March 29, 2012

The Four of Us

Let's take a brief intermission to look at some shots of my three favorite people on Earth. The photo shoot that began in early March with Mary Brooks' first signs of sickness got a redo two weeks later, just days after we were discharged.

We were so thankful to celebrate our family being whole again! I can't get enough of these beautiful pictures Christy Hollywood Photography captured for us.

This is a bittersweet shot, taken just minutes before MB first became ill. I love how sweet Mac is to his baby sister, and how tiny she looks here at just two weeks old!

If you look closely, you can see a raised incision mark on her abdomen.
Our little four-week-old fighter!

Mac likes to tell us we're big, he is "wittle" and Mary Brooks is tiny. He's demonstrating this with his "tootsies" right here. It's one of my favorites!

We're thrilled Christy could come back when we had even more to celebrate than the first time.

I wondered after Valentine's Day how I could ever feel so happy in 'real', non-newborn life. Coming home from the hospital the second time, however, was even sweeter.

You can see more of the first shoot here and the second shoot here at Christy's blog.

March 26, 2012

The Longest Week

(A better title might be "The Longest Post." If you're jumping in, catch up on our newborn's diagnosis and emergency surgery to make more sense of this. I'm writing this mostly get it out of my head and into a form where I'll never be able to lose sight of it. Sorry to clog your brains with so many details, too!)

After Mary Brooks' surgery ended, we stayed in recovery a while, monitoring every vital sign imaginable; then we were wheeled up to the pediatric floor. MB did well enough that we were able to avoid the NICU or PICU, parts of the hospital where parents aren't always able to room in and visitors are far more restricted.

We were weak-kneed with gratitude for that, as the idea of leaving the hospital without her felt akin to leaving a limb inside its walls. I quite literally might have slept in the parking garage and you would have had to peel Bradley off his beeping, wire-covered two-week-old. Thank goodness we didn't have to go to those lengths.

Instead we were sent to the brightly-colored pediatric floor of the Children's Hospital, which had been the home of Labor and Delivery when Mac was born. It was a far different set of emotions we experienced walking its halls this time.

We landed in room 6507 and, unbeknownst to us, began the longest week of our lives.

The first night we slept fitfully, Bradley sitting up and me lying down on the semi-cot my chair folded into. B's recliner only laid back when continuous pressure was applied, so relaxing into slumber was a recipe for being snapped straight up mid-snore.

The poor guy curled himself into a painful curve to fall asleep well after midnight, only to wake five and six times an hour each night, hop up to attend to MB and then reposition himself delicately. It would have been laughable were he in the mood for joking.

The interruptions to our "quiet" nights were endless.

Mary Brooks had cords attached to machines monitoring her pulse, breathing rate and oxygen levels. She had an IV providing fluids (sadly, no nutrition) and several "extra" wires providing back-up vitals data.

Alarms went off as her little body moved or leads slipped off of her tiny limbs. Tape and liquid adhesives were applied all over to keep things in place, but there was only so much room.

The beeping was enough to drive a girl mad, but they were too jarring and terrifying to do anything besides send my blood pressure sky high every ten minutes or so. I relish the stillness of our house even more now because of it; waking every three hours to feed a hungry newborn sounded like an absolute dream by comparison.

Besides scaring us and startling herself with alarms, MB was bruised from the pre-surgery attempts to get her IV in a variety of places. She had become so dehydrated that finding a vein was a challenging, adding some time to the original surgery estimate we were given.

(Side note: she'd also had a dirty diaper directly on the surgical table, something of a surprise given that her intestines were twisted... Evidently that took some time to clean up as well. Bradley did not seem impressed by these 'excuses' for a three-hour procedure. You took his girl away with a promise of an hour and a half surgery; at eighty-nine minutes he was ready to hold her again. Thankfully I kept myself preoccupied a bit too much to watch the clock.)

When Mary Brooks was swaddled, none of her machinery was visible except the OG (mouth-to-stomach) tube that kept her GI tract decompressed, bringing up fluids and ensuring no gas built up. It was suctioned automatically every few seconds and Mary Brooks clearly hated it.

The tube, in addition to scraping the back of her throat, made it impossible for her to truly use her pacifier, the one comfort she had. That didn't stop her from trying, though!

