Friday, December 24, 2010


This morning, Olivia was fed and bathed. I lay her on our bed next to the baptism gown that had first been worn by Mark's father, then by every baby in the family ever since. The gown is beautiful- handmade with lace and tiny buttons. From her birthday suit to this special gown, I buttoned our angel into it as she smiled at me. Then, she promptly spit up on it- leaving her mark and making it her own.

We drove to the Church of St. Paul and were surprised by the number of cars in the parking lot. When we stepped inside the church we were asked, "Are you here for the funeral?"

"No. The baptism."

Life beginnings. Life endings. Occuring at the same time, in the same place. This does not escape me, but follows me down the hall, past the people standing in small groups, speaking in whispers, cloaked in mourning, saying 'Goodbye.'

Just a year ago, cancer loomed over me like a death sentence. Today, I carry a new life into this church. As I walk, I am thinking about the fine line that separates a baptism from a funeral. My heart is heavy for the people I pass. I hurry and don't look at them directly- so I don't intrude on their grief. Then, Olivia smiles and coos. People smile back at her. I realize, this line only exists in my mind. With a smile, the line dissolves. This is life. We all share it.

We were directed to the chapel. This is the same chapel where Mark and I were married. Our families gather around us. Mark's childhood friend, Mark, and his wife Meagan stand as Olivia's Godparents. Prayers and candles. Grateful tears mingled with the fussing of a baby, the joyful voices of toddlers and the explorations of small children. Outside the large windows- the beauty of nature. Towering trees, glistening snow and a squirrel hopping happily along the drifts.

After, there is cake and visiting at our house. The baptism gown is carefully removed and given to Mark's mother, who will hand wash and store it for the next baby.

Throughout this day, Olivia smiles...

Sunday, November 21, 2010

Mother's Sharing Milk

My prayer for milk went out like a clarion call.

My sister-in-law, Kristi, gave me some milk from her freezer and spread the word throughout our church. My sister, Amy, went to her doctor to see if there was anything she could do to promote lactation (her youngest son is 4). On the internet, I found a group called "Milk Share" and, on Facebook, I found a similar group called "Eats on Feets- Minnesota." These groups help facilitate milk sharing between mothers who have more milk than their babies need and mothers who have none. They offer information to both donors and recipients to keep the process safe.

Before Olivia was born, I never thought about sharing milk. I took my own ability to feed my babies for granted. I am grateful to the mothers who donated their milk to the milk bank that has fed Olivia since her birth and I accept that milk banks must always keep their limited supplies going to those babies who are fragile and need it most.

Of course, there is some controversy about mothers sharing milk amongst themselves without a hierarchy involved to oversee the process. Keep in mind, I am not standing on a corner holding out a baby bottle all willy-nilly. I have done my research and I trust this process- a process inspired, created, and set into motion by mothers.

These past few weeks, Mark and/or I have driven to Blaine, Andover, Ham Lake, Champlain, Shakopee, Zimmerman, St. Francis, Mankato, and Rochester to meet these mothers. Kristi even calls to let me know when someone has left me milk in the church freezer.

"Does putting milk in a church freezer make it Holy milk?" I ask my mom.

"It's all Holy." She says and I agree.

My prayer was answered by a sisterhood of mothers-

Kristi, Jocelyn, Meghan, Ting-Hsien, Christa, Justine, Ashley, Theresa, Suzanne, Shannon, Aparna, Amy and the Moms at the Church of St. Paul...

This mother is Thankful. Olivia is, too :)

Friday, November 12, 2010


Tonight, we were at a Girl Scout ceremony, watching as Natalie and the girls in her troop received the badges they had earned. I was standing at the back of the room holding Olivia, so I could step out in case she started fussing. Olivia just looked around taking everything in. Standing next to me was a mother trying to keep her two young sons quiet.

Names were read off- one at a time- and a pause as the girl stepped forward to collect her badge. Suddenly, in the silence, Olivia started passing gas. Loudly. The woman next to me gave a disapproving look to her boys and whispered, "It is not appropriate for you to be farting in public. We have talked about this."

I felt kind-of guilty that two innocent boys took the blame for Olivia's toots, so I approached the mother after the ceremony and confessed that my baby was the source. A puzzled look crossed her face as she looked at my little baby. She probably recalled the decibel level of the fart. "That's funny." she said and started laughing. (I wonder if she thought I was covering for myself)

Tuesday, November 9, 2010


Fear is a dangerous thing. Fear makes swipes with sharp claws. I know these claws. Fear has impaled me before and pulled me close and drained me of hope and and filled my heart with horrible images that felt real. As fear bullies me into a corner, I realize I am holding it as tightly as it is holding me.

I decide to follow my own advice and I let go. I let go of fear. I smile in the face of fear. I feel grateful in presence of fear. I direct my attention away from fear and back to the miracles...

This simple choice changes everything. 

Wednesday, November 3, 2010

Mother's Milk

Just today, I was expecting a shipment of frozen breast milk from the Denver Milk Bank when I learned they are not planning on sending any more. No notice. No gentle weaning process. Just stopped. Done. Final. Period. I look in the freezer and count the bottles. Olivia is now taking about 24 ounces a day. I have enough for 3 more days.

I make a bunch of phone calls. "But she has a prescription." I say, "Her doctor wants her on breast milk for one year." I am given the run-around. I call the numbers and wait on hold while the soothing music on the line taunts me. I talk to our insurance company. I speak with our pediatrician. It feels like a fight. My voice sounds increasingly defensive and angry to my ears. Deep inside me, I feel the seeds of panic stirring.

I take a break. I take a breath. I understand there is only so much donated breast milk in the world and we have to share it. We have to prioritize. There may not be enough for every baby. I understand this...

...but I am a mother. The deep need to protect my baby, to feed her, to love her is encoded into every single cell of my being. There is no switch. It can't be denied. With terrifying intensity, it draws a line in the sand. Mothers are a profound force in this world possessing a rare willingness to risk everything, to even sacrifice themselves... for a child.

