Okay, it's another insanely long post. But again, I did this for me. I want to eventually put all my posts in a book for the kids, and I think this needs to be in it. On the bright side, there's some great ultrasound pics at the end :)
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Dr. Davidson, my awesome OB doc called me on a Sunday night, just over a month ago. And let's just say, it's never a good thing when the doctor calls on the weekend. Although, if bad news must be delivered, it is better to wait until Sunday, as opposed to Friday. That way, one doesn't have to wait the whole weekend to get more answers. I am grateful that she had taken that, as well as Tracy only being home on the weekends, into consideration.
I had been in for a standard prenatal appointment the Wednesday prior. She ordered the typical blood work. I had passed the 16 week point, which meant I needed to get the quad screen done. The quad screen is the test that can indicate birth defects by measuring about 4 different hormone levels that have been passed into my bloodstream from the placenta. Then, taking the measurement of those levels, as well as my age and gestational age of the baby into consideration, the findings are compared to a data base to see if my levels fall within the "norm". Studies have found a trend of abnormal hormone levels in the mother to babies born with birth defects and genetic problems such as spinal bifida and Down Syndrome.
I debated as to whether or not I should get this test done, as we have had a "false positive" (for the lack of a better word) when I was pregnant with Aleana. The test showed she was at a higher risk for have Trisomy 21 - also known as Down Syndrome. The Doctor at the time recommended that we terminate the pregnancy. Of course, we didn't. It certainly scared us, but as we got more information, we learned that the risk wasn't that high. We did get a level II ultrasound, which was really fun to watch, and she looked just fine. There were no soft markers to indicate that she had Downs (soft markers meaning certain visible birth defects that can be detected by ultrasound, such as abnormal heart, longer limbs, forehead size, jaw size, etc.). We were given the option to get an amnio done, but we declined. The risk of miscarriage due to the amnio was greater than the risk of Down Syndrome was. We felt good, and thought she would be fine. But we did try to prepare ourselves for the possibility, and strongly felt in our hearts that whatever way she came, she was meant to come to our home and be in our family. I gained a stronger appreciation of parents who have children with Down Syndrome, and the love, beauty and sacrifice that is there. And of course, we all know the outcome, she was born perfectly healthy without any complications. So getting this test, I knew that it isn't always "right", that it's just an indicator, not a diagnosis.
As Dr. Davidson was talking to me about the results of my blood work, I fully expected her to tell me that my levels were abnormal for Down Syndrome. No biggie - this was something I have dealt with before, and I knew the process. She went down the list, and said that it wasn't Downs. My mind started racing. It was something else. My levels came back abnormal for something called Trisomy 18 (T18), also known as Edward's Syndrome. My. Heart. Dropped. She asked if I knew what that was. Yes, I knew...I just kept thinking...please don't let it be this...please don't let it be this...my mind clouded and eyes began to do the same. She asked if I had any questions. Of course I had questions...lots of them. Forcing myself to think clearly and not burst into tears, I asked. And she did really good at answering them (which is something that has to be hard in situations like this). I asked for risks/odds numbers, how many had she treated in my same situation, and so forth. The outlook was not so good. Since they added T18 to the screen, she had only seen 3 other patients with abnormal readings. Two that were a false positives, and one did actually have T18, and there was fetal demise at 39 weeks. These types of test results are much more rare than with Down Syndrome, partly because with Downs, all 4 hormone levels are abnormal - which could mean that the placenta is too thick to allow them to pass through. With T18, however, only 3 of the 4 are abnormal. To make matters worse, my numbers were horrible. On average, 1 out 6000 babies are born with Trisomy 18. My risks came back with 1 in 10. Quite the difference.
I hung up the phone, and started sobbing. Not the ugly cry, or the hurt cry. It was the helpless, bottomless pit, hole in the heart, kind of cry. I had just started to be excited about this pregnancy. I had passed the crucial 1st trimester worries. I had heard the heartbeat. The thoughts of possible miscarriage had subsided in my mind. Now this. Tracy had heard part of the conversation, and came over. I fell into his arms, and cried. He understood the gravity of the situation, and he just let me cry. How he kept it "all together", I will never know. I am grateful for his strength and being able to literally lean on him when I am not strong enough. I cried for 2 hours. TWO HOURS! I haven't cried that long since I was 12 (had a good reason then as well). I kept trying to stop, but then I would look up and see my kids - my crazy, perfect kids and the preciousness of it all, and the tears would come back again.
I had seen a documentary on Discovery Health about 4 years ago. It was before I was even pregnant with Hannah. It covered 3 women whose babies were diagnosed with Trisomy 18. One had decided to terminate the pregnancy. One had carried the baby full-term, only to have the baby die during delivery. And one, who was able to have a live birth, having the baby only live a few months. I knew what carrying a baby with T18 meant. After being able to compose myself, I decided that I needed more information. So I googled and googled and googled. I purposely didn't look at any pictures. I tried to get information through discussion boards and threads of women who were in my situation of the "unknown". It began to get much more depressing, as I truly realized how high my risks really were in comparison to most. Google is a blessing and a curse at the same time. I got so much information, trying to find comfort and only finding more fear.
T18 is a chromosomal defect of the 18th marker. When conception happens, a mutation occurs. Babies with this have severe birth defects. They can have heart defects, kidney problems, the esophagus sometime doesn't connect to the stomach, part of the intestinal tract can be outside the stomach, cysts on the brain, delayed growth, severe developmental delays, clenched hands, clubbed feet, strawberry shaped head, low-set ears, and a small jaw. Only about 50% of babies with this condition make it full-term. Of the 10% that live though the delivery, only 1% live longer than a few hours. Scary. Stuff.
