A Scary Diagnosis

…or something like that.

My thoughts are scrambled, so stick with me.

I’m just going to date this and type. It might be a mess, honestly.

PREFACE: I wanted to share Shep’s birth story, but it didn’t make sense to share it without some background information. I typed all of this up prior to his arrival, but honestly wasn’t so sure that I’d even share it here. I’m feeling a bit more courageous now, and hopeful that maybe someone in my situation will stumble across this at just the right time in their own journey. It was so hard for me to find stories that I could relate to in all of my googling after these appointments; all I could find were a few message boards of moms chatting and tons of medical research bullshit that made me feel even worse. Anyway, here we go….

December 21, 2020

I had an appointment with my ob/gyn to check on baby boy. I was approximately 35 weeks pregnant at that point, so everything was expected to be pretty routine as far as appointments go. We were actually really excited because my doctor offers a “growth scan”, which is just an extra ultrasound pretty late in pregnancy to check baby’s growth (that apparently not a lot of doctor’s offer). We couldn’t wait to see his squishy little cheeks, and try to guess who he looked more like. (Spoiler: he was Eleanor’s twin; so basically I’m giving birth to my husband all over again — which is fine, because the two of them are pretty cute in my opinion)

Anyway, we got through the ultrasound and were sent in to a different room to chat with my doctor, and do the standard belly measurements and all of that. He asked if I was having any problems, and I half-jokingly said that other than feeling like this baby was going to fall out of me (the pelvic pressure and pain at that point was intense). He laughed, and suggested that I scoop the little guy up and bring him in for a check-up, should that actually happen. [Have I mentioned that I really like my doctor? He’s the perfect mix of my-kind-of-people and actual doctor-doctor, if that makes any sense]

Before we were about to head out and schedule our next appointment, he casually mentioned that the ultrasound tech had noticed something on our ultrasound. He prefaced by saying that he wasn’t privy to the situation, but also wasn’t really concerned, because at this point all babies progress differently and that “normal” was a relative term. Like shoe size.

I zoned out as soon as the words started coming from his mouth, because my heart sank even hearing that something could potentially be wrong at this point. THE FIRST TRIMESTER WAS SUPPOSED TO BE THE SCARY TIME. WE MADE IT THROUGH THE FIRST TRIMESTER. WE WERE IN THE FREAKING HOME STRETCH. HOW COULD SOMETHING BE WRONG NOW?? OUT OF THE BLUE??

He said something about brain ventricles, and how there’s a scale of “normal”, and that our baby was borderline normal. Just slightly off the scale. Enlarged ventricles in the brain.

He circled back to not being super knowledgeable in the specifics of that, and that honestly it could be normal for our kid. The same way that some people wear a size 16 shoe. It’s not “normal” for everyone, but for them it’s their normal. It doesn’t necessarily mean anything. And he said that he would definitely do some research before my next appointment, at which point he wanted another ultrasound to recheck the status of said brain ventricles.

I politely excused myself from the room, leaving Leslie and him behind, for a bathroom break; and while I’m not normally this forward or pushy, I told him that he’d need to hop on Google or wherever he does his research while I was gone.

I think he could read the urgency in my tone, because by the time I came back from the bathroom, he mentioned that he could send us to a high-risk ob for the next ultrasound, since they were more likely to have seen this kind of thing more often than him.

Okay, let’s do that.

January 4, 2021

This was the earliest that the high-risk ob could see us. I was 37 weeks pregnant at this point. Time was running out. WHY WAS THIS EVEN HAPPENING TO US??

Leading up to this appointment, I had cried every day. I’m not talking a few tears here and there, I’m talking full on ugly crying while doing mundane things like unloading the dishwasher.

Every thought had gone through my head about every possible outcome (thanks Google). I was mentally preparing myself that our lives might be 100x harder in the very near future; and when you already live with anxiety, sometimes your everyday life (which is not very hard at all) feels very hard. Getting out of bed and getting ready for the day can sometimes feel as out of reach as running a marathon that you didn’t train for. So the idea that our baby could have a harder life because of some enlarged ventricles made me sick to my stomach.

