May 2, 2012

Rounding a Corner

In an effort to get this out of my head, I'll pick up where I left off. It wasn't the best place.

By Thursday evening Mary Brooks had been sick for nearly a week and in the hospital four days. She was on post-op day three but surgeons had little to tell us - we were in limbo. There was little progress; there was a lot of crying.


Thursday, as you know, was rock bottom. I was utterly beside myself, desperate for something to change.

At this point Mary Brooks hadn't eaten for a third of her life. She cried on and off with an empty, helpless moan; the sound was like shards of glass. Our go to means of comforting her were made impossible by the machines she was hooked up to with an intimidating number of tiny wires.

The nurses encouraged us to hold her, and we were able to in short, infrequent stretches, but there was nothing natural about it. We weren't snuggling her as much as awkwardly placing her in our arms as we sat unmoving, speaking softly and rearranging our bodies with the utmost care.

With every effort a wire came unlodged, a tube became occluded, an alarm screeched with a pitch that could wake the dead. (And did, if you consider the number of times those sounds wrested me from the coma I called 'rest' each evening on my makeshift cot.)

She'd had two bad nights in a row; we were up eight or nine times an hour during the midnight to 5am stretch we reserved for sleep. I'd say Bradley caught about thirty minutes of sleep that night in insanely short bits and "eight and a half hour Anne" didn't get much more. You could say we were running on empty, but the truth is we weren't running at all.

The week before the surgery, less than 48 hours before her first symptom, I snapped this:

Two weeks post-partum, I was blissful. I reveled in the quiet sweetness of our expanded family.

I look back at that period as a golden haze, the two weeks between when we brought her home from the hospital and when she became ill. It wasn't what I expected from my first few days as a mom of two. The Lord blessed us with a tremendously peaceful, recuperative time that strengthened me to walk straight into the wall that was March.

What does one look like after she's walked into that fiery, what-on-Earth-happened-to-our-life wall? Something like this:

Yes, this is me. Showering in a tiny stall, lying wet-headed under a stiff sheet on a faux bed next to my daughter's cage of a hospital crib, fighting tears at every moment I wasn't staring dull-eyed at the digital read-out of some beeping machine.

I normally wouldn't post such a horrendously unflattering shot of myself, but I know no better way to illustrate my point. Only six days separate these two shots, and a whole lifetime.

Sadly, I had attempted to fix myself up. I took the elevator, applying lip gloss and wiping my eyes by the mirror on its ceiling on my way to the mom & baby hall. Three weeks earlier we'd been doors away, giddy as schoolchildren over our own newborn.

The friends we ran into while MB was on the surgical table had delivered their darling boy, and I got to meet him not nine hours afterward. Five more friends came in while I was there, a virtual tailgate of some of our favorite folks.

I smiled, cooed, listened, laughed and briefly answered their questions about Mary Brooks with, "Thank you so much. She's going to be fine."

I didn't know that; I didn't feel that. But I couldn't imagine welcoming a new life in one second and spilling my guts in the other. That newborn deserved a room full of happiness.

(And he deserved better than a pale-faced, puffy-eyed, panic-stricken Anne holding his tiny, swaddled self. Bless his heart. It's a wonder I didn't scare him to pieces.)

By Thursday, worn out from faking it and exhausted from the weight of waiting, I collapsed. That night was another tough one, and Friday morning Bradley asked me to go home and nap while the doctors rounded. I didn't want to miss a word the surgeons might say, but I could barely comprehend the words coming out of my husband's mouth; I would be of no use to an M.D. in my state.

I drove home, hugged Mac and headed toward the twin bed in Mary Brooks' nursery. I searched her room for a blanket, a onesie, anything that smelled like her - but there was nothing. She'd been so sick all weekend that anything within three feet of her had been washed.

I crawled in bed, clutching a blanket she'd never used, and pulled the covers over my head. I missed eight phone calls in the next two hours with the phone just inches from my face; I slept harder than I ever had and woke up just as hard, wondering what I'd missed and how long I'd been gone.

My best friend had driven up from Atlanta that morning and was with Bradley as the doctors rounded. She translated their med-speak for me, arranged for another friend to bring Chick-fil-A meals to my house and we had a little girls' lunch, plus Mac. It was perfect.

