Learning How To Ditch The Map

Wow. Welcome back.

To be brutally honest, blogging became extremely overwhelming to me in the midst of coping with an extremely crazy, busy, stressful, scary pregnancy that i simply decided to walk away from it. My apologies. It was something i thought i would be able to keep up with and my heart told me otherwise.

This all seems like crazy deja fu to me. Once again I'm sitting at our local library where i used to write my entries during my pregnancy. Before, I sat here with my client, in the quiet, with thoughts that seemed to absolutely consume me. It seemed manageable.

It wasn't.

Today, I sit here with London, Nash..and you guessed it... Rauri. Three days before our one year anniversary of finding out that our destination was about to be changed, and we were taking off without a map. Spoiler alert; there has been turbulence. Lucky for us, we have had a great tour guide, and my co-pilot hasn't been so bad either.

Funny how those things happen.

I wish there was a way to realistically catch you all up on the last 6 months, other than telling you to go read my Facebook wall. That was a way for me to reach those that would want an update without being swallowed by the demands of keeping up with a blog but i promise that i will try to keep this rolling this time. I'm sure moms of multiple small children can attest to the copious amounts of free time available for things like eating bon bons and blogging. Yeah right.

Anyways, the beauty of this journey is simple to see with the naked eye. She is perfect, thriving, meeting milestones, she's been graced with one of the best little personalities and teaches us all new things daily. We have been absolutely loving being a family of five. Everybody seems to fit right in their place and i couldn't imagine my life being any other way. Cliche, but its true. Nash was born to be a big brother and London just rolls with the punches and makes sure we are all in order. We joke that they are both little mother hens.

I am often told by people that they appreciate that we share our journey so openly. The good, the bad, and sometimes the ugly, they say. Its raw. And what's a trip without a few potholes? Some rest stops? And a flat tire or two. IT HAPPENS. It happens a lot. I will never be one to publish that this trip is easy, but its so incredibly worth it. And there's a reason why we were given the tickets in the first place.

In my life, I've attended church, I've read the scripture, and i have struggled to believe that God does everything with intent. I have wondered why he puts some up against more odds than others, and i try to believe that there's a method to the madness that enters our daily lives. Now a'days I find reassurance in the verse John 15: 16 for it reads " I chose you. I wanted you. I appointed you. I set you where you are." There is a reason that the stars align when they do. In 2010, 2011, 2012, and 2015. We were chosen. And with his trust, i will do justice. I will try tirelessly. But as i shared the other day, my hope is that my children remember me for what i did and gave for them. I hope they remember the long days and nights that Charlie and I endure both together and apart to give them the life they deserve, and teach them to face obstacles with grace just as we try to and to never take the life they have for granted.

Though our journey continues to be a learning experience, i have gathered that when unfavorable things happen i need not let them define us and instead realize that how i react to them is what is going to make the greater difference in the long run. I can chose to be sad as we have recently discovered that Rauri may not hear as great as those around us or find faith in the fact that a hearing aid is a simple and available option to help her tackle what's next. Not to mention, I was told we can get them in hot pink and purple! Score!

Along with the typical hurdles of being a mom, I struggle. I struggle a lot. Anxiety and depression have been a big part of my life for more than fifteen years, but as just about anybody will know it will be amplified when given three incredible little beings that trust you to care for them 24/7 for basically forever. And then some, along with a man-child. But really. All jokes aside this has been by far one of the most challenging things to control after being given yet another more complex child. Today is no exception to the rule as I have battled a more emotional day than I am used to now. I have to remind myself to be gentle. Although at nearly six months old, and having had a pregnancy that seemed to take forever to cope - some wounds still seem very fresh some days. And instead of beating myself up, i will choose to accept it. I've unpacked my baggage of sorrows, self pity, and frustration and i will leave it all here when we go. I will shop when we reach our next destination..


"For she has fire in her soul, and grace in her heart."


I think this is enough rambling for now. I just felt the need to touch base and try to keep up with what i set out on a mission to do, with a little more hope that its reasonable to do now. That, and it's getting a little difficult with Rauri holding onto my pink as i try to type. ;)

Love you all. If you're still on the journey with us, we thank you. Enjoy the sights.

