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.

Roman's Birth Story

Wednesday, August 20th

     11:30 am - Dr. Berry's office.

"We have our ultrasound scheduled for 3:30 pm today," I told Dr. Berry. "Every ultrasound we have had has given us bad news. We're so close to our due date, can't we just skip today's ultrasound and spare ourselves whatever heartache that's sure to ensue?"

He told us that he didn't think that it would be a good idea to miss the appointment. Today's ultrasound might clue the doctors in more about what is going on with Roman. The news may be difficult to hear, but it is necessary so they can have all the information that they can possibly have about Roman's health, so there are no surprises when he is born. We conceded - we would go to the ultrasound if we had to.

Before we left the office, Dr. Berry checked my dilation: 3 cm dilated, 80% effaced. That was some encouraging news to hear.

     3:30 pm - Ultrasound Room at the Maternal-Fetal Medicine wing of Utah Valley Regional Medical Center

The ultrasound technician performed the usual routine - check the heartbeat. Measure the head circumference. Measure the abdomen. Measure the femur. Check the blood flow in the umbilical cord. She didn't say much. I kept quiet as well. I didn't want to be there in the first place, and I was in a bad mood because they (for the second time in a month) screwed up the scheduling of my appointment - having given me an appointment card that said 3:30 pm and putting my appointment in their computer as 3:00 pm. We'd arrived at 3:30 and they told us we would have to wait because we hadn't shown up when we were supposed to.

The ultrasound technician left the room. Josh and I had talked about this next moment and had agreed that he would talk to the doctor and ask that she break whatever news she had for us gently.

Dr Feltovich walked in.

"Can I speak with you outside for a moment?" Josh asked her. She looked at me, making sure I was ok with this. I told her it was alright, I didn't mind him speaking to her without me present. They stepped outside the door. I waited.

Within a minute, they were both back in the room. Dr. Feltovich had a reassuring smile across her face.

"Josh just asked me to go easy on both of you when I tell you what we've seen in the ultrasound today. But that isn't necessary! Because today I have good news!"

I was surprised. What good news could she possibly have for us, after the last ten ultrasounds have given us nothing but hopelessness and despair?

"You get to have your baby today!"

It hit me like a ton of bricks. I should have been excited, but my stomach just sank. The laundry wasn't done. The house wasn't clean. The picture frames we were going to make and hang on Roman's wall were unfinished. There was still so much to do! I thought I was going to have a whole other week to do it! I wasn't ready for this baby to come just yet!

"Why today?" Josh asked. "What did you see on the ultrasound that would make it so he has to come out now?"

She remained cheery and upbeat. "Well, three weeks ago his abdomen was measuring 36 weeks, and it measured 36 weeks today, which means he is no longer growing. The womb is no longer the best place for him. If we get him out today, we can get him the help he needs so he can start to thrive!"

I told her about my concerns; about not feeling ready. "Can we go home first?" I wanted to eat something, give the house a quick cleaning, fold and put away the laundry, and grab our hospital bag.

"I'm afraid I can't let you leave," she told us. "You're going to have to go straight up to Labor and Delivery so they can induce as soon as possible."

~

4:15 pm

We checked in on the 5th floor: Labor and Delivery. I put on the hospital gown (note: that thing was awful. With my next baby, I am definitely bringing my own). We called our doula, Alie Jenkins. (who by the way was amazing throughout the whole ordeal. I plan on hiring her for all my future births.)

Me, right after I put on the hospital gown. Man, I was SWOLLEN. Just look at my hands.

We would have started the induction right away, but I wanted to get a Priesthood blessing before we got started. They got me started on the IV and began pumping saline and antibiotics into my system (I had tested positive for Group B Strep). Before anyone arrived, I said a silent prayer. I asked that all would go well and that my mom (who passed away when I was a child) would be there in the room to comfort me and give me strength. My father-in-law, Richard, and my younger brother, Alex showed up to administer the blessing. One of the things that was said in the blessing was that my mom would be there in the room with me as I went through labor and the birth of this baby. I burst into tears when those words were uttered because it was a direct answer to my prayer. What a testimony building experience. 

My brother and I right after the blessing.

7:00 pm

A team of doctors and nurses showed up in the room to break my water. I had asked that no Pitossin be administered and that if we were going to induce, that we should first try the most natural methods. As they were about to break my water, the doctor who was performing the procedure said she could feel his little hand resting on top of his head. That was incredible to me that she was physically touching my unborn baby. Roman felt more real to me in that moment than he ever had. Soon, I would be able to see and touch this baby that I'd carried and cared for for so long. 

