Saturday, October 29, 2011

Return of the Night Shift

The day we moved into this house we found that we could not fit a queen-sized box-frame around the turn at the bottom of our stairs. Apparently queen-sized beds didn't exist in 1890? Our only choice was to cram the more moldable mattress up the stairs and just lay it on the floor. We were fine with this arrangement at the time, but I remember thinking to myself, "The only time this could be a problem is in the last couple months of a pregnancy." And here we are. Not only is it difficult to get oneself out of a bed on the floor when one can no longer bend in the middle and one's middle weighs an extra 20 pounds, but pregnant women are also plagued by the need to use the bathroom somewhere between three and ten times in a night, and the only bathroom in this house is downstairs.

On top of my need to catapult myself off the floor and traipse down the stairs to the bathroom every hour or so, the children have decided to sabatoge most of the remaining minutes in between my regular travels. I had enjoyed a long period of relative night-time peace, but somehow the stars have aligned against me in the last week or two and all four children have decided to become nocturnal hunters. I am the prey.

Toby has once again decided to take in most of his liquids at night--it's only water, I have no idea why this is so appealing to him, but because of his unknown kidney condition I am hesitant to limit his intake--this, of course, causes him to flood even the most absorbent night-time pull-up. Somewhere around 3am, if I haven't remembered to change him earlier, he will wake up screaming that he's wet and if I don't hear him screaming, I'm sure to hear Hannah yelling at him to be quiet. I change his pajamas, lay a towel over his wet bed and call it good enough, but he wants more water. Sure, little buddy, why not send Mommy down the stairs yet another time tonight so you can wet through your pajamas again before morning? And down I go, and up I go, and back into bed I flop.

Not long after that Emma will wake in a coughing fit. She has always been sensitive to viruses. Any little bug will set her wheezing and coughing like a life-long smoker for weeks, and she happens to be going through another several-week battle with some germ. She will thunk wildly as she coughs, fling open my door and plop herself down on the bed I have all set up for her on the floor beside me. I will sigh, give my pillow one last hug, and heave myself back up out of bed again. At least, because I've anticipated this visit, I have a dose of cough medicine and the nebulizer treatment all set up and ready to go--no more trips downstairs this hour. But alas, Emma has drained her water bottle as well and the cough medicine tastes nasty--down I go again, and up I go again. She drinks, she breathes the albuterol mist, and her cough quiets at last.

I want only to rejoin my long-lost pillow in bed, but I decide that I'd better make a last bathroom stop, since I'm already out of bed. Down and up again. I flop in bed, and endure at least ten minutes of protesting squirms from the baby within. Finally he quiets, I relax, and I begin to drift to sleep...until Emma drifts to sleep just before me and begins to alternate wheezing inhales with snoring exhales. She sounds like an elephant slurping in a trunk-full of water and blowing it back out again every two seconds. I contemplate waking Matt and asking him to carry her back to her bed, but her wheezing is just severe enough that I figure it's safer to keep her beside me, just in case she gets in distress. I lay awake trying to find a song that fits the beat of her snoring, just to amuse myself, and I finally drift to sleep.

It won't be long until Hannah sneaks in to ask me if that thunder she heard was a normal thunderstorm or a severe thunderstorm; or Naomi wakes to use the bathroom and, because her ankles don't bend well, she thunks down the creaky stairs with all the grace of a hippopotamus; or Toby wakes again crying in delerium from a bad dream; or Naomi wanders in to let me know she's having trouble sleeping and ask if it's OK to get up at 5:30am; or Matt's alarm clock goes off because he has to work early today.

Some mornings the children have been angels and have blessed me greatly by waking quietly, playing peacefully, and waiting patiently while Mommy sleeps in, but then there are mornings more like this morning. This morning I lay listening to Emma and Toby fight over and over in their room and when I called Toby in to scold him for taking Emma's toy he informed me that his pajamas had orange juice on them. When I asked him why he admitted plainly, "because I spilled it...all over...and it made a big big mess."

Today I was also blessed to develop Emma's cough. This apparently disturbs the little baby within as much as me since he has to do a few sommersaults everytime I cough. I probably need sleep more than ever tonight, and I probably ought to head to bed, but I doubt I'd find much sleep there. Here's hoping this virus will soon leave us, the children will give up their nocturnal roamings, and I will find rest again before my fifth sleep-thief arrives. Then again, maybe this is good practice for what lies ahead when he comes.

