Pregnancy Story Alert!

It’s long, not polished, or complete..

Pregnancy brain has me foggy, but I wrote it anyway!

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I’ve learned throughout my life, especially in the last few years, that things don’t always go as planned! If you’ve read some of my writing in the past you may have caught wind of that… and the fact that somewhere along the line, in a single moment in time, something changed in me. My mindset changed from “why me” to “why not me.” 

The shift has been helpful in letting go of “my” plans and has allowed me to take things in stride more than I ever did before (definitely not something I have mastered, but I can handle “cones in my lane” much better I think!). 

So with that, I want to fill y’all in on this pregnancy journey. I’m the type that gains strength from reading stories of others lives, and so I like to tell them too. 

So, Turner Syndrome… you’ve probably never heard of it. I certainly hadn’t prior to this pregnancy. 

When I found out I was pregnant, I made an appointment right away due to the high risk classification that came about from my prior ectopic pregnancy. At 6 weeks, my doctors started scanning for the baby- they couldn’t find her for 3 weeks. On top of not being able to locate her, my HCG levels never measured as hoped or expected. These two scenarios combined, from week 6-9, raised concerns about a subsequent ectopic pregnancy, and my doctor continuously suggested termination to preserve my single Fallopian tube. Needless to say, I refused each time and explained that I had experienced a rupture before, knew what it felt like, and would promptly make my way to the ER if I experienced any unusual pain. I was scared by the possibility of another rupture, but I knew we simply couldn’t terminate and against the doctor’s wishes and advice I went “3 more days” and agreed that if by Monday there was no baby, then it was time to take action. The pain never came, and baby girl was found at 9 weeks on the Monday scan. Relief. Such relief. 

Around 12 weeks we had the option of a genetics test, which I think is fairly common practice nowadays in pregnancy. For a few reasons, we opted in. My prior ectopic pregnancy caused quite a bit of trauma and the grief of that loss was overwhelming. I wanted to do everything possible to make sure the pregnancy was progressing as it should. That included opting in to this screening. Confident that nothing would come of it, we were also thrilled to find out the gender of our babe a little earlier than on a scan.

But then the doctor called around 16 weeks and said the test came back abnormal, and that we would have to come in to discuss results with them. The feelings were overwhelming and my mind swirled with so many questions about what it could possibly be. We were in the office two days later to receive the news. He told us our baby has a high probability of having Turner Syndrome. In the two days between the call and the appointment, I had frantically learned everything I could about every syndrome tested for on this screening. I knew enough about Turner Syndrome to say to the doc “so your saying we’re having a girl?!” (Turners is present in girls only!) He nodded and proceeded to implore us to not terminate and that if she survived pregnancy, she had a strong chance of a normal life. 

That was never a thought for us. This baby was given to us to love and protect and we planned on doing just that for as long as we are blessed with her. We decided against any tests with even the slightest risks (such as an amniocentesis) because to us, a confirmation of this syndrome, prior to her entering the world, would not change our decision not to terminate. We wanted her to be as safe as possible. So we left that office visit worried about the unknown, with our first specialist visit scheduled in Jacksonville, and continued to learn everything we could about this new-to-us syndrome. 

We excitedly chose her name: Violet Elizabeth Cruz.

In the following days and weeks I read everything I could find about Turner Syndrome. We would be the best parents we could be, regardless of all that this syndrome entailed, that I knew for sure.

I learned that 99% of Turner girls don’t survive to birth. I learned as much as I could about all the complications associated with Turner Syndrome. Heart abnormalities and malformations, intrauterine growth restriction, fluid build up, micrognathia (small chin), infertility, small stature… 

I also learned that many people do choose to terminate with such news. By the time I had learned the harsh statistic (72% or so choose to terminate?!) I had already begun to feel her kicks. It was hard to fathom making a such a decision, and the thought of it was unimaginable.

Our first scan with the specialist was supposed to be the anatomy scan, but she was too small. They moved my due date 3 weeks because she was measuring 3 weeks earlier than originally thought. From what they could tell on this scan though, things looked OK so far. There was no unusual fluid buildup anywhere in her body. They said come back in a few weeks for the full anatomy scan- she would be big enough then. 

From what they could see at 22 weeks on the anatomy scan, things still looked OK. They just weren’t able to get a good read on her heart nor could they see her profile very well. They were suspicious of her chin, saying that it looked a little small but due to her positioning, they simply couldn’t see well enough to say for sure. We would need to come back.

The next scan was scheduled for a fetal heart echo and to hopefully check her little chin. The echo thankfully went very well, which was a major relief! The typical heart issues associated with Turner Syndrome were not present, but they still couldn’t see her chin. We also learned that I was starting to carry excess fluid and that she had dropped from the 45th percentile to 18th percentile for growth within the month between scans. This coupled with my excess amniotic fluid raised some concerns and we were  to come back in 3 weeks. 

We are 29 weeks today, and our follow up scan for fluid and growth check was yesterday. We learned that Violet has dropped to the 13th percentile and that my fluid has also increased. Thankfully, the fluid isn’t due to Gestational Diabetes- I passed that test last week! 

We will be seen again in 3 weeks with the hope that she will not drop below the 10th percentile. If she does, we will have a Doppler scan of her umbilical artery to see if there is an issue with blood flow to and from the placenta. That is going to be a big day- the outcome of that scan could cause a huge shift to what happens regarding giving birth to this little human! 

We are thankful she is still kicking all the time! Her heart rate has been consistently strong with every scan. The physical side of this pregnancy has been fairly easy, apart from fatigue. Chris is absolutely the most supportive and positive partner I could ask for and has kept me sane and comforted though the bouts of stress and worry.  

I’ve learned nothing goes as planned, but we do the best we can with the information we have! I’ve also learned that mom instinct is legit. We still do not have confirmation about her Turner Syndrome and we won’t until after birth. We continue to be closely monitored in case any interventions are needed in the coming weeks. 

I’m so thankful for our little Violet, the amazing support system that I have in Chris and the rest of my family/friends (including all the puppy cuddles!!) and we are hoping for good news about her growth at our next scan.

Be well,

Samantha!