Posts filed under ‘NICU’
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.
I felt guilty that I wasn’t there more often. I was not the vigilant mom I imagined I would have been in those circumstances. Whatever energy I had built up dissolved quickly while standing. No one offered me a chair. My husband finally brought me a chair on the fifth day of our stay.
I was sore and weak but the real reason why I didn’t stay long with my baby was because of my own self pity and fear. When I was there, I sat despondently beside my lifeless new born, feeling sorry for myself, almost embarrassed. I did not see her. I saw a sick, possibly defective baby. A baby the doctors insisted was mine. But I wasn’t so sure that she was the same little one who had prodded my tummy and kicked at my bladder all those months. There was no familiarity.
I imagined the nurses looking at me, nudging each other that this was the mom of the sick baby. I imagined half of them feeling sorry for me and the other half confused as to why I didn’t just abandon her.
No one in the nursery met my gaze. Most greeted me curtly first thing in the morning and then looked through me during the remainder of their shifts. After moving from surgery to post partum, I experienced the first of many hurtful words from the nursing staff.
“That’s what you get for thinking that you could have three normal children.”
In Ukraine, it is very common to have just one child. Two children is a large family. According to this nurse, having a third was just asking for trouble.
I sat in the nursery and watched the healthy babies through the window. It made me sad. Other post partum moms waddled in and out in their white terry cloth robes to take or deliver their babies. They looked tired, sore, flushed. But they looked happy. Chunky pink babies swaddled in gauzy blankets slept dreamily. Others thrashed and screamed for food. About four feet away, they were a world away from me. More then a window separated us.
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.
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.
This post is part of this weeks Hump Day Hmms. Click over to read more about what others are saying about comfort zones.
Last Thursday night I went to a Moms Night Out for my kids’ school. It took me an hour to figure out what to wear before I left. It was not going well. In a moment of pure insanity, I even tried on a pair of maternity jeans I had set out for a friend who is expecting. While admiring the boot cut fit, I schemed about a shirt that would actually cover the elastic band around my waist. Then I imagined bending over at the party and showing off my secret to neatly dressed, put together women and I peeled off the jeans and chucked them across the room.
Going to the party was definitely out of my comfort zone.
Which begs the question: where is my comfort zone?
And the answer: I have no idea. I have not been comfortable for years.
There have been many changes in my life in the last six years. Sometimes I liken myself to having gone through menopause several times.
First we moved to Kiev, Ukraine. Elaina was 2 1/2 and Zoya was 9 months old. For two years my husband helped out with a church plant in another part of town while buying groceries, paying bills and looking after his little foreign family. I studied the Russian language full time and learned to walk to the Metro station looking down at my feet. Things that came easy to me, American mannerisms like smiling at strangers, wearing your shoes in the house and Kraft Macaroni and Cheese were boxed up and left in my mom’s attic over the garage in Michigan.
Time went on. I tucked comfort around my children in our little seventies style apartment like a warm fleece blanket the only way I could think of. I mixed our new culture with the old, pouring the American Happy Birthday song in with the custom of not wrapping birthday gifts in Ukraine. We dressed the girls up in costumes for New Year’s Day and pretended it was Christmas. I found the only store in Kiev that sold Lasagna noodles.
Everything I did in Ukraine was uncomfortable, until one day it wasn’t, and I was able to conjugate the verb ‘to buy’ in Russian’s past, present and future tenses. After three years there I noticed friendly faces around me, offering to show me how to make a warm compress for my daughter’s cold instead of reaching for Tylenol. We were part of a church that was growing closer to one another and to God, and my oldest daughter was learning addition and subtraction in her Ukrainian preschool.
I almost felt comfortable. So we decided to try for our third child.
God blessed our efforts and along came Polly. She was born there in Ukraine, three weeks early, in a private hospital that looked a lot like our western hotels. After her birth I had to learn a new language. I had to find out how to speak special needs; words like Down syndrome, IEP, therapy, hypotonia.
We landed (twenty days overseas in the NICU, packing our lives up once again, saying goodbye to our church) in Michigan and attempted to find comfort in our new surroundings once again.
I thought that moving back to the States would be easy. I already spoke the language here. Only, my time overseas changed me. A large part of me identified with Ukraine. I was out of place in church. The music was loud. There were too many faces. Every thing was so big and people had a lot of stuff. I came home from Zoya’s preschool round-up drenched in sweat. I remember standing in the school supplies aisle at Walmart, overwhelmed by the variety of paper and pens and lunch boxes.
And then last summer, we moved again, from Michigan to Chicago, from rural to urban, from middle class to upper class, from being average church goers to my husband pastoring a church.
And once again I am out of my comfort zone.
So, you see, there really is no such thing as small talk in my life. Which is why I dreaded the Mom’s Night Out last week. My small talk either gets big quickly or it gets quiet. Simple questions like, “where did you live before you moved here?” or “what does your husband do for a living?” or the ever present, “tell me a little bit about your kids?” do not have simple small talk answers.
After I found an outfit that fit, the party last week wasn’t that bad. I made small talk. The questions came up and I answered shortly, “we lived in Ukraine,” “my husband is a minister,” “I have three girls; seven, six, and two.”
My life has changed so much and so quickly, at times it’s like watching a three ringed circus. I have the poles and the plates, I am just having a hard time getting them all to spin at once.
In the midst of all these changes, I am finding that comfort is not really the point.
