Thursday, February 4, 2016

A Tale of Two Scars

My favorite things about me are mistakes. 

When my oldest daughter Harper was born, we were beyond thrilled to see that she has a dimple.  Just one.  A precious little dimple on her right check.  I remember the first time we saw it.  She had just been born and her temperature was a little low.  They told me that she needed to be skin to skin on me for an hour to help her warm up.  I was thrilled but I also couldn’t wait to explore our new person!  As I held her and Matthew went to tell everyone that “mother and baby are doing fine”, my mom was doing the “look over” of Harper and giving me a full report.  I remember she gasped and said “Jordan!  She has a dimple!”  We fell in love with it instantly.
Harper and her dimple
I was momentarily disillusioned when I returned to work a few weeks later and a pragmatic, ole Engineer informed me that a dimple is actually a tear in the muscle.  A mistake.  Simply put, if things were perfect, it wouldn’t be there. 

Which brings me to my two favorite things about myself.  Thing number 1: my freckles.  Spots.  Technically, damaged melanin.  But whatevs- I like them.  They give me character, a little splash of color on my otherwise pasty, white skin.  Truth be told, they aren’t really supposed to be there, but man, would I be boring without them.  

Thing number 2: my scar.  My “Poppy line”, as we’ve referred to it for nearly a year now.  At this time one year and one day ago, it wasn’t there.  Although my tummy was far from perfect, it was not riddled with a long scar.  My favorite thing about me was made by a scalpel (and actually by a world renowned plastic surgeon, so doesn’t that sound fancy!)  It was made as an ends to a means.  In order to help my daughter, they needed to get “me” out of the way. 

It took me a while to like it.  In fact for several months I hated it.  With the speed necessary to make the decision to offer surgery to Poppy, we didn’t have time to think through the fact that I’d have a scar for the rest of my life.  It wouldn’t have changed our minds, but it would have been something to have processed prior to one day post surgery, as I watched them peel a bandage off my pregnant tummy to view  a long, permanent line, held together with surgical glue and 31 staples.  “It won’t always look that pronounced” they promised.  Just one more thing to grieve, I remember thinking. 

But a year later, I love it.  It’s my Poppy line!!  It’s purpose in my life goes far beyond the aesthetics of what my eye beholds when I see it.  It’s a line that forever connects me with my daughter,  the daughter that was born with stitches and her own scar.  She was born, already recovering from a procedure that she’d had 8 weeks prior.  Back when she was only about 8 inches long, weighing maybe a little over one pound and had skin that was the consistency of cellophane.  The smallest portion of her lower back was delivered into the world and had 27 minutes of work to place nerves back into her body and to close an opening that shouldn’t have been there.  In fact, the opening is called her “defect”.  And what remains of her “defect” is a precious little scar and a lifetime of overcoming damage to nerves that didn’t grow in the right spot. 

We have kind of a matching scar set, which I think it pretty cool.  It reminds me of the biggest, most important, scariest decision of our lives and a day that I was actually maybe kind of a little bit brave amid a lifetime of mostly mediocre. 

My scar reminds me of a cold and somber morning, waking up at the Holiday Inn on West End in Nashville, TN.  No need to put on make up- they told me not even to wear deodorant.  I was glad I was going to be taking a nice long nap in just a couple of hours because not wearing deodorant is REALLY not my jam.  Matthew and I met my mom and went via taxi to the hospital.  It was only a few blocks, but we had to be there at 5:45 and we also had to take all of the belongings that I’d packed for the next 3 months of my life.  I remember getting out of the elevator on a floor that had clearly been designed and decorated back in the 1960’s.  It smelled like hospital and looked even worse.  Every inch we walked felt like a walk to the guillotine. 

I remember a weepy, pregnant mama in a hospital bed wearing a surgical gown and cap, sitting next to Matthew on the hospital bed.  One of the 5 Anesthesiologists that scrubbed in on my surgery came in to talk with me before surgery.  He said something like “a true hero doesn’t always feel brave. A true hero knows what the right thing to do is and does it even though they’re scared.  And today, you’re my hero.”  I know he probably says that to all of the Fetal Surgery moms, but that morning it felt like it was meant just for me.

That’s what I see when I look at my scar.  I see a day where I was stronger than I have ever had to be.   I see love, not just from me, but from Matthew who watched them wheel his wife and his baby down a long, white hallway.  He worked two jobs, held our life back in Oklahoma together and passed kids around like little hot potatoes to make our Nashville lives a possibility.  

