Posts filed under ‘Gillian Marchenko’
and I saw the inside of my daughter’s brain on a computer monitor.
Yesterday, Polly, Sergei and I trekked off to Children’s Memorial Outpatient Clinic on Clark Street to meet with Dr. Alden, Polly’s Neurosurgeon. His full name is Tord Alden, which sounds really smart to me. A good sign.
I was surprised that Polly’s blood vessels are quite thin on both sides of her brain. Her Moyamoya is more advanced than I thought it would be. The angiogram took pictures of how the blood actually flows for Polly in her head and unfortunately, it’s not flowing much. Dr. Alden also pointed out three or four spots on each side of her brain that had gray clouds. These areas are from past strokes. Unbelievable! Our baby has had multiple strokes and we didn’t even know.
It breaks my heart. As a mom I expect to know when something is wrong with my kid. I count on that internal mother intuition that usually clues me in on ear infections or when someone is about to puke.
But I didn’t catch the strokes…
Dr. Alden talked us through the surgery, an indirect by-pass. I’m not going to act like I completely understand his explanation but I think he told us that they will cut out a piece of her skull, find a large artery and actually place it on her brain in order to create new blood flow. Again, referring to Dr. Scott’s (out of Boston Children’s Hospital) explanation:
We separate this artery from the tissues around it, keeping blood flowing through it. We open up a window of bone beneath the artery, and then use a microscope to carefully open all of the coverings of the brain right down to the brain surface. The artery is then placed directly onto the brain, and the tissues around its walls are sewn with tiny sutures to the brain surface to keep it in contact with the brain. Then the bone window is replaced securely, and the skin incision closed. In some patients, we may also place an extra small hole (a “burr hole”) in the skull away from the first incision, and at this hole we also make tiny openings in all of the coverings of the brain before closing the incision.
Dr. Alden at Children’s prefers to do each side of the brain separately, a month apart. He also said it is imperative for us to wait four to six weeks after Polly’s stroke for the first surgery. Her brain needs to do what it will to heal itself to diminish chances of bleeding and infection during the procedure.
The first surgery is scheduled for Friday, December 11th. There will be about an hour and a half of cutting, add in anesthesia and waking up etc… we’re looking at 3 hours for the whole process. Polly will definitely spend the first night in ICU and afterwards she’ll either be sent to another floor to recover or if she is doing really well, she may be able to go home the next day (WOW!).
So here is where I’m at personally with all of this:
Firstly, I thank God that even though Polly has had strokes in the past, he has kept her functioning well, without any residual damage from her little body’s upheaval to date. Her most recent stroke (the one I saw) left the most damage to her right side (likewise, it occurred on the left side of her brain) and she is recovering beautifully. If anything, the stroke has knocked a bit more of a sense of humor and sassiness in our girl. And we’ll take it! Someone reminded me today that God loves Polly even more than we do.
Secondly, of course, I’m scared. My time is spent breathing in and out prayers for Polly by day and on my knees next to her bed at night. Every time I hear a thud or a cry my heart sinks. I guess it’s human nature (at least for a mother of a child with special needs) to expect the other shoe to drop, for her to have another stroke pushing this whole process back or even worse, really messing her up. It’s exhausting, honestly. I’m forgetting to RSVP for birthday parties for Lainie and Zo and there is a constant nagging thought in the back of my head that I’m forgetting something. This morning I swiffered the dinning room floor with a baby wet-wipe and was thrilled that enough energy was mustered to clean at all. I’m not doing anything well and yet, by the grace of God, time is going by, like it always does.
Thirdly I’m spurred on to live day by day, ticking dates off on the calendar in my mind; another day Polly gets through without incident; a gift. This strength is gathered from my relationship with Christ, the Bible, my rather funny and very attentive husband, eskimo kisses from Lainie, Zo and Polly, warm smiles and chuckles from Evie.
Strength and encouragment comes from the most unexpected places as well. A mom from Zoya’s class emailed this morning. She excused my lack of RSVP-ness and went a step further inviting Elaina to her daughter’s party Saturday which will certainly break up our weekend. Sergei will be gone for his back-to-back six hour class Friday and Saturday on Patristics.