Lex, Char, London, Nash & Rauri.

Small Boat

Like a small boat
On the ocean
Sending big waves
Into motion
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion

The whole song isn't exactly fitting, but the chorus gets me everytime.

I gotta tell ya guys, these blogs get easier and easier to write everytime.

We had our ECHO this morning. It yielded a beautiful, perfectly structured, 100% functioning, beating heart.

We were initially given the odds 1:1,450 of carrying a baby with Down syndrome. Later we were given the odds <1:5 and then a Positive result. Rauri IS the 7%. She escaped the once 93% of babies with fetal diagnosis whose lives would end with termination. And has now dodged the 50% odds of having a heart defect be it life threatening or otherwise.

She was also waived of any abdominal abnormalities, intestinal deformities, and any other birth defects of the like. I am thrilled.

Just as stubborn as her mama, daddy, and two siblings, Ruari is here to show us that she is nowhere near ready to play by the rules. Originally I was crushed that for me, "defying odds" meant a future of the unknown, a scary diagnosis, a baby who could struggle to thrive, and one that will face many hardships.. and now I rest easy knowing that for her, "defying odds" means her strength and health are already proving others wrong. I am feeling reassured. This is just a glimpse of the little spitfire that will grace us in a few months.

"Never Tell Me The Odds; I Will Take Them & Defy Them"

whats next?

3 hour glucose (not sure how one only gains 5 lbs in nearly 25 weeks and can end up with GD) - 7.27.15
3 week follow up with regular OB - 8.11.15
6 weeks from now, full growth scan again, additional echo, high risk Dr visit, regular OB visit - 9.2.15

How Sweet It Is

As the age old saying goes, everything gets better with time.

And I’m starting to think that maybe it doesn’t get better with time,
maybe it just gets sweeter.

As we were given Rauri’s diagnosis nearly 12 weeks ago, and decided to
share with the world nearly 7 weeks ago - everything has only gotten
sweeter. I have continued to be blown away by the incredible amounts
of support that our community, friends and family have shown us. It is
indescribable, amazing, fulfilling, and utterly humbling.

It ‘s on a rare basis that I leave my house and don’t return home
without having an encounter with someone who restores my faith
in my ability to be the best mom I can be to Rauri (and London and
Nash too, of course) and to take what we are given and rock it.

In the last weekend alone I was approached by nearly a dozen people,
who recalled reading ‘Rauris Road’. They offered support and insight
on how sharing our story had directly affected them or left them with
some way to relate. I take pride in knowing I can touch someone’s
heart, affecting their intellect is just a bonus. I can only hope that
people are taking away more from Rauris story than what meets the eye.
Maybe her story will teach compassion, acceptance, and patience.

I guess aside from merely checking in, I want to continue to show my
gratitude..our gratitude.. for those who continue to add to our
strength, and our confidence. A thank you to those who leave us with
constant reminders that somebody has hand picked us for this
incredible journey when we begin to doubt ourselves. And a thank you
to those who continue to love us on days when we may not be so
lovable, weather we may be stressed,  exhausted or have researched
ourselves to death. It does not go unnoticed. It’s often those closest
to us who truly take the brunt of our bad days, and though it is
inexcusable we appreciate the extra patience.

I am finally beginning to feel like we are truly prepared. It’s a
breath of fresh air to be able to be excited lately, and not nearly as
worried. The kicks and rolls and Braxton hicks contractions are in
FULL FORCE. The Braxton hicks I could live without and she CERTAINLY
isn’t a fan of live G.B. Leighton, but I can’t help but smile and my
heart can’t help but to skip a beat whenever she gives me a good
nudge.

The kids and I still check the baby apps every Sunday. I think this
has truly become my favorite part of this pregnancy. Seeing the kids
beam on Sunday morning when we know we have a new update is the cutest
thing ever!! They can’t wait to see how big her hand is now, in
comparison to the day she will be born, to see what size fruit or
vegetable she is nearest to that week, and to read about all that she
is accomplishing in mamas belly. Nash has to kiss her goodnight every
night and doesn’t miss an opportunity to “pet” her and snuggle into
her whenever I stop long enough to pull my shirt up over my belly.
London is a little more passive but we know she is equally as excited
and she never fails to remind us that she got the girl baby she
wanted, while Nash didn’t get the boy baby he had hoped for. I don’t think
either are terribly disappointed. I fall more and more in love with
all of them with each passing day, I swear.