I drove back to the hospital ready to push every car off the road, seeing each as an obstacle between me and my girl. I had never left her that long, especially not there.

Walking in and seeing our bundled-up little bean gave me a surge of happiness and genuine excitement I hadn't had all week. There she was! Those hours were just the break I needed to regain a few much-needed brain cells.

While we didn't get game-changing news about Mary Brooks that day, I felt so bolstered by a little rest and non-medical conversation that I knew I'd be able to hang on.

The doctors' main focus at that point was seeing MB's bowels "wake up." Her urine output was still low, but she was having both gas and dirty diapers (no small feat for a baby whose intestines have been manhandled), so we weren't sure what to think.

The tube pumping liquids up from her stomach was being monitored every four hours, its output measured and recorded for the doctors. I held my breath six times a day as the nurses measured in ccs whether Mary Brooks' GI tract was holding its own.

Every time it dipped, I rejoiced. Overall, though, we were never given a number to hit, a goal for getting that dreaded tube out and allowing MB to have her first nutrition in a week.

One resident let it slip that day that Mary Brooks' tube output was three times what they hoped to see. I was gutted. Three times too high after four days? Were we going to be here forever?

MB had unexpectedly (and providentially) sidestepped the devastating complications doctors anticipated from her surgery, given the time that elapsed between her first symptom and the surgery. Sadly, that didn't guarantee smooth sailing afterward.

If she wasn't able to decrease that tube output significantly, and fast, we'd be entering a new territory of 'what ifs.' What ifs so big that the surgeons wouldn't even spell them out for us, likely knowing that MB had a mother who could take a kernel of fear and run with it.

In my daily email updates, the tube output was my major prayer request. I didn't miss many meals that week, thanks to kind friends and nursing mom meal trays, but I knew our girl had to be hungry and suffering greatly from the intestinal "rest" she got with no IV nutrition or milk.

Every day I told myself this would be the day, but in truth I had no idea when the tube would come up. I thought pinning my hopes to a particular number would be encouraging, something to work toward. Then that resident absent-mindedly revealed that we were so far off the mark no hoping would be involved. Just prayer.

With a few more days before her treatment would change course, and not in a positive way, I finally had numbers to crunch. Scary numbers. A goal I felt we could never meet. So we prayed. Our hearts stopped as the nurses poured out her tube contents, and we saw slight improvement but knew her output was still twice what it should be.

In the hours and days after the surgery, most of Mary Brooks' pain was from the incision and the general shock of things. Much like us, she wasn't quite sure what was happening or where she was.


After that initial discomfort wore off, her hunger really set in and a host of new concerns popped up. She was doing fairly well, but not wonderfully. Looking stable, but not pushing ahead. Her sleep habits were spotty, and she spent her waking times alternately sucking furiously on her pacifier and choking on her tube.

I'll never forget the sound that came out of her mouth when the tube moved in ways it shouldn't have; she would wince and open her lips, sounding like a vacuum cleaner was within. The tube needed regular adjustment to work properly, and the suction made her feel like she couldn't catch her breath, it seemed.

Friday had been an easier day, but the facts and our situation were unchanged. My grandmother and her husband came up to visit, and my in-laws took a break from watching Mac to see their granddaughter. That night Bradley went home to eat dinner and put Mac down. The day both crawled and flew by.

That night, after a difficult day for her, I expected Mary Brooks to be up crying again. In a tiny miracle, she wasn't. She rested. We rested. We woke up before dawn confused - what time was it? was she ok? how had the nurses come in to check her hourly without waking us, those nighttime ninjas?
Sunday we were finally filled in that you can nap with your baby! 
Crib sides drop and you can actually snuggle these sweet patients!! 
How is this not standard 'welcome to your room' info?
There's nothing pleasant about waking up on the peds floor, but that morning was the happiest we'd had yet. And the best part was the report we got from our nurse - MB's tube output had dropped big time. The difference was HUGE.

Can you imagine that I, the queen of all worriers, caught a few hours' shut-eye and the world kept spinning? And, most inconceivably, our situation improved without my being awake to force it to happen? Color me surprised - I don't in fact run the universe. And I've never been more pleased.

