Rules for Visiting After Baby Arrives!

Scary Stepmom

This blog isn't just about being Roman's momma. I also have a stepson named Coleman who is 7 years old. We had a situation Thursday night which I will now admit, I didn't handle well.

If I'm going to be honest with myself, the main feeling I'm experiencing is just embarrassment. But because of my embarrassment, I reacted with anger.

Stepmom of the year award, right here.

So, Thursday night around 9:30, I had just put Roman to bed. I was so tired, I would have preferred to put him to bed at 8 and go to sleep myself, but Coleman needed to be put to bed, and Josh wasn't around to do it.

Exhausted, I went downstairs and--I'll admit it--did some lazy parenting. Usually we have this whole bedtime routine involving scriptures, prayer, a Primary song, and sometimes even a family snuggle session. This time I just told him to turn off the tv, brush his teeth, go potty, and go to bed.

I know. I can feel the judgement coming from you already. Don't worry, it gets worse.

Thinking that I was free and clear of all parenting duties for the night, I put a pot of water on the stove so I could make some herbal tea. I also set the timer for four minutes because I often turn on the stove and forget all about it until the water has evaporated and the house is filled with smoke.

I had four minutes until my water was done boiling. I thought to myself, it's been a few hours, I'd better go into the bathroom and address something in the feminine hygiene product department (good ole' "Aunt Flo" has come for a visit for the first time in 16 months). I went into the bathroom. The bathroom is connected to our master bedroom, and that door leading into the bedroom was open, but both the bedroom door and the bathroom door leading into the hallway were closed.

So there I was, in a very compromising situation: pants down, attempting to remove a certain feminine hygiene product from my body (let me know if I'm being too graphic. I really don't know any other way to say it), when suddenly, I look up. Coleman is in the master bedroom, he has just seen the unthinkable, and now he is running out of the room as fast as he can.

Horrified and embarrassed, I did some quick thinking. If it had been anyone else I probably would have screamed at them. In a fit of rage, I would have told them off. But this was Coleman. He's seven. And he's a good kid. If he knows he's going to get in trouble for something, he generally doesn't do that thing.

But I was still angry, and, I repeat, SO embarrassed. I was absolutely mortified at what I know he has just seen. So I said in a voice louder than necessary,

"Coleman you need to knock!"

"Okay." I could hear the despondency in his voice.

"What is it you want? You're supposed to be in bed!"

"I just wanted to know what you want me to do now."

It's not completely his fault that he was unclear about the next steps after brushing teeth and going potty. After all, he's used to our regular bedtime routine. In my rational mind, I know this. At the time however, I wasn't using rational thinking.

"I already told you! Go to bed!"

It's like I said before. Stepmom of the year.

So he went downstairs, probably feeling just as embarrassed as I was, plus now he has just been yelled at for something he totally didn't mean to do.

Don't you wish that when you're in a bad mood, you could just hide all alone in your closet and send out a happy clone of yourself that will play with your kids, give them hugs, and never lose patience with them so that you don't have to risk taking your bad mood out on them by flying off the handle when something they do is mildly annoying?

Yeah, me too.

So I finished up, feeling horrible about what just happened, when suddenly the smoke alarm went off. The whole house was filled with smoke. I looked at the stove.

It was ON FIRE.

Could this night get any worse?

Apparently I had turned the wrong burner on, and without a pot on top of it, it had gotten too hot, and there must have been some food at the bottom of the burner (from a previous meal) that caught fire. Just then, the four minute timer I had set went off. It's the type of timer that doesn't stop beeping until you press "off". So I had the timer AND the smoke detector going off, and a fire on the stove to put out. I grabbed the biggest pan lid I could find and dropped it onto the blazing burner to snuff the flame. I pressed a button on the stove to turn off the stove alarm. Now I had to deal with the smoke alarm, which was still going off. I thought for sure Roman would wake up. Luckily, he didn't. In my state of panic, I couldn't think of anything to wave at the smoke alarm to get it to stop. There were no magazines or newspapers around. So I grabbed one of Josh's jackets and flung it around like a maniac at the smoke detector until it stopped. When it finally did stop, I laid down on my bed and just sobbed--out of exhaustion. Frustration. And, remembering the incident with Coleman, total embarrassment.

