, Jude is my favorite Beatles song, so that one was my top pick. It took a little work for Julee, but eventually she came around. Ryder, however, was opposed to “Duncan” for reasons known only to him. His own personal preference was to name him “Argentina Neptune” – don’t ask where that came from. However, we won that fight by telling him that he could have Dunkin Donuts on the day of his brother’s birth. It was the perfect bribe, and “Duncan Jude” was settled on.

Duncan was due on September 5, and all preparations were made for the date. My mom and dad both planned trips out here to meet the new little guy, and we replaced Ryder’s regular bed with a massive loft bed with drawers built in so the two boys could share the tiny bedroom in our house at the time. Everything seemed to be going smoothly until July 29.

Julee was going for her final ultrasound that day, and we all went along so Ryder could hopefully see it as well and get a first glimpse at the new addition. He was super excited and felt pretty grown up. At the OB’s office, though, Julee’s blood pressure was abnormally high. It’s usually extremely low, bordering on non-existent, so this was unusual, and it wasn’t the first time during the pregnancy that it had been elevated above even the normal range. She also hadn’t felt much movement in recent days, and she’d been feeling unusually queasy lately as well. She hadn’t really had any morning sickness with Ryder, nor in the early stages of this one, but lately…. The OB was concerned, so she started searching for a fetal heartbeat.

She couldn’t find one.

Within seconds, Ryder and I were rushed back to the waiting room, where we spent the next hour or so with no idea what was happening. Finally, the OB came out and told me that we were having a baby TODAY. This was five and a half weeks before the due date, which meant that Duncan’s lungs were likely not fully formed yet. It was risky, but she knew that if we took him out that day, they could intervene in numerous ways. If we waited until he was full term… who knows? She had no idea what was going on in there, and the only way to know for sure was to deliver. NOW.

This was at 4 in the afternoon. Julee was going to deliver by C-section within the next few hours, and I had to be there at the hospital as well. So I got to work. I started making all the necessary calls. My mom immediately rescheduled her flight for the next day. Ryder ended up spending the night with one of his buddies, and I packed a bag for Julee to stay in the hospital for the next couple of days. I called all the close family and friends, and I prepared myself as best I could.

I knew more of what to expect this time around, since Ryder had also been delivered by a surprise C-section, but the stakes were much higher this time around. We wheeled into the room, and everything went as planned. And then they lifted Duncan up above the sheet, and I could see the fist-sized knot tied in his cord.

My heart dropped. I knew what oxygen deprivation usually meant for a fetus. Brain damage. I thought we could either be facing a lifetime of permanent disability or possibly planning a funeral. I was scared during Ryder’s delivery, but this was a completely new sort of dread. The OB and her team rushed him to the side table to get him breathing, which took several minutes and during that time every nightmare thought possible raced through my head. Finally, though, they got him to start breathing, but it was weak, and they knew they would have to provide support. Also, as soon as he started crying, he peed blood.

A second wave of terror washed over me. What was going on?? They rushed him out of the room and began doing the really hard work of keeping him alive. Julee was moved to recovery, and the attending doctor started interrogating me on family history of kidney issues. Those of you who know me well know that I only have one kidney – my left one was removed when I was three months old due to some serious problems I was having. Another story for another time, but right now it was relevant. The hospital Duncan was born in was small and didn’t have a NICU, so Duncan was going to have to be moved immediately. The larger hospital in nearby Pasadena had more resources. So, while Julee came down from the drugs, I made all the calls again, and they prepped him to be moved by ambulance.

This is Duncan’s first photo. I still have it on my phone to this day, and I’ll never delete it. Tube down his throat, electrodes stuck all over him, Duncan was sealed inside a plastic cocoon for his ride. We were only able to touch him once before they had to rush him away. I followed the ambulance in my car while they moved Julee to a private recovery room. Once Duncan arrived at Huntington, they had to infuse him with blood because of the loss from what he was still peeing out. If you’ve never seen this, it’s yet another parental nightmare. They had to insert a needle into his scalp. I was told his lungs hadn’t fully formed yet, and he would definitely need positive breath support for several days. Basically, a tube into his lungs to gently push air into them and help his still-developing and very weak diaphragm pull air in. Gravity would help him breathe out, but he needed help to start. He was also jaundiced and would need the bilirubin light for a while as well. I was told to go home and get some sleep. Come back in the morning, and they would update me as needed.

The fun continued the next day. When I got there, they told me that the blood in his urine was from damage to his kidneys and the adrenal glands on top of them. In fact, at that moment, they weren’t even sure his adrenals were developing at all. Plus, his kidney function was extremely low. I won’t go into the specifics, but essentially they were worried that his kidneys might never work properly.

I watched him tan under the bilirubin light for a while, and then I shared the news with all the relatives and peeps and went to the other hospital where Julee was recovering. She wasn’t gonna wait aroudn to see him. She hadn’t even held him yet. Less than a full day after having a C-section, Julee dressed and walked out of that hospital on her own two feet, and I drove her to Huntington. She walked into the NICU under her own power, and we were all together again. Except for Ryder, who would have to wait for a few more days to see him.