However, I still had hope. Christmas was a good distraction. And I had hope that the high-risk ob would either not see what our regular ultrasound tech saw OR that he would see the same thing and offer some form of comfort, having experience in that.

He did neither.

I understand that just because you work in a high-risk office, doesn’t mean that you want to live life moping around everyday. I get that. You still need to be happy. You still need to be upbeat.

But something about the way that the information was presented to us at this appointment just rubbed me the wrong way. It felt like they had wrapped it all up in pretty paper with a fancy bow on top, and served it to us on a silver platter while wearing a smile.

I couldn’t bring myself to smile back.

He made comments like “well at this point, we’re having this baby; so we just have to wait and see.”

WTF?

So at this point, since we’re past the point of termination, your feelings and emotions can take a backseat for the remainder of this pregnancy. We’re not going to send you for further testing. [That was my take away]

Yes, the ventricles were enlarged (maybe even larger than our original ultrasound had shown; I don’t know, I zoned out again) and also the cerebellum measurement was so small, it wasn’t even on the chart at all.

What does that mean? What does any of that mean?

“Well, we’re not sure exactly.”

That’s the jist of it.

“It could mean that something is wrong with your child. He could have developmental delays and/or disabilities OR he could come out completely fine and healthy. We’ll just have to wait until he gets here to see.”

He also told us that the cerebellum measurement could be inaccurate because the baby’s head could be too low to get the correct measurement at this point. Again, he had no clue one way or the other.

I think I just looked at him at this point like YOU’RE THE DAMN DOCTOR, WHAT DO YOU MEAN YOU DON’T KNOW IF HE’S TOO LOW TO GET AN ACCURATE MEASUREMENT OR NOT?!

How could he not know??

It registered that I did not like these people.

There was nothing inherently wrong with them, but they weren’t MY kind of people. I didn’t like their lack of empathy. The nonchalant way that they delivered the absolute worst news of my life.

It was in that moment that he suggested I have him or someone from his office deliver my baby.

I couldn’t breathe.

But they have a pediatric neurosurgeon on hand at his hospital who could do a scan of our baby’s head as soon as he gets here. We could have information on his health immediately after birth.

He mentioned that he didn’t want our baby to be born at our regular hospital (one hour from our house), and them freak out and send our baby to his hospital (two hours from our house) without us, while I was recovering.

That makes sense.

I can give up some small comforts like having my doctor deliver our baby, for the comfort in knowing that should something be wrong, our baby will be in the perfect location to get the best care available to him.

We walked out of that appointment more confused than when we went in. I cried the entire two hour drive home, just spewing fears to my husband in the car.

January 6, 2021

We had an appointment with my regular doctor two days later to go over everything together. (Even though I was emotionally exhausted and terrified, I forced myself to believe that something good could come of this appointment — like maybe my regular doctor had a healthy measurement of the cerebellum or something, from before his head was low).

Side note: my blood pressure is normally insanely low. So even a regular reading for “normal” is high for me. When the nurse took my blood pressure at this appointment, it was high-high. I can’t remember exactly what it was, but she did ask me if that was normal for me, and then my doctor had her retake it before he let me leave. I was clearly stressed.

And let down.

This appointment was basically everything that we already knew (but didn’t really know).

It’s all a waiting game.

Again, I cried all the way home.

And everyday since then.

It’s honestly hard to get out of bed every single day. The unknown, and the possibility of what could be to come gets the best of me every hour of every day.

I’ve been trying so hard not to let Eleanor see me cry, because I refuse to tell her any of this and put her in our same situation. Why would I steal her joy the same way that mine has been stolen?

