Today I woke up. That in itself was something I wasn't expecting. I woke up and I got out of bed, dressed my kids, fed them breakfast, sent the older one off to school. I functioned. All the while I wanted to run and hide. To pour myself back into the overwhelming darkness and clouds that have been weighing down my life for the past two weeks.
I'm 20 weeks pregnant.
Its our 3rd girl.
Most people would be ecstatic, but I can't be. I can't be because Feb 29th I was sent to a Maternal Fetal Specialist because of suspected Down's Syndrome. Over and over my midwife reassured me that she didn't see anything and the doctor was just "Covering his butt." But as my husband and I sat holding hands and laughing as he hoped he'd get a glimpse to tell us if it was a boy or girl, the tech saw more and more things. A thickened nuchal fold, dilated kidneys, a hole in the heart, shortened thigh bones, no nasal bone, and worst of all anomalies in the brain. We had just been reassured a few days before that it was nothing and that our baby was fine. But as the specialist came back she was sure it was something, chromosomal disorder, Down's, Trisomy, there were all theses words tossed out and before I had time to process I was being prepped for an amniocentesis. Which if you're already phobic of needles is horrifying.
Only my body wouldn't let the amnio happen, I started contracting and with my history of preterm labor they stopped. The specialist seemed disappointed and offered me a blood test instead. My emotions were numb, I was in shock, I didn't understand that after four years of trying how this could really be happening...the blood test was quick and easy but would take a few weeks to get back I was told. Not only that but they were recommending us for a Fetal MRI and a Fetal Heart echo, and they wanted them as soon as possible. To me it was my first clue that something was very wrong.
No one was giving us any real information though, what they saw, what they suspected, we were just in the dark, waiting. Our first MFS appointment was on a Monday, our echo and MRI was scheduled for Friday because Tuesday night I went into preterm labor and spent the next 24 hours in the hospital. I felt like I was spiraling out of control and no one was helping giving me some sort of clue. My husband and I talked, Down's Syndrome was the end of the world, it was something we would deal with and after finally contacting our genetics worker at Children's Hospital, she finally gave me at least a glimmer of information. They were looking at a slight Dandy Walker Varient and had started to rule out the other findings based on other things, but that Down's Syndrome was still our most likely issue.
And Down's Syndrome became the easy way for us. It was something we had friends with, when knew friends who's children had Down's, it was our light of hope. I wasn't sleeping, just this vague in between consciousness for days and I could feel myself failing my family. My two older girls didn't know anything was wrong except that Mommy was going to the doctor a lot to check on the baby. They were the comfort I so desperately needed. My husband and I would just hold each other and cry at night. There's nothing worse than the wait.
Monday came, a whole week after the first appointment, and we had been grasping at straws that maybe the findings were wrong, maybe the MRI would show it was just a shadow, maybe a different doctor would see something else, cloud and rainbows we were searching for anything. I had a short check up to make sure the preterm labor had calmed, I'd even told my husband not to worry about it because it wasn't going to be anything more than in and out.
But it wasn't
See my OB was just browsing through and he off the cuff mentioned "Your amnio looks fine, but the baby seems to have Jouberts Syndrome. I don't know what it is but you should google it."
I don't know why I listened.
I don't know why he didn't wait till the meeting he knew we were having on Wednesday.
So I went home and started googling,
Dr. Google was great at telling me that my baby's brain wasn't formed right. That it was never going to function properly. Dr. Google showed me symptoms that ranged from mild to profound. That my baby would never walk, talk, breathe, grow. That there was something that was not fixable wrong.
That day was a dark bad day. I thought about terminating for medical reasons, because what mother wants to see the child they love so much suffer. Monday I felt myself shutting down, finally giving into the realization that something was truly wrong with the baby. I cried. I cried so hard I thought I might die. I felt the whole world begin to suffocate me and my husband was there to pull me out. That man is a pillar and I am so lucky that I have someone like him to keep me together.
We talked and he still grasped at the thought that something could just be suspected. I wanted to believe him, but I knew.
March 9th. It was the day we'd been needing and dreading and I almost ran away. A few hours before our appointment Sarah (the genetic counselor) called and started talking asking what we had been told and if we had results back from the blood work, we didn't, When I mentioned that we'd been told about Joubert Syndrome she sighed and told me that yes, we should prepare ourselves to hear about it. I called my husband and he just seemed angry and I couldn't blame him. We'd been tossed around with several possible diagnosis and never found out more than a sliver of information. I was mentally and physically exhausted.
The whole drive my stomach was in knots and I hadn't felt the baby move in almost 24 hours. There's no feeling like that, that you're walking into a Lion's Den and you can't stop. Hubby was still optimistic but for me I already knew, they don't put you through things like this for good news. You don't have 5 hour meetings for a "oh hey we didn't see anything, sorry to put you through this." But his smile, his hand squeezing mine, it was enough to bring me to put one foot in front of the other and keep going.
Sequestered in a small "nesting room." we waited. The vitals were good, things were supposed to be relaxed, we watched a hockey game because sports distract us. But in walked Sarah, my lifeline to the doctors who was the first person to tell me what was going on, and she said it, the baby seems to have Jouberts Syndrome.
The rest of the day was a blur, my husband tears hurt me and my own tears seemed to be stuck in my throat as we went through sitting in a conference room filled to the brim with doctors looking at us with sad eyes explaining that our baby wasn't "normal" that there were multiple problems and though some of them were fixable that the brain was not. Because of the findings we were warned that the baby our girl, would be on the moderate to severe end of things, that she many never talk, walk, sit up. That because of the severity she might not make it through the pregnancy if not the first year. We were bombarded with information and possibilities and the worst of it all was there were no guarentees except that the baby was clearly not okay.
I don't remember much of last night, we told our parents, we cried and cried, and cried some more. I feel like I've shut down.
So today I woke up. The garbage man came. The girls smiled and laughed. And the world kept turning. Today I woke up someone different than I was yesterday, and I'm working to accept that, but I got out of bed. I didn't give in.
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