The next morning Coleman felt terrible. He told Josh that he felt bad because he walked in on me going to the bathroom, and then he heard me crying. He hadn't known there had been a fire. I told him I was crying because of the fire, not because of the bathroom thing. The truth is, the bathroom thing was a big part of it. If Coleman had been my own flesh and blood, this would have been a total non-issue. I would have been used to getting walked in on ever since he could walk. But there is a certain standard of privacy on both sides that is expected when you're the stepparent. While I did help him take baths when he was four, I don't think it is appropriate for me to see him naked now that he is seven. If he'd walked in on me in the bathroom when he was four, I don't think it would have been such a big deal. But he's seven. He's old enough that he might remember this for the rest of his life! I don't think embarrassment would ever be an issue if he was my son (not my stepson), because he likely would have seen it before and we would have a closer relationship than we do.

Being a stepparent is hard. Being any kind of parent (stepparent, grandparent, fosterparent, or just plain parent) is hard. I guess we're all just trying to make it through their childhood without screwing them up too much.

I Am Not Crazy. Right?!?

I hesitate to post this. I don't want to be thought of as a nutcase. But this has been gnawing at me all day.

You see, earlier this afternoon when the house was otherwise empty, I was holding Roman as he snoozed away in my arms. He was doing the cutest thing where he would make the sucking motion with his mouth, even though there was nothing in it. So I thought to myself, I should definitely get video of this. So I did, on my phone. Then, because I had nothing better to do, I watched the video right away.

The video seemed to pick up a lot more noise in the room than I actually heard. It was pretty quiet in the house. How do I put this? The video seems to have picked up a specific noise that I hadn't heard at all as I was taking the video.

I've watched the video a hundred times to be sure. I keep thinking, maybe that noise was just coming from Roman somehow.  Or some sort of other explanation that makes more sense than what it sounds like it is. All I know is, the sound in the video didn't come from me.

Oh gosh. I've stalled long enough. Just watch the video. The sound I'm referring to happens about 6 or 7 seconds into it (it's a 10 second video). It's VERY subtle and VERY quiet, so the best way to watch this is with headphones, or with speakers turned up loud. I realize that this sounds like I'm trying to trick you so that I can show you something with a scary and loud surprise ending, but I can assure you that this is not the case.

Ok. Now you watched it. What does that sound like to you? I thought it might be Roman's nose whistling or something. But I don't think it is. To avoid sounding like a total crazy person, I think I'll avoid saying what I actually think the sound sounded like. At least until someone else confirms my theory.

The Cause and the Blame

Imagine you are driving along the freeway, going the speed limit. It is a beautiful, clear day. The only passengers in your vehicle are your two brand new babies: twin boys, only days old. You have safely strapped them into their car seats in the back seat. They are fast asleep.

Now imagine that out of the clear blue, a drunk driver swerves into your lane from the left. You try to swerve to miss him, but it's just too late. With a deafening sound, the back of your car slams into the other car. You come to a stop.

One of your babies is dead. The other has severe damage to his brain. Your lives have been forever altered by this one moment.

Now, in spite of the fact that it was a drunk driver that caused the accident, you would blame yourself. You would think that maybe it wouldn't have happened if you had just taken a different road, or left a few minutes earlier or later, or not left the house at all. Or maybe if you'd braked sooner or swerved differently. If you'd just done something - anything - different. Then both of your boys would be alive and perfectly healthy.

 That car in the example above was not a car, it was my body. And that drunk driver was not a drunk driver at all, but a virus called cytomegalovirus, or CMV. My babies were just fetuses, at only eight weeks gestation. Somehow around that time, I became infected with that virus and as a result, my "Little," my Raven got sick and then sicker, weaker and smaller, until at 23 weeks gestation his tiny, once beating heart gave out. Then it started on Roman. It got into his head and just feasted on his brain. And all I can think is: It's all my fault.

If only I'd taken more vitamins.
If only I hadn't left the house and exposed myself to the virus.
If only I'd taken better care of myself, my immune system would have been able to fight it off.
If only I'd washed and sanitized my hands more frequently.
If only I'd just been more careful in general.