The next step is our fetal ECHO on the 21st and if all looks good,
after our very successful Level 2 Ultrasound we will be *demoted* to a
TYPICAL pregnancy, from a HIGH RISK pregnancy. Never thought I would
be SO EXCITED to be demoted. A few extra growth scans stand in between
me and a very typical, scheduled, c section delivery and I could shout
it from the roof tops.

In other news, Charlie decided the other day that he wasn’t 100% in
love with the full name Aurora and to call her Rauri for short, so
Rauri alone it shall be. London still has it in her head that her baby
is princess Aurora, but I think with a few extra dollars in the
therapy jar she will come around. ;) We also have FINALLY agreed upon
a ‘middle name’ but I think we have decided to keep some excitement
and leave that reveal for her birthday! The first time in the history
of ever I have left something to the imagination, and its kind of fun!
Ha!

SO stay tuned, and thank you thank you thank you again from the bottom
of my heart, and my family’s heart. We couldn’t keep our positivity without being surrounded by incredible people.

Today, just as any other day, I am feeling BLESSED.

Love you all.

I can sleep. I can breathe. I can eat.

 

Since March, we have had so many doctor appointments already with Rauri. Of those appts, 97.2% of those I have left with tear filled eyes, fighting to keep my head up. This was something I was never really faced with before; we had two extremely healthy, quick, surprising, wonderful pregnancies, so some days it has been especially difficult this time around. However, through fears, tears, trials, and triumphs we have made it to the glorious HALF WAY POINT of our pregnancy. Which as many of my fellow Facebookers saw, I celebrated with some online shopping. ;) Anyways, many of you know today was a really big day for Charlie, myself, and really all of the kiddos, but Rauri in particular. And now that our morning has come to a close, I am incredibly excited to be writing for you all. Thankfully this time, my heart, mind and nerves are much more at ease than they were when I wrote the first installment.

 

I had to really giggle this morning throughout our ultrasound (which mind you, was so long I was even granted a pee break mid way through, for real!) Rauri, much like her older brother spent most of the ultrasound with (as most of us with Nash called it) “her dukes up!” She wasn’t much for flash photography. There’s no way she gets that from her big sister! ;) It was priceless. We have been told countless times, “don’t worry she will probably be sleepy and lazy in utero”, “you probably will rarely feel her because they aren’t strong enough for you to get nudged hard enough”, “don’t worry when you don’t see her move on the ultrasound that’s common in kids with down syndrome”.  I giggle. Why? Because none of those have proven to be true with Rauri. Not a single one. Typical to the stubborn, stubborn people she shares her bloodlines with; she already needs to prove others wrong. Big time. Once again, priceless.

 

As the tech stepped away after the first portion of the ultrasound to make room for the Maternal Fetal Medicine Dr to conduct some of her own ultrasound exam she joked with us after we shared a story of Bubba, not exactly loving to wear clothes now adays, and about how he put his parts right out there for us to see when we found out that he was a little boy in the cities during an ultrasound that this little girl definitely shared the love her brother has for being an exhibitionist as her lady parts were well on display. She already isn’t very modest. Great. She definitely gets that one from her mama. We will save those stories for another day though.

 

This Dr. was incredible, and had a lot better bedside manner than we had previously been warned of. She went on with her exam and began to rattle off one hell of a run on sentence (definitely guilty of that myself). This sentence started with, “The reason we really conduct these lengthy ultrasounds is to pay close attention to the heart and its function - as you know it is extremely common in kiddos with Down syndrome to have heart defects and over half of them are affected BUT IM NOT SEEING A SINGLE ONE OF THOSE WITH HER HEART.”

 

WAIT! WHAT? It took a few minutes for my mind to catch up with what she had just said. And then the tears came. Again, another doctor appointment where I didn’t leave without tears, but this time they were tears of relief, of gratitude, of understanding, of ease, of happiness.   