Getting my water broken was uncomfortable and painful. It felt like someone was reaching in and physically causing menstrual cramps by pushing on my uterus. Then when the bag of water popped, the feeling was even more strange. I felt as if I'd had a whole ocean inside of me that escaped all at once. 

Surges (contractions) began subtly at first. As the hours went by, they increased in intensity. The nurses insisted that I stay connected to the monitors because they were concerned with the baby's heart rate, which seemed to drop significantly every time a surge happened. I kept having to use the bathroom though, which worked out nicely so I didn't have to stay attached to the monitor the entire time. It felt great to labor on the toilet, where I could just relax and not have to worry about "holding anything in" or worry about what the monitors were saying. The monitors were wrong the majority of the time about my surges. Most of the time they didn't even pick up on the surges I was having. 

11:15 pm

We began using some Hypnobirthing relaxation scripts to encourage surges. This must have worked, because by midnight, the surges increased in intensity and consistency. The next two and a half hours were the most difficult hours of the whole experience. The surges felt exactly like like menstrual cramps. Not painful per se, but extremely uncomfortable. I wouldn't describe what I felt as "pain". I'd always wondered how the intense cramps I've experienced in the past would compare with labor. The only difference between the two (for me at least) is that these cramps made me incredibly nauseous. Let's just say I vomited a significant amount, numerous times. We'll leave it at that.

The slow dance position was one of the most comfortable positions out of all the positions I tried.

Thursday, August 21st

1:00 am

I secretly began to consider getting the epidural. My discomfort wasn't unbearable yet, but I had a lot of fear about what was coming next. I had thought I'd eliminated my fear. I'd definitely worked on it with Hypnobirthing. I was much less fearful than I would have been. But the discomfort from the surges was greater--or perhaps just different--than I'd expected.

2:15 am

I felt I could no longer relax through the surges. I tried to utilize the "low moan" technique, as our doula Alie suggested, but even that was a struggle. The sounds came out more like high-pitched cries at first, and it took every ounce of concentration I had in me to lower their pitch. I was so tired. I hadn't slept much the night before, as I hadn't anticipated going through labor on this night. The vomiting only contributed to wiping me out. I didn't have anything left to give. I needed sleep. As I sat on the toilet, I waited until my body finished a surge. Then I told them I wanted an epidural.

2:25 am

The epidural was not "uncomfortable" as I previously described my surges. It was PAINFUL. But only for a minute. Then I began to feel numb in my lower abdomen. It was such a sweet release from the hours of surges I'd been going through. I soon sank into a deep, much needed sleep. 

4:00 am

I remember pressure - lots of pressure in my "nether regions". I announced this, and the nurse came in to check my dilation. I was at an eight! My whole body was shaking uncontrollably, and my teeth were chattering. I was told this was adrenaline; my body was gearing up to push out a human being, which takes a lot of work. This shaking didn't stop until after Roman was born.

Some time later I felt more pressure. They checked me again. A nine! Labor was speeding up! I'm convinced that this was because of the epidural. Since I was having so much trouble relaxing before, the epidural helped me to more quickly achieve the relaxation I needed to advance into the last stages of labor. That hour and a half of sleep I was able to have was a godsend. It gave me the energy I needed to complete this journey. I was nearly done.

It was around this time that a nurse asked me permission to do something to my baby that I was appalled by. You see, ever since my surges began, two things were happening with Roman: 

His heart rate would go down significantly with each surge, depending on what position I was sitting in.

Every time I moved even a little bit, the external monitor on my lower belly that measured his heart rate would get moved just enough to make it so it could no longer detect his heart rate, and it always took the nurses several minutes to find the right location on my belly to pick up the heart rate again. 

It was because of this that the nurse came right out and asked if it would be ok with me if they were to do internal monitoring of the heart rate. In case you were unaware, internal monitoring of fetal heart rate involves an instrument that looks like this: 

See that spiky wire thing at the top? They wanted to stick that inside Roman's SCALP. Umm, let me think about that--GO TO HELL. I mean, no thank you. What I should have offered was to stick that thing in her scalp to see how she likes it. Why is that even something that is done at all? And why would I agree to shoving that in my baby's scalp?! It just sounds so inhumane! Perhaps the reason why this is acceptable comes from the same line of thinking that a fetus is not an actual person until they are born. 