Still trying a paci with the OG tube in.
The red, raw patch on her cheek is from adhesive residue.

The green liquid in the tube was suctioned up from her stomach every few seconds.

Between the suction sounds, constant alarms going off and Mary Brooks waking every few minutes to moan pitifully, sleep was elusive. Days began at 5:30 am when the med students began to round, then residents, then attendings.

I tried to beat the med students into our room (why don't people knock, by the way?) by waking even earlier to pump; it wasn't hard to do, given how spotty our sleep was.

Modest as I am, by the end of the week I just stopped caring if folks walked in to see me shrouded in a blanket with clear tubes sticking out and a tell-tale humming noise giving things away. You don't knock and you get a lactating mom - sorry I'm not sorry, docs.

On Monday, which both flew by at breakneck speed and dragged on while MB was in surgery, I was on autopilot. Tuesday I was on some Mary Poppins-esque combination of speed and willful ignorance.

I woke up exhausted but as optimistic and hopeful as ever, almost manic in my silent 'this is going to be fine-we are going to be fine-she is going to be fine' mantras. I wanted the tubes out. I wanted Mary Brooks to be able to eat. I wanted to hold her without fear. I had goals and big, big hopes. I chose to believe we were going to see nothing but improvement.

Let's do this, I thought. Let's be positive and send out prayer requests and blow these surgeons away with our success. Let's envision only a happy ending, no setbacks, no shutdowns, no dilly-dallying.

We were given no timeline, no concrete goals to meet, no estimate of when we'd go home besides a vague "wait and see" approach. I'm a planner; this doesn't sit well with me. I don't care if the timeline is too long for my liking, I just want one.

I counted Tuesday as 'day two' and found a 6:00 am rude awakening when a resident informed me doctors 'count only post-op days.' So Tuesday was day one, which felt like a punch to the gut.

All the same, I ran on adrenaline and optimism, writing, speaking and posting with a decidedly positive voice, one that rang a little hollow in my own ears. It only got further and further from how I really felt as the week progressed.

Mary Brooks pulled her OG tube out and it was quickly replaced, a procedure for which we had to leave the room. Within a day she had pulled it out again, so it was repositioned as an NG (nose-to-stomach) tube - allowing more pacifier access and slightly less discomfort.

I was relieved, and Mary Brooks, despite pulling it out once more, did seem to be less bothered by it in its new spot. I still cringe at the thought of a tube scraping down through my nose to my stomach and suctioning up its contents. I'd have traded places in a heartbeat, but I can't blame the girl for yanking at those tubes. If only replacing them wasn't such a painful ordeal.

One day blurred into the next and Mary Brooks' situation didn't seem to change much. She couldn't eat, not even clear liquids, until a few general, unspoken goals were met. I heard words like 'improvement' but didn't have anything specific to tie my 'let's get out of here' dreams to.

There were a million little concerns - the output from her NG tube, indicating the wellness of her entire digestive tract, was too much. It needed to indicate far more progress internally before her tube could come out and food could enter the equation.

Her urine output was too little, even days after surgery. I heard talk about kidney function and tried my hardest to swallow the lump that formed in my throat. I could only handle one systemic problem at a time.

Her post-op fever returned and then, mercifully, retreated.

She was so small, and what she'd been through would have required a lengthy recovery for even the heartiest adult. But I wanted her out out out. I wanted our life back.

As B came more and more out of his initial, shocked, 'what is happening?' reaction to things, my full speed ahead facade began to crack.

My Mary Poppins energy levels came to a hard stop on Wednesday morning; I woke up irritated as all get out to be there. I wanted to be home with my children under one roof, worrying about constant diaper changes or laundry left too long in the washer.

Somehow I shook that off, hopeful again that she'd get her NG tube out and would be on the road to nutrition and, before too long, a normal life. That didn't happen. And life was far from normal.

Mac was suffering at home, waking up crying and so sad he made himself physically sick. We could only spend bits of time with him and, while he adores his grandparents, he loves a routine. He knew that having someone besides his parents at home meant something was wrong.

