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.


The Gaymons said...

Anne, I am so glad that you are recording all of this....ALL of this. You will look back on and to see the Lord's goodness in it ALL. Now, I do have to say, that I may have to take a haitus from reading if you keep making me cry to the point of blubbering. Sounds crazy...crazy enough to be true! I love you dearly, friend, and I am so grateful the way God has changed you and your family in "the longest week" of your lives. When you feel up to it, let's get together for a low key casual playdate! Can't wait!

Day Old News said...

My stomach just felt sick with grief and anxiety for you reading this post. I can't believe how strong she had to be as such a baby. What an awful time for you and yet you are still such a woman of faith! I'm sending you a bear hug right now.

The Gaymons said...

See, I was blubbering too much to use proper grammar or even to make sense at all. Oh well. You know what I mean.

Julie said...

Reading this just gave me chills. My newborn daughter (now a healthy 12 months) was also hospitalized almost 5 days after her birth for 9 days at Children's hospital of WI, including 2 days in the PICU and it was the scariest, saddest time of my life. You described so well the horrible noise (those IV machines - dear god), the sleepless nights, the awful procedures... I was also pumping and nursing and I just gave up privacy completely - if you come in our room, you will probably see some boob, deal with it. I could go on. I'm sending your positive thoughts and admiration from someone who has been there.

Samma said...

Anne, I am laying in bed, watching my little double-named girl on the video monitor and sobbing. Imagining my mama seeing me hurting, like how yours hurt for you. Oh, I am just so thankful that we know the end of this story, and that it was a happy conclusion. Thank you so much for sharing this story with us. Much love and prayers, Samma

Kristen said...

Dear, beautiful friend, as I read this post, re-emerging myself in that week, I wondered how I would possibly form a comment at the end of it. The line from your scripture passage "groaning that cannot be expressed in words" leapt out at me, as that is exactly how I felt watching what you were going through - and how I feel now, revisiting the week and that email from you that made me cry with helplessness. Please know that I do not have your gift for words or for saying the right thing at the right time, but I have truly felt this journey with you every step of the way and I love you -- all four of you -- more than you can possibly know.



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