The Blog Post I Never Wanted to Write…
This is the blog post I never wanted to write. So I didn’t. For over four months, I didn’t write a word of my story.
Or any other story for that matter because I couldn’t go on giving you tips on where and how to travel with kids when I hadn’t addressed the tragedy in my life.
“Writing this story somehow makes it real…”
Writing this story somehow makes it real, even though I know all too well that everything that has happened is indeed real.
But how do you write about the loss of an unborn child that you lost nearly halfway through your pregnancy?
I guess I’m about to find out. Here goes nothing…
The Beginning of Our Journey
In my last post all those months ago, I kind of put it out there that we were on a very scary journey in our pregnancy, as we had just found out that it was possible that our unborn daughter may have Down Syndrome. And in my own naivety, I somehow thought that that would be the scariest part of our journey.
Boy, was I wrong.
A few days after I received a phone call – on a Saturday, mind you – from my OB/GYN that my NIPT test had come back abnormal with a high risk for Down Syndrome, I walked into the offices of the maternal fetal medicine clinic at almost 12 weeks pregnant. They are the doctors you see when you are in a high risk pregnancy, and I promise you that it’s not a doctor’s appointment any pregnant woman wants to have, especially when she has to attend the appointment alone due to the COVID restrictions.
I took a seat to fill out the paperwork and could barely write my own name. My hands were shaking THAT hard.
I Was Petrified, But It Was About to Get Worse
As much as my doctor had tried to prepare me for what to expect, I was petrified. Basically, they were going to do an in-depth ultrasound to check the nuchal fold thickness and to see if they could see a nasal bone. She said that they may offer me a CVS (chorionic villus sampling) test, but I did not have to choose that if I didn’t want to.
A CVS test is an invasive test that can check for chromosomal abnormalities and is typically offered before amniocentesis is an option. If done right, it’s fairly accurate but not as much so as the amniocentesis. My doctor even had a patient who got a false positive from a CVS test in the past, although it was for a different condition. My thinking was that if they saw some sort of signs of Down Syndrome, I would wait for the amniocentesis rather than go through both of the tests.
I finally got into the exam room, got into one of those ever-so-fabulous gowns and laid down for the ultrasound. They wanted me to dress in the gown in case I changed my mind about the CVS test. I obliged.
The ultrasound technician floated the probe across my already growing belly and took the usual photos. Our little girl looked absolutely adorable to me and wiggled like the little dancer she always appeared to be in previous ultrasounds, but I could tell there was some concern in the eyes of the technician. She tried to remain her chipper and cheerful self, but I have an intuition about these kinds of things that is typically spot on.
A few minutes after she had finished taking all of the images and measurements that she needed, the doctor walked into the exam room.
Something Was Off – I Could Just Feel It
The doctor was as kind as the ultrasound tech and had a great bedside manner, but something was off – I could just feel it. I knew in that moment, that they did see signs indicative of Down Syndrome, but I was not prepared for what else they had found.
“We are seeing several cystic hygromas, which is very concerning to us,” she said. I had no idea what a cystic hygroma was. I was, however, about to learn about a whole slew of medical terminology in the coming months that no mother should ever have to know.
I honestly don’t remember the exact medical explanation for it, but essentially these types of cysts occur in the lymph node system, typically indicating the failure of a major organ or organs. She explained that this is common in babies with Down Syndrome, but that they were seeing an extreme case of this in my daughter.
I let the doctor know that I still wanted to wait to have the more definitive amniocentesis versus the CVS, but she highly suggested we proceed with the CVS test because she didn’t believe, based on the images seen in the ultrasound, that my baby would survive long enough for me to have an amniocentesis and she wanted me to at least have answers.
Her words stole the breath from my lungs in a way that I had never felt before.
My World Came Crashing Down
My entire world felt crushed into a million pieces in that very moment.