I speak different languages; special needs, English, Russian, Christian, urban, rural. And every language molds me a bit more into who I am to become.
I guess I am learning to speak small talk here in Chicago as well and to be OK with it.
That, in and of itself, brings me a bit of comfort.
The names in the following post have been changed to protect those unknowingly written about on my blog. The people are real but their names are different.
You never know who you end up sitting next to, or what their story is.
I posted about Elaina signing up for gymnastics. I waited outside her class with a book on the first day. I wasn’t very interested in reading. The book wasn’t that good.
Another mother sat next to me. Her book looked better than mine. I asked her about it and we chatted a bit here and there. She laughed when I overheard someone mention that the gymnastics class was for experienced gymnasts. The look on my face communicated that my child was a beginner. Elaina would just have to pretend that she knew what she was doing.
I remember thinking this lady was nice.
The next week, a rainy Tuesday, S had a meeting. So off to class we all went; me, Elaina, Zoya and Polly. I had a headache. Polly was fussy. Zoya decided spur of the moment that she really wanted to take gymnastics instead of ballet so her nose was out of joint.
We shuffled up the cement stairs and into the building. Polly straddled my hip, coat unzipped and falling off; her hair was coming out of the ponytail on the top of her head. It hung in her face.
The class is just an hour, but I wasn’t about to hold Polly on my lap for the duration. We couldn’t play outside at the park because of the rain and the floor looked pretty dirty, well, dirty enough that even this seasoned mother of three wouldn’t put her youngest down to toddle around on her hands and knees. Plan B was to drop Lainie off and head home. Sergei would pick her up later.
The nice mom with the good book walked in a few minutes after us. Immediately, she noticed Polly.
“You’re the minister’s wife, right?”
I was surprised. Most people who know that S is a minister try to avoid the topic.
“Yes, how did you know?”
“I’m Sarah, Charlie’s mom.”
My mind jogged back to last summer. We were new to Chicago. One day S came home from the park with the girls. He told me that a lady came up to them. She wanted to meet Polly. As they talked, he found out that she, too, had a child with Down syndrome. But her son had serious health issues, and he passed away.
“She gave me her phone number and wants you to call her,” he said.
I was scared to call. While punching in her phone number on my cell, I took a deep breath. Waiting, I looked out the window. The view was still new to me. The Japanese maple tree planted in front of the porch was in full bloom.
I left my name and number after the beep.
A few days later, she called back.
It was getting dark outside. All the windows were open. People chatted as they passed our house on the way to a restaurant or a bar. S figured out how to get a few stations in on the TV with the rabbit ears and we were watching a rerun. I can’t remember what show it was. But I do remember our house was barren. The living room held two chairs, empty bookcases, the old television. Boxes lined up against the wall.
We talked about Polly for a little while. I briefly covered our history, …lived in Ukraine for a few years as missionaries…had Polly there…she was very sick at first, in the NICU for twenty days…on the sixth day a blood test confirmed the Down syndrome…six weeks later we were on a plane, headed back to the States, primarily to care for Polly, holistically, because we all needed the care. We talked about Early Intervention in this area and about therapists who were good. I wrote down her recommendations.
Then I asked her about her son.
And she began to cry.
“He had a lot of things going on. His little heart just couldn’t take it all. When we found out he had Down syndrome, I told my husband we could handle this. I knew that we would have struggles, but I didn’t think Down syndrome was that big of a deal. But his health issues were something different, entirely.”
After Charlie died, Sarah started a preschool named “Charlie’s Place.” The goal of the preschool is to provide a safe, learning environment for all children. Sarah’s dream is to see the preschool integrated with typical kids and kids with special needs, so that they can learn from one another.
That evening, sitting in the dinning room, in the dark, I said something to this mother that still haunts me sometimes.
“It’s taken me a while to grieve Polly’s diagnosis.”
I did not decide to grieve. When Polly came along it’s not like there was a drum roll somewhere off in the distance. I did not say, “And now, officially, I will fall apart.” It happened gradually. It was like a small cloud, quietly, most assuredly taking the place of th sun, until you are left in a shadow.
I felt my heart sort of tip a bit after the words were out of my mouth. I gasped. I was ashamed. This woman was actually grieving her child. She couldn’t hug him anymore, or kiss the insides of his elbows, or watch him smile and hear his laughter as he swings back and forth at the playground.
These are the things I’ve been thinking about this week: Writing about Emma and then, Ella, running into a mother who is bravely living life despite her great loss. Walking around the neighborhood, pushing Polly in her pink polka-dot stroller, Lainie and Zo leading the way with their brightly colored helmets, peddling as far away from me as they dare. Indubitably stopping at a street corner.
I can’t help but pay attention to the blessing of health. And at least, for today, not take it for granted. I’ll clap for Polly in therapy every time she puts another block in the bucket. I’ll act silly, smile and dance around when she cruises up and down the couch. I will let Zoya read me “Not Dots” for the fiftieth time, simply because she is reading. I will not turn a deaf ear to Elaina as she talks to me again about friend troubles at school.
Polly’s face lights up when her favorite therapist walks through the door. The one who lets her pick what to do next, who applauds after an impromptu song, who lets Polly pick the same book every week, because she knows it’s her favorite. They like to play with playdoh together. “Rolling, rolling, rolling, rolling, roll it out, roll it out.”
This is one of the therapists Charlie’s Mom recommended.