Merry Christmas, from the Coxes

Every year we take family pictures to celebrate the year and to send friends and family Christmas cheer, as does 92.5% of the civilized world.  For sure, this year was doubly special and not only because it marked our first year as a family of five, but also because it commemorates the end of one of the craziest and unthinkably challenging years of all of our lives.  We feel grateful to be here, with all five members of our family. The gift of simply being together is nothing to be taken lightly.  

We come to the end of 2015 with immense gratitude for so many people who helped get us to this place- physically, emotionally, financially...all the things.  We are grateful for people who literally helped us take our next breath and who held our lives in their hands.  We are grateful for family who sacrificed more than we could have ever asked of them to be with us and beside us to keep our family together.  We are grateful for people who felt moved by our story and touched by our daughter's life, so much that they would help us financially, make us a blanket, send us a gift, remember us in their prayers.  Your kindness has touched our hearts and made a difference.

I doubt that 2015 could ever be topped (Dear Lord, that was simply a statement, not a challenge.) Some days I feel like a college athlete who glories in his days on the field, knowing that is the bravest, most strong and most heroic that I'll likely ever need to be or get to be.  We were given opportunities that we'll never have again and given surreal circumstances that most people will never face.  

As this most epic of all years comes to an end, I am reminded of a day when 2015 had only barely begun.  We'd heard a diagnosis, seemingly a life sentence, and our hearts were broken in a way that felt so heavy it was sometimes hard to breathe.  The future was unknown.  The day before we left to tour the United States looking for answers for our baby girl, I made a purchase.  Two black and gold skirts on clearance; one to fit my oldest daughter and one in tiny size to someday fit the baby who then lived in my tummy.  As the cashier rang up my purchases, she remarked on how cute the skirts were.  She didn't know that I was wounded, a little bit crushed, and that even the act of forming a response felt like a hardship.  I replied back to her, "Aren't they cute?  I'm getting them for my daughters."  

My daughters.  

I heard myself say it.  

It was the first time I'd said it, I think.  In all of the sadness of finding out that our baby in utero had spina bifida, I hadn't been able to take in the fact that our family was going to get to have two daughters.  I would have two little girls to dress up.  To match.  To tie pigtails for.  To wear matching bows and tutus.  To play make up with.  To share life with.  To be a family with.  It was a small piece of joy returning.  A tiny fleck of hope. 

Our lives turned completely bizarro even beyond that point when the opportunity for a rare and risky surgery meant living in another state, away from my family, for 3 months.  But in my head, I remembered that there was a Target bag 612 miles away, in the corner of my bedroom closet, that held two black and gold skirts that one day my two daughters would get to wear and we'd get to do something terribly normal and family-ish and together, like one day take family pictures for a Christmas card.  

So these pictures feel like a victory.  A hope fulfilled.

God has been faithful to our family this year.  We are grateful for His sovereignty, for His provision and protection.  We are grateful for your hands and hearts that have served us.  We are grateful for our little girl, our daughter, born with stitches, a story, and a smile that has made our family complete.  We are grateful for purple braces and hip abductors and two loving siblings that have embraced everything that was thrown at them with grace and innocence and patience.  We are not disappointed. 

Merry Christmas from the Coxes.  

(Special thanks to Ericka Huff Photography for the gorgeous family photos!!!)

A Different Shade of Green

This morning I was contemplating the evolution of my jealous tendencies.   Because I have time for stuff like that, right?  I read on Facebook the comment of a breastfeeding mom who said that she regularly pumped 20 ounces at her morning pump.  Let that sink in for just a sec.  20 OUNCES, I said!  My mind is REELING at the very thought.  Yeah, so obviously as a breastfeeding mom who does NOT regularly pump 20 ounces at her morning pump, I was jealous of that.  And then it hit me- I used to be jealous of normal things; a girl who was really cute or skinny, someone who is terribly organized or has a cute house, people who don’t like frappucinos and have book contracts.  I’m not saying I’m jealous in a mean, angry, secretly-want-to-hurt-them kind of way.  Just seeing something you admire and wish that you exhibited that yourself, kind of stuff.

I realized that the things that I’m “jealous” of have taken on new form in the past several months.  Which begged the question, is it wrong for a mom with a special needs child to be jealous?  Hearing my whole life that jealousy is a sin, and obviously not wanting to sin, I looked up the difference between “covet” and “jealous”.  I figured if I could get away with not violating one of the Ten Commandments on a technicality, then perhaps I’m not doing so bad.  But a quick check of the definitions did nothing for me.  According to Webster’s Dictionary, jealousy means “unhappy or angry feeling of wanting to have what someone else has” and the word envy means “painful or resentful awareness of an advantage enjoyed by another joined with a desire to possess the same advantage”.  I will caveat that my admiration of people with cute houses or people that pump lots of breast milk (20 ounces…seriously!) has never made me “unhappy or angry”, so whatever is down two notches from jealousy might be the real word that I’m looking for. 

But all this thinking and negotiating about whether or not I’m sinning caused me to think about what I am jealous of…or maybe more appropriately, what I see in others and admire. 

I see babies with legs that work and it hurts a little.  I see people that get packages shipped to their door from Amazon or Old Navy, where I get shipments of catheters from a medical supply company.  The real possibilities of what our lives are open to now makes me yearn for the day when I got to worry about fevers and flu.  Now we worry about brain surgery and whether we’d have time to be life-flighted to Vanderbilt in the event of acute onset of hydrocephalus.  I’m jealous of toes that wiggle.  And if I’m being honest (which, not being honest is also a violation of the Ten Commandments, so maybe I’m not all wrong here), there are days when that little tug in my heart starts to feel like a “painful awareness of an advantage enjoyed by another”.

My heart grieves for my daughter at times, that she won’t get to stand on her tippy toes, that even if she dons ballet shoes, they probably won’t dance.  I grieve for the stares I know she’ll get, for the moments we’ll spend creating an “alternative way” to do most everything.  

