Friday, January 23, 2009

ONE

This post will be a little different, it's a running journal of the week we've had here and I debated for a while as to whether or not I would even publish it. I've come to the conclusion that it is a piece of our family history now and should not be held inside or kept separate from the whole.

Tuesday January 20, 2009
One can be a very powerful number.
One appointment at One o'clock.
One ultrasound.
One baby.
One perinatologist.
One question ("How old are you?)
and in that One second I knew something was wrong.
One marker for Down Syndrome
One nasal bone that doesn't look quite right.
One moment for everything to stop moving, for my breathe to catch, for the tears to fall.
One can be a very powerful number indeed.

Wednesday January 21, 2009
Today I had an amnio done and I am feeling, well, just lost. The past 24 hours have been a blur and I feel like I am coming unglued. Like my entire world is just unraveling, and I don't even know where to begin. I have a million questions and worst case scenarios running thru my head and everything is happening so fast I can't seem to get a handle on it or slow down.

We had our big ultrasound yesterday and when the dr. (not my ob, a peri. who works in the Maternal Fetal Medicine department) came in I just had this sinking feeling in the pit of my stomach. When she asked me how old I was, I just knew and I practically started crying right then and there. The baby looks beautiful, all the organs are fully formed, she says, but....

Apparently they couldn't find a visible nasal bone and this is a marker for Down Syndrome, a "soft marker" she explained, and since my blood screen results were so good (1:35,000 chance for Downs) one soft marker alone is not enough for a diagnosis. I declined the amnio that she offered me and went home with my thoughts in a complete haze. I 'researched' nasal bone online and could only find terrifying articles, all of which said that an absent nasal bone is nearly a guarantee for Downs. I wept in the arms of my husband and played out a million different scenarios in my head. I could feel Junebug flipping about as I drifted off to sleep.

Today we met with a genetics counselor who said that we were still at a less than 1% chance, but I just couldn't get all those medical journals out of my head, and I couldn't bear the thought of spending the next 20 weeks wondering. So we went ahead with the amnio. I still cannot believe it, that this is happening, and it is a very scary place to be when you don't even know how you truly feel. I feel completely powerless and alone. Brendan has been wonderful, he is a phenomenal partner to have, but I still feel like I am about to drown from the weight of these emotions.

I kept saying to myself thru this entire pregnancy, "Wow, twins will be a tough act to follow, how do you TOP that?". Well, I just may have my answer. And I feel so stupid, you know that twins never even crossed my mind when I got pregnant back in 2007 and then BAM twins. Well, guess what? Having a Downs baby never crossed my mind either, we declined all the early testing since I am so young. We kept telling ourselves "One baby will be so easy after having twins" and "we're only adding on one extra year" since the baby will graduate one year after the twins. I feel like such an idiot, and I feel like I did something wrong, and I also don't have any idea about how I really feel at all.

Thursday January 22, 2009
Before this ultrasound my quad screen blood work listed me as having a 1;35,000 chance of having a baby with Downs. One in 35 THOUSAND chance. Yesterday the genetics counselor said that our new number is more like 1:100. I just narrowed my chance by 34,900. That can't be good. What do these numbers mean? There is only one number that I am interested in......

Of 100 fetuses seen to be missing their nasal bones during anatomy ultrasounds, how many will be born with Down Syndrome?

And no one could tell me that, not even the perinatalogist who described himself as "cocky, after 15 years of experience". Not even him. And this is in fact the number one question I have. Blood work can be wrong 20-25% of the time, so that great number we heard could in fact be a total mistake. Ultrasound screening can be wrong about 10% of the time, so that missing nasal bone could in fact be present and just hard to see from a certain angle. The amnio procedure is the only way to know 100%.

After declining it initially, I was in a state of shock, I changed my mind and called MFM first thing Wednesday morning. She said I could have an appointment in one week. ONE WEEK! And it generally takes a week just to get the final results back. I calmly explained that one week was simply out of the question and that I would be willing to make it work whenever they could squeeze us in. Luckily she called back within minutes saying that there was an opening in one hour. We didn't have a babysitter for the twins, but I was willing to go it alone, intense needle phobia and all, if need be. Again, as luck would have it, Cass was able to come over to watch the babies so that Brendan could come along.

They have to tell you all the risks involved with the procedure, the worst of which are miscarriage or pre-term labor. This is a terrible decision to have to make, but I knew I would do it, I couldn't bear the thought of spending the next 20 weeks with my stomach in knots and my mind traveling down every road labeled "worst case scenario". Brendan held my hands tightly and I looked off to the side meditating, willing my legs to stop shaking, searching for a focal point staring blankly off into nothingness.

You don't know how you will react to something like this, at least I didn't. I declined all the early screening, assured by Dr. Chambers that my age didn't put me into a high risk category. I have always declined the early screening, with all of my children, why start this time around? I'm only 29. You just never know how you will react when it is YOU that it is happening to. This may sound unexpected and a tad harsh, but the second I heard Down Syndrome I felt the greatest amount of devastation possible and truly couldn't imagine keeping the baby. Isn't that about the worst thing that can ever go through a mother's mind? The worst thing that she could ever allow her heart to feel? How can I feel that way about my own child? A child nestled deep within my belly, a child I am nurturing even as we speak? I can't stop spinning around with this, desperate to land on solid ground, desperate to find my center.