I hardly remember agreeing to the test, but I did know that I wanted to have answers. I still couldn’t possibly believe that she could pass away, but I did want to know so that I could start preparing for any resources that she could possibly need throughout her childhood and beyond – education, physical therapy, medications. Whatever she needed I was prepared to make sure that she had no matter what.
The test was uncomfortable at best. Imagine having the largest possible speculum stuck up THERE and then having a super long skinny drink straw shoved into your highest up lady parts repeatedly. And I got to watch the whole thing on the ultrasound screen, since that’s how they navigate the terrain. So. Much. Fun.
I am just so thankful that the medical team was so incredibly kind that day.
Sharing the Awful News
As I got dressed and prepared to walk to the car where my husband and son were waiting, I had no idea how I was going to tell him that our daughter had a miniscule chance of survival, and I am not sure I conveyed that very well through the sobbing that finally broke through the surface the second I sat down in the car.
The next few days were a blur. I waited impatiently for the CVS test results, praying for a miracle.
It turned out that the test was inconclusive and I’d have to do it all over again. With the way my luck was going, this truly didn’t shock me at all.
Here We Go Again…
So back I trudged to the maternal fetal medicine office for Round 2, which was ten times more painful than Round 1. And yes, I am purposely comparing this to a boxing match. They had a hard time getting the sample because apparently my uterus kept contracting. I suppose my uterus wasn’t thrilled about having to go back and be traumatized again either.
But there was a bit of hope in that appointment. Because I had to have another ultrasound in order to do the test, the doctor had another chance to see how our daughter was doing. It appeared as though the cystic hygromas had shrunk down significantly and my daughter’s chances of survival went from 10% to 50%. My own doctor would later tell me that she’d never seen that happen before.
I asked the doctor that if my daughter, who we named Ryan Ann, did pass away, what would happen. Would I start bleeding? How would she come out? It all seemed so overwhelming.
The doctor told me that they would likely do a repeat ultrasound one day and see that she no longer had a heartbeat. Depending on how far along I was, they would either do a D&C or I would have to deliver her.
I prayed to God in that moment that if He could not save my daughter to at least allow me to give her a proper birth rather than be ripped into pieces by a D&C. It was one of the toughest thoughts I’ve ever had to have.
Things Were Looking Up (For a Moment)
On my birthday, we received the news that our daughter did indeed have Down Syndrome and that we would continue with weekly heartbeat checks at my regular OB/GYN’s office to monitor her. At 20 weeks, we would do an in-depth anatomy scan to check for any of the major worries in a Down Syndrome pregnancy – the heart and the stomach are two big ones.
The Down Syndrome diagnosis didn’t scare me anymore. I was 100% prepared to make sure that she had great doctors and therapists and a beautiful support system around her to help her thrive. I just wanted her HERE.
Week after week, our beautiful Ryan Ann continued to have a strong heartbeat in the 150’s. Although I was still early on in the second trimester, I was already feeling her little kicks
and wiggles. I nicknamed her
“tiny dancer” because she t
ruly was a little worm in my tummy – just like her big brother.
I even got the clearance to do a little trip to St. Augustine for my blog. I felt as though my miracle was truly happening. My Ryan was going to make it!
And Then That Moment Ended
But right around 17 weeks, I started to feel my tiny dancer wiggle with just a little less vigor. I tried to dismiss it, but I had a horrible nagging feeling in my mommy gut as I went in for my weekly heartbeat check.
My doctor couldn’t find her heartbeat with the doppler, so she grabbed a portable ultrasound machine just to take a look to see where she was and what was going on. She wasn’t too concerned at first because she was able to locate Ryan and it appeared as though she was just hanging out a little lower than normal and still had a heartbeat (although it had dropped to the 130’s – “still in the normal range,” she assured me). However, my doctor did notice a SIGNIFICANT amount of swelling around the baby. She had me go for a more in-depth ultrasound two days later.
