Yesterday morning I watched the inauguration with my 11-year-old stepdaughter Sara. The whole event was a stark and wonderful contrast from the past four years. But what struck me most was seeing Sara’s face light up when Vice President Kamala Harris was sworn in. She was so excited and nearly brought to tears. I’m excited that she and other young women are able to look up to such a strong, powerful female role model. Today I’m filled with hope and optimism, which is a nice change of pace.
A quick bit of personal news. I have ambitious goals for my writing this year and I’m working on them as part of a case study with Rob Hardy, the founder of Ungated. We’ll be writing periodic updates on the Ungated website, which I’ll link to in future newsletters.
A big part of growing an audience is word of mouth, so please don’t hesitate to spread the word.
Now, onto this week’s story.
I’ve been sitting in our Honda CR-V on the eighth floor of the UCSF Benioff Children’s Hospital parking garage for almost four hours.
My two-and-a-half-year-old daughter Em, short for Emily, had eye surgery this morning and she is still sleeping off the anesthesia in a hospital recovery room. While this was a low-risk procedure done without an overnight stay, it’s always a little nerve-wracking when anesthesia is involved. I wish she would wake up so I know all is okay and we can get heading home before traffic.
Due to COVID precautions, only one parent is allowed in the hospital and my wife Allison chose to stay with Em. For me, that means spending the entirety of Em’s hospital stay outside, mostly in the car, trying to get some work done on my laptop. Spoiler alert: not much work is getting done.
I feel somewhat useless being outside the hospital. I can’t even be there for Allison beyond a periodic text exchange or brief phone call. My mind keeps going back to the time Em had her first surgery. She was only four months old and she was in urgent need of feeding tube placement surgery. It was a serious surgery and we were making a life-altering decision for Em.
We’re meeting with the surgeon to discuss Em’s feeding tube surgery because we’re desperate.
Because of Em’s cerebral palsy, she is unable to swallow safely and gets breast milk through a tube in her nose called an NG tube. For the past three weeks, she has been projectile vomiting almost every day. We’ve been giving her Allison’s pumped breastmilk through a feeding pump at an excruciatingly slow rate around the clock—even while she’s sleeping. The theory being that not much milk should be sitting in her stomach at any given time and therefore there’s less of a chance of her throwing up. Yet, as soon as she starts to wiggle around and poof out her lips, we know what’s coming next. We’re at our wit’s end.
Em’s surgeon is one of those people who inserts so many filler words when he talks it’s hard not to laugh. Nearly every sentence is punctuated with a “so on and so forth,” a “what have you,” or a “so to speak.” I find myself wondering how nobody has ever pointed it out to him. It makes it hard to concentrate on the serious information he is talking about.
He’s telling us about surgically placing a feeding tube, called a G-tube, a longer-term solution than the tube that’s in her nose. The G-tube is mushroom-shaped where the “cap” sits on her belly and the “stem” fits through a surgically made hole that goes directly into her stomach. I’m already calling it her first piercing.
He also suggests that we consider a procedure he can do at the same time called a Nissen fundoplication, or Nissen for short. He explains that he would take the top portion of her stomach and wrap it around to tighten the bottom of her esophagus. It’s designed to help reduce acid reflux, which is what has been triggering Em’s vomiting. It feels like a more drastic and invasive surgery than the G-tube, but he assures us that he does them all the time.
At first, it seems like a no brainer. She has reflux that can cause her to projectile vomit and he has a fix for said reflux. Voila! Fixed. Right? If only it were that simple.
The problem is that while the G-tube can always be taken out later if Em’s eventually able to eat enough by mouth, the Nissen is permanent. With it, she won’t be able to vomit or even burp for the rest of her life. Of course, my mind immediately fast forwards to her in college having had one too many drinks and being unable to throw up.
How can we possibly make a life-changing decision like this only four months into her life?
“Whoa, we can open the back hatch just by waving our foot underneath the back bumper,” I say to Allison three days later.