I leave messages that probably sound like a crazed woman left them. I recount the bottles. I kiss the forehead of my sleeping Olivia. Amore takes a break from her post next to the baby- drawn to whoever needs her the most- and she trots along behind me like a shadow. I stop to look at myself in the bathroom mirror. There are tears in my eyes. I look defeated. Like so many others, my eyes drop to my chest. "Damn boobs!" I yell at them. They just sit there pretending not to hear me at all.

Tuesday, November 2, 2010

Grandma Joyce

I stop to visit my Grandma Joyce who lives in a senior apartment complex. She buzzes me in and I start to walk through the lobby area that has a large community room off to one side. There are people sitting in groups of 2 or 3, visiting with each other.

"Hey!" a woman's voice calls out, "You get back here with that baby!"

Now, I was raised to respect my elders, but I hesitate. I turn to meet the gazes of three women sitting next to each other. Yes, she is talking to me. I still have to pinch myself sometimes when I look down and see this sweet little girl in my arms. I can hardly believe she is here, safe and sound, and she is mine. Then again, we belong to each other. So, I walk back and share the baby. They look and touch, remembering their own babies.

"Would you like to hold her?" I ask.

"No," they shake their heads, "she's too small."

After awhile, my grandma comes looking for me and Olivia.

Back to Work

I have been back to work for over a month now. I know I am lucky to have a job and health insurance and that I am able to take some time to ease back into my 12 hour shifts. Mark, Natalie, Larissa and Amore have been taking good care of Olivia.

Going back to my pre-cancer job. Remember, I left with pink and purple highlights and now my hair is about an inch long. People who just know me in passing must think I was out touring with my band for awhile.

Children's Hospital has been undergoing major additions and remodeling over the past year. I weave my way through the halls and units, feeling like I am lost in one of those corn mazes.

Someone blurts out, "Hey, you got a new haircut! It's really short!"

"Courtesy of Chemo." I say, "Actually, it's getting longer."

People hug me. People get tears in their eyes. People smile. I realize how many people have travelled this bumpy road with me this past year... carried me... prayed for me... saved me...

Amusingly, people look at my chest. Stare at my chest. Never before has my chest had this much attention. And because I work among healthcare professionals- knowledgable and curious people that they are- I am asked "Are they real? Or did you have a reconstruction?" I always find this question hilarious, because my boobs are still the imperfect, kind-of lopsided boobs they always were. They are not special. Remember, they tried to kill me (Left one, I'm still talking to you).

The people in my department have taken it upon themselves to look out for me. Soloman came in and saw me eating cookies and said, "I hope that's not your lunch. You have to eat healthy things."

I told him, "The way I see it, I'm going to die, so I better eat cookies while I can."

"Sarah," he laughed, "you're not going to die."

Yes, I am. We all are. Simple fact.

In the meantime- Let go of fear. Smile. Feel grateful. Notice all the miracles occurring- all around you and inside you- all the time. Do what you love. Hug children. Pet dogs... Have a cookie :)

Monday, November 1, 2010


The weather has been so beautiful, warm and sunny. We have taken our girls to the apple orchard, to a pumpkin patch to choose our future jack-o-lanterns, then tonight we went to my parent's house for trick-or-treating with their cousins. This year I bought Olivia's costume, but Natalie and Larissa wanted to try to make theirs.

Nan wanted to be a mummy. We dug through her dresser and found an old light-colored sweatshirt with sweatpants. I found a white sheet on clearance and we cut it into strips, then sewed the strips to the sweatsuit. We also made a mask for over her face and cut holes for her eyes.

Larissa wanted to be a chocolate-chip cookie. I found some remnant fabrics and cut 2 large circles out of light brown, then I sewed around the edge leaving openings for her head, arms and legs. Larissa cut the chips out of dark brown fabric (they looked more like chocolate chunks- yummy). We glued the chips on.

Olivia was warm and snug in her skunk suit. She only sprayed a couple of trick-or-treaters when they suggested that she looked like a doll- even so, she just looked cute.

Amore, Nora, and Daisy greeted children at the door, giving kisses as treats and trying to sneak treats from the bags of the unsuspecting. *Teachable Moment: Chocolate is deadly to dogs. I don't know why. I agree it's unfair. No, not even a tiny piece. They got some dried sweet potato treats instead.

By the time we got home, the mummy was becoming unraveled, the cookie unglued, the skunk was a bit stinky, and Amore was stealing candy wrappers in a hopeful way :)

Sunday, October 24, 2010

Doggy Kisses

Olivia's apnea spell got me thinking. When I worked as a nursing assistant at Children's Hospital, I remember the OT department coming with a bag of different bottles and nipples to try with babies who were having various feeding difficulties. I thought about Olivia and how she appeared to get overwhelmed with sucking, breathing, swallowing, and maybe swallowing a lot of air in the process. I found a curved bottle that keeps the nipple filled and the bottle is also designed to vent the air out. Olivia has had no apnea spells since. Of course, she is also growing more mature- which plays a huge part. Also, Amore likes to lick Olivia's face or ears or feet which tends to keep Olivia awake and focused during feedings. So, everyone is doing what they can to help :)

We are so happy Olivia is home. She doesn't cry much- only when her diaper is changed or when she is hungry. She is held or carried much of the time- so I can make up for all the time she spent away from me. When I hold her close and look at her- I am still in awe.

Natalie and Larissa are getting ready to start school. Nan is in Fifth grade and Larissa starts kindergarten. For now, we try to squeeze the most out of our last days of summer. One more swim, one more short road trip, one more picnic in the sun... cherishing every day.

Monday, October 18, 2010


                     Olivia Joy and Great-grandma Marlo

There are people in life you don't get to choose- your mom, your dad, your siblings, your kids, etc. I have always trusted these people as my guides, my teachers. Placed in my life by a higher power, I took them to heart to learn from them. These people are gifts from God.

