Fancy Things.

Today we saw the doctor again.

When I say "the doctor," this time I mean the perinatologist located right here in Fort Collins. That's what I call "the fancy doctor." He has fancy machines, and fancy ultra sound techs, and he seems to know his way around birth defects. Only extra-fancy fetuses get to visit him. :)

So, Nora just keeps getting fancier.
I went in today feeling optimistic. Stressed. Well, terrified, as per usual. And, I'm either getting really used to feeling terrified, or I am getting better at dealing with all of this. I imagine that perhaps it is a little bit of both. Regardless, as the ultrasound tech measured all of Nora's parts I lay there with every muscle flexed as tight as can be, trying to see all of the things that seem "wrong." My heart rate was skyrocketing, but I was in fact breathing. So, that's good, huh?

When we finished all that, without any information on what they saw this time, we sat. Just waiting. I'm getting more patient, too. This time, we played games on Kevin's fancy new iPhone. When in fancy places, I guess it calls for doing fancy things. The only sign of my anxiety in waiting was my tapping toes on the tile floor. I think I even took some deep breaths and slowed my heart rate. Go, me!

Finally, the waiting stopped. But, that means the talking started. The cardiologist entered the room, and got down to business. The goal: find the aorta. Alas, Nora is trouble. She just won't lay right to show those doctors the part they need to see, not long enough to get a true answer. She moves endlessly, or on the reverse, lays still as can be, and in the wrong position. "She just isn't being helpful, is she? She never wants to cooperate for you, huh?" I offered.

"I hope that isn't a sign of things to come for you both," she said jokingly. I was furious at her at first. Is that her way of telling us something is wrong with her heart!?!?! No, no, no. I realized. She is making a joke about Nora's future behavior in life. Well, in that case, cardiologist lady, why don't you give me a hug? Because you seem to think our daughter will one day be here, and be able to give us hell. Thank goodness.

Long story short, and a very LONG ultra sound later, her heart might still be fine. But maybe not. Because they still can't see that aorta in the way they need, but can only get some quick shots of it, things look "suspicious" at times. Some shots look great. Some, some are not so clear. What this means? We could be looking at a potential coarctation of the aorta. What that means? A valve, of sorts, that is narrowed, I think on the aortic arch?, that would require heart surgery after birth. Other possibilities caused by this coarctation include a bicuspid aortic valve, which appears to be functioning fine at the moment, so would require little work, or if function becomes less than great, a balloon procedure of sorts, they called it.

Ooooooooooookkkkk. So that totally stinks. And I'm starting to feel deflated about that.

So, fancy doctor guy comes in. He says, "There is news."

"Lovely," I think. But really I think- NO! Just let me run away from you as fast as I can and never come back and it will all go away, right!?!

Oh, Wrong? Damn.

So, a new something has appeared on Ms. Nora's lung. "It's new. It's not been there. We aren't sure what it is and this ultrasound machine can't see what we need. We're going to need to a fetal MRI- and that can really only happen in Denver at Children's Hospital," he says.

Deflated some more. I'm for sure getting smaller.
But also, I'm a warrior at this point, and the clarifying questions start flowing. I am a rockstar at handling this news at this point, and I am ready to take charge, and do what needs to be done.

Though hesitant to say, I squeezed more information out of him, certain I needed to know what we're looking at. Because of the lack of knowledge they have at this point, he didn't seem psyched on saying- but he talked. And we listened.

There is a "cystic structure" of sorts on Nora's lung. My heart sank as I feared the worst: fetal hydrops. (DON'T GOOGLE FETAL HYDROPS. DON'T!  IT'S MY BIGGEST FEAR OF ALL, AND I REFUSE TO THINK ABOUT IT). Regardless, he didn't call it that. He called it a "cystic structure." It's 4mm x 4mm. It's not overwhelming in size, but it's new. So, it could be one of three potential things that he thinks at this point. One: a bit of tissue that isn't related to the lungs and will either remove itself or simply be there, not harming Nora in any way. Two: a c-cam? For sure don't if that is right at all. This would be a mass of sorts that isn't really dangerous, though could impact respiratory function. They would hesitate to remove this mass until absolutely necessary because, why do surgery on her lung if you don't have to? It sounded like this sort of thing is generally removed around ages 2-4ish in most cases. Three: a mass of sorts that has grown a valve to the heart and in doing so, requires pretty prompt surgery after delivery and greatly impacts respiratory function until removed.

All of these things I've presented give various options for delivery. We are tipping the scale a bit in the direction of a planned delivery at Children's Hospital with this newfound news they say.

