grace n. an attractive or pleasing quality; good will; the temporary extension of a due date; a blessing.
n. unmerited divine assistance given to humans for their regeneration or sanctification
If you find it odd that I am writing a blog about my unborn child, join the club!
I think it's weird. Very weird.
But, then again pregnancy is weird. Pregnancy is a phenomenon I never thought I would feel so "attached" to. Actually, Pregnant women kinda bug me sometimes. They always talk about their head hurting, and their stomach churning, and their legs getting fat. They get sad about stupid stuff, moan about how alcohol isn't allowed, are emotional basket-cases, and they just talk about it ALL. THE. TIME. And I especially think it is weird when people name their unborn babies. How strange is it to look at your stomach and give it a name!?! The fact that I have named this being inside of me that sucks away my energy and makes my body ache is weird. It's like naming a cold.
Only it's not like that. Not at all. Not even close.
Pregnancy has completely changed me.
Nora, my named and unborn child, has changed me.
AND IT IS SO WIERD. In a good kinda way.
I've often wondered what else I might possibly write in this blog. What can I possibly have to say about this anymore? I've said all the sad, scary stuff. Or, at least what I think anyone would want to hear. The worst is over, I pray! So, I ponder ideas of funny things to post, silly things to post, celebratory things to post. But, it all rubs me the wrong way. You see, because this whole pregnant thing is a strange thing for me to openly talk about with everyone, and because I hate to become the pregnant lady that talks about it ALL. THE. TIME. I just can't imagine what more is needed. Because we want our Nora to live a "normal" life, all chromosomal oddities aside, it feels weird to make a big deal of this pregnancy now; Because there are SO MANY women and families out there that have suffered far worse than Kevin and I are up against right now, it feels somehow selfish, needy, annoying to continue.
But then I go to the doctor again.
And just like that, I have more words to say.
We had a routine check-up today. Regardless, I was terrified. I went through the motions all day, getting all the things done, at warp speed. Then I went to the doctor, they checked my blood pressure. I have this odd pride in myself for having chronically low blood pressure. It's annoying and weird, and it's just how I am. Today though, today, it was high.
Gee, I wonder why!?
I, of course, took that as terrible news and felt sad, scared, and deflated throughout the rest of the appointment. We talked about all the things I hate talking about at this particular appointment. All the things that could go wrong. All the unknowns. We talked about all the stuff I don't like. I just need everyone to tell me all wonderful news, all the time now. I need more comments like, "Your amniotic fluid is beautiful," "You have rockstar blood," and "Her heart rate is perfect!" Because without those joyous words the fear comes rushing back to me.
The doctor isn't concerned about my blood pressure. Kevin isn't concerned about my blood pressure. But, their both concerned about my stress level. Stress is another one of those things that I have annoying pride in myself for having a great deal of success in managing. I can do a bajillion things. And well. And all at the same time. I can multi-task like few others I know. I can hear twenty kids asking me different questions all at once, while the phone is ringing, and I have to pee, and the principal is on his way into my classroom, and I need a snack, and the bills aren't paid, and the dogs haven't been run in a while, and Kevin is out of town, and I don't know what is for dinner, and I have three places to be at once that night and somehow I'll make it all of them, while being pregnant. I can do all that. Plus some more. With a smile on my face. And only those who truly know me might know just how overwhelmed I really am.
But never, ever have I felt stress like this. Never have all the things I do at once raised my blood pressure. Never have I had so little control over something so fragile.
My focus is changed. My heart is delicate now and suddenly ALL of those things, they just don't matter to me. What matters is that Nora makes it. The doctor still can't say she will. The doctor still says the things that could still happen, or have "poor outcomes." They have to say those things. I know they do. And it's important that I know them, and discuss them, and prepare for them.
But by golly. It sure doesn't lower this unimaginable stress that I now carry with me every day.
I know that Nora is a still kickin' though. Literally. Kicking. Today, when checking her heart rate she quite literally kicked the doppler, not once, but twice! And I loved it! Kevin and I both smiled big smiles. They were big kicks! All of her kicks are big kicks. She sure is a fighter!
After those big kicks the doctor asked me, "How are you feeling?" EVERYONE asks me this. I have no idea how to answer because I never know what they mean. Physically? Emotionally? I feel a lot of things! More things than I have ever felt. But she said she wanted to know how I felt in all the ways. I told her physically I am more than fine. Emotionally, we're Ok. "We've had our hard days, and our moments of fear. We have a lot of unanswered questions and fears. But I just don't think that we'll get answers to those until she is here. As far as a diagnosis goes, I think we're feeling Ok. It doesn't seem that scary. But I just need to know she'll get here. I need all the questions answered when she gets here."
The doctor praised us for our strength. She told us to be so proud of ourselves for how much grace we've been showing for our little girl...
You read that correctly. Our doctor had a talk with us about grace. GRACE. The very meaning of grace is the very reason that our little girl is named the way she is. Our doctor doesn't know the name we've chosen. She didn't make any connections. She simply noted the importance of grace in our life, the grace we've been fighting for, the grace we've been grateful for, and the grace we've been trying to live with. She said how grace was something this world needs. Grace is an incredibly important thing to have and show and give in life. She talked a lot about grace. And how it is imperative we have it and continue to dish it out.
I don't know if I am just looking for signs and coincidences that mean Nora is going to make it.
That's not true.
I absolutely am looking for signs...
But God is giving them to me.
Grace is something I haven't been worried about showing. Grace is something I have been downright begging the world to give me. I've been begging God to grant Kevin and I grace. I have been praying that Nora Grace is given all the grace in the world for her life: and a happy one, a healthy one, and a full one. I have begged God for grace upon Ms. Nora every day since this all began. I have been hoping that everyone around us can give us grace as we navigate through all of these feelings and the stress we don't yet know how to manage. Grace has been carrying me through this, in more ways than one.
Today, despite the measly high blood pressure and the talk of things I hate, God granted me grace. He gave me a chance to feel Ms. Nora kick that doppler, telling us all she was just fine. He let me hear the doctor speak of grace, something I think is better suited as a verb, in a way I didn't see coming and from a source I never would have imagined.
Now, as I continue to be a selfish, needy and likely annoying pregnant lady, I ask that you give me grace. Writing for Nora is something I simply must do.
Thank you for celebrating her with me!
Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 2 Corinthians 12: 8-9.
Monday, September 29, 2014
Monday, September 22, 2014
Blessings
Yesterday was the 3rd Annual Butterfly Walk for Turner's Syndrome.
I knew not what to expect when I invited friends to join my family and I in this walk, and in supporting the future TS clinic of Denver, opening in April 2015 at Children's hospital.
I certainly did not expect what did happen.
The Colorado chapter of the Turner's Syndrome Society of the United States hoped to raise $25,000 to go towards said clinic, which would later be put back towards the girls and women with Turner's Syndrome in our state. They raised over $40,000 when all was said and done.
I had hoped to raise $100 in my efforts. I think way too small, and I underestimated the kindness, support and generosity of all of you. Grossly. Team Nora collectively raised over $1,015.
Not only did we raise a ridiculously awesome amount of money to support this cool clinic coming our way, we also represented at the walk! My mom created and brought us some beautiful pink shirts to sport for the day, proudly displaying Ms. Nora's beloved name, and we looked like a big pink mob of love and joy (not your typical mob, but I'll take it). So many more people than I anticipated joined us in the walk and celebrated Nora with us. We couldn't be more grateful.
