Posts filed under ‘Sickness’
This picture is of our little patient yesterday. Not a happy camper.
Sergei spent the night at the hospital with Polly. He came with the girls after their Father/Daughter dance at school around 9pm. This morning we are waiting for her doctor to come to let us know if she can go home. She’s much better today, eating and drinking a little and doing well off the oxygen. Sergei ordered her pancakes and yogurt for breakfast and she ate a few bits with just a tad bit of force from Papa.
She’s giving hugs now though, which definitely means she is on the mend! Hopefully she’ll be well enough to come home later this morning. Ill snap another picture of her in a little while so you can see for yourselves her improvement.
I am sitting next to one fitful little girl restlessly sleeping.
Thank God, her surgery went well without complications. The doctor removed her tonsils and adenoids (they had grown back from two years ago). Her ears were clear so no tubes today!
I can’t explain what it’s like to hand your child over to strangers and then walk downstairs to the basement to get an Egg McMuffin.
But it all went quickly and before I knew it Polly was back in my arms and we were nestled into a private room.
At least we got something out of her fussing so much.
I’ve spent over six hours in her hospital bed, the only way she wouldn’t cry and keep the oxygen tube near her face.
Now her sleep is even, the oxygen tube is pushed to the side (per the nurse’s instructions) and I marvel at the fact that here we are again; Polly and I in the hospital, except this time it will be two days instead of twenty and it’s America instead of Ukraine (and I LOVE her nurse today; I feel like giving her a hug every time she enters our room). I am neither in emotional nor physical pain and whereas I couldn’t imagine life with my new little baby almost three years ago when I sat with her day after day in the hospital, now when I look at her my eyes tear up.
I can’t imagine what life would be like without her.
Sergei and I have resigned ourselves that Valentines day, at least for a few more years, is a family affair.
Oh, sure, we try to plan a date or to do something for just the two of us at home but many years our plans have been foiled by circumstances outside our control.
Valentines Day, 2009: the day went alright. A typical Saturday really. I took the girls to the library and then dropped them off at a birthday party (thank God for birthday parties). When I got home Sergei left to go spend his birthday gift card at Barnes & Nobles. Polly and I hung out, watched a little Signing Times and had a snack. A little while later I noticed Miss Polly nodding of while pretending to read a riveting story about Caillou.
I took advantage of her sleepiness. Naps have been a thing of the past as of late. I scooped her up and tucked her into her crib and sat down on the couch to read a not so interesting book.
Enter Sergei and Lainie and Zo an hour later, and Polly was still sleeping. Hour two, Sergei checked and she was sleeping heavily all wrapped up in her baby blanket quilted for her by her Grandma Annie.
Hour three was my turn to check, the sun was setting for the day and our little one was still completely out.
Hour four, Sergei decided nap time was over. He came into the living room a few minutes later with a very sleep, very hot little girl.
The two older girls have messed around with coughs and slight fevers all week.
Sergei cooked our meal for two; steaks, asparagus, mashed potatoes with cheese and sour cream. A nice glass of red wine sat at our place settings. The table was set by our generous oldest daughter. She even used napkin holders and linen, happy that her Valentines meal included french fries and a burger from a drive thru joint.
But our dinner for two was not to be.
Out came my old faithful standby, baby Tylenol. Polly refusing to be put down, nestled right into the crook of my arm and played her role of sick child very well. I was a bit alarmed.
We flip flopped, Sergei took a turn on the couch in between Lainie and Zo, holding our little bundle of heat. I wolfed down my food and took a sip of wine, and received the hand-off of one sick child who’s fever wasn’t so high, thank God, in time to catch the tail end of ‘Be My Valentine Charlie Brown.’
At 8pm the two older girls were prayed for, kissed, tucked into bed. They were allowed to sleep together and stay up a bit to tell stories. Sergei, Polly and I settled in to view his movie choice, ‘Coffee and Cigarettes,’ an hour and a half of short vignettes based on people smoking cigarettes and drinking coffee in cafes.
Half-way through the movie, Polly perked up and clearly appalled by the number of smokers in the movie (health, people!) she opted to walk around our downstairs floor in circles. Sergei kept pinching himself to stay awake (who picked the movie?) and I waited through each scene, certain the next one would be better than the last.
It was a good Valentines day, though. Any time a young child turns a corner when she seems to be really sick is good.
Besides, I don’t think Polly will experiment with cigarettes later in life.
