Steroids

Great News!

When I play music, particularly Garth Brooks, for my belly, Nora dances her heart out. 

Good girl, Nora. 

It's almost unreal how much she moves around in there. It's very uncomfortable at times. Sometimes I can't focus on other things when it's happening. And, it's happening at all times, it seems. When I go to sleep, when I wake up, when I teach reading groups. When I walk the dogs. When I write. It's always happening. 

How wonderful is that!? It keeps me knowing she is just fine! And quite feisty! Good- we need a fighter! Not only will her entrance to the world require some umpf, but if Nora is going to make it in a house with Kev and I, she needs to be able to hold her own. :)

Despite the many doctor visits and appointments all seems pretty much the same right now. 

Except one thing. 

Those steroid shots I mentioned in the last post- they already happened! Initially, I thought the doctor was describing treatment for Nora after she is born with steroids, which is one way they treat these lung masses of sorts. But, I received a call from the doctor last week at school. 

"Hi Deidre. This is Doctor Schneider, give me a call back when you get a chance. I want to talk to you about some things I've found on the ultrasound from earlier in the week."

Messages like that should not be allowed to be left on my cell phone while I am attempting to teach children! I obviously left them reading a book for a few minutes while I took care of business. 

What did he find? He thinks the mass on Nora's right lung may have grown a bit from the previous ultrasound. 

WHAT DO YOU MEAN GREW? HOW BIG? SHOULD I BE WORRIED? YOU SAID THAT GROWTH COULD MEAN FETAL DEATH DUE TO RESTRUCTURING OF THE ORGANS- IS THAT HAPPENING!?!?!

"No, no," he says. 

He adds, "We are talking millimeters. Nothing to be too concerned about."

Yeah, ok. Riiiggghhhht.

But, I let him continue. 

He prescribed two shots of steroids for me last weekend. One, then 24 hours later, another. The steroids are typically used when mother's are at risk for preterm labor and their baby might need a little lung boost. The steroids help the lungs develop. Then, when baby comes early the lungs, typically the trickiest part of preterm delivery, are ready for action. 

In our case, it's used a bit differently. It's a new therapy. Seemingly experimental- but not supposed to do any harm, and can only do good. In some cases, when the masses (unknown for us at this point) are CCAM (or CPAM) steroid treatments have helped to reduce their size and impact on baby upon arrival. If it is the alternative to these said cysts (some other form of mass, lung tissue, etc. that would need to be removed), nothing will happen. Except, Nora will have some rockin' lungs. 

So, I went to the hospital. I waited around for an hour. They stuck a needle in my bum and I went on my merry way. Then, I did it again the next day. The shot wasn't that bad, despite my apprehension to doing it. It was no big deal, really. 

I was hoping for some Wonder Woman side effects- like maybe I would be able to do all things with steroids in my body! I wasn't. In fact, I was TIRED. This is mostly because I did not really sleep for the next few nights. At one point I was grading papers, checking items for Christmas, and getting caught up on emails at all hours of the night, for multiple nights. I also had some nice late night snacks.

I seem to have regained control of my sleep schedule. A vital piece of my well-being. Those that know me, know how precious sleep is for me- and for those around me. Have no fear, I'm back on track!

So, as I continue to check items off of my to-do list, we are praying. Praying that steroids are having an impact on Nora's lungs! I know that it is sort of a long shot that this can correct the lung problems, and she can potentially be lung surgery free with this treatment, BUT, I gotta have hope right? At one point it seemed like a long shot that we would ever even get to meet Miss Nora. Now, it seems like we for sure will! And that she'll live a long, happy life with us. 

That being said, I also am not putting lung surgery off of the table. I've learned to prepare for the worst, hope for the best, and pray! 

Join me, will you!?

Friends.

I feel like I've made about 10 new friends since this pregnancy began. They are all doctors or ultrasound technicians. And it's possible I spend more time with them than the friends I've acquired by choice through the years. We've had eight ultrasounds to date. We didn't have a single one until 11 weeks ago. Nonsense! We have seven doctor appointments in the next six weeks, at three different locations, and we'll meet and discuss at least seven people concerning miss Nora. It's completely nuts.