You're all incredible. And Kevin and I are so proud and honored to call you our friends and family. We are eternally grateful for your support, compassion, grace, kindness, joy, jokes, hugs and love. Truly. A bajillion thanks to you!
Here are some images from the fun we had:
Then, we watched the Broncos lose. But, we sure were proud of them for all that 4th quarter effort, eh?
Finally, Kevin and I had the best conversation to date regarding our little Nora. We talked about the support groups, the walk, Turner's in general, school for her, appointments, our fears and our hopes, the way we want to raise our little girl. We unanimously (thank goodness, since it's really only us two, and we're both so stubborn that debates sure are tricky!) decided that Turner's syndrome is simply something Nora has, not something that she is. We agreed that Nora's life wouldn't ever be about the things she doesn't have, such as an X chromosome, but rather about the things she will have. It's easy to be sad about the struggles we, mostly Nora, are going to face in the years to come. When thought about too much it feels overwhelming that she may not grow, may not hit puberty naturally, may never have children of her own, may have to endure tons of shots, appointments, struggles in school and potentially some ridicule from unknowing bystanders. But, isn't it so much more fun to imagine all the beautiful possibilities her life WILL have? There are far too many to list. But to start, she will have each and every one of you to love and support her, along with us, to cheer her on each and every step of the way. That is no measurable gift, and something that Kevin and I are forever grateful for.
Emma Watson said it best recently, "We should stop defining each other by what we are not, and start defining ourselves by who we are."Now, I know Emma speaks primarily to women's rights, but aren't women's rights also just human rights? I am so happy that our little girl will enter a world where there are role models to speak such meaningful and powerful words of wisdom about being both human and a woman. Thank you, world! (Seriously though, let's not shoot back retorts of all the less-than-meaningful "role model" words of wisdom there are from our nation's celebrities!)
We are certainly counting our blessings today. Each little kick Ms. Nora gives me, though at times a little too strong, is counted as well! We are so incredibly blessed!
I knew not what to expect when I invited friends to join my family and I in this walk, and in supporting the future TS clinic of Denver, opening in April 2015 at Children's hospital.
I certainly did not expect what did happen.
The Colorado chapter of the Turner's Syndrome Society of the United States hoped to raise $25,000 to go towards said clinic, which would later be put back towards the girls and women with Turner's Syndrome in our state. They raised over $40,000 when all was said and done.
I had hoped to raise $100 in my efforts. I think way too small, and I underestimated the kindness, support and generosity of all of you. Grossly. Team Nora collectively raised over $1,015.
Not only did we raise a ridiculously awesome amount of money to support this cool clinic coming our way, we also represented at the walk! My mom created and brought us some beautiful pink shirts to sport for the day, proudly displaying Ms. Nora's beloved name, and we looked like a big pink mob of love and joy (not your typical mob, but I'll take it). So many more people than I anticipated joined us in the walk and celebrated Nora with us. We couldn't be more grateful.
You're all incredible. And Kevin and I are so proud and honored to call you our friends and family. We are eternally grateful for your support, compassion, grace, kindness, joy, jokes, hugs and love. Truly. A bajillion thanks to you!
Here are some images from the fun we had:
Oakley Grace and I enjoying the walk.
Cousin Presley and Auntie Whitney
Team Nora! Count 'em: 29 in all!!! Amazing!
Brenna and Ms. Presley
Dan, Kyle and Pat
Sean, Brianne, Wes and Maree
Presley is too cute not to take a billion pictures of.
These are the Butterflies of the walk. Butterflies are the girls that have Turner's Syndrome- those we walked for and celebrated yesterday!
The walk was so good for us. We met doctors and families with daughters that have TS and we smiled in the sunshine! We noted the many losses to Turner's and we learned that a memorial for those girls is going to be put up at the park to honor them! How lovely! We met others who were diagnosed in utero, and we learned that growth hormone shots aren't really a small matter- 6 days a week of shots is something that I am grateful to be forewarned about! Every part of it was necessary and helpful.
A little more about this clinic that we learned: The clinic will open this April, hopefully. It is meant to be "a one stop shop" for girls and women (Yes, women too! Not just kids!) with TS. Right now, there are MANY appointments to the doctor for these girls, each one with a different doctor, each giving their own recommendations, each looking at different parts of the body. The hope is that the stress, confusion and time commitment is eliminated with the new clinic. In one day girls will meet with all the necessary doctors (psychologist, neurologist, endocrinologist, etc.) to get one set of recommendations to take away. It should be succinct, helpful and supportive! Sounds pretty cool to me, and manageable!
The same doctor that told me all the great things about the clinic asked me this, "How are you feeling?"
Because I am shameless and not about to waste my time with things I'm not really concerned with (yet), I got right to the point. "I feel fine. To be honest, Turner's just doesn't really scare me that much. We can take on all of these things. My pregnancy is going really well, too. But, I need to know if we're gonna make it to term. I wish there was some way to know that my hope isn't false. They say her heart is ok. Is that not enough?"
Like I said, shameless. Since my last doctor never said, "Deidre, you can't ask doctors those kinds of questions," I just went right on doing it. I'm still that girl doctors hate to talk to.
BUT, I'm going to keep doing it, because guess what she said!?!?!?! She said, "No. That is good! That is enough. I would say that if her heart is ok, you're very likely going to have a little girl! Congratulations!"
It's as though Julie Andrews AND Garth Brooks combined have been singing sweet nothings to me for two days now. Not a thing in this world will bring me down after I've been told not ONCE, but TWICE that we have so much to be hopeful for!
Then, we watched the Broncos lose. But, we sure were proud of them for all that 4th quarter effort, eh?
Finally, Kevin and I had the best conversation to date regarding our little Nora. We talked about the support groups, the walk, Turner's in general, school for her, appointments, our fears and our hopes, the way we want to raise our little girl. We unanimously (thank goodness, since it's really only us two, and we're both so stubborn that debates sure are tricky!) decided that Turner's syndrome is simply something Nora has, not something that she is. We agreed that Nora's life wouldn't ever be about the things she doesn't have, such as an X chromosome, but rather about the things she will have. It's easy to be sad about the struggles we, mostly Nora, are going to face in the years to come. When thought about too much it feels overwhelming that she may not grow, may not hit puberty naturally, may never have children of her own, may have to endure tons of shots, appointments, struggles in school and potentially some ridicule from unknowing bystanders. But, isn't it so much more fun to imagine all the beautiful possibilities her life WILL have? There are far too many to list. But to start, she will have each and every one of you to love and support her, along with us, to cheer her on each and every step of the way. That is no measurable gift, and something that Kevin and I are forever grateful for.
Emma Watson said it best recently, "We should stop defining each other by what we are not, and start defining ourselves by who we are."Now, I know Emma speaks primarily to women's rights, but aren't women's rights also just human rights? I am so happy that our little girl will enter a world where there are role models to speak such meaningful and powerful words of wisdom about being both human and a woman. Thank you, world! (Seriously though, let's not shoot back retorts of all the less-than-meaningful "role model" words of wisdom there are from our nation's celebrities!)
We are certainly counting our blessings today. Each little kick Ms. Nora gives me, though at times a little too strong, is counted as well! We are so incredibly blessed!
Tuesday, September 16, 2014
Hallelujah some more...
God is so, so good.
And he sure does listen.
Now, readers out there, listen to this...