We met the head pediatrician and her colleagues the morning I woke up in the gray, bare recovery room, the morning of the emergency c-section. It surprised me when I saw a whole team of doctors pile into our room. I wondered if that’s just how it was done in Ukrainian upscale hospitals but soon learned that they were there because my child was sick. Because this was serious.
The main doctor became “the rock star” to us because her shoulder length hair was a brassy blonde, almost gold with three other colors thrown in for good measure. She wore thick make-up; deep blue eye shadow, bright pink blush and rich, ruby red lips. She looked official though, clipboard in hand, stethoscope draped around her neck, a crisp white medical coat with clothes underneath that were bright and stylish. The doctor next to her, who ended up being the kinder of the two, had dark brown hair and wore no make-up, a large mole sat above her lip on the right side of her face. She wore sensible black shoes.
My daughter had low blood platelets. She seemed to have some kind of infection in her blood but they could not figure out why nor how to fix it. Her body temperature and breathing were being helped in the incubator. She was a bit jaundice too.
That bleak morning, in hushed tones the rock star said it was too soon to know if the baby could fight off the infection. They were doing everything they could for her.
Elaina had jaundice the first few days of her life what seemed like a million years ago in our little apartment with the porch in Chicago. I sat outside with her while the sun seeped vitamin D into her skin making everything OK.
Shaking my head, I realized the rock star was still talking. Russian words fell off her tongue, cutting through the silence and apprehension thick in the room. I heard the words “syndrome downa” and knew she was repeating what I was told earlier; that my third child may have Down syndrome. I looked over to the side table next to my bed. There sat a tan telephone, a plastic cup filled with ice water and a straw and three pages of information about Down syndrome. She said that they had already taken a vile of the baby’s blood and sent it off to a geneticist for testing. We should know in two weeks.
The rock star said she would try to get the test results as soon as possible and then depending on what they are, my husband and I would be given options of what we would like to do.
“We know what we are going to do with her, we’re going to love her,” I thought to myself.
I said nothing.
The nursery quarters consisted of three rooms. Each room was completely visible to the other. The bottom part of the walls were like a cold dark January day, the top halves were windows. The rooms were strictly functional. Nothing in them celebrated the new lives they held.
On the right was a room lined with four or five bassinets against one wall. A diaper changing station occupied one corner. A rocking chair where nurses sat to feed or soothe a newborn was in the other corner. Each clear, plastic bassinet had a blue or pink card on the front with the name, weight and height of the child inside.
The room on the far left held four elaborate warming beds, donned with bright yellow lights. Two or three babies lay under screamingly bright lamps. The penetrating light nursed them to healthy bilirubin levels, changing their carrot-like skin back to newborn pink. The babies were spread eagle with little black tanning masks over their eyes. They looked as if they were enjoying an Aruba vacation. I half expected an exotic drink with an umbrella resting in a little hand. I wanted to climb up with one of them, scoot him over and enjoy the warmth on my skin too. I was jealous of these babies and their mothers. If only a bright light could bring my daughter back to full health.
The middle room was for babies who were sick. It was plain except for medical equipment.
And there our child was, alone.
The machines hooked up to her showed she was alive. Her domed bed was adorned with wires and switches. Oxygen and warmth pumped into her little plastic house. She too had a pink card taped on the right side of her plastic house.
But the card did not have a name written on it. The birth surprised us three weeks early. We had yet to decide on a name. After her birth my mental list of names did not fit her. Though in many ways she resembled her sisters, honestly, I could not consider choosing a name. I still felt like I was visiting someone else’s sick child.
Life was happening around her but not in her. While visiting I concentrated on her body to ensure that her chest moved up and down. Her actions, if any, were slight. She hardly ever opened her eyes. Her lips were crusty and peeling. Just under five pounds you could see her bones sticking out of her limp flakey flesh. Her body was long. She had big feet and a full head of golden brown hair. I remember thinking that she looked like a grumpy old man at the end of his life, too weak to bother with the rest of us. I was allowed to open the plastic window and lay my hand on her body or hold her hand for a couple of minutes here and there. Her oxygen went low when the window was open. I liked to hold onto her heel.
I stood by her incubator in small increments of time for the first three days. My incision ached and I became light headed often. Every two hours a nurse would take a tiny tube connected to a bottle of formula that held a few ounces. The nurse would place her hand on the back of the baby’s neck, lift her head a bit and when her lips parted the tube was placed inside her mouth and then pushed down her esophagus and into her stomach. Instantly the liquid would disappear. Every time it was very quick. I asked the nurses to let me know when they were feeding. Usually I did not find out in time.