By choice or not, I'm quite glad we've met them all. They are all lovely. They help a lot, each bringing their special gifts to the table and discussion. We've become "friends." Some are techs, case managers, gynecologists, midwives, cardiologists, perinatologists, surgeons, nurses, endocrinologists, geneticists, etc. etc. etc. I'm not really certain that I know all of their roles or why we meet with them all. I'm just trusting they will make it all OK. What else can I possibly do? 

Regardless, we had an appointment yesterday. You can feel our fear rising in the days leading up to appointments such as this one. Times when we meet with the doctors that include ultra sounds we get tense and worried. Quiet. Those are the appointments that have ended in horror for us at times. It's always when they tell us something more than we already know. And usually it hurts to hear.

Not this time though! This time we left knowing almost nothing more than we knew last time. VICTORY! We had almost nothing to talk about after they did their lengthy examination of all of the things. Nora is still rockin' that hygroma, the lung masses, and her little heart- it still is doing it's thing, complete with a potential for coarctation..maybe? Nora continues to play tricks on the cardiologist. We can't wait for them to meet in person so Nora can apologize for her antics in utero. 

But, as I said, we had almost nothing to talk about after the hunt for trouble was through. We discovered there is a potential for a sort of treatment that could work on Nora's lungs after birth, and it wouldn't include surgery! Steroid therapy he called it. 

Now, I want to shout and scream for joy- you mean she might not have to tack on lung surgery as well as heart surgery!? Great! Only, if we're keeping track here they are discussing hormone replacement therapy, growth hormone therapy, drugs at birth for her heart, cords, wires, injections, and STEROIDS? "I'm for no harm, no foul, and there is no harm in seeing if the steroids help before doing surgery," says fancy doctor guy. 

Cool.Agreed. And I don't want to be a Negative Nancy here, BUT, don't they know I'm the resident hippie in my family? I don't do injections. I don't so much as do ibuprofen. I hardly even touch dairy and bread (unless it's cheese- cheese is good!) I'm the "all natural" one here. I like to know what is going in my body and how that makes an impact. I don't do doctors and injections to make things better, I do yoga and running. I don't pop pills, I drink water and take naps. Why must we always take all these "therapies," as they like to call them!? 

I've grown to love my "fix the problem, don't just cover it up" attitude. Never will I say, "my head hurts, I think I'll take ibuprofen." I chug water, take a nap, and relax for a minute. Dare I say I am tired? Well then take a nap, go to bed earlier, and eat a snack. I won't chug caffeine. It works great for me! It doesn't work great for everyone I know- but I dig it. I want Nora to dig it, too!

But these doctors, they keep telling me all the things Nora has to undergo and put in her little body. The mama bear in me asks, "Is that really 'no harm' to inject my newborn baby with steroids?" I mean, I guess, yeah, I can accept it. Certainly sounds better than surgery. And I don't really understand steroids or growth hormones or hormone replacement therapies, so maybe I'm talking nonsense. Bbbuuuuuuuttttttt, I'm a little frustrated with it all the same. 

It goes right back to my original feeling- WHY MUST OUR BABY DO ALL OF THESE THINGS!? Why can't she eat, breathe, sleep, snuggle, deliver and grow like the many babies I've seen before her? It's so annoying that for much of her life we may be injecting her with all sorts of things. She'll see a million doctors. She'll endure far more than Kevin or I have ever endured combined. And it's not even to "fix" a problem. It's to "cover up" a problem. Because she can't have that one extra chromosome, the one we somehow skipped on passing on to her. The one that would ultimately fix the problem. 

Only, I'm not even sure it's a "problem" to be "fixed." 

It's just Nora. And she is unique to her, just like everyone is unique to themselves. She is wonderful. And she is going to be active and fun and cool. She is going to have blue eyes. She is going to learn to ski and swim immediately. 

Someday, I'm sure of it, I'll write about Nora being the biggest blessing we could have ever imagined. I'll talk about how all of my silly worry and all of my words, my fears- all of it was dramatic and nonsense. I'll describe how I should have trusted in God more, and I'll feel embarrassed about being scared and frustrated about something as minimal as shots and steroids and a little surgery here and there.  I'll someday be full of shame about the tears I shed when I learned that my daughter was somehow not "normal." One day I'll think back to these days and wonder how on earth I could be so selfish and so ignorant to the important things in life. I'll be shocked at how silly I was to think that there was such as a thing as "normal" to even compare to. I'll wish I could go back in time and teach myself to quit worrying about it, just trust. Only trust. Only smile. Only laugh. 