5:20 am

More pressure. The nurse checked me one last time. I was dilated to a ten. It was Go Time. She stepped out to call Dr. Berry and let him know that it was time for him to come to the hospital.

5:40 am

In spite of the fact that the doctor had not yet arrived, the nurse told me that I needed to start pushing. I hadn't wanted to birth Roman lying down OR do any kind of "purple pushing" (where they have you take a deep breath and then push as hard as you can while they count to ten), but I was told that by opting into an epidural, I had opted into this as well, and I couldn't opt out. Damn.

I took a breath. I pushed as the nurse counted to ten. It was within the first three pushes that someone announced, "He has dark hair!" 

"WHAT? You can see his head?" I demanded to see a mirror immediately. I saw the top of his head. It was all wrinkly. I thought, "oh no. His head is all wrinkly. Something is wrong." I must have voiced something like this aloud because I was assured by Alie and my nurse that all newborn babies' heads are wrinkly when they very first come out. Phew. I hadn't known that.

They told me to stop pushing until the doctor arrived. Apparently my pushes were more effective than the nurse thought they would be. 

Dr. Berry soon arrived and we began the "deep breath, PUSH 1-2-3-4-5-6-7-8-9-10, release" routine again. Every time I finished pushing, I lost consciousness for a brief moment until it was time to push again. No one seemed to notice. That was frustrating. I wanted to ask them all to just give me a break, but we were so close at this point I just gritted my teeth and kept on going.

This was taken just moments before Roman came into this world

Along with Dr. Berry came the NICU team. "Just in case," they said. The room was very crowded as I completed my final minutes of labor. Three NICU team members. Two nurses. My doula, my husband, and my doctor. Eight people! So much for this being a private affair. 

Left to right: Doula Alie, Dr. Berry, Nurse Janae

5:50 am

Three 10-counts of pushes equaled one set of pushes. I had Roman out in 5 sets of pushes! As soon as he was out, they set him on my stomach. I couldn't believe it. He was here. I'd done it. He was real! He was alive! And he was so beautiful! 

Touching my baby for the very first time

Josh reminded the doctor about our wish to delay cord clamping (thank you, Josh!). The cord went flat after only about 30 seconds. Dr. Berry handed Josh the scissors so he could cut the cord. I noticed this and remembered how Josh had told me he didn't want to do any of that stuff. "That's what we're paying the doctor for," he'd told me. So, trying to have his back (like he had mine a minute ago with the delayed cord clamping), I piped up. "Oh, Josh doesn't want to cut the cord," but Josh shook his head and took the scissors. He didn't want to appear squeamish in front of all those people. He "succumbed to peer pressure," he told me later. 

Cutting the cord

As soon as the cord was cut, they handed my baby off to the NICU team for examination in the corner of the room. Josh went over with Roman to make sure they didn't do anything to him that we opted out of in our birth plan. They followed it to the letter.

It seemed as if they wanted something to be wrong with him. The head NICU guy kept trying to come up with reasons that they were going to need to take him away, but there was just no reason to. Baby Roman was perfect. He was healthy. Eventually they determined that Roman could stay. 

They gave him back to me and we did skin-to-skin, and tried nursing right away. Then Josh took him and did skin-to-skin with him as well. It was so sweet to watch them bond like that.

Skin-to-skin with Daddy

First picture of the three of us

Dr. Berry and Roman

It wasn't until a while later in that room that I found out that Roman does have craniosynostosis (a condition where the bones in the skull have fused prematurely). This just means he will have to have an MRI to find out how extensively the bones have fused. A mild case of this could mean that he would just have to wear a helmet for a while to re-shape his head. A more severe case would mean that he would have to have surgery involving breaking his skull to re-shape it.

I am overjoyed at how well everything went. Everyone at the hospital that we came into contact with during labor and delivery was supportive of my birth plan. I was able to have a vaginal delivery like I wanted, in spite of the fact that Roman has a fused skull (doctors had been telling me for weeks that if he does have craniosynostosis, a vaginal delivery will not be possible). Roman got to stay with us the whole time; he never needed to go to the NICU. And we were sent home after just 48 hours! It was like a dream come true. I never expected it to turn out so well, because I'd been told to expect the worst. My prayers were definitely heard and answered. And now I get to be the Momma of this sweet, wonderful boy. I feel incredibly blessed.