Our sweet boy loves mail; this was one attempt to get a smile out of him.
He missed his baby sister terribly and I didn't know how to make it better, or what to say. Mary Brooks wasn't my only hurting child.

Thursday, day three to the surgeons and day four to me, I hit a wall. A jagged, angry wall. I fought hard to keep my emotions in check but after days that became nights that became days again, full of beeping and moaning and needles pricking my child and pain relief that came through more discomfort (a Tylenol suppository? really? how unfair is that to a newborn?), I was done done done.

I would describe it later as the worst day of my life, where everything that had happened in the one really long day last week washed over me in a bitter wave. I tried to speak with my mom about it the next day, semi-recovered, but neither of us could form too many words. It was a depth of unrelenting pain I'd never experienced, for me and for my daughter.

No wonder Mom couldn't find a voice through her tears; she was living the same agony I was, watching helplessly as her own daughter hurt.

I wrote this email to a dear friend who asked questions when no chipper Thursday morning update went out. (I had nothing nice to say so I just stopped talking. Wrap your brain around that one.)

I meant every word wholeheartedly. The keys nearly broke, I typed this so angrily:
Am having a moment. Really really really really don't want to be here. None of us.

My child is crying and hungry and hasn't kept down a meal in six days. I want her tube out and I want to feed her and I want her full and I want her to sleep and I want to sleep too. At home. In our beds. Where I can hold her without these flipping wires.

I want people out of my home and I want to care for my son myself. And be with MB too. I want people to stop poking her and prodding her and making her scream. I want screeching alarms to stop going off at all hours of the day and night.

And I feel guilty for feeling all of this when I am also so very grateful. God has walked beside us and I know He is with me even now. My daughter is alive and will recover. I believe that. It could have been so different. But I need real concrete good freaking news from a surgeon besides "so far, so good."

I feel like this may never be over, even though rationally I know it will. And I am thankful it will. But please, God, let it end soon. Not sure I can keep holding it together for days on end.
I thought I might lose my mind. I might have lost my mind, actually, and just kept moving my body so convincingly that no one noticed.

I was powerless and pointless and of use to no one, particularly not the little girl who needed me most. I could do nothing but listen to her wordlessly telling me how very wretched she felt. Her pleading eyes and her weak, despondent baby noises were more than I could bear.

I heard Mary Brooks scream one too many times that afternoon and allowed myself a ninety-second meltdown in the bathroom by her bed. I put my head to the tile wall and screamed silently. I cried so hard I was grateful for the drain on the floor of the combination toilet/shower. I absolutely ached.

Sweet friends had eaten lunch with us and left a marvelous care package, which included a box of tissues. I smiled smugly to myself, thinking how tough I was not to have needed any thus far. And yet here I was an hour later, mopping my face with tissues by the handful.

I wanted to tell someone, to answer questions honestly, but I couldn't think of anything to say besides, "This is agony. I am in anguish. I am desperate to heal my child."

Though Mary Brooks' condition was technically repaired on day zero (that's a stupid way to count, surgeons), there was a lot of waiting and seeing to be done. We had to see how her body would react and if when her systems would 'wake up.'

There were so many possible outcomes that weren't what we wanted. Especially since what I wanted was for none of this ever to have happened.

I thought of what I would have done to avoid this. I'd have gone through her surgery for her, without drugs even. I'd have slept on the pediatricians' steps the first time we were sent home with no answers. I'd have given every penny we could ever earn to get out of there.

Sign courtesy of another double-named baby's mom.
Would anyone name their baby just plain "Mary Smith"?
Not someone named "Anne Smith." I know from plain.

We were covered in love - in phone calls, visitors, meals, texts, notes, family and friends. In nurses who forced me to walk down the hall and pump (how sad that pumping in a new location was a luxury) to have 15 minutes to myself. In people literally coming alongside us to pray, to listen, to ask questions, to eat, to share in the experience.

And yet I was miserable. Thankful, to be sure, but utterly miserable.

The thankfulness almost compounded my misery. I followed every sad thought with a self-admonishment to buck up.

Didn't I know not everyone gets a second chance? Didn't I realize a host of families would give anything to have their child in this condition, with a relatively hopeful road more than likely ahead? Couldn't I just continue to praise God for what we had and wait patiently for whatever came next? Could I really be so ungrateful as to stomp my feet and wail, healthy and whole, on a floor of sick children?