There are people in life who are chosen for you- your teachers in school (unless your parents were choosey for you- mine never were), the doctor who is available to see you for your back pain, your colleagues at work, your classmates, etc. These people are the wildcards- incompetent or nurturing or creepy or life-changing or users or absolute treasures. You will never know until you jump in.

There are people in life you do get to choose- your friends, your spouse, your sweet little dog-person Amore, etc. These people are the gifts you give yourself...

Today, Olivia and I went with my mom to visit her mother in the nursing home where she lives. My Grandma Marlo gave birth to my mother when she was 17, was diagnosed with multiple sclerosis in her early 30's and moved into a nursing home before I was born. By the time I was old enough to talk to her, MS had already affected her memory and speech. My mother and her mother had issues between them that would never be resolved- until a choice was made to let them go. I will always remember the chill that ran through me years later when my mother was diagnosed with MS herself.

About a week ago, my grandma fell out of a sling that was being used to lift her in and out of a bathtub. She hit her head and a CT showed a skull fracture. Her level of consciousness had changed and it was possible that she was dying. Relatives from far away were notified and came to her bedside to see her.

It took us a long time to navigate the halls and elevators in the nursing home, because people kept stopping me to see the baby. So, I stopped and shared the baby.

We crowded into my grandma's room with my Great-Grandma Doris, my Great-Aunt Connie and Great-Uncle Jerry, my Aunt Tammy, and Uncle Tony, along with my grandma's 100+ year-old roommate who kept looking at Jerry, asking "Who is that young man?"

After hugs and kisses, we started passing Olivia from arms to arms. Grandma, we were told, had been unresponsive for days. She showed no purposeful movement, but would grimace occasionally which sent someone in search of a nurse for more pain meds. We moved around the small room, changing places in the chairs and on the floor- taking turns talking to Grandma. I moved to the foot of Grandma's bed, my mom sat at the head.

                      Olivia Joy with Great-Great Grandma Doris

Aunt Connie talked to me about cancer. Years ago, she had been treated for ovarian cancer. She had been through chemo, hair loss, hot flashes. Her and Jerry told a story about her going on a 'trial run' in public with her wig on. They laughed when remembering how self-conscious Connie had felt, how she had panicked and had to go back home...

Olivia started to cry and I got her bottle ready. After she was changed and fed, she made the rounds again. When she reached my mother's arms, my mom gently lay Olivia across Grandma's chest and talked to her about the baby. Suddenly, Grandma opened her eyes. She moved her lips. Her face flushed. Her arms and hands moved to touch and hold the baby... Olivia and miracles go hand in hand...

We talked and laughed and cried and hugged. Uncle Jerry took a rare photo of 5 generations of our family. On the drive home, I could not help thinking about these people who were chosen for me. Though I do not see some of them very often, I know- in my heart of hearts- they are always there for me and I feel the deep connection between us.

I can't help thinking, cancer has widened this circle... 

                              Five Generations

Sunday, October 17, 2010

Back to Work

Today, I met with a woman from Human Resources at Children's Hospital and my new manager to discuss my return to work. Since I have been on my leave for a year now, I need to go back to work or lose my job. I really need my job, because I need my health insurance. Our plan is to ease me back into my position (I work 9am-9pm Saturdays and Sundays) over the next month or so.

I hold my sleeping baby and, as usual, my heart feels torn at the thought of leaving her. I have always taken off more time after my babies were born. Though I wish I had another month or two off, I know I am fortunate to work part-time. Olivia will be in Mark's hands and Natalie and Larissa love to help with their sister. I feel both nervous and a bit excited to get back to work.

Sunday, October 3, 2010

Nanny for hire- will work for treats and kisses

                                       Naptime with Amore

Our family is settling into a routine. Amore takes her 'job' very seriously- watching over Olivia, cleaning her face and feet, taking naps next to her. Dr. Wheeler, from Children's Hospital, evaluated the download from Olivia's apnea monitor and called to tell us that she is having no apnea spells, so we can just use the monitor when she is unattended or sleeping at night. She is eating well and growing. Her weight is around 5-6 pounds.

On September 2, I had blood drawn for lab tests. Then, we stopped at the clinic down the hall. Dr. Laudi smiled as he gently took Olivia into his arms.

"Looks like you like your baby." Mark joked.

"She is beautiful." Dr. Laudi said, "A blessing."

Dr. Laudi carefully passed Olivia to his nurse, Beth, so she could have a turn. Of course, we forgot to bring our camera and the pictures I took with my cell phone didn't do justice to the image before me. I guess I have to accept the fact that we don't always get a hard copy of each special moment of our lives. Sometimes, we just see the picture through our eyes- letting it fill us with light and shadows and magic- then, we store it as memory in our hearts.

Sunday, August 29, 2010

Text to my mom tonight while she was at work:

One naughty dog for sale. She stole one bottle of milk, one bag of goldfish crackers from the counter, two Barbie dolls... and the plunger from the bathroom.


Friday, August 13, 2010


In the hospital, Olivia was fed on a schedule: 2, 5, 8, 11, repeat. She is starting to feed ad lib, but we still have to make sure she gets enough to eat, so we use the set schedule as a guideline.

This morning at 1:30am, I heard Olivia pooping and found she had pooped up her back, so after I cleaned her up and changed her clothes, I decided to get her bottle ready.

I have always breast-fed my babies in the past- breast milk is especially important for premature babies- but due to breast cancer and the meds I am on, sadly, I cannot breast feed Olivia. In the hospital, she was fed donated breast milk that is mixed with a bit of formula to increase the calorie content. After doing some research and speaking with my insurance company and doctor/ nurse practitioner, we left the hospital with donated breast milk and a prescription for breast milk from the breast milk bank in Denver, CO.

To be the recipient of such precious gifts is both humbling and profound. It reinforces my deep belief that we all belong to each other. My life has been touched and changed and saved by people who- willingly, generously, even anonymously- send a part of themselves out into the world on behalf of another...

