Just Me

The Story, Part XX

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.

The good, the bad, and the ugly

The good:

Still pregnant. Still busy. Going car-shopping!!! (Anyone want to buy my beloved Ford Escape???) Another ultrasound, which shows baby Jackson DOES have both kidneys! Spending an hour watching him move and kick and pose for a head shot or two. :) Heading out tomorrow for a Girls' Weekend with a childhood friend - WAHOOOOOO!!!  Shopping, eating out, scrapping, chick flicks...fun, fun times. :)  Working on a big scrapbooking project that I can't even talk about, but is SO COOL and so dang fun to be involved with!

The bad:

Weight gain. High fluid levels. (Related? DUH, doc!) Not sleeping well. Repeatedly being asked if I'm carrying twins, or if I'm due any day. Oh, and don't forget the two cranky, strong-willed children.

The ugly:

A fat, pregnant mother of cranky children who hasn't slept well in a while. ;)

Well, from that perspective, looks like the good far outweighs the bad and the ugly. That's always a good thing, and means I shouldn't complain, eh? ;)  I just wanted to drop a quick update and say hi to all the faithful friends who are still hanging in here, supporting me. :) Thanks for that! I mean it! I'm overdue for another chapter of The Story, I know, but unfortunately, it'll have to wait till next week. Look for it on Wednesday! And I finally DO have some scrapbook pages photographed to share. I'll try to throw those up tonight or tomorrow.

A belated Happy Mother's Day to all my mothering friends! And have a FABULOUS weekend! :)

The Story, Part XVIIII

Gabi's first Christmas passed in a slightly chaotic rush of people and presents and platters full of food. It was fun to show off our sweet baby girl to my extended family, even though she couldn't be passed around yet.  By mid-afternoon, however, my body refused to function anymore without rest. I snuck away to grab a nap, which was most definitely the best present I could imagine. When John came looking for me an hour later, I could hardly wake up. My mind screamed for more sleep, and my limbs refused to support me in my quest to simply sit up. But I had slept so soundly, and it felt SO GOOD! I was still exhausted, but I had no regrets. I made my way back to the party.

With the celebrations over, John and I began to plan for our return home. Close church friends were moving out of state right about that time, and Mom and Dad had scheduled a party in their honor, which was to take place on the 28th. John's birthday was also coming up, which my family would again be gathering to celebrate. Figuring it would be less hassle to simply stay put than to have to travel back to their house twice over the next few days, we decided to prolong our move until the New Year. Gabi was also developing a bad cold, which likely meant another trip to the Pediatrician; yet another reason to stay put for a few more days.

I knew that a cold wasn't a big deal; lots of kids get them. But with her small size (she had only now finally reached the ten-pound mark), I also knew that her immune system remained fragile, and I wasn't sure if I could let her ride this out, or if she needed a little help from the doctor. So, off we went to yet another appointment.

My regular pediatrician wasn't in, but we were referred to one of his partners. A young doctor, she had only recently joined the practice, fresh from medical school. While it made me nervous that she had so little experience, I also knew that a simple cold was not a medically complicated symptom for any doctor to diagnose and treat. I let my reservations fall, and carried my girl back to the exam room. 

The doctor looked Gabi over quickly, and gave me a prescription for an antihistamine to help her breathe more easily, with the comment that it would probably make her sleepy. I was relieved that she would soon be getting more rest, (and thus, so would I). We were out the door in short order, headed for the pharmacy, and when we arrived home around lunchtime, I gave Gabi her first dose.  She napped fitfully that afternoon, which was not unexpected with her stuffy nose. I, on the other hand, was anxiously awaiting for the medicine to take full effect, so she could begin to breathe easier, as cranky babies were decidedly unpleasant to be around.

While she slept, we all prepared for the Bon Voyage party for our friends, which was scheduled for that evening. My siblings and their families arrived, the food was out, other guests began to show up, and the party was in full swing. Gabi had awakened with a howl, which meant she was hungry. We were quick to round up her bottle and feed it to her, which she downed in an instant, but she remained a bit fussy. Always on guard now against any out-of-the-norm behavior, John and I discussed it and attributed it to her inability to breathe well. She was due for another dose of medicine, so we managed to get it down her and waited for it to take effect.

An hour later, she was still not herself. Fussy and demanding, she wanted only to be held, which we did, but even then, she would not settle down. Finally we gave in to my mother's suggestion to let her cry it out a bit. Closing the door to the bedroom, we finally joined the party.

But the mother in me couldn't relax. I could hear her crying, and it was quickly turning into screams and howls of anger. We could finally allow her to cry some, now that she'd gained weight, but with the fits she was throwing, I still worried that it would be too much for her. Sneaking back into the bedroom, I scooped her up and snuggled her against my chest, whispering soft words to calm her down.

It worked, but only momentarily. She was mad.

I wandered around the room, bouncing her gently, singing softly. My efforts were met with louder howls. I kissed her gently, talked to her in soft tones, trying to distract her. Still no luck. I switched her to as many different positions as I could, trying to find the key to her happiness. The screaming continued. After a half hour, John came looking for us. Though my arms already ached, I waved him off, sending him back to the party with assurances that she was just fussy. Another half hour later, Mom came looking for us. Hearing Gabi's cries, she assured me she was just throwing a fit, and I should let her cry it out. I nodded in agreement, and when she left the room, I tried again to wrap up her and lay her back in the bed. Her howls only increased in intensity. I slipped quietly from the room, but when the door closed behind me, I could go no further. The happy chatter from the living room wafted back to where I stood, and I felt torn between wanting to spend one last evening with my friends, and feeling a decided unease about the screams coming from behind me.