When Krispy Kreme and a Mac visit don't make you smile, you're losing it.

I couldn't allow myself the luxury of being broken, but the beating myself up only made it worse. And my fallback methods of coping weren't fixing things.

I was too overcome to read Scripture most of the week. The words themselves brought me to tears in an instant, so grateful was I that Mary Brooks' condition had been caught and reversed in time. I literally couldn't see through my crying to read them, so I had to stop trying.

In the wee hours of Friday morning, though, by the light of my iPhone, I read Romans 8:18-28 and was able to make out the words - a promise. A hope.
"Yet what we suffer now is nothing compared to the glory he will reveal to us later...

We believers
groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering...
But if we look forward to something we don’t yet have, we must wait patiently and confidently.
And the Holy Spirit helps us in our weakness. For example, we don’t know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words.
And the Father who knows all hearts knows what the Spirit is saying, for the Spirit pleads for us believers in harmony with God’s own will.

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.
" (excerpted)

The Holy Spirit was groaning for me even in the midst of my own moans, of my child's. Someone was making sense of my heartache, of my desperation. I was being heard and the suffering Mary Brooks was experiencing wasn't for nothing.

I read and reread that chapter in our remaining days there, soaking up every word and experiencing Scripture in a way I never have before. Being truly instructed, lifted up and encouraged. I have felt words speak straight to me before, but never this deeply, at such a primal level.

I was shored up in that instant and knew in my bones that we could do this. Whatever 'this' was, we could do it. I could hold it together because I wasn't the One doing the holding.

Thank God, the best was ahead and that dark point was just a heartbeat away from truly good news. There was still a road ahead, but we were going to get home eventually. And I could hang on until then.

I wish I'd seen that hope sooner, but I'm glad I lived to tell the tale. Wherever you are, if you've made it through this novella of a post, be encouraged. You aren't alone and whatever trial you're in will get better.

Our suffering serves a purpose. There's an indescribable glory, far sweeter than we can imagine, on the other side. I have a six-week-old who serves as my reminder; we all have a Savior who does.

Up next: The miracle. The good parts. The surgeon who was surprised. The quick steps forward, the happy news and the ability to snap out of the self-pitying pit I was in to gain a new sense of compassion.

Chick-fil-A and flowers were just the beginning. No one has ever felt so loved.
There are so many people who need our help and prayers. And there are so many ways to serve them, to show them love and live in community.

You've each taught me that. I promise the 'woe is me' part is (nearly) behind me in this tale.

I can't wait to tell you all the ways we were carried, all the times I felt God's hand even in my head-to-the sterile-tile misery.

Thank you, all of you, for 'listening.' What an encouragement you have been on this ride.

Three Hours

There's a lot to say about our time in the hospital. I don't want to forget how we got here or what we've been through, and I particularly don't want to lose sight of the miracle we've witnessed.

I've been putting this post off because, quite candidly, it's painful to relive. The days that followed were far more difficult on our family than the emergency surgery itself. Odd, isn't it, that time recovering on a cheery pediatric floor would be more agonizing than an unexpected, life-threatening diagnosis?

I've written a virtual novel here and am posting it in bits scheduled to go up each day this week. I promise Anne Says So won't always be a record book of the crazy month of March, but if you could take a peek into my thoughts, you'd see there's little else up there these days.

Once I get this out of my system, I promise to move on to the funniest blogs I've come across lately, the return of Mad Men and my recent iTunes downloads. Y'know, world-changing stuff. For now, though, I'm waiting until this brain dump is complete. I'm a new person, and I need to remember why. Always.

I left off just outside of an operating room deep in the (insanely confusing) halls of Greenville Memorial. After handing MB over to the sweetest team of anesthesiologists, surgeons and nurses, whose charms and skills were lost on an utterly bewildered pair of parents, all we could do was wait, pray and hope.

We were told the surgery would take ninety minutes, a staggering feat considering Mary Brooks was to be put under, her appendix removed, and both her large and small intestines taken out, uncoiled, repositioned and fixed into place.