A Letter to My Unborn Son

Dear Roman,

You are scheduled to arrive in 18 days. I've been preparing my whole life to meet you - especially in the last few months. I want to meet you. I want to hold you in my arms. I want to take you home and love you and feed you from my breast and take care of you.

But I'm so scared.

I'm scared of what lies ahead. I'm scared of the unknown. I'm scared because I don't know what to expect when I see you. The doctors are saying your head is "too small" and that it "might be deformed or misshapen in some way" and also that "there could be possible mental issues as a result". They're saying you're likely going to live in the NICU for the first days or weeks of your life, rather than in the arms of your Mom and Dad, who want to hold and kiss you so badly.

The doctors don't talk about you like they would talk about a normal baby. I used to be able to picture you in my womb - a perfect, healthy, living being. But I can't picture you anymore. I can't even see you in my dreams. I can't even begin to guess what you look like. Because, according to the doctors, you're no longer just a mixture of the genes that your Dad and I have given you. You're a mixture of our genes with a possible chromosomal condition that may affect the way you look. That doesn't mean we love you any less. It only means that I can't picture your sweet, innocent face.

I'm even more scared about something else happening on your Birth Day, Roman. Your brother Raven, whose spirit left his body a few months ago, is going to come out, just like you will. But he isn't going to be in my arms, and he isn't going to the NICU to get better, either. He will be taken away from us, his body to be turned into ash, and given back to us in a tiny urn. And though I will be filled with happiness that you have been born, I will also experience the greatest sadness at the same time for our little Raven. But Roman, I need you to know that however strong that sadness may be, it does not diminish my joy at your arrival.

Please keep growing, Roman. Keep kicking and pushing on my belly. Because even when it hurts me, its nice to know you're still there. We need you to keep on fighting, like you've been doing. Prove to the doctors that they don't know everything. They can't predict the future. For all we know, you are the healthiest baby ever to have existed. This is what I will try to picture in my mind when I think of you.

I love you already. Get here soon.

Love,

Mom

Why Can't Things Ever Be Easy?

Before I begin, I must warn you that this post is a rant. It will most likely not uplift or inspire you, so if you would like to turn back now, I give you full permission to do so before you read any further. 

I feel like there must be someone up in heaven that has gotten with God and said "Let's make everything difficult for Jessica. Things that most people take for granted--let's make sure those things are especially challenging for her." Because nothing has ever been easy for me or come naturally. I know there are people that have it much worse than I do, so I shouldn't be complaining. But seriously. Can't a girl ever catch a break?

Things started off great - I had a mom and a dad who loved each other, and two brothers. My mom was a fantastic mom. Circumstances made it possible for her to be a stay-at-home mom, for which I am eternally grateful. But in 1996, she got sick. On Labor Day in 1998, after a long battle with Cancer, she breathed her last breath and we had no choice but to try and move on with our lives.

My cute mom, sometime in her mid-twenties.

Somehow, life did go on, and I finished high school in 2005. I began college shortly thereafter. My dream was to get married and become a mother - and give my children what was stolen from me at such a young age. The years went by and I watched one by one as my friends all got married and began having kids. I hated when they would say that their plan had been to stay single for as long as possible and not have kids until their 30's. It didn't seem fair - I was the one who wanted this so badly. Why them and not me?

I decided to stop waiting around for my life to begin. I began a career. I saved as much money as I could and bought a house. I met Josh and we began to date, as many of my friends were pregnant with their second child. Once we had been seriously dating for a few months, I made it clear to Josh that I wanted kids as soon as possible, and he was on board. We got married and began trying for a baby.

I have always felt deep down that something was wrong with me, that I wouldn't be able to get pregnant naturally. So I went to see a doctor. We scheduled a laparoscopy, where they go in with a probe through your naval and look to see if you have endometriosis. I woke up from the surgery with three scars. One in my naval, and one on each side of my abdomen just above my hips. During the surgery they discovered that I did not have endometriosis, but instead I have blocked fallopian tubes, and that I probably would not be able to get pregnant naturally.

I was devastated, but determined. We immediately made an appointment with a fertility specialist. In that appointment, it was decided that we would proceed with In Vitro Fertilization (IVF) and that I would start the process right away. So I did. The injections were the worst part. Not only were they painful, but I swear they made me gain weight and caused me to be extremely moody. The implantation was the best part. Ever heard of Valium? Makes you feel like a million bucks. After the doctor finished the implantation, I was to lie still for 20 minutes. I began to cry as soon as the doctor left the room. When the nurse walked in a minute later and saw me crying, she was alarmed. "What's wrong?" she asked in a panicked voice. I replied, "I'm just so happy this is happening!" She probably laughed at me at that point. I don't remember.

