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.

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.

The Infection (part 2)

...continued from Thursday, September 29th...


Around 2:00am the ER doctor returned and apologized for making us wait. He said that after speaking with the radiologist he learned that a CT scan would not be as sensitive to picking up a spinal abscess as an MRI, and we would have to wait until morning to have an MRI done. By 3:00am we were finally settled in the same room on the fourth floor that Naomi had stayed in over a week earlier. There was a measure of comfort to the familiar surroundings and the familiar nurses, and Naomi dropped right to sleep. As tired as I was, I lay awake fighting with an uncomfortable recliner and going over and over Naomi's situation in my mind.

There is enormous burden on the shoulders of parents who have children with complicated medical issues. I know that only I can keep in the forefront of my mind all the medical information pertinent to Naomi's case. I know that I know more than any doctor in this town about the specifics of Naomi's medical conditions. It is a rare combination of rare conditions and the doctors and nurses daily make mistakes that I feel the pressure to protect Naomi from. I stand guard at her beside, and before any medication is given to Naomi now I must ensure that is not an NSAID such as Ibuprofen or Motrin since those cannot be given to patients with polycystic kidney disease. Four times in two weeks I have caught nurses attempting to administer an NSAID to my child on doctor's orders. I must ensure that the medication contains no gluten, dairy, or red dyes. The gluten and red dyes have been nearly given to Naomi too many times to count now though every paper in her chart clearly marks them as allergies, and a bright orange allergy sign lists them above her head. The doctors are all too quick to make decisions regarding Naomi's care without thoroughly reading her medical history, so I feel the need to review and question each decision they make. I finally drifted to sleep around 5:00am.

Naomi was awake again by 7:00am. She had no appetite, but was thirsty and cried when I explained that she couldn't drink until after her MRI that morning. She requested more pain medicine and we waited. At 10:00am the technicians wheeled her down for her MRI. She was quiet and half-asleep as they hooked her to monitors. All was well until the Versed that was supposed to keep her asleep during the scan was injected into her IV. Suddenly Naomi was restless and irritated. When the nurse tried to cover her ears with sticky foam pads to protect her hearing she suddenly flew into a rage. She screamed and covered her ears. I immediately recognized it as a reaction that Naomi has when overtired and overstressed, especially if a certain drug such as red dye or steroids or, in this case, Versed makes her more irritable. I knew at that point that the only chance of her recovering would be for everyone to leave her alone for fifteen minutes until she settled, but the nurses were pressed for time to complete the MRI before the Versed wore off. I stood by, knowing it was futile, as the nurses attempted to soothe Naomi, then chide her, then pin her down and force her to comply. She only grew more violent, kicking and screaming and ripping her monitors off. And eventually, for everyone's safety, the MRI was cancelled and Naomi was sent back to her room.

For the first time in the past weeks of medical mayhem I felt tears in my eyes. I couldn't have been more tired or discouraged or worried about my daughter than at that point. We had stayed in the hospital just to get that MRI, and her care was to be based on its findings. Now what? Back in our room, Naomi's pain increased and her fever spiked again. The nurse paged the pediatrician, gave Naomi more morphine, and scrambled to find a form of Tylenol that didn't contain starch or dye. We finally had to hold Naomi down while we placed two Tylenol suppositories. Eventually Naomi quieted and settled to watching a movie. Around 2:00pm the pediatrician finally came to see Naomi. After seeing her miserable state with his own eyes and finding her quite tender in the back and abdomen, he decided to start her on IV antibiotics, even though the source of infection could not be identified. We also decided to run a CT scan on her back, even though it would yield less information than an MRI, since it would not require sedation or long periods of stillness.