I see patience from two siblings who could never have grasped what was going on, but simply trusted that we’d be home with a baby and we’d be family again.

I see family members and loved ones to who came together heroically on our behalf to make our lives work.  Our family bares scars that the eye can’t see, but are still sensitive places that are still healing- little hearts that every now and again remind me of the pain that Gavin and Harper went through to help bring their sister into this world.

When I look at my scar, I also see the power of an all knowing, all loving God who held an incision together for 8 more weeks and simultaneously wove and grew a baby - not just body parts, but He wove spunk, and resilience, and happiness, and a spark that I hope is there for Poppy’s whole life. 

Eight weeks later, at 32 weeks and 6 days gestation, our little woven together Poppy was born with stitches, a story and a smile.  She smiled in the operating room as the nurses showed her to me.  And her little 4 lb, 2 oz body held onto life and all that it hold for her.

I hope Poppy embraces and loves those things about her that are technically imperfections.  She will overcome a lot in her life that to the eye may appear to be a flaw, but represent unimaginable strength.  To us, she is thoroughly perfect.  To us, she embodies God’s protection in our lives, God’s provision for our needs, His shield around us, and a head that He lifted (Psalm 3:5)

On Poppy’s first Butt Day, my prayer for Poppy is that when the world sees her imperfections, they would see Christ- a Christ that heals, redeems, and gives purpose. And that Poppy's favorite things about herself, whatever they are someday, would be many and that her spirit and spark would not be dulled by one moment of insecurity.  

 I’ll lay claim to the prayer of St. Patrick for our girl:

“Christ with me, Christ before me,
Christ behind me, Christ in me,
Christ beneath me, Christ above me,
Christ on my right, Christ on my left,
Christ when I lie down, Christ when I sit down,
Christ when I arise,
Christ in the heart of every man who thinks of me,
Christ in the mouth of everyone who speaks of me,
Christ in every eye that sees me,
Christ in every ear that hears me.”

Many, many thank you's to my wonderful friend, Emily Berglund from BeYOUtiful Photography who helped us tell our story in pictures.  

Tuesday, January 5, 2016

364 days ago

Tomorrow marks the one year anniversary of our littlest baby being diagnosed in utero with Spina Bifida. 364 days and nights have come and gone since our world changed forever.  One year ago I watched as a Doctor in a white coat entered a room he wasn’t supposed to be in to deliver news to Matthew and I that we never imagined we’d hear.  A diagnosis that I’d only ever heard of by name became almost a defining part of who we are.  We embarked on an involuntary adventure that will be ours for the rest of our lives. 

When I think of January 6, 2015, part of my mind goes to a black room, perfectly symbolic of the black hole that it felt our lives were falling into.  Only minutes before I’d been laughingly joking with my husband.  We had decided to keep our baby’s gender a secret, so we had naively closed our eyes through nearly the whole 20 week anatomy scan ultrasound.  I’d brought a list of names- both genders- for us to discuss while we waited.  We both planned to go back to work after our appointment- after our customary post-dr visit to Starbucks, of course.  But now we found ourselves in a specialist Doctor's office in the darkest room on the darkest day of our lives. 
This was the last picture taken on my phone before we heard our news- it was a list of all the names that we (and by we, I mean I) was wanting to discuss for Baby Cox #3.
I recall the list of things the Specialist pointed out that were wrong with our baby.  She kept going on and on.  It started to be too much.  I remember wanting to tell her she was being rude.  “Stop talking about my baby like that!”  I remember thinking.  It was a weird disconnect, like the baby being shown on the monitor wasn’t the baby that was inside of my body.  All of our dreams seemed to flash before our eyes.

I imagine the pre-Spina Bifida mom that went to bed on January 5, 2015 with a swollen pregnant belly and a carefree little head that laid to rest on her pillow.  
Nowhere on my horizon were words like chiari malfunction or fears like hydrocephalus or urostomies.  There was a nomenclature that I didn’t need to know about, costs that I didn’t need to count, a trip I didn’t know I needed to pack for, and a depth of faith that I hadn't ever had to tap into.