I remember a Pinterest-viral saying that originated from Theodore Roosevelt, “comparison is the thief of joy”.   There is so, so much joy in this little face.  I don’t want anything, or any thought, or any advantage to steal the joy that I see when I look in this face. 

Our days do not have to be defined by spina bifida, although we have to work hard at making sure they are not.  Comparing what our lives could have been is a futile line of thinking and robs us of the absolute pleasure that is having this little girl in our lives.

I’ve also realized that another source of my jealousy stems from worry over the future.  I am reminded of wise words delivered to me on one of our darkest of days as we contemplated a new diagnosis and whether or not we should have fetal surgery, “Fix your eyes on Me, the One who never changes. By the time those waves reach you, they will have shrunk to proportions of My design.” (Sarah Young, Jesus Calling). 

I also have realized that when I’m jealous or envious or whatever the word is that makes my heart wish for those advantages, I’m imagining a scenario that was never ours for the taking. We weren’t given the option of a spina bifida-free Poppy.   To have a place where our worries are smaller, we’d have to live in a Poppy-less world.  And now that we’ve tasted and seen what a Poppy-full world looks like,  we wouldn’t trade one moment of life with this precious girl for all of the dancing toes in the New York City ballet.  And perhaps wishing for a spina bifida-free Poppy is like wishing for my other kids to have been born with wings- they just didn’t come that way. 

We’ve entered a new world.  It really is a different world for us.  Forever, I think.  It isn’t a bad world, it isn’t an unbearable world.  It’s just different. And breathtaking and stressful and delightful and heartbreaking, all at the same time.  Finding the balance between hope in miraculous possibilities and the reality of what our lives look like medically, statistically or scientifically, is a gray place for us.  Just the same way that wishing for our little girl to have things in life that most would consider a given can sometimes feel a little bit like jealousy.  

And I’m not so sure that’s a bad thing. 

Poppy's Birth Day

So by nature, birth stories are generally pretty personal.  Not necessarily in a “I didn’t want you to know that” kind of way (because if you don’t want people to know, then why put it on a blog, silly?!), but rather in a “that’s way to many details that most people don’t really care about way”.  So in an effort to be courteous if you really don’t care about all of the details but would rather look at the super cute pictures of our baby girl and read the cliff’s note version and “Full house” quiet music lesson part, I’ve devised a little quiz. 

·       

           Do you care about all of the minute details that I personally want to remember 35 years from now? 

o   If yes, then read on. 

o   If no, then you may peruse the pictures and skip down to, like the third to last paragraph. 

Did you make your choice?  Okay.  Well, then proceed as you see fit. 

Poppy and I glided (while sitting!) through bed rest for several weeks.  Our fetal surgery was at 24 weeks gestation on February 3^rd and the goal was to remain pregnant until a planned C-section that was scheduled for May 1^st, or 37 weeks.  I was super fortunate to have a wonderful flow of visitor traffic through my bed rest.  My hubby and kids got to come one weekend, my sisters came to visit, my mom brought my little brother and my kids for a week, and my mother in law was the “Anchor Caretaker”. 

We were coasting by nicely until my 32 week appointment when an ultrasound showed a small leak in my amniotic sac.  Some fluid had gotten in between the layers, which put me at risk for my water breaking early as well as placental abruption.  I had been prepared to ask at that appointment if I could be allowed to have a one- time hair appointment and restaurant outing; however I left with strict instructions to be the most vigilantly lazy person in the history of the world.  I even timed my showers!  When the 5 minute bell rang, I had to get out!

I was monitored outpatient for 5 days, but then was admitted back into the hospital on Tuesday, March 31^st- it was the week leading up to Easter and I was 32 weeks and 4 days pregnant.  I’m somewhat ashamed to say that my first reaction was to be annoyed that I had to be back in the hospital.  I felt more certain that I was going to be sitting in a hospital bed for weeks and weeks than I was that I’d have a baby born premature.

I will say that since the day of our diagnosis, I “bargained” with God.  Not in a bad way, I don’t think.  More like setting limitations with what I’d be able to deal with.  For example, I believe that I can handle being on bed rest, as long as I do it in Oklahoma.  Or, I can handle having a C-section as long as my own doctor in Tulsa can perform it (those of you that know me well know that I have LOVED natural child birth with my other two babies, so knowing that it wasn’t an option for me was a hard pill to swallow).  Surely God could cut me some slack and allow me SOME preferences here, right? 

Slowly but surely, many of the frivolous things I said “as long as…” over, slipped away from me.  And every one of those “as long as…” proved not to be as earth shattering as I’d imagined.

Two of my “as long as…” that I was still clinging to when I was admitted into the hospital were that Poppy would not be born too premature- I was hoping we could at least make it to 35 weeks, if not the 37 we’d originally hoped for.  But the last one was that Matthew could make it back to Nashville in time for the birth.  This one really did sting.  How could God allow a father not be there for his own daughter’s birth?  I know it happens frequently, but not in my world.  Especially after all that we’d been through, couldn’t God allow us this one request?  In my mind, it would have been such a sweet, picturesque ending to a difficult chapter. We come from two previous birth experiences where Matthew was there from the first contraction to the last.  Most notably, as some of his more heroic birth moments, he rubbed my back with tennis balls for 15 hours with Gavin’s birth and with Harper’s, he drove calmly, yet with hurried intention to the hospital when my water broke in our car on the BA Expressway in between the Yale and Sheridan exits.  Suffice it to say, he’s a pretty key fixture in all of our birth stories, so the idea of not having him there for Poppy’s birth was unthinkable  Many a prayer was lifted up asking that God would allow Matthew to be at Poppy’s birth. 

When I was admitted back into the hospital, Matthew and I discussed whether or not he should come to Nashville immediately, but we were assured that I was just being monitored.  Matthew was taking care of our kids and holding down two jobs, so while my preference would have been that he was with me for every step of this process, the reality was that he had a much needed job at home.  Given that I was only being monitored, we felt that it was reasonable that he should stay in Oklahoma until the alert level was heightened.  He had been planning to come see me that weekend anyways, so we planned to assess then how things were going.

