Adventures at Children's

We had our Children's Hospital adventure yesterday.

It was a very long and exhausting day- but adventure it was. We saw radiology, cardiology, the maternal and fetal health center and met what felt like a billion people. 

To be perfectly honest, shit got real. 

There is nothing that can remind you just how fragile life is like seeing young children with cancer roaming the hallways and children in wagons and toy 4-wheelers smiling and waving while attached to IV's and pain medication. Children's hospital is a magical place. Despite all of the scary things that happen there, it is so smiley, and colorful and happy. 

Turns out, we've got some scary things of our own coming up. 

We started the day in radiology with a fetal MRI. MRI's are less than enjoyable, and they needed Nora to be still in order to get the images. How do they do that? Not let mom eat breakfast. For those of you that know me, not eating breakfast is like a death sentence- not for me, but for everyone around me. Hardly a big deal in the scheme of things, but I am a very hungry person upon waking up, so fasting ruins my day. Don't worry though, I got to pick a movie while getting the MRI, Frozen it was. And though it felt like Nora was dancing the whole time, they managed to get her pictures finished before I even got to see Elsa's ice castle, or meet the giant man with a summer blowout! They were speedy, despite Nora's "jumping and jiving." 

Then, Kevin fed me snacks and Panera, and I was happy again. 

Off to cardiology we went, where we had an echocardiogram with the same cardiologist we've met in Fort Collins multiple times. Surprise! Nora was in the right position right away! They saw her aorta perfectly. So, that mostly just quit delaying what she was suspecting all along. It's not looking as perfect as one might hope. And surprise, surprise, my blood pressure is a wee bit high. 

Then, off to the ultrasound. I was most scared of this. They weren't just looking at her lungs or at her heart, things we've known had some issues. They were looking at her whole body. Every nook and cranny. That always scares me. I'm scared they will find more things that are wrong. And I'm afraid more things just can't go wrong. Upon viewing the ultrasound pictures this doctor told us that he honestly can't really see much of anything of concern with her lungs- from ultrasound. But, don't worry, that MRI does a thorough search, so things aren't getting missed. 

All day we looked at all the things I hate knowing. It's all the things that make life hard for Nora. But, just as teachers do, they always included a positive comment or two to keep our spirits up. I can spot it from a mile away, the positive remark to remind us that not all hope is lost. I do it all the time- "Joey is a wonderful boy. He is very social and has made great friends, he is such a hard worker....however, [insert statement that will make mom's face frown]...." The good news is, as a teacher I never start with a lie. I never tell parents something that isn't true- I just don't want them to forget all the great things about their child, because a problem doesn't mean a disaster. I'll assume that's what doctors mean when they make these comments. I heard things like, "Your placenta looks good!" "You're both very healthy." "Oh, look at that image- beautiful!" "Despite these masses in her lungs, the rest of her lung looks quite good for a baby with cysts!" "Structurally, she is sound," "The rest of her abdomen looks great!" and my personal favorite, "You've got a party girl in there!"

Finally, we were set to meet. Not surprisingly, that meeting was delayed. We never moan when this happens, even though waiting is something we seem to do a lot of nowaways. We take it is a blessing. Things get delayed because they are giving families their undivided attention and time. We want that, too. So, if we must wait our turn to have that diligent care, so be it. We sat in the waiting room. I took a much needed nap, then we watched Friends. Perfect. 

In the meeting we had a whole team of specialists: Cardiologist, nurse of sorts (sorry, can't remember her exact title), neonatologist, geneticist, genetic counselor, two pediatric surgeons, a fetal care doctor (also, can't remember his fancy title- he compared himself to the perinatologist we see in Fort Collins, so a fancy doctor), and us. They all had things to say. And, they systematically went through each image of Nora and explained the good, the bad, and the scary. I asked questions in between, and they were patient, helpful, kind, and light-hearted. 

What they found:

-Nora's heart is looking pretty textbook in terms of potential for a coarctation (narrowing) of the aorta after birth. This is something that forms after the PDA valve(I think it is called a valve?) disappears after baby is no longer in utero. The coarctation occurs right at the junction of these two valves and requires surgery to fix. She has evidence coming from the left ventricle, the large space shown between two valves, and the small size of the aorta right now.  Turns out, it's more like 50% of Turner's babies have something like this. In utero, she is more than fine and her heart will keep beating as the aorta isn't really in charge right now, that PDA valve is. I'm learning so much about the anatomy of the fetal and human body I never knew. 