I met my little girl the evening of her early morning birth. I was on the floor above her in a recovery room and numb from the waist down. The smiling doctor did not want me to get out of bed but I was determined. If I could actually see her, maybe touch her, mothering impulses would kick in. I would recognize her as mine and, like a Hallmark commercial, the music would queue and everything would be alright. The whole situation was like a dream. I had lain in bed all day trying to believe that I really now was a mother of three. One of my children had been a part of this world for almost a day and I had yet to meet her. I thought that seeing her would make it a reality.
I knew she was sick and the doctors suspected Down syndrome. Earlier in the day Sergei took a digital picture of her and brought it to my bedside. I sobbed. Just under five pounds at birth, she was a raisin, all shriveled and tan. She did not look like I a baby with Down syndrome. Presuppositions that existed, unknowingly tucked away in a manila folder in my mind, were popping up. I expected her to look like she had Down syndrome. But she was long and thin like her oldest sister and she had a full head of hair like both of her sisters.
I was wheeled out of the recovery room, frightened, depleted. I needed to see her, to know she existed apart from me, to really believe that I had given birth. Moving slowly down the hall, into the elevator and out onto another floor, I was sure that every person who saw me felt sorry for me. “There is the lady with the sick baby.”
Doors are often used as symbols; opportunity, closure, safety, entitlement. The groom carries his bride over the threshold of their new home together, an angry teenage daughter slams the door in her mother’s face, a thief kicks the door down. In the cartoon “Monsters Inc.”, the scream factory houses millions of doors to children’s rooms. The monsters go in and out, swinging from one life to the next on the roller coaster conveyor line of doors.
Even Jesus used the metaphor “Ask and it shall be added unto you, seek and ye shall find. Knock and the door shall be opened unto you.”
Reaching out and turning the knob, opening the door and going into my daughter’s sick room was the most difficult threshold I have yet to cross.
In the corner of the nursery room was a lonely incubator that held my newborn. My cheeks were wet as Sergei wheeled me up to her side. She was so small. I wanted to hold her but settled with reaching through the plastic window and laying my hand on her chest. Her breathing was fitful, quick. It sounded like she was having an asthma attack.
“Hi, little one, I am your mommy.”
I needed to hear those words. She was still, her eyes pursed tightly together, her little chest contracting with every breath. I sat beside my daughter, quietly, for a while and prayed. “Beep, beep, beep,” the black screen with the squiggly green line was still with us, ensuring that our daughter was alright.
I was wheeled out of the sick room, to the elevator, up a floor and back into my room. I remember rooming in with my other two babies, sleeping lightly, getting out of bed to change a diaper, staring at my newborn’s face for hours.
The remainder of my time in the recovery room with the preoccupied nurse was uneventful. I slept, I ate a little. My body started to wake up. My middle ached and my toes itched. After Sergei left for the night, I cried.
The nurse asked me if I’d like to stand up. I pretended I didn’t understand what she was asking. There I lay into the night, exhausted and sore but unable to sleep. The sun set and the night nurse came into my room and asked if I minded if she took the small television in the corner. I fell asleep listening to the laughter of the nurses watching a Ukrainian soap opera in the hallway.
After a quick kiss from Sergei, I was whisked through double doors. The temperature dropped twenty degrees in seconds. My teeth began to chatter. I felt very small and alone. Nurses and doctors buzzed around the room while Russian words swirled above my head.
I remember being asked if I would like an interpreter for the birth when we signed our agreement to deliver in this hospital. Thinking Sergei would be there to help, I said no.
A thin blue paper robe stripped me of armor and eloquence. I was rubbed raw, unable to play the part of a person confident in her maker. My mind was cloudy without a clue of what came next, unable to understand basic Russian words memorized in the first six months of language classes. I could hardly think of how to extend pleasantries to the staff because of nerves. Prerecorded prayers I had memorized to date were no where to be found in the usual places in my mind.
“Help me Lord. Help us.”
The smiling doctor was in the operating room with several nurses and the pediatric team and an anesthesiologist. She greeted me and started to explain about the epidural going into my spine. Her breath reeked of cigarette smoke and her voice was scratchy.