 

Though they still plan to continue with the ECHO in another months time just to be sure there wont be changes in her status, I left the office today without worry, without thinking of delivering in a very strange hospital with staff I didn’t know, I didn’t worry that my daughter would be taken from my body and immediately rushed into heart surgery, I didn’t think of what it could be like to go days without even getting to hold my daughter for the first time. For the first time I could picture my beautiful girl, snuggled in a blanket, with a little pink cap WITHOUT the tubes, and cords, and staples and bandages.

 

I could sleep. I could breathe. I could eat.

 

I know that this doesn’t mean that we are out of the woods entirely, as that doesn’t ever really happen. But we were also informed that there was no evidence of her intestines, her bowel, or her stomach being affected. Also extremely common birth defects in these peanuts. She went on to say that though there are obvious indications that Rauri does in fact have Down syndrome her ultrasound looks incredibly typical in most aspects. True textbook to peanuts that have Down syndrome Rauri’s femurs rang in at a whopping 12^th percentile. Dropping her U/S gestational age from an average 20w 2d to 19w 6d, I will take it! My belly on the other hand is measuring at 22 weeks, with a gigantic weight gain of 4 lbs! ;) They explained that with the first trimester screen findings, all of the blood work and genetic testing, and this ultrasound compiled - we are sitting at a 99.(something)% definitive that Rauri has full blown, full range, Trisomy 21 and not mosaic, translocation, or otherwise. This is something we already have kind of figured and come to terms with, and now spend hour by hour and day by day becoming more and more excited for our perfect little girl.

 

I want to thank everyone for their ongoing prayers, support, phone calls, text messages, facebook messages, friendly smiles, ect. They continue to fuel our positivity and excitement. We cold not feel more prepared and more thankful for the resources and family/friends that we are surrounded by. After today I feel like we could never be defeated.

 

I am kind of bummed, that for such a long ultrasound we didn’t really get great photos but we got to really see her true personality and got to see her face a ton. Due to the placenta being really close to her face it didn’t translate well into 3D images. We will try again at the echo in a month but i will post what i have from today later.

 

All I know is that she is perfect. Beautiful. Healthy. Squirming. Growing. Strong. Mine. Ours. Perfect.

 

Our First Walk Down Rauri's Road

So I decided in lieu of needing a new hobby, blogging seemed fitting as of late.. So, here goes!

 

...grab some tea..coffee..juice..a swiss cake roll, a jar of pickles, a bag of Doritos...whatever it is.. The Byrnes Family has some news to share.

 

After having nearly a month now to process the newest crazy turn on our adventure as a soon to be family of five we are ready to share a bit of our journey on Rauri's Road. Rauri is our new little sweet pea who also happens to be a GIRL! [yippee!] That we have gotten to know a little bit better over the course of many doctor appointments lately and quite a few meetings with the geneticist that we are currently working with at Essentia Health in Duluth. Aurora, who we often refer to as 'Baby Rauri'  in our house..is joining us this fall as most of you know, what many of you don’t know is that Rauri has Trisomy 21. Trisomy 21 is better known as Down syndrome.  To break is down a little bit ‘tri’ obviously means three, ‘somy’ meaning chromosomes. You have 23 pairs of chromosomes (totaling 46) and in people with Down syndrome they have THREE copies of the 21^st chromosome instead of two! Thus rocking designer genes! Its cheesy I know, but you can’t tell me you didn’t smile. I have learned that it’s so incredibly important to find light in the small things and celebrate small victories because hey! At least they are there!

Though we understand this comes as a shock to many of you, a shock that we know very very well, we want to share our number one request early in the game, to save us all really.. please do not tell us you are [sorry..]. There is not a single part of this journey we would now take back or change and the last thing we will ever be for this journey or this blessing is '..sorry'. So spare yourself sounding rather goofy, we are ECSTATIC. And I'm sure many of you by now think I am crazy, or am riding a cloud of adrenaline still; while this was the case for the first two weeks it is far from the truth now. Join us in being EXCITED..just like we were for London and Nash..we are excited. Anxious, nervous, curious, learning, stressing, reading, studying, preparing, shopping, singing, dancing, sharing..we are EXCITED.