They implanted two embryos into my uterus. On December 27th, I went in for a blood test to find out if I was pregnant. When the nurse called that evening, I was ecstatic to hear the results were positive. Two weeks later, we went in for our first ultrasound. Two very distinct bodies were visible. I was pregnant with twins. Each of them already had a heartbeat, in spite of the fact that weeks earlier they were mere cells. That was incredible to me.

I remember thinking, "Wow. Things are really looking up for me. Things are starting to go well. I wanted nothing more than to be a mother, and now I'm blessed with two beautiful babies at once! My luck is finally changing!"

Our fertility doctor recommended that I go see the doctors in the Maternal-Fetal Medicine department of the Utah Valley Regional Medical Center. We began to have ultrasounds every two to four weeks. Every time we went there, we were met with more and more bad news. Our smaller baby (Raven) was doing worse and worse every time we went. He wasn't growing. He was missing part of one of his legs. He didn't appear to have kidneys. He had too little amniotic fluid.

On May 7th, we went in for our regular appointment at the hospital. On May 7th, our hearts were shattered into a million pieces when we were told that Raven's heart had stopped.

An image I created in memory of Baby Raven.

After the news settled a few days later, I remember thinking, "Oh yeah. This is how my life goes. I never should have believed that things could have happened any differently."

My only consolation was that we still had one remaining healthy baby. Baby Roman was perfect. He never had anything wrong with him before--until yesterday's news came crashing down on us.

Our perfect, healthy, kicking, rolling, hiccuping baby boy is not doing as well as we all thought. They don't give me ultrasound pictures anymore, so I can't show you specifically what Roman's head looks like. But here is an ultrasound picture, courtesy of Google images, that should give you an idea.

His head is measuring at 27 weeks, although he is 32 weeks gestation. He has Microcephaly (small head) and Craniosynostosis. Craniosynostosis is a condition where the plates of the skull begin fusing together before they are supposed to.

This means I may not get the natural childbirth I so desperately wanted to have. It also means that Roman may have to undergo a surgery wherein they break his skull and reshape his head.

I am terrified of what lies ahead for me. I have been so traumatized by this pregnancy that I'm not sure I ever want to put myself through this again. I guess when I said I wanted to be a mother, I meant that I wanted what all of my friends had: uneventful, healthy pregnancies, and happy, healthy babies. I never dreamed that any of this would happen to me. I don't want to do this anymore. I'm tired of the constant fear, the incessant heartache, the overwhelming sadness that is always on the verge of completely engulfing me.

I wish I could end this post on a positive note, but I don't have it in me right now. Anything positive that I could say would feel like bullsh*t to me. I know I'm being put through these trials for a reason. I know that I will be a better person for it in the end. But in the meantime, it's just so damn hard.

Make it Bright

A song I wrote and recorded with my amazingly talented brother, Alex Bateman.

Heartbeats

The rain poured down on the window outside the Perinatal unit of the hospital as Josh and I waited for the nurse to call my name. I felt calm. The last ultrasound gave us good news, so I had no reason to believe this one would be any different. The nurse called my name and led us to the ultrasound room. I pulled my shirt up to expose my belly and laid down slowly on the paper-covered surface next to the ultrasound technician.

She started with Roman, our bigger baby. Normal growth, normal heartbeat, normal amniotic fluid. Roman was doing fantastic - as usual.

Next she measured Raven, our littler baby. He was measuring more than three weeks behind in growth. I watched as she changed to the setting where you should be able to see blood flow in the umbilical cord, as indicated by bright red and blue spots on the screen. I didn't want to register the fact that there was almost no red and no blue this time.

"Is your doctor Dr. Gainer?" she said, standing up.

I told her that it was. But there was something she wasn't telling us.

"Did you look at the heartbeat?" I asked, hoping she'd just forgotten.

She gave me a look I'll never forget. A look that has forever been etched into my memory. A look of pity--or was it sympathy? A look that told me my answer, before she uttered another word.

"There was no heartbeat. I'm so sorry."

I remember turning back to the screen, and for one moment I didn't react. For one moment I thought I could handle the news calmly and rationally. For one moment, everything went blank.