Naomi was extremely thirsty by this point, but I explained that it was her own lack of cooperation with the MRI that caused us to have to run the CT scan and kept her from being able to drink water. She was remorseful then, and promised to try her best to cooperate with the CT scan. Just as I was hopeful that this scan would run smoothly Naomi started clawing at her head. "Mommy!" she whined, "My head itches really bad all over!" Within a minute or so her scalp, face, chest, and arms were covered in a raised red rash. I called the nurse who immediately stopped the antibiotics through the IV and ran to page the doctor and grab a dose of Benedryl. It was five minutes before the Benedryl was in the IV and would take another twenty minutes or so to stop the itch. To my dismay, the CT techs arrived and wheeled Naomi back downstairs while she was still miserable from itching. Vancomycin was added to Naomi's ever-growing drug allergy list.

Naomi cried on her way to CT. She was so tired, so thirsty, the nausea had returned, and now she was itching all over. She wanted to cooperate with the CT scan, but she was afraid she wouldn't be able to. I was afraid too and wanted to cry with her. With tears in her eyes and a vomit bag beside her, Naomi was transferred to the CT scan bed, and I was forced to leave the room since the radiation from a CT scan is unsafe for my pregnancy. Thankfully, Naomi completed the CT scan well and good pictures were obtained. By the time we were back in our room again her itching had stopped, her fever had dropped, and she was able to fall asleep.

Only at this point did I finally feel safe in leaving her side to get food for myself. In 24 hours the only nourishment I had taken in was water and two cans of Sprite that I had drunk while out of sight of Naomi. I informed the nurse I was leaving and asked her not to give any medications to Naomi while I was gone. I quickly scooped up a chicken sandwich and some fruit and cheese from the cafeteria and hurried back to the room. Naomi was still sound asleep so I sat beside her and quietly chewed and breathed a long sigh of relief.

Around 5:00pm the doctor called to say that the CT scan had not shown any signs of abscess, but it could have possibly missed a small one. The scan, however, did show a thickened bladder wall which could be consistent with irritation or inflammation from a urinary tract infection. Since Naomi's lower abdomen had also been tender the pediatrician proposed that we were probably dealing with a UTI, even though her urine had not shown clear signs of that. He switched the IV antibiotics to Rocephin and said he'd see us in the morning to examine Naomi and talk about the results of the urine culture.

Around 9:00pm Naomi finally turned a corner. Her fever had stayed down now for about five hours, her pain lessened, and she was allowed to drink water, but I wasn't comfortable leaving her in the nurses' care yet. Matt drove home from his job training to stay the night with her in the hospital so I could head home to get some real food and sleep.

Hannah, Emma, and Toby had had a happy day with their Grandpa Eby, and a happy evening with a friend from church watching them. It was nearly 10:00pm when I arrived home. Toby attacked me in a hug, then decided to whine for a cookie, and throw a fit when he was denied. Hannah simultaneously bumped her leg and began crying for a kiss. A quick bed-time followed for them and I collapsed in my bed shortly after that.

Matt didn't get much sleep at the hospital. Naomi's four-hour evening nap had refreshed her and her water bottle that she uses at night cracked and began leaking. Naomi decided to wake Matt hourly to ask for drinks of water. The nurse attempted to help by offering to let Naomi watch TV at 2:00am, a suggestion which Matt didn't find helpful in the least. He wearily headed back to training at 7:00am, and was surprised that he had caused quite a stir by disappearing from the hotel the night before. He wasn't in trouble, but he had a lot of people worried about his safety or the health of his hospitalized daughter.

Naomi was much brighter when I joined her Thursday morning. Her fever had not returned. I was finally able to coax her to sit up, and she was surprised to find that it didn't worsen her headache any. We eventually brushed out her tangled mass of hair and gave her a can of ginger ale to sip. The pediatrician came by our room around noon and we spoke about the possibility of discharging her that afternoon, but the urine culture had come back negative, making it unlikely that the infection had been a UTI. In addition, Naomi's back and abdomen were still quite sore, especially when he pressed beside her spine at the level of the spinal tap. We decided that it was possible the infection was a small abscess in her spine that was responding to antibiotic treatment, and that discharge that afternoon may be premature. He wanted to keep her on the IV antibiotics until Friday morning, and to see if anything eventually grew in the blood or urine cultures and if her back stopped hurting.

