Posts filed under ‘Hospital stays’
Polly is doing well.
It’s hard to believe that a week and a half ago she was using both of her hands to lift up her right leg and move it. As Polly was leaving for school this morning she was practically running out the door.
Looking at her a person would be hard pressed to see that she has Moyamoya and requires pending brain surgery.
Yesterday we took her to outpatient physical therapy at the hospital. The therapist was impressed. Polly’s large gross motor function in her previously paralyzed leg is almost fully back. She encouraged us to work on Polly’s smaller movements, for her to continue to wear her SMOs (feet and ankle braces) and for her to keep moving, which does not seem to be a problem.
Our therapy assignments include making forts under the dinning room table, crawling up and down the stairs and tickling. Really, that’s what we were told. No problem!
So for now, Polly is back to regular life. She doesn’t have a clue that next Wednesday (November 4th) she’ll be under anesthesia for her angiograph (a very involved test that will determine exactly where in her brain surgery needs to take place). After that test, her first surgery date will be set, probably in the middle of November.
In an effort to prepare Polly for her upcoming stints in the hospital, I plan to purchase a play doctor’s kit. We’d like Polly to realize that there are many things at the hospital that are done that do not hurt; blood pressure, temperature, checking reflexes.
If you have any other ideas about how to prepare Polly, I’d love to hear them.
And of course, please continue to pray for her 1) that her little body will stay seizure and stroke free, 2) that God will guard her heart and mind, providing her peace and resilience to adjust to her life in the next few months. Pray for Sergei and me that we will continue to trust God for Polly’s health and ultimately to maintain the understanding that not only is the Lord with us through this experience but that he cares for Polly, so much more than we can even fathom.
I am humbled by all the blogs and messages that have posted Polly’s button reminding us all to pray. I am also attempting to keep the rest of our lives functioning normally; Elaina is going to brownies and Zoya needs to practice her piano. Evie is back on board with her sensory diet and we’ve started her school evaluations now that she is three and has aged out of Early Intervention. It’s challenging as four out of six of us are battling colds (thank God, so far Polly is staying healthy).
Polly has some big shoes to fill, health-wise. So far, so good.
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.
“Then God looked over all he had made, and he saw that it was excellent in every way. This all happened on the sixth day.” Genesis 1:31
The sixth morning of Polina’s life was bright and clear. The air outside was crisp. The sun was already high in the sky.
I stood looking at my daughter, my hand pushed through the plastic window, resting gently on her leg, my fingers gripping her heel. I was happy because she had her eyes open.
It was a busy morning in the nursery. People rushed around, going this way and that; some were washing equipment, others changing babies, giving them wash cloth baths and putting on clean fitted sheets in the cribs. I wasn’t used to so much action. It made me tired.
About this time every morning I would meet up with the doctor on call, the one looking after Polly. I was not surprised when I heard footsteps coming from behind. Turning I saw the rock star Pediatrician.
“Dobre Utra” I said, greeting her with a smile.
The Doctor looked down at her feet and when she looked up her gaze did not meet mine. She looked passed me and focused on the sunshine streaming in through the window.
The morning after my daughter’s traumatic birth a sharp needle broke through her placid skin, diving into a vein. A vile quickly filled with her blood. Then it was closed up, labeled and sent off to be tested for an extra chromosome in her cells.
We were told it would take two weeks to get the results.
Polina’s blood was to determine our future.
I have always been afraid of heights. This fear is shared with others in my family; my father, my oldest daughter. In middle school I was the kid who wouldn’t go on rides at amusement parks. I worked hard those days, pretending I preferred the carousal or that I really did think my recording of The Wind beneath my Wings had talent, but everyone in my class knew that I was scared.
I am even a little jumpy in elevators. Anywhere you can fall.
“I am here to tell you, with disappointment, Gillian, that your daughter has Down syndrome.”
No “good morning, how are you today?” No “will you husband be here soon because there is something I’d like to discuss with you.”
Sometimes I dream that I am free falling. They say if you actually hit bottom in your dream that you are dead in real life.
I stared at the woman in front of me. I blinked a few times. I hit bottom.
My earliest memory of a person with disabilities is enclosed in fear. I was a young girl, a toddler really, at an outdoors barbeque with my parents. The whole morning I had played and swam and ate watermelon. That is, until I saw a woman with Down syndrome. I noticed she was different right away and it scared me. I found a place to hide, a tent. All day long my parents tried to get me out of the tent. They lured me with ice cream and hamburgers. I wouldn’t budge.
I looked around my daughter’s nursery room. There were cribs and nurses and diapers and equipment. But there was no place to hide.
The doctor droned on. Her painted face was hard, like a brick wall.
“So what do we do now?” I cut in.
I wanted to fling myself on the floor, bang my fists and tare my clothes but instead I stood silently, blankly. As adults we want to look together. It is one of the most nagging sins.
