Reasons to Freak Out

I don't know if I've made myself clear.

I'm completely freaking out.

Isn't everyone who is at the brink of having their first child?
This morning, I rolled over, looked at the clock, pet the pups, rolled back over, gave Kev a little snuggle and laid under the covers for another HOUR resting. A WHOLE HOUR. Then, I started freaking out- THIS MIGHT BE THE LAST TIME I CAN DO THIS FOR THE NEXT 18 YEARS!?!

Ok- so then I made the realization that I can probably con someone, anyone, into making Nora their responsibility in the a.m. at least once in the next 18 years. And, goodness I sure hope that I can teach an ounce of responsibility to her before 18 that ensures I don't have to be there every waking moment of her existence. At the very least, I can act really, really, really tired so Kev will have to do it. :)

Rolling over and going back to sleep is a very real thing to freak out about.

Turner's Syndrome is not a reason to freak out.

Nora has Turner's Syndrome.
Soooooo? What's the big deal?

Nora might be short. She might not be able to have kids of her own. She might have one less X chromosome than her best friend.

She also might be a marathon runner or champion discuss thrower or spelling bee extraordinaire. She might be terrible at sharing. She might love chocolate cake. She might be a miserable swimmer and hate the snow.

I'm totally over the whole Turner's Syndrome ordeal. It doesn't scare me, it doesn't bother me. Sure, it concerns me because we have some parenting things to figure out in how to discuss this all with Nora, how to make the best decisions medically for Nora, how to be proactive and not allow it to be her everything. But also, some days just let it be her everything.

I imagine Turner's might be something like any other "thing" we deal with. Like how sometimes having glasses totally sucks because you get self-conscious about looking nerdy as a kid, and other days you forget your contacts when you're skiing and it totally ruins the day. And sometimes someone tells you that you look beautiful in glasses, and just like that glasses are just not that bad. Sometimes it will be frustrating, and annoying and even the cause of much sadness- but it's not going to make or break anyones life.

Heart Surgery is a reason to freak out.

Tons of people have heart surgery. Most people live to tell the tale. It can be rough. But they make it. I'll bet that's how it will go for Nora, too. It's gonna be a rough few weeks. And she is going to have a battle scar to show how tough she is. I'm going to be so bummed that we are spending weeks in the hospital, instead of weeks snuggling on the couch. And I'll get a lot more gray hairs. I'll be so tired. And our stress level will sky rocket. It's going to totally suck. And it's looming over our heads. And it's totally freaking us out. But we'll get through it. We'll come home and get to snuggle on the couch eventually. And it's totally gonna rock.

Lung surgery is a reason to freak out.

Current news leads us to think that Nora may not need lung surgery immediately. Maybe in month two or three she will undergo lung surgery. They seem to think that her lung function will not be inhibited by the masses at this point, but may cause infection later on. So, they'll need to be removed- but not immediately. At least we hope. Nothing is certain though- she'll let us know when she gets here. It doesn't sound as though anyone is too concerned about the lung surgery- at least not in the land of medical experts. But we feel pretty concerned about it. And rightfully so.

Child birth is a reason to freak out.

That's gonna totally suck. And hurt. And we both have no idea how that is going to go. Need I really say anything more on that topic?

Having a baby is a reason to freak out.

Having a baby is going to seriously change our lives. Emotionally. Socially. Financially. Physically. Etc. Etc. Etc. So, we'll figure that out as we go. But, for now, we're freaking out.

But, for real, Turner's Syndrome is not a reason to freak out.

If you're looking for a reason to freak out- let's start with child birth. That's happening on January 1. They'll induce at Children's Hospital that night, and hope for a day time delivery on the 2nd. Then, all the decisions start happening. And also, all the baby loving starts happening. And also, some more freaking out.

So, we have like 8 more days to roll over and go back to sleep.

Yay!

"How are you feeling?"

"How are you feeling?"
I've been asked that question at least a bajillion times since I announced my pregnancy.

At least three staff members ask me before 9am every day, and that number jumps to at least seven before the end of the day. Multiple people ask me each time we go to the doctor. Every parent of a student that sees me. Anyone and everyone that knows I'm pregnant has asked me this.

And to all of you pregnant ladies out there, I'm certain you can relate.
And once we have our children I'm sure that we're going to have some camaraderie in feeling bummed  that everyone has quit asking how WE'RE doing, and will instead just ask how our kids are.

But for the time being, everyone wants to know how I'm feeling.
When people ask me that question, I panic. It feels like a loaded question. I always start reading for signs...
Their tone of voice.
The angle of their head tilt.
Are they smiling?
Is there concern on their face?
Do they look excited?
Do they look nervous?
What are their eyes saying?