We’re waiting for Em’s G-tube and Nissen surgery to be done. We’ve already eaten breakfast in the cafe and walked around the hospital to kill some time. Now we’re back in the waiting area trying to keep our minds occupied. I’m reading the owner’s manual for our new Honda CR-V that we bought a week and a half ago and it’s working surprisingly well as a distraction. We’re thankful that the surgeon was able to get Em on the schedule so quickly, but we’re full of nerves while we anxiously wait to hear how she does.
“That’s cool,” Allison says. I can tell she isn’t really paying attention. Instead, she’s obsessively checking the flatscreen monitor in the corner of the room where Em’s assigned patient number shows that she’s still in her procedure. We are waiting for it to change to the “in recovery” message so we can see her.
The surgery is at Lucille Packard Hospital at Stanford in Palo Alto, a two-hour drive from our home. We drove down last night and stayed at a hotel nearby. It was our first road trip in the new family car. Em slept on the queen-sized bed in between Allison and me, though we barely slept at all.
I hope we made the right decision about the Nissen. But how can I be sure? She’s so young. We can’t possibly know what the future holds for her. But she’s been struggling so much and life at home has been brutally hard so we had to do something. It’s a parenting decision we never knew we’d have to make.
The surgeon made his rounds about an hour ago. It’s the day after Em’s surgery and he showed us how to use her G-tube. We were taken aback as he spun it around on her belly. She didn’t seem to mind and he said it won’t hurt her—it’s like moving around an earring in a pierced ear. It just looked strange.
I realize I forgot to ask about how to “vent” Em’s G-tube. Before the surgery, I looked up some articles and videos online to learn about the tube. In one of the videos, I saw a mom “vent” her daughter who was about eight-years-old. Venting releases excess gas from the stomach which is normally released with a burp, something that isn’t possible after the Nissen procedure. I’m surprised the surgeon didn’t say anything about it.
“I’m just going to try it,” I say to Allison.
I rummage through the supplies we were given in Em’s hospital room. I find a twelve-inch extension tube that attaches on one side to her G-tube and to a plastic syringe on the other. I cautiously attach it to Em’s G-tube. I think I have it right.
“Okay, Em. Here goes nothing,” I say.
I immediately hear a loud burst of air and see contents from her stomach race up the extension tube, dart up the syringe, and soar up through the air and get stuck on the ceiling. It’s like Em hocked a massive loogie through her G-tube. She didn’t seem phased by it.
Allison and I look at each other and laugh.
This is all so strange, but I guess it’s our new normal.
All went well with Em’s eye surgery—minus the annoying traffic on the drive home—and she’s doing great. I’m so proud of how much of a champ she is.
There was a point when we thought we might not go through with the surgery. The doctor said there’s a small chance of it improving her vision. He said her vision issues are more of a software issue and the surgery is a hardware fix. The more we considered it, the more we thought it was an important thing to do for her.
We communicate with our eyes more than we realize. She has enough working against her already—she likely won’t ever walk and she might not be able to talk normally—so we figured we could take one variable out of the equation. At the very least, now she’ll be able to connect with people on a human level with her eyes.
As parents, we’re forced to make decisions all the time for our children. Most are small, like what outfit they should wear or which diapers to buy. Others are bigger, like what preschool they should attend or which pediatrician to take them to. In our case, many of our decisions have been much tougher with potentially life-long implications for Em. We’ve learned that we have to take the emotions out of the decisions as much as possible and focus on what’s best for Em. Her health, comfort, and well-being are what’s most important.
It’s striking now when she locks eyes with me. The first time I saw both of her beautiful, blue eyes looking straight at me with a huge grin on her face, I knew we made the right decision.
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I look forward to this newsletter every time it comes out. It's a tremendous treasure to receive this inexplicable journey in such a candid and grounded way. Thank you, as always. Big fan.
If only all the children in our country were loved even half as much as you love your precious Em.