Friday January 23, 2009
Today is a waiting game. Waiting for balance and clarity. Waiting for a break. Waiting for a single moment to release me from these fears. Waiting for an answer. Waiting for time to stop standing still. Waiting to breathe again. Just waiting.

We had an appointment with Dr. Chambers at 8:15am. I was calm and told myself that whatever happened I wouldn't cry, he's reassured me through enough tears already, today I was resigned to be strong and silent if need be. I even wore mascara as if to prove something to somebody. I put on dangly earrings and lip gloss. These are the mind numbing steps one takes when caught in a waiting game. I practiced many shades of aloofness, put on my casual face and tried pretending it was real.
I also began crying almost as soon as Dr. Chambers entered the room. I can never hide myself from him. Perhaps I trust him a little too much.

This morning was the first time that I have even talked with him about this, about the chance of our baby having Down Syndrome. I phoned him on Tuesday but wasn't aggressive enough about what I needed and couldn't get through. So when we were able to sit down with him and talk face to face it actually cleared up some of the fog I have been stumbling around in. Did he have any definite answers? No. Could he tell me what I ultimately need to hear? Of course not. But he could look me in the eye and give me his opinion and speak from his years of experience, and I could listen to him and find comfort in a familiar voice of the person I have entrusted the care of my babies to for many years, and find a sliver of comfort in what he had to offer. It makes the world of difference when you are speaking to someone you know, to someone you trust.

So far the faces of these specialist have been the faces of strangers.
Their voices have all sounded the same.

Now we are waiting and I am afraid. Afraid that I could potentially lose the child I have already come to love so deeply. Afraid that the strain of a special needs child will be a weight our family cannot support. Afraid that I will mourn for too long. Afraid that guilt will consume my spirit. Afraid that I simply don't have the strength of character, that my heart is simply too small. Afraid of weakness. But most of all I am afraid of the unknown, for I know that I will continue to chase myself around in this maze of fear, down as many dead end roads as I can possibly find, until I know for sure what it is that I really need to be afraid of.

Friday January 23, 2009 3:07pm
One
One baby
One ultrasound
One marker
One in a hundred
One phone call
ONE PHONE CALL

Our FISH results, the early results came back and are indicating that our baby has a standard set of chromosomes. 23 equal pairs. TWENTY THREE EQUAL PAIRS. Have you ever been more in love with the number 23 in all of your life? I am at a loss for words right now, a complete and utter loss. I am so drained, just exhausted, and I don't know whether to laugh or cry out loud. We will get the final results by this coming Thursday, and the FISH results are only 99% accurate so here we are back at number one. One percent chance that the results are wrong, but I'm about ready to leave One behind us. I'm moving on down the road, hand in hand with 99. I'll take it for now, I'll take it. 

After all of this, you'd think I would have more to say, but this entire process has been so intense and emotional that I think I may just need a piece of time to float away with my thoughts and try to renew my spirit and my energy.

Tuesday night as I cried and protested, Brendan was very calm. Calm to point of being almost annoying. I turned on him, demanding to know how and why he could be so smooth in our moment of crisis. "Don't you love our baby!?!" I asked in a terrible accusatory way.

"Oh, Samantha, of course I love our baby. The reason I can feel so calm about all of this is BECAUSE OF THAT LOVE. I know that regardless of what happens we can get through this because we love our child".

I need to leave off here, as I can feel a good cry coming on. I know that I already posted this, but it's been buried by all of the mindless importing I did today and I think that since this post is all about June8ug then she should have another turn in the spotlight. She's my moonbeam and she always will be no matter what.

video

The Sweetest Gift
"Quietly while you were asleep 
The moon and I were talking
I asked that she'd always keep you protected
She promised you her light
That you so gracefully carried
You bring your light and shine like morning.
And then the wind pulls the clouds across the moon
Your light fills the darkest room
And I can see the miracle that keeps us from falling
She promised all the sweetest gifts
That only the heavens could bestow
You bring your light and shine like morning"
~Sade

*Quick clarification, we still did not find out the sex of  June8ug. As in the past, we will wait for a proper introduction at the time of birth. I've just never been one for calling the baby "it".*

2 comments:

:pG said...

You've got love and support. You have the world. You are amazing, Sammy. Can't wait to see where the journey takes you. Where would I be if a certain little girl hadn't taught me how to ride my bike while our mommies were in yet another meeting?

Love, Grace

Amy said...

Im so glad that the numbers are looking good for you. Try to stay calm, I know thats hard, our initial ultrasound with this baby showed that our baby might have a cleft lip, both the tech and my doctor thought they saw it. Besides a cleft being hard on a child its also a soft marker for all sorts of chromosonal stuff, anyway, long story short we went for a level 2 ultrasound and were able to get a better view and they think the lip looks great and didnt see a cleft at all. Sometimes those ultrasound machines just dont see everything right. I mean if they can misdiagnose boys as girls etc Id assume theres a chance to not see a nasal bone thats there. I just decline all the blood tests because like Brendan said, its your baby and no matter what youll love it. I cant stand to worry! But you are still young and a 1% chance is nothing! Im sure he/she is just fine in there! I will keep you in my prayers anyway though, just to be on the safe side :)