FOR THE STORY FROM THE BEGINNING SCROLL TO THE VERY BOTTOM – THERE IS ONE ENTRY BELOW THIS ONE.
Since January 30th, we have had upwards of 10 appointments seeing several different doctors and having an ultrasound each time. The amount of information whirling around in our brains at any given moment is overwhelming.
From this point forward we will post an update after each appointment, this will help you stay informed. It would take many, many posts with a lot of detail to go over what has happened at each appointment up to this point, however I feel that the very first appointment with Dr. Stanley was particularly important to Audrey’s story.
Our first appointment with Dr. Stanley was on Friday, January 31st. I was flanked by my loving, quiet and supportive husband on one side and my rock, protector and biggest fan of a father on the other. My mom stayed behind to have Cooper for the day and get him to Chris’ parents for an overnight. All four of our amazing parents played an invaluable role during these couple of days.
We waited a bit but really not too long in the grand scheme of things. In fact, Dr. Stanley was literally only seeing myself and one other mama-to-be that day because he was leaving for Chile the next morning.
They called us back and a sonographer performed a lengthy and extremely detailed ultrasound. We asked a few questions throughout but she wouldn’t say much, just that we would need to wait for the doctor. Good times…
After what seemed like an eternity, Dr. Stanley entered the room. He and my dad are colleagues so it helps that he made us feel at ease as he shook our hands. He then did an ultrasound himself…again, this felt like hours. He didn’t say much…we didn’t ask much. This beautiful office has oversized flat screen monitors on the wall for a perfect view of what they are seeing. Chris stood close to my side and my dad, studying every glimpse, kept his arms crossed and moved a little closer and closer to the screen.
Finally, Dr. Stanley wiped the warm goo from my belly and suggested we find a different room to talk about the findings. This was another moment I knew there was something bigger, something more than her brain.
We were escorted to a less serene room. This one blasted harsh florescent lights and felt cold and sterile. I sat up on an exam table, Chris and my dad sat in chairs along the wall and Dr. Stanley wheeled up on a stool. He was closest to me, but looked at all of us in the eye the entire time.
With a long face, folded hands and sad eyes he proceeded to deliver the news. Regarding her brain, what he was seeing was a fluid-filled cyst in the back of her brain, the cerebellum. The cyst caused the cerebellum to “splay” and not develop normally. He guessed this to be Dandy Walker Syndrome. He went on to tell us that in addition to her brain deformity, her heart showed abnormalities as well. Her pulmonary artery was too small, she had a ventricular septal defect, it appeared that her right ventricle was enlarged and that her aorta was misplaced. All of these things add up to be what is called Tetralogy of Fallot. Most of what he said made sense, but at times I felt like he was speaking in another language completely. He suggested that we do an amniocentesis to help determine what chromosomal disorder(s) that is likely the culprit of these anomalies. He gave us some time to think it over, reminding us that the amnio itself can carry some amount of risk of losing the baby. After I all but decomposed and had a break down, Chris and I decided that it would be important to know everything we could about our girl.
The amnio wasn’t pleasant…at all. We were all on edge, including Dr. Stanley. I could tell he was a bit nervous. He walked me through each little thing he and the specialized sonographer were doing. I didn’t watch anything except the screen…kept my eyes on my baby. He puts this needle in – it hurts – and unfortuniately my low fluid wouldn’t allow them to make the draw. Bummer. So, they looked around a little more and tried to see if she would change position. She did, so they stuck me again. It was all uncomfortable and painful but we all made it through and they got the appropriate amount of fluid.
The appointment wrapped up after that. He gave me a few post-amnio care instructions, we scheduled an appointment for two weeks later and he was on his way. I had another minor breakdown. Sobbed, big heavy cries.
Chris and I went home and my dad back to Stillwater. Driving home was strange. Everything felt like it was moving in slow motion. I wondered why this was happening. Wondered what I had done to cause this even though he told me multiple times there was nothing. I started to feel uncomfortable in my own skin. I didn’t feel like myself. I didn’t recognize these emotions or feelings. I so badly wanted to rewind 24 hours when I was blissfully unaware of how sick our baby was and we were off for a weekend getaway.
But I couldn’t. We were smack in the middle of reality and it hurt.
Between that day and now, we’ve had many appointments, with many highs and lows in between. Our options were to continue the pregnancy or choose to terminate. We researched, talked to each other, talked to people we trust, and prayed…a lot. Ultimately, we chose life for Audrey. We don’t know how long that will be, whether or not she make it into this world alive. We don’t know what her quality of life will be if she does survive, but we are trusting in a plan that isn’t ours. Trusting in a God that is bigger than us.
Starting at 29 weeks, we see Dr. Stanley on a weekly basis. Last week there wasn’t much change, she had gained a few ounces but remained very growth restricted. The cyst in her brain continues to grow a bit larger. Her heart defects remain the same. Tomorrow, Dr. Stanley will have a recommendation of the plan for delivery. It is still very possible that she will come early, come on her own or potentially not make it to a live birth. He feels, however, it is best to have a plan of action in place as we near the end of the pregnancy. I am 31 weeks currently.
We’ll post another update after the appointment tomorrow.
To each of you who are loving and supporting us through this, thank you. I don’t know what we would do without you.
Love and hugs, R