Tuesday, October 25, 2011

Restless Nesting: Hinges and Doorlatches

On February 24th, I posted Cordelia's Hinges to share how I was enjoying even the painstaking work of cleaning up the details of our new home. At that time I had high hopes of continuing to clean hinges, window pulls, and other antique details, but once I found out I was pregnant in March, that all came to a screeching halt. Nausea, fatigue, and concern for the baby's safety when working with chemicals and possible lead paint left my project counter covered in tools and my hinges covered in paint.

Recently my nesting urge has picked up, and while I only meant to clean off that cluttered project counter, I couldn't resist indulging in a little bit of hinge-cleaning on the side. Don't worry, I was painstakingly careful about the baby's safety. I scraped the paint outside in the fresh breeze while wearing rubber gloves. I covered all chemicals with lids and left the doors open to ventilate the house. And I worked in small intervals with plenty of rest and fresh-air breaks. He was safe, I promise.

There was one door catch on a door to my kitchen that had been bothering me. I think it cleaned up pretty well.

And one very visible door, off of my living room has been glaring at me with broken, ugly hinges for far too many months now. This simply had to be remedied. When my front door was replaced shortly after we moved in I saved the old hinges before it was thrown away, hoping to one day clean them up and use them to replace some broken hinges. Here was the result:

Top hinge before

Bottom hinge before

Top hinge again

Cleaning up the hinges I had salvaged from the old front door

Hannah said she liked the pink hinges better, but I had to disagree

Off comes the pink

Top hinge after replacement

Bottom hinge after

A full-door view
I am pleased with the results, but strangely enough, it seems that hanging an enormous solid-wood door on hinges when seven-and-a-half months pregnant does serve to exacerbate both heartburn and backache. Therefore, with this little stunt out of my system, I have retired my exacto knife and cleaning chemicals to the basement, where they shall stay for at least a few months. The rest of the antique detailing can wait: I have enough general organizing and scrubbing to do to satisfy my nesting instinct for the next few weeks.

Tuesday, October 18, 2011

Low White Cell Counts: October Update

I was a little nervous driving back to the children's hospital today after the flat-tire incident last Friday, but once we'd passed the infamous corner where I'd waited three hours for a tire change I relaxed, the morning sun lit the gray October sky, and I almost enjoyed the drive. It was an early morning today trying to get all four kids out the door in the black night of 6:00am. The younger three enjoyed the day with Matt's sister and her kids, Naomi and I had plenty of time together again, and I wasn't plagued by too many contractions as I drove.

The whole day went completely on schedule, in fact, and our appointment, which was certainly necessary, didn't bear any surprising new revelations or begin any new crises. Naomi's GI doctor said that Naomi's spleen had enlarged another couple of centimeters, and while her low white cell counts and enlarging spleen are certainly signs that the liver fibrosis is progressing and causing the pressure in the portal vein to rise, that is exactly what we knew would happen, and it is happening very slowly. She (the doctor) did not seem at all worried at these new signs--they are simply a few more steps along a road we already knew we were traveling.  She still felt that major complications such as severe immune deficiency and sudden GI bleeding were probably years away.

The doctor also clarified that Naomi's white cell counts might not actually rise out of the "normal" range when she is fighting infection, something I wish the ER doctors had known when they kept insisting that Naomi's white cell counts were "normal" and I kept saying "but they're high for her." It is possible that, with Naomi's condition, boosting the white cell counts into the "normal" range from "below normal" is all Naomi's body could muster to fight infection. However, while this might confuse the ER doctors, the GI doctor did not feel that Naomi was severely immuno-compromised yet or that she was in danger of not being able to effectively fight infection.

So, while Naomi may one day face severe immune deficiency and life-threatening GI bleeding, that day is still a good distance down the road. For today there is no quarantining Naomi from germs, life-flighting her to the children's hospital, or planning major surgeries. Today the doctor ordered some blood work to re-check on the status of the celiac disease, the liver function, a blood count, and some vitamin levels that have been running low. She decided she would like to see Naomi every six months now, instead of every year, and she gave us some information on being involved in a new multi-national study on infant siblings of children with celiac disease that is designed to settle the debate about whether early introduction of gluten to babies with the genes predisposing them to celiac increases the risk of the child developing celiac disease later in life.

Today we drove home under the gray October skies and dragged three reluctant siblings from a house that was clearly more fun than our own. Today the three girls are setting up a pretend veterinary clinic and doctoring up a line of illness-and-injury-stricken stuffed animals while I cook dinner. And I'm thankful for today.