While we were waiting for what felt like an eternity at the doctor's office I thought all the thoughts that one could possibly think in such a spot. Kevin tried to distract me. Poor guy got some real looks from me, I'm sure. He kissed my forehead. He heard me say, "Stop, Kev, I just don't care." So, there he sat with me, holding me and helping me through the waiting. And he watched me pray. Over and over and over again. In silence we sat. But my heart wasn't silent. Each beat of my heart felt like the hardest, heaviest beat it's ever taken. I prayed the same thing the pastor on Sunday prayed, "Lord, make today extraordinary." I said, "God, help us."
Then, the doctor came in before we met the cardiologist. His words:
"Things look better today. It looks like a different baby today than last week. Her heart looks good."
I've never been in such disbelief. I just stared at him, mouth open wide. Kevin grabbed my hand and I nearly cried.
Still more:
"Last week she was in such a tight, curled up little ball, we couldn't see her heart well enough. Today she isn't as curled up, and we can see it better. It looks good. The cardiologist will come in and tell you all about it, but know that things looks better."
Well, they can go ahead and tell themselves it's just that little ball Nora was in.
But I know that's not it.
God granted us a miracle.
He listed to all of our prayers.
Garth Brooks once said, "...some of God's greatest gifts are unanswered prayers."
Well, Garth, I never thought I'd be so happy to disagree with you with such vigor.
This is God's greatest gift to me. To us.
The cardiologist came in and she said, "It's a girl! Does she have a name?"
This simple question brought joy to my heart. This doctor saw us as people with more than pumping organs for hearts, but feelings. And she called Nora by her name the rest of the appointment.
And the rest of the appointment I sat silent some more. This time saying this: "THANK YOU, LORD. THANK YOU, THANK YOU, THANK YOU."
She showed us all the parts of her heart that looked "normal." She told us that she can't see every inch of that aorta just yet (Nora was not cooperating, "she is spunky" they said, "that's a great thing!"). She said things like, "Looks like I'll look at all these parts after she is born (can you believe they said that!! AFTER she is BORN!?!). "Turner's certainly puts her at risk of some heart concerns, and we definitely want to look more after birth, but all looks ok, from a cardiology standpoint you can deliver at whatever hospital you want to, and then she'll have some tests in the days after she is born," she said! To me it sounded like she was singing it though- in a Julie Andrews voice of sorts. It was beautiful.
Then, the doctor came back in. He said, "It looks good."
Kevin asked more questions. Things like, "All the other things we talked about last week, are those not as big of a concern now?" The doctor replied, "Pretty much, not as much."
I said things like, "How big of a concern is that hygroma at this point?" He said, "It is what it is. Many times we see it get smaller on it's own. Sometimes, not usually, it stays the same. On rare occasions it gets bigger. We'll keep and eye on it, but you should still be able to have a go at a vaginal birth the way we are looking at it right now. And later on in the pregnancy we'll have you talk with a plastic surgeon. It's really just cosmetic." WHAT? WHAT'S THAT YOU SAY!?!?! I can't even believe it still.
He did mention that there is still a risk for loss. And this I am aware of. BUT, I don't any longer have anything tangible to grasp that shows she will likely not make it. All I have now is blind hope she will. I can handle that.
We aren't out of the dark. Not at all. The rate of loss is high. But the cardiologist said this, "Most of the time what we are most concerned about for loss in Turner's is heart defects. And, Nora's heart looks good."
Hallelujah. Praise that good Lord above.
I still pray every moment my mind is open to thoughts other than things like reading scores and math schedules of students, or what meeting I am at." But now, with each prayer I add a great big, THANK YOU.
Don't forget. With each thanks I send towards God, I include all of you. You've all been so very wonderful for us. I can't express how much love and support I feel from all of you. Your prayers are making a difference, and your joy in our joy means the world to us. Thank you from the very bottom of my heart.
Sunday, September 14, 2014
Turner's Syndrome Awareness
In light of finding out that Nora has been diagnosed with Turner's Syndrome, we've decided to take a look at some of the little information that is out there about Turner's. Upon visiting the Turner's Syndrome Society of the United States webpage (http://www.turnersyndrome.org/) I discovered that there are walks all over the country that aim to raise awareness and funds for those with Turner's.
I've learned some pretty cool stuff.
The Children's Hospital of Denver is planning to open a TS clinic in early 2015! How cool is that? So, there is a TS Awareness walk in Littleton NEXT Sunday, September 21 which is aiming to raise $25,000 more to go towards that clinic. What are the chances that right now is the annual walk for TS? Coincidence? I think not.
I've chosen to start a team and walk next Saturday for Ms. Nora. Since I only found out about this walk with six days until show time I've started small with a goal of raising $100. We'd love your support in helping us meet our goal and helping girls that have Turner's Syndrome all over the state of Colorado!
You can also walk with us if you'd like to! The walk is free, and if you choose to walk, I imagine we'll wear something matchy-matchy like PINK. ;) (I know that is sooo strange for me, I don't even think I own a pink shirt..)
All of this can be done from this website: http://www.firstgiving.com/team/277256. We are Team Nora.
Thank you so very much for all of your support!
I've learned some pretty cool stuff.
The Children's Hospital of Denver is planning to open a TS clinic in early 2015! How cool is that? So, there is a TS Awareness walk in Littleton NEXT Sunday, September 21 which is aiming to raise $25,000 more to go towards that clinic. What are the chances that right now is the annual walk for TS? Coincidence? I think not.
I've chosen to start a team and walk next Saturday for Ms. Nora. Since I only found out about this walk with six days until show time I've started small with a goal of raising $100. We'd love your support in helping us meet our goal and helping girls that have Turner's Syndrome all over the state of Colorado!
You can also walk with us if you'd like to! The walk is free, and if you choose to walk, I imagine we'll wear something matchy-matchy like PINK. ;) (I know that is sooo strange for me, I don't even think I own a pink shirt..)
All of this can be done from this website: http://www.firstgiving.com/team/277256. We are Team Nora.
Thank you so very much for all of your support!
Saturday, September 13, 2014
Anora
So, a few days have happened and the reality of Turner's is just beginning to settle in for me. A lot of people have taken the news in different ways.
Some shout for joy that we have a chance.
Some give their condolences that our little one has any hurdles at all.
Some don't have any idea what to do or say.
All of those responses are fine. And appropriate. And necessary. I'm just grateful you're all letting me talk about it- because it's IMPOSSIBLE for me to not.
I spent all day Friday with a smile on my face. Nothing was going to get me down because I was THRILLED that Nora has a chance!
Then, I spend Friday night looking at google. And that is the WORST idea ever. I should probably be banned from the internet. So, I finished the search by making sure that I read a plethora of happy endings with Turner's. That helped some.
Then, I woke up this morning and read a few more happy stories to keep me going strong.
Truth is, I am not even a little bit scared of Turner's in life. This is a diagnosis I can live with, I can be joyful with, and I TOTALLY do. I'm not even afraid of a potential heart surgery. Modern medicine , I am certain, can make sure our Nora lives a happy and full life.
But, Turner's in utero is something totally different. Statistics aren't on our side for making it to the end with this little one. I've read a million stories, statistics, outcomes, forums, etc. etc. etc. Though it has been written that many people lose their babies to Turner's much earlier in their pregnancies, it has also been written that some lose their babies further along than we are right now.