Buuuuttttttttttt, I'm human. And that's sorta the problem. So, I'm worried. I'm scared. And I'm sooo tired of all that. I want to go to a doctor appointment and discuss only the pain in my tailbone, the weight I might be gaining too quickly, the acne I can't get rid of. I want to talk about that lovely nursery I'm creating without thinking for even a second if she'll make it here to enjoy the space with us. 

Thing is, I can't. I can't not have those fears. I can't not have those thoughts. So I let them come, I acknowledge them, then I shove them away. I push them far, far away, so as not to let them get in the way of my next great laugh, Nora's next kick or the idea I'll come up with next for how to decorate her room. I need to feel them- it's so important. But once I'm through, I can't allow myself to dwell. That seems dangerous- like it could sure ruin a person's spirit, ruin Nora's arrival, ruin all of the fun of being pregnant! 

I mustn't let that happen! Nora will know only excitement and joy and love when she comes. Or at the very least, she'll learn how to cope with things that are hard, seeing that it's ok to feel, but not let them destroy her. That seems like a good lesson to learn- I better start teaching her right away! 

So, now that I've rid myself of all of my thoughts and fears for the week, I'm on to celebrating the next six weeks! Six weeks left before we get to meet Nora Grace! Hooray!! 

Ode to "Daddy"

FACT: The following may contain mushy and lovely remarks. You've been warned.

This is my husband.

Biking with Luna (and friends, in the background) at Tour de Fat)

So is this.

"Wobbling" with some of my dearest friends and I...just weeks
before he wobbled so hard at a wedding that he ripped
his pants.

And finally, this is him too.

Atop an 18,000 foot peak in Mexico.

Dare I say, I'm proud of him? 

For some of the close friends of Kevin, the idea of hearing him called "Daddy" is almost comical- at times a bit scary? I mean he has, after all, committed a great deal of his teenage and adult life to being obnoxious, a smart-ass, and doing what he can to ensure no one has strikingly high expectations of him. He loves to encourage those around him to make poor choices so he can watch, and laugh. He certainly doesn't take life too seriously. He doesn't take himself too seriously. And Lord knows, he doesn't take me seriously enough! At times he reminds me of a neanderthal with his lack of words and expression coupled with the grunts I hear him make. He has a dry, sarcastic and mostly inappropriate sense of humor. He loves to live life on the edge.  I don't even feel bad about making these accusations of him- he will read this. But, I'm fairly confident that he couldn't be more proud that I not only have chosen to write about him, but also have not excluded these qualities that he possesses. I'm pretty sure he is quite proud- as am I. Regardless, the question still remains, with his adventurous, live-life-to-the-fullest attitude, can Kevin preserve his own life long enough to not only bring a child into this world, but watch it grow? Should we trust him to give this child pointers, guidance and and advice for life? 

...

One night I said to him, "WILL YOU EVER BE ABLE TO PUT YOUR SHOES AWAY, OR WILL THEY ALWAYS GO ON THE FLOOR THREE FEET FROM THE CLOSET?!" 

His response, "I'm just makin' sure your expectations of me don't get too high."

...

When he does something that I find gross, rude, ridiculous, childish, obnoxious, or all of the above, he simply looks at me, smiles, points his left ring finger in the air and says, "FOR-E-VER." 

OHMYGOD. I mean it. For real, GOD, OH MY! "Why is THIS the man you pointed me to, FOR-E-VER?!" is usually my following thought process. 

...

And then, THIS happens. We're having a baby, which in itself is proving to be a pretty stressful, wild ride. And now, our baby girl has a few big hurdles to leap before I can even let Kevin at her to teach her his ways of the world.

We are young. We are terrified. We have no idea what is happening. We just trust in the doctors, our instincts, and in God. There have been moments that I am crumpling. I don't know if I've ever cried or felt anything more deeply than I did the day they informed us that Nora may not live. I was a shattered ball of disappointment and fear. 