I can honestly say I tried to look at the positive. 1 in 10 still isn't that bad. "90% is still an A", I kept trying to tell myself. But in the wee hours of the morning, when sleep obviously isn't going to happen, dark sad thoughts have tendency to break through the exhaustion. What if my baby is one of the 10 out of 100? How can I plan for a birth and a funeral at the same time? How am I going to explain that to my other children? How am I going to be able to handle this? And trust me, I spent a lot of time on my knees. If I wasn't on my knees there was always a prayer in my heart.
I had made the decision to call my parents and let them know. Even though we didn't have any answers, I was scared and I wanted them to know. They fasted and prayed for me, as well as many others, including my sweet little Aleana. After a sleepless night, I got up and robotically got the kids ready for school. Tracy was heading out the door for the week, and I was trying to get the kids to eat. Aleana told me she wasn't hungry (which is NEVER the case. She likes her breakfast.) Upon further prodding, she informed me that she was fasting for me and the baby. Tracy caught ear of this, and said she needed to be sure to start her fast with a prayer. She informed him that she knew that, which was why she had prayed the night before. Just when I thought I was done with the crying part, it started again. I was so touched that my little 9 year old had the faith and love to do that on her own. Simply inspiring.
Tracy had offered to stay home with me, but I told him I needed to stay busy, and that no matter if he were here or there, I would still have to deal with this. My visiting teachers, who I had cancelled an appointment with because I just couldn't handle visitors, brought me dinner Monday night and checked in on me. It was truly humbling that other people whether through a thoughtful prayer or an act of kindness were there for support. And because of that, and the fact that pregnant women aren't supposed to pull all-nighters, I slept better the next night.
When I awoke Tuesday morning, I felt completely different. There was no heartache. No heavy despair in the pit of my stomach. No forcing myself to get out of bed. In fact, I opened my eyes, stretched - thinking about what a good sleep I had, before I remembered the past few days. It wasn't even on my mind. I felt so calm. I had a distinct feeling that I was going to be okay. Not that the baby would be okay, but that no matter what happened...I. Am. Going. To. Be. Okay. Words cannot express the peace that has brought to me this past month. True unfaltering peace. And the thought of the power of prayer and what it can do is humbling. I had a lot crazy stuff happen in my life that was beyond my control. This situation isn't any different, except I have never felt the sweet relief of my burdens being lifted that much. It is a feeling I don't think I will ever forget.
I had my 1st of 2 level II ultrasounds on the following Thursday. They spent about an hour and a half studying the baby and taking measurements. He wasn't that cooperative, but they managed to get almost everything they needed. They looked for the soft-markers with the heart, brain, kidneys, stomach, limbs, and head shape. Everything looked normal. His growth was right on track. In fact, he was a few days ahead - which is a good sign. The perinatologist came in and was worried because we couldn't get a clear shot of the hands. Clenched fists are one of the more significant signs of T18. They tried of a few more minutes and finally got a clear shot. Hands look normal. I was so relieved. But then he then explained to me that just because they aren't seeing any soft markers doesn't rule out T18. There have been babies born with T18 that showed no symptoms. It is rare, but it does happen. That coupled with not being able to get clearer shots of the heart, Dr. Blea couldn't rule T18 out. Which meant we weren't out of the woods yet.
This was the shot of the hand they ended up getting (to make sure his hands weren't clenched). He's our little Rockstar!
The only way I could get a more definite answer was to get an amnio. I met with the genetic counselor and discussed my options. Going into the appointment, I had made my mind up that I was going to get the amnio. I wanted to know. I wanted to be prepared and know if we needed to monitor things more closely. But ultimately I decided not to. Not because I was confident that baby boy would be okay, but I was scared. Tracy wasn't there, and this was something I didn't want to do on my own. I asked if having another ultrasound down the road to compare this first one to would help. The doctor agreed noting that it would be a safer route, and we scheduled another appointment...a month down the road. He wanted the baby to be bigger to get better views of the heart. A whole month...sigh.
Update: We just had the 2nd level II ultrasound last week. And things couldn't have gone better. Baby boy is thriving. He is now a week and a half ahead of schedule (which is kind of normal for my babies at this point). He heart looks great, as well as everything else. This time when the perinatologist came in and took a quick look, he didn't even give me an amnio option. No hemming or hawing about statistics. He just looked at me and said, "Things look great. And I don't need to see you again. Not that I don't like you, but you can keep seeing your regular OB." What a relief! There is still a part of me that is worried, but I have gotten to a point to finally realize that what happens will happen.
This past month has been hard. But like most trials, I have come out a better person. My heart has been touched. I have learned some valuable lessons about support and not "going it alone". I have learned that prayer as simple as it is, is a powerful tool - and that the answers that come quietly are what is needed at the time, not necessarily what is wanted on our own timeline. I am very blessed. Again, I am grateful.
Now on to the ultrasound pics:
Head shot
Good Profile
It's a boy! I was showing Trent the pics, and asked him what he thought this was a picture of, and his reply was "It looks like a dinosaur flipper!" I explained what it really was...definitely not a dinosaur flipper :)
Flexing some muscle
This is what it looks like when he kicks me.
Peace out!