Needless to say, Nora's constant kicking brings me greater joy than I could have ever imagined. If so much as thirty minutes goes by and I don't feel a kick- I get a little crazy. But, don't worry- she is still kicking! Even as I type this. It is by the grace of God that Nora is still with us. And I just pray that God shines that grace upon us for the next 18.5 weeks (yup, I am counting the days that closely now).
Speaking of grace.
I met with a dear friend/pastor/mentor this past week. He said, "Nora Grace, what a lovely name." And I told him how I had planned Grace for many years (much because of his teachings to me in junior high) and that I fell in love with the name Nora more recently. At that point Grace took a middle name spot. His response: "Well, you know what Nora comes from, right? The word Nora is from Anora, which means grace in Hebrew."
Well, would you look at that! Grace Grace. :) Everyone, let's go ahead and take that as a good sign. We might as well, right?
So, for those of you wondering. We are living with this thought right now: If we make it to a safe delivery, we've made it. And Nora has made it. And all will be fine!, as far as we're concerned. Every ounce of my energy is going into praying we make it that far. That, Lord, is all I ask.
Help us out, would ya?
THANK YOU TO ALL. We checked our mail today, and found more love and support in that mailbox than we could have imagined. Thank you ALL for showing us that love right now.
Some shout for joy that we have a chance.
Some give their condolences that our little one has any hurdles at all.
Some don't have any idea what to do or say.
All of those responses are fine. And appropriate. And necessary. I'm just grateful you're all letting me talk about it- because it's IMPOSSIBLE for me to not.
I spent all day Friday with a smile on my face. Nothing was going to get me down because I was THRILLED that Nora has a chance!
Then, I spend Friday night looking at google. And that is the WORST idea ever. I should probably be banned from the internet. So, I finished the search by making sure that I read a plethora of happy endings with Turner's. That helped some.
Then, I woke up this morning and read a few more happy stories to keep me going strong.
Truth is, I am not even a little bit scared of Turner's in life. This is a diagnosis I can live with, I can be joyful with, and I TOTALLY do. I'm not even afraid of a potential heart surgery. Modern medicine , I am certain, can make sure our Nora lives a happy and full life.
But, Turner's in utero is something totally different. Statistics aren't on our side for making it to the end with this little one. I've read a million stories, statistics, outcomes, forums, etc. etc. etc. Though it has been written that many people lose their babies to Turner's much earlier in their pregnancies, it has also been written that some lose their babies further along than we are right now.
Needless to say, Nora's constant kicking brings me greater joy than I could have ever imagined. If so much as thirty minutes goes by and I don't feel a kick- I get a little crazy. But, don't worry- she is still kicking! Even as I type this. It is by the grace of God that Nora is still with us. And I just pray that God shines that grace upon us for the next 18.5 weeks (yup, I am counting the days that closely now).
Speaking of grace.
I met with a dear friend/pastor/mentor this past week. He said, "Nora Grace, what a lovely name." And I told him how I had planned Grace for many years (much because of his teachings to me in junior high) and that I fell in love with the name Nora more recently. At that point Grace took a middle name spot. His response: "Well, you know what Nora comes from, right? The word Nora is from Anora, which means grace in Hebrew."
Well, would you look at that! Grace Grace. :) Everyone, let's go ahead and take that as a good sign. We might as well, right?
So, for those of you wondering. We are living with this thought right now: If we make it to a safe delivery, we've made it. And Nora has made it. And all will be fine!, as far as we're concerned. Every ounce of my energy is going into praying we make it that far. That, Lord, is all I ask.
Help us out, would ya?
THANK YOU TO ALL. We checked our mail today, and found more love and support in that mailbox than we could have imagined. Thank you ALL for showing us that love right now.
Thursday, September 11, 2014
Hallelujah!
Praise the good Lord above!
We got a call from the doctor today. I was shaking so badly while talking with him that I could barely hear the words he was saying.
But I heard him. Loud and clear.
Nora Grace has Turner's syndrome.
I never thought in all of my days that I would be so happy to get news like that. I was certain for days that what we were looking was Turner's syndrome. But then, last night it hit me like a ton of bricks that it could have been trisomy 13 or trisomy 18, both fatal outcomes regardless. All the pain came crashing down again, and it was hard. But I was wrong! I am cheering that I was wrong. I NEVER cheer at being wrong- I pride myself on my rightness. But the Lord answered my prayers, and your prayers, and he has given our little girl a chance!
Now, as I've stated before Turner's has a low survival rate in utero, but if we can make it to the end here, there is a chance our little one is going to go all the way! We don't know that her fate is to leave this earth as soon as she gets here, and I have never ever been so grateful to God for giving us a chance!
I did the thing that all doctor's hope their patients never do. I'm that girl. Officially.
As I shed tears of joy for the hope that God has given us, all of us, I found myself asking the doctor this:
"I know you can't predict a thing. And this question puts you in a horrible position. And I probably shouldn't ask you this ever. But I need my hope. We've made it this far, Doctor, can we make it further?"
He is gracious. And he said, "I have no crystal ball, Deidre. I can't answer that. But I can tell you that most of my losses to Turner's are in the first trimester or early in the second. I am optimisitic. And all we can do it hope. Let's be positive, and take a look at that little girl's heart on Tuesday to take next steps. We'll also get you in touch with a plastic surgeon to see about getting the hygroma removed after she is here, if we don't see it get smaller before we get there."
BOOOOOOOOOOOOMMMMM. Have you ever heard such beautiful words (other than the wonderful name we've given our little girl...;)!)?
I have a thousand new prayers and fears and anxieties to go with this new diagnosis. And her heart still isn't perfect. But, if that heart can make it, she can too! I want nothing to take away the joy I am feeling in this now hope, so I am going to stop here....but not without asking you to PLEASE continue to pray. We have 19 weeks left to get this girl healthy as a horse so she can prove to this world just how tough she is! Our work isn't done, folks. Let's keep on, keepin' on!
Thank you, thank you, thank you to God, and friends, and family. I can't say it enough times.
We got a call from the doctor today. I was shaking so badly while talking with him that I could barely hear the words he was saying.
But I heard him. Loud and clear.
Nora Grace has Turner's syndrome.
I never thought in all of my days that I would be so happy to get news like that. I was certain for days that what we were looking was Turner's syndrome. But then, last night it hit me like a ton of bricks that it could have been trisomy 13 or trisomy 18, both fatal outcomes regardless. All the pain came crashing down again, and it was hard. But I was wrong! I am cheering that I was wrong. I NEVER cheer at being wrong- I pride myself on my rightness. But the Lord answered my prayers, and your prayers, and he has given our little girl a chance!
Now, as I've stated before Turner's has a low survival rate in utero, but if we can make it to the end here, there is a chance our little one is going to go all the way! We don't know that her fate is to leave this earth as soon as she gets here, and I have never ever been so grateful to God for giving us a chance!
I did the thing that all doctor's hope their patients never do. I'm that girl. Officially.
As I shed tears of joy for the hope that God has given us, all of us, I found myself asking the doctor this:
"I know you can't predict a thing. And this question puts you in a horrible position. And I probably shouldn't ask you this ever. But I need my hope. We've made it this far, Doctor, can we make it further?"
He is gracious. And he said, "I have no crystal ball, Deidre. I can't answer that. But I can tell you that most of my losses to Turner's are in the first trimester or early in the second. I am optimisitic. And all we can do it hope. Let's be positive, and take a look at that little girl's heart on Tuesday to take next steps. We'll also get you in touch with a plastic surgeon to see about getting the hygroma removed after she is here, if we don't see it get smaller before we get there."