Raven would still be alive.

Roman would be a healthy, normal baby.

If only.

I brought up the drunk driver example to illustrate my feelings on this because in that example, according to the rest of the world, of course you're not at fault. How could you have predicted that happening? But no matter how many people try to talk sense into you, it doesn't change the fact that it happened and there were a dozen things you could have done to prevent it. And you didn't do those things. And your baby died because of something you did or didn't do.

 Just today I was given the results of a recent ct scan that was performed on Roman, which revealed calcifications on his brain. This indicates that he was infected by the CMV virus early on during pregnancy. We need to find out if he is still infected, because if he is, it could cause further neurological damage and possibly even hearing loss.

I will leave this on a positive note: The good news we received today is that Roman will NOT need surgery to reshape his skull! He will most likely just be fitted with a helmet. Maybe we will have it painted like this:

An Update on our Little Roman

It's been a while since I posted on here, and I'm frequently asked about Roman's diagnosis, so I thought I'd give everyone an update on Roman.

First off, he is doing really well. He is exceeding all the doctors' expectations with how well he is doing. He is hitting his milestones like smiling, eye contact, baby talk, rolling over, etc. He hits them late, but he still hits them, and that is what matters.

We found out that the reason for his microcephaly is because some parts of his brain never developed while in the womb. The reason this happened is likely a result of his twin Raven being so sick during gestation. With monochorionic twins, everything is shared, including blood flow. Raven was very sick and had poor blood flow pretty much the entire 23 weeks he lived in my womb. Because of this, Roman's blood flow suffered, and his brain failed to fully develop as a result.

The good news is that the blood tests showed that Roman does not have a genetic condition. The bad news is we will never know what it was that made Raven so sick or what ultimately led to his death.

The doctors are unsure as to how Roman's brain deformity will affect his development. We've been told he may never walk or talk, but we are hopeful that Roman will prove them wrong. He has already surpassed everyone's expectations so far.

Roman also has something called "hypertonia". It is a condition that causes his muscles to be rigid all the time. I couldn't figure out why he would push against me so hard with his arms as I tried to nurse him, while his mouth would be rooting like he wanted food. That answer came with the hypertonia diagnosis. His hypertonia causes his arms and legs to just be straight and rigid most of the time. He can bend his limbs of course, but even when they are bent they are very rigid.

We are often asked what will happen with his head. Will he need surgery to reshape it? Can it be reshaped with just a helmet? We still don't know, but we're hopeful that we will have this answer soon. His head has rounded out slightly on its own though. I was recently comparing photos of his head taken at 6 weeks with what his head looks like now. There's a big difference.

6 weeks old


4 months old

Regardless of what the future holds, we wouldn't have asked for a different baby. He is so sweet and cuddly. He is a great sleeper and has been sleeping through the night since he was six weeks old. My heart melts when he smiles and when he coos. I never knew how much love my heart could hold until I met this boy.

Abandoning My Child

I've never felt so much dread in my whole life. I feel sick to my stomach--completely panicked down to my very core. Every muscle in my body is rigid with apprehension and anxiety.

Tomorrow is the day.

The day I go back to work.

The day I abandon my child.

It's an event I've looked to with fear and dread for twelve weeks. Now, don't get me wrong. I like my job. It isn't the job I'm dreading going back to. It's the child I'm leaving behind. I've never been away from him for longer than a few hours. And I wish I didn't have to, to say the least.

Three months I've been racking my brain, trying to come up with a way out of going back. A way to avoid leaving my sweet, beautiful baby to be cared for by someone else. During my darker moments, I've imagined myself abandoning all reason and quitting my job so I wouldn't have to make the choice to leave him. But then I remember: quitting my job would mean losing our house. It would mean going broke in just a few months. Worst of all, it would mean we would lose our health insurance. And boy, are we using that more than ever. No, I couldn't do that to my baby either. I don't have a choice. I have to go back. Sometimes being a grown-up sucks.

Before Roman was born, I had no idea how excruciating it would be to go back to work and just leave him. I just thought, "This is what people do. They have their baby, they take a few months off, they go back to work. And that's that." But it is so much more than that. I am leaving a part of me behind.