Bradley was stunned, quiet and reflective. I was just Anne in overdrive. I responded to texts, answered calls, coordinated arrival times and childcare, arranged a "text tree" to distribute updates, talked to hospital staff about the interactive "surgery status board" and kept myself as busy as possible to avoid picturing my seven-pound 20-day-old cut wide open on a surgical table.

(I remember, moments after the diagnosis, asking if we'd have to spend the night at the hospital. The look on the resident's face made it clear that I wasn't processing what they were telling me. He said, with as close to a straight face as he could manage, that we'd be at the hospital a full week, maybe more, maybe less. "It all depends." Now I see that a week in the hospital was the least of his worries for us.)

The moment I stopped moving to absorb what was going on, I was overcome with a twister of emotions I could never untangle. So I just shut. it. down. I felt little, if anything, and that was how I coped.

I thank God I was able to do so, and even more that didn't research her condition while I waited; had I read what was really happening and the potential outcomes by age range, hers being the youngest, I'd have been a heaping, sobbing mess, useless to anyone but my own panic.

After an initial update that Mary Brooks' intestines were viable, the biggest answered prayer I never had the forethought to pray for, we heard nothing until the surgery was complete - three hours later.

When I look back at my texts during those first hours, I responded to my best friend, who was relaying her fervent prayers, that I needed her to pray hard enough for the both of us because I just couldn't. I don't remember writing that, but I know it was true.

Even typing that now makes me tear up; as machine-like and faux 'normal' as I felt, opening myself up to beg for help and pray as vulnerably and desperately as I needed to just didn't feel possible. There wasn't one drop of me to spare and I couldn't allow myself to perceive how precarious things really were. It was just too much.

On that afternoon and in the days that followed, my prayers were one word repeated over and over, each with a deeper sense of honesty and anguish: Please. Please, God. Just please. I know He knew what I meant and what we needed. To this day I can't imagine how any other words could have come from my heart right then.

What else was there to say? I knew Mary Brooks was being prayed for and we were too - I could feel it. It was all that kept me going. But praying my child's name? Contemplating what was really happening and how powerless and clueless I was in its midst? I couldn't.

As fervently as I say two-word "thank you" prayers a hundred times daily now, I begged the heavens to heal our girl, to give me the ability to make it through, to provide me with the presence of mind I needed to function as a mother and a wife. I did it the only way I knew how, with the only brain cells and scraps of awareness that remained. Please.

Three hours passed in a blink to me, still spinning like a top, and aged Bradley a hundred years. When we saw the team of surgeons walk into the waiting room, we were on our feet without thinking and followed them without question or looking back.

I dropped my phone and the crackers someone had asked me to eat; I left my parents and our friends and we just flew. I don't know if we took elevators or stairs or twenty turns of a hallway to get to her, but suddenly there we were in recovery - and she was whole.

I remember feeling instant, tremendous relief at the relatively small size of her incision. There were no stitches or sutures, just a cut the length of my thumb, pink and precise, through which the surgeons determined whether Mary Brooks' case was a "near miss" or something bigger. We praise God, with our fuller understanding now, that it was the best they could have hoped to see.

I recall vaguely the surgeon speaking quietly to Bradley; the words "grace of the Lord" and "weekend" stuck out, but I heard nothing else. Days later I learned he had told B it was only through God's grace, after a full weekend and nearly four days total of impeded blood flow, that Mary Brooks retained both her intestines and the promise of a full, easy life. (Insert "thank you" prayer here, and every time I replay it.)

There were so many other potentialities, as the doctors deemed them. Removal of part or most of her intestines. Intestines grafted to her skin and a bag on the outside of her tiny body. And, as much as I like to avoid thinking of it, not coming home with a healthy baby. Or any baby at all. A nurse days later cried over our girl, telling us that her goddaughter had died of the same condition. Praise God our story ended differently.

After assuring us Mary Brooks had done as well as they could have hoped, the doctors directed me to a rocking chair and placed our warm, sweet baby in my arms. It felt just like holding her for the first time - bewildering, a little foreign and absolutely life-affirming. She was here.