I was just bragging on IG stories about how much I love my doctor, and how glad I was that he would be delivering this baby; and not even a month later was hit with the news that the COMPLETE OPPOSITE would be happening. I’d be delivering with a doctor that I don’t even like. And even bigger than that, our simple little life as we know it could be changed forever.

I don’t even know how to process this. There isn’t even anything to process at this point. It’s all just up in the air.

You just don’t ever think it’s going to be you.

January 13, 2021

My last check up would be with the high risk doctor.

The car ride there was filled with slight hope. I wasn’t crying, so that was a win. I let myself believe that maybe, just maybe they would do another ultrasound and confirm that this had all been a misunderstanding. A bad angle. Some weird shadows. That our baby would be just fine.

When they called us back for the appointment, it wasn’t the same doctor as before. It was a woman this time, so I had extra hope that maybe I’d like her better than the doctor we saw before. [Spoiler: I didn’t]

Again, nothing was wrong with her. She did her job. But she wasn’t my kind of people at all.

While they did do another ultrasound, and he looked so beautiful (just like Eleanor); the ventricles were still measuring higher than usual.

And also, they found more stuff. Stuff that they didn’t see before.

I wanted to scream. And run away.

My fight-or-flight response is always flight. I shut down. I leave. I get out of the unsafe situation as quickly as possible so that I can breathe again.

I wanted to leave.

I still want to run from this.

I just don’t understand how this could be happening to us. To our baby. To Eleanor.

And so late in the game.

I know that a lot of you will cringe when you read this next part. Maybe even unfollow me and talk badly about me. Or probably add me to your prayer list. But I’m so mad that we found out when it was already too late to run from this. To have another option.

I don’t know this baby yet. But I do know that I would do anything in my power to protect my little family from struggling. Anything in my power to keep Eleanor’s life as normal as possible (whatever that means).

But it’s too late for options.

There are no viable options at this point except to “wait and see”.

So we’re waiting.

Waiting to see if our baby needs a lifelong caretaker, if he needs seizure medication, if he can hear, if he needs surgery, if he’ll be “high-functioning”.

We’re obviously being induced, since a two hour drive is not something that I plan to take while I’m in labor.

And I’m not even remotely excited.

I feel shame even typing that out.

But the biggest part of me wants to go back to the beginning of this year and be more careful. To not be pregnant right now. Since there’s no rhyme or reason to this situation that we’re currently in, I just want a redo. Since I can’t just go back a few months and correct whatever went wrong, I wish I could go back and just undo it altogether.

It truly sounds terrible. But I’m not one of those people who cringes at the thought of terminating a pregnancy for scary medical reasons. I’m not someone who would be willing to walk the harder path just because it’s “the right thing to do”. No, that’s not me at all.

I’m FLIGHT, remember?

So to recap: this pregnancy started out rough. I wasn’t surprised that I had first trimester sickness (I also had that with Eleanor). However, I was surprised that I was pregnant at all. We had discussed maybe expanding our family in the future, and I was truly open to the idea at the time; but the moment I peed on that stick and saw two lines instead of one, I realized that I would’ve never moved past the “talking about it” phase. I didn’t want to be pregnant. I didn’t want to start over. I was barely surviving, much less thriving in my day to day. How could I ever be enough for two kids when I already struggled to show up 100% for Eleanor??

And then the sickness wore off. I convinced myself that this time around would be easier. We had already done this before. We knew what to expect. It would still be hard, and we’d still be exhausted for the first year, but it wouldn’t be the slap in the face that going from zero to one child was.

I let myself get excited for the first time. I let myself think of how our four seat dinner table would be full. How both barstools in our kitchen would be occupied by little Sumner kiddos. How Eleanor would be the best big sister.

And I got excited.

And now here we are. Nothing is going as planned. Everything feels chaotic. And my joy is gone.

I don’t want to whine. This could very well turn into me whining.

So I’m going to stop here.

I wanted to share this with y’all, and I knew that if I waited until he’s born; I might not ever share it. I might not have time. I might not make time. I might not be courageous enough.