-Nora does indeed have masses on not just one lung- but two. They look enormous to me, but when I questioned them about the concerning size they commented that they are actually very small. The big giant bummer here? Not something that is a "symptom" of Turner's. Too bad babies with abnormalities in general are at higher risk for defects at all. They described this as simply, "Nora showing us her very unique self." Positive spin. Nice. They can't tell what it truly is, the images, though clear as day, don't show us an answer. It is either c-cam(s) which are cysts that need to be removed, and they may be harmful or not. Or something else that ends in emphysema (sorry, it was a long word, we'll get all of this information in writing soon). This is often something that just needs to be watched and if it impacts her respiratory function it would need to be removed as well. Again, in utero, she is ok. The lungs don't breathe air right now, so that can't stop her kicking either. If they were to grow in size, it's possible that it will throw off the structure in her body, and would cut of function to other things. If that happens, trouble. Let's keep high spirits. 

-Nora has edema in her feet. This is swelling. It's common in Turner's. It sometimes goes away, sometimes doesn't. It's cute in a baby with chubby little toes- trying to fit those bad boys into heels one day might not be so fun however- she should take that as a win, really- no heels? Brilliant!

-Nora is a little peanut. She falls in the less than 3%ile for her size overall. That generally is concerning for babies, and they will monitor it closely, but because she has Turner's they know why she is small- we just need to make sure she continues to grow. Her head size is indeed small. Geneticist doctor guy said "I was a bit concerned about her head size, until I saw you (pointing at me). I've been looking at cranium sizes for well over thirty years and can tell your head is also abnormally small. So, that explains that. She takes after her mom." Oh, good? Kevin was thrilled with this statement, he has spent years telling me about my abnormally small head. And I must admit, it was a pretty funny comment. He even had a tape measure in hand ready to measure my head for me in case I didn't believe him. I've had my small head my whole life- I believed him. :)

-Finally, I saved the best for last. Nora's hygroma is shrinking! A week ago at it's largest point it was 11.85mm, yesterday it was 6.6mm. YAY! In fact, they said they can't even call it is cycstic hygroma anymore, it's just a thickening of the neck- something that many girl's with Turner's are born with. VICTORY!

What this means:

All of this new information has the potential to change over time. Things can change rapidly in utero, as seen by her hygroma changes. But, they think that having met the 28 week mark we won't find huge changes in those vital organs. Although, it is said the lung cysts generally increase in size up until week 28, then remain the same or often they get smaller. So let's go ahead and pray for that! Essentially, only time will tell, and meeting Nora herself. They said, "We can't know everything, not until we meet her. She has to answer our questions." So, we wait. But we do prepare for what we think might happen.

We prepare by delivering at Children's, but continuing my prenatal care in Fort Collins. All of my doctors are communicating regularly, and sharing all information. That potential for coarctation gave us a pass to deliver at that wonderfully smiley place, with bright painted walls and cool kid stuff everywhere. Plus, it's super fancy there! Everyone take a big sigh of relief; I wanted this. I feel comfortable with this. 

We will induce labor, and from a cardiology standpoint they want very badly for me to still be able to deliver vaginally. That hygroma tells us she surely can. Thanks for the small head Nora, that should make things easier;). They'll induce around 37 weeks, or plan to for now. If they can push it longer to get her as big as possible, they will. They didn't think that would likely happen, however. 

After she is born things get rolling. She will immediately be started on a hormone of sorts- not a chance could I even begin to spell it correctly. This hormone buys them time, essentially. It stops that PDA valve in the heart from closing so her heart will continue to pump as though in utero. This way, they can slowly monitor the aorta and be certain on whether or not the coarctation exists or not. They'll also need to put a breathing tube in because sometimes babies stop breathing on this hormone. They said at Children's there isn't any need to worry about this as they'll easily monitor it and ensure she is breathing. In fact, Nora will have a whole team monitoring her when she arrives, they'll follow her everywhere, making sure she OK. They'll monitor using an ECHO, as we've used already. If the coarctation exists she will have heart surgery in the first week- usually around day four. This recovery is quick and she will be ok!