Most importantly, do they "know?" Aside from this blog, I've just recently started spreading the news of Nora's diagnosis to all the realms of our lives. But, word spreads, I know I don't have to be the one to shout it for others to hear. So, I must always wonder- do they know what we're fighting for?

I spend so much time trying to figure out how to respond to people because I don't know how they'll respond to me. And it's a vicious cycle because people don't know how I'll respond, so they are trying to figure out how to respond to me. Social expectations are so tricky.

I almost always am incredibly mature and make a joke. Or state the obvious, "I feel pregnant.". I'm like the female version of Chandler Bing at times. I never respond with anything to do with anything meaningful. When people ask how they can help I say, "Buy me a drink."

It lightens the air at least.

But, I'd sure like to answer the question this time.

How am I feeling?

I feel pregnant.
I feel like Nora's movements are getting sharper by the day- it hurts a bit.
I feel exhausted.
I feel tired of being pregnant.
I feel anxious about awaiting heart surgery.
I feel hopeful that lung surgery might not happen.
I feel scared that the worst will happen.
I feel uneasy about all the uncertainties.
I feel excited to meet our little girl soon!
I feel like pregnancy is far too long.
I feel nervous Luna and Torrey will get neglected when Nora is here.
I feel like time is crawling.
I feel awed by our little lady's strength.

I feel frustrated that we know about Nora having Turner's- it takes away from her being just our little girl right now. It makes everyone concerned. It makes delivery really freaky. It feels like it defines her at this point, before she is even born.

I feel like we've had too much time to think- like maybe if we found out right now, instead of 15 weeks ago, we would have less time to worry, and that would feel nice?

I feel delighted that we did do testing in order to find out what chromosomal abnormality was causing Nora's birth defects. It makes us worry, it makes us wonder, it makes everyone concerned- but if we hadn't done it the doctor's might still be thinking Nora's chance of survival was slim to none and we might not get the surgeries and the care she needs to keep her alive. But we did do it. So now we know. Now we are doing what we need to do so that Nora can live the very full and happy life God has granted her.


I feel grateful. Life isn't a guarantee, and it certainly still is not for Nora- but she has already been granted more life than doctor's first thought. She is beating odds each an every day. I ask myself every single day, "If so many are lost, why do we get to keep her?" And, I don't know the answer- but I am grateful.

I feel proud. I'm so unbelievably proud of Nora already. Knowing she has Turner's shocked us at first. It took some time to wrap our minds around everything. It took us a bit to mourn the loss of the flawless little girl we dreamed up previously. But then, I became proud. So very proud. I'm proud that she is a fighter. That she is already someone all her own. That she defies the odds. That she isn't just like every other little girl. She is my rockstar. And she is something so special. It's totally awesome.

I feel dumb-founded when people suggest that one day I might be "thankful" for Turner's Syndrome. I  don't hate Turner's Syndrome. But I certainly don't think I need to fall in love with the whole ordeal. Why be grateful for growth hormone shots, hormone replacement shots, heart surgery, lung surgery, edema, and the feeling of being "different." Sure, all of this will make Nora tough, and wise, and so wonderful for so many reasons. But, isn't ok to be mad that she has to endure it at all? I'm proud of her for it, but I don't know that I would ever be grateful for it? No mother anywhere could ever be grateful for this kind of hardship, right? Sure, it will make her who she is- and I'm pumped about it- but that hardly seems like cause to celebrate her heart surgery, right?

But also, I feel thankful for Turner's syndrome. Without Nora having Turner's syndrome we wouldn't know the depth of the love of those in our lives. We wouldn't know how tough Nora is. We wouldn't recognize this unimaginable, blind love and pride and faith that we are capable of. We wouldn't know what we are capable of at all- how strong we really can be. We wouldn't know our perfect little girl exactly as she is: positively perfect for us.

I feel loved.
I feel supported.
I feel terrified.
I feel emotional.
I feel overwhelmed.

I feel like a whale.
I feel so sad to have left my students, my teammates, my coworkers, my job for the next 14 weeks.
I feel silly when students run into my belly, forgetting it's grown so much.
I feel annoyed with insurance.
I feel lucky to have wonderful insurance.

I feel like I have a wonderful husband.
I feel like I miss hot yoga and wine and running.
I feel like my hips can't possibly get wider- if they did baby would for sure just fall through, right?

I feel completely overjoyed that in 2 weeks this baby girl is breaking free, and finally we can get this show on the road!

Thank God!

Bit by bit.

I realize that Thanksgiving is over, and we're on to Christmas. But, I hardly think we should discontinue our thanks just yet- or probably ever. AmIRight?

