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Category: Uncategorized

A Whole Year Without Posting

Oh boy, I went a whole year without writing something personal. It was an eventful year. Every time I thought about writing, I debated whether or not I wanted to remember the moment. I debated whether writing would help someone else. I debated whether writing would hurt someone else. I spent my creative energies elsewhere. I resumed comedy! I ended the year with the best performance of my career! The year ended on a high note.

The year began on an unexpected note. Each child is their own person, and that was immediately clear from the get-go. Baby #2 was a lot more _work_ than we anticipated. I thought the additional stress was because we now had two kids. And a lot of challenges did stem from juggling two kids. A lot. But also, he had a lot of additional appointments. In the first four months we had seen a cardiologist, plastic surgeon (unclear if this one was necessary, but no regrets), dermatologist, ophthalmologist, neurologist and pediatrician, of course. David and I were both nervous, and in the middle of the night we would independently google our fears. ‘Twas not a great time.

At some point we quipped, “If there’s a 1% chance of something, we feel like he’s going to have it,” to our pediatrician, who helpfully said, “Oh, hm, you should think about getting on the list for genetic testing. It’s not a big deal, but you might as well line up an appointment.” I interpreted that as a casual recommendation and willfully ignored it. Then he was diagnosed with hypotonia, and we made a genetics appointment.

For anyone hoping to learn more about modern testing and the advances over the years, I highly recommend: The Genome Odyssey by Dr. Euan Angus Ashley. I was blown away by how recent the technology is, how much more accessible it has become, and humbled by the depth of independent research a lot of families do to give their kids the best chance possible. Several of the medicines for genetic conditions were discovered by parent scientists who tried things themselves. It has to be this way, because the sample size for genetic mutations is small: first most people don’t know what they have and second it could be hard to find people who do have similar conditions.

A few people ask whether we regret genetic testing, and I am going to list the benefits and negatives as we experienced them here:

Benefits:

1) Knowing is much better than not knowing. Before we tested, we were playing essentially a game of “whack a mole” where a symptom would appear, and then we would have to find a specialist to help. You have to do this regardless of whether or not you test. Before we tested, every time a new symptom appeared, we would google that symptom in conjunction with other symptoms. The results, as with any medical search, were often devastating.

I cannot stress enough how helpful it was to not have to keep searching randomly. Once we had the results, we could target our research and have a general idea of what to expect and other potential specialists to line up. The goal is always to give kids the best chance possible, and knowing helped us with this.

2) Once you know, states have programs that you can access, given your diagnosis. Healthcare is incredibly expensive, and it’s even more expensive if you require seeing specialists several times a month. I was happy to learn that there are mechanisms in place to help. Early intervention programs are a great resource for navigating a relatively lonely child raising experience.

3) Relatives who have been googling as well can stop. Stress levels overall decrease.

Downsides:

  1. Depending on the diagnosis, you may or may not have the answers you need. Most of the time, knowing the genetic mutation does not tell you how your child is going to perform. Every mutation has a range of outcomes. Typically the older research focuses on the most extreme outcomes, because those are the people that caught the interest of researchers. And again, sample sizes are typically small.
  2. Related to the above: if you have a very rare condition, as we do, you don’t have as many answers, or even forums, as you might expect. The doctors won’t have answers either. That’s okay.
  3. Your genes are not your destiny. Science has come a long way, and early intervention programs see some great outcomes. Technology advances have also helped a lot. We plan to leave whether he wants his result to be part of his identity up to him. In the mean time, we limit telling people, because we don’t want anyone else to bring preconceived notions into their interactions.

I am very grateful genetic testing was available to us.

Knock on wood, we are pretty fortunate that he appears to be on the easier end of the spectrum. And while the first part of the year was hard, he has always been a total delight. He is a joyful, opinionated, curious, quirky kid with a great sense of humor, just like his sister.

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OMG My Birth Story!

I think it’s important to document this, because soon I will forget it, and not enough people really share these stories.

As you know, I had a condition. I had too much amniotic fluid, which meant I was measuring as a woman carrying twins or triplets might be measuring, and my child was living in a spacious pool. This condition also made it so that I was contracting for literally almost two months, maybe more. The last two months the contractions were most intense. So every night, for two months, after cleaning up, I thought I was going into labor.