Before all of that, in her umbilical entry (that's what they called it- let's say her belly button), will be two cords. These will be inserted immediately. One of them is for monitoring her lungs, the other is for feeding. The hope is that I can hold her for a minute before she is rushed to get all of this- but that isn't a guarantee. That makes me frown a lot. But, I know her breathing is a pretty vital thing to ensure is happening. So, I'll accept it. She will be fed using this tube until they know what is wrong with her lungs. I'll be pumping breast milk ready for her to have once she is ready to eat. We're not really certain when that will be, it will all depend on her lungs. They will do some serial x-rays (every six hours or so) to determine what the lung problem is, and once discovered, if surgery is needed, that comes first then the heart surgery. THEN, she can eat normally. YAY! 

In the mean time, all the tests that usually occur for a baby girl with Turner's will happen. She will spend time in the Neonatal Intensive Care Unit and the Pediatric Intensive Care Unit. Then, she'll come home with us. All of that will likely happen quickly, it all sounds like just a few days recovery for each, and in the end only a week or two total. Then, we'll come back and visit a lot for the first few weeks and months.

Truthfully, it sounds so scary, especially now that I've typed it all out. But, those doctor's seem convinced she is going to be just fine. Despite the heart and lung surgery being, well, heart and lung surgery it's relatively "routine." They said my class of 4th graders seems far more challenging to manage than this. I sure hope they're right! Routine or not, breathing is a delicate thing for a newborn. And I'm not taking it lightly. But I am taking it knowing that she couldn't possibly be in better hands. She has got great doctors who seem to believe in her, and she has parents ready for action. She has all of you here cheering her (and us) on, and I believe God is right there with us- rooting for Ms. Nora. 

So, let's continue to pray for positive outcomes. Nora isn't out of the dark yet- but the future is looking bright to me! 

That being said, we have about 9 weeks until go time. We have: nothing prepared. We painted the nursery in August. We bought one piece of furniture. I think it's time we get this ball rolling! We'll start tonight by going on a date...perhaps this weekend we'll tackle the rest. 

Thanks for the many phone calls, text messages, emails and prayers for us yesterday! They don't go unnoticed! And we feel so blessed! Thank you, thank you!

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!

Gratitude

I imagine that upon hearing any less than wonderful news regarding their child, mothers' hearts sink. I watch it happen from time to time, when I tell a mother that their child had to visit the principal one afternoon, or their child is struggling in reading. It's hard to hear that their baby, their one and only, has anything less than perfect about them.

Some mother's handle it with more grace than others. I don't yet know how I handle it. But, I do know that I've felt the pain. The pain I've felt is a deeper pain than the one that comes from knowing your child made a poor choice on the playground. It's a pain in knowing your child is different. Very, very different. It's a pain in knowing the future you've always dreamed of may never, ever materialize. It's a pain in knowing that parenthood is going to be something different than anything you've ever imagined. It's a pain in knowing that your child can't live the life you've hoped for them. It's a pain in grief and loss for something you've wanted more than anything else in life, and came so very close to having, and then lost.

It was miserable. It was the day they told me that our little girl had little chance of survival, the day they talked to us about how we may get to hold her for a few minutes or hours, and then say goodbye to all our dreams of her, because they likely wouldn't happen. The day they told us that Ms. Nora had a chromosomal abnormality that was likely not compatible for life was just about the worst day I can imagine. 

Then, just about the best day I can imagine is the one where they told us she just might make it! It is positively mind-blowing to me to be absolutely overjoyed about news of a chromosomal abnormality. But I totally am.

 I watched a video today about a couple who had a twenty-week ultrasound determining that their son, Thomas, had Trisomy 13, the abnormality they initially told us our Nora could likely have. They knew he would live a very short life. They didn't plan a baby shower, they didn't prepare his nursery. They planned a funeral, and bought a coffin and headstone instead. They carried him to term, and showed us his life, filled with love- though cut short at only five days. I've seen videos like it before. I've even cried watching videos like it before. But never could I in some strange way relate to a video like that before. And even still, I can't really understand it all. But, all the things that brave family did, are all the things that I once had to imagine Kevin and I doing; I had to wrap my brain around those feelings and actions. It was miserable. And I cried very, very hard watching that video. Perhaps I cried for myself, and perhaps I cried for this family, Deidrea (oddly close to my name, right?), and her husband and son. They were such a wonderful family, and they were so brave, and loving, and everything I'd hoped I could be, had that been us. 