 

Now that we have the shock factor out of the way I can give a bit of background as to what Charlie and I have heard, seen, and been through in the weeks past, thankfully we have been far from alone as our immediate family and our few best friends have been on the journey with us since day one, and we now feel it’s time to clue the rest of the people in our life in on this new adventure! I understand word spreads quickly, especially when you live in a small town, and though I urge those close to us to really educate yourself, PLEASE come to us if you have questions, or concerns, or are just curious and want to know more! We are happy to explain, and share what we know so far, and we are more than happy to share our resources, our books, pamphlets, websites, blogs, etc. We have been blessed with many so far on Rauri’s Road and are very thankful for the people who have connected us with them.

 

As I'm approaching my 16th week in our 2nd trimester I realize it’s been almost 5 weeks since we first started our journey on Rauri’s Road. That journey began near 11 weeks when I finally had convinced my OBGYN to conduct the NT [Nuchal Translucency] screen, an ultrasound used to screen for Down syndrome flags. He was extremely hesitant as I have already had what they refer to as two "typical" and healthy pregnancies, no complications, no family history or genetic disorders, no need really in his eyes for this testing. As a mom I have had a weird suspicion since around week 8 that this pregnancy was going to be anything but .."typical" and against his advice to skip the testing because of the calculated 1; 1,450 odds of me carrying a T21 pregnancy he agreed to my pleas. FINALLY! This was really the day that I figured we were in for quite the ride. We were scheduled to see a Nurse Practitioner following the screen and instead walked in Dr. Lebarge.. Which we all know is never a good sign. He explained to us that the space in the tissue on the back of baby’s neck was larger than usual because of what was mostly likely the excess fluid and that was a big flag in our screen as well as the fact that there was not a nasal bone on our little peanut, both BIG flags of babies that have Trisomy 21.. He explained to us that it was now a good idea to have blood work sent to Mayo in the cities where my blood would be tested for  the levels of pregnancy-associated plasma protein-A (PAPP-A) and the pregnancy hormone known as human chorionic gonadotropin (HCG). Abnormal levels of PAPP-A and HCG may indicate a problem with the baby. We were told that this blood test would yield odds within about a week and my phone rang a mere 48 hours later.. Alas the birthday of my sweet silver lining, my niece Kennedys.  A man’s shaky voice on the other end of the phone could only mutter “I’m so sorry kiddo, but I know if anybody could handle this..it’s you.” This voice was Dr. Lebarge once again. Thank god I love him to death, he has seen me through every pregnancy, every obstacle, a C-section, etc. and now he was left to tell me some life altering news. Notice I don’t call this BAD NEWS. Though it was unexpected, he could have informed us of much worse. He asked if I could make it in to see a geneticist immediately down town so we could discuss what was to come but didn’t offer much more information than that. In walks Elizabeth Sengstock who is now also a crucial member of our healthcare team with Rauri. She is our geneticist and a damn good one at that. Our first encounter, I would like to do over as I sat in shock, blankly staring out the window alongside my mother in law (who thank GOD I ran into out and about that day and she offered me to tag along with her, what news that would have been to get alone!) -  while she explained to us the odds of our baby having trisomy 21 was now greater than 1:5 and then went on to say that they do not offer greater odds without a diagnosis. Our next step was a newer screening test they call MaterniT21. This would give us a *Positive or *Negative result for Down syndrome as this is also a blood test that would be sent to Mayo in hopes of receiving news in a week… Positive it was. And oh what a joy that was to hear! If you want to get to know more about that test specifically check here!

https://laboratories.sequenom.com/patients/maternit21-plus/

Funny, you never think you could ever wish Down syndrome on your child, but after hearing of the alternative diagnosis we found ourselves with crossed fingers and toes that, that would indeed be the diagnosis in the days to come.  