And to confirm I was indeed having contractions, when I fell in the parking lot that day while chasing down a shopping cart and I went into Labor and Delivery at the hospital for monitoring, they shared I was contracting on the monitor. But my cervix wasn’t dilated, so the baby wasn’t coming out, I was just contracting. The two month+ contractions weren’t in my mind. They were real.

In addition to the condition, I had Instagram, which is a social media platform that was feeding me lots of helpful labor and newborn content. One of the popular trends is natural laboring, where you labor at home as much as possible before going in. You do pelvic exercises, you stretch, you are calm and creating the most natural, soothing environment to birth your beautiful baby, without medical interventions. And several posts on Instagram told me that epidurals numb the pain and slow down the process, so you need pitocin to apply pressure to the baby, and it’s all a vicious cycle. I pride myself on valuing science, but in this case it all made sense, so I bought into this, knowing that if I needed to have a C-Section I would obviously listen to my doctor’s advice after pushing back a little.

I was scheduled for induction a little after 39 weeks. I wanted to be induced sooner, because being very pregnant with a toddler is hard, but between the pitocin shortage and the holiday, the hospital wasn’t scheduling anything before 39 weeks.

My water burst a little after 38 weeks.

On Saturday morning I made a whimsical Instagram reel, which had ample room for improvement, but I didn’t have the time to edit it and thought it was good enough. Also dancing for the reel caused another contraction, so I needed to stop production. Saturday afternoon I took my daughter to her language class, then we cleaned the house and had company who left around 8:30pm. At 9:30pm, as David was putting our daughter to bed, I was in the bathroom to pee and then crawl into bed, because I was so tired, when my water BURST! It BURST! I thought my doctor was joking when he said it would pop like a balloon, but it truly did that! Water gushed out, luckily into the toilet. I shrieked from surprise, and then I called David from the toilet to tell him what had happened.

Then I called the Ob’s office, and the answering service person, who may or may not have been a nurse, listened to me describe what happened, and she said, “Your water broke all right, congratulations!” Then she asked if I was having contractions, and actually, at the time, I wasn’t. She said someone would call me back. I took a shower, called my sister and asked her to get ready, ran around and added some things to the hospital bag. David told our daughter someone was coming and she would have to be brave (she doesn’t like sleeping alone). And then we waited for two hours for the hospital to call me back while I “labored at home” and my contractions started. So here’s the thing: as I stood around talking to my sister, more water gushed out, and I had to run to the toilet. Then as I was sitting on the medicine ball, to labor at home, more water gushed out. We were just cleaning up fluid for an hour. Doing all the exercises and stretches were completely out of the question.

I called the doctor’s office back, because no one had called us back, and within 15 minutes my doctor called me sleepily and said she was on the way to meet me at the hospital. And I asked, “Oh should I go?” and she was pretty shocked I wasn’t already on the way because I needed to be checked. At the hospital, the nurse asked if the doctor wanted them to see if I had “ruptured” and my doctor said, “There’s no need – she’s OBVIOUSLY ruptured.” This made me laugh for some reason.

Anyway, I was dilated and my contractions were only 5 minutes apart, and they asked if I wanted my epidural. At this point, all the Instagram propaganda starts speaking for me, and I am debating declining or postponing an epidural. David looks at me like I am crazy, and the doctor and nurse look at each other as well. I’ve been working through contractions for months though, and I think I can do it. I can do the natural birth. Ten minutes later I feel a real contraction that leaves me breathless, and I ask how soon I can get the epidural. They tell me an hour! I tell them that is “perfect” but really I want it immediately.

Soon after the epidural, my doctor tells me my cervix is not dilated enough, and they need to put me on low dose pitocin for the rest of the night. My Instagram brain is crushed. I ask if the pitocin bothers the baby, and the nurse explains that it does not. It just helps the cervix dilate. This isn’t want Instagram told me, but I have the sense to not say that out loud, and I accept the pitocin. BUT I do not turn the epidural up. So I was in so much pain I did not sleep from 2:30am – 8am. I was fully dilated by 9am and when they came in excited to start pushing, I was exhausted. “Second baby? This will be 20 minutes!” It was two hours, I turned the epidural all the way up and used the whole bag, I threw up multiple times, and for the final push they used a vacuum. I was physically spent and mentally preparing for a C-section, but I also did not want to have labored AND done the C-section. He came out blue with the cord around his neck twice and he did not cry, so David and I almost started crying, and then we heard him cry. David shared he knew we were close to him coming out because the room fills up with nurses ready to take the baby. It’s amazing.