Every now and then my mind starts to wander into a place that I don’t like to go to- I imagine for just a few seconds what our lives might look like if Spina bifida never entered in.  It’s a fictitious world and a place that I really don’t find it useful to dwell in.  I venture to say that the non-Spina bifida Coxes wouldn’t have a little girl named Poppy.  We would have probably chosen Channing or Piper or Morgan - all lovely names, but certainly not ours.  We’d have had a baby in late May or early June via a lovely natural child birth.  Non-Spina Bifida Coxes wouldn’t have their hearts pulled ever towards Nashville and wouldn’t have a Physical Therapist or a Urologist or a Neurosurgeon on their Christmas card list.  Non-spina bifida Coxes might live in a different house, that was part of our tentative plan anyways, and they wouldn't have to worry about whether every member of their house would be able to climb stairs or need a wheel chair ramp, they'd have just bought a house.  Non-Spina Bifida Jordan had created a “to do list before baby comes” that makes me laugh every time I look at it.  Silly items like “clean out the garage” were on my radar- not “go have fetal surgery and live in Nashville for 3 months”. Non-Spina Bifida Jordan wouldn’t have vertical scar down her belly. Non-spina bifida baby Cox wouldn’t have had purple leg braces or a zip zac chair.  I usually stop myself there because anything else feels so far away and so unclear that it takes a big imagination and thoughts that just aren’t worth having.

I am so proud that this little innocent face didn’t have a clue what was being told to us on that day.  She was just being a fetus.  She was growing imperfectly and yet somehow perfectly, all at the same time.  I’m beyond grateful to God for the road that was laid before us on that day; some of it directed in a clinical fashion by a doctor and some of it laid out only by the grace and direction of God Himself who laid it on Matthew’s heart to research fetal surgery at Vanderbilt. (side note: The place we were referred to by our Specialist denied us and we only went to Vanderbilt because of the tug on Matthew’s heart to have a second opinion lined up)

A year ago on January 6th, a lot of dreams slipped away that have been replaced with new dreams. There are verses I've always quoted and known about that now have new, real meaning.  There are songs that I've always sung that I wonder how their meaning could have possibly been anything less than what it is now.  Things that we perceived to be struggles or trials before now seem like mere inconveniences.  One of my favorite sayings is "a virtue untested is no virtue at all" (shout out to Paradise Lost by John Milton).  On January 5th, 2015, we had untested virtues.  Not because they had not been real, rather they were simply untested until that moment.  

A year ago tonight I didn’t know that I was laying my head on my pillow for the last time in such a carefree fashion.  God never asked me what my preference was- whether I’d prefer our baby with Spina Bifida or without, but I’m completely grateful that He didn’t give us the option.  I am satisfied that God, in His infinite wisdom and sovereignty knew that we could not have wrapped our heads around having a baby with a life long, life impairing condition, but He chose to bless us anyways. Truth be told, I like my scar.  I like the name Poppy.  I like her purple braces.  And Poppy has a really cool Physical Therapist.  All of those things I felt we were being cursed with on January 6, 2015 are pieces of our every day on January 6, 2016. There's a level of rawness that goes away after a year and our pre-Spina Bifida lives get blurrier and blurrier until this is just kind of how we are.  While the pain isn't gone and the struggle isn't easy, it's absolutely worth this littlest person that we get to share our lives with.  

One year ago tomorrow, I felt like our lives were ending.  I realize now that our stories were just making a huge curve down a road that had seemed pretty straight up until that point.  But that curve is our story.  As my sister Katie reminded me the today “The struggle is part of your story”.  

I look at this sweet face and I remember all those tears 364 days ago, the unknowns and the feeling of despair.  It's as if she's saying to me, "You silly mommy!  What were you worrying about?  Don't you know you're going to love me like crazy?  I'm just fine!"  

We're all going to be okay.  We're all on the curve together. 

Psalm 139:15-17 (par)
Lord, You watched as Poppy was being formed in utter seclusion,
as she was woven together in the dark of my womb.  
You saw her before she was born.
Every day of her life 
and Jordan's life 
and Matthew's life 
and Gavin's life 
and Harper's life 
were recorded in your book.  
Every moment was laid out before a single day had passed.
How precious are your thoughts to us, O God.

Thursday, December 24, 2015

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!!!)

Thursday, October 8, 2015

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. 

Tuesday, June 2, 2015

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 3rd and the goal was to remain pregnant until a planned C-section that was scheduled for May 1st, 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 31st- 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 2nd, 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 27th 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 2nd 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.  

Monday, May 18, 2015

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

Sunday, April 19, 2015

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 3rd 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 28th 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 31st- 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.