BOOOOOOOOOOOOMMMMM. Have you ever heard such beautiful words (other than the wonderful name we've given our little girl...;)!)?
I have a thousand new prayers and fears and anxieties to go with this new diagnosis. And her heart still isn't perfect. But, if that heart can make it, she can too! I want nothing to take away the joy I am feeling in this now hope, so I am going to stop here....but not without asking you to PLEASE continue to pray. We have 19 weeks left to get this girl healthy as a horse so she can prove to this world just how tough she is! Our work isn't done, folks. Let's keep on, keepin' on!
Thank you, thank you, thank you to God, and friends, and family. I can't say it enough times.
Tuesday, September 9, 2014
Amniocentesis
Today I laid on the couch and watched Friends for much of my day. Friends is still playing as I type. It's helping, for certain.
I had to take the day off of work to get an amniocentesis. I'll be back at work tomorrow. I was given strict orders to be a "couch potato." I took those directions very seriously.
An amniocentesis can give us pretty accurate information regarding our little Nora's diagnosis. It is testing primarily for four different chromosomal syndromes: Downs, Turner's, Trisomy 13 and Trisomy 18. I literally have no idea which of these syndromes are one to hope for..they have all their challenges. Babies that do make it full term with Turner's syndrome generally have a good prognosis, but it is rare to make it. Babies with Down Syndrome have a large variety of struggles they may face, but I know more about it, so it seems a little less daunting? 13 and 18 are both terrifying as they have a generally grim prognosis without much success for life even if we go full-term. All of them have some fear to offer me- though some more than others.
I was very hesitant to get this testing done in the first place. I was incredibly indecisive. On one hand we could come out of it with some answers that right now we just don't have. But, on the other hand, the answers could bring more pain than I may be able to bear, and none of the diagnoses would really change little Nora's condition regardless, so why do it? I know that no test can answer the questions I really need: Will Nora live? Will we meet her? No matter what test results we get, we still don't know the outcome. Why not just let her live and accept that God will decide Nora's fate?
But, I decided to take the test. I chose to for a couple of reasons. The first reason being, living in the unknown is hard. I'm slightly terrified that living in the known will be even harder, however. The verdict is still out on that one. The second reason being, it may give us some answers that can help the doctors figure out the best path for delivery and post-delivery before we get to that point. For example, surgeries Nora may need, or if my health takes a turn for the worse during delivery they may know whether or not to be too invasive or too aggressive. Finally, it meant a lot to Kevin. Kevin has been an absolute gem through all of this, and he allows me to make the decisions about my body on my own- but I know that Kevin needed to know. And that, to me, meant a lot.
So, today we drove to that dreaded doctor's office. I realized as we drove up this morning that my anxiety levels near that building are nothing short of sky high. I was struggling to breathe and think as we waited for what seemed like an eternity for them to come and get us for the test. Finally, they came.
It was clear the doctors could tell I wasn't coping well, so they apologized a lot and rubbed my back. They took excellent care of me. They explained everything we're doing, how long test results would take to get back to us, and next steps. Then, they cleaned me up, put on that ultrasound machine and let us hear little Nora's heartbeat once again. 155 today. Still beating! Still strong! And just like that, I was able to relax again. Then, I closed my eyes and let them do their thing. A needle went into my stomach and took three large viles of fluid. One for each test they are getting results from. They said Nora would replace that much fluid in 24-48 hours. When they asked, "how are you doing?" I responded with, "I could sure use a drink." They retorted with, "as soon as we get this needle out of you, you can! They do in France, so you might as well." I laughed (I didn't come home and drink, but I appreciated their honesty and humor).
Then, they took a vile of blood from my arm for some other reasons I don't even remember and sent me off to another doctor for a shot of sorts in my hip. I've been poked and prodded, and well cared for all the while.
As I cried in the arms of one of my co-workers yesterday they told me, "You have to have hope, Deidre." As I confessed that I was terrified to have high hopes in fear of horrible pain that might come after thoughts that are more positive than our outcomes, she said, "Deidre, if you're worst happens, you're going to be devastated regardless of how high your hopes were. It just sucks all around. There is absolutely nothing you can do about that. But having hope may have a positive impact and if it doesn't, at least it gets you through the day." (I am certain there is some paraphrasing done here, but I think you get the idea). This advice is carrying me right now.
While I still have dark and low moments, I know that positive thinking and prayer is the only way that I can get through this. Until the worst happens, it hasn't happened. And grieving a loss that hasn't come is silly. SO, here is to positive thinking!
I started with my first positive thoughts when they offered to let us meet with a cardiologist next week to let her have a look at Nora's heart. I think in my low, confused and half-hearted state on Friday I may have misunderstood the doctors statement about Nora's heart. I know nothing about our anatomy and little about heart development, but what I heard him say was something like, "Her heart ventricles seem flipped. The left (or maybe right?) should be larger than the right (or maybe left?) and they seem flipped. As I look at the chambers I notice the that right (or maybe left) is larger than the left (or maybe right?) So that tells me that they are definitely flipped." This to me meant something like the parts are flipped and in the wrong places. BUT, upon further discussion with Kevin (obviously, a doctor may have been a better choice to discuss this with) we decided he meant the parts are all in the right places, their sizes are flipped. Google (again, a reliable source) led me to a site earlier today that made me think that this defect is caused by a blockage in the aorta and "can be fixed with surgery after birth." NOW, Google and Kevin are certainly not sources to take too seriously, but between the two I've found momentary hope. That hope I am holding on to until I hear otherwise from a cardiologist next week.
The simple fact that I am meeting with a cardiologist gives me hope that little Nora has a chance to survive! I'm running with that thought and it's put a new pep in my step.
Right now, I miss my dream of a flawless (for this moment synonymous with "normal") little girl that I dreamed up before all of it came crashing down. But, I know that even with physical flaws and hurdles to leap my girl can be the biggest blessing we'll ever know. So, I'm hoping (maybe against hope) that she can indeed be that for us!
Keep Nora in your prayers (and maybe Kevin and I too! We sure could use it!)!
Thank you all for the support- every email, phone call and text message means the world to me right now.
Thank you!
I had to take the day off of work to get an amniocentesis. I'll be back at work tomorrow. I was given strict orders to be a "couch potato." I took those directions very seriously.
An amniocentesis can give us pretty accurate information regarding our little Nora's diagnosis. It is testing primarily for four different chromosomal syndromes: Downs, Turner's, Trisomy 13 and Trisomy 18. I literally have no idea which of these syndromes are one to hope for..they have all their challenges. Babies that do make it full term with Turner's syndrome generally have a good prognosis, but it is rare to make it. Babies with Down Syndrome have a large variety of struggles they may face, but I know more about it, so it seems a little less daunting? 13 and 18 are both terrifying as they have a generally grim prognosis without much success for life even if we go full-term. All of them have some fear to offer me- though some more than others.
I was very hesitant to get this testing done in the first place. I was incredibly indecisive. On one hand we could come out of it with some answers that right now we just don't have. But, on the other hand, the answers could bring more pain than I may be able to bear, and none of the diagnoses would really change little Nora's condition regardless, so why do it? I know that no test can answer the questions I really need: Will Nora live? Will we meet her? No matter what test results we get, we still don't know the outcome. Why not just let her live and accept that God will decide Nora's fate?
