Amniocentesis

Today I laid on the couch and watched Friends for much of my day. Friends is still playing as I type. It's helping, for certain.

I had to take the day off of work to get an amniocentesis. I'll be back at work tomorrow. I was given strict orders to be a "couch potato." I took those directions very seriously.

An amniocentesis can give us pretty accurate information regarding our little Nora's diagnosis. It is testing primarily for four different chromosomal syndromes: Downs, Turner's, Trisomy 13 and Trisomy 18. I literally have no idea which of these syndromes are one to hope for..they have all their challenges. Babies that do make it full term with Turner's syndrome generally have a good prognosis, but it is rare to make it. Babies with Down Syndrome have a large variety of struggles they may face, but I know more about it, so it seems a little less daunting? 13 and 18 are both terrifying as they have a generally grim prognosis without much success for life even if we go full-term. All of them have some fear to offer me- though some more than others.

I was very hesitant to get this testing done in the first place.  I was incredibly indecisive. On one hand we could come out of it with some answers that right now we just don't have.  But, on the other hand, the answers could bring more pain than I may be able to bear, and none of the diagnoses would really change little Nora's condition regardless, so why do it?  I know that no test can answer the questions I really need: Will Nora live? Will we meet her? No matter what test results we get, we still don't know the outcome. Why not just let her live and accept that God will decide Nora's fate?

But, I decided to take the test. I chose to for a couple of reasons. The first reason being, living in the unknown is hard. I'm slightly terrified that living in the known will be even harder, however. The verdict is still out on that one. The second reason being, it may give us some answers that can help the doctors figure out the best path for delivery and post-delivery before we get to that point. For example, surgeries Nora may need, or if my health takes a turn for the worse during delivery they may know whether or not to be too invasive or too aggressive. Finally, it meant a lot to Kevin. Kevin has been an absolute gem through all of this, and he allows me to make the decisions about my body on my own- but I know that Kevin needed to know. And that, to me, meant a lot.

So, today we drove to that dreaded doctor's office. I realized as we drove up this morning that my anxiety levels near that building are nothing short of sky high. I was struggling to breathe and think as we waited for what seemed like an eternity for them to come and get us for the test. Finally, they came.

It was clear the doctors could tell I wasn't coping well, so they apologized a lot and rubbed my back. They took excellent care of me. They explained everything we're doing, how long test results would take to get back to us, and next steps. Then, they cleaned me up, put on that ultrasound machine and let us hear little Nora's heartbeat once again. 155 today. Still beating! Still strong! And just like that, I was able to relax again. Then, I closed my eyes and let them do their thing. A needle went into my stomach and took three large viles of fluid. One for each test they are getting results from. They said Nora would replace that much fluid in 24-48 hours. When they asked, "how are you doing?" I responded with, "I could sure use a drink." They retorted with, "as soon as we get this needle out of you, you can! They do in France, so you might as well." I laughed (I didn't come home and drink, but I appreciated their honesty and humor).

Then, they took a vile of blood from my arm for some other reasons I don't even remember and sent me off to another doctor for a shot of sorts in my hip. I've been poked and prodded, and well cared for all the while.

As I cried in the arms of one of my co-workers yesterday they told me, "You have to have hope, Deidre." As I confessed that I was terrified to have high hopes in fear of horrible pain that might come after thoughts that are more positive than our outcomes, she said, "Deidre, if you're worst happens, you're going to be devastated regardless of how high your hopes were. It just sucks all around. There is absolutely nothing you can do about that. But having hope may have a positive impact and if it doesn't, at least it gets you through the day." (I am certain there is some paraphrasing done here, but I think you get the idea). This advice is carrying me right now.

While I still have dark and low moments, I know that positive thinking and prayer is the only way that I can get through this. Until the worst happens, it hasn't happened. And grieving a loss that hasn't come is silly. SO, here is to positive thinking!

I started with my first positive thoughts when they offered to let us meet with a cardiologist next week to let her have a look at Nora's heart. I think in my low, confused and half-hearted state on Friday I may have misunderstood the doctors statement about Nora's heart. I know nothing about our anatomy and little about heart development, but what I heard him say was something like, "Her heart ventricles seem flipped. The left (or maybe right?) should be larger than the right (or maybe left?) and they seem flipped. As I look at the chambers I notice the that right (or maybe left) is larger than the left (or maybe right?) So that tells me that they are definitely flipped." This to me meant something like the parts are flipped and in the wrong places. BUT, upon further discussion with Kevin (obviously, a doctor may have been a better choice to discuss this with) we decided he meant the parts are all in the right places, their sizes are flipped. Google (again, a reliable source) led me to a site earlier today that made me think that this defect is caused by a blockage in the aorta and "can be fixed with surgery after birth." NOW, Google and Kevin are certainly not sources to take too seriously, but between the two I've found  momentary hope. That hope I am holding on to until I hear otherwise from a cardiologist next week.

The simple fact that I am meeting with a cardiologist gives me hope that little Nora has a chance to survive! I'm running with that thought and it's put a new pep in my step.

Right now, I miss my dream of a flawless (for this moment synonymous with "normal")  little girl that I dreamed up before all of it came crashing down. But, I know that even with physical flaws and hurdles to leap my girl can be the biggest blessing we'll ever know. So, I'm hoping (maybe against hope) that she can indeed be that for us!

Keep Nora in your prayers (and maybe Kevin and I too! We sure could use it!)!
Thank you all for the support- every email, phone call and text message means the world to me right now.
Thank you!