Preemies are usually much smaller than full-term babies, understandably. They can often have health issues their entire lives. and seeing a ward full of super tiny humans is a humbling thing. But Duncan was a MONSTER. at five and a half weeks early, this kid weighed almost SEVEN POUNDS. He dwarfed all the other babies in the NICU. Had he gone full term, he probably would have weighed around ten pounds. Julee literally would have given birth to a bowling ball with hair. He was a beast. And apparently, a strong one. They kept the breath support for about five or six days, if memory serves, but eventually the tube came out. His jaundice improved within about that same time, and all signs were good. Except that he was still peeing blood. They couldn’t figure out exactly where it was coming from.

After a week in the NICU he was moved into a private room for closer observation, and while it lessened, the blood was still there. His kidney function was low, but steadily climbing, even with the blood. But, after about nine days, they seemed to think he would be okay. We had begun to relax, thinking he would be home soon. Then, on Day Ten, the doctor on his case called me and told me they were moving him immediately to Children’s Hospital Los Angeles. After another ultrasound they suspected he might have a blood clot in his inferior vena cava, which was very bad news. Huntington was good, but they weren’t as good as CHLA. CHLA is one of the best pediatric hospitals in the world, and if anyone could help him, they could.

Another ambulance ride, more waiting, more terror. Duncan got to CHLA, and within an hour he was seen by a pediatric urologist. This dude was the biggest bro I had ever met. He was one of the best, and he knew it. As we waited in terror, he strolled in and told us nonchalantly that it was probably no big deal. It could be a blockage in his urethra, it could be this, it could be that, whatever, bro. It was the most Dude-California doctor experience we’d ever had, and it wasn’t exactly comforting. Doctor Bro left, and then we saw the nephrologist, Dr. Lemley. Lemley was fantastic. We todl him about what Doctor Bro told us, and he smiled and said, “Ah, yes, Doctor Bro. He’s a great urologist. But this is a kidney issue, and I’ve been doing this for a long time.”

In a nutshell, the lack of oxygen had manifested in damage to the kidneys instead of the brain, and the blood was essentially just scabbing from where his kidneys and adrenals were healing. We had very little to worry about in terms of immediate health. He was going to be okay. OH, and it had nothing to do with my own kidney history. Just a weird coincidence.

Duncan spent another week at CHLA, and during that time the bleeding stopped, and his kidney function improved. Julee spent a couple of nights there in the most uncomfortable hospital couch-bed in existence, but we were so close that we just drove down every day. After that week, he came home.

Dr. Lemley’s diagnosis wasn’t all sunshine. He told us that, although the initial damage was healing, it probably meant that his kidney function could be impaired permanently. It all depended on the number of nephrons in his kidneys, the little filters that everyone has that do the work. Nephrons apparently vary in number – the more you have, the better your kidneys are. There was no way to predict how many nephrons his kidneys had, because they would continue to grow as he grew, and all we could do was monitor them until adulthood. Lemley told us that we could probably expect him to need a kidney transplant by the time he was an adult. But, we wouldn’t know until we knew. Not the best news, but it was better than the way we felt two weeks earlier.

We saw Dr Lemley every week, then every two weeks, then every month, then every two months, then every three months until Duncan was about eighteen months old. At that point, he told me that somehow Duncan’s kidneys had fixed themselves. He’d never seen anything like it, and all of the staff referred to him as a miracle baby. He had healed himself with no intervention from an injury that was likely to have lifelong effects. Amazing. He’ll continue to be monitored until he’s eighteen, but now it’s every two years, and so far he’s fine. We went from worrying that he might not survive the night to a perfectly healthy baby boy. SCIENCE!!!

Life with Duncan Jude continues to have its challenges. There’s plenty of work to do to help him develop and grow, but man, is he strong. He’s very big for his age, just like his brother was and just like his father was. He’s whip-smart and precocious. He’s also stubborn, and that’s probably what saved him as a baby. He’s a fighter, and that will only help him overcome whatever obstacles he’ll face as he grows. And being autistic, he’ll have them. But I think he’ll be okay.

Now, the big question: did his birth trauma cause his autism? The answer: who the fuck knows? it doesn’t really matter, except maybe from a scientific point of view. But it’s done, and all we can do is help him figure it out. And he’s still a miracle baby, even when he’s a pain in the ass.

As of this writing, he’s currently dancing to “Zombies Want Your Candy” by the inimitable Parry Gripp, a kids’ musician who is now my mortal enemy. He’s playing with the dog and splashing in the spa because it’s hot outside. He’s come a long way from the baby in the plastic bubble.

Oh, and Ryder finally got to see him and hold him after that first week in the NICU. Here’s a picture of that. And the joy is still there.

P.S.: Ryder got his donuts, as promised.

2 thoughts on “July 29, 2015

  1. Man, you made me choke up reading this. Thank you for sharing such poignant details of your lives. I can only imagine the terror you went through. And I’m glad to read how Duncan is beating the odds – cheers to him, and all of you!

    Kahlil Joseph
    SAG-AFTRA
    Actor, Singer, Martial Artist
    http://www.kahliljoseph.com

    * Sent via iPhone *

    • Thanks Kahlil! For some reason I don’t get alerts when people post on this page, but I happened to notice your comment while I was writing the latest entry. Good to know someone is still reading this blog.

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