Naomi spent the day happily watching a pile of movies. She eventually regained a decent appetite and I was comfortable leaving her for a few hours to take care of some things at home. I left her in the care of the night nurse for the night as well, who called out as I left, "We're just going to be having pizza and partying tonight, don't worry!" I dreamed last night that the nurse had indeed served Naomi cheese pizza with full servings of dairy and gluten, and I was giving that nurse a piece of my mind when my alarm clock went off.

Instead, I found that Naomi had slept well and was just waking up as I entered the room this morning. The doctor came by around 9:00am and said that we would be discharged this morning even though Naomi's back is still sore, pending results of the blood culture. We've now been waiting two hours for the lab to get a 48 hour report on the blood culture to the doctor so that we can go home.

It is good to have a healthy, happy daughter again and to know we may all be home as a family tonight, but I'm not letting my guard down too quickly. There is always the possibility that the infection was not completely wiped out by 48 hours of  IV antibiotics and that it may return, whatever it was. Tonight I will celebrate and rest, but it will be hard to truly relax until Naomi is really pain free and at least a week has passed without signs of infection. I just hope we're all truly healthy and settled before this new baby comes--less than 10 weeks to go until that saga begins.

The Infection (part 1)

This week was Matt's second week of training for a new job near our house. Unfortunately, the first three weeks of training are at a city an hour and a half away from our house. By Tuesday morning, one week after Naomi was discharged from the children's hospital, I was finally feeling rested and caught up enough on chores to take the kids to visit Matt. Naomi had continued to have a mild headache and backache and I had continued to give her prescription pain medication as needed, but I was confident she was nearly recovered.

Excitement built as I packed the kids' dinner and swimsuits for a fun family night at Matt's hotel. At 4:00pm I loaded all our bags in the car and strapped Toby securely in his car seat. I called back to the girls in the house to hurry out to the car. Naomi appeared in the doorway holding her head and mumbling to me. Leaving Toby, I walked to the door and asked her to repeat herself. "Mommy, my head aches really bad again," she complained. I paused a moment, then decided to give her another dose of pain medication and load her in the van. We'd been dealing with headaches for two weeks now and neither she nor I wanted it to spoil our evening.

Naomi's headache responded so well to the medication that neither she nor I remembered to tell Matt about it when we got to the hotel. The hugs and excitement swept us into the hotel room and carried us through the evening. Thinking back now, I realize that Naomi ate little dinner, and wasn't very active in the swimming pool, but her quiet smile hid her discomfort well. After changing everyone into pajamas I suggested that Matt take the kids to the lounge and pop some popcorn while I collected the wet towels and swimsuits.

"Mommy!" Naomi suddenly burst out, "My tummy hurts really bad now! I feel like I'm going to throw up, and my headache is back too!" She tried to follow Matt to the lounge, but quickly retreated to the bed and lay shivering under a pile of covers. "I feel really sick, Mommy. I'm so cold!" she whimpered. Matt and I felt helpless. I had no medication with me to give her and I was confident she'd vomit it back up anyway. She was clearly too sick to ride an hour and a half sitting up in a car seat on the way home. I briefly considered taking her to the local ER, but quickly realized that it would be impossible for Matt to watch the other three kids in his hotel room all night. Naomi did not want to move from the hotel bed, but staying there didn't help her at all. It was a difficult decision to make, but Matt finally carried Naomi to the van and we strapped her into the front passenger seat with the seat fully reclined. We tucked two blankets in around her and buckled her in as well as we could, then put the other three kids in their seats.

I called my parents for advice, then called Matt's Mom to ask if she could meet me at home. Thankfully, Naomi slept most of the way. I kept remembering as I drove how the doctors had said the previous week that they would be much more concerned about Naomi's back pain if she were running a fever. Matt's Mom was waiting when I pulled in our drive. I let her and the other kids into the house and ran back to the van with a thermometer. Naomi shivered while I took her temperature. It was 103 degrees. I quickly packed a few things, said good-bye to the others and drove Naomi to our local ER.