The room was the kind of cold you feel in an old woman’s hand or when you sit outside on a cement bench on a winter’s day.
I felt a stinging prick in my lower back, smack dab in the middle. Immediately warmth spread passed my belly and out to my toes.
A nurse laid me back on the gurney and placed a mask over my face. I thought I would be awake for the birth like those television shows you see; the little curtain at the woman’s mid-section, the husband seated on a high stool up by the wife’s head. The baby’s cries fill the room as the doctor lifts up the child to proclaim “it’s a girl!”
The nurse told me to count backwards from ten and I was confused. I didn’t know if I should count in English or in Russian. The hum of the fluorescent lights screamed in my ears. “Deysyet, deyvyet, vohsehm”, my voice shook, “sehm…”
I floated upwards away from the smiling doctor, a scowl now on his face as he bent over me, away from the anesthesiologist waiting for her next smoke break, away from my friends keeping my husband company in the lobby by swapping birth stories, away from the little one struggling in my womb. I floated upwards towards a bright yellow light. Relief flooded my body. I was asleep.
The first two years we lived in Ukraine I studied cultural norms and learned how to buy ingredients for borscht and leaned heavily on my American teammates. They were a life boat in rough waters.
Having been through culture shock and language classes, many could roll with superstitions still prominent in the culture; spitting over your shoulder three times to keep the “evil eye” away from babies or not whistling indoors to ensure prosperity and wealth. They had a basket of topochkee near the front door of their apartments for visitors to wear inside instead of shoes. The call to live and serve in Ukraine was strong and true. It helped on days when someone was ready to pack up and go home.
I loved getting to know Ukrainians but I appreciated American banter at team meetings and praying with others in a language that was comfortable when everything else in my life was uncomfortable. It took so much energy to even attempt to acclimate to the culture. With teammates and other ex-pats, I breathed, I rested.
After settling into my room at the hospital the day I was admitted, my friend J called my cell phone.
“I hope you don’t mind, Gillian, but I called L to tell her about you and the baby.”
L was another teammate who before moving to Russia and later to Ukraine for a counseling ministry was a post natal nurse in the States.
J was only looking out for us. She really was a great mother hen for the whole team. But I was on edge and a bit flustered and scared. Her phone call provided me with something to replace my worry. At least for a couple of minutes.
“That’s fine, J. I am glad she knows so that she can pray,” I lied through clenched teeth.
My friend sensed my frustration and continued on anyway,
“We are coming up to the hospital. My husband and I are leaving the kids with a sitter and we’ll pick up L on the way.”
I was not given a choice. Thank God.
A few minutes later the telephone rang again. This time it was L.
L is a wonderfully sensitive, soft spoken woman. I imagine she is a fantastic counselor because when you talk with her she gives you her full attention.
I explained that the baby had not grown at all since the last visit, how I was admitted and on an IV with glucose and other vitamins. I told her about the green squiggly lines on the monitor screen, how the baby’s heart beat dropped low, very low when I’d have a contraction.
There was silence on the other end of the phone. And then,
“Gillian, I will be there in a half hour. The next time your doctor comes into the room you need to demand an emergency c-section. I don’t want to scare you but in the States your baby would have already been delivered. She is not doing well. Listen to me, you have to talk to your doctor.”
I held the phone up to my ear taking in L’s words. Was this some kind of bad dream?
We hung up and I told Sergei what L said. He went to find the doctor.
I closed my eyes and exhaled.
“Please God. Keep this baby alive. And help us to know what to do.”
I was sure I was watching a scene unfold in someone else’s life.
A metal table housed a tiny television in the corner of the recover room. The walls were bare and a very pale shade of blue, almost gray. A nurse was quietly putting away supplies on the other side of the room. She was blurry. I blinked a few times before realizing a clouded partition stood between us.
She noticed my arousal and came close to me. “Kak vwee cebya choostvooyeteh?” she asked. She was a petite woman, young, her plain brown hair was tightly pulled back in a pony tail. Her demeanor was not friendly but more business-like. I thought about the nurses I had the two other times I gave birth. They were much more friendly and talkative, they smiled a lot and lingered.
I said I was fine and asked about my daughter. The nurse told me my husband had gone home for a few hours of sleep but will be back soon. The baby was in the nursery on a different floor. “You’re husband will explain everything to you when he gets here. For now, you should sleep,” she said, already walking away from me mid-sentence.
But I couldn’t sleep. I was left alone in my own body for the first time in nine months.