I take Olivia into the living room to feed her, so I can monitor her breathing and color in a brighter light. I sit next to Mark on the sofa and settle in front of the TV. Olivia is hungry and eats quickly. I have to pace her a bit. Then, her apnea monitor goes off. She has stopped sucking. Calmly, I change her position and rub her back. Her lips are turning bluish. She isn't breathing. Her arms and legs go limp. I stand up, pinch her feet, rub her chest... Beside me, Mark's brain flips into emergency management mode.

"When do we start CPR?" Mark asks.

"Wait," I say, stimulating her more vigorously, "In the hospital, they had oxygen."

In his head, Mark is working out calculations. 'How many minutes since Olivia's last breath? It takes four minutes for an ambulance to get to our house- IF there are no trains running over the 2 tracks in between. Sarah is in her pjs and I am in my underwear. Natalie and Larissa are sound asleep in bed.' Calculating, timing...

"Do we call 911 and wait for them OR do I drive and you do CPR?" Mark asks out loud.

"Wait." I walk in front of a blowing fan and Olivia takes a breath. Her little self pinking back up. Her arms and legs moving around.

Mark lets out a sigh of relief, "How many times do we get to do that?"

Olivia lies in my arms, oblivious to the cardiac arrests she was nearly responsible for. I imagine Mark and I laid out on the floor clutching our chests with Olivia saying- in Steve Eurkle's voice- "Did I do that?" I start to laugh, chasing away the tension.

"Guess she wanted a little preview of the pearly gates." Mark said.

"Olivia," I tell her, "you stay away from the light!"

Thursday, August 12, 2010


Olivia had a night without apnea, so after going through a painfully long discharge summary, we secured her in her carseat and drove her HOME!!!

We brought her in and set the seat on the floor. Amore greeted each of us, her whole body wagging. Then, she noticed someone new. She sniffed gently, looking at us and looking back. We pet her and reassured her, then Olivia moved her foot and Amore started to bark. The front of her body was lowered onto the floor as her rear end wagged. It was as though she had never seen such an interesting chew toy before, but she'd take it!

Later, we all went to my parents house. In the hospital, Olivia could only have 4 visitors on her visitor list, so some people hadn't seen her yet. My brother, Nick, met us at the car to look at her, but said she was too small to hold. Inside, Olivia was greeted by Bailey, Buddy and Nora, my parent's dogs. Bailey lay next to me, staking her claim. Buddy's big, golden retriever nose inhaled Olivia in deep breaths. Like Amore, Nora had never seen such a thing- they took turns jumping up next to me for a sniff before running off to play.

My dad, who never did overcome his hospital-phobia, but came up with a bunch of lame excuses instead- 'No, can't go today- I need to shave. It's 90 degrees out. My grass is too long...' Even though we teased him about it- reminding him she was in a children's hospital and nobody would be looking for any reasons to keep him there- I know it was pretty hard on him. My dad absolutely loves babies.

"She's so small," he said, as I put her into his arms. He sat for the longest time, looking at her, taking her in, touching her hands, her face, her hair. "It's hard to believe."

"What?" I asked.

"After everything..." he said, "She's perfect."

Amy came over with her children. Coral had seen Olivia in the hospital, but her brothers hadn't. Terran, almost 4 years old, kept touching Olivia's hair and hands, "She's so soft." Phoenix, 7 years old, grinned from ear to ear, "She is so cute."

Olivia slept as she was gently passed from arms to arms to arms... kissed and sniffed and welcomed and loved- holding her is believing.

                                          Grandpa and Olivia

Our last night apart

Larissa spent the day with my mom, while Mark, Natalie, and I went to the apnea monitor class. We spent much of the day back and forth to the hospital- like most days- but at home I have been 'nesting'- cleaning the house, buying groceries, folding laundry,... The possibility of having my baby in my arms- without the drive, the parking, the elevator ride- has me so happy, so excited. Mark, on the other hand, grumbled about spending 'our last night together' picking up the house.

Wednesday, August 11, 2010

Closer to home

Tonight, my mom and I went to the hospital for Olivia's 8pm feeding. Her NG tube has been removed and she is being fed ad lib. She is taking 40-60ml about every 3 hours. Her weight is up to 4lbs 13oz. Her last apnea spell happened a few days ago while she was sleeping, two hours after a feeding. Olivia ate well for me tonight, then my mom and I took turns holding and cuddling her.

This morning, I spoke to a doctor about bringing Olivia home on an apnea monitor. I am familiar with apnea monitors. As a nursing assistant, I have helped care for babies that are on them. Olivia will be 37 weeks gestational age this Thursday, so the doctor said she will only need to be on one for a few weeks and only when she is asleep in her bassinet or riding in her carseat. Basically, whenever someone is not holding her or watching her. We have a class tomorrow to learn how to use the monitor and to learn infant CPR.

My mom and I left the hospital during a downpour- we ran laughing through the rain to the car. I always feel a tug in my heart when I leave the hospital, like I am leaving a part of myself behind. A part that I need. Soon, she will be coming home with me and our whole family will be together :)

Sunday, August 8, 2010

Apnea Spells

During the weekend, Olivia has had a few apnea spells with her feedings. This is just part of being premature and learning to eat (suck, swallow, breathe all at the same time). Overnight, she needed a little oxygen to recover during one of these spells, so she is not ready to come home yet. I would much rather have her be ready, than have a problem at home and need to bring her back. I asked about home apnea monitors and they prefer not to send her home on one. So, for now Olivia is still in the Special Care Nursery where she needs to be.

She is so beautiful. She is growing. Our family is so blessed. Thank you for all your thoughts and prayers.

                                       Natalie and Olivia

Friday, August 6, 2010

Carseat Test

Olivia was positioned and strapped into her carseat, then monitored for about an hour. She had no apnea or any other problems, so she PASSED her carseat test. She hasn't had any apnea spells since last Monday and the doctor told us if babies don't have any for 5 days it is felt they have matured enough to handle the multitasking involved with eating, swallowing, spitting up, breathing, etc. If she has another apnea spell, she will stay in the hospital a bit longer or have an apnea monitor at home.