It was a long five hours in the ER from 10:00pm to 3:00am. Normally docile and compliant, Naomi was in no mood to be messed with that night. It took four nurses to hold her down while they drew blood and placed an IV. "It would have been better to stay at home!!" she screamed with all her might, and I knew that it was hopeless to try to convince her otherwise. She was beyond rationality. I just stroked her hair and sang quietly until the nurses left and she calmed down. I was depleted as well after hours of preparation, driving, swimming, and driving again. I ached to sleep, but that wasn't an option.

At 1:00am the ER doctor reported that the initial lab work didn't indicate infection. "It's most likely viral, so I'm comfortable sending her home. Do you have any questions?" he rattled off mindlessly. I knew viral illness was a possibility, but what in the world was I going to do with Naomi at home? Even on IV anti-nausea meds and morphine she was wide awake and miserable.

"Well," I stalled, trying to think clearly, "Naomi's had ongoing headache and back pain for two weeks now--long after she should have healed from the spinal tap. When we were at the children's hospital they told me that they'd be much more worried about her back pain if she had a fever. So, now that she has a fever I'm pretty concerned. I want to be sure she doesn't have an abscess or something in her spine."

The doctor's demeanor immediately changed. "Oh, I wasn't aware of that history," he quickly back-tracked, even though this history had been clearly given to at least two nurses. "Yes, I think we should order a CT scan then, I'll be right back."


...and now, I have to go to bed for the night...I'll continue this saga with part 2 tomorrow...

Joining the Song

Some thoughts from our stay at the Children's Hospital last week:

Beside me sits a little boy, maybe six or seven years old, in a wheelchair. His dusty blond hair is shaved close and his head is wrapped in layers of gauze. His left arm is casted and rests in a sling. His legs, covered in bruises, cannot hide under his short hospital gown. His right arm is wrapped in a foam pad that protects his IV site, but he has no trouble using this arm to shake his maraca to the guitar's beat. Incredibly, his face is smiling brightly. The boy's father sits beside him, smiling at his son, but the father's smile is guarded and weary. I wonder how long it's been since the accident and how long it has been since the father has slept.

Beside them sits another family: a young mother and father with their four-year-old daughter, "Kelsey." I know this family. We met on the elevator yesterday. I had joked about the pile of movies on Kelsey's lap as she rode in her wheelchair. "We've watched about every movie in the library," her mom sighed, "we've been here for over three months." She freely told their story. Kelsey had been born with a hidden birth defect: a weak stomach that caused no problems until it suddenly burst one summer day and sent Kelsey into septic shock. She had nearly died and only recently was well enough to be up and about in her wheelchair. "We're hoping to go home in another four or five months," the mother cheerily summed up. Today Kelsey also smiles and beats the lollipop drum on her lap. I wonder if she even remembers her home or how it felt to swing on a swing or slide down a slide.

Next in our circle are two girls, each with a parent and an IV pole beside them, but like my daughter, it is not readily apparent why they are here. "Jesse" is reclined in his special-needs wheelchair on the other side of me. He has only a nurse to help him beat a drum, but with his eyes to the ceiling and his tongue protruding he beats his drum and laughs. I am surprised when he laughs. I had assumed from his blank expression that his emotions were blank as well, but as he beats harder and laughs harder I realize how wrong I had been. I wish his parents were there to see him laugh.

The lady with the guitar sings softly and we play our instruments softly. She sings loudly and the whole ninth floor of that children's hospital is brought to life with maracas and drums and laughing sick children. I didn't choose to be in that room today. I want to be home with my other children. I want my daughter to be able to walk without pain today. A nurse sees my sad eyes as I look around that circle and leans close to me to say, "That's the thing about working here I guess. I realize that no matter how bad things are they could always be worse." She is right, but I am gripped by more: if Jesse and Kelsey and the boy from the accident can beat a drum and shake a maraca and smile, I have no reason not to join in the song.

Upheld: Pictures of Naomi's Hospital Journey

Naomi has been hospitalized for four days now. She's had some very painful and trying times, but some bright spots as well. Here are the pictures I've snapped of our journey.

