Pregnancy --> Birth: Dylan Roger

This is LONG overdue. 

I've been wanting to do this for a long time. I've regretted not doing this when we found out about our sweet boy. But I'm going to try my best to wrap everything up from beginning until now for you in several blogs posts.

It won't be enough, but I pray it will bring some understanding. I pray if you are close to me - you understand why I say "no" to things, why I am quieter, why I sometimes just can't be myself.

So here goes... 

I literally remember it like it was yesterday even though it was about 7 months ago now. I went into my OB office for my 20 week ultrasound on July 13, 2023. My husband couldn't get off work, so I told him not to worry, I would get the gender in an envelope and bring it home so we could open it together. During the ultrasound, I didn't really think much of it at the time, but when I look back, I do now realize how quiet the tech was.

The following day was a Friday, I was on the phone with my boss when a private phone number came through on my cell phone. I figured if it was important they would leave a voice mail.

Well... that phone call WAS important.

I immediately looked at my phone and saw that there was a voice mail waiting for me, and I started reading the transcription that was there. From what I could make out... this was NOT a good call.

I told my boss I needed to hang up with her, and I was already in tears. The voice mail said something along the lines of "Hi Emily, this your Dr. calling regarding your ultrasound from yesterday. I wanted to reach out to you regarding it, and let you know I do have concerns. I really want you to be sitting down and in a good place when we are able to get in touch with you."

After I heard that - I just kind of blanked out. It took 3 1/2 hours for me to hear back from the office as to what their concerns were.

I remember it vividly. I went to a friends' house swimming. I needed to do something to get this off my mind while I was waiting for the phone call. But let's face it... THIS was not going to be off my mind. The whole time I was there I was doing anything and everything to hold back the tears.

I let all my friends know that I was expecting this call.

And then finally, it came.

I got the phone call and the first thing I heard were that they noticed markers for Down Syndrome, but I thought I also heard them say Trisomy 18. They were sending an urgent referral to the Maternal Fetal Medicine (MFM) specialists in Grand Rapids. From what I knew, they were the best of the best.

I got into the MFM office the following Friday, July 21, 2023. My appointment was approximately 4 hours long. We met with genetics, had an ultrasound, an amniocentesis, and met with an amazing doctor. I remember her asking what was going through our minds, and I just spilled out, "I just hope it's not worse than Down's!" And please don't think I wouldn't have loved on my child if they had Down's, I just knew at this point, there was the possibility of it being fatal.

That doctor started drawing out everything she noticed on the ultrasound. Huge hole in his heart, limb deformities, 90 degree fracture in his left arm, bowed femurs, clubbed hands and feet, small cerebellum... it was almost as if there was more WRONG than right.

How can you do anything but ball your eyes out after that? You're basically being told your child probably won't make it. And then we were being asked the question that nobody wants to be asked... "You have options... Do you want to terminate your pregnancy?"

This is a question that I thought I would have the most definite answer to. I hate to say that I didn't have to waiver in my decision making with this, but it's part of my story. I thought it would be the easiest decision to say "no" to termination. I was so wrong. When you see how much your child has wrong, you question a lot. I hate that I even thought about it now, but this was such a horrible and scary part of our journey.

My husband, Jon and I got home, and we talked about this for a long time. There were several factors that brought us to our final decision of NOT terminating my pregnancy, but I think the main factor through all of this was God. My faith through it all. God led my husband and I through this whole journey.

When we notified MFM that we were not going to terminate, and we were going to move forward with the pregnancy, I continued to have more appointments. I went in about every 4 weeks to start. Every appointment was pretty much the same. No new findings.

Eventually, Jon and I had a conversation about our unborn son. I let him know that I needed to give him a name. If he was to be born still, I needed to assign him a name, so he isn't just known as Baby Boy. Jon agreed, and I told him I had a name in the back of my mind that I loved. I told him I loved Dylan as the first name, and I really have been wanting to use the name Roger as the middle name in memory of one of my grandpas that passed away. He was no longer Baby Boy, but now Dylan Roger.

My appointments became different now because the doctors knew this pregnancy could end any day or that our child could be born still or could pass shortly after he is born. They also were asking if he had a name now too. And now they were not just calling him a baby boy, but they called him Dylan. To hear others call him by a name that means so much to you when you're going through this journey was beautiful and heartbreaking all at the same time because I never knew if I would get to call Dylan by his name. 

By the time September rolled around. Jon and I had to meet with the palliative care team and a neonatologist to discuss our plan of care for our son after he was born. The palliative care appointment went much better than I thought. I expected it to be super emotional, but they just simply asked us what we wanted. Our choice based on all the findings was comfort care for Dylan - this meant NO interventions once I delivered. When we met with the neonatologist, we entered the appointment with the doctor on the phone with a geneticist discussing Dylan's findings from the amniocentesis.

Up until this point, I had only been counseled on the fact that Dylan had full Trisomy 18. A lot of what the neonatologist said during the appointment was a blur, but I remember going back and looking at my patient portal to read her findings. That's when I saw a note from a geneticist in my chart. I opened it up and the last part of the note stated, "While Emily's baby has features of Trisomy 18, this is not an accurate diagnosis at this time."

My brain went in a million different directions. First of all, WTF!? I'm sorry, but seriously!! Secondly, so is Dylan okay? Is he going to live? What does this mean? Does he have another fatal condition? Will we really have a completed family now? I've always dreamed of 2 kids, maybe this is really it!?

I got on the phone with the MFM office and spoke with a nurse named Heidi. She was the most amazing nurse throughout this journey. She immediately got one of the doctors to start looking into this note. Eventually, the doctor called me back, and all I can say is that I don't think I'll ever quite understand all of what she was telling me, but I do remember that what she told me gave me the biggest glimmer of hope that Dylan would be okay.

I remember sharing the news with my loved ones of how excited I was that we might actually get to love on this child for longer than we expected to.

But... time went on. I had more appointments about every 2 weeks, then moving on to every week. I remember when my hope faded that Dylan would be okay. I ended up in OB triage in October. The doctor that we met with at our very first consult was there, and she came in and gave me the biggest hug. I told her that I had this hope that Dylan was going to be okay. But then I saw sadness spread across her face. She let me and Jon know that she still thought Dylan's condition was very serious and was indeed life threatening, but she advised me to get a chromosomal microarray (CMA) test done to look more closely at the amniocentesis results.