Kevin...wasn't. Now, don't get me wrong. Kevin is certainly feeling these feelings. Kevin is worried, Kevin is uncertain. Kevin is tense and stressed. But Kevin is solid. What comes to mind is the old phrase, "When the going gets tough, the tough get going." 

While Kevin has been taking the time he needs to heal from the trauma that was, or maybe is?, he is a rock. He is my rock. Not the kind with a heart of stone- the kind that can support me when I need it most. The kind that lets me call the shots when I need to, and calls the shots for me when I can't. The kind that trusts in my decisions and also questions my decisions, just to be certain we're really making a good one. The kind that makes jokes when smiles are necessary. The kind that doesn't take me too seriously. 

I have moments where I'm angry and and I'm sad and I'm scared and I'm dramatic and when I'm really happy. He let's me be all of those things; he agrees with me, he fights back, he hugs me, he smiles at me- then when I'm done he goes ahead and makes a smart-ass comment, just so my expectations aren't too high. 

It's positively perfect. 

The best man at our wedding once told me to stay as far away from Kevin as I could, "He's a jerk to you," he said. It was many years before our wedding. I remember it like it was yesterday, however. We love to laugh and joke about that comment (and the reasons he had for making it, which weren't invalid at the ripe age of 17), and then we laugh about how that same guy became Kevin's best man. Often times when Kevin does something that might just raise my expectations of him I say to him, "So THAT'S why I stuck with you, even when Wes told me to stay away. Brilliant." 

I've said that very same comment to myself at least 386 times since the first week of September- week 20- "the dark times" I call it. When he lets me go to bed at 7:30 because I've had enough, or when I demand a certain meal or project take place right then and there, when I need to cry or when I just need to relax. He is there for me 100%. And I notice. 

And in knowing Kevin is there for me, I know he is there for Nora, too. Being a dad during pregnancy is a confusing feeling, I imagine. He is disconnected, yet connected. He can't feel her every minute she is doing somersaults in my tummy. He can't have the connection I do with her each day. He knows this baby is his little girl, and he knows he will soon be "Daddy." I'm positive he can't wait to meet her, and snuggle her, and read to her, and play pranks on and with her, and teach her all the things I'm sure I'll have words for him about teaching a child. But I imagine what he feels while I am pregnant isn't the same as what I feel. Not because he is a neanderthal, but because he isn't the pregnant one. I do imagine however, that just as I do, there is more he wishes he could do- perhaps more ways he could be there for Nora as she fights. 

But I feel like he is there- always! He is doing all of the things I wish for a daddy to do. He is strong, but he is available. He is worried, but he isn't overwhelming. He is grateful, but he understands. He is gentle, but he is tough. He is serious, but not too serious. He is approachable, but he is cautious. He is both sure, and unsure. He is prideful, yet apologetic. He is already showing me that he'll be the best Daddy in the world to little Nora Grace.  

While everyone keeps asking how I'm doing and Nora's doing, and while the words expressed here are mine, not his- we mustn't forget Daddy!

Daddy is doing great!

Nora Grace's Tales O' the Womb

Nora girl is still kicking! She is starting to kick very hard- waking me up at night, keeping me from wearing certain clothes. She is getting very strong. AND, I think she is getting bigger- either that, or my hearty diet is starting to take a toll. I certainly feel pregnant now. I feel weird pains, and my back aches sometimes, and boy does bending all the way down take it out of me! Halfway is far more manageable. Trust me, I am not complaining. I am rejoicing! YAY! I get to do all of these pregnant things and feel like all of the things I am feeling are normal. Mostly. I guess?

As previously mentioned, our Nora girl is what they call "high risk." High risk for what precisely, you ask? Children's Hospital did a great job of attempting to answer that question for us. But, no one can really say- lots of things could go wrong- however, lots of things could go right! This is the case for all pregnancies, but it appears that Nora is seemingly "higher risk." They say there is still a risk of still birth, but they think that because we've made it this far, it's is less likely than more likely. They say her heart could need this and that. Her lungs could need one surgery, or another. Her little feet might stop swelling, but maybe not. That hygroma might grow again or maybe keep shrinking.