To me, the idea of handing my child to someone else and leaving him for several hours at a time every day is the equivalent of willingly having my fingernails ripped from their nail beds one by one, day by day. It is the cruelest of all tortures. I don't think I can do this. I don't know how I am going to be able to go through with it. The panic is crippling. All I can think is, "There's got to be another way. Please let there be another way."

Until then, I'm wallowing with my "mini" chocolate peanut butter brownie shake from Iceberg. It dulls the pain a little.

*Note: I realize that some working mothers may take offense to the insinuation that working outside the home when you have children is the equivalent of abandonment. It isn't. (Unless you are going to work and leaving your child home alone, then yes, that is technically abandonment.) This is simply the description of how it feels for me personally to leave my own child as I return to work, not a judgement or criticism on other moms for working outside the home.

The Great Run-Around (aka the Worst Doctor's Staff. Ever.)

I am fuming after today's events at the hospital. I think the reason this situation is so frustrating to me is because I have long held the belief that if someone else isn't doing it right, do it yourself, and unfortunately when it comes to serious medical situations, I cannot "do it myself". I have to rely on others. In this case, "others" are seriously letting me down.

Let me start out by saying that I really loved my doctor. He was my OB when I was pregnant and he was our pediatrician ever since Roman was born. He's got great bedside manner, he's personable, and he always make you feel like a million bucks.

That being said, with the events that have transpired since Roman's birth, I think I might have to switch doctors.

It all started with Roman's first Well Baby visit to the doctor one week after he was born. We expected to have the circumcision done during that visit because, well, that is what our doctor told us would happen, since he was not able to perform it while we were at the hospital. The appointment was scheduled for 4 pm. When we arrived, we were told the doctor had just been called out to deliver a baby. We would have to see another doctor.

"Will that doctor perform the circumcision during this visit?" we asked. We were told that Well Baby visits are never combined with Procedures and that we'd have to make a separate appointment. A minor annoyance, but we dealt with it.

We sat down in the waiting room and waited. And waited. And no one called our name. By 5:30, we were the only people left waiting in the waiting room. We thought for sure they would call our name soon.

6:00 rolled around, and a nurse noticed us sitting there. She asked the lady at the front desk, "Is there a folder for this patient?" They had forgotten to put Roman's folder out, so the nurses didn't know there was anyone they needed to call into the back. We could have been seen much earlier, but because of the mistake we were kept waiting for two hours.

When we were finished with the doctor, we came back out front to schedule his circumcision and 2 week Well Baby visit. The lady at the front desk that was helping me didn't know the answer to one of my questions, so she went into the back to ask one of the nurses. Meanwhile, Roman is screaming at the top of his lungs because he hasn't eaten since before we left home (2 and a half hours prior). I could hear her and the nurses chatting and giggling loudly about something that happened in one of their personal lives. She stayed back there chatting and didn't come back to the front desk for a full ten minutes, while I was left with a screaming, starving newborn.

Because Roman was born with an obvious skull malformation, which is believed to be craniosynistosis (but may or may not be more than that), we were told we needed to see a plastic surgeon. So we drove all the way up to Primary Childrens in Salt Lake City, paid our $30 copay, and met Dr. Siddiqi, who told us, "I can't really tell what's wrong. His brain might not be growing, but there's no way for me to tell. He needs to see a geneticist. There's nothing I can do until a geneticist has diagnosed him." This was more than a bit of an annoyance, but what could we say or do? Ask for our copay back since this doctor literally did nothing for us? Probably not.

We left the hospital and immediately called our doctor's office to ask that they put in an order for us to see a geneticist. They called us back within the hour and told us that there is a ONE YEAR waiting list to see a geneticist at the Salt Lake City Primary Children's. We told them we would travel anywhere in the country, if another geneticist could see us sooner. A few days later, they called us back and said that the nearest locations without a waiting list are Seattle and Phoenix. One of them would be calling us within the next week or so.

A week later, I received a call from someone at the Seattle Primary Children's Hospital. The lady on the phone asked if Roman had had any genetic testing done. He hadn't. She recommended that he get the genetic testing done and then at that point we should make our way out to Seattle to see the geneticist. She let me know that our primary care doctor needed to order the genetic testing, and that if he had any questions as to exactly which genetic testing needed to be done, he should call the geneticist at Seattle Primary Children's.