My mother in law, Cheryl, was SO sweet.  I cried in the dr’s office, finding out that I’d have to be readmitted with one big thought in mind- Matthew and the kids were supposed to be coming from Tulsa that weekend and we’d planned lots of Easter activities.  Cheryl quickly and without hesitation said that EVERY activity we’d planned to do at home, we could modify to do in the hospital, including preparing a pastel tye dye cake and doing an Easter egg hunt.  And so on Wednesday, the second night of my readmission hospital stay, and Cheryl brought a HUGE basket of eggs and we stuffed them with Easter candy.  

She also happened to bring up dinner and breakfast items for the next day so that I could achieve my goal of “longest hospital stay with no hospital food”.  I had been reassigned to the second largest room on the floor (after a short stay on the second SMALLEST room on the floor that was also right next to the helocopter landing pad, to which Hospital Princess Jordan texted Dr. C. and said “no, no, a thousand times no!”). When I went to bed on Wednesday night, I had the feeling that I was just settling in for a nice, long hospital stay. 

But Poppy had other plans.  And like nearly everything else in this pregnancy, things took a different turn.  I woke up around 3:45 AM on Thursday morning with bleeding.  The next few hours became a blur of fetal heart monitoring, blood tests, and hospital staff in and out of my room, trying to determine how big of a deal it was.  It was still unclear how concerning this should be. At 4:45, I called Matthew at the fire station, to tell him he might want to get on the road.  The trip from Tulsa to Nashville is around 9- 10 hours, so I felt sure that we could hold off until that afternoon. 

There are many songs on the “Jordan and Poppy: Fetal Surgery and Beyond” sound track; many songs that I will forever tie to a part of our journey, a specific moment from God, or a word that I clung to.  In those wee hours of the morning on April 2^nd, one of those songs was Matt Maher’s “I Need You”.  I clearly wasn’t going to back to sleep, so as I tried to relax and get comfortable, I pulled up YouTube video and let the words pour over me:

“…without you, I fall apart, you’re the one that guides my heart

I need you, oh I need you.  Every hour I need you. 

My one Defense, My righteousness, Oh God, How I need you.”

Another song on the soundtrack from that night was a little song I sang to Poppy just a few minutes later.  I have sung this song to all three of my kids during their time when they were living in my tummy,  and it’s a song that I will always link back to being pregnant- “All I do the whole day through is dream of you” (Thank you “Singing in the Rain” and Michael Buble!)  I have recollections in all three of my pregnancies of singing this song to my little growing babies, lovingly tapping my belly and wishing that they knew how much they were loved.  Perhaps God brought this song to mind on that night as a little farewell rendition in my last few hours of being pregnant with Poppy.  I don’t know, but as I lay there in my hospital bed, singing to the rhythm of Poppy’s heart rate coming through the fetal heart monitor, I sang it one last time to a baby in my tummy. 

“All I do the whole day through is dream of you,

with the dawn I still go on dreaming of you,

You’re every thought, you’re everything,

You’re every song I’ll ever sing.

Summer, winter, Autumn and spring….”

Within about 2 minutes of finishing that song, my water broke and we were off the races. 

The next few hours were even more of a flurry.  My mother in law came up to the hospital.  Matthew raced home from the fire station where my mom, who was staying with the kids that night, got them up and was packing for them to head to Nashville.  My doctor came up to the hospital.  Matthew was on his way out of town when my father-in-law called with a booked flight on a flight that would get him  into Nashville at 1:30.  Whew.  Surely we could hold on until 1:30.  I looked at the clock every minute hoping my body could pause, but that the clock could speed up.

At 8:15 AM, they wheeled in an ultrasound machine.  My 27^th ultrasound of my pregnancy.  They were going to decide how Poppy was reacting to not having any fluid around her.  It was a pretty lighthearted screening.  The same Sonographer that had done nearly every other ultrasound was there along with my usual team.  I reminded them- as I had EVERY person that walked in to the room at least a dozen times, that Matthew was on his way.  We HAD to hold this baby off until at least 1:30 PM. 

By 8:30, the ultrasound was complete and the Sonographer had kept the same poker face she’d had with nearly every other ultrasound she’d performed for me.  She stepped out to consult with the doctors.  A Neonatologist came in to prepare me for what it would be like to have a nearly 33 week old baby in the NICU.  She talked to me for a few minutes, but I couldn’t tell you a single word that she said.  The only thing I remember about our conversation was how big her eyes got and how fast she bolted away from my bed when she saw my 2^nd doctor, the Maternal Fetal Center Director, walk into the room.  The message was -

“We’ve come too far to take any more risks, we need to have the baby.  Now.”

I remember tears and adrenaline- not in a panicky way, but in a "I'm going to have a baby in the next few minutes and it really isn't going the way that I thought it would, but it's all going to be okay" kind of way. I called Matthew, who by that time was at the airport, waiting to board his flight.  It had actually been delayed by about 30 minutes.  I told him to get out of line and that we were having a baby right then!  A delay that only minutes before had been an annoyance was now a blessing, since he could at least see the birth by a video call.  As I was on the phone, they were pulling up the brakes to my bed and trying to put a surgical gown on me.  Cheryl was being placed in a surgical Hazmat-like suit and was hurredly trying to coordinate who would take pictures, who would call Matthew, etc.

The wheeled me down the hall to surgery.  I swear I could hear “Rudy”-like music in the background, like it was the climactic part of a movie I was taking in all of the key moments that led to this one, shining second.  I got in the OR- super scary and sterile.  All of my child bearing days, I have dreaded getting an epidural.  At least when it happened during my fetal surgery, I was high on Versed.  Not this time.  The Anesthesiologist asked me to tell him what my name and date of birth was.  I remember thinking “Why do they have to ask such hard questions right before a C-section!!”  Apparently, I passed the test and they stuck me in the spine. Not as bad as I’d feared for 5 years!  Whew.