There are so many if's and maybes. My life is full of this right now. With my somewhat OCD tendencies and preplanned life, ifs don't really fit well. Planning seems impossible right now. Planning to leave your job for an unknown amount of time is a bit tricky. Especially when I must first find someone to do my job, then teach them how to do it. Not knowing how long we'll be in the hospital, who will take care of Luna girl and Torrey, what the future might hold sure is a new feeling to me.

Only it's not. Isn't life completely uncertain? Just when we think we've figured it all out, there is a twist in your plot, a fork in your road, or a new character you just didn't see coming. So, while it all feels different to know nothing is certain, I wouldn't say that much is actually all that different.

Feelings however make up all of our days. They make up our thoughts, our actions, our physical and mental state of being. So, when things feel different life is pretty different. Even if it's not actually different.

That being said, some days I feel pretty different. There are days that I live as happily as ever, completing my tasks, calling my friends, running my puppies, daydreaming of baby things. And then there are days that I spend a whole lot of time worrying. Truth is, I'm really scared. I'm really scared of heart and lung surgery. I'm frustrated that our little girl must endure such a rough start in life, and maybe throughout life, for no reason that I can find. There is no answer to why Kevin and I's little girl has been strapped with all of this hardship. We couldn't change a thing. There is nothing I could have eaten or not eaten, done or not done while pregnant. This happened from the moment Nora was conceived. And I'm pretty sure we humans have just about no control over that. Kevin and I are young, quite healthy, active, law-abiding, morally responsible (or I like to think!), caring, hard-working individuals. We work well as a team. We contribute to society in what we deem meaningful ways. We attempt to live the way that God intended, though, I must admit, we could certainly use some work in this department. Though, I certainly don't believe that our need to live a life more towards God is the reason God has given Ms. Nora all of this. He just doesn't work that way. Right?

So, turns out, there is no answer.
Not one that I can find.
Great news- there is a prayer for that...

"God grant me the serenity to accept the things I cannot change;
the courage to change the things I can;
and the wisdom to know the difference."

We've all heard and read this a million times. But a book I've recently acquired about living with fear has enlightened me to the second paragraph of the prayer, something I'm not sure I've read or noted before....

"Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will; 
that I may be reasonably happy in this life
and supremely happy with Him
Forever in the next." 
--Reinhold Niebuhr

Ah ha! Now isn't that lovely.

So, I've taken to leading a happy life. I can do nothing. I know this- thanks for that serenity and wisdom, God. Now, I ask for the courage to change what I can. I can, with the help of the smart, helpful, kind doctors at Children's, change Nora's outcome. I can give her all of the best care so that her heart and her lungs and her little self are in tip-top shape for this wild life. I can also change my attitude. Worry is part of life, and likely necessary right now. BUT, being optimistic can make a world of difference. I believe in the power of prayer, and I believe in the power of positive thinking. I also believe in the power of smiles, laughter, friends, family and joy!

I've taken this advice from dear friends, and from God himself:

"Trust in the Lord with all of your heart 
and lean not on your own understanding; 
in all of your ways acknowledge him, 
and he will direct your paths." 
-Proverbs 3: 5-6

So, I feel a bit like Carrie Underwood singing, "Jesus take the wheel."
But the truth is, I just don't have another option. I have chosen to accept that, and trust in the Lord that he can and will protect our little Nora Grace.

That brings me peace.
And sleep at night..when Nora so chooses.;)
Thank goodness.

ALL of these words are to say that I'd like to share with you the way we are finding so much joy in this pregnancy, among the worry and fear and the billions of doctors appointments, we've made a fun game. Game and distraction might be a little synonymous here. Either way, it's fun!

We made a list. Months ago I think. We decided to make a list of the things Nora has already done with us, and the things we have left to do with her before she actually gets here. The list was created to help us find a way to enjoy a pregnancy that might end in a loss we didn't know how to deal with. I guess it is still sort of that- but looking  far less dismal. I'm so grateful.

______________________________________________________________

The list is titled:
Nora Grace's Tales O' the Womb                                                              

There are things that she has already conquered
in the womb (in no particular order):

-Eat Walrus Ice Cream (4 times!)
-Eat movie theater popcorn

-Visit Portland, Oregon
-See the Ocean!
-Eat fresh crab
-Wakeboard
-Dance!
-Visit Steamboat Springs
-Have a party with chocolate cake!

