Playful Rooted

The story continues.

Our first round of genetic testing came back NEGATIVE for everything the doctor thought this could be. Negative. Where did that leave us? With an insane amount of hope. We must have just been overreacting before. All the tears we cried, all the heartache, it was all just a false alarm.

And then.

Since the ultrasound and the genetic test had pretty contradictory results, we went back to the maternal-fetal medicine specialist for an amniocentesis. But before that procedure, we had to meet with a genetic counselor. And her opinion put us right back in the midst of grief. Despite the negative genetic test, she still thinks that this baby is not okay. Maybe it was a false negative on the test. (There’s a 0.8% chance of getting a false negative. If anyone would fall into that statistic, it would be me.) Maybe it’s a different type of chromosomal disorder that that particular test doesn’t check for. Maybe it’s a DNA mutation/deletion/duplication. Maybe it’s an even rarer genetic disease. But she and the maternal-fetal specialist agree: the chances that ALL these abnormalities, including defects in three separate organ systems (heart, brain, and kidneys), could be a coincidence? Very, very small. Granted, all of the possibilities right now are very unlikely; the most likely is that the genetic test result we got was a false negative, and as mentioned, that’s a 0.8% chance. This is where we are. We know nothing. Nothing makes sense. But the prognosis for this baby is very bleak. It’s agony.

The amniocentesis hurt. It’s a very big needle right through the stomach and through the uterine wall, where it collects the amniotic fluid that should give us more reliable results on our next round of genetic testing. (But again, these tests are only 99.5% accurate, and it might seem silly, but that 0.5% worries me.)

And much, much worse than the pain of the amniocentesis was watching our child on the screen in front of us. They do an ultrasound at the same time to make sure the giant needle doesn’t hurt the baby. And there she was. Flipping around, putting her hands up to her face, doing all the normal, adorable things that healthy little babies do in the womb. It’s agonizing to see. It’s agonizing to feel. It feels completely normal. Just like her brothers. And right now, for the most part, she is normal. She has a heart defect, but it’s pumping blood just fine. Her umbilical cord isn’t formed right, but it seems to be doing the trick. She doesn’t need her brain to work perfectly at the moment. Her kidneys aren’t on duty yet. The gut-wrenching grief comes from knowing that this will not always be the case. In the womb, she’s safe and cozy and protected. Outside is a different story.

When we drove up to the hospital last week, Ben parked in the “Mothers-To-Be” spot at the front of the parking lot. It felt obscene. I am in no-man’s land. Biologically, my body is pregnant. This baby is still getting bigger all the time. I still have all the aches and pains and hunger of being 22 weeks along. I look pregnant. Because I am. But psychologically, I’m checked out. I’m numb. I don’t feel like a “mother-to-be” since I will likely never mother this baby outside of the womb. I tried to work out the other day, but I couldn’t do a prenatal workout because I don’t feel prenatal. Prenatal means you’ll soon be bringing a baby home. I’m pre….pre-something. Pre-trauma? But not prenatal. But I couldn’t do a regular workout either because, physically, my body is pregnant and can’t do the same movements a non-pregnant person can do. So I sat on the floor and looked at the wall, and I think I might have cried, but my body is completely out of tears and hope and energy. It’s emptiness. I am emptiness incarnate and yet full all at once.

The amniocentesis results won’t come back for two weeks. Fourteen days. That’s fourteen days of baby kicks and flutters and my desperately trying to hold on and enjoy the feeling of the last little life that will ever live inside me while at the same time fighting to remember the reality. Remember that, though this feels like a completely normal pregnancy, it’s not.

Someone recently told me (long before this all happened; while it was undoubtedly naive, it wasn’t malicious) that she didn’t feel the need to get any ultrasounds with her pregnancies because she knew that she would feel it if something were wrong. She would just know. You know? ……..Uhh, no. If you had asked me a few weeks ago if my baby had major abnormalities, if this pregnancy were somehow threatened, I would have said, “of course not.” Of course not! I didn’t feel a thing. Not a thing except a normal, healthy, perfect gestation. That’s all this feels like. How quickly things can change. How suddenly your life can transform into what you hope and pray is a bad dream.

And yet, it’s real. This couldn’t possibly happen to me, but it is happening to me. And soon, no matter what happens, no matter how this turns out, my life will change irrevocably. But all I can do right now is wait.

And wait.

And wait.