The nurse shared I had a Level 3 tear, and I said, “That’s not so bad!” and she said 4 is the worst. I feel labor pain every time I pass gas or poop. That’s a level 3 tear. The doctor said it was good my water broke early, because he would have been too big for a vaginal birth on the induction date, but I think we wouldn’t have known until we were trying to push him out.

Some important takeaways:

  1. It’s okay to get an epidural and pitocin.
  2. Don’t take medical advice from Instagram.

This post is really more for me to remember. Ice packs and witch hazel were so helpful the first few days.

Also we are all in love. Raising a kid is so much more work and love than birthing one, but as we groan when our moms call us to talk or check in, it’s important to remember that we probably permanently destroyed their bodies, so the least we can do is talk to them.

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Polyhydramnios and LGA

I have a condition. Or, we have a condition? The first is called polyhydramnios, and when they first started listing it, I thought it was pretty common, but apparently it’s only 1 out of 100 pregnancies or so. The second is LGA, which means the baby is larger than average.

Something I’m running into though is that when the doctors talk to me, they’re pretty calm. But then when I read the notes, it seems _not_ as good. For example last week I had moderate polyhydramnios, and I just looked at the notes from yesterday, and it’s SEVERE polyhydramnios now! No one mentioned I had been upgraded.

I’m also doing this thing where I’m making plans that are going to be physically challenging to keep, because I figure that I’ll just go into labor beforehand and not have to follow through. But so far I’ve had to follow through on everything, and that’s on me, I know.

Also I’m really physically tired. However, I’m so committed to watching Twitter implode that I can’t sleep. I just need to scroll. BUT I JUST READ THAT IF YOU GET LESS THAN SIX HOURS OF SLEEP YOUR LABOR IS LONGER AND MORE LIKELY TO RESULT IN A C-SECTION. There is no winning here! What happens is I go to bed around midnight, get up around 2am to use the restroom, doom-scroll or read, and then my perfect *knock on wood* daughter wakes up in the middle of the night and insists one of us sleeps with her, and I’m happy to oblige.

Anyway, hoping we go into labor soon so I can renege on our social commitments. But also I should probably stare at my closet and figure out some clothes that will fit this weekend, because this kid seems super comfortable.

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You May Exit the Premises

I am ready for this baby to come into the world. On Friday I thought it was going to be time. I felt strong contractions and I was wildly productive and emotional: did laundry, hugged first-born, packed go-bag with first-born, washed dishes, went to toy store with first-born, washed car seat covers, scheduled and got a haircut, and then the contractions stopped, and I ate some chocolate (ie. returned to my normal ways).

I thought Friday was the big day because in the morning my mucus plug came out. But apparently that can come out weeks before. I’ve had contractions for over a month. Apparently that’s common with my condition, which is a big baby and lots of amniotic fluid.

Also he needs to safely exit because I am a very anxious person, and the longer he stays, and the bigger he gets, the more opportunities I have to research complications, and that’s not good for anybody!

And I fell a week and a half ago. Did I tell you about this? My shopping cart was rolling away in the parking lot, and I thought, “Oh no! The cart will hit a car!” and I chased it, and I fell over because I haven’t run in months, and I landed on my hands, knees, and stomach, and the cart probably hit a car, but I didn’t care anymore when I hit the ground. I popped up because I didn’t want a car to drive over me, and then I called the OB and she said I should go to Labor and Delivery for monitoring. Everything was fine, but that was a jarring experience, and it made me feel super dumb. A SHOPPING CART! Most of the scratches and bruises have healed. But I still feel embarrassed about this lapse in judgment.

I also feel like the luckiest mom in the world to have our daughter. At Labor and Delivery they asked if I have a will, and that made me think about how I don’t have a way to let my daughter know how much she was loved as she got older. I just hope David hands her my phone and shows her the thousands of photos and videos when she’s older. Preferably it’s my phone and not just his, because I think the photos I keep on my phone are more flattering depictions of us.

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Update

I am measuring 47 cm, which means I am measuring 47 weeks pregnant, which I didn’t know was possible. I am 37 weeks pregnant.

At some pointed I wanted to do maternity photos, but I think I’m now too big for them. The size of my stomach is perhaps too distracting for a reasonable photo. Also David found out they can run $400, and he pulled out his phone and said he would take family maternity photos.