This kind of stuff keeps happening…a meal or a bouquet of flowers on my doorstep, friends on our street inviting my older kids over for playdates. Therapists making up missed appointments and ladies from church come over and watch our kids so Serg and I can go to Polly’s appointments together pro buno, even though they could use the money (couldn’t we all?) Emails and facebook comments, people (both friends and strangers) join their names to so very many in prayer for Polly during this challenge.
And this morning as I picked up Polly from preschool a little girl walked up and handed us a birthday invitation. The little girl’s mother and I locked eyes and before I realized I was talking I thanked her and said,
“When she was born I wondered if she’d get invited to birthday parties…this is her first one, and you guys are going in her baby book.”
The mother started to cry, Polly’s loving teacher Ms. Baba (Barbara) had tears in her eyes and ten little preschoolers continued to run circles around us completely unaware that God’s grace was happening right there, right then. He was showing me once again, His love and care.
We’re here and today, thanks be to God, we are alright.
J and her husband and L arrived within the hour.
They were upbeat, commenting on the private hospital’s nice rooms, shyly cracking jokes, squinting at me through the room’s bright lights. All three tried to act like it was the most natural thing in the world to be hanging out in a Ukrainian hospital room at one in the morning.
I loved them for it.
The smiling doctor with the thick gold necklace was found and L told him we needed a Cesarean section right away. He was unsure of the soft spoken American woman. Once again he said we should wait and see if the IV helped. But L persisted, looking to my husband for linguistic assistance and nodding incessantly as words poured out of her mouth in a mixture of English and Russian. Her face was stern and her words were pleading. Eventually the smiling doctor agreed to take a closer look at the baby.
I found myself waddling towards the ultrasound room, a white bath robe tied loosely around my expansive middle, my black slippers swishing down the hall.
Everything happened quickly once the baby’s extreme distress was proved on the ultrasound machine. An anesthesiologist was shaken out of her sleep and on her way to the hospital. The smiling doctor hurried off to prepare for surgery. The pediatrician on call put on her scrubs, elastic snapping over her shoes.
Back in my room ready for surgery, I perched on the end of my high hospital bed and looked around at the warm tan walls. A wooden desk and a matching chair stood against the wall in front of me. I watched my feet dangle above the cold white tile floor. They seemed separate from my body. I wandered where they were taking me and if I even wanted to go.
I thought about Elaina and Zoya sleeping in their Estonian made bunk-beds at home. Sergei and I had searched all over Kiev before purchasing the pale colored wooden beds. Thick cotton blankets pulled up tightly to the girls’ chins, in an attempt to keep the frosty night air that lingered inside our old apartment at bay. Their Babushka slept in the room next to them ready if needed for a drink of water or a trip to the bathroom. My little girls, unaware that in about a half hour their baby sister would be here.
Heavy footsteps came down the hall and I saw my smiling doctor who wanted to learn English poke his head in the door of my room.
I nodded that I was ready and suddenly two other men were at my side helping me down from the high hospital bed and on to a cold gurney with a thin white sheet. I settled and my husband came close to me. He covered my hands with his and prayed for God’s protection, for our child’s health and for a peace in my heart that would surpass my understanding. When he finished his prayer he looked at me and smiled. “She’s coming tonight!”
The orderlies wheeled my gurney down the hall with my husband walking next to us. Our friends set up shop in the waiting room. They didn’t want Sergei to wait alone and J wanted to be there to take a picture of all three of us together when the surgery was over.
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.
I realized my posts are REALLY LONG. So I am going to split them up more, hopefully make them more readable and ensure that I have enough material for 31 days.
She had not grown at all in between visits to the doctor.
I never went back home the morning we left the girls to build a fort with their nanny under the dinning room table.
I was admitted to the hospital because the doctor wanted to keep close watch on our daughter. It was decided she needed extra nutrients and vitamins which in turn would bulk her up and get her back on track. They also hooked my belly up with a monitor to follow heart beats. I lie in bed and watched the squiggly green lines on the black screen dip low during a contraction. So low that you couldn’t even see the line any more on the screen.
The jolly doctor was replaced by another doctor. He was a tall man with tan skin and a big smile. His fuzzy brown hair was gone in the back of his head. He wore glasses. A tooth in the corner of his mouth was gold. He looked the part of the new Ukrainian; an individual in Ukraine who was doing well financially during economic instability. The Ukrainian who figured out how to make money. The first two buttons of his crisp white shirt were open. A heavy gold chain sparkled on his neck. He wore two huge gold rings covering his knuckles and was excited to have an American patient because he was learning English.