Friday, October 14, 2011

Flat and Futile

First, before you say "typical girl" to yourself or "that's a pregnant woman for you," let me remind you that the way we process life's circumstances and the decisions we all make are based on the previous experiences we've had. Shortly after we were married one of the rear wheels on Matt's old Ford Escort began grinding and the back end of the car swaying. We were told by a mechanic then that the wheel had nearly fallen off. We were also recently told by a mechanic that something was wrong with the back end of our Toyota Camry that caused it to feel a little loose and rattle, but that it didn't pose a safety hazard. With these experiences in mind, I think it was actually quite understandable that I immediately assumed that mechanic had been wrong when the Camry began to shake and make a horrific grinding noise today on my way to the Children's hospital with Naomi.

One hour away from home, I had just passed a rest stop, feeling that I could make it to the next one, when there was a sudden, horrific grinding noise from the back end of our Camry and I felt the car become difficult to control. I immediately pulled into the right lane, then the shoulder, and about ten yards further to the intersection of a small side road. Shaking with the adrenaline surge, I was adequately prepared to defend myself from any attacker, but found it more than a little difficult to think clearly. I began to hop out of the car so I could have a look at the rear wheels, but I thought, "Silly girl! What in the world am I going to see? If something is that seriously wrong with the car I might as well stay put and call a tow truck ASAP." But where was my cell phone? OK, there it is. Now who am I calling? Oh yeah, I have AAA coverage. Where did I put that card?

So I proceeded to call AAA and order up a tow truck, then my friend who was watching my kids, then another friend who agreed to drive down and pick me up, then my parents because, well, they're my parents, and then Matt's voicemail, even though I knew there wasn't a thing he could do, and finally the children's hospital to cancel Naomi's appointment. By that time I realized I needed to save my cell phone battery so I sat a minute watching the wild clover wave in the ditch beside me. Finally, I decided there couldn't be any harm now to taking a look at the back wheels, even though I most certainly wouldn't be able to see anything, and it obviously wouldn't change my situation at all.

Coming around the rear end of the Camry to the passenger side, I suddenly felt utterly ridiculous. The tire was completely flat and ripped to shreds. It looked like Sasquatch had attempted to eat it for lunch. Oh. A flat tire. Right.

For half a second I wondered if I should be able to handle this myself, but 0.5 seconds later I recalled that my last lesson in flat-tire changing was fourteen years ago in driver's education class. About that time I also recalled that I was seven months pregnant and that squatting for an extended period of time while trying to turn lug nuts with all my might would probably be less than an ideal way to spend my morning.

One humiliating phone call to AAA followed to change my tow truck request to a tire change request. "Umm, so I actually looked at the car,'s a flat tire...sorry...guess I should have looked before I called you." Then I called my friend, who was nearly half-way to meet me and told her to turn around and go home. "Um...sorry...guess I should have looked at the car before I called you...oh wait...maybe I should make sure I actually have a spare tire in the trunk...hang, OK, you can go home now." And then I called my parents, and then Matt's voicemail again. Regaining consciousness, I began to compute just how late I would be to the neurosurgery appointment, and decided that I could still try to make it there after my tire was changed, if they would accommodate me showing up two hours late. Unfortunately, they would not accommodate the pregnant lady with the sick daughter and the flat tire. Rules are rules, sorry, then next available appointment is November 3rd, ma'am. So I booked us for November 3rd and wondered just what adventure I could look forward to if I went into labor on my way to that appointment. And then my cell phone battery began beeping, so it was just me and Naomi and the waving ditch of purple clover.

It was a pretty ditch, and I was thankful that it was a warm day and that I had packed lunch. I almost could have been content to wait for the service man to change my tire, except that by this point my bladder was threatening to burst. I looked back at the horizon where the giant McDonald's/BP rest stop mocked me less than a mile away. Then I looked at the warm, inviting ranch house just in front of me with the well groomed yard and the pretty mums beside the porch. I calculated the odds of a demented mad-man living in that house and grooming his mums just hoping to lure in some innocent lady who had car trouble nearby, and I found the odds fairly low. I decided to take my chances ringing that doorbell over squatting in a ditch with ankle-high clover beside a busy highway.

