And then the REAL paranoia began..Disclaimer- this is a very long post detailing some things we have had to deal with this pregnancy. This has the potential to bore you! You've been warned.
When we first found out we were pregnant, I was crazy paranoid. I was constantly checking my underwear for blood. I freaked out at every cramp and twinge I felt. I was so worried about losing the baby. Which is funny, since I've never had a miscarriage. I think it was just way too hard to believe that it was actually happening. Once we hit the "safe" zone and I began to feel movement, I settled down a lot. The second trimester was really an enjoyable time for me. Sure I had some worries, but all pregnant women do. I really thought I might make it through to the end of this pregnancy without a full-scale melt down. Haha, I'm such an idiot.
Fast forward to 28 weeks.
I had just started my 3rd trimester, was feeling good, and was super stoked to be getting my first growth scan. My doctor wanted me to have an ultrasound every 4 weeks starting in my 3rd trimester. My anatomy scan at 20 weeks had shown everything being perfect, so I was excited for these ultrasounds. Extra chances to see the baby and more peace of mind! So I thought.
I couldn't sleep the night before the scan. I had no idea why. I woke up every hour, very anxious. I couldn't figure it out. I usually sleep like a rock when pregnant. When it was finally time to get up, I was exhausted and anxious. I knew something was wrong, but I pushed those feelings aside. I told myself I was just being paranoid because of Madelyn.
We drove to the hospital. It was the same hospital I went to with Madelyn. It's where we had her anatomy scan at 20 weeks, and it's also where we found out she had died, and where I delivered her. A lot of people told me to change our doctor and our hospital; that it would bring back too many painful feelings. But I liked it in a way. I was replacing those sad memories with happy ones. I was making the hospital and my doctor's office positive places again, instead of ones that haunted me. Plus, my doctor is the bomb. I wasn't giving her up. I had no issues the whole pregnancy with triggers or anything like that.
We waited forever to get called back. I scheduled the first ultrasound of the day to avoid having to wait, but the doctor was late. My anxiety got worse. We finally got back there and got started. Things were going great. The technician laughed at how much she moved and how she spread out and relaxed all across my belly. It was about 10 minutes into the ultrasound when I knew something was wrong. She was measuring the brain, and staring a little too hard at the screen. I had seen that happen once before: an ultrasound technician lingering a little too long on one image; staring really hard, looking confused. My heart sank. She measured the same area of the brain over and over again, saying nothing. Then she moved on and looked at a few more things before telling us the doctor would be with us in a just a few minutes to explain the results. I had been told that before. The first time I had called after the technician, "Is my baby alright?!" and she had just looked at me and said, "There might be something wrong." But I knew exactly what was wrong.
I didn't call out this time. I had seen her beating heart, I knew she was alive. But I also knew something didn't look right. And I felt sick. The doctor came in quickly and she was wonderful. She did another quick check of things and, of course, went right to the brain to take measurements. Then she took the wand off and said, "Now I need to talk to you guys about something I am seeing in these images."
Wooohooo! Those words didn't make my stomach fall out of my butt or anything.
She told us our baby's brain ventricles measured a little bit larger than normal. She told us they had a bit too much fluid. They should be under 10mm, and they were 11-12mm. She said it could just be normal variation and everything was fine. But, it could also mean Down Syndrome. Brain Damage. Infection.
Just the words I was hoping to hear!
She said it was a good sign that they weren't too big. She said it was a good sign that it wasn't seen on my 20 week scan. She said most likely, it would be fine. But it could also be very, very not fine.
I will tell you that that day was not easy. I cried harder than I had cried in a long time. We had waited so long for this baby. We had lost so much. It didn't seem fair. We had just begun to feel excited, and now everything was ripped away. I was heartbroken. I also had my first experience with the triggers everyone said I would have. There I was, in the same hospital where I found out about Madelyn (just a few rooms away in fact), learning that my new baby could have some very serious problems. All those emotions of being given the awful news about her death came back. I felt like a failure, like my body was incapable of growing healthy babies. I had beat myself up so much when Madelyn died. There was no clear answer as to why she died, so I blamed myself for a long time. All that guilt came back and I blamed myself all over again. I was selfish for getting pregnant again when, clearly, I was not made out for this baby growing stuff. The day was long and so was the night, but by the next day, thanks to a wonderful priesthood blessing and lots of prayers from our families, I was feeling much better.
We were offered some options and we decided to go with a blood test to check for the infections that could cause mild ventriculomegaly, which is what we learned was the diagnosis for our little one, as well as a blood test for Down syndrome. That test was expensive, and we labored long and hard over whether or not it was worth it. Luckily, we have loving family members who encouraged us, and even offered to pay for it. (Shout out to you Daddy! Don't think I would have gotten the test without you). I got all the blood drawn (seriously.. soooo much blood) the next day, and we waited.