After watching the video I just cried. And I rubbed my big ole' belly, and I felt Nora kick, and I thanked God over and over and over again for giving us the chance to keep her.

It all goes up and down so quickly. Like a roller coaster. I loathe roller coasters. Though I continue to hope that we've hit the lowest point in this particular coaster ride, there are still moments. There are fears, and there are things I dread. There are confusing feelings at times. There isn't really a good way to describe it all. And, though I could write up a beautiful attempt- I know it won't do all of my feelings and those that have felt similar ones any justice. I'll reserve these thoughts and feelings for those of us that have felt them- because words just don't cut it. 

The most powerful feeling of all is one of gratitude. A healthy baby isn't a guarantee. Pregnancy is hardly a guarantee. Both of these things are something we often don't realize is such a fragile gift. I think so many of us take for granted the blessing of a healthy baby, of a baby at all. I know I did. Or maybe I still do? Regardless, it's certainly something to be grateful for! 

I've already had the realization that parenthood isn't at all what I thought it would be. Pregnancy is different than I thought. I'm not as cute and wonderful as a pregnant lady as I had hoped, but I'm also not as cranky as the world predicted I would be (you're welcome, world!) I'm not dying of hunger, though hangry still happens; and I don't need pickles with ice cream each evening. I do, however, not sleep well at night, and I'm sure tired. Who knew!? More than that, I've realized that all of my dreams, aren't always up to me to make happen. God might have other plans. Nora might have other plans. All parents learn this at some point, I imagine. We all realize that our kids might not actually be all we ever imagined. We all discover parenting isn't as easy as we planned, and we aren't the parents we had hoped to be. Maybe our kids will drive us nuts, or they'll cause us mounds of worry or send us into tantrums. I'll bet sometimes most parents even wish different life choices or values for their children. But I'll bet not a single parent out there wishes they didn't get to be the parent to that very child- exactly as they are designed. All struggles: physical, mental, social, emotional, all of them make up who our child is, and I'll bet every parent, though broad-sided at times, might just be grateful for their child, exactly as they are.

Having this new-found gratitude in getting to meet our perfect little girl, I'm shining a new light on this pregnancy. I've spent so many days in fear, not of her, but of not meeting her. I've spent days pondering how to continue to prepare for her arrival- guarding myself from potential pain. I've been scared to have a baby shower, or prepare the nursery. In fact, at first I shut that bedroom door and entered only when necessary. It scared me to get too excited, too attached,  and too prepared seeing now that life is not a guarantee. 

But then I realized how sad I would feel if I didn't get to be excited for her. I truly believe that Nora Grace is going to make it here and lead a joyful life. I do. But, I know now that it isn't a guarantee; but is it ever? If we are going to have to say goodbye to her too soon, I want to live the rest of my life knowing that we celebrated her, and we were the best darn parents we could be for the time we had her. I want her to know and feel love. Fear, I don't want for her. So, I've decidedly said goodbye to fear, and hello to pink..pink everything. 

Welll..sort of. I'm not really interested in pink. And that nursery is not pink. But, we found ourselves registering for baby goods today, and while at it, we pointed that little shopping gun at some pink stuff. It was quite delightful! And you better believe that we are registering so that we can shower this little lady with all the must-have baby goods. We will be well-prepared and thrilled for her chance at life!

Thank you for continuing to pray and celebrate with us! We are so grateful!

Turner's Syndrome

Turner's Syndrome at this point is a complete mystery.
Despite all of the reading, talking, learning we've done- nothing is certain.

I smile each time a friend or family member gives their thoughts or knowledge about Turner's Syndrome, something I've not told them, and something they didn't already know. I love that this blog, this "thing" that has happened, has given so many people that we know the chance to research and learn a little more about this rare syndrome that many girls in the United States, and the world, are living with. We as humans have an amazing ability to know so much, and yet so little about the world around us. This has given all of us a little glimpse into something or somethings that most of us knew little about. How cool is that?

With that, however, comes a bit of fear. This fear is two-fold.

With each bit of information I hear people sharing comes the thought, "How did you figure that out?" For most of us, I'm doubtful we went to the local library or physician and asked some questions and did some research-based reading.

No, it's 2014. Ain't nobody got time for that.