She took all of her 38ml feeding this morning. Her weight is up to 4lbs 9oz. I hold her, wrapped in a receiving blanket I will take home to Amore. I leave these blankets on the sofa and let Amore find them. Soon, she is sniffing, arranging, or climbing under them for a little nap.

Larissa loves to help me give Olivia a bath- washing her, brushing her hair, dressing her in little clothes. This is our plan for the evening, after a little nap myself :)

Thursday, August 5, 2010


Olivia's feedings are up to 38ml. Tonight we are bringing her carseat to the hospital for her 'carseat test' tomorrow. Her weight is up to 4lbs 7oz. A nurse practitioner just called me-
if Olivia continues to take 28-38ml per feeding
AND she has no apnea spells
then, it is possible-
(drumroll, please) .......................................(cymbal crash)

(She wasn't screaming when she said that- I just heard it in caps:)

Wednesday, August 4, 2010

Olivia- Out of the Box

Since going to exclusive bottle feedings, Olivia has had a few apnea spells. Her nurse, Lanae, said we may have pushed her too fast, so today they gave her a break, giving some of her feedings through her NG tube and she had no apnea spells. When my mom and I went to feed her this evening, she took her entire feeding, then was awake for about an hour. We took turns holding her and she just looked around. At times, her eyes held mine and I felt like I was looking into the eyes of an old soul, timeless and wise. Not of this world, somehow... Then, her eyes went all cross-eyed and she started dancing to the rhythm of her hiccups. An old soul in a body, unfamiliar and new.

For weeks, Larissa has been asking when Olivia can come out of her "little box." Tonight, Linae raised the top on the isolette so she could monitor how Olivia would maintain her body temperature on her own. To help her, we would dress her in layers and bundle her up.

Linae had me put a long-sleeved undershirt on under the footed sleeper. The sleeves were twice as long as Olivia's arms and my mom tried to fold them over, so her hands could stick out. When I put the sleeper back on, I had to stuff her arms in and we laughed, because she looked like that little brother from the movie "A Christmas Story" after his mom zipped him into a snowsuit with his arms sticking out at 45 degree angles, unable to move. Olivia's arms were bent at the elbow and her little hands were in fists. The folded undershirt made her arms look huge and muscular, like Popeye. She just lay there, holding up her fists- like a double-dog-dare. We took her picture and laughed.

"She looks like a boxer." I said.

"Yeah, just like her parents." My mom said and we giggled some more.

We thought up captions for the pictures.
-"Hey, Natalie and Larissa, things are going to change around here."
-"I said I want Amore to sleep in MY bed and I mean it!"
-"So what if I'm only 4 pounds? You got a problem with that?"

A nurse came by, teasing, "Hey, I know you two are having fun over here, but if you wake up that baby sleeping over there." She pointed around the curtain to a bassinet on the other side of the room. "Well, you will have to get him back to sleep... and he is NPO."

Getting a baby to sleep who can't eat is difficult and heartbreaking, because the baby is trying desperately to communicate in the only way he knows how, but all he has is you- a moron who just doesn't seem to get it. Eventually, he wears himself out or gives up.

"Sorry," I whispered. Not the first time in our lives, nor the last. In our family, we laugh a lot.

Linae laughed with us at Olivia the Boxer. Then, we adjusted the sleeves, zipped her into a sleep sack, and swaddled her in receiving blankets, with her little face peeking out from under a little knit hat. All settled in and left in caring hands.

Sweet dreams, sweetheart...

Monday, August 2, 2010


This morning, Mark's mom picked up Natalie and Larissa for Vacation Bible School. Mark and I went to the hospital to feed and hold Olivia. Since my surgery, Mark has been doing most of the driving, but today I drove our Jeep. Mark sat in the passenger seat, pretending to hold on for dear life. He compared me to an addict who needed a fix. I had to laugh with him. I realize he will never experience what it is to be a mother. I miss Olivia so much. I ache to hold her. When she is in my arms, all is right with the world. Today, Olivia's weight is up to 4lbs 3oz. She was puttsy with her feeding. I touch her hands, her feet, her face. I can barely take my eyes off of her. We tuck her in to sleep. Olivia fix- check.

This afternoon, we met my mom at Dr. Laudi's office. I had labs drawn down the hall. As we waited in the waiting room, Dr. Laudi saw us and waved.

"Do you have the baby?" He asked, smiling.

"No, she is still in the hospital, but doing well." I said.

"Yeah," Mark added, "Her first word was 'arividerci.'" (Mark has a standing joke with Dr. Laudi- questioning how I could have possibly become pregnant with my ovaries shut down from Lupron. "Geez, guess you just have to walk into a room," Mark told him. Dr. Laudi is Italian and- thankfully- has a sense of humor).

Our nurse called us back into an exam room. She did my vitals, weight and went through my current meds. When Mark commented, "The only med she needs is named Olivia," she reminded us that she had been an OB nurse for many years. She agreed that moms NEED to be with their babies. She looked at each of us and repeated, "This is a NEED." She acknowledged the hormone fluctuations that occur during postpartum and after a hysterectomy. Since I have had no pain, I also realized I haven't been changing my Fentanyl patches on time and may have had some narcotic withdrawl on top of everything else.

Dr. Laudi loaded my current PET scan into his computer. Active areas light up, bright yellow. Some areas of the body always light up- brain, kidneys, heart, lungs- and this is not cancer activity. My PET scan from last Wednesday shows NO active areas. The masses in my left breast and the one under my left arm are GONE. The masses in every bone- ribs, pelvis, spine, etc.- are GONE and the bone is rebuilding. He put my scans from January on a split screen, so we could compare. The contrast was amazing.

