The Things That Shape Us

The last couple weeks have been a whirlwind of worry, a near-constant sinking feeling, and lots of tears.

Both boys needed 100% of me at the same time.

First, Paxton had his 1 year check-up. His milestones seemed to be okay. Not great, but okay. And we all know kids kind of move through them at their own pace. I, nor his pediatrician, were at all concerned.. until she noticed his head circumference. Yes, it's big. Off the charts kind of big. And it has been since birth. But instead of plateauing along with the growth chart, his just kept a steadily increasing line. So, to be safe, she ordered an MRI to check for any fluid or pressure on the brain. She informed me that because of his age, he would have to be put under to get clear images.

My heart sank.

It was scheduled for last Wednesday (3/23).

While waiting for the MRI appointment to come, Greyson had his one month check-up. Pediatrician was concerned about head shape. She had been early on with Paxton too, but instead of just sending us to a specialist for a physical exam, she ordered a CT scan. This indicated to me that she was more concerned than she was with Paxton at the same age. She specifically wanted to check for craniosynostosis (premature fusing of one or more of the skull plates).

As we left that appointment, I let it all show. All my fear. My despair. My overwhelming feeling that enough was enough.

Every emotion was boiling up inside of me.. from the mundane to the extreme. "We can't afford this. We're living basically paycheck to paycheck. MRIs. Neurologists. And what if something is wrong? What if they need surgeries? How far can we travel? You don't have any vacation time. And we can't lose a paycheck. What if something is seriously wrong? These are my boys. My baby boys. They need the best.. but how?"

Then, I got mad. At everything. At the universe.

I cried to Brad, "TWO of our babies died in my arms. Isn't that ENOUGH?! I can't do this. I can't deal with this. They HAVE to be okay!"

And I knew he understood exactly what I was feeling. But the truth is.. I can do this. And I have to deal with it. Nobody else can do it for me.

When your babies need you.. you can do a lot more, and survive a lot more, than you ever knew was possible.

So, first, the MRI.

We were told Paxton could not eat after midnight before the MRI, and the MRI wasn't until 10am or so. So, we were immediately worried about how he would cope with just that. He's a huge breakfast eater, after all. But, he actually did just fine.. with lots of water and apple juice at 7am.

Because of flu restrictions, one of us had to keep Greyson in a waiting area, so only one of us could go back to the prep area with Paxton. It was me. They went through a pile of questions as they had me change him into a gown. Then we waited for anesthesia to come and talk to me and explain each step, risks, how he would likely be when he woke up, and so on.

I felt gutted as I was signing the consent forms. Yes, I know driving the car is actually far more dangerous statistically. But there is no logic when you know you're signing up for an added risk. But, I knew it had to be done.

They allowed me to go back with him while he was sedated. First they put a mask on. He didn't fight it at all. He just looked at me with his big eyes. Staring at me for reassurance. And after a few breaths, he was asleep. They had me kiss him and walk out before they placed the IV.

I headed to the waiting room where Brad was sitting with Greyson. I started to tear up as I explained what it felt like to watch him being put under. Had the waiting room been empty, I'm fairly sure I would have been sobbing. Luckily, it wasn't, so I just took a few deep breaths.

We waited a little over an hour. They came and told me he was waking up. So, I started walking back, expecting his eyes to be open, or at least rustling around in the bed.

Instead, I walked into a dark room, his head was tilted back in a very unnatural position, his eyes were closed, sheets covering his entire body and neck, and the only lighting in the room was the glow from the monitors and a dim light behind his bed. It almost stopped me in my tracks. He looked.. gone. And I was not prepared.

So I stared at the monitors. Watching his heart rate to reassure myself he was alive. The nurse was talking to me, but I was just glancing back and forth between the monitor and his face. Finally, it sunk in that she wanted me to start talking to him.

I started to say his name, and told him that he did so well. His heart rate would climb every time I spoke to him. My baby boy was in there, and he knew his mother's voice. <3

He woke up gradually, but perfectly. They warned me that some kids will scream, cry, have tantrums, etc. Many also get sick when they try to drink or eat after waking. Paxton was chill as always. Woke up, and started sucking down apple juice like no tomorrow. No sign of nausea at all.

So, we were off.

And literally as we were leaving Riley, we got a call that Greyson's CT was scheduled for April 1st, and then we were going to meet with a neurosurgeon at Riley on April 8th. Clearly, my pediatrician was concerned enough to schedule both. I didn't even get a full car ride to process the MRI before I had to worry about the CT for my other child.

So while waiting on the MRI results (we were told it would be 3-4 days), much against common sense, I began to Google everything craniosynostosis. I had briefly researched it when they were worried about Paxton's head shape, but it was a casual look at best. This time, I was bookmarking information, searching for specialists, joining support groups to ask questions. Full panic mode.

By Monday, I was in a downward spiral. Convinced one child would need skull surgery and worried the other was going to have bad MRI results.

Then, on Tuesday morning, I got a call from Riley saying they had a cancellation if we'd like to come in early for Greyson's neuro consult. "We have an opening on the 30th." ("That's tomorrow," I thought to myself.) I informed them the CT wasn't scheduled til the first, so that wouldn't work. Well, their nurse got on the phone and got the scann
 moved up to that day. I literally had three hours notice to get showered, the kids fed, fit in naps, and off we went.

As I walked in with the double stroller, the tech looked a mix of puzzled and amused. "Soooo this one is 5 weeks. How old is this guy?" "Almost 13 months," I replied. She gave me a smirk. "Girrrrlllll. Do you ever sleep?"