Naomi skipped happily in front of me to the house and we rang the doorbell...once, twice, three times, but alas, either no one was home, or the demented mad-man inside decided to wait until I died of a ruptured bladder before making his attack. Back to the car we went, where I sat looking at the McDonald's/BP sign and then the ditch, and back to the sign. About this time an old man with a white beard pulled up beside me and rolled down his window. Thankful for his gesture of concern, I opened my door and walked to his van window. "It's just a flat tire. I'm OK, triple-A is on their way," I assured him.

He wrinkled his forehead and looked at me with contempt, then remarked in all seriousness, "Didn't your daddy ever teach you how to change a flat tire?!"

Taken slightly aback, I responded, "Well, I learned thirteen years ago, but I am seven months pregnant now. I think I'll let triple-A handle it." He slobbered slightly on his beard, shook his head in utter disgust, and drove away. With that new temperature reading on the local hospitality I began to feel fortunate that no one had answered the door at the house.

I passed time in my car wondering if someone had actually slashed my tire on purpose the night before and composing nasty letters in my head to the cruel person who would do such a thing. Then I calmed myself and went over again in my head all the things I was hoping to discuss with the doctor today that would now have to wait until November 3rd.

The recent CT on Naomi's spine had shown "incomplete fusion of the posterior elements at L5," which means that one vertebrae in Naomi's lower back hadn't formed properly. Apparently this can be a normal variant of anatomy that causes no problems whatsoever, or it can accompany other spinal-cord abnormalities, namely a "tethered cord." The Internet articles had warned that a tethered cord, which is generally a birth defect but worsens over time, can cause club feet (which Naomi has) and a host of neurological symptoms as the child grows, including back pain and Naomi's newest symptom: pain trying to uncurl her toes.

I had wavered about whether or not to make another trip to the neurosurgeon to ask about yet more strange symptoms and my Internet research. Sometimes I just feel like I must be the most annoying, paranoid mother to these poor doctors. The spinal abnormality could be harmless. Naomi's club feet could very well be due to low levels of amniotic fluid during pregnancy because of her kidney condition. It's just that that explanation has never fully satisfied me since Naomi's kidney function was more than adequate when she was born, no ultrasound or measurement ever suggested I had low amniotic fluid, and her kidney condition actually causes her to pee excessively, not too little. Her recent symptoms of tight legs, worsening club feet, and painfully curled toes could be a result of tight tendons and ligaments because she laid in bed for too long in the hospital without stretching them out. But these could all point to a tethered cord as well, and that would offer an explanation as to why what should have been a routine spinal tap caused her excessive pain for weeks afterwards.

I had called the neurosurgeon two weeks ago to discuss some other concerns with him, and I had not ever received an answer. Then, on Wednesday, when I was about to call him again with my new concerns, I suddenly received a computer generated courtesy call to let me know that his office had taken the liberty of scheduling an office visit for Naomi today at 1:00pm. I decided that must be a sign that I should drive Naomi down to see him again and ask him about my new concerns.

But here I sat, me and the clover ditch and the mad-man's house, not any closer to answering the profound medical mysteries inside my daughter. I wondered for awhile if she would be better off without me constantly dragging her around to doctors appointments, but then I recalled just how much she has improved in the last year since I pushed for answers and found that she had celiac disease and a host of other food sensitivities. The stomach aches are gone, the joint pain has vanished, the tantrums have diminished greatly, and it is because I relentlessly pushed for answers. Whether I seem crazy or not, I know that I must continue to ask questions and demand accurate answers: the consequences of my laziness could be too great if I didn't.

Exactly three hours after I placed the SOS call to AAA, and just as I felt I must be succumbing to water intoxication, a tow truck arrived. A kind man hoped out, jacked up the car, popped on the new tire, and had me back on the road in under five minutes. God bless that man. He also assured me that no one had slashed my tire, but the wall had blown out in seven places as I drove to the shoulder and pulled off the road. A large silver screw embedded in my tire was enough evidence of the cause of my troubles.

I was back at the McDonald's/BP travel stop thirty seconds later. Within an hour I was safe at home, wondering why my day had been completely consumed by futility. I may never know, but I can decide to be angry with the unforgiving universe or I can decide to be grateful to the God who put a screw in my tire. Maybe the doctors appointment isn't what Naomi or I needed today. Maybe it's better if I remember that today was ultimately out of my hands, much the same way my daughter's health is. There's rest in remembering that.

Thursday, October 13, 2011

Farewell to Summer: An Apple Orchard, Lake, and Eby Home Album

Sometimes, as I sat in Naomi's hospital room, I thought about the fall we were missing: the apple orchards and lakes, the crisp sunshine and the colorful leaves. So when Indian Summer made its glorious appearance last week, I tried to make the most of it, beginning with visiting the nearby orchard last Saturday with our cousins. 