I remember the doctor yelling out “we’ve cut!” (ew!) and my mother in law hurredly taking her place by my head with my husband on a Google Hangouts call watching from the Tulsa Airport Military lounge.  We later learned that there is no way that a phone should have had the connection that we did in order to sustain a video call, but for once in the history of Hangouts calls, the connection was perfect. 

I heard Dr. B say “Today is Poppy’s birthday!” and about 100 pounds of pressure and a minute later, I saw this most precious face held up in the window of my surgical curtain.  It was the face of the little girl that we’d prayed for all of this time.  The face of what has been our greatest fear and now greatest miracle of our lives.  The face of our daughter.  She was born. 

They held her up and I saw her sweet little lips purse, exasperated by the fact that her dark nap had been disturbed, and she exhaled the most gorgeous little baby cry anyone has ever heard.  Dr. C called out to me “do you love her like pigs love mud, Jordan?”  The answer was undoubtedly yes!

After much deliberation, (and two days after she was born- come on, she was born a month early, people!) we named our baby girl Gabrielle Poppy Cox.  Gabrielle means “God is my strength”- something we hope is intrinsic to her life, that she will know and rely on his strength.  And the middle name Poppy…it’s just so her!  We had picked the name Poppy to call our baby in-utero, as we’ve done with all of our babies, without the intention that it would ever be her real name.  However it won us over with its happy, spunky and strong imagery.  We love the visual of poppy flowers, which are pretty, yet hearty.  

My favorite part of her name; however, was the completely unintended and unforeseen shrug off of any predictions that have come her way.  Poppycock is a British saying that means nonsense or rubbish.  I feel like that is what her little life has done so far- been a reminder that God is stronger and bigger than statistics.  It reminds us that the “as long as” of life aren’t limiting to God; that His strength can make us braver than our man-made or self-made limitations.  We do not, by any means, think that she is going to live a life unscathed by spina bifida.  We are very prepared for and aware of the fact that she will have more than her fair share of things to overcome, but we hope that she can do so with a spirit of strength in the Lord and a little bit of spunky flare that says “Poppy Cox!” to the limitations placed on her.

And that’s the story of Poppy’s Birth day.  She was born at 9:07 AM with about 20 minutes lead time.  In fact, when Dr. C. came to visit me later on that morning to see how I was doing post-surgery, she said “I better go move my car”- she’d had to park in emergency parking to get to the C- section on time!   

I don’t know that I’ll ever completely understand why Matthew couldn’t have been at Poppy’s birth.  Would it have completely changed God’s vast plan to have allowed Matthew to be by my side and see his baby be born?  I kind of don’t think so, but I also have come to trust God’s heart a little bit more through this process.  Maybe God will use it somehow in our lives, or maybe that’s just how it was.  But I do know that it didn’t crush me, it didn’t destroy us.  This thing that I thought I could somehow not ever endure is yet another thing that, by God’s grace, we have overcome. 

And we know that God is bigger than and His grace is stronger than any of our "as long as..."  We have a physical, forever reminder of God's faithfulness and provision. 

Happy Birth Day to our Poppy Girl.  May she someday come to know and love her story.  May her life point others to Christ.  May she be a good leader, but a great follower of Christ.  May her strength always be found in the Lord.  

Missing Spring. And other things that kind of sting.

After our fetal surgery, Poppy and I had the long responsibility of recovering.  Poppy’s spine, skin and back needed to heal. I had a large external incision that needed to heal, in addition to an internal uterine incision that had the job of healing while growing to accommodate a baby inside for (hopefully) 12 more weeks.  Because of that, I was put on strict bed rest.  Nothing physically strenuous and I could only be standing/sitting for 10 minutes out of every hour.  Ultrasounds had to be performed every week to check on mine and baby’s growth, so the only “outing” that I was able to go on was to my weekly dr’s appointment. There I had to be driven up to the door and then transported by wheel chair through the hospital.  The worst part is that I had to do all of this bed resting in Nashville; away from my family, friends and home.  Not the way I saw this pregnancy going, for sure.

(If you can't read it, my cup says "someone in Oklahoma loves me".  Thanks to my sister Molly.  I feel certain that she spoke on several others behalf.) 

Throughout the bed rest process, I battled with myself a little with two different schools of thought.  The first one realizes that what we’re going through- fetal surgery, bed rest for the remainder of the pregnancy, living 600 miles away from my family for 3 months, knowing that our baby will be born with unique challenges that will be life-long with a varying degree of severity- and the list goes on- is a super big deal.  This is not normal.  This is life changing big.  Some days I feel that there’s a certain room for grief, emotions that aren’t altogether happy, and overall like we’ve just been through and are still going through the storm of our lives.  Sometimes I get sad that I don’t get be with my husband throughout the last half of my pregnancy.  I feel sad that I don’t get to take maternity pictures in a field wearing a chevron dress.  I feel sad that when the stranger at the hospital asks my 4 year old what happens when mommies are pregnant he says “sometimes mommies need to have a lot of surgery when they’re having a baby.”  

But then another me chimes in and feels selfish for feeling sad or confused or disappointed.  I feel guilty because I know that there are people in the world that would give anything to have a baby- even if it means bed rest, or surgery or a “not normal” diagnosis.  There are people that have carried their babies 8 weeks, 3 months or even 9 months, only to not be able to take them home.  There are people that have to be away from their families for 3 months and even longer for reasons that do not end happily- cancer, deployment, another terrible diagnosis, etc.  I appreciate that I get to come home with a baby girl that will bring joy to our lives and complete our family.  I fully appreciate that for every negative I can think of about this process, there is a complete and far greater reason for gratitude. 