But, I decided to take the test. I chose to for a couple of reasons. The first reason being, living in the unknown is hard. I'm slightly terrified that living in the known will be even harder, however. The verdict is still out on that one. The second reason being, it may give us some answers that can help the doctors figure out the best path for delivery and post-delivery before we get to that point. For example, surgeries Nora may need, or if my health takes a turn for the worse during delivery they may know whether or not to be too invasive or too aggressive. Finally, it meant a lot to Kevin. Kevin has been an absolute gem through all of this, and he allows me to make the decisions about my body on my own- but I know that Kevin needed to know. And that, to me, meant a lot.
So, today we drove to that dreaded doctor's office. I realized as we drove up this morning that my anxiety levels near that building are nothing short of sky high. I was struggling to breathe and think as we waited for what seemed like an eternity for them to come and get us for the test. Finally, they came.
It was clear the doctors could tell I wasn't coping well, so they apologized a lot and rubbed my back. They took excellent care of me. They explained everything we're doing, how long test results would take to get back to us, and next steps. Then, they cleaned me up, put on that ultrasound machine and let us hear little Nora's heartbeat once again. 155 today. Still beating! Still strong! And just like that, I was able to relax again. Then, I closed my eyes and let them do their thing. A needle went into my stomach and took three large viles of fluid. One for each test they are getting results from. They said Nora would replace that much fluid in 24-48 hours. When they asked, "how are you doing?" I responded with, "I could sure use a drink." They retorted with, "as soon as we get this needle out of you, you can! They do in France, so you might as well." I laughed (I didn't come home and drink, but I appreciated their honesty and humor).
Then, they took a vile of blood from my arm for some other reasons I don't even remember and sent me off to another doctor for a shot of sorts in my hip. I've been poked and prodded, and well cared for all the while.
As I cried in the arms of one of my co-workers yesterday they told me, "You have to have hope, Deidre." As I confessed that I was terrified to have high hopes in fear of horrible pain that might come after thoughts that are more positive than our outcomes, she said, "Deidre, if you're worst happens, you're going to be devastated regardless of how high your hopes were. It just sucks all around. There is absolutely nothing you can do about that. But having hope may have a positive impact and if it doesn't, at least it gets you through the day." (I am certain there is some paraphrasing done here, but I think you get the idea). This advice is carrying me right now.
While I still have dark and low moments, I know that positive thinking and prayer is the only way that I can get through this. Until the worst happens, it hasn't happened. And grieving a loss that hasn't come is silly. SO, here is to positive thinking!
I started with my first positive thoughts when they offered to let us meet with a cardiologist next week to let her have a look at Nora's heart. I think in my low, confused and half-hearted state on Friday I may have misunderstood the doctors statement about Nora's heart. I know nothing about our anatomy and little about heart development, but what I heard him say was something like, "Her heart ventricles seem flipped. The left (or maybe right?) should be larger than the right (or maybe left?) and they seem flipped. As I look at the chambers I notice the that right (or maybe left) is larger than the left (or maybe right?) So that tells me that they are definitely flipped." This to me meant something like the parts are flipped and in the wrong places. BUT, upon further discussion with Kevin (obviously, a doctor may have been a better choice to discuss this with) we decided he meant the parts are all in the right places, their sizes are flipped. Google (again, a reliable source) led me to a site earlier today that made me think that this defect is caused by a blockage in the aorta and "can be fixed with surgery after birth." NOW, Google and Kevin are certainly not sources to take too seriously, but between the two I've found momentary hope. That hope I am holding on to until I hear otherwise from a cardiologist next week.
The simple fact that I am meeting with a cardiologist gives me hope that little Nora has a chance to survive! I'm running with that thought and it's put a new pep in my step.
Right now, I miss my dream of a flawless (for this moment synonymous with "normal") little girl that I dreamed up before all of it came crashing down. But, I know that even with physical flaws and hurdles to leap my girl can be the biggest blessing we'll ever know. So, I'm hoping (maybe against hope) that she can indeed be that for us!
Keep Nora in your prayers (and maybe Kevin and I too! We sure could use it!)!
Thank you all for the support- every email, phone call and text message means the world to me right now.
Thank you!
Sunday, September 7, 2014
Joy
When I confessed to my dear friend Camon that I needed her prayers, and all of her family's prayers, she told me what she prayed for me. She said, "read Isaiah 26:3." I got my Bible, which was too far down in my pile of books in my nightstand, and I found the verse. I found it already highlighted in green and circled. I've prayed this before it seems.
"You will keep in perfect peace him whose mind is steadfast, because he trusts in you," and then I had highlighted verse four as well, "Trust in the Lord forever, for the Lord, the Lord, is the Rock eternal."
Well, Camon. I thank you. I thank everyone in our life right now. Forever.
I went to sleep on Friday in a fog, certain that all the awful feelings I had on Friday would only multiply. But, somehow, only God knows why, I was in some kind of peaceful state.
...
We had always planned on having a BBQ on Saturday afternoon. It wasn't supposed to be anything too special, too big or too fancy. We simply like BBQ and our friends, and we thought we'd combine the two. We had decided however that since we would be finding out the gender of our baby earlier that week that we'd let everyone know that day, in a small simple, no-show kind of way, just as I've been doing everything since the beginning of my pregnancy. We invited only a few friends, and were telling our family earlier in the week.
Then all of this happened...or at least we became aware of what was happening.
So, after leaving the doctor on Friday I told Kevin to drive to Fiona's and buy a cake, because our little girl deserved a party and a beautiful cake with her beautiful name upon it. So we did, and it was beautiful.
There are no more words to say other than THANK YOU. I know that I am not at peace forever. But I was at peace then, and I can't thank everyone enough for helping me do that.
Nothing else to say, but here are some images from our celebrations..
We still have a kicking, squirming little girl.
Party on, Nora Grace.
"You will keep in perfect peace him whose mind is steadfast, because he trusts in you," and then I had highlighted verse four as well, "Trust in the Lord forever, for the Lord, the Lord, is the Rock eternal."
Well, Camon. I thank you. I thank everyone in our life right now. Forever.
I went to sleep on Friday in a fog, certain that all the awful feelings I had on Friday would only multiply. But, somehow, only God knows why, I was in some kind of peaceful state.
...
We had always planned on having a BBQ on Saturday afternoon. It wasn't supposed to be anything too special, too big or too fancy. We simply like BBQ and our friends, and we thought we'd combine the two. We had decided however that since we would be finding out the gender of our baby earlier that week that we'd let everyone know that day, in a small simple, no-show kind of way, just as I've been doing everything since the beginning of my pregnancy. We invited only a few friends, and were telling our family earlier in the week.
Then all of this happened...or at least we became aware of what was happening.
So, after leaving the doctor on Friday I told Kevin to drive to Fiona's and buy a cake, because our little girl deserved a party and a beautiful cake with her beautiful name upon it. So we did, and it was beautiful.
Then, after leaving Fiona's for that delicious and lovely cake we went to the party store. And we got out our credit card, and we bought all the pink and purple our eyes could stand- streamers, ceiling decorations, table cloths, bedazzled jewels, cups, napkins, plates, and a pinata..the works. Our Nora was going to have "banging party," we said. Then, we got candy to fill the pinata...and some shooters for good measure.
Then, slowly, we told all of our friends and family what was happening. And we cried and cried and cried. And then, we smiled, because we were having a party for our baby!