One of the staff members occupied Paxton in the hallway while I stayed with Greyson. As the tech was handing me the vest, "Any chance you could be pregnant?" she giggled. Noooooope. I got all vested up and stood by him. But, he didn't need me. He actually started to fall asleep when the machine got loud.

They told me a doctor had to make/review the disk of images, but that they could be picked up later. They would call when it was ready.

A couple hours passed. I spent most of that time pondering if I should try to look at the images when I got the disk. Even if it loaded on my computer, would I have any idea what I was looking at? Would I just worry more?

They finally called, said the disk was ready at the front desk, and then she ended the call with, "Good luck."

Whyyyyyyyyyy did she say that? I immediately was reading into it. "She KNOWS something is wrong. Otherwise she would have just told me to have a nice night."

So, when Brad got home with the disk, I popped it in my laptop. Yes, it opened. No, I didn't know what the hell I was looking at. Yes, some sutures were really obvious and open. Soft spot was there. But clearly, I would have no idea if one suture was fine while another was just starting to fuse. So I closed the computer and tried to make peace with waiting one more day to find out if my littlest was going to need surgery.

As we finished dinner, we got yet another phone call. It was Paxton's pediatrician. She was calling at 7pm, and wanted to be put on speaker phone so we both could hear. "The MRI results came in."

My stomach twisted into a million knots.

"Well, he doesn't have any fluid or pressure going on. That's the good news."

... I hung my head.

"But there are some areas of concern. The MRI did show spots of scar tissue, and evidence of a bleed or stroke."

Tears started to fill my eyes.. This has to be a mistake.

I think she knew my short answers were indicative of me falling apart silently, so she was quick to then reassure us, "I know this all sounds really scary. But I talked to a neurologist at Riley because I didn't understand the results when they arrived, and I wanted to be able to answer your questions. They said these look like old trauma, possibly from birth. (Paxton had coded right after birth) And the reality is that lots of kids may have this, and never get scanned, because they happen to have a smaller head size. Kids brains are able to compensate even better than adults. He may have no issues whatsoever."

We asked a few questions, but since she's just his pediatrician, we knew more complex questions would have to wait. The gist was that there are "small" areas of damage. We don't know if or when we might see any fallout from it. And for now, it's just keeping an eye on him and doing some blood work to make sure there are no clotting issues that would indicate any clotting disorders or risks for stroke.

But before we got off the phone, she noticed Grey's CT results from earlier in the day were in the system. So she opened the report. "No signs of craniosynostosis."

I asked her to read it again.

"I promise. It says he's fine."

I felt torn. Such relief about Grey (though I still wanted the neurosurgeon to confirm), while just starting to process everything with Paxton.

As parents do, we started to assess our own guilt. Brad started to wonder if he passed on a clotting issue, since his mother died from a stroke in her 50s. I began to wonder if I had passed a clot or became too dehydrated prior to birth. What if I hadn't gotten an epidural and pushing went faster?

The what ifs are a flood of self-torture. I tried to quickly quiet those voices.

I began to read up on infant stroke and brain damage during birth. I was surprised to find out that the highest risk for stroke in your lifetime is actually at or near birth. Even without a 'traumatic birth,' just the act of being born is a cause. They estimate it happens to 1 in 3000 to 4000 births. But since many are never tested, it's hard to know for sure.

Then I started diving into all the negative outcomes. More likely to have ADHD, cerebral palsy, seizures... I had to stop. Well, first, I had to break down. Bawl my eyes out. Then, I had to stop.

So, today, we went to Riley with a mix of a bazillion emotions. Part of me still fearing the radiologist was wrong. The other, overwhelmed with the news about Paxton.

I half-jokingly told Brad, "If I start crying, I wonder if she'll look at Paxton's MRI for us.."

I knew she was a surgeon, not a neurologist, but since the specialties overlap, I knew she'd be more adept at reading the results than our pediatrician.

Well, I didn't cry...

Instead, when she asked about family history, I added, "And we just got the MRI results for our other son. We're not sure what to make of it, but it's not great."

"Where was it done?"

"Here at Riley."

"Oh, I'll take a quick peek when I look at Greyson's CT scan."

I didn't tell her we saw the CT results. I wanted her to confirm without any bias. Sure enough, she came back with, "Well, this little guy has no serious problems. Looks like he just prefers to lay on one side, so we'll just watch him and check up in 3 months."

And I wasn't expecting much about Pax, since it was Greyson's appointment, but she did say this: "I did look at the MRI. There's nothing that would require surgery. Nothing I'd get too excited about" (such a surgeon thing to say). She then added, "It shows specks that are underdeveloped," as she held up her hands to gesture that something was tiny, by holding her thumb and finger together as if holding something the size of a Tic Tac. "Really, nothing I'd worry too much about."

And that was it. I knew I'd have to save my questions about long-lasting impact for a neurologist. And I couldn't help but notice she said "specks." So, are these areas smaller than I imagined? And I was reassured, somewhat, that a 'brain' person acted as if she wouldn't worry. But it will be a couple weeks until we can get ALL the details and questions answered.

In the meantime, I'm trying to stay positive. Grey, as of right now, seems to be just fine. Paxton, is standing, playing, giggling, and as of tonight.. learning to use a spoon.

Of course I wonder about the future. And how I'll have to remind myself that even if he is slow to talk, or bad at math, that may just be WHO he is.. and in no way related to any damage.

So, for now, I'll do my job. And my job is to worry.. and to love.

I'm exceeding at both.