I also acknowledge and completely realize that when you hear “bed rest”, the average person thinks “oh yeah, that must be torture- sitting around all day, watching HGTV and Downton Abbey, with no responsibilities while someone waits on you hand and foot”.  Understood.  And I fully expect that someday in a few months I will be WISHING to be back on bed rest.  I will grant you that the first 48 hours feels pretty nice.  There are certainly far worse things in life than being ordered by your doctor to “build a fat layer” and “drink more milkshakes”(not lying, those were my real dr’s orders)   HOWEVER, I also have to point out that for all of the good parts of bed rest, there are a few negatives.  First of all, I am used to being an adult with free will.  Bed rest means you can’t drive.  You can’t cook what you want for dinner.  You can’t decide you want to take a walk on a beautiful day.  You can’t see a commercial for something and decide that you’ll go buy it.  You can’t realize that you’re in the music capitol of the US and go see a concert…or a movie…or the freezer section of a convenience store.  My birthday festivities included a trip to the grocery store where I actually planned days in advance and looked forward to sitting in the car while my mother in law shopped for groceries.  Being on bed rest means that you’re faced with having conversations in your head (and I’m not kidding) that go like this:

Responsible me:  I need my chapstick but it’s on my bedside table and is out of arms length from me.  I should probably call my mother in law in to come in and hand it to me. 

Super Dare Devil me:  Nope- I think I’m just going to reach and stretch and grab it myself.  How bad can one stretch be, right?

Responsible me:  But think of the shift in gravity and the stress it puts on my uterus!  Plus, I’m not just doing it once.  If I do this once or twice every day, all of that bending and stretching and gravity will add up and I’ll go into premature labor!

Super Dare Devil me:  Oh come on.  I’m just reaching for chapstick.   It’s not like you’re doing something COMPLETELY careless like walking to the mailbox!

Responsible me:  I know I’ve left my kids and husband and house and job and family back at home, but if I REALLY loved my baby, I’d not reach for my chapstick.  What kind of mother does that?

Or this little gem of a scenario; imagine waking up in the morning with a hankering for a Starbucks Frappuccino (as I wake up so many mornings hankering for).  You either have to:

A)     Not have it because you can’t, of your own accord, go get it

B)    Ask someone to take you.  But this someone has already waited on you hand and foot all day, is cooking your dinner, has plunged your toilet, picks up all of the ice that you drop on the floor but aren’t allowed to pick up.  And your’re going to ask for yet ANOTHER favor?! (keep in mind that “I’m sorry” and “I feel bad” are my two go-to reactions) OR

C)  Jedi mind trick someone into thinking that THEY want a frappuccino so that they’ll want to go get one and invite you along for the ride.  

Entirely too complicated. 
Fortunately for me, I have a mother in law and caretaker that is equal parts fun, frappuccino loving and organized, so for those reasons, I rarely felt deprived.

On a more serious note though, bed rest also means experiencing my children through Skype.  

I missed being there in person for so many things.  Their last night in the toddler beds that they’ve slept in since they were babies.  Sleeping in their new bunk beds and sharing a room for the first time.  I watched Harper’s first gymnastics class from a Google Hangouts call while sitting in my hospital bed- I saw the whole class, but she doesn’t know that.  When my kids came to visit me for a week, I had to tell them that I couldn’t pick them up or walk up the stairs to their room to sing them goodnight.  I would have never imagined a scenario in my life where I would be away from my kids for 3 months.  While I know that the ending is supposed to be happy, it still does not feel like something “good moms” do.  It feels like picking one baby to care for over the other two.

Bed rest also meant ultrasounds.  And waiting.  And what if’s.  Throughout my pregnancy, I had 27 ultrasounds.  Twenty-seven.  First of all, ouch!- especially when you have a 13 inch incision that is fresh.  I believe that I’ll forevermore have a fear of ultrasound jelly.  But more than that, the minutia of what they can see and tell you in those ultrasounds and what you have to worry about is exhausting.  I never cared about the size of my other kids’ ventricles- I’m not sure that I even paid any attention to where they were in their bodies; however with this baby, the slightest tenth of a millimeter increase makes me catch my breath.  Poppy’s right leg was “fixed” or never moved in utero.  They’d hold the Doppler over her legs to see them move for minutes at a time.  In those moments, all of my maternal energies were attempting to will Poppy to move her sweet little legs, but to no avail.

I’d leave the appointment with the weight of wondering if my baby will walk or if she will develop hydrocephalus or so many other things that you would never want to have to worry about for your baby.  I know the Baptist thing to do is to say something like “well, just let go and let God”, but what does that even mean?  We were in the process of making the hugest sacrifice we could possibly make for our baby and to feel like, on some days, it might not be paying off is heart wrenching. Perhaps one of the most difficult emotions of my pregnancy was feeling scared of the baby that we were waiting for.  

When I was first released from the hospital, there was a big snow storm.  Cheryl, Poppy and I were safe in our little Nashville cottage, hunkered down, just like the rest of Nashville.  It didn’t feel so bad, I suppose, because everyone else was in the same situation.  

But my angst and discontent with bed rest got more difficult once the weather got nice.  Beautiful spring days that are the kind of days you wait all year for, were days that I had to observe from a window.  That’s when the boredom set in.  (I recall a lot of selfies initiated by me via text message.  My poor friends).  

It was those days that I feel like I realized all that I was missing out on life.  There were people that got to get out of their houses and enjoy the spring.  I also realized that I was missing out on what my expectations had been.  When I got pregnant and even when we discussed having a third baby, I expected that I’d get to enjoy 9 full months of pregnancy bliss, be able to let my kids touch and kiss my belly every night, fall asleep next to a husband that would rub my back and tell me how “glowing” I was, set up a nursery, take pictures, and have a beautiful natural labor at full term with, what I expected to be, a completely healthy, normal baby. But none of those things were my reality.   

Perhaps it will always sting a little bit that I didn’t get what I expected.  But I don’t think the sting diminishes the gratitude that I have for what I did get.  I am reminded that we were told that the hope that we have in Christ "does not disappoint", so our waiting done in Him isn't in vain.  And I'm realizing that many times our hope in Christ doesn't disappoint in a way that we can see tangibly in the here and now, but sometimes it  "doesn't disappoint" in an altogether more eternal way that in a short term perspective does seem disappointing.

Did God “short change” me?
No.  