I'm feeling so incredibly grateful. I can't express just how grateful properly. I tried really hard in writing so many thank you cards this past week. Is there anyone out there that is excited to write thank you cards, especially after a big event, such as a shower? No. I think not. It is an incredibly necessary duty that can at times feel daunting. And any daunting duty is hardly enjoyable. But, I can't explain just how important I felt it was this time around. I feel like I could write a thank you card every single day of the week to everyone who has taken a moment from their busy lives to be there to make sure Kev and I are ok, make sure I am getting what I need and even a little pampered....Ok- probably a lot pampered. :)

We are feeling so much support. And some days it is completely carrying me. Some days it is nearly overwhelming me- but what a wonderful thing to be overwhelmed by? Certainly it is more fun to be overwhelmed by love from family and friends than sub plans or a messy house or the seemingly constant need to ALWAYS grocery shop....I'm eating a whole lot these days.

So, I'm writing to say THANKS! Thanks to everyone for all the things. Thanks for the phone calls. The text messages. The emails. The hugs. The kind words. The laughs. The distractions. The prayers. The encouragement. The positive thinking. The good juju. The love. The gifts.

I don't know how else to possibly go about showing everyone how grateful we truly are, and will continue to be in the weeks to come. I think I'll start by showing you all the outcome of all of you've done.

Nora Grace has a nursery! And I'm in love with this space. I go there every morning while I brush my teeth. I'm sure Kevin thinks I'm nuts. :)

We've got drawers full of baby clothes!

We've got diapers!

We've got clothes and diapers to grow into!

We've got a little more work to do!

We've got a changing station!

A bed, a mobile, and a picture of her pup sisters!

We're set with this lovely butterfly mobile- perfect for our Turner's syndrome "Butterfly"

We've got a full bedroom! Complete with a big basket of books!!!!

Yet to come: the most lovely rocking chair and pillow, right by the window!

I never intended to go all out in this room. Maybe I accidentally did? Oops! It became a mission of mine, something that I slowly had to work up to. I didn't have to work slowly because I had to manage my time- I certainly had to manage my time, but I am a time-management master- I had to work up to it because I've been afraid. I've spent so much time being afraid. And though I've adopted an idea of dismissing fear, it's taking practice.

At one time this room remained shut. Then, the door was opened, but little was done. Finally, I began progress- one thing at a time. One item here, one item there. I did little to ensure it looked like a bedroom at first though, I was comfortable with it looking like a big ole' mess. Slowly, we made it here. However, there are so many onsies, outfits, socks, sheets, frames, lamps, etc. that I've given a home to in this nursery, but I haven't removed tags or washed. I can't bring myself to do it.  I'm still afraid. With each step I take toward completing my work in this space, I take a deep breath, and remind myself that Nora can and will make it. Every time I say "When Nora gets here..." I have the secondary thought that I keep inside, "But what if she doesn't?" 

What if that "Possibility of stillbirth" does happen? What if she isn't strong enough to survive heart and lung surgery? What if something happens during delivery? What if, what if, what if? 

I realize every pregnancy with every baby has what if's. I do. I really, really do. But, I've just been told so many options, so many things to think about, so many reasons to worry, that sometimes I'm very afraid. 

Creating this space has become a practice in trust for me. I've been practicing trusting in God. Trusting in my body. Trusting the doctors. Trusting in Nora herself. After all, she made it this far- I absolutely must trust in her that she can make it all the way. I've been learning to trust this world, and slowly kiss away fear.

This isn't a task I could do on my own, however. I've had to have support. With each kind word I've heard, each joke I've laughed over, each gift I've opened, each prayer I've heard, each person I've hugged, and with every person that has shamelessly put their hand on my belly I've been able to trust a little more. Every time someone asks how I am doing, or the doctor says things look "beautiful," or whenever Nora does another summersault, I find a little more trust.

There is still more to do- both literally and emotionally. We've got a few boxes to unwrap, a few more things to organize and purchase. But, until I'm ready completely they won't be done. And that is ok with me. I haven't kissed away all of my fears. My worries haven't faded- but because of all of you and your positive encouragement and trust, they are growing weaker and weaker.

We've only a few weeks left until we meet our mark. We've made it to 34, something I once thought unimaginable. We see the doctors constantly, but in doing so we see Nora a whole lot too. Her heart beat is perfect they say, she passes all of her "breathing" tests, and my fluid, though occasionally sending scares, is doing a-ok. Nora has developed a great number of hiccups. She is showing us how tiring they can be with big yawns, and she sticks her tongue out at us, letting us know just how much trouble she will someday be! And what's more? She has a whole lot of hair! What a surprise, and so much fun (No, I don't have heartburn folks, I'm chalking that one up as an old wives tale!).