Dr. Laudi said, "Just about one year ago, you were diagnosed with breast cancer. Just to think about this year... You have been through a lot. Now, you have a new baby daughter, who was determined to be here- determined her mother would be here with her. So much has happened. So many blessings. You are in remission."

Remission. The word is intoxicating.

Stage IV Breast Cancer is treated like any other chronic condition. There are meds and tests and doctor visits, but it doesn't have to occupy every thought, every waking moment. My cancer responded to treatment. Even though I have no active areas on the scan, it is possible that there is still a cancer cell wandering around somewhere inside me. Because of this, Dr. Laudi wants me to go back on Tamoxifen- which was clearly working, before I got pregnant.

Here is the plan:
-Tamoxifen, taken every day indefinitely (Even though my ovaries were removed, I still have other sources of estrogen in my body. Tamoxifen binds to cancer cells, blocking estrogen- their food source).
-Zometa every 3 months (to help my bones rebuild)
-Fentanyl patch- reduce dose and wean off. Then, use Vicodin prn.
-Appt with Dr. Laudi in 6 weeks
-PET scan in 1 year
-Olivia Joy 24/7
-Hugs and Kisses to Mark, Nan, Pickle and Amore
-Heartfelt Thanks (and joyful tears) to all of you- I cannot do it
without you
-Live, Love, Laugh... grateful for each moment...

Thursday, July 29, 2010


"Hope is faith
holding out its hand
in the dark."
-George Iles

Mark arranged for my mom to take me to the hospital to feed Olivia this morning. She picked me up. Once the car was in motion and reached 65mph, she asked me about yesterday. She reminded me that I had surgery and I was postpartum. She told me that I looked amazing, but I had been through a lot and she wants to help me. It is hard for me to acknowledge that I need help. She knows and told me she was coming over next week to help organize the house and get ready for Olivia coming home. She also wants to work out a schedule to drive me to the hospital or watch Nan and Larissa. She said 'NO HITTING.' She told me she loves me. I wiped my tears... Sometimes, when the world is spinning out of control, a person just needs their mom.

Sometimes, a mom just needs to hold her baby. Olivia's weight is up to 3lbs 15oz. Her nurse practitioner, Sheila, said she had an apneic spell during the night, but recovered with gentle stimulation. This is expected with a premature baby. Now, we will do all feedings by bottle every 3 hours. If Olivia wakes up and seems hungry, we can feed her ad lib. Her NG tube is still in, but not being used. Olivia's nurse, Amy, had a bottle prepared and I fed her. Sometimes, she eats quickly, but today she kept dozing off, so I had to keep waking her. My mom and I took turns holding her.

We stopped for lunch and talked and talked. Then, we picked up Nan, Larissa, and Amore to go to grandma's for a visit and a swim. I overheard Larissa say to my mom, "Grandma, we were going to go have fun, but mom was mad."
From my mom, I overheard bits and pieces, "Be kind to your mom and your dad.... Your mom had surgery... Did you see that big incision on her tummy? How do you think that feels?... Do you think she misses Olivia?... She loves you so much..." Empathy. We learn this from our mothers.

In the darkness,
light shines through.


This morning I had a PET scan to determine the status of my breast cancer. After an injection of a radioactive sugar I have to wait an hour for it to travel throughout my body. Since areas of increased activity require more energy/sugar, the scan will pick them up as active areas. Some areas are expected to be more active- lungs, for example. They ask me to try not to think, not to move. Elevator music plays. Try not thinking about anything- especially a new baby. It's nearly impossible. I hold my arms over my head. My body is scanned. After the scan, it takes about 24 hours for the radioactive material to clear my body, so I will not visit Olivia today. Mark knew that was going to be hard for me, so he thought it would be fun to take Natalie and Larissa on a short road trip to Duluth.

After weeks of sailing along on grateful winds, little by little my sails have become slack and empty. With my sense of direction suddenly beyond my reach, I drift along on waters, dark and turbulent. I am overwhelmed by a sadness I don't understand. A sadness out of sync with the obvious blessings in my life. I feel ungrateful and undeserving. My heart feels exposed and vulnerable. I am at the mercy of my emotions. My emotions are not merciful. Tears I cannot explain leak from my eyes and stream down my face. Not tears born of joy, of healing or of a heart touched and moved, but poison tears- existing only for themselves, unconnected and unconcerned. I become their vehicle. I feel sorry for myself. Annoying things- things I usually shrug off- move front and center. Minor irritations leap to fury and at times I am filled with a rage, both frightening and oddly exhilarating, as I ride the waves- lashing out at anyone who dares come near me.

I refused to go to Duluth. I yelled at Natalie and Larissa. For the first (and last) time in my life, I hit Mark. Shocked, he reacted and hit me back. Horrified at what we have become in an instant, he called people in his support system- his friend Corey- a priest, his brothers, Dr. Laudi, his mom, my mom. I escaped and went shopping. I let my calls go to voicemail. When I returned home, I went straight to bed and let the darkness cover me. What is done is done. I am left with regret. Things I said. Things I did. Things I didn't mean.

Call it the 'baby blues.'
Call it 'postpartum depression.'
Call it what you will- it feels like hell.

Monday, July 26, 2010


Last evening, Olivia took her entire feeding of 32ml in 10 minutes. She now gets one bottle feeding every 8 hours, with NG feedings in between. She weighs 3lbs 10oz. Taking a bottle is a lot of work for her. With a full tummy, she sleeps in my arms. We watch her sleep. Her eyes move around under her eyelids as she dreams. She smiles. Her hand reaches out. Her foot kicks. If I close my eyes, it's as though she never left me. Larissa sits nearby drawing and coloring. She is decorating the wall behind Olivia's isolette with pictures of sisters. Big sisters and little sisters and dog sisters.

Here are all the numbers, with all the blanks filled in.
Olivia Joy Landis
Born: July 8, 2010 at 3:17pm
Gestational age: 32 weeks
Weight: 3lbs 3oz
Length: 16 inches

Yesterday, I was paging through the Sunday paper and came across the Horoscopes. Curious, I scanned the dates looking for July 8. Get this- Olivia's astrological sign is... Cancer.