We likely picked up our computer, our tablets, or our phone and went to none other than google, or some variation of it (does anyone use anything but google anymore!?). That's what I did. That's what I do.  And since we all know EVERYTHING on the internet is true, I'm hesitant to be pleased about what they might have read.

Some things on the dear interweb regarding Turner's are true, some are not. Some are terrifyingly true, some of terrifyingly untrue. Some are helpful. Some are just not.

I have talked with some people with Turner's first hand, obviously, and learned some good places to go to for information. This is the website I recommend: http://www.turnersyndrome.org/.  Many people who are dealing with a diagnosis such as this refer to many places on the internet as "the scary websites." They aren't really fond of them. Besides the internet, I've also learned some facts right from doctor's and moms alike. Here is what we know:

**Turner's Syndrome is named after an endocrinologist that first described it, based on multiple patients he had that were displaying similar characteristics. His name was Henry Turner.
**Turner's can only appear in girls.
**Turner's is a rare chromosomal abnormality on the final chromosome, the sex chromosome, the 23rd chromosome passed from both mom and dad, of girls. Girl's generally have XX here, girl's with Turner's have some variation of that. For some, "true Turner's," it is described as XO, meaning there is only one X, and quite literally nothing in that other spot. There is also "mosaic Turner's," which can look pretty different. It can be where they have a partial second X chromosome, half a second X, or a large portion of it. Each of these versions of Turner's carry with them different 'symptoms,' we'll call them.
**Turner's can be from either the mom not passing the X chromosome normally, or the dad. Some doctor's say that whether the mix up was maternal or paternal can cause some variation in the symptoms that girl's portray as well.
**As with all chromosomal abnormalities, there isn't anything that could have been done differently. It happens. It's possible that Kevin and I are at risk for chromosomal abnormalities as a team (meaning we don't match up right magically somehow), though usually it is simply a "oops" in nature.
**98-99% of babies conceived with Turner's syndrome end in miscarriage or stillbirth.
**Of that number, most (no one can seem to tell me what the "most" number is) are in the first trimester, or early second trimester.
**No one seems to know precisely why so many girl's with Turner's are lost- though many think it is the heart, as well as, or in combination with, a slew of many other things that can develop in utero, such as fetal hydrops (fluid in and around more than one area of the baby's body, ex. fluid around the heart and brain) combined with hygroma (Nora has this, a fluid filled sack, usually on the back of the neck) kidney malfunction, and liver problems.
**Despite all of this, something around 1 in 2,000 (I've heard anywhere from 1 in 1,500 to 1 in 2,500) live births deliver Turner's Syndrome babies.
**The average age of diagnosis for girl's with Turner's is around 10 years of age. Many develop normally at first, but fail to grow after a certain point or never enter puberty on their own. It seems like with modern medicine more are being diagnosed at birth. Few are diagnosed in utero.

Symptoms and traits in life can vary greatly! Some symptoms might include:
-Short Stature, with an average height of 4'8". Though modern medicine and early detection can help girl's grow to even an average height in some cases.
-Failing to never go into puberty (though in the mosaic forms, some girls do spontaneously hit puberty on their own). Hormone replacement therapies help these girls develop.
-Infertility. Though it has been heard of for mosaic, and even some true Turner's girls, to conceive. It can be a very high risk pregnancy and cause serious health risks to the mother throughout and after. Modern medicine, again, has made many options available for these women.
-Heart defects occur in about 1/3 of girl's with Turner's. There are four main heart defects they see, most of which are not life threatening, and could vary in treatment from medication to heart surgery.
-Kidney, liver and thyroid concerns might be present (vague, right?)
-Recurring ear infections is common, as well as some hearing loss.
-Scoliosis can occur.
-Girl's with Turner's are more susceptible to have diabetes, as well as obesity.
-Though intelligence level is often that of the average population, girl's with Turner's sometimes have learning difficulties labeled in the school world as an "SLD" (Specific Learning Disability), which often appears in mathematics and spacial learning. Most girls can remain in the mainstream classroom setting, however.
-Social interaction can sometimes be a struggle for these girl's and at times they are diagnosed with Autism or Asperger's as well, though this is rare.
-In very rare cases, and usually when multiple disabilities or abnormalities exist, girl's with Turner's are severely cognitively disabled and are unable to care for themselves or live independently. This is indeed very rare.
-Girl's with Turner's may also have a webbed neck, low-set ears, many moles, and a receding lower jaw line. In some cases I've heard doctor's discuss a larger forehead, low hairline in the back of the neck, and a wider chest as well as an eye-shape in which the eyes point slightly downward.