One of my dear friends said, “You look past pregnant. You look like you’re a parody of a pregnant woman – someone who has stuffed a watermelon under her shirt and strapped it in.” She’s correct.

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Hate Passwords

I am so bad at remembering passwords. I know there are applications that can help store your passwords, but I don’t believe I will be able to remember the password to that application either.

I’m also bad at cleaning up/decluttering.

And I’m always late. Even my period would be a couple days late every cycle. My mind and body collaborate to ensure I’m late. I’ve convinced myself that if I were to show up on time to something, friends and family would worry. I now have to be late to keep up appearances.

Cooking. Cooking is just not my forte. I’ve figured out boxed Mac and Cheese, out of necessity, I can bake cookies, but always at 4x the estimated recipe time, and I can boil an egg or make a messy omelet (omelette?), but that’s about it.

I’m not entirely clear on how to chop an onion. Like I did it a couple days ago under my mom’s direction, but I’m not sure I would be able to do it on my own.

I don’t floss. I do it once in a while. It’s just the mirror is not easy for me to see when my glasses are off, and I don’t want to floss with my glasses on, because I think my glasses are usually off right after I wash my face. And if we’re being honest, even when I could see the mirror, I would not floss every day.

I don’t wear deodorant when I’m pregnant, so there’s that.

Oh no, I’ve been drinking 1/8 cups of coffee every few days during pregnancy because I cannot resist, and I just read on Instagram that drinking coffee during pregnancy makes your kid shorter. Eek!

I’m definitely a hoarder.

I don’t finish reading every book I start reading. It’s worse than that. I have a few books on display I haven’t actually read yet.

I don’t bring a lot to the table. But I love hard. I love the people in my life so much.

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Do You Remember the Time

I started laughing today thinking about a moment on our honeymoon.

We were in northern Spain, and we had a small rental car that we had somehow driven off-road following the navigator directions.

We were at the top of a beautiful mountain. The view was stunning. The trees all around were lush with green leaves. The small rental car was stuck and the path was narrow.

I told David, “If we die today, it would be okay, because I have never been happier.”

And David replied, “Shut up. No. Ugh. You are not being helpful.”

I don’t remember how David got us out of there, but I’m glad he did. And I’ll never be so ridiculous again, especially now that we have additional responsibilities we care deeply about.

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Admittedly, I’m Pretty Big

Things I hear a lot:

“Let me guess, twins?”

“Looks like twins!”

“When are you due? REALLY? Six MORE weeks?”

“Are you sure it’s not twins?”

“As, um, beautiful as you look, we have been so impressed by your ability to move around all weekend.”

“Are you going to be able to make it through the weekend?”

“I saw you turn around and thought ‘WHOA, SHE’S VERY BIG’.”

And admittedly, I am pretty big. I am measuring on the high end of the safe range, and when I look at pictures of other people at a similar point in their pregnancy, they always reveal they are pregnant with twins.

I don’t think it’s twins. I haven’t been to a doctor yet, so I can’t say for sure, but I’m pretty sure it’s just one kid.

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Phone Banking

I’m phone banking today for Moms Demand Action for Gun Sense. It’s my first time.

I just reviewed the tips, and tip #1 is to smile when you are talking.

The script says, “Our country is reeling from the recent tragedies and the 110 Americans taken from us every day because of our gun violence epidemic.”

So I won’t smile when saying that sentence. I will smile if they agree to be connected to their senator. This is me putting my own little touch on the guidance.

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I Want to Do Everything I Want

My daughter has started saying “I want to do everything I want,” when she knows it’s time to go home or get ready for bed time. She says it really calmly. I love it.

The first time she said it was Wednesday May 4, while playing in the basement. We had been lightly tossing a deflated football, and then she wanted to ride her rocking horse, and then she wanted to chase David’s old remote control car.

The second time she said it was on the playground, Thursday. It was the next day. It was late, but she wanted she wanted to go down a big slide and then swing before we went home for dinner. David said, “I make the decision,” and she replied, “No, I make the decision.” Then she repeated, at the top of the slide, “I make the decision.”

Even though what she wants has not been aligned with what I want (her to go to bed sooner), I want her to do everything she wants. I want her to make a plan. I want her to make decisions. I want her to be able to follow through on her vision. And as an adult watching people work really hard to take away women’s rights, I don’t really know what to do right now.

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