Through out the afternoon my new doctor spewed and sputtered, paused and grunted, searching for the right words to say in English. I would answer him in Russian, just to let him know that I could and then wait for him to find the next word he was looking for. It did not seem to matter to him that I was in the middle of a crisis or that I really wasn’t in the mood to teach English as a second language.
I am not sure if he was aloof towards our situation or if he was just confident.
“Wait and see,” he liked to say. He claimed we needed time to see if the baby would respond to the liquid pumping vitamins and glucose into my veins. Whatever questions I had, “will we deliver the baby today?”, “is she sick?”, “why is her heart rate dropping at every contraction?” his answer was, “wait and see.” I assumed he knew what he was doing. I wanted to trust him but I had an uneasy feeling that the baby was in danger. Really, what did I know? I gulped my uneasiness down every time it rose up in my throat.
“It’s OK, don’t worry” the doctor told me over and over, speaking English with a thick Ukrainian accent, patting my leg.
And a few hours later I received a phone call that probably saved our baby’s life.
I felt the baby move early in my pregnancy.
One night in the bath I looked down at my cushiony middle and felt her flutter. She probably wasn’t any bigger than my finger. The warm water swirled around me in my pink Ukrainian bathtub while bubbles of Dove bath soap popped and fizzled around me. The tub was deep and wide. Sounds and smells that were unfamiliar to me muted by the running water. All I felt was warmth regardless of loneliness or homesickness or frustration over the difficulty of the Russian language. I took a lot of baths and the baby was quite active and hearty for well into my second trimester.
Then in my seventh month of pregnancy I noticed less movement. She became sluggish. I drank lots of orange juice and spent afternoons lying on my left side, counting kicks. I almost always felt a soft kick to reassure me of her existence.
Around that time my doctor told us the baby measured small. She was three weeks behind my due date in her size and development. I worried. At times my anxiety was overwhelming. I wasn’t able to do anything but lie on my bed and cry.
I went to the doctor and she assured me that I had nothing to worry about. It was something trivial; either we miscalculated the due date or I just had a very petite girl in there. She wasn’t worried the baby was small because there was consistent growth.
My Ukrainian doctor was a jolly woman. Jolliness is not a typical personality type in Ukraine. She’d smile and laugh and ask us about our two other girls at home while stretching measuring tape around my abdomen. Were they excited about the baby? Do they like living in Ukraine?
“Sergei, please tell her that we are concerned,” I’d cut in, giving my husband a list of questions and concerns at each visit. I wanted to be sure there was nothing lost in the translation. To calm me the doctor would order an ultrasound or a non-stress test and the tests would show that the baby hardly moved. The doctor simply said “ona speet.” “She’s sleeping,” and my heart beats slowed.
I talked to my mom on the phone one day. Her voice was distant. It felt like the telephone line really did stretch all the way over the ocean. I told her that something was wrong with the baby. All I really wanted to do was get on a plane and fly back to the States but instead Sergei prayed and I worried and time passed. Somehow I was able to convince myself I was overreacting.
And I ate a lot of Big Macs. Every Monday, our family day, we piled in to our white ford focus we bought finally after dragging our children around on sleds to the bus stop and metro trains for three years in Ukraine. We drove to an indoor mall in Kiev that housed a huge, modern grocery store and a skating rink, outlined by a dozen or so fast food places and lots of flower shops. Every Big Mac tasted like home. My pregnancy weight packed on.
We sat right up to the skating rink glass and laughed as beginner skaters flailed around on the slippery frozen surface. Our kids were appeased with vanilla soft serve ice cream cones that dripped down their chins on to their shirts as they watched the ice.
Sometimes Sergei took Elaina and Zoya skating. And then I’d sit alone with my Big Mac and my third little daughter quiet and still inside me and giggle as they crept along the ice, the three of them joined together by locked hands, digging their blades sideways in the ice to move forward. I’d laugh until tears streamed down my face.
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.