We went on later that evening as Kennedy turned one week old to celebrate our GENDER REVEAL! (My little silver lining comes up a lot as I explain our journey. She kept my heart full and happy during some of the most excruciatingly long days of my life. And as I struggled the first few weeks of our diagnosis to find the positives, I turned to her. Thank god my sister in law is a rock and knew that even though I may come and never leave she met me at the door with peanut all snuggled and ready to keep Auntie going.) We gathered with our closest family and friends and of course the VERY excited big brother and sister J as we had planned to from day one to find out the gender of our very last sweet peanut. A room full of people who had already walked a mile on our journey with us, who knew the stress we had been under and raised it with smiles and welcoming messages. Everyone was EXCITED just as we needed them to be…and BOY OH BOY did that pink confetti fly!!! A girl! Although everyone knew she was a girl. I never missed an opportunity to fill them full of my mother’s intuition nonsense, and I was convinced.

We take small opportunities often to sit with the kids and explain that their new baby coming may seem a little different than most babies they have seen in their short lives but encourage them to believe she will be perfect. Just as she will be to all of us.  We try to just keep them included in the really happy, exciting stuff as not to scare them. Because, truly what’s the point of fussing over the unknowns for now.. We want to shop and prepare and decorate her space all together, to make it extra special and to keep everyone involved. Nash loves picking out a new little pink onsie every time I go shopping, I can’t even get over his excitement for a new baby.  It truly warms my heart. London was just relieved to hear she was getting a little sister and didn’t have to deal with another boy in the house! Nash took to mama’s obsession with the name Rauri and London doesn’t miss a beat to remind us that her name is Aurora just like sleeping beauty and that she is going to teach her to love princesses when she gets older just like her big sister. Charlie kind of lost input on the name game after I fell so very in love and had my heart set on Rauri whether boy or girl, from day one.  So it’s with a puffy chest I welcome you to Rauri's Story.

So what’s next you ask?! Well, were not entirely sure! We have a multitude of upcoming appointments and scans in the coming weeks and months. We will follow through with a level II anatomy scan at 20 weeks, instead of the somewhat typical 16 weeks for some Trisomy 21 cases. We will meet our Maternal Fetal Medicine Specialist at this appointment. We have heard marvelous things about her (Dr. O’Day) and look forward to her doing our scan which we have been told can take 2 hours, and I thought my belly got sore at the other ones! Six weeks after that scan we will have a Pediatric Cardiologist come down from Children’s Hospital in the cities to do a fetal Echocardiogram on the baby via ultrasound. This test will give us a better idea if we are facing a heart defect of any degree, as it is a 50/50 shot in babies with Down syndrome. Some of these defects will fix themselves; some of these require surgery to repair. We have been told if Rauri needs her heart repaired shortly following birth she will be delivered at Abbott Northwestern in the cities and her heart surgery will be done in the cities at Children’s. So if you would, send good vibes, say a few prayers that these are things that we will be blessed enough to avoid.  We can handle just about anything but the thought of them taking my newborn and bringing her directly into heart surgery has really had my anxiety up lately. Like I said though, we are trying to avoid worrying over things that a) are out of our control and b) that we just don’t know yet!

 

If any of you have stayed with me long enough to reach the 90^th paragraph I thank you! This is going to be a great tool to keep those interested updated, and those who don’t care to see if free of being flooded on Facebook. We can’t say a million thank you’s enough for our family who have done nothing but tried to lift us up in this time of stress and worry and fill us with all of the resources they can get their hands on. As well as our best friends who don’t miss an opportunity to let us know that we are never alone on our journey and offer constant words of encouragement. I know some people hate hearing it, but I know we as parents have been CHOSEN because the big guy knows what he’s doing. And quite frankly he couldn’t have picked a better life for our Rauri for she will forever be surrounded by the best guardians, her big brother and big sister who will never let her down, her family who will never leave her and who will continue to be her biggest supporter and her best advocate. There isn’t a better group of people to be surrounded by. And I will never be able to convey truly how grateful I am.  Life is good. It may be full of twists, and turns, and mountains, but it leaves you with victory.  You only end up defeated when you chose to give up. 

 

We are now choosing to let our faith be bigger than our fear. And we are hoping you can chose to do the same along with us.

 

If you guys want some quick grab resources to read a little more on Ds and other topics regarding it, here are some great ones I have started with!

http://www.friendshipcircle.org/blog/2013/03/20/42-top-down-syndrome-resources-you-should-know-about/

Love you all!

Keep up with us here; I will always update more as it becomes available to me!

 

Love always, Lex

Charlie, London & Nash too, of course.