-Enjoy as many long Saturday runs as possible
-Summit Mt. Elbert
-Summit Mt. Huron at sunrise!
-Walk for Turner's Syndrome
-Go to a beautiful mountain wedding
-Hear the Elk bugling in RMNP
-hike, hike, hike some more.
-Eat Sushi (not raw, but still delicious!)

-Relish in the glory that is girl's night
-Get a pedicure!
-Enjoy swimming in Colorado and Wisconsin lakes
-Camp outside
-Enjoy Cheyenne Frontier Days, rodeo and concert included
-Eat and Drink all things pumpkin related
-Golf
-Ride Bikes
-See Colorado Moose
-Fly in an airplane
-Visit Chippewa Fall, WI
-see Fireworks
-play in the pool
-go to our favorite dog park
-Dress up fancy!
-visit a pumpkin patch
-Carve pumpkins!
-Dress up for Halloween!

Here are some images of those things happening!

Eating Walrus ice cream! (celebrating 24 weeks!)

Hiking with friends- 10 weeks! 

Tubing with Presley- maybe 6 weeks?

Cheyenne Frontier Days! Perhaps 15 weeks?

Drinking all things pumpkin! 23 weeks!

Hiking Mt. Elbert- 13 weeks!

Oregon Coast- 16 weeks!

Eating fresh crab!- 16 weeks!

Puppy seesster Luna- just because:)

Baby Torrey- just because:)

Hiking in beautiful Steamboat Springs!

The hiking crew!

Just pretty! That's important too, right?

Sushi Night!- 23 weeks!

Visiting family in WI- 11 weeks!

Lake Wissota- 11 weeks

Atop Mt. Elbert- 13 weeks!

Halloween- I'm a "mummy"- 28 weeks!

Random selfie taken for my girlfriends- 25 weeks.

Dressed up fancy for an Estes Wedding- 22 weeks!
With Colleen- 15 weeks!

Hiking in Estes with family- 22 weeks!

Me- Today! 29 weeks!

Finally, the day I told Kevin we were parents-to be!
Wes and Kendall's Wedding- just 4 weeks!

I'm sure there are many more things that Nora has done and seen in this beautiful world. But there is so much more to do, too!

Here is a list of the things we have yet to conquer before she graces us with her presence:

-Run the Fort Collins Turkey Trot
-Eat Sweet Potatoes done right- with marshmallows!
-Eat Green Bean Casserole.
-Snowshoe with puppies!
-Watch daddy (Kevin) ski
-Shop for baby goods and essentials (we really need to get on this)...
-Run the Pumpkin Pie 10k
-Eat Pumpkin Pie (obviously, a post-run trophy!)
-Eat Walrus Ice Cream more times!
-Eat movie theater popcorn a billion more times
-Have a baby shower
-Decorate the nursery

-Purchase and put together (if needed) baby furniture. This is sure to be an adventure!

-Decorate for Christmas
-See Christmas lights!
-Go to Denver Zoo Lights
-Get a massage (coming this weekend!)
-Get more pedicures!
-Go Bowling!
-Take birthing classes (of sorts?)
-Eat P.F. Changs Mongolian Beef
-Walk in my graduation ceremony for my Masters degree (much to my family's distaste;))
-Drink a glass of wine! (If they do it in France, I might as well show Nora what that goodness is all about).
-Ring in 2015 with our dear friends and family.
Finally...we shall survive and experience the joys and terrors of childbirth. Oh boy!

I am certain this list will expand, and we'll check every item off of it as it does. I have a lot of feasting to do when I look at my list of to do's. I'm really good at feasting. I am sure I can manage.

I can't imagine any better way to spend this time than by having fun!

"If it's not fun, you're not doing it right." -Bob Basso

While we all continue to hope and pray that Nora makes it here, happy and healthy, join us as we adventure through the next 8 weeks!

3D Nora (sorry those of you that find 3D creepy!)
Covering her eyes were her knees, hands, and umbilical cord-
But look at the cute little nose and those lips!
(27 weeks!

More 3D Nora- her knees (and some pregnant goo)
are really squashing her face here...but there is a baby in there!

***Disclaimer- I can't begin to explain the headache that attempting to format these pictures in the blog was- please forgive me for the random order and placement of these images.