The decision to have a third child was made hastily. Somehow I felt ready. We were settling in to life in Ukraine. It had taken me two years of full-time language study to put myself out there and stumble around conversations with child-like Russian. Learning Russian was like looking at a really blurry photo, straining to see, finding all the colors and lines but still not being able to make out what I was looking at. And then one day the picture came into focus. I wasn’t just listening to a bunch of sounds that didn’t make sense. I was hearing words, then sentences, then full, albeit basic conversations that I understood. I became an avid eaves-dropper.
No longer did I crave obscene amounts of Coca-Cola because it reminded me of home or gulp down Tylenol every day because my head ached so badly from language classes. My girls were dressed in thick tights and turtlenecks any day that was under seventy-five degrees like all the other children playing outside our apartment on the chipped, old playground. They happily played at my feet in the evenings chirping away in Russian. Words in their father’s tongue came as easily to them as breathing. I was getting used to the idea that fish could be served at any meal; breakfast, lunch or dinner in one hundred and one different ways. I hardly ever made eye contact with people in public anymore.
The first year in Kiev was extremely lonely. I was a young mom stuck at home with little kids (Elaina was two-and-a-half and Zoya was nine months old). I couldn’t watch television or listen to the radio because I didn’t understand Russian. We did not have internet access. One cold winter night I remember sitting in our quiet apartment, kids tucked in and asleep, listening to the elevator go up and down or nine story apartment building. “Maybe next time it will be Sergei”, I said out loud to myself.
Finally, after two years, I had friends. Not acquaintances but friends who actually liked me in spite of really knowing me. Who knew it was possible to be friends with women on a deep level in a different language than my own? Even though it was exhausting, life in Kiev was starting to seem a little magical. Our family was settled. I was happy.
Looking back it feels like I mentioned the idea of another baby to Sergei and did a quick nod to God regarding the topic and the next day there was a little white stick sitting on the bathroom sink with two pink lines. I got pregnant the first month we tried for a baby.
Shortly after I took a pregnancy test, my husband brought home another stack of books for me to read. Once in a while he stumbled across a book vendor on the street that actually had books in English. Usually they could be found at the outdoor markets along with any type of vegetable you can imagine and others you’ve never heard of.
One book in the pile caught my eye. It was a book by Bret Lott called Jewel. Jewel’s story took place in the backwoods of Mississippi in the 1940s. Taken from true events, it is about a woman whose sixth child, Brenda Kay, was born with Down syndrome. I read the book in one sitting, completely ignoring my husband and kids, my usual practice when I actually had a new book to read in English.
While reading Jewel I thought about my baby, the size of a lima bean, growing inside me. The day I finished the book, I was sitting on the bed in our room. The sun setting, it was the kind of evening when life around you feels hazy. It was summer so the kids were already in bed even though it wasn’t dark yet. The air was tinted green. “I just couldn’t do it”, I told Sergei. “I could never be the mother of a child with special needs.” And instantly I wished I could take those words back. I felt threatened. There was a little life in me, paddling around, growing fingers and toes. God was knitting her together in my womb. All I could think of was “what if there is something wrong with this baby?”
My mother knits. I still can see her sitting in a chair in my childhood home. Already in pajamas, her hair wet from a bath although usually it was just after seven, a Coke sweating on the side table next to her on top of a napkin. I see her hands moving, click, click, click, click. Sometimes she’d unravel a sweater or a scarf that was nearly done. I didn’t see the point after coming so far to start over because of a few little mistakes. “Who wants to wear a sweater with mistakes?” she’d say. Later on in her life, she’d ignore them more often. I guess by then she wasn’t afraid of a couple mistakes.
A lot people think something that isn’t what they consider perfect is a mistake.
October is Down syndrome Awareness month.
I have decided to tell my story about having Polly in Ukraine. Posts will be pulled from my journals from that time and from about 45 pages of bad writing that have piled up in my hard drive. Some names will be changed as I see fit.
If you are new to this series, I recommend starting with Day One and reading to the present installment.
My kids love the “Olivia” books, about a cute little pig named, of course, Olivia. In one story she gets up for show and tell at school and talks about going to the circus with her mother. She claims that all of the performers and animals were sick and that she had to take over the entertainment. At the end of her monologue her teacher asks,
“Olivia, is all of that true?”
And she answers “pretty all true”.
The teacher then asks her if she is sure.
Olivia’s answer is, “to the best of my recollection.”
That’s how I feel about these accounts. I am telling them to the best of my recollection. The words are pretty all true.