For those of you curious about what Nora Grace has, we don't know. But, we have a list of "abnormalities" that the perinatologist has found. However, I'm not certain how big of a concern they are at this point. Nora has a cystic hygroma on her neck. It isn't huge. It isn't miniscule. It may resolve itself. It could grow. Last measured it was 10mm at it's largest point, the size of ten dimes stacked. This can be removed after birth if it doesn't resolve itself. They were very concerned about her heart. The cardiologist told us it looks normal, we meet with her soon to check again. Before a diagnosis they searched every little spot on her little body to find things that could be wrong. They found that her head was sort of misshapen (I'm going with the idea that a baby at 20 weeks in utero can't possibly have a "normal" head, right?). They discovered her chest was slightly misshapen as well, caving in at the front just slightly (again, this kid has been floating in a sack of fluid for months, what do you expect!?). She has a forehead that seems too large (for her large brain, obviously!). She is small. At twenty weeks, her cerebellum, which always grows consistently with the age of the baby, measured about 19 weeks, 5 days. Pretty dead on. Her femur, a good way to measure growth, measured about 17 weeks. Two and a half to three weeks too small. Not a huge concern, and can be explained in my non-doctor mind because of Turner's Syndrome, which has a primary symptom of short stature. Finally, it was too difficult to tell on the ultrasound, but near the hygroma it appeared there could be some fluid around her skull, but really only near where the hygroma was. That was inconclusive really; they just couldn't tell. When we asked the doctor how big a concern all of these things were at this point, it seemed as though the answer was, "I dunno," complete with a shoulder shrug.  I commend him for his honesty. And for not scaring the crap out of me. I'm living off of hope.

We don't yet know if Nora has mosiac or true Turner's. In some cases, girl's with mosaic Turner's exhibit less symptoms, or symptoms in lesser degrees. We can get some kind of information to answer this question in utero, and we will discuss that with our doctor, however, at times it is inaccurate. The best way to know will be a karyotype test once she is born. While in utero her heart looks fine, last we knew her kindey and liver looked good, too. But this can all change in weeks to come and still after birth. We will have many tests done once she is born to check every nook and cranny and develop a treatment plan from there. She may come home promptly after arrival, she may hang in the NICU for weeks or months. Right now, we can deliver vaginally at PVH in Fort Collins, though it's possible for a c-section or induction at PVH or Children's as well. Only time will tell. We don't know what symptoms she may or may not have.

We will discover the needs of our little girl as she grows.
And so will every mother and father out there with any child.
We know Nora has got a chromosomal abnormality, this puts her at risk for lots of things, but every child born every day is at risk for a billion things, and while Nora still has all of those risks, plus those associated with Turner's, she is our perfect little girl.

This brings me to the second fold of my fears.

When Nora is finally here people are going to be looking for what is wrong. I will too. I'll need to know. Everyone will look and wonder, "Does she look normal?" "Does her heart work?," "Can you see that hygroma?," "Will she have to have the hygroma removed?," "Is her neck different?," "Is she sick?" etc. etc. etc. etc.

It's human nature. It's normal to need to figure out those things. It's normal to be a bit scared of all of these things. We all wonder. And for the doctor's, whom I have full faith will ensure our little one gets the best possible care, please, search and search and fill us all in when you're done. For everyone else, please know that Nora is a badass (Sorry Mama, not sorry for cursing). If Nora is of the 1% like her that makes it, she deserves a parade, a party, a cupcake, and so much celebration. And that I will ensure she gets. Make no mistake about it. Her arrival will not be littered with fear, but rather so exciting, and filled with gratitude. Everyone. Get. Pumped. Up!

In her life, Nora might choose to discuss her diagnosis with friends and family. There is a chance that her diagnosis will be visible to the unknowing eye.  I am sure there will be comments made, there will questions asked, there will be those that are skeptical and unkind. But given that everyone in this world faces that at some point for some reason or another, and I hope so! it builds our character and our confidence, I am certain Nora will, too. But let's go ahead and let the world discover those differences. Instead of us looking for her abnormalities, let's celebrate all the cool things about her. And for goodness sake, let's praise her for being one tough cookie.