Uggggggghhhhh.

So, we're getting ourselves a full length adventure at Children's Hospital in the next few weeks. There we will have a fetal MRI, echocardiogram again, ultrasound some more, and meet. We will meet lots of people and talk about the game plan.

Regardless of my deflation and moaning, this really is a good thing. Children's was going to be part of our life in the future no matter what, now we are just getting an earlier start, right? We'll get even fancier machines, we'll get even fancier doctors, we'll get far more information. Information is scary. But necessary. We'll get to me a geneticist, we'll have more cardiologists. We'll have fancier pictures. This all seems pretty fancy, if you ask me.

As far as delivering at Children's- bring it on! I am fully prepared and sort of thrilled with the idea. Fort Collins has a wonderful hospital with great staff, and my doctor(s) have given us great care. But there are sooooo many unknowns for this little girl. There are a billion things that we just don't know, but we do know a lot that she is at higher risk for. So, that being known, I'd like to be where the best care possible is immediate, on site, and awaiting her arrival. That sounds safe, right? Safety first, my friends! Not to mention, isn't Children's like one of the fanciest placest for care in the state, maybe even this side of the Mississippi or something? Well, that sounds fancy!

So, how are we feeling?
Only God knows.
I'm pretty sure we don't.

Except I know some things. I know I'm really, really tired. It's hard to be worried all the time. It's hard to go through emotional doctors appointments, and wait, and pray, and hope a lot. It's hard to talk about it, and also hard not to talk about it. It's just sort of hard sometimes. And, that's ok. No one ever said life would be easy. And that's ok with me. I just really am tired sometimes.

There are many people in my life that don't really know what is going on. They know I'm pregnant. But that's really it. Those I haven't seen in months, and aren't on the "news" email list, might not even know I'm pregnant. Sometimes I like it that way. I like people to rub my belly, feel Nora kick, ask how the nursery is coming. I like not having the, "how are you?" complete with a head tilt to the side as if to say I shouldn't be ok. I'm fine with the smile and happy pregnancy questions that don't also include a little rub of my hand or my shoulder. I don't always want the extra hugs and nosey questions from those that just should mind their own business.

There is part of me that wants to keep it that way. I want everyone to treat Kevin, me, and Nora just as normal as everyone else who is having their first baby. I want everyone to be excited Nora is coming, and be thrilled to squeeze her chubby cheeks and listen to her sweet baby coos. I want no one to be scared, uncertain about her, treat her different in any way. I want everyone to celebrate the crap out of my baby girl, and not because I tell them to because she has Turner's syndrome, but we're ok with it- I want them to just because that's what you do when you bring really awesome babies into this world.

But then, there is this other part of me that wants to shout to the world "We're having a baby. And she has Turner's syndrome. And we are pumped!! And she is a fighter. And a rockstar, and we love her so much despite the birth defects and abnormalities, and you should too! And we are so freaking proud of her already for beating all the odds up to this point. But in the mean time, could you all pray really, really hard and often that she is ok in there!?! She needs all the prayers. Pray that all of these hurdles that she has to leap stay simply as hurdles. And not road blocks. Please. And while you're at that, could you also just remember that she is a perfect little girl, and that we don't need your sympathy, and your hugs, and we don't need you to tell us that it is all ok, because right now it's just not. But we hope it is all going to be ok soon. Instead of putting your energy into us, could you put  it into her? Because we are ok- we are ok, if she is ok."

So, those are pretty different things. Maybe I'll come up with an answer on how to deal with this?

Part of me feels so proud of her being such a fighter I just have to shout it to the world and make everyone else so proud too! Part of me wants everyone to celebrate her "differences." The other part of me says it's just not my thing to shout to the world. Nora has Turner's Syndrome- I don't. And though I am exceedingly proud that she is so tough, it's her diagnosis to share with the world. I know it will be years before she can do anything about that. And perhaps I won't wait that long. But for now I refuse to be the reason that Nora is faced with feeling "different" because others all treat her differently, partially because her mom told everyone she knew all about her daughter that has Turner's. Maybe Nora doesn't want to be "the girl with Turner's." Maybe she does. But how is that my job to decide? How does one not allow their child to be defined by their diagnosis, and yet, not ashamed but rather proud of themselves? This, I've decided, is a delicate balance.

So. Maybe I'm over thinking this.
That's possible.

For now, all of you reading this know that Nora has Turner's so could you go ahead and be pumped for her. And also pray a billion times a day that all this scary prenatal stuff, really is just scary prenatal stuff that we'll get through and come out the other side with a delightful little lady!?

Thank you!