Beau pointed out that I haven't been blogging much these past few weeks. It's because I've been preoccupied with a test I was given. A challenging test, where I could not study and there wasn't a pass/fail option. This test turned out to be important.
A few weeks ago, against my better judgement, decided to go forward with the standard genetic testing. I had opted out of this with our daughter because the results would not have impacted our course and I lived in a happy bubble, where nothing bad happens to babies. She was the pillar of perfection, gaining gold stars at every turn until she died. This time after speaking with a few doctors and being assured it would soothe my anxieties gave the blood necessary for the screen.
"Your test came back positive for Down Syndrome." I went in to shock. "What does that mean?" I asked the unfamiliar nurse on the other end of the phone. "Your test came back with high risk for Trisomy 21, expect a call from the specialist to schedule a follow up, level 2 ultrasound, try not to worry".
I got off the phone, called Beau at work and relayed the message. He had so many questions I did not have answers for and I began to cry. Cry out of fear. Squeak's sick I wailed. Squeaks going to die too, I thought. That is the real fear all child loss families experience. Beau expressed relief in hearing the news. We can handle that, Squeak is alive. The last phone call he received at work about our children was me screaming into the phone Piper had died.
Beau convinced me to call our home base OBGYN where I received some clarification. Given my age, I screened (not tested, that is a different diagnostic criteria) higher risk. My risk is 1:218 or statistically speaking .5% chance and a 99.5% chance of no chromsomal abnormalities. My risk given my age and genetic make up off the street is 1:560. They explained the MFM (maternal fetal medical) specialist would perform a level 2 ultrasound and look for soft markers or anatomical differences in Squeak that may support a diagnosis. It will take a week or two to obtain an appointment.
Nope, a solid no. I became hysterical. I cannot handle the time, I need to be seen, I panicked. I am not special but I know that I couldn't make it. They agreed to see me the next day only after I declared I would sleep in their office.
Then I had to leave work because I had a nervous breakdown. I have already been the statistic, worse than 1:218, I've been the 1:2,000. I couldn't cope.
This may be an important time to clarify because I know many people have babies with exceptionalities. Ones that you can see and others you cannot. I work with and love on them everyday. I made a career out of being around babies who need extra care and choosing to grow a child does not garuntee perfection. When I heard, Down Syndrome I heart heart defects, sick, hospitals etc. I cried for MY future not Squeaks. MY future would no longer fit in a tidy box it will be filled with doctors and therapists. I was being selfish. Squeak would only be loved.
The next day we met with a genetic counselor who was extremely kind but did absolutely nothing to calm my nerves. Next we had a level 2 ultrasound. Every inch of Squeak was examined. I relaxed slightly when I saw the beautiful heart, all four chambers, ticking away. Beau held my hand as the tight lipped tech looked Squeak over. She then excused herself and when she returned she brought the big guns. The head of the MFM unit. He was the same physician who spoke with us after Piper died. Hop on the table he said. I told him I was going to faint. He shrugged and said he wanted to take a look. He focused over Squeaks heart, I felt Beau stiffen at my side, looks good. Except squeaks small or more specifically baby's legs are short, which is seen in babies with DS and babies without. Back to the genetic counselor, where we were referred for a highly specialized (and costly) blood test that examines fetal DNA. NIPT. It takes about two weeks. I left in a daze but I saw my darling baby and the heart was beating. I held to that.
The following day I saw my OBGYN. I immediately began to cry. What he said next to me was so important. You are not crazy. What happened to Piper (yes he knows her name) would make anyone's anxiety worse. He explained in detail what a quad screening is and how it works. He printed out my report and reviewed it line by line. Ultrasounds at this point are not growth scans they are anatomy scans and the anatomy appears normal. Squeak may in fact be short (like mom and dad).
NIPT came back today. Negative. Baby number two is healthy and a little short. Squeak kicks about in my belly as I write, saying who ya calling short.
The way information is explained can be very important to a mother. I wanted to gather all of my thoughts before sharing this blog because life served me up a big old platter. Remember way back at the top of this rant I said this test was important.
I obsessively googled everything there was to know about quad screens and ultrasounds until I actually made myself sick. I over indulged my anxiety inducing behaviors. I suffered the most but then I pulled everyone down with the sinking ship, most importantly my husband.
Be still and know.
I should have have trusted my heart. I never wanted to do those tests because I love Squeak no matter the genetic make up. I should have trusted my motherly instinct and stayed true to my course. If she happens to come out with an extra chromosome then so be it. That will be our path. I had no way of knowing I'd be navigating this path as a mother whose first baby died. Here's another sidebar. Those tests are invaluable for mothers whose babies are diagnosed prenatally with ANYTHING. My anxiety; however, is not equipt for them.
I'd better shape up. I'd better start pouring all that joy I talk about right back in to myself or the next few months will be even more difficult.
That was scary. The unknown is scary. This pregnancy is scary. Motherhood is scary. My mother constantly assures me the worrying never ceases. I'm allowed to be scared but I'd better balance it out or I'm going to ruin this precious time I have with Squeaks. My family has gently reminded me that positivity is a choice.
Lastly, I want this story heard and shared. I heard over and over I know people who that happened to. My friend had the same thing. I want to be that friend. I want to hold up my life and say see you can survive scary things. You can breathe, live and have peace.
Today I am thankful. I am thankful for Piper and Squeak. My husband and my tribe. I am thankful that I am healthy, happy and well loved.
If you've made it this far then you must love me. Lots of words and lots of feelings (probably loads of typos that Beau will call me about later).
Reat easy, Piper Kai.
Piper Kai Bennett
I will scream, sing and share her story may it be short. Our only child was born still at 36 weeks secondary to an umbilical cord accident. This is our journey about choosing life rather than existence.