And then the moment was over, and I felt a sob escape from my lungs. The tears came and didn't stop. The technician left the room and Josh just stood there, holding me. The rest of the visit was a blur. The doctor came in, looked at Raven's heart on the ultrasound, and confirmed the technician's news. She told us that both babies would stay in there until Roman is ready to come out. She told us about the free cremation services that the hospital offers, and how the little urn would be about the size of a golf ball. She told us about the fact that there is a 15% chance that Raven's death caused some brain damage in Roman. She went on and on and after a while I just stopped listening. All I could think of was "there used to be a heartbeat, and now it isn't there." I kept repeating this in my mind over and over, unable to accept the truth of what had happened.

So now we have one baby.  And now, somehow, we have to deal with this invisible loss - a loss that no one can see because no one else has ever met this baby. No one else has ever heard or seen the steady beating of his fighting heart. No one else has felt him move, or sensed his presence. Or imagined what he'd look like, what his personality would be like, or how his life would be.

It's during times like these that I always turn to a particular scripture - one that gives me comfort when trials come upon me.

"And if thou shouldst be cast into the pit, or into the hands of murderers, and the sentence of death passed upon thee; if thou be cast into the deep; if the billowing surge conspire against thee; if fierce winds become thine enemy; if the heavens gather blackness, and all the elements combine to hedge up the way; and above all, if the very jaws of hell shall gape open the mouth wide after thee, know thou, my son, that all these things shall give thee experience, and shall be for thy good." - D&C 122:7

Now I wonder if I'll ever be able to listen to this song again and maintain my composure:

A Word from Daddy J

We had another ultrasound this week.  Finally some positive developments. First off, we received our genetic test results, which were very encouraging:

The chances of the babies having Downs Syndrome: 1 in 4,100

The chances of the babies having Trisomy 18: 1 in 10,000

The chances of the babies having open neural tube defects: 1 in 9,300

Aside from that, we have made the family decision to solely focus on the positive with bringing these two new lives into our family.  Thank you all so much for your prayers and thoughts.  We know that our Heavenly Father has been listening.  This week we saw indications of kidneys in Little.  The actual kidneys themselves are difficult to see, even in Big, but the signs of kidney function are showing up in Little.  Stomach, bladder, and increased amniotic fluid are all present and accounted for.  In his first twenty weeks or so of gestation, Little produced 1 cm of fluid.  In the last two weeks he has produced just over 1 more cm--Huge improvement.  Also, for the first time Little stretched a leg while we were around to watch.  Femur, Tibia, Fibula, and foot were all visible on his right leg.  He chose to keep the other one tucked up against his chest so no picture, but up until now he had kept both tucked away.

There it is--Little's right leg, all stretched out!

  We are very happy about bringing these two guys into our family.  They might struggle some with unknown challenges but they are blessings, and we are grateful.  Even if all these babies do is let us know how loved we are by all of you, which we are confident will not be the extent of their journeys, they have fulfilled a mission in allowing us to see the good will and love of those by whom we are surrounded.  Thank you again for all the hopes and prayers on our behalf, we ask that you please continue them.  We love you all and will continue to keep you up to date with all of the good things the boys are bringing to our lives. 

Much Love ;)

Twin Update: Some Difficult News

First I need to start out by saying this: I don't need anyone's sympathy. I don't want you to say "I'm sorry" or "I can't imagine what it would be like". I don't want any phone calls or hugs or sympathetic looks. I just need everyone's prayers. I need the whole world to pray as hard as they can for my little ones that are growing within me.

"Faith is things which are hoped for and not seen; wherefore, dispute not because ye see not, for ye receive no witness until after the trial of your faith." - Ether 12:6

Today, we had another ultrasound. I've learned from past experience not to get excited for these ultrasounds anymore. Sure, I get to see my babies. I can watch them move and see all their little arms and little legs. But with every ultrasound has come bad news. And as time goes on, the news has just gotten worse. I now dread Ultrasound Days.

Let me start off by saying that our bigger baby boy is growing perfectly. He is and has always been right on schedule with his growth.

Our littler baby however, is a different story.

I'm currently 19 weeks gestation. Three weeks ago, Little was two weeks behind in growth. That in and of itself caused concern with the doctors at the Perinatal Unit of UVRMC. Today, he is a whopping three weeks behind. He has only one cm of amniotic fluid, whereas Big has a normal 6 cm of fluid. The doctors are fairly certain he has clubbed feet, which I wish I could say that was the worst of our concerns.