For the next two hours I waited for my husband. Periodically I tried to wiggle my toes. I looked down at my stomach a lot shocked that the baby was no longer there. I dozed a bit and prayed popcorn prayers in and out of sleep, “let the baby be OK, let the baby be OK.”
My husband showed up around eight o’clock. His chin was stubbly and he wore the same clothes from yesterday.
I remember the first time I felt an attraction to him. He was interpreting for one of my teammates leading a Bible study on the book of John. Somehow by my junior year in college God had gotten my attention enough to tell me to go to Ukraine as a missionary for a year. My apartment building was next door to where he lived at the time. Our group was the second set of Americans he had worked with. He interpreted, helped people buy groceries, paid their bills, walked them through the metro system. Sometimes he’d stop by my apartment and ask to borrow some music from America. He was kind and serious, quiet yet outspoken when it counted. He was the only Ukrainian working with our American organization who really did not care for America. We became friends. And that morning at the Bible study on the book of John I was convinced his clear blue eyes were focused on me.
In the hospital room he bent down and kissed me like he kisses his mother. Absolutely no pucker or pressure, just a slight brush of the lips. “How are you feeling?”
Again, I asked about the baby.
“She’s on another floor in this hospital in an incubator,” he said. “She was in a bad shape when they took her from you”. Though raised speaking Russian, my husband speaks excellent English. He only makes mistakes in English when he is tired or nervous.
It was like my husband was telling me a story about someone else. I didn’t remember anything about my daughter’s birth.
He continued, “She wasn’t breathing and was very little and all shriveled up. They resuscitated her. She has some kind of blood infection too.”
I looked out the window. It was raining outside. I thought about people getting out of the shower, having coffee, leaving their apartments to go to work. “The doctors said she wouldn’t have made it till morning. She’s cute, but I have to tell you something….they suspect she has Down syndrome and at this point the doctors aren’t even sure if she will make it. The head of pediatrics is coming to talk to us this morning at nine o’clock.”
Sergei’s hand trembled as he handed my a few pages. “When I got home this morning I went on-line and tried to find something about Down syndrome. I didn’t have much time, but I did find a few things.” One page read “Myths and Truths about Down syndrome.” The other page was an article written by a woman whose granddaughter had Down syndrome. With the arrival of our daughter, my parents now had eight grandchildren. I thought about them half way around the world, seven hours behind us in time. Both sleeping soundly in bed. My father’s snoring filling the house.
The fact that my husband looked on-line for information about Down syndrome made my stomach flop.
“Does she look like she has Down syndrome?” I asked.
“She has a full head of hair, just like our other babies.”
I found myself trying to move my heavy, lifeless body over to the left side. Suddenly, all I wanted to do was sleep. I called out to the nurse and asked for another pillow. It was painful to move. My legs were numb and heavy. I managed to get over to my left side with the pillow between my legs. There, I had finally gotten in the correct position to sleep for a pregnant lady. Only then I remembered again that I wasn’t pregnant anymore. My baby was somewhere in the hospital, alone and sick. And she may have Down syndrome.
After a little while my husband left me to go check on our daughter. And I burst into tears. I cried loudly for a few minutes and then tried to gather myself. The nurse watched me through the cloudy partition.
Our scheduled, crazy busy week has turned into a week of cancelled therapy sessions and outings, doctor visits, boredom, itchiness and lots of television.
Elaina started it all with puffy, oozy eyes on Monday. By bed time she was coughing and sneezing and a little warm. Polly woke up this morning unable to open her eyes, the poor dear.
And although I am crabby, I have a great sense of relief in cancelling our life for a few days.
We are taking a time out.
Time goes so slow when you have a bad case of PMS and are home with three little girls, two of whom are sick.
The girls are troopers though. They are in good spirits except when I come at them with warm wash clothes to wipe their eyes. They like to hang out in an imaginary world created under the dinning room table. They pretend to be spies in gymnastic suits and look behind the couch for clues to their mystery. All three climb the stairs throughout the day hoping to find inspiration to start a new game.
Yesterday Elaina and Zoya taught Polly how to tell secrets. As I snapped this picture my eyes glossed over. Seeing all three girls happily playing, life so incredibly mundane and normal, things I thought were impossible after we learned of Polly’s diagnosis. I was so wrong.
A sick day once in a while can do wonders for the soul.
Oh no, my eyes are starting to itch.