Do I have less special of a story to tell than if I’d had my ideal “husband coached child birth” experience, or a whole pregnancy at home or a photo shoot full of chevron maternity dresses?
No.  

I have a different story to tell, but not a lesser story.

Chapter 3: I Lay Me Down and Slept and Awakened, for the Lord Sustained Me

DISCLAIMER:  This post contains some pretty gnarly pictures of my tummy scar.  If it's difficult for you to see or if you will not be able to have a conversation with me after I return home without thinking of my gnarly scar, please don't continue scrolling down. 

It was the second day after our surgery that the realization hit me- I didn’t need surgery. There was nothing wrong with me.   I had walked into the hospital on February 3^rd as a completely healthy, pregnant mama.  Yet two days after my surgery, I had a 13 inch incision down my belly, they were thrilled beyond reasonableness that I could sit on the edge of my bed and I couldn’t lift myself up from a laying position with the help of Matthew, a nurse, or my mom.  Most disturbing and upsetting of all, I’d had to take a sponge bath.  Sick out. 

Going back a few days, we called to accept our surgery on Wednesday, the 28^th of January.  At that time, I assumed I’d be back home in Oklahoma to be on bed rest after three weeks of recovery in Nashville and that, at some point in the pregnancy, we’d travel back to deliver our baby at Vanderbilt.  However, the Friday before Matthew and I were supposed to leave for Nashville, I was already scurrying around my house like a crazy lady- I’d had my last day at my office the day before, leaving the best job I’ve ever had, made up of the best people I’ve ever known, knowing that I’d not be able to return after all of this to the same job under the same conditions.  As I ran around like a crazy lady on Friday, knowing it was the last couple of days for me to be an able-bodied mother for several months- I got a call.  Not from a doctor, but from a social worker saying she was calling to see if we needed her to secure us an apartment for the 3 months that I’d be living in Nashville.  3 months?!  After we unraveled all of the information, it had been decided that given the distance we lived from Nashville, the availability of resources to us in the event of an emergency and a slew of other factors, they could only allow us to have surgery if I agreed to stay and live in Nashville until delivery. 

The idea that I had cried and cried only days before over leaving my children for 3 weeks seemed completely insignificant compared to the prospect of 3 months.  What mother does that?  Who leaves their babies for 3 months?  And what about all of the logistics?  Where would I live?  Who would live with me?  Who would take care of our kids while Matthew worked?  All of these questions would have quickly made up our minds with a resounding no for surgery only days before, but at this point, we were committed.  We had it in our hearts and minds that we were giving this surgery to Poppy.  

God worked it out.  Within an hour, Matthew’s mom had committed to leaving her life in Santa Fe- leaving behind all of her hobbies, new husband, new home, everything to come sit with me for 3 months.  My mom generously offered to watch our kids every night that Matthew was at the fire station- every third night. The pace at which people moved to make our lives work in this was really astounding. 

On Saturday we spent our “last day” as a family of 4 under “real-ish” conditions.  I got to cook a meal for my family- we made a family favorite- french toast.   I could pick up my kids for the last time and I actively played with them for the last time until after our baby was born.  We went to the Children's Learning Museum in north Tulsa- I went through the packing tape tunnel more times than I can count and each time remember thinking what a gift it was to be able to do. 

Matthew and I got on a plane on Sunday, January 31^st- I said good bye to my house, my home, my whole family at the airport…knowing when I returned it would be at least three months later and I’d come home with a baby in my arms.  Only a month prior, there is no way that even a fraction of this scenario could have possibly been on our radars. 

So the day of surgery came- kind of a blur- the range of fears in my head went from the fear of getting an epidural (in previous pregnancies, I chose to ensure a total of 27 ½ hours of labor as opposed to being stuck in the spine by one little needle- terrifying) to coming out of surgery without my baby.  In some ways, the insignificant worries were better to focus on so that we didn’t have think about the magnitude of what was really out there.  I just kept telling myself that all I had to do was get to the hospital, get an IV and lay down for a nap- I didn’t have to worry about putting myself to sleep, or keeping myself alive, or the fact that they’d take my uterus outside of my body and rest it on my lap or whether or not they’d be able to keep my baby alive or if the repair on her back would be done properly. “Be still and know that I am God” has never had a more clear meaning.  And sleep I did- apparently this surgery has the same amount of anesthesia as they give a transplant patient- one of the greatest amounts of any surgery.  Matthew and other family members, both those at the hospital and those waiting by their phones at home, had the harder part- to wait the 2 ½ to 3 hours for us to come back.  My mom said that after I was taken out of the room, Matthew stood in the space where my bed had been wheeled away from for the whole several hours that I was in surgery, not sitting down- just waiting for his wife and his baby to come back to him. 

The first thing I remember after coming out of surgery was Matthew standing by my head repeating everything the doctors had told him- the repair had been done “brilliantly” they “had high hopes for this baby”. Most of all, I heard was that our baby was still there. She was alive.  God had brought us both through surgery.  I just remember feeling the sides of my tummy, knowing that she was still there.  I think I said about a million times “I’m still pregnant, I’m still pregnant.”  Our little girl was still there.  Poppy had handled everything like the fierce little lady that she is and she was still alive.  We still got to have our little girl. 

Far less profoundly due to my post-anesthesia state, and thanks to my mother who sat quietly in the corner, writing down everything that was said, I apparently also asked the world renowned Anesthesiologist that had taken care of me during surgery if he had seen my boobs- yes, I asked this right in front of my mother and husband- and also asked if someone from Duck Dynasty was in the room.  I also promised that we’d take Poppy to Disney World- I don’t intend to go back on that one. 