Just like in our first moments together, I spoke the same words to MB over and over in unspeakable awe. "Hi, baby girl. Hi. Hi. I love you, oh, do I love you. You are so beautiful, baby. You are so beautiful. And we've been waiting for you." It was even more true the second time around.

It felt like the end of something, having her back in our arms, but it was just the start of a very long eight days. Mary Brooks had a new chance at life, but she had a long road before coming back home - and so did we.

March 19, 2012

Catching You Up

This month has been a full-on blur; I have little idea what day or time it is at any given moment. (Thank goodness my iPhone is velcroed to me at all hours.)

So much has happened at breakneck speed, and yet I feel like these most difficult days of my life have lasted for ages. I can't make sense of that dichotomy.

A month ago I would have told you, while silently patting myself on the back, that I'd survived the impossible: natural childbirth. I barely even consider that when I look over recent weeks. It's certainly not the accomplishment I thought it was; it was a cakewalk compared to what came next. I'd relive that night - the excitement, the nerves, even the pain - and the happy days that followed a million times over.

Having Mary Brooks on Valentine's Day seemed like a defining moment in our lives, but something bigger has happened. Life is measured now in "before" and "after" for us - but it's not centered around her birth.

Our world came to a screeching halt two and a half weeks later, and out of that has come a fresh start. The weight of it still sends me spinning. I have put it out of my mind to survive lately, but the more I process things and think them over, the more I realize it: We've survived something that will always define us. We've survived.

Not alone and not by our own strength, that's for sure. But that's another story for tomorrow.

Mary Brooks, Bradley and I have been home with Mac for a week now exactly; last Monday at this time I was praising God and high-tailing it out of the peds floor, MB snuggled in my arms.

I said goodbye to the shoebox room that had been our home for eight full days (as B says, an eight-day, seven-night getaway we never wanted) and snapped this shot of my giddy guy carting our belongings out.

Heading home sweet home, March 13
I started this post two weeks ago tomorrow, the morning after her surgery, but I couldn't finish it. I'm still not sure I can. There's so much to say and a great deal I don't want to tell you, pieces of our experience I hope no one else ever has to know or understand. But the Lord is telling a story through us, through our girl, and I feel called to record it.

To catch you up, help me keep my facts straight and potentially help someone who stumbles across my blog with a similar diagnosis (intestinal malrotation and volvulus), I'll start at the beginning and take it in pieces. Don't feel compelled to read every word, but know that I'm pouring this out both to record it and to make sense of it.

From birth, Mary Brooks has been a tiny angel. We hesitated to talk about it for fear that she would turn on a dime and become a fussy, high-maintenance little thing, but that's the furthest worry from my mind now.

MB only ever cried out when she was unswaddled, undressed or having her diaper changed. We must have checked her breathing hourly since birth, just in awe of her peacefulness. She nursed like a champion from the first moments of her life and ate every three hours during the day and every four (or more) hours at night. You can't ask for more from a two-week-old!

On Friday the 2nd, our gorgeous girl had a projectile vomit incident during what was meant to be a newborn photo session. Thankfully our photographer was a sweet friend who kept Mac (and took some fabulous pictures of him!) while I ran MB up to the pediatrician, utterly terrified. I'd never seen anything like it - so much, so forceful, absolutely awful.

MB at the doctor an hour after she first got sick, March 2

There were no real answers at the time, and that continued when I called on Saturday morning after the vomiting continued. It was just too soon to tell if it was a stomach bug, a fluke, the start of reflux or a potential lactose intolerance issue.

Regardless, I just felt like things were off with her - but what did I know? I'd only had her for two weeks; we were just getting to know her.

My parents came up that Saturday to help and let us get out of the house for a wedding; during that time Mary Brooks seemed better. Sunday she seemed more hydrated and, numbers-wise (diapers, etc.) she was picking back up - but I still felt like she wasn't herself. I wanted to speak with the on call doctor but knew I'd hear the same thing: quantitatively, she was improving.

She gathered her strength and stayed awake Sunday evening (a rarity during her sickness) long enough to have a full meal - and I sobbed as it came back up through her nose and mouth simultaneously, as violently as I'd ever seen. I prayed for morning and the opening of the pediatrician's office doors.