The Doctor talked about other health concerns. Her words had no sound. I watched her painted face contort as she mouthed words. My ears felt like they were stuffed with cotton balls. It was like I was under water.
When there was a lull I blurted out a hurried “spaseeba”, my attempts at a thank you.
A better woman would have bent down and drawn close to her baby. She would have looked into the baby’s sleepy eyes and vowed to love her and to protect her and to treasure her.
I turned and ran out of the room. I did not even look at my child. If I stayed, I might have turned to salt, like the woman in Genesis who looked back to her city as she fled. I reached my room across the hall, already sobbing and yelling. And some how I was detached, it was like I was watching a scene unravel in front of me. I didn’t recognize who this person was crying and screaming. I fell onto my bed and howled like a person getting put into a straight jacket.
In the last five days while sitting for hours in my quiet tan hospital room I had considered every scenario in my head. I played them over and over and prayed to God for strength. I knew there was a great possibility that my daughter had Down syndrome. But I had never thought about how it was going to feel.
Instantly, several women surrounded me. One nurse patted my arm. Someone handed me a small plastic cup filled with thick purple liquid. Each woman carried on her own personal monologue directed at me. Dazed, I gulped down the syrup. The rock star stood closest to my head on the right.
“Stop crying”, she told me. “Yes, it is terrible that your daughter has Down syndrome. But there is nothing that can be done. Now stop crying!” The other women nodded in agreement, still patting me and saying “neecheevo, neecheevo, it’s nothing, Gillian, it’s 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.
The next morning I woke early again. Looking around, I remembered where I was. The television was back in the corner. The walls were still bare and I was still sore and confused and scared.
The nurse suggested I get up and go to the bathroom. She was obviously out of her mind. My middle had been sliced open and a baby, plus a large liver looking thing had been cut out of my body. I was sewn up with heavy green thread, the kind you see on an old rugged pillow. The doctor tied a bow at the end of my incision.
My catheter was removed so I no longer had a choice. I could either wet myself or get up.
I was moved downstairs across from the nursery. It was like an apple dangled out in front of me. I was just across the hall from my daughter. By day two I was up and moving, painfully, slowly.
My mother had applied for her passport with the intent to come to Ukraine to help with the new baby. After she heard of the early arrival, bags were packed and without hesitation she boarded a plane for the sake of her daughter.
The first time I took a shower in my hospital room was three days after my c-section. My mother and the nurses where in some sort of cosmic agreement, although they could not communicate, that I needed a shower. It was in the afternoon, the first actual day of my mother’s experience in Ukraine. She had flown in late the night before.
My mom’s remedy for most things in life is cleanliness. Baths, showers, cleaning, generally anything hygienic is good for the soul. One time when I was a kid, I was complaining to her about a particularly hard day. Her advice to me was, “go shit in the tub.” And unsurprisingly, I felt better after a half hour of uncontrollable laughter at her slip of the tongue.
She helped me lug my wobbly body, donned with one enormous Always maxi pad that was supposed to catch buckets of blood while stuck to a flimsy pair of gauze underwear. From just under my rib cage down past my unmentionables, my body felt like a horrible nagging tooth ache every time I moved. I clumsily undressed and my mom helped me step up into the shower. At thirty-one, I am sure that my body had expanded and changed quite a bit since she last saw me in this light.
The hospital was similar to a hotel in the States. It was like all of this was happening at a Best Western. Little bottles of shampoo and conditioner and soap lined up on the shower wall ledge waiting to wash my body.
As a missionary I have not had a good relationship with travel size toiletries. Supporters of our foreign work think we either cannot afford our own products or that the country itself does not sell soap. People took it upon themselves to save up shampoo, lotion, conditioner and soap from their hotel stays and ship them to us in care packages. Good friends of ours working in Mexico received already used tea bags that were still “good” for a second time around. When I’d get care packages like this, I’d throw it all in my bathroom closet and walk down to the supermarket. There I would get a big bottle of Dove shampoo, some Pringles chips and a couple candy bars.
My body ached as I attempted to get clean in the shower. It felt like there were little flecks of sand in the water, but I just assumed I was mistaken by my own filth. The worst pain was trying to lift my hands up to wash my hair. That motion localized and climaxed the pain of my incision. After doing the best I could, I tenderly stepped out of the shower. Drying was going to have to be an air thing as I reached for my fresh pair of queen size gauze underwear with the Always maxi pad, compliments of the hospital.
By the time I was in my new throw-away underwear and fresh night gown I felt like a wilted flower that had been pounded on by a harsh rain. I was clean, but nearly wiped out. Hoisting my thick lifeless belly up onto the bed I commented to my mother about the little pebbles of dirt that were all over the shower. “That’s what surgery will do to you,” my mom said in all her wisdom.
As soon as I was on the bed I was asleep. I don’t remember getting from the shower to the bed. Later we found out that the hospital did have a problem with dirt in the water for a few days. By the end of the first week the dirt was gone.