Friday, October 14, 2016

Our Journey Through Fetal Medicine: Things Aren't Quite Right

After I found out I was pregnant, I immediately called my OB's office to get the ball rolling. I had been breastfeeding up until a few weeks before this, so I really had no idea how far along I was. Despite my pleas, the coordinator would not let me see the doctor until she felt I was at least 8 weeks. She would not even let me schedule it. I pushed pretty hard and kept saying she did not understand and that I did not really even know how far along I was. But she took it upon herself to tell me I was not far along enough yet and I would just have to wait.

My first lesson in this journey was to trust my instincts. I knew I needed to see the doctor. I knew. But after a bit of pushback, I did not want to be that mom who makes the OB's office hate her. So I waited.

The first appointment started out pretty standard. We went in and had to pay for the entire 9 months plus delivery up front and were herded through that process quickly as they see this routine day in and day out. I love (LOVE) our OB; but I felt like no one in the front office was sharing our experience. I was already a wreck, and when no one in the front office seems to care about the miracle they experience every day, it is a bit disheartening. But I was FINALLY there, and I was going to soak up this moment and this pregnancy. And I had vowed not to complain about pregnancy so much this time around.

We went into the ultrasound room knowing fully what to expect: to see our little baby so tiny and get the rush of love that flushes over you when you see the wee one for the first time. Except this time it was different. The tech began telling us everything she was looking at and measuring and finally said, "Are you sure you are only 8 weeks?" I said absolutely not. She said, "Okay, well, honey, congratulations. You are 11 weeks."

Praise! I had been so sick and this meant I was on the downhill slide. Plus, I had just basically skipped 3 weeks of pregnancy! Woohoo!

But then she told us that she was seeing something she had never seen before and would have to get the doctor. This was not that rush of love or excitement I experienced with Henry. This wasn't what happened ever. So we sat and waited for the doctor.

That day we learned the baby had fluid in its abdomen. The OB said this could be a range of things but only time would tell. We could be seeing anything from Down Syndrome to a fluke to a coming miscarriage. I will never forget what he told us next, "I may see you in the next few weeks due to a miscarriage. Please come to us; do not go to the ER. But remember this: there are worse things than a miscarriage."

I sat stunned. Luckily Cash had come with me that morning at the last minute. I held it together until we got to the car, and I just lost it. Miscarriage?! A genetic issue?! How could this happen to our little baby? I had not even appreciated the pregnancy fully yet. I was still reeling with Baby #2 guilt. And now this--I began to feel like the worst mother in the world for having guilt for being pregnant again. I also felt hopeless.

And how is anything worse than a miscarriage? I tried to see his point. At the time I thought I did. But what the next few months would show me was that I had no idea how right he was.

Once we got home I tried to call my mom. I may have gotten out 3 words before Cash had to take over the conversation. I was a wreck. I laid in bed the entire afternoon while my husband watched Henry and checked on me throughout the day.

My emotions were everywhere. We did not have another appointment for 4 more weeks to find out more what was happening. Within a week our blood tests came back showing us at a low risk for any genetic conditions. That felt like a huge relief. In my head I kept thinking, "Okay, I can do a surgery or two. Or maybe it's a fluke." By the time 4 weeks was up I was convinced it was a total fluke.

We prayed quite a bit during this time. My husband fasted twice. People called giving their support and saying they were praying for us. The morning of the appointment we sat as a family of 3 and my husband prayed over us. You have such confidence in that. You know God is hearing you. When those 4 long weeks were finally up, we went back to the OB. I was not worried. I had prayed so hard, and I just knew a miracle was going to happen and the doctor would say, "Oh, nevermind, it was a fluke." And life would go on.

But when the tech turned on the ultrasound machine, both Cash and I knew immediately. It had not been a fluke. No miracle had been performed. Our baby's bladder was now much bigger than its entire body. Even we saw that.

The OB came in and said how sorry he was that this was happening. He could tell the fluid was in the bladder (not the stomach) and thought it looked like Prune Belly Syndrome. But he said he was not a specialist in this so he was sending us to the perinatal center where doctors were more highly trained in fetal medicine.

I had no idea what had hit us. What? I thought my OB knew everything. Specialists? Who is more specialized than my OB? Not a fluke? I was pretty sure God had heard all those prayers.

And we thought things were super optimistic because it was the bladder. I googled Prune Belly Syndrome and found it was not a good prognosis, so I dismissed that readily. Yeah, our baby has some issues but goodness gracious they aren't that bad, I thought.

To learn more about our journey through fetal medicine and read through each phase, you can go click on a link below that will take you directly to that post:








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