There it is again. Cancer. From the beginning, I chose to view cancer, not through a lens of negativity, but to be open and accept cancer as a teacher. Cancer has stripped me of things false and impermanent. Cancer has driven me deeper. By choosing to not give up, but to let go- it's as though the stars are free to align. A thought, a prayer has power. Angels are revealed. Evidence of a Higher Power- of God- in the bathroom mirror, in every face, every flower, every rock, every butterfly,... everywhere. In this state of surrender, cancer comes bearing gifts...

"A great teacher is not the one who supplies the most facts,
but the one in whose presence we become different people."
-Ralph Waldo Emerson

Friday, July 23, 2010

Wishing and Hoping and Missing...

Olivia is bottled twice a day. This morning, she took 20ml of her 30ml feeding. It doesn't seem like much when you consider only one ounce, but she is growing. Today, her weight is 3 pounds 9 ounces. Larissa and I gave her a bath in a 'little blue bathtub' and Olivia did not cry at all. To her, it must have felt like home.

I miss her. Children's Hospital is miles from our home. I asked about transferring her to a closer hospital, but Children's is considered the best place for her to be, so I accept the miles. Next week, Olivia will have a 'carseat test' where she will be positioned and strapped into a carseat for 30 minutes. Premature babies don't have the fat around their necks that keep their heads from toppling forward in ways that obstruct their airways. This test shows if she can maintain positioning for the average length of time to ride home from the hospital. I am not sure if she will need any monitoring machines when she comes home, because she isn't having breathing problems.

Even though I just had a C-section and a hysterectomy 2 weeks ago, I actually feel really good. My incision is healing. I am taking care of myself- eating and taking naps. Larissa and I are taking short walks with Amore. We took Larissa to see "Toy Story 3" this week while Nan was at Horse Camp. That was fun! Today, we picked Nan up from camp.  She told us she had been bucked off her horse, but wasn't hurt. Nan said she had a good time, but felt homesick at times and of all the members of our family, Nan singled out one she missed the most.  She said, "I really miss Amore."

This reminds me of a story my mom told me about my sister, Amy. When Amy was in first grade, she came home from school and handed our mother a school assignment. There was construction paper folded in half over a lined sheet of paper. On the cover, Amy had printed the words, "The person I admire most." Around these words there were carefully drawn pictures of a sunshine and flowers and birds. My mom said she felt very touched- at the thought of being a person so admired. With tears in her eyes, she opened to the inner page and, in Amy's best handwriting, our mother read, "The person I admire most is my dog."

A dog is at the heart of many families :) I know this is true of mine.

"Dogs don't lie, and why should I?
Strangers come, they growl and bark.
They know their loved ones in the dark.
Now let me, by night or day,
be just as full of truth as they."
Garrison Keillor

Tuesday, July 20, 2010

Baby steps

Natalie is at Horse Camp with her Girl Scout Troop for a week. She has been preoccupied with packing and planning and anticipating. We can't wait to hear about her adventures and what it was like for her to care for a horse. Her cousin, Coral, is with her and they are sharing bunk beds.

We have been visiting Olivia in Special Care Nursery at least twice a day. The babies in this nursery are the 'feeders and growers.' Olivia's time is spent sleeping, getting feedings through her NG tube, being assessed by nurses and doctors, and being held by her family. Yesterday, Larissa and I gave Olivia a bath. We washed her with washcloths. Larissa wanted to put her in 'a little blue baby tub' like we have at home.

Olivia's feedings through her NG tube are increasing in volume every day. This evening, we gave her first bottle feeding! Her nurse gave us tips for keeping Olivia focused, in case she dozed off once she topped off her tummy. Usually, babies are given 30 minutes to finish their feedings, but her nurse felt 20 minutes was a good place to stop for her first one. Olivia was interested and she took 18ml of her 28ml feeding in 20 minutes. The rest of the feeding was put in her NG tube.

Feeding and growing and sleeping and snuggling... little steps closer to home.

Wednesday, July 14, 2010

Sister Love

This morning (well before 'quiet time'), we went to the hospital to see Olivia. Due to space, we don't stay long when we have Natalie and Larissa with us.

Larissa kept saying "I just want to squeeze her." I am hoping she meant 'hug.' We talked about gentle hands and arms. Larissa is not used to being all that gentle, with sisters anyway. Natalie is pinched on a regular basis. Sometimes, Larissa puts Amore into our laundry basket that has wheels and gives her rides through the house. Amore doesn't seem to mind.

Olivia was born one week ago. Today, she is up to 18ml per feeding through her NG tube. She is still getting TPN/Lipids (IV nutrition) through the IV in her foot. Our nurse said, once these current bags are empty, they are planning on discontinuing the TPN/Lipids altogether and taking out her IV. Olivia is interested in sucking on the milky Q-tips and a pacifier, so soon we will be able to start feeding her with a bottle. Once she is eating enough to grow, she can go home.

I have a bassinet set up next to our bed. A bouncy seat and swing are ready. I have washed blankets and preemie gowns in Dreft. Amore has claimed them all, even a stuffed animal that I hid between the mattress and the headboard. I held this stuffed animal as I slept, then I brought it to the hospital to leave with Olivia, so she would smell her mother (and probably Amore) nearby. I will start bringing receiving blankets to the hospital to wrap around the baby. I will bring them home to Amore, so when Olivia comes home, her smell will be familiar.

I remember bringing Larissa over to my parent's house for the first time. She slept in her carseat, as we brought her inside. We didn't draw any attention to her, setting the seat on the floor and sitting nearby. Soon, the dogs and cats were sniffing. 'What's that?' They looked at us, 'Look what we found!' They were curious and interested, ever so sweet and gentle. This smell was familiar. If the baby moved, they were surprised and would back off. I pet them as I held her, inviting them closer. They would look at her and sniff, maybe give her a kiss. The baby was accepted as one of us. When we would leave, we often found a cat napping in her carseat or snuggled in her blankets.