Mary Brooks slept all night, something you don't want your two-week-old to do under such circumstances; Monday morning I took her in to our favorite pediatrician across town, hoping he would "get" it. He did - and we could never thank him enough.

While MB was technically fine (looked well, had wet and dirty diapers, wasn't severely dehydrated), he believed she was ill. Hallelujah, someone listened!

Just before becoming sick, our overachiever of a daughter had blown the doctor's "return to birth weight" goal out of the water by a full pound. I believe now that the Lord must have fattened her up before the symptoms of her volvulus started.

In the six days between her two-week well visit and her surgery, she was on track to gain another pound; instead, she lost nine ounces and couldn't keep down an ounce of clear Pedialyte. I was desperate for an answer and afraid we'd be sent home to "wait it out" again. I just couldn't stomach watching any more lethargy in our baby, much less any sickness. It ripped my heart out.

The doctor was concerned he'd send me into a panic by suggesting an ultrasound at the hospital. He told me he was probably being overly cautious and could go either way on the decision, but just felt that her abdomen seemed guarded and tense, as though she was hurting.

I knew she was hurting. Instead of fear I felt overcome with peace - Yes. We will get an answer. She will get some relief.
We were told not to pass go or take our time in getting from that suburb to the hospital minutes from our house. I guess the receptionist didn't get the "don't cause panic" memo? We called a friend who lives near us and dropped Mac off on our way.

After an hour in a waiting room full of hacking, foul-mouthed, body splash-spraying future hospital patients, we were thoroughly irked and scared for our girl finally registered, processed and ready to...wait more.

We went to the radiology waiting room, then the pediatric waiting room. It's amazing how calm things were there, looking back, because once we got into the ultrasound room, everything went in a different direction. The ultrasound tech took her time looking around for what our pediatrician suspected was the problem - only not to find it.

The diagnosis I was most hoping for, odd as it sounds, was pyloric stenosis. The words "laparoscopic procedure" had dropped my heart into my stomach days before, but at this point I wanted a definable, fixable issue.

Her pylorus looked normal and we were mentally heading to the next step (giving her dye and an x-ray of her GI tract) when the tech caught something small, easily missed - just a vein and an artery placed a little differently than most.

The head of pediatric radiology, hard of hearing and speaking loud as all get out, swooped in to confirm her thoughts, told us Mary Brooks had intestinal malrotation with volvulus and that it was life-threatening.

He described it to us briefly - it was essentially a twisting of her midgut that could cut off bloodflow to her bowels - and emphasized that any time spent discussing it further would only delay her much-needed surgery.

Next came the tailspin.

B made arrangements for Mac while I stayed with Mary Brooks and focused on not falling apart. I texted a friend, asking her to inform another that we wouldn't be home to receive the dinner she was delivering. Because that seemed so dire at the time. I tried to call my dad (because I didn't want to have a mutual meltdown describing things to my mom) but hung up on him three consecutive times as new doctors rushed in.

I opened the Bible app and asked Mary Brooks if she wanted to read the verses I'd prayed over while she was forming. I couldn't get them out of my mouth, though, and instead just silently prayed over her and told her how much we loved her, what a good, beautiful girl she was.

Soon Bradley and I were scrubbing up to walk Mary Brooks through a labyrinth of halls and elevators into an OR. We answered a few questions and handed our sweet beauty to a nurse who would put her to sleep. They told us they'd remove her appendix permanently, then take both her large and small intestines out of her body, untwist them, and put them back.

That was the best case scenario. They'd only know once they got inside her what her prognosis was. I'm glad they didn't give us the worst case or discuss the mortality rates or the chances of survival for babies her age who had complications or any necrosis (dead portions of her intestines). We learned later how grave the situation was and how much heartbreak could have been ahead.

MB in her room, days after surgery
I'm glad my parents rushed in and our dear friend Matt left work just to sit with us in a waiting room, no questions asked and no need for conversation.

I'm glad friends came out of the woodwork to call, text and email for news and I'm especially grateful for the friend who brought me an iPhone charger because my one lifeline to the world was dying.

I'm glad for the people who passed along updates so we wouldn't have to and who listened to my manic I'm-totally-fine-my-whole-world-isn't-cut-wide-open-on-a-surgical-table-right-now attempts at humor and conversation.