We can't thank you all enough. There are no words to express our gratitude for the many friends and family members that have helped and guided us up to this point.

Keep the prayers coming! I think the scariest might be yet to come, my friends!

 2D Nora Grace at 34 weeks! I think there is really a baby in there, guys!

Woah.

Every year at this time I listen to solely Christmas music. I am loyal to but one station, KOSI 101.1. It's a Denver station, but Fort Collins picks it up quite well.

Every year at this time KOSI does a marathon fundraiser for  the Ronald McDonald House. Every year I listen. They tell heartbreaking and heart warming stories of families that need to stay for weeks, months, or even over a year at this wonderful establishment while their loved ones receive care in the outstanding Denver hospitals. Usually the stories are of kids that are at Children's Hospital- those are after all the most heart wrenching and make people want to donate. It's a good strategy for them, really.

I always hear. I always consider donating. I never do. I always feel awful about not doing it- but I always have a reason why I "can't." We have student loans to pay for, house payments, we donated to _______ already, etc. etc.

This year though, I pushed all of those lame excuses aside. I called them up. It was incredibly hard to do because the guy just could not understand my name. At one point I am certain he spelled it Beipra. It was annoying. But, I stuck it out, got it correct, and made my very small donation. Feeling satisfied and hopeful that my donation might shine some good karma on me for the day that we may have to stay there, I turned up the music, content with myself.

The music did not play, however. Instead, it was time for another account of someones stay at the Ronald McDonald house because their child was at Children's. The announcer came on, "This next story is from a family that found out their daughter was going to need heart surgery before she was even born. Can you imagine the heartache!?"

Why, yes sir, I can. And also, "OHMYGOD- ISTHISREALLYTHEVERYNEXTSTORY!?"

They continued. The woman came on and described how at their 20 week ultrasound they discovered that their unborn daughter would need open-heart surgery to survive, so their family stayed at the Ronald McDonald House while their daughter received care from Children's hospital.

Hello, emotions.

I immediately broke down in to tears. I cry while listening to this fundraiser most years at some point. But, this year was no contest. It's a little unreal listening to people on the radio telling a story that you've rehearsed in your head a billion times as your own. It's not our story, yet. But it is likely going to be someday. And not just that, it was a story of sadness, requesting sympathy, requesting money.

And then, it was a story of hope and joy, too. The mom reported that they recovered from heart surgery and her daughter is "relatively healthy" 3-year-old. No one would ever know she had such a rough start to her life, she said. Wonderful. How wonderful. More joy. More tears. More hope. Nora can be that way, too, right? Oh boy, I sure hope so!

So, on that note- that's how I'm feeling. Pretty woah.

We've been keepin' on. We've been enjoying life thoroughly. And also, exhausting ourselves, which is what Kev and I do best. We're knocking things off of our list of "Nora Grace's Tales O' the Womb," we're preparing a lovely nursery, we are keeping incredibly busy, we are celebrating the holidays, taking birthing classes, and visiting the doctor constantly.

We saw the perinatologist in Fort Collins this week. Great news! Sorta. Maybe? Hopefully! It's too soon to tell, really. After steroid shots two weeks ago all hopes have been on Nora's lung masses shrinking in some way. After our latest ultrasound it looks as though the one on the right is a little harder to make out. It's certainly still there. They at least aren't any bigger. And, since they can't tell as well, it's completely possible that maybe that right one is shrinking a wee bit! Usually it would take 4-6 weeks, so a week and a half is not enough time to tell. Also, as baby's bones develop it gets harder and harder to see things on ultrasound. While also, you never really could make out the masses perfectly via ultrasound anyway. So, there are variables. BUT, there is hope! I'm taking it and running! You can too!

And, we have tacked on a few more doctor's appointments. Just to be safe they've started monitoring me twice a week. On Tuesdays each week we get an ultrasound to measure fluid as well as  Non-Stress Test (NST). Then, on Thursdays we get an NST. Then, we have all of our normal doctor's appointments, too. So, in other words, I've quit being paranoid about pre-term labor or watching too closely for signs of early labor. Turns out, they've got a close eye on me!

We've made it to 33 weeks! We have four weeks left before they'll induce! We don't have a date set- we will be picking a date on December 22nd, at our next adventure at Children's Hospital.

In the mean time, we are continuing to play and pray! And also sleep, because growing a baby is super hard work. We are starting to make sense of the things we need to take care of in order to be gone at the hospital for an unknown amount of time. We are figuring out what baby essentials we may need to get. We're watching birthing videos and also Christmas shopping. Life is happening! Yay!

We've had a wonderful shower, and I thank all of you that came and celebrated with us! Stay tuned for picture updates of the exciting last few weeks before Nora gets here!