We got the results about infection the next day. Negative. I was incredibly relieved, but I also knew we had a whole week to wait for our Down syndrome results. It is an incredibly complicated test where my geneticist actually goes through my blood looking for traces of the baby's DNA, and then has to test and process the baby's DNA. Crraazzzyy. My geneticist, Laura, was the best. We talked a lot and she promised to rush those results for me. And she did.
I was calmer than I thought I would be. I read a lot about mild ventriculomegaly and about Down syndrome. I have worked my entire life with kids with special needs. In fact, it was a very special little boy named Ben who had Down syndrome that convinced me, at the age of 14, that I wanted to be a special ed teacher. I love these amazing, beautiful children. But I had never thought about raising one myself. I had a lot of deep thinking that week.
The main thing I came away with every time I thought about a diagnosis of Down syndrome was this:
As long as she's alive, I'm fine.Maybe that's my somewhat skewed perspective from what I have been through, but I couldn't think of a worse diagnosis than "no heartbeat." Surely I would cry and surely it would be hard, but last time I had to give birth to a baby with no heartbeat, and then I had to watch her be wheeled away. Giving birth to a baby with disabilities, but getting to keep her has got to be much easier. Right?
Laura told me she would do all she could to get me the results on Friday, which would be exactly 1 week of waiting. I felt calm and comforted all week, until Friday morning. Suddenly, Down syndrome wasn't just something I was googling and thinking about, I was going to find out that day whether or not it was going to be my reality. I think waiting for the call is million times worse than knowing the results. That was a loooong day. And the call didn't come until
4 freaking 30.
The results were negative. And, they told me, 99% accurate. My chances of having a Down syndrome baby went from very possible, to 1 in 10,000.
It was a relief. We said many prayers of thanks that night. (Another shout out to both our families who had family fasts and prayed for us and our little girl. We felt your strength!) We would have loved the crap out of that little girl no matter what, but it was comforting to check one more thing off the list of possible problems.
There was still the issue of possible brain damage or delay. Which, really, we can't know 100% until she is here. Those thoughts still weighed heavy on my mind. I teach kids with delays and brain damage, and it always breaks my heart how hard life is for them. How would it feel to have a child with those same difficulties? Would my heart break a million times more?
We tried to push the thoughts from our mind. I saw my regular OB the next week and she was so sweet. She said she was mad when she heard what they found on the ultrasound and that we shouldn't have to go through things like that. She said she checked multiple times a day to see if my results were in and she cheered when they all came back negative. She is my favorite. She reassured me that since the ventricles weren't
that much bigger than they should be, and that all the major things had come back negative, our baby would most likely be completely and totally healthy. It was really comforting.
We went back for our second growth scan today. Her ventricles are still around 11-12mm,
BUT they haven't grown, and that's a good sign. I had a different doctor this time and he was great. He told us stories of cases he has seen of mild ventriculomegaly where everything was fine. He says brain damage really isn't a concern unless they are at least 15mm. He said she wouldn't even need them drained or anything like that. He said everything else looked perfect and that we really shouldn't worry at all. He said we were measuring just a few days ahead and that was great. This little girl already weighs almost a full pound more than her big sister did when she was born at 34 weeks, and we are only 32 right now. The doctor says Madelyn probably stopped growing around 32 weeks. Why, we don't know. But it's reassuring that this one is growing on track, and that she will be monitored so closely.
After the ultrasound I went for a non-stress test where they monitor the baby's movement and heart rate. Everything looked great there too! I have another ultrasound in a month, and I will have a non-stress test every week until I deliver.
It's been a whirlwind of a past few weeks. My emotions have kind of been all over the place. We really only told family, so you close friends of mine who are reading this and mad that I didn't tell you, please don't be offended! It was hard enough trying to process how I felt, let alone explain it to other people.
Nathan asked me why I thought we had to go through all the worry and stress only to find out nothing was wrong. Honestly, I don't know. But I see these little tests of patience pop up in my life all the time. Last year, I learned to lean on the Lord and trust in him and his timing in a way I had never had to before. I think sometimes He is making sure I remember that lesson. It's a valuable lesson that was heartbreaking and rewarding to learn. I know I will need it for the rest of my life. So if He needs to remind me sometimes, I guess I am okay with that!
I am feeling very calm and comforted right now. We don't know 100% that everything is okay, but I am alright with 98%. I am so thankful I will have so much monitoring all the way until the end. I am thankful for modern medicine, and the amazing doctors and nurses who we have worked with. I am thankful for endless prayers and love from friends and family. I am thankful for a Heavenly Father who knows what he's doing. I'm thankful for a husband who holds my hand through ultrasounds, and lets me cry like a baby when I want to. And I am really, really, really thankful for this little lady inside me. I can't wait to hug and kiss the crap out of her in just a few short weeks.