We keep hearing the same thing about our Little. "We don't know what's wrong, but we know there is definitely something wrong." We're told that there are four possibilities are being considered:

Down's Syndrome: A chromosomal defect where the baby has 3 #21 chromosomes instead of the normal 2. This is a condition that most people know about - we've all met someone at one time or another with Down's Syndrome, so I won't go into detail.

Cystic Fibrosis: This is a gene disorder caused when one or both parents are carriers of the cystic fibrosis gene. Being a carrier doesn't mean you necessarily have it, but it does mean you can pass it down to your children. Cystic fibrosis affects your lungs and can affect your body's ability to digest food. Those living with this condition are prone to frequent lung infections.

Trisomy 18: A chromosomal defect where the baby has 3 #18 chromosomes instead of the normal 2. Babies with this are often stillborn. If they do survive past birth, they typically don't live past their first birthday.

Potter's Syndrome: This is a condition in which the baby's kidneys are missing. The specialists at the Perinatal unit have never been able, using the sonogram, to see kidneys on Little. If he doesn't have kidneys, that could be the cause for the slow growth thus far and low amniotic fluid. Kidneys are essential to viability. If he doesn't have kidneys, he can live no more than 24 hours outside the womb. "What about a kidney transplant?" we asked. The answer: Not possible on a newborn.

I am not sure what to think or feel. I am not sure if I should set up both cribs or just one. I'm not sure if I should keep buying matching sets of baby clothes or start buying for just one baby. I don't know if we should get a minivan or keep the car that we have, since one baby would fit in our current car, whereas two would not. I have to begin the process of mentally preparing myself for the worst case scenario. But I can't. I just can't allow myself to think like that. I also can't allow myself to put effort or energy into preparing for two babies if I'm only going to take home just one. For now all I can do is pray harder than I've ever prayed before.

Our next step is genetic testing. We will know more once those tests have been completed and the results come back. Just as everything has been with this pregnancy, we'll just have to wait and see. And although these kinds of posts can be incredibly emotionally draining to write, I will try to keep everyone updated.

The Moment I've Been Waiting For

My name is Jessica. I am a Wife to a doting husband. I am a Stepmom to an adorable six year old boy. And I am (finally!) a Momma, to two beautiful babies growing within me--something I've always wanted.

This is our blog.

A thought occurred to me recently. I have never felt so full of worth, so full of purpose, as I do now. To clarify, pregnancy hasn't changed my worth or value. But the value I put on myself seems to have magnified a thousand times over. I feel I have to take much better care of myself, because taking care of myself means taking care of my babies. Sure, pregnancy is hard. It can be uncomfortable, painful, and even miserable at times. But I wouldn't trade it for anything. My whole life has led up to this. My whole life, I have wanted this. And now, in spite of it all--the challenges, the hardships, the fertility issues--everything, it is finally happening. I am a Momma. While yes, there has been some slight nausea, a bit of back pain, minor sleep loss, and the teensiest bit of weight gain, I feel so whole. There is life growing within me. TWO lives. I just hope that I can be worthy of this incredible blessing that I've been given.

My little Beans at 12 weeks. Aww, they're spooning.

I'm not going to lie. I've suffered some serious depression in my past. And I would be lying if I told you that I had never considered taking my own life during some of those more difficult times. During my lowest moments, I felt as though my life were meaningless, that it had no value. That if I died, nothing would be affected. That nothing would change. 

But I have everything to live for, especially now. My purpose in life as a Momma is one of the most important purposes of all. Having wanted this long before I was even old enough to be a Momma, then having to wait what seemed like an eternity, I often felt as if it would never happen. That I was destined to walk the earth alone and childless, with no real direction or sense of self worth. Years and years went by. I was the very last of my friends to marry. What was wrong with me, I thought, that no one wanted me? But my problem wasn't that no one wanted me. The right one had not yet come along. I have always had a problem being patient with the Lord's Timetable. 

It may not be marriage or Motherhood--maybe it is a career or something else. If what you want more than anything hasn't arrived, despite your best efforts: keep going. Just keep going. Know that not everything happens on your own timetable. Sometimes God has other plans for us. This is a lesson I am still learning. Its hard when you're a control freak and you feel like you should be able to control every aspect of your life. You can't. Just let go.