There's no place like......
HOME!
After nearly two months of living out of suitcases, it was absolute paradise to be back in our own space. Our own beds and pillows, our couch and TV where we could watch whatever we wanted, our own schedule so that we could sleep and wake up whenever we wanted (well, as long as Gabi allowed it, of course). The relief was palpable between us. While the convenience of having Mom and Dad so close was a blessing, being away from our own home still left a tinge of a feeling that life was still rather out of control. Here, just walking in the front door took a load off of both of us. We could breathe easier. Maybe we could even find a schedule again!
Still, when John returned to work shortly that next Monday morning, my heart flipped into a pounding rhythm. The familiar terror returned as I faced an unending string of days full of caring for this fragile little child all by myself. The caring didn't scare me; loving her was easy. It was the possibility of failure that left me edgy and slightly tormented. We still weren't out of the woods, as much as I'd hoped we were. Every checkup reminded me of that, as they repeated the same questions, checking her health down to the tiniest detail.
To add to the stress, the last hospital stay and subsequent weeks of late nights and early mornings at my parents had destroyed all sense of a schedule for our tiny princess. As dusk settled each evening, I dreaded the long night ahead, and dreamed of just one full night of sleep. But blown colostomy bags and a feeding schedule repeatedly shot my dream to pieces.
Just days after our return home, Gabi turned from high maintenance to even higher maintenance. Her cold refused to clear, and she began to cry at every feeding. Was she hungry? Not hungry? Had an upset stomach? Couldn't breathe well enough? Who knew. All i knew was that it was incredibly frustrating to see the one event that normally calmed her down turn into a screamfest. My guess was that when her sinuses cleared, she'd be more calm, but instead, after a week, her screams became louder, and lasted longer. I mentioned it to the surgeon, who quickly guessed that she was simply colicky. I wanted to cry; to go hide under my bedcovers and never come out. Like I'm not already stressed enough, Lord? Seriously!!!
The screamfests became a set-your-timer-by-them regular event. Now they started about a half hour after she ate, and lasted for a full hour, sometimes more. The only thing that calmed her down was to wrap her around my waste, holding her tightly and swaying gently, but my arms could only take it for so long. At her regular pediatrician's office, I again questioned this behavior, but he assured me, as her surgeon had, that we simply had a colicky child on our hands.
Two matching opinions...apparently that's what it is! But I began to dread each day with this child. The never-ending wails, the stench of the colostomy, the constant edginess, the sleepless nights...could it possibly get worse?
It could, and it did.
The nights turned into long stretches of torment as Gabi began to refuse to sleep. On occasion, she'd sleep in John's arms, settling into his warmth for a blessed couple of hours, but that was the extent of her rest. The days were no better. This child was a machine, living on nothing, and we were completely bulldozed.
By the end of January, I was a sobbing mess. I cried when John left for work in the darkness each morning, knowing the insanity that would fill my time alone with her. I was crying when he returned home, emotionally drained and physically spent, Gabi's screams still filling the air when he walked through the door. I cried for the rest I desperately needed, for the frustration that was a constant companion, for the unknown terrors that we seemed to constantly face. If I was honest with myself, I'd have to admit it: I hated this crazy life. Hated every bit of it. I could not comfort my child, could not figure out how to meet her needs, and I secretly believed she didn't even like me. How could she? There was no peace in this house for anyone.
In desperation, I mentioned Gabi's behavior on our next visit to her gastroenterologist. He was a tall, gray-haired, no-nonsense gentleman who perpetually seemed to be in a hurry. He casually mentioned that she might need to be tested for GERD, or acid reflux. I'd never heard of such a thing in a child; I imagined roly-poly middle-aged men who smelled of salami and burped all the time as the typical candidate for acid reflux. That was NOT my child. But I also knew it could be caused by stress...was my baby girl that stressed out? Was she going as crazy as I was???
Dr. B scheduled her reflux test for the end of February. Another test, another hospital visit, another round with the insurance company. Ugh. I was just tired of it all.
We received the pre-admission paperwork in the mail a few days later, and I began to read through it to find out what we could expect. One notation caught my eye: NPO after midnight. What? A four-month-old is supposed to go eight hours without food??? I wanted to scream. This was insane! In a slight nod to the inconvenience of such a request, they had scheduled her as the first appointment of the day, at 8 a.m., but still, it would be a hellish experience. What happened when she woke up at 3 or 4 or 5 a.m., starving and looking for food? How were we supposed to pacify her for all those hours until her test? Was this honestly our only option? Was there no other way to test for this? And if she didn't have it, and was simply colicky, we'd be going through all of this for nothing.
Dread rumbled in my stomach, getting only worse as the test approached. The night before, we woke Gabi just prior to midnight so she could get one last feeding in. Miraculously, the evening didn't go quite as rough as I'd imagined, but when it was time to dress her for the hospital, she awakened hungry and complaining. Talking was minimal and voices kept low; movements were quick, precise, designed to stimulate her as little as possible, until we slipped her into the carseat and left in the dark for the 40 minute drive.
