I'm not sure when to begin. I have really lacked documenting this pregnancy and now I regret it which I knew I would eventually would. I haven't had the motivation because I have been so worried from week 12 about these girls. It's hard to take belly shots and post about mundane symptoms when I fear that something is really wrong.
Let me back up...We found out in August we were pregnant after our 4th round of IVF. We were thrilled but I had the typical 1st trimester nerves. We went in for our very first ultrasound at 7 weeks. We saw two little heartbeats but something didn't sit right. Baby A's heartbeat was on the low side of normal. Baby B's was good although not as fast as Sam's was at that stage. I thought I was having boys again. I was not convinced Baby A's would still be beating at our 9 week ultrasound. We returned at 9 weeks and both of their heartbeats were super fast and I was finally a little relieved but still had that early pregnancy anxiety.
Fast forward to 12 weeks when we had our first OB appointment. We knew we would get another ultrasound and were excited to have that sense of relief seeing two heartbeats still. The tech started scanning us and we saw two great heartbeats. I was relieved and thought I could finally start being excited. That feeling quickly ended when the tech was scanning Baby A pretty extensively. She was looking at blood flow in the heart and measured the NT (something that I knew was not a normal thing). I tried not to panic but as we were waiting for her to come back into the room after the scan, my mind was racing. She came back and asked her why she measured the NT. She simply said it was abnormal and the doctor would talk to us about it. My heart sank. In my profession and my obsessive need to know superfluous information about pregnancy and fertility, I knew this meant something might be wrong with our baby. Our doctor came in and started talking about markers for chromosomal abnormalities. My head was spinning. I was desperately trying to hold out some hope that it could be nothing but they wanted to be honest and let us know the odds were still in our favor but not great (about 1 in 5 for Down's Syndrome). If the chromosomes were normal, we may be dealing with a heart issue. We set an appointment to meet with a genetic counselor the next day and she was really great but even more gloomy than our wonderful doctor was. She went over testing options and we opted to not do anything invasive. We had the blood test, MaterniT21, that is over 99% accurate. We felt comfortable with that even though it only tested for the most common chromosome issues. For 7 days we prayed and waited and pondered what our life would be like if we had a child with Down's Syndrome (their most likely guess). I was scared and devastated but after making a trip to the LDS temple, I felt like things were going to be okay. I prayed for peace and comfort for our family. I was in California and Michael was on business in Wisconsin when I got the results and found out that our girls were GIRLS, and they both had typical chromosomes. No Down's, no other Trisomies. Hallelujah! We were told there was still a potential heart issue and that we needed to monitor closely but we were relieved we weren't facing the challenge of having a child with a chromosome issue.
Scan after scan, she was doing okay. They saw nothing at the 16 week ultrasound but her growth was a little behind. I wasn't too concerned. She was actually catching up to her sister. Baby B was 4 days ahead of my due date and baby A was 4 days behind my due date. They don't like to see twins with more than week difference in size. So, her growth was one more thing they needed monitor closely.
It's amazing how fast things can change. At my last ultrasound, I was 19.3 weeks. I was nervous knowing this was the "big ultrasound" where they scan all the anatomy and we could better tell if there was a heart issue. I was also anxious to see if she finally caught up with her sister in growth because that is how she was trending. The tech immediately started scanning and my heart sank. The first measurement came back 17.4 weeks. I couldn't believe she was so small. By the way, you know things are not good when the tech is quiet. We have had a lot of quiet ultrasounds. When things are good they are more than happy to comment on how perfect your baby looks. She moved to the heart and I asked if there were four chambers and she said yes. Something didn't look right to me. She moved to the legs and I could tell something was off but again, didn't know what. She said she was all done and the doctor would be in.
This was the first appointment we had where we didn't see my normal doctor. We saw one of his partners, Dr. Sullivan. She was wonderful too. She got right to the point and told us the things that were concerning. First, her growth. Very concerning that she fell so far behind. The heart didn't look normal to her either but she is not a specialist so she couldn't say what. The baby's right foot looked like it might be a club foot. And finally, the bowel was showing up brighter than normal (called an echogenic bowel), a marker for chromosome issues. Naturally our heads were spinning and we wondered what we were dealing with since we already ruled out the most common abnormalities. Was it something super rare that no one has heard of before or was it nothing at all and "just a heart issue"?
We opted to do the amnio this time. I was a ball of nerves with the small risk associated with it but I knew we needed to know what we were up against. It hurt. I hope I never have to do that again. We were told we would have the preliminary results in 48 hours which put us to Black Friday so maybe not until Monday. I wasn't too anxious about those results since we had already been tested for the disorders that come back initially. Oh man, was I wrong.
Dr. Draper text me on Saturday morning and asked if I could call him. It's never a good sign when your doctor wants to talk to you asap. My heart sank and I got teary. Michael was outside working on Christmas lights. I ran out to get him as I was dialing. When they told us at 12 weeks that it was probably Down's Syndrome I was devastated but after a little while I felt up to the challenge to raise such a special spirit. However, I was relieved that it was not DS when we got the results of our first test. In that moment I called Dr. Draper, I found myself hoping for the thing that I feared the most. I was hoping it was DS. It was not. He told us it was Trisomy 18. He asked me what I knew about Trisomy 18, or Edward's Syndrome. I told him I knew it was "not compatible with life". That's a pretty harsh label, "not compatible with life". I knew that most Trisomy 18 babies did not make it to term and if the did, they only live for hours to days if you are lucky. Every case is so different to so it's hard to know what to expect.
So, for that past few days we have been crying, processing, and praying. Our greatest hope and prayer is that we get to see her alive, even if it's just for a moment. We are in a very unique situation, having another baby to grow as well. If she passes away in utero, I am at greater risk for preterm labor than I already am with twins. I am really hoping to make it to 37 weeks. I really need to bring one baby home with me. I don't think I could bear leaving baby B behind in the NICU. My greatest fear is losing them both. We have no reason to suspect baby B is not completely healthy.
This is something that we never thought we would be faced with. I naively thought we did the hard part. Getting our babies here has been such challenge that it wouldn't be "fair" if we lost one. Now, burying a child is very real to us and we are trying to navigate our way through what lies ahead. I have asked, "why us?" but then I thought, "why not us?". No one has something like this happen to them and thinks, "oh yeah, I see, I had this coming to me". I am trying to sort out my emotions because they can be very confusing at time. So much grief with so much joy and gratitude that I was chosen to be these girls mom and carry this special spirit. I get most emotional that Sam and her sister will never know her in this life. Her sister should have her twin with her. It's not fair. I have so much more to say about how I feel but I will have to save that for another day. For now, I am just trying to enjoy and appreciate everyday we have with her. This has made me want to document like crazy and celebrate all the milestones in this pregnancy.
I love you, baby A. Hopefully we will have a name for you soon so you don't have to keep being referred to as "baby A".
13 years ago
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