And so after two days or so, I realized- I didn’t need surgery.  There had been nothing wrong with me.  This was all done for this tiny little baby, probably weighing less than 2 lbs.  By all selfish standards, she has never done anything for me.  Some people might treat our story as a testament to the sanctity of life and it CERTAINLY is- they gave my baby anesthesia, she responded to pain and had to recover from a surgery, more than 20 medical professionals scrubbed into a surgery to take care of her- not me. I was fine, so for sure, those are all testaments to how precious life is and that the life they were improving the quality of had already begun.  But the bigger take away that was left on my heart was a picture of salvation.  When we were helpless, Christ came to earth to endure scars and undergo completely unnecessary things so that WE could have life.  When I think of the love that I have for Poppy and I haven’t even seen her, I haven’t heard her cry, I don’t know if she’s a good sleeper or has brown hair or has a cute personality or if she’ll, in fact, have chubby cheeks, but I know that Matthew and I love her enough that we’d restructure our lives for three months, watch our loved ones restructure theirs, even allow myself to leave my other children for a time and take such dramatic medical measures.

I am NOT trying to compare myself to Jesus Christ- I really hope this post isn’t taken that way.  I don’t see myself as heroic because of this process and I know that ANY parent placed in this same situation would make the same choices we have, and if they wouldn’t it would be for completely unselfish and legitimate reasons.  The love between a parent and a child so profoundly displays the love that God has for us.  I could never have fathomed how much my heart could love until I met my son, and I experienced that same love again when I met my daughter.  I guess laying in a bed post-surgery, seeing a scar that feels ugly and irreversible and seeing the measures so many others, along with Matthew and I, were willing to take, helps me see and appreciate the love that Jesus has for me more profoundly. 

Sometimes it’s hard to imagine how Jesus could love us or we feel like we’ve heard it our whole lives and it’s sometimes a little bit cliché.  But it meant something new and different for me to experience that level of sacrifice for my baby and know that it doesn’t even scratch surface for the sacrifice that I know has been made for me.

And completely unlike salvation, I know that who Poppy is and who she will become will be far greater than someone else’s scars- she has her own scars and has had to exhibit her own strength to survive.  I hope that someday my scars and the scars that our family all bare from this process will tell her that we loved her before we ever knew her, that she has amazing worth that goes beyond reasonable measures, and that God was faithful to bring her through so much before she even took a breath in this world.  I hope that it will give her confidence and that it will also draw her to the God who created her and loved her even more than we can imagine- but that we can imagine even more closely than we used to be able.

Chapter 2: He Gently Leads Those that Have Young

Two things that have to be said after my Chapter 1 post:

First, spina bifida is not the most devastating diagnosis that can be had.  We didn’t realize this at first.   I can’t imagine that anyone ever gets pregnant HOPING that their child will have a disability or a handicap that will impact their entire life; however in the days and hours that followed our original diagnosis, this heavy, burdensome monster of a lot in life became something far less devastating.  True, my child is not here yet and I have no idea what she will be like when she does get here, but the overall prognosis of spina bifida is not the most devastating thing that a person can hear.  Our lives will probably be more complicated than most- they might involve things like leg braces and urologists and physical therapy and way, way more dr’s appointments than I care to imagine at this point in my life, but I fully expect that our lives will also involve innumerable hugs and kisses, another spunky Cox child that is both sweet and stubborn, and I am PRAYING for some chubby cheeks for this sweet baby- on both ends J.  We lived in a place for a number of hours before we received clear answers where we didn’t even know if our baby would be even born, so by comparison this is a huge gift. 

The second thing that you all need to know is that God has sovereignty over PBS show scheduling.  Yes, He does.  The day after we learned about our little girl, Matthew and I both stayed home from work with Gavin and Harper.  There were a lot of people to call and, even at this fresh, early stage, a lot of decisions that had to be made.  I came out of our bedroom after a phone call to see Matthew, Gavin, and Harper all sitting on the couch watching “Daniel Tiger’s Neighborhood”- a favorite in our house. Tears were streaming down Matthew’s face.  I sat down with them to see that the episode that was on showed a little girl coming to play with the regular Daniel Tiger crew, only she had braces on her legs and wore crutches on her wrists.  

The theme for the days show was “In some ways we are different, but in so many ways, we are the same”.   (True fans of the show just sang that line rather than reading it).  The end of the episode showed two real life brothers playing in the park; one of them could walk normally, the other had little braces on his legs.  His mom had to lift him onto the swing, but he laughed and played alongside his brother.  Even at that fresh and early stage, with our news being less than 24 hours old, seeing that happy little boy on our television screen gave us both a hope, a picture of a life of challenges, yet happiness that might resemble ours. 

There are lots of details in this next chapter of our story, some of which are probably more boring than others, but the biggest directional detail was that Matthew and I had to decide if we wanted and would be candidates for a fairly new in-utero surgery for our baby.  In this surgery they would actually go inside of me and perform surgery on our baby to close her back.  Still pregnant.  Crazy.  Even now (spoiler alert- we did it), it is crazy to think that I’m 31 weeks pregnant, but our baby is recovering from a surgery that happened 7 weeks ago.  A doctor has touched my baby…technically my baby has been delivered and then put back inside of me.  Pretty miraculously crazy.

We knew from our first appointment that this was potentially an option for us, but there were several obstacles.  First, only 10-15 hospitals in the country even perform this surgery.  While it’s statistically proven as a “standard of care”, it’s still fairly controversial because this is the first and only intra-uterine surgery currently done where the alternative for the baby is not fatal.  Most babies that undergo intra-uterine surgery for other diagnoses have a condition that they will likely die from if intervention does not occur; however in the case of spina bifida, it is intended only to improve the quality of life after the baby is born and reduce risks of common spina bifida complications.  While this has proven successful, it still is accepting a huge amount of risk- fetal death, premature birth, risks to the mother that wouldn’t exist in a normal pregnancy.  To date there have only been less than 600 fetal surgeries related to spina bifida in the entire world.   

Another obstacle specific to us was that Poppy had two holes in her heart.  For a baby to be a candidate for the surgery, doctors do not want the baby to have any other “anomaly” that might further complicate the surgery.  We were told that the two holes in her heart weren’t serious under normal conditions, but dr’s would be hesitant to accept a baby with a condition like this.  One of the very first things that we asked people to pray for was not that the dr’s would be open to operating on our baby with two holes in her heart, but that God would completely close the two holes so that it wasn’t even a factor for them to consider.