If you’ve ever had a bad ultrasound of any kind (pregnancy or otherwise), you know that feeling of gloom when the technician leaves the room for an extended period of time. That was exactly what happened the day I went for my more in-depth scan. The technician brought the radiology doctor into the exam room to tell me that although Ryan still had a heartbeat, that she was swollen to the point where there was pretty much no chance she would survive more than another week – maybe two at best.
Through all of the ups and downs of my pregnancy with Ryan, I had kept my reactions in the exam rooms to a few tears at most, but in that moment, I couldn’t help but sob uncontrollably right there in front of the doctor and ultrasound technician, who had tears in her own eyes when she walked me to the door.
My little feisty fighter. She had fought so hard. She initially wasn’t expected to make it past 13 or 14 weeks and yet she had made it to 18 weeks at this point. I just couldn’t understand why it wasn’t enough.
The Final Ultrasound
I had another scan scheduled for 4 days later at my regular doctor’s office again to keep an eye on my little girl.
In the meantime, it was Halloween weekend and I did my very best to make sure that Jameson had an amazing time. We went out the night before Halloween and got matching Toy Story costumes (he was Buzz and I was Jessie) and we even had a Mommy/Son date night at a steakhouse that night. On Halloween, we had the most fun getting dressed and trick-or-treating. If this was going to be my last weekend with my little boy AND my little girl, I was going to make sure it was an amazing one.
Tuesday arrived and our ultrasound was scheduled for 9am. It was also election day. Yes, that election day.
My doctor’s office made an exception to their rules that day and allowed me to bring my husband and son into the ultrasound room. I couldn’t possibly imagine facing bad news alone, so I was beyond thankful that they permitted them to be with me.
“I’m sorry, but I am not seeing a heartbeat today,” the ultrasound technician said as she placed her hand on mine. I nodded my head as the tears streamed down my face. My other hand squeezed my husband’s hand as hard as possible.
Planning To Meet Our Girl
We were sent to an exam room right away to wait for my doctor to come in and speak with us. So many of the details are a blur to me, but I do remember that we decided inducing me the next morning to give birth to our little Ryan Ann was the best option considering the situation.
When we left, I called my parents and my mom immediately bought a plane ticket to be in town the next morning so she could look after Jameson while I was in the hospital and be here for me while I was grieving.
Once we were home, I kept my mind busy by preparing a bag for the next day and preparing the spare room for my mom. I also lost myself in a Netflix series to try to numb my brain. It worked to a point.
I had to be at the hospital at 5am the next morning, which meant that I would be alone until my mom arrived and could take over watching Jameson. Her flight arrived fairly early though so I was confident that nothing would happen until my husband was able to make it to the hospital.
No one could be certain how long it would take for Ryan to arrive, but just a little while after my husband got to the hospital, our sweet girl was born sleeping.
Honoring Our Daughter
One day soon I will tell my birth story in detail, but for today I just want to honor her.
Ryan Ann was the sweetest little angel with perfect little fingers and toes. She even had the tiniest little fingernails and toenails. She was indeed incredibly swollen and it broke my heart to see it because it showed me just how hard she fought to survive.
When the time came, I held her for as long as my heart could let me. I was torn between wanting to hold her and not wanting to remember her this way. In my mind, I wanted to envision how she would have looked if she had not been plagued by edema (swelling) and was born at full term.
I will forever wonder what she would have been like. Would she have beautiful brown eyes like her big brother? Would she have her daddy’s smile? What would her favorite Disney movie have been?
I will forever feel robbed of her presence here on Earth, but I know that we have the most beautiful angel looking over us.
Out of all of the things in this world I will never understand, it’s how something so tiny, sweet and innocent can be taken from us just like that. It happens to so many families – far more than you’d think. And with all the evil that exists in this world, why are we robbed of their innocent, beautiful souls?
My sweet Ryan Ann, I will forever long to hold you. I will forever wish I had been able to see your beautiful eyes open. And I will forever miss you, as long as I shall live. Please look over us and know that we will be together again one day. Love, Mommy.