Naomi working on Lite Bright Saturday afternoon

Being transferred to the ambulance Sunday morning

Off to the Children's Hospital, where we sat in the ER for 8 hours before being admitted!

In our room this morning (with a pillow pet they gave Naomi) she was finally able to sit up!

Sitting up again and a few more pictures of our 5 star room in a brand new facility.

Naomi's TV and our in-room refrigerator

This is my corner with my own bed, desk, and my own TV

Naomi even felt well enough to visit the playroom and do some artwork

Since Naomi was sitting up on her own without a headache, the blood patch was cancelled this morning. Now Naomi is simply being observed until tomorrow morning to make sure she can tolerate being up and about normally without the spinal headache recurring. Her back is still sore, but not quite as frozen as it was last week. Hopefully her back will loosen up, her headache will not return, and we'll be on our way home tomorrow. Thank you all for continually upholding us in prayer.

The Brighter Side of the Hospital

A daughter in the hospital for days on end? That's the last thing I need right now...or maybe it's not so bad.

Yesterday evening I drove home for a few hours so I could eat and catch up on chores while Matt got a chance to visit Naomi. I was glad to be home...for about five minutes while I ate and hugged Toby. Then it began. I put away the dinner leftovers that a friend had graciously brought us, loaded and ran the dishwasher, started the girls cleaning up their mess, and went down to the basement to throw in a load of laundry. Just a few minutes later Hannah came running down the stairs yelling, "Toby's in so, so, sooooo much trouble! He broke the mirror in your room and he's playing with the glass!" That got my heart pumping.

Toby was now downstairs quietly looking at his hands, which were both covered in blood. He looked at me and back at his hands, but he didn't dare complain. I ran him to the sink and washed his hands and was relieved to see only two small cuts on his fingers. After being bandaged up I left him strapped into his booster seat in the kitchen, screaming, and I felt zero sympathy for his plight.

The mirror had been given to us by Matt's parents last week as part of a dresser and desk set that Matt had owned when he was young. I thought the mirror would be safer and more useful on the wall in our bedroom than on the back of the dresser in the kids' room. I had moved it to our bedroom and left it against the wall, but hadn't found a chance to hang it up yet (somehow, it's been a busy week). Toby had found the mirror in my bedroom, tipped it down on the floor and, judging from the bent-out back, had probably stepped or jumped on it until it shattered. I removed all the little pieces of glass to the dumpster and vacuumed the room thoroughly, all while Toby screamed and screamed.

"Mommy! Can I get out my boo-seat!" he wailed. "I be a good boy!" But, after lecturing and releasing the prisoner he did not live up to his promise of good behavior. I returned to the basement to finish the laundry and he immediately pulled a chair over to the basement door, closed it, and slid the barrel bolt in place, locking me in the basement! He was not malicious in his intent, he is just Curious George incarnate. He soon realized that he had locked himself away from his own mother and began screaming again and banging on the door, "Mommy! Mommy! I lock the door! Mommy!" I just shook my head and went right on with the laundry. At least I knew where he was, and he did figure out how to open the door again by the time I was ready to come back upstairs.

I tucked the kids in bed, finished the laundry, packed my bags, and couldn't wait to get back to the peace and stillness of the hospital. Amazingly, I slept fairly well in the recliner in Naomi's room, other than the three times she woke screaming in pain because they kept wanting to sit the head of the bed up. I was armed now with clean clothes and snacks to last me a few days. When Naomi slept most of the morning I ordered her a breakfast tray, but then couldn't let it go to waste, of course, and had to eat it myself. Shhhh! In Naomi's words, "They sure do cook good around here."

When I called my mom to see how things were going at the house this morning, she attempted to update me, but had a hard time finishing a sentence without having to yell something at Toby. "Boy, he doesn't miss a beat in the morning, does he?" she observed. But my morning was quiet. It is now my full-time job to keep my daughter comfortable, watch movies with her, read books to her, and keep our family and friends updated on her condition. Of course, I want more than anything for her to feel better quickly and for us to all be home together again...but a little peace and quiet in the hospital has its upside too.