I marveled at the colorful ridge of trees just across the highway.

Even our house seemed to fit in better with the fall weather.

We watched the farmer harvest the bean field outside our front porch.

Then we went to the orchard again! This time with a home school group.

This girl gets thirsty!
Yesterday was Matt's day off for the week, and the weather couldn't have been more beautiful with sunny skies and 75 degrees, so we took the kids to a nearby lake for some playground fun and wading.

Emma looks like she's in a guillotine here :)

Beautiful swans...of course, you can't tell they're hissing at the kids!

So much for rolling up the pant legs...good thing I brought spare clothes.

Beautiful summer,...

...farewell until next year.

Monday, October 10, 2011

Recovery Week

People say that it's only after the traumatic subsides and the dust clears that we truly realize just how exhausted we are. This is probably why I haven't written anything in my blog for over a week. It has taken that long for me to feel like I have any energy or ambition to do anything but nap. Perhaps it's because I found myself buried under a mountain of dirty laundry, or perhaps because my midsection has grown to the approximate size and weight of a small mountain, or perhaps it's just that every molecule of stress hormone in my body had been expended after Naomi's last three days in the hospital, but napping suddenly took priority over all else.

Not that I've had an excessive amount of time to nap. Matt was still in training out of town all week last week, so beyond the childcare and housework falling to me, I also took the kids down to visit him one evening and swim in his hotel swimming pool. Though the evening was a success I think I've had to conclude that the days of car trips are over for me until after this baby is born.

I've also concluded that I like pregnancy less each time I am pregnant. With Naomi everything was so new and exciting, the wonders of new life within me far overshadowed the discomforts of carrying a watermelon under my skin. Now that I've experienced every wonder five times, it seems far more appealing to be the only one living in my body again. I feel slow and awkward and breathless and tired and sore, and this child seems determined to make an exit straight through my abdominal wall any minute now.

So I make an effort to lay down each afternoon now, but it is easier said than done. It takes more than ignoring the housework to get rest in this house. The baby protests with squirms and kicks each time I cease moving, and I'm sure he's crying with all his might in there. I smile and think, "Cry all you want now, baby. I can't hear you!" but those powerful kicks to my ribs can be hard to ignore. Toby has been protesting his nap as well lately, and some days I have to settle for resting and listening to him ram trucks together in the room next door. Usually my girls are relatively well behaved when I rest, but occasionally a fight does break out over who had the idea to dress the baby doll as Queen Lucy first, and adult intervention is required.

Toby, over a year ago, sleeping with kiki and vacuum
Yesterday afternoon one of my worst nightmares came to life, and I feared I might never sleep again: Toby's kiki went missing. "Kiki" is what Toby has called his white blanket with the satin trim ever since he began baby-babbling, and kiki is an essential ingredient to any peace and quiet in this house. Kiki is usually filthy and stinky, though he's washed several times a week, but Toby doesn't mind, and kiki must travel with us, wherever we should roam. Yesterday, after a long morning at Sunday School and church and a fellowship meal, Toby grew cranky in the van on the way home. I turned to grab his kiki from the diaper bag and made a heart-stopping discovery: kiki wasn't in the diaper bag.

Matt turned the van around and ran through the church building while I sat in the van with the kids, but ten minutes later emerged to ask, "Are you sure it's not in the van? Because it isn't in here!" It most certainly wasn't in the van, and Toby had no recollection of where he'd left kiki, so I joined Matt in his search, along with several others from our church. We opened every cupboard and drawer and looked behind each unlocked door. We looked under tables and cloths and couches. We looked in the nursery, the library, the offices, the closets...but no kiki. I started running through the nearby stores in my mind, wondering which ones might have a white waffle-weave blanket with satin trim in stock. Finally Matt got a key and unlocked a Sunday School room that had only been unlocked for a smidgen of time before the church service, and there, tucked fully away within a craft-supply cupboard, was Toby's kiki.

Last night I had the usual interruptions to my sleep: a perpetually squished bladder and a restless baby inside me, Toby peeing through his pull-up all over his sheets, Emma wanting to sleep on my floor because she had a bad dream, and Naomi complaining of a mysterious ache in her arm, but at least we had the kiki. And, with kiki in custody, I have every intention of prioritizing rest again this week, for whatever it's worth.