Elinor

Words I can find to describe the hardest f*****g thing in my life.

This is really happening. I am losing my baby. Who, as we speak, is dancing around sweetly in my belly. I hope to whatever the powers that be that she isn't able to somehow feel what I am feeling. No sweet child should ever feel pain. EVER. 

 This has been the most difficult week of my entire life. This is a long account of what my life has been like since Monday when our world came tumbling down. This is more for me than anyone else.

My husband and I both were feeling a little more anxious than excited on Monday when we went in for our 20wk ultrasound appointment. In the back of my mind, I knew there is always a risk. Is the baby healthy? Then and only then can we start to get excited about knowing the gender of our little one. Well, the ultrasound started off great. We couldn't stop smiling watching our baby dance across the screen. Two arms connected to hands, each with five fingers. Two legs connected to feet with five tiny toes on each little one. Heartbeat like a dream, cutest profile, mouth opening and closing. As our ultrasound tech took picture after picture crossing each one off her list she came to the last picture. She was under the impression that baby had to move away from the uterine wall a bit to be able to successfully capture the bottom part of the spine, she had already captured the top. She decided to go "run some numbers" and then come back to check to see if the baby turned. She came back in to snap a photo, mumbling that she had already looked at this "boring" part but had forgotten to capture it to show the radiologist. Okay. No big deal. After finding out our little one is a girl, my husband and I laughed and joked about not having to decide on any more names because we had only agreed on a baby girls' name, Elinor Louise Sumi, it was a boys name we couldn't agree on. 

  The smiles quickly dropped off our faces when our ultrasound tech came in again this time with another lady, the radiologist, tissues in hand. My heart dropped, I knew this was bad. Their faces were so somber, they didn't say much, they didn't have to. Our ability to comprehend this interaction was difficult, to say the least. 

The radiologist began by saying that there is an abnormality(this can't be easy news for her to give, part of me felt for her right then, I wanted to hug her) My eyes widened as to invite her to proceed, to tell us more, tell us everything. She then said the lower spine had been invisible because it isn't covered by skin, meaning there is a tiny opening at the bottom of our baby girls spine. After this was said I had to snap out of it and force myself to say something, to ask them something, anything, even though all I wanted to do was leave. I asked what it meant, and if she had seen this before. She said in 8 years of doing ultrasounds this is only the second time she'd seen anything like this. I asked her what it could mean, help me in some way gauge the seriousness of this, why in the hell you have tissues. Why are we crying? She looked perfect to me. 

  There really wasn't anything else they could say. They aren't doctors after all. She told us we would be contacted ASAP by our midwife and she would advise us as to what we are to do next. UGH. My husband and I walk out silently and drive home almost in complete silence, knowing that our family and friends have all been anticipating this joyous appointment almost as much as we have. They would surely be standing eagerly by to hear the good news and what the gender is so they can start showering us with gifts for when baby arrives. UGH. Between the time we got this terrifying news to when we finally got the call from our midwife seemed like YEARS. She didn't have much else to tell us other than it looks like our baby has Spina Bifida and that she had forwarded the results of the ultrasound to me via e-mail. She also warned that it would seem a bit overwhelming, it being mainly in foreign DR lingo and all. She also said to stand by for a call from the Fetal Medicine Clinic to schedule our next appointment and what that would entail. More waiting. 

I then started researching everything written in that e-mail:

"The following strictures or abnormal:

Cranium: Lemon shape skull, banana-shaped compressed posterior fossa

with loss of cisterna magna. No cavum septum pellucidum is seen

which may represent agenesis or dysgenesis of the corpus callosum.

Dangling choroid plexus with ventricle enlarged 1 cm."

Copying and pasting words and looking them up in the medical dictionary. I read all night until finally crying myself to sleep in the early hours of the morning. Trying to keep an open mind and hope alive that this is all a big misunderstanding, that everything is fine and they had made a mistake. 

Halfway through the next day I finally got a call from fetal medicine saying they got my request and moved other appointments around to be able to get me in as soon as Thursday. It was only Tuesday. More waiting. 

 I lit candles and smudged my whole house to rid any gloming negative energies and surrounded our space with love and light. Thursday was one on the longest most emotionally draining days of my life. We did another ultrasound. This time the machine was way more high tech. the Lady was far more thorough than the first time and again said the same thing. A neural tube malformation in the sacral area of the spine, the sinking of the cerebellum and dilation of ventricles in the brain. Again their faces speaking volumes as to what this means for our baby. We could have just left it at that, my husband and I had days to discuss our "line in the sand". What would be the last straw before making the decision to terminate the pregnancy. The doctors had already said all of my red flag words, "Chiari 2 malformation" being one of them. We would be able to carry on if our babies brain seemed okay. But that just wasn't the case. Moving forward we met with a genetic counselor where we discussed different reasons why happened to our baby. We decided to do an Amniocentesis, not only to find out more about why this may have happened but for information for our future and trying to conceive. After this, we had also shown interest in a fetal MRI, thinking that that might be able to show us a little bit more detail about the brain and severity of the lesion on the spine. The nurse at the office said she would call Children's Hospital and try to get me in ASAP. More waiting. Now I've been sitting at home centering myself and waiting, going over and over in my head what I am prepared to do to make sure that this baby doesn't suffer. I received a call today scheduling a fetal MRI for next Thursday. That is just shy of a week. As I sit here typing this my baby is kicking, each kick makes my heart break more. It is becoming clear to me that my husband and I have already made our decision. Another test isn't going to change that. This baby is going to be born into a world of painful surgeries and possible death following nothing but pain, confusion, possible brain shunting, and surgeries. I can't allow that to happen. If I can take on the pain now so our baby doesn't have to then that is my only option. I don't want to have to wait another week only to waste time and resources just to find out what we already know in our bones. I have emailed my doctor and proposed canceling the fetal MRI and to expedite the procedure to terminate my pregnancy. So that we may start our journey to healing, grieving. So that we can put our little girl to sleep soundly before she has a chance to feel any pain. That is what I know in my heart of hearts is the right thing. So why am I writing this? To vent, to express my scattered thoughts in this fucked up time. This is my first time being pregnant. My husband and I have been over the moon about starting a family. This is the hardest thing either of us has ever gone through in our young lives. I know I will be a mother again someday. Although I'm not religious I am very spiritual in my own way. I believe that my little girl will always be with me and her soul will find its way into my heart and wait for the right time to join us as a happy healthy baby.