Matthew and I had to quickly decide if we wanted to be evaluated by the Texas Memorial Hermann Children’s hospital in Houston for the surgery, the center that our Tulsa doctor had the closest connection with.  We set up a 3-day evaluation trip for the following week.  The surgery had to be completed by 26 weeks gestation and at the time I was 21 weeks pregnant, so we knew that we only had 5 weeks to explore all of the surgery’s options, be accepted, and have the surgery done; otherwise we would lose our window of time.  In our initial conversations with Houston, things sounded positive, but as they reiterated the “red flags” of our case, Matthew and I felt compelled to have a 2^nd opinion set up immediately.  Matthew, who had researched the surgery more broadly (I, to this day, haven’t Googled a single thing related to spina bifida) said that Vanderbilt in Nashville was one of the leaders in developing and researching this specific surgery. 

We began to explore setting up a second opinion at Vanderbilt, hoping that if perhaps Houston said no, Vanderbilt might be more “liberal” with their criteria since they were more experienced.  Our Tulsa doctor facilitated this as well and the second to last week in January took Matthew and I on a whirl wind medical trip to Houston and Nashville. 

Our first stop in Houston was a day long evaluation of Poppy and I involving multiple ultrasounds, a fetal echocardiogram and a fetal MRI (which- heads up- means as Poppy’s mom, I had to go too!)  The amount of nerves and fears and fragility that we walked into that clinic with on January 19^th was overwhelming.  Any mother and father that have sat in a room where a doctor gave life changing news can likely attest to this new feeling that is now present in any other appointment, ultrasound, call from a dr that follows.  I’m still waiting for it to go away.   It’s like your innocence of belief in normal outcomes has been lost and any realm of possibilities of badness is suddenly open to you.  Where ultrasounds used to bring a sense of excitement to see and experience our baby, now I waited to see what else could be wrong.  What more could they find out? 

However, God showed us a real miracle on January 19^th.  When the cardiologist read Poppy’s echocardiogram, there was no evidence of holes in her heart.  She couldn’t see them.  Holes that were confirmed by two ultrasounds in Tulsa only 13 days previously were now gone.  I know our God is a God who hears.  I suppose the cynic in me could say “well if He could heal her heart, why couldn’t He just close up her spine.”  But rather, I believe that God gave us this miracle to let us know that we weren’t going through all of this on accident.  He didn’t forget about Poppy. He hadn’t overlooked her on Week 4 of her fetal development when her little spine was closing.  He made her fearfully and wonderfully.  He had His hand on her life, on her spine, on her heart.  The Cardiologist in Nashville confirmed the same thing- her heart looked perfect.

Super LONG story short- we were denied surgery in Houston. Her case wasn’t bad enough to assume all of the associated risks, they felt.  We left Thursday evening for Nashville believing wholeheartedly that they’d say the same thing; however Friday after a similar evaluation process at Vanderbilt we were told, much to our surprise, that they thought Poppy and I were good candidates for fetal surgery. 

One paragraph could not even hold the agony of making the decision to accept surgery for Poppy.  Looking back, I can see that God answered every prayer, led us completely on our own to pursue opportunities at Vanderbilt, God had even closed the holes in her heart to make her a candidate for surgery; however in those next few days of deciding whether or not to follow through with the surgery, all Matthew and I felt was the weight of the outcomes of this surgery falling on us.  There was a sense of peace knowing that God had created her the way she was- after some wrestling, I had come to realize that Matthew and I hadn’t done something to cause her spina bifida; however if we chose to have the surgery and something bad were to happen, WE were the ones that made that choice.  There was also the choice to accept giving up the rest of my pregnancy to bed rest, not being able to lift, bathe, play with my children, see my friends, go anywhere, leave my job.  I also knew that I’d have to stay in Nashville for 3 weeks after the surgery.  I cried and cried at the thought of not seeing my children for 3 whole weeks.  And what if Poppy couldn’t sustain the surgery?  What if my body couldn’t sustain the surgery or the recovery?  What if we actually made things worse with the myriad of negative possibilities that we would open ourselves up to?  How could two kids be expected to make that decision for their own child?  I secretly hoped Vanderbilt would call and decline the surgery and take the opportunity off of the table. 

Tuesday morning- 24 hours before we had to give our final decision to Vanderbilt about whether we’d have surgery 6 days later- God led me to these verses:

“But you, O Lord, are a shield around me. 

You’re my glory and the Lifter of my head…

I lie down and sleep and awake again, because the Lord sustains me.”

Psalm 3:3 & 5

This surgery would close our daughter’s back to release the pressure that was pulling down her back and her spine and brain.  One of the intended outcomes was that it would release the back of her brain from being pulled down and flattened, to lift that part of her head back up into its original shape and place.  God can do that.  And God could also sustain Poppy and I while we slept under the hand of many doctors and allow us to awake again. 

My last thought on this chapter of our story was that this was the baby that we always loved.  We learned that the spine forms in the 4^th week of pregnancy. I found out that Poppy was coming into our lives during that 4^th week.  Likely the day that I saw two blue life-changing lines, her little spine was already in place.  Maybe not, I don’t know, but this was always the Baby #3 that God had for the Cox family.

I remember the night I felt her move for the first time.  I had just put the kids to bed and Matthew was at the fire station- it was Christmas time.  I felt the tiny little flutter of a life inside.  I remember the overwhelming feeling of gratitude, of “if I could just capture this moment and remember it forever”.  You can’t take a picture of what that feels like, so I took a picture so that I would remember that moment.  Just a moment of maternal bliss over the baby God had given us.

And that baby was Poppy.  This Poppy.  It always has been. Not a Poppy made differently or “normally”, but this very little girl made exactly how she is. 

Photo credit to my sis, Katie Goodson, for awesome pics 2 and 3.  

Thank you for doing a crash maternity pic session with 12 hours notice.  Love you!