Residents popped in and out early that morning, all very positive about the progress but reticent about next steps. Our surgeon came in and, in the span of thirty seconds, gave us the best gift (sorry, care package givers) we'd seen all week: an order to clamp the tube and, if no complications arose, take it out later that day.

I texted everyone I knew. I praised God and had visions of Mary Brooks eating up a feast of Pedialyte and milk that weekend. I very nearly peed my pants with excitement. PROGRESS!

The tube was clamped at 8:00 am, and Mary Brooks was to wait four more hours before the tube came out altogether. So long as there was no vomiting, she was golden. The anxiety and anticipation was more than I could handle; I'm so glad I had a reason not to watch the clock.

I put on my toddler mom hat and left to take Mac to a bouncy house birthday party, filled with joyous children and their casually chatting parents. I was a zombie-eyed, phone-checking, jumpy mess of a mother, but I was there. And Mac, having been through the wringer as much as anyone that week, stuck out like a sore thumb, too. Fun as such shindigs are for preschoolers, we just weren't in celebratory moods.

At noon our girl was tube-free. I returned a crying Mac to our home and flew, sniffling myself, back to MB's bedside. I found our girl resting and at peace. Hallelujah.

I peppered the nurses with questions and, once a surgeon was tracked down, finally got an answer: If no issues came up Saturday night, Mary Brooks could have clear liquids on Sunday, ten full days after her last real meal. Praise God.

Once the good news started, the week-that-would-never-end seemed to pick up a bit. Grandparents came and went, quiet moments were tolerable (not punctuated by suction and screaming) and we saw that we might not reside in room 6507 forever.


Saturday was another relatively easy night. We probably got five hours of sleep total, which is about as much as you can ask for under such circumstances. Sunday dawned to what had become our routine: Anne awake to pump, quick shower, hospital breakfast tray (the only standard issue meal I could stomach), med students, residents, a lactation consultant and, whenever they could get in, a surgeon rounding.

Our surgeon surprised us by coming in early. Super early. I was still pumping under a blanket, it was so early. He asked if I was ready to give her some milk and skip the clear fluids. Uh-hunh. Did I have any milk available? " Like what I'm making right now?" He'd had no idea.

There was genuine laughter, a joke about a tip jar (from me, mind you, as punchy as exhaustion makes me) and a confirmation that, yes, this was happening.

I had to get away and take care of Mac (another story for another day), so the Lord again spared me from the anxiety of waiting after those first two bottles. Would she vomit and get the tube placed right back in? Would there be signs of further GI tract troubles?

Happiest baby ever - milk coma from 1oz.
Mary Brooks got half an ounce first, then two hours later an ounce, then two hours later, when this anxious mama returned, she was able to nurse. And boy did she. Ten days apart and she acted as though it was any other meal on any other day.

Lactation consultants had filtered in and out for days mulling over how we could make breastfeeding work if she couldn't nurse after all this time apart. How to keep my supply up and avoid giving formula to a baby who needed the simplest, most basic forms of nutrition after her trauma. I was so concerned about how this worked and....it just did. Bless her famished little heart.

Someone asked how I was that night and when my "I'm well, thank you" rolled reflexively off my tongue, it was true for the first time in a while. I knew that no matter how long we had left, we'd be okay. We were getting there, wherever there was in the scheme of the healing process. Home was a heartbeat away.

3 comments:

~Kristen~ said...

I've written and erased a comment here about five times. I can't find the right words. So I'll just say this: I'm here, reliving this journey as you record it, crying with you and continuing to pray with you every step of the way. You are one in a million, my friend, and I love you dearly.

Sweet Caroline said...

Gosh Anne, I agree with Kristen...I get so emotional every time I read this. I don't know how you did it, you are an AMAZING mom! I am SO, SO glad that sweet girl is all better now. Hope Mr. Mac is doing well too:)

Life and Times . . . said...

You have no idea who I am. I started reading this because someone retweeted you. What an amazing, tragic, and miraculous story this is. And this line "Can you imagine that I, the queen of all worriers, caught a few hours' shut-eye and the world kept spinning? And, most inconceivably, our situation improved without my being awake to force it to happen? Color me surprised - I don't in fact run the universe. And I've never been more pleased. " is one of the most beautiful and truthful things I've ever heard. Thank you for sharing.

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