So, we woke up Saturday morning and made bacon. Bacon is good for everything.
Then we walked the puppies around the lake. And we didn't talk about anything sad. We just walked and enjoyed the sunshine. And then, we decorated our house in all the pink we could imagine.
All the while, I was smiling. I was at peace, and I was OK. Somehow.
So, all of the friends and our close family that could, came from near and far to celebrate Nora Grace. And it was AWE-SOME. I loved every minute. I loved that for those hours we were allowed to just be happy. There were questions and some sadness throughout, but by golly we laughed and ate cake, and we had a "banging time."
There are no more words to say other than THANK YOU. I know that I am not at peace forever. But I was at peace then, and I can't thank everyone enough for helping me do that.
Nothing else to say, but here are some images from our celebrations..
We still have a kicking, squirming little girl.
Party on, Nora Grace.
Saturday, September 6, 2014
Why write? Why pink?
I've wanted a lot of things in my life. After all, I'm American, right? I've wanted a car, a house, a boyfriend, a husband, to be teacher, a job, a dog, etc. etc. I've been blessed throughout it all, and generally I've always gotten what I wanted. My life has been nothing short of a blessing.
The one thing I have always, always known I wanted was to be a mom. I've never been afraid of it. I've never been uncertain about it. I 100% believe that being a mom is what I am meant to do. After all, I am the world's greatest dog mom to Luna and Torrey (you may argue that teaching them to break the rules when Kevin is out of town is in fact not a "good mom" thing to do, but I'm only making sure they live out their purpose in this world, and I believe it's to make me happy with couch snuggles..:).
I tried not to be hasty with having a baby, Kevin made sure of that. We waited until the time seemed absolutely perfect. And, I think he finally got tired of my incessant begging. Last Spring we decided to try to have a baby. Suddenly, I was terrified of the one thing I had always wanted. I was scared I wouldn't be able to get pregnant, we would find out one of us was infertile or we as a team just couldn't do it. But, low and behold, we did it...and immediately.
But for some reason my fears never subsided. The day I told Kevin that we were going to be parents I was shaking and nervous. I didn't want to tell anyone at first. I struggled to tell our parents, whom we waited to tell until 8 weeks and I had seen a doctor. Then, I was nearly in tears telling my friends at the end of the first trimester. I was terrified of letting the world know our wonderful news. I hesitated in telling my boss and co-workers at 17 weeks and I never made any public announcements. Everyone kept telling me to celebrate and enjoy this ride, and I completely believe they were/are right. But I was scared. I kept thinking to myself, what if something happens, what if I tell everyone how happy we are, and then we have to tell them something positively devastating? Everyone agreed that I was just "being me" as I often don't like to celebrate myself, and don't do praises well. But, now I wonder, perhaps there was more to it?
I'm new to this whole "mother's intuition" that everyone speaks about. But, I like the idea of telling myself I've had it from the beginning. Just go with me on this one.
We decided to find out the gender of out little one and at twenty weeks we had an appointment for our very first ultra sound. Kevin picked me up from work and I remember vividly our conversation in the car:
K: I'm nervous. I'm excited to find out.
D: Yeah. But I'm nervous. This is when we'll find out if something is wrong. They could say, "your baby has downs syndrome"...or we could hear worse.
K: Oh. Oh no. I hadn't even thought about that.
I started to wonder. Am I nuts? Am I morbid? Why am I always so damn afraid of what might be here?
I'm not nuts. I'm experiencing mother's intuition, I've decided. And after all, I've spent the last 20 weeks with this little girl squirming around inside of me, I know when something isn't right.
We had our wonderful first ultra sound with the ultra sound tech showing each and every part of our beautiful baby's little body, including the spot right between her legs letting us know we have a little girl! So, at that very moment our little one switched from "George or Nora" to simply Nora, Nora Grace. I had chosen Grace probably ten years ago and Nora when I was helping my sister name her little one. I heard that name and called dibs! I was thrilled to get to use that beautiful name...especially because my sister also loved it and had girls. I felt pressure to have a girl someday so she didn't feel sad she never got to use it:)
I am forever grateful for the ultra sound tech. She let us just be joyful, and excited. We couldn't tell at the time, but little Nora was already fighting for her life. Those moments just seeing her, looking healthy to me, were very very happy moments, and for the first time I wanted to shout it to the world that we were having a beautiful baby girl! She danced around in my belly for the entire ultra sound, telling me that she was happy!
Then, the doctor came in.
She shared with us that little Nora had a "concerning something on her neck. It's called a cycstic hygroma. I'm not sure what it means yet. But it could be any number of things, including Turner's Syndrome."
K: What is Turner's Syndrome?
Having just finished my master's in special education, I had heard of it- but not much. Which told me this was rare. Very very rare.
My heart and soul came crashing from the highest point in my life that day, to somewhere low and dark and lonely. I'm certain wherever that is must be near Death Valley, because it shakes a lot with incessant earthquakes, and it feels suffocated by canyons and unbearable pain. I don't even really know if Death Valley has canyons, or if it is in the right part of California to have earthquakes- but I imagine you get my metaphor here?
After days of agony we saw the perinatologist. I had sent messages to everyone I knew begging them to pray and I was praying every moment of my being until I nervously walked in that room. As we got our fancier ultra sound with our seemingly more knowledgable and no-nonsense tech we saw our baby girl again. This time, I knew what to look for- that damn hygroma. I had daydreamed for hours that that fluid-filled whatever would disappear and all would be fine. But it didn't and she measured it. And then, she spent what felt like forever looking at her heart. Her little heart- the size of a dime right now. It looked fine to me, and Kevin counted each ventricle? artery? chamber? Whatever part of the heart we had read is sometimes not correct in Turner's Syndrome. He said he counted all of the right numbers. I smiled, but I couldn't shake how many pictures she took of that little heart.
The doctor came in this time only to tell us, "I'm worried about your little one, at the end of all this, I'm going to ask you if you'd like to terminate your pregnancy."
I told him to leave. I needed a break. I would have run away if I thought I could run from the pain. I screamed, I cried and then I sat still as could be. Paralyzed by fear and pain. We let him back into his office. We spent hours talking, crying and hearing all of the things that our little Nora is up against. It's too many. Her prognosis isn't good. It might be Turner's but he doesn't think so. Her heart is beating a good rate, but how can one survive with all the parts flipped around and backwards?
We have more tests to do and more feelings to feel, but for now we know this: Nora might make it full term. She might not. She likely has a chromosomal abnormality that won't allow her life, or if it does, it won't be long or quality. If it isn't chromosomal (which is possible, but not looking likely), we know we have many, many hurdles to leap. Big hurdles it seems. We know that we are going to be with her as long as we possibly can. We know that if she does make it we will not be doing any amazing feats to keep her alive in pain or without quality of life. Kevin and I both know that we want to live life, not be alive. So, we can't possibly ask our Nora to simply be alive without living.
We have no idea how long we'll have. Maybe we'll get to meet her. Maybe we won't. But, I do know that I am having a little girl and though my heart feels smashed into a million pieces I want to celebrate that little girl every chance I get. As a mom, I've always imagined that I would get to give so much of my life to my children: going to soccer games and birthday parties; making them dinner and helping with homework; talking through the hard lessons in life and having so much fun. I'm nervous that with my beautiful Nora I won't get to do those things. She won't get to have me there to help her and celebrate with her. So, I'm writing for her. I'm writing to celebrate her. I'm writing it all for her. AND, I'm writing it in pink, because every little girl deserves her explosion of pink.