Moments like these made me despise my own inexperience. Was it really a fit? Or was it something more? My heart was beginning to pound; my gut was telling me to pay close attention. In an instant, I knew who to go to: my sister, mother of four, and NURSE. She'd have both the maternal experience, and the medical know-how to know if I was overreacting or not.

Slipping out to the party, I whispered my concerns in her ear. She was non-committal, but eventually made her way back to the bedroom where Gabi still lay screaming. Scooping her up, she mimicked my earlier attempts to soothe her, without luck. "I don't know, this just isn't like her." I made my case, thin as it was, anxiously waiting for her judgment. "I think something's wrong." Mom, apparently noticing both of her girls missing, entered the room. She reiterated her opinion and reminded me that sometimes babies can scream the way Gabi had for over an hour, and that it was not unusual. Not wanting to argue, but still looking for wise input, I pointed out that her behavior was not typical of her.  The conversation went back and forth for a few minutes as everyone debated what might be happening, and finally my sister, still holding Gabi, offered the only solution she could think of:

"If you think something's wrong, then call."

"Call." My heart thudded. Were we on the front end of yet another uninmaginably horrible hospital stay?

Making "the call" meant utilizing a scrap of paper that was tucked tightly, safely in my purse. A blue-lined post-it note with three handwritten phone numbers on it. I'd be calling the number identified as "H", for "Home", and that handwriting belonged to Gabi's surgeon. She'd given us three different phone numbers to reach her, after the first nightmare had happened and we'd nearly lost Gabi. I was unbelievably shocked when she'd first handed me her private information, and felt a surge of gratitude that she was willing to go to such lengths to help us. But now?

Now I worried I was just an over-reacting mother. It was only a cold, for goodness sakes. Not only that, but it was a weekend, and it was fairly late at night, to boot. Was I crazy, calling her at home? Would she regret giving me those numbers? And what was I going to say? "Well, she has a cold, and she's really fussy..."  She'd think I was nuts.

I was sure it was a huge mistake, but if I'd learned anything over the past few months, it was not to ignore my gut feeling, and my gut feeling was that something was really wrong. Digging the paper from my purse, I left Gabi screaming in her bed and slipped through the house out to Dad's office. Dialing the number with shaky fingers, my throat began to tighten as the ringing began. When a man's voice answered, I asked quietly for the doctor, and I heard the irritation in his voice as he called for his wife.

Her tired voice came on the line, and I identified myself. She was polite in response, but not overly friendly. Quickly I explained the situation, and bolstered what I knew sounded like a ridiculous case with, "She just won't stop screaming, and that's not like her. I think something's wrong." She suggested I take her to her pediatrician in the morning, to which I responded that I already had, and I told her that she was already on medication. She then asked what the doctor had prescribed, and when I told her, her voice immediately relaxed. "Oh, well, that's what it is then. That's an antihistamine, and they don't usually prescribe those for little babies. Antihistamines can make babies feel like they're going to jump out of their skin. She's probably going to be this way for a while, then, until the medicine is out of her system."

Simultaneously stunned, relieved, and furious, I apolgized, thanked her profusely and hung up. Seriously? That stupid doctor didn't know this? How the heck can she be a PEDIATRICIAN and not know this??? I was livid.

Racing back to my still-screaming daughter, I scooped her up with a new understanding of her feelings. Glancing at the clock, I mentally calculated: "It's an eight-hour med, and she took it four hours ago. That means four more hours until it's out of her system. But surely she can't have the energy to scream like this for four more straight hours, can she? She'll probably fall asleep before then."

Ha.

I had a lot to learn about the predictability of babies.

When the party finally ended a couple of hours later, Gabi and I were still pacing the bedroom floor. She was still screaming; my arms were aching, and despite knowing what was wrong, my patience had still been worn razor thin. The rest of the family quickly retired for the night, so I moved out to the living room and the pull-out bed. John, still recovering from his long hours at work and the flu, had retired to our room. But Mom, still feeling bad for her erroneous assessment, came out to the living room with me, and took turns pacing the floor with her. We chatted as quietly as we could, weaving our words around the patterns of Gabi's screaming fits, handing her off to each other every half hour or so. Sleep was not to be had; neither was sitting. A simple change of position to alleviate the stress on our arms infuriated her and intensified her cries.

It had already been a long night; I kept glancing at the clock, praying the medicine would wear off. At 2:00 a.m., I finally sent Mom to bed, insisting she had helped more than enough, and that this was a mother's job. I mentally reasoned that she would likely settle down and fall asleep any minute anyway, but still, the madness wore on. She screamed, and screamed, and screamed some more. If I moved a finger, she jumped a mile and howled in anger. By four a.m., I was swallowing back my own howls. She'd now been screaming for eight straight hours, and I could hardly move. I had to sit down, even knowing that it would infuriate her. I tried the chair, the bed, the kitchen table, and when I was still, she would quiet for barely a moment, then begin to howl all over again.

Tears now streaming down both our faces, I was beyond reason. To think that my fragile, little girl could scream so hard and so loud for so many hours was shocking. To remember that it was due to a doctor's incompetence was infuriating. I had visions of hauling my child over to her house at this ungodly hour, and dropping her in that hapless doctor's lap with a "YOU did this, now YOU fix it!" command while I recovered from such a horribly sleepless, nerve-wracking night in my own warm bed.

At six a.m, I could no longer stand up. We were due to leave for a two hour trip to my in-laws family Christmas at 9; I couldn't go without any sleep whatsoever. Rousing John, I begged him to take her for just a couple of hours so I could rest. He slipped out to the living room, and I warned him about what to expect, then I slipped into his warm spot in the bed. Amazingly, I heard not one cry from her after that, and it wasn't because I was sleeping so heavily. Before my eyes fell shut, I realized that she'd immediately fallen silent for her father.  Seriously??? What is THAT about? Too drained to be irritated for long, I gave myself over to sleep.