As we tend to do, Bradley got quiet and I stayed busy. Finding the lactation office, getting a pumping kit, hunting down a room with a door to just stand, thunderstruck, and fight back tears. I just knew that if I let the waterworks begin, I'd be useless to Mary Brooks and everyone else. I fought hard.

When I left that small lactation room, the only private spot in the hospital for parents who have just kissed their babies goodbye with a moment's notice, we ran smack into two precious friends coming to deliver their son.

That bright spot - the hugs, the excitement, the mutual promises of prayer - was God carrying me through. I saw it in so many ways that Monday and in every hour since.

I'm getting long-winded and ahead of myself here. See why I'm dividing this up? Feel free to read or not read as you see fit, but know that your prayers and love are a huge part of why we're still here, still functioning. The food, the calls, the support.

I'll write more about the surgery, the longest eight days of our life, and how we have learned more about compassion, love and community than we knew in our decades on Earth before this.

The happy end of the story is this: our Mary Brooks is home and well. We four are back under one roof and, although we're still walking through some challenges, we are more grateful than you know to face them in our own home.

Thank you for letting me clog this space with my rambling, ridiculously incoherent thoughts. I haven't allowed myself much time to work through them until now, just typing this out. I look forward to making sense of it all.

They took great care of us, but a terrible day at home still beats the best day in here.

"Let all that I am praise the LORD;
may I never forget the good things he does for me.
He forgives all my sins
and heals all my diseases.
He redeems me from death
and crowns me with love and tender mercies.
He fills my life with good things.
My youth is renewed like the eagle’s!"
Psalm 103:2-5

March 6, 2012

Emergency Surgery

Hi, friends -
Some of you may know from Facebook (or email, Twitter, texting and every other means of communication that's kept me going these last 24 hours) that our Mary Brooks had emergency surgery yesterday.

She was diagnosed with intestinal malrotation and volvulus, essentially a twisting of the gut that cuts off blood flow to her bowels. She had been sick since Friday and I was hoping for an answer of some kind, but certainly not this one.

Twenty four hours ago we were just arriving at the hospital for an ultrasound, hoping to get a closer look at her stomach and possibly some insight into what was going on. Within an hour, we had surgeons lining up and were scrubbing up to hand our baby off in the OR. Unbelievable.

She came through beautifully, with none of the major complications doctors had brought up initially. We have felt, in so many ways, God's hand in this situation and I can't wait to tell you all about it.

Sweet angel in radiology, just before her diagnosis and the rush to surgery

In the meantime, would you continue to pray for her healing, for her comfort amidst this pain, for her brother as he adjusts and tries to understand the many changes, and for us as we work to split our time and care?

I've been surprisingly, shockingly, truly okay. I am carried by the prayers of others and I feel a peace that knows no explanation beyond this one. That said, natural childbirth was easier. I'd do it ten times over just to keep this tiny, sweet, angelic little creature from feeling one more ounce of pain.

It's an apt analogy, natural childbirth and our stay in the pediatric unit. People applaud you for it, but you (or I) don't choose it. You aren't a hero for surviving it, because you don't want it. You don't feel like you're doing it well, it's certainly not what you would have preferred to do, but you're tossed into this situation and you just do it. There's no other way but through it.

Thankfully I have felt far more carried than I have like someone "powering through" a tough time. I keep waiting for the other shoe to drop but so far I have been a person entirely unrecognizable even to myself. Few tears, little panic, just peace. And gratitude.

I am ready to hold my girl without tubes and wires, ready to take her home, ready to pile our family onto the sofa and feel "normal" again. That will be a while, though, as they anticipate a five to seven day stay here at minimum. And obviously we want her to stay until she is 100% ready to go. But please, Lord, let that be soon.

MB resting this morning

I'm too thankful for words for each of the notes and calls and prayers. Know how very much they mean right now, to me and to Bradley as well.

I'm so grateful to know we're taking her home, that she'll be well and healthy and likely never think of this another day in her life. As for me, that's probably not the case; I'll never forget the care and love we've felt here and the miracle we're living.

We love y'all and will keep you posted!


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