Upon arrival, we were directed to the basement of the hospital where Radiology was located. It was slightly dark and had the feeling of being in a cave. Still, for 8 a.m., it was a hive of activity. Patients were wheeled around in chairs, beds, walking with walkers...patients were everywhere. After checking in, we were ordered to strip Gabi to her diaper and wait in the waiting room. Alone there, we stripped her, then wrapped her in a warm blanket and waited. A morning news show chatted animatedly from the corner TV, but we sat quiet and still, wanting to keep her as sedate as possible, even while we were still wiping sleep from our own eyes.
Eight o'clock arrived, and passed. Another family arrived with a small toddler, a cute, curious child who was intrigued by Gabi's small size. We smiled tolerantly while keeping one eye on the clock. 8:30 rolled past, and Gabi began to cry her hungry cry. Pacing the open hallway, trying to pacify her with nothing, we were watching the minute hand tick off time, while simultaneously feeling our frustration level climb at the same speed. She's a BABY, and she needs to eat! Let's get this DONE! Gabi's cries became louder; she had now gone nearly nine hours without food.
Her cries turned quickly to loud wails, but the nurses behind the desk seemed unconcerned with our situation. The toddler across the room was called back, and I nearly wailed myself. What are these idiots doing? She's FOUR MONTHS OLD, for heaven's sake!
Techs waltzed in and out of the exam rooms, heads down, reviewing paperwork and refusing eye contact with anyone else. I pushed aside the urge to grab one by the arm and force her back into the room to examine my child. Gabi was now in full scream mode, alerting everyone to our problem, but no one cared. We took turns wandering up and down the hallway, around the tiny waiting room, trying to calm her without success. My mother's instinct continually searched for solutions to the problem, and I had to squash the urge to just pull out the bottle that waited in the diaper bag, and tell the radiologists to deal with it. It was clear we'd been lied to; despite telling us she was scheduled first, she clearly wasn't. Who would do that to a preemie baby? What idiot set this up? I wanted to find him or her and let them see the effects of their stupidity.
By 9:30, I was fuming up and down the halls, spitting nails under my breath every time I passed the nurse's desk. Gabi would settle briefly every few minutes or so, presumably to catch her breath, then begin wailing again. Finally, a tech exited an exam room and called our name. We went flying over, only to have her tell us they were running behind (oh, really?), and it would be a few more minutes.
Her few minutes turned into 45. By the time they finally called us back, Gabi was beside herself. She was red from screaming so hard, for so long, and was no longer settling every few minutes to catch her breath. Her hunger combined with a fierce anger to make a lethal combination for John and I; there was no longer any way to comfort her. Still, the techs were unconcerned, and moved slowly, chatting as though they had all day and seeming very disorganized and unprepared.
After all this, they pointed to a table in the center of the room, and advised us that she would be strapped down, fed a chalky substance, and then rotated back and forth to see if the substance refluxed. I stared, wondering if we should even bother at this point. She's so hungry, she'll eat anything right now, and she's so upset, she's bound to puke everything right back up!
They did exactly as described, though I hadn't realized how tough it would be to see them strap down her arms and head and essentially make her immobile. She screamed loudly and fearfully now, until the bottle was placed in her mouth. The chalky whiteness went everywhere; she ate like a greedy bovine. I stared, astounded that that was my own, slow-eating child. The entire bottle was drained in what seemed like seconds, and then I glanced up at the screen that monitored her insides. The contents of the bottle were moving down her esophagus, glowing like a slow-moving worm on the screen. The tech gave instructions to rotate the bed, and I watched as Gabi's tiny eyes darted wildly around as her world began to spin. Within seconds, the screen changed as the substance moved back up, and Gabi quickly vomited all over herself.
Voices blended together as everyone agreed that her test was positive for GERD, but I sat, fuming. We waited more than two hours for THIS? This was NOT an accurate test! You don't starve a child, then infuriate her, then scare her, THEN see if she can keep food down! Why don't they just test it after she eats a normal meal?
But I was just a mom, and what did I know? We were finally released to clean her up and take her home, which we did. She wolfed down a bottle before we even left the waiting room, then went home and slept for a few hours, recovering from her stressful ordeal. Dr. B ordered not one, but two different meds to treat her reflux, putting my four-month-old's med count at three.
That afternoon, we picked up both prescriptions and began them immediately. After her extended nap, the day proceeded normally, although it did seem that the meds were helping a bit. She ate around 9 that evening, and surprising, she quickly fell asleep on a blanket in the living room floor. Exhausted, but still needing some mental downtime, we lay together on the floor next to her, chatting softly about the day. She would wake again and eat around midnight, so we decided to stay where we were and rest until she awoke.
At 4 a.m., John and I awoke with a start to find ourselves still on the living room floor, shocked to realize that finally...finally...she had slept through the night.
