The last time I wrote about this journey, I shared the initial news and the first couple of weeks processing this information. It hasn’t gotten any easier and I’m not super convinced that it will but the next step was to head in for CVS testing and blood work after I got back from my conference.
I had prayed we’d see a miracle at this appointment. That it was just a fluke thing and the baby was too small to get a great picture 2 weeks before. But there was this nagging feeling within me that that’s not where God was taking our story. And with that feeling, I prayed we would discover the baby passed on its own and there would be no heartbeat. In all honestly I just wanted any decisions out of my hands. And a miscarriage would be the most merciful end to this pregnancy.
Before they started the US I explained to the tech that we’d already had our worst case scenario and asked that he please just walk us through this and tell us what he was seeing. I told him I didn’t care if he was right or wrong, or if they doctor came in and found something different, but I just wanted to know. I didn’t want another experience of the doctor coming in and the ball dropping with all this bad news and me just over here thinking things were looking up.
He was so kind and with each passing sweep over my belly told us everything. To the point of asking if it was too much and if I needed less information and I said no, no, please keep it up, it helps to know. And there, right at the very beginning, that heart beating. Unmistakable, going strong, as if there wasn’t a care in the world. My heart sank. You might not be able to imagine how an expectant mother could say that but it did. I knew a decision would be in my hands and it was one I didn’t want to make.
The US progressed, we saw the limbs had begun to develop which seemed like progress but they were not nearly the normal length or formation, and while we could see some fingers, neither hand seemed fully formed and it was unclear if there were feet. No extremity was normal. And the jaw, that still wasn’t normal either…still sitting very far back, which was the first sign on the previous US that something was off.
And this is what I presume is the cause of the stillborn prognosis we’re facing. At least the medical side of my deductive logic tells me if a jawbone isn’t forming normally and is sitting that far back, it will prevent a functional airway. So while the baby can survive in utero, it can’t survive the world.
And still the examination continued. Spinal length, normal. Internal organs, appeared normal. Skull seems to be formed and from what they can tell the lobes of the brain look perfectly normal too. The heart looked good with no evidence of defect. So many parts of the body fine and yet still very little hope of life outside the womb.
The tech reviewed the images with the doctor and she joined us in the room. She was not so convinced of the Trisomy 13 diagnosis we’d previously received. In fact, she wasn’t so sure about any of it. She essentially said no matter what we find out from these tests, we may still have a lot of questions with very few answers over the course of this pregnancy.
Then the description of the CVS procedure. One pretty easy and one VERY painful if the first method didn’t work. Apparently I’ve got some kind of tilted uterus. Nothing concerning, a variation of normal, but positionally can make the first test difficult. I had to empty my bladder (and all the pregnant girls said AMEN!) and they did a quick check for position. It was PERFECT to start the procedure (the easy way) so we did.
Think a more involved pap smear with more discomfort and pressure if you want to know what this test is like. They basically insert a catheter intravaginally and suck out a piece of the placenta. But it was like as soon as we started things started shifting and she wasn’t sure if we were going to get the tissue sample the “easy” way. I remember saying “why is everything worst case scenario”? That’s just how I felt in that moment.
I’m thankful for a doctor who kept trying. She even called another tech in to assist and through a lot of teamwork and some pretty intense positioning and breathing to relax which I’m not sure I ever fully did, she finally got things in the right place and was able to proceed. For whatever reason it calmed me to watch the procedure on the monitor so I just kept my gaze there.
Thank GOD we got a good sample and did not have to do the painful version of the procedure…that one btw involved a needle inserted into my belly and a need to go in several times that way. I was needless to say completely dreading that option and 100% grateful we didn’t have to go there. Things were bad enough!
They drew blood from both Brett and I so they could make comparisons between baby and us and that sort of wrapped up that visit.
The doctor had told us the results come in phases and we got the first set today…no trisomy 13, 18, or downs syndrome. She even said the tests looked “good”. Wait, what?! We know things aren’t good, we could all see things aren’t right. She reassured us that she knows this is hard…not knowing. She was really concerned we wouldn’t get the answers we were looking for. She knew I just wanted answers, clean-cut lines, so at least I could know what to expect. She was worried we just might not know based on US and these tests and she knew that’s basically what she was confirming with this phone call.
So long story short, we wait. Not a lot of hope or reassurance of a different outcome. No real answers other than it’s not what we thought at first. SUCH a hard place to be!
I don’t know what to say. I don’t know what to pray for. I completely lack focus. It’s a good thing we’re headed out on vacation! We’re going to do what we can to enjoy this time away.
Somewhere in this I know there’s purpose but that, in all honesty, is not comforting at this time. Right now, we’re just trying to get through. We continue to be flooded with prayers, love, and support and we are so grateful. In the meantime, we wait…