I know that there are more reasons to write, too. I also write because it feels therapeutic to me. I'm writing because while I already feel the love and support of all of the friends and family in my life near and far, I also know that I can't be in touch with everyone through this. It hurts to talk. It doesn't hurt (as much?) to write. So, for those that wish to read, read on!
I thank you for all of your outpouring of love and support. Kevin and I are forever grateful. Please don't stop praying for our little girl, Nora Grace.
The one thing I have always, always known I wanted was to be a mom. I've never been afraid of it. I've never been uncertain about it. I 100% believe that being a mom is what I am meant to do. After all, I am the world's greatest dog mom to Luna and Torrey (you may argue that teaching them to break the rules when Kevin is out of town is in fact not a "good mom" thing to do, but I'm only making sure they live out their purpose in this world, and I believe it's to make me happy with couch snuggles..:).
I tried not to be hasty with having a baby, Kevin made sure of that. We waited until the time seemed absolutely perfect. And, I think he finally got tired of my incessant begging. Last Spring we decided to try to have a baby. Suddenly, I was terrified of the one thing I had always wanted. I was scared I wouldn't be able to get pregnant, we would find out one of us was infertile or we as a team just couldn't do it. But, low and behold, we did it...and immediately.
But for some reason my fears never subsided. The day I told Kevin that we were going to be parents I was shaking and nervous. I didn't want to tell anyone at first. I struggled to tell our parents, whom we waited to tell until 8 weeks and I had seen a doctor. Then, I was nearly in tears telling my friends at the end of the first trimester. I was terrified of letting the world know our wonderful news. I hesitated in telling my boss and co-workers at 17 weeks and I never made any public announcements. Everyone kept telling me to celebrate and enjoy this ride, and I completely believe they were/are right. But I was scared. I kept thinking to myself, what if something happens, what if I tell everyone how happy we are, and then we have to tell them something positively devastating? Everyone agreed that I was just "being me" as I often don't like to celebrate myself, and don't do praises well. But, now I wonder, perhaps there was more to it?
I'm new to this whole "mother's intuition" that everyone speaks about. But, I like the idea of telling myself I've had it from the beginning. Just go with me on this one.
We decided to find out the gender of out little one and at twenty weeks we had an appointment for our very first ultra sound. Kevin picked me up from work and I remember vividly our conversation in the car:
K: I'm nervous. I'm excited to find out.
D: Yeah. But I'm nervous. This is when we'll find out if something is wrong. They could say, "your baby has downs syndrome"...or we could hear worse.
K: Oh. Oh no. I hadn't even thought about that.
I started to wonder. Am I nuts? Am I morbid? Why am I always so damn afraid of what might be here?
I'm not nuts. I'm experiencing mother's intuition, I've decided. And after all, I've spent the last 20 weeks with this little girl squirming around inside of me, I know when something isn't right.
We had our wonderful first ultra sound with the ultra sound tech showing each and every part of our beautiful baby's little body, including the spot right between her legs letting us know we have a little girl! So, at that very moment our little one switched from "George or Nora" to simply Nora, Nora Grace. I had chosen Grace probably ten years ago and Nora when I was helping my sister name her little one. I heard that name and called dibs! I was thrilled to get to use that beautiful name...especially because my sister also loved it and had girls. I felt pressure to have a girl someday so she didn't feel sad she never got to use it:)
I am forever grateful for the ultra sound tech. She let us just be joyful, and excited. We couldn't tell at the time, but little Nora was already fighting for her life. Those moments just seeing her, looking healthy to me, were very very happy moments, and for the first time I wanted to shout it to the world that we were having a beautiful baby girl! She danced around in my belly for the entire ultra sound, telling me that she was happy!
Then, the doctor came in.
She shared with us that little Nora had a "concerning something on her neck. It's called a cycstic hygroma. I'm not sure what it means yet. But it could be any number of things, including Turner's Syndrome."
K: What is Turner's Syndrome?
Having just finished my master's in special education, I had heard of it- but not much. Which told me this was rare. Very very rare.
My heart and soul came crashing from the highest point in my life that day, to somewhere low and dark and lonely. I'm certain wherever that is must be near Death Valley, because it shakes a lot with incessant earthquakes, and it feels suffocated by canyons and unbearable pain. I don't even really know if Death Valley has canyons, or if it is in the right part of California to have earthquakes- but I imagine you get my metaphor here?
After days of agony we saw the perinatologist. I had sent messages to everyone I knew begging them to pray and I was praying every moment of my being until I nervously walked in that room. As we got our fancier ultra sound with our seemingly more knowledgable and no-nonsense tech we saw our baby girl again. This time, I knew what to look for- that damn hygroma. I had daydreamed for hours that that fluid-filled whatever would disappear and all would be fine. But it didn't and she measured it. And then, she spent what felt like forever looking at her heart. Her little heart- the size of a dime right now. It looked fine to me, and Kevin counted each ventricle? artery? chamber? Whatever part of the heart we had read is sometimes not correct in Turner's Syndrome. He said he counted all of the right numbers. I smiled, but I couldn't shake how many pictures she took of that little heart.
The doctor came in this time only to tell us, "I'm worried about your little one, at the end of all this, I'm going to ask you if you'd like to terminate your pregnancy."
I told him to leave. I needed a break. I would have run away if I thought I could run from the pain. I screamed, I cried and then I sat still as could be. Paralyzed by fear and pain. We let him back into his office. We spent hours talking, crying and hearing all of the things that our little Nora is up against. It's too many. Her prognosis isn't good. It might be Turner's but he doesn't think so. Her heart is beating a good rate, but how can one survive with all the parts flipped around and backwards?
We have more tests to do and more feelings to feel, but for now we know this: Nora might make it full term. She might not. She likely has a chromosomal abnormality that won't allow her life, or if it does, it won't be long or quality. If it isn't chromosomal (which is possible, but not looking likely), we know we have many, many hurdles to leap. Big hurdles it seems. We know that we are going to be with her as long as we possibly can. We know that if she does make it we will not be doing any amazing feats to keep her alive in pain or without quality of life. Kevin and I both know that we want to live life, not be alive. So, we can't possibly ask our Nora to simply be alive without living.
We have no idea how long we'll have. Maybe we'll get to meet her. Maybe we won't. But, I do know that I am having a little girl and though my heart feels smashed into a million pieces I want to celebrate that little girl every chance I get. As a mom, I've always imagined that I would get to give so much of my life to my children: going to soccer games and birthday parties; making them dinner and helping with homework; talking through the hard lessons in life and having so much fun. I'm nervous that with my beautiful Nora I won't get to do those things. She won't get to have me there to help her and celebrate with her. So, I'm writing for her. I'm writing to celebrate her. I'm writing it all for her. AND, I'm writing it in pink, because every little girl deserves her explosion of pink.
I know that there are more reasons to write, too. I also write because it feels therapeutic to me. I'm writing because while I already feel the love and support of all of the friends and family in my life near and far, I also know that I can't be in touch with everyone through this. It hurts to talk. It doesn't hurt (as much?) to write. So, for those that wish to read, read on!
I thank you for all of your outpouring of love and support. Kevin and I are forever grateful. Please don't stop praying for our little girl, Nora Grace.
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