So, I called our doctor's office again. I relayed this exact message to the lady with whom I spoke. She asked me for Seattle Primary Children's phone number. I gave it to her, thinking that it would be used for the doctor to call the geneticist so he would know what genetic testing to order.

That phone call happened last Monday. I let a week go by and I never heard from them as to whether or not the order for the genetic testing had been placed. So I called them again yesterday. I asked if the order had been placed; they said yes, there is an order for genetic testing to be performed at Seattle Primary Children's.

"What? No!" by this point, I was exasperated (little did I know this was only the beginning). "I didn't ask for the genetic testing to be performed there, the whole point was to get it done here so that we could have the results already when we speak with the geneticist there." I'd been questioning the competence of the staff at my doctor's office for some time. At this point there was no question in my mind. Completely incompetent. Every last one of them. Every time I speak with them, they mess something else up.

The woman I was speaking with didn't sound the least bit apologetic. "Ok, well you probably should have clarified that when you asked for the doctor's order. What hospital do you want this doctor's order to be sent to?"

"I don't know! You're the medical professionals, right? Do I need to get this done at Primary Children's in Salt Lake? Or Utah Valley Regional in Provo?" Do I have to do everything for these people?

She told me to hang up and find out myself which hospital I should get the blood work done at. Apparently I do have to do everything for these people. I called UVRMC and they said they could do it there. Thank goodness. I called my doctor's office back and got a different lady.

"I was just speaking with Jean. Could I speak with her again since she's familiar with my case?" I was so afraid that someone would mess something else up. And I didn't think I could handle the rage that might stem from within my very core if such an event were to happen. But alas, Jean was unavailable. So I tried to explain my situation to this other person.

"I just need one doctor's order for genetic testing to be performed on my son at UVRMC. And again, if the doctor has any questions about which genetic tests to order, he may call the geneticist at Seattle Primary Children's. And this time, please have someone call me once that order has been placed. Thank you."

A few hours later, someone called back and informed me that the order was at UVRMC. I could now take Roman to get his blood work done.

Which brings us to today.

I made sure his tummy was nice and full. When he was done eating, I put the binky in his mouth (since he's decided he absolutely cannot live without it). I buckled him in his car seat. I put his binky back in his screaming mouth. I tucked a receiving blanket around him to keep him warm. I put his binky back in his hollering mouth again. I grabbed the diaper bag, keys, and phone. Binky back in mouth. I loaded him into the car. Binky. Mouth. Repeat. (Can I just say, traveling with a baby is a thousand times more complicated than doing so without one.)

Once the car was moving, he fell right asleep. He and I drove to Utah Valley Regional Medical Center, laboratory wing. After a short wait, we were called up to Kiosk 1. The woman behind the desk was very nice.

"Roman Keil, right?" she ascertained. "Yes," I replied. Although I was not looking forward to my baby getting poked with a needle and his blood drawn, I was relieved to be taking the first real step toward some answers.

"So, what genetic tests exactly need to be performed?" the woman behind the desk asked me. My heart sank. If the doctor's order had been done correctly, they would KNOW what tests to perform! She showed me the doctor's order form.

There. On the right. "Genetic Testing". Someone (the doctor? One of his staff?) ordered "Genetic Testing". Nothing specific. No clarification phone call was made to the geneticist in Seattle. Someone was obviously much too busy with more important matters than my child's possibly debilitating HEAD CONDITION that they couldn't spare a few minutes of their time to call the geneticist in Seattle to find out which genetic tests to order. Instead they had to waste MY time since it is clearly less valuable than their own.

In conclusion, I think that was the final straw. No matter how much I loved my doctor, I just don't think that I could possibly bring myself to return there. Maybe I need to find a less busy office. An office that cares more about their patients. To this office I'm just a paycheck. And when I'm not paying (for example, when I call and ask them to perform simple tasks like putting in an order for genetic testing and calling the geneticist if they need to know which tests to order), they couldn't care less about the task and they waste my time by doing it wrong. Time after time. And I'm done. I'm officially fed up.