We always introduce new babies in this way to the animal members of our families. Every baby is welcomed by a wet nose, a purr, a sniff, a wagging tail, a song,...
and, if Larissa has her way, a ride next to Amore in the laundry basket :)

Larissa and her cousin, Terran, and Amore.

Special Care Nursery

Because Olivia is doing so well she no longer needs to be in the NICU, so she was transferred to Special Care Nursery at Abbott. Her weight is still stable and she is getting 10ml per feeding.

When we initially had our pre-admission tour of the hospital, we were taken to both of these units. The NICU at Children's is brand new with private rooms and a designated place for parents. SCN at Abbott is set up like a ward with 3-4 babies per room and no place for parents to stay. When we went there today, we arrived around 2pm with Natalie and Larissa. We were told that the babies have 'quiet time' from 2-4pm and due to space they need to limit visitors. It feels different, more 'old school' in a way. The contrast is so dramatic that Mark actually requested that Olivia be sent to the NICU at birth- not really understanding that babies are sent to a particular nursery based on the level of care they need. (Well, he probably understood, but just liked the NICU setup better). Regardless, it is a positive step that she has moved to SCN. Aesthetics should not really matter. Remember, Mark's great-grandmother was sleeping in a shoebox next to the fireplace.

Olivia's doctor said the only reason she is still in the hospital is because she needs to learn to eat on her own. He estimated this could take 2-3 weeks. We are truly blessed.

After dinner, we are heading back to see her.   

Tuesday, July 13, 2010

Quick Entry:

Olivia's weight remains stable. Breathing well. Feedings are up to 9ml per feeding. 

Home minus One

                                  Grandma Ireane and Olivia

I got my 19 staples removed and steristrips applied over my incision. Then, I was discharged to home.

Mark and I walked over to see Olivia, then we headed to my parent's house to get Amore. My mom and I made plans to go to the hospital together this evening. My dad is working on his hospital phobia and will hopefully overcome it soon. Mark's mom has Nan and Pickle up at a lake and they will be returning tonight. We snuggled up with our sweet, little dog and took a nap.

At around 7pm, my mom, Amy, Coral and I went to the hospital together. Our nurse, Amy, said that they had recently removed Olivia's umbilical line and put a new peripheral IV in her foot. She has TPN/ Lipids running into this IV (this is a type of nutrition). IV starts are stressful and Olivia was now asleep, so she suggested that we wait to hold her until her 8pm cares. Our nurse turned off the bili-lights and removed the little mask covering Olivia's eyes so we could look at her face for a few minutes, then she covered her eyes and turned the lights back on. We just sat and stared at the baby. Every time she moved or stretched- we oohed and ahhhed like we were at a spectacular fireworks display. We were mesmerized.

At 8pm, our nurse, Amy, had me take Olivia's temperature under her arm and change her diaper. As she prepared to let me hold her, Mark, his mom, Nan and Larissa arrived. Our nurse asked that we keep the number of people in the room to 4 when the baby was out, so Mark took all the kids to McDonald's for ice cream cones. Our nurse got Olivia's feeding ready- she is getting 8 ml per feeding. She put a little of the milk into a syringe and gave me a sterile Q-tip. I squirt a bit of the milk onto the cotton and put it in Olivia's mouth. She opened her eyes and sucked. We gathered around. As her tummy filled up, she settled back to sleep. We watched each moment, each movement as if we had never seen such a thing in our lives before. Ireane said if everyone had a baby to watch- nobody would need a TV.

Our nurse made sure we were settled, then she closed the curtain to the hallway as she went to check on her other patient. I rocked Olivia- gently touching her face and hands. Every now and then, Olivia would open her eyes and look around. Everyone was gathered around me. I stood up and I passed Olivia to my mother... who passed her to my sister... Olivia started to cry as Amy held her- I told Amy to stop pinching her. Her cry sounds like a little kitten meowing. Amy gave her back to me and when Olivia settled, I put her in Ireane's arms. My mom said she is happy to see that I learned to share :) Ireane told us a story about her grandmother who was born prematurely- before hospitals, NICUs, or any of this fancy equipment. They put her in a shoe box, by the fireplace and fed her milk laced with mashed potatoes and a bit of whiskey. She lived into her 90s.

As each of us held her and rocked her, again we talked about how amazed we are. Today, her weight is stable. Her respiratory status is stable and she is on room air. She occasionally needs BlowBy oxygen when she is stressed- like when they put the IV in her foot. She is breathing well. They are feeding her donated breast milk. (Thank you, breast milk donors!) This feels bittersweet to me, because I have always breast fed my babies and I wish I could now... At 35 weeks gestation, babies develop the ability to eat on their own. There is a lot for them to coordinate and learn- sucking, swallowing, breathing. This takes time. Natalie was born 4 weeks early and needed help with feedings, too. Nurses were watching for signs of narcotic withdrawl that was expected to show up 24 hours after birth- Olivia shows no signs of withdrawl at all.

"There are only two ways to live your life.
One is though nothing is a miracle.
The other is though everything is a miracle."
-Albert Einstein

Monday, July 12, 2010

Olivia Joy

My Hgb was 9.1 this morning. I thought I might get to go home- was actually advocating for my own discharge- but the doctor wanted me to stay and recheck my labs in the morning.

Twice today, I walked over to Children's to see Olivia. I learned that her length at birth was 16 inches. A ruler plus 4. I think I have had dolls that were bigger. She has lost some weight, as most babies do for a few days, so today she is just over 3 pounds. I don't know what to compare that with- a small bag of sugar is 5 pounds. I just know she feels like a feather. Her bilirubin is edging up-also common- so she is under bili-lights to help her clear it.

I got to hold her for an hour this evening. As she grows, I will get to hold her for longer periods of time. For now, she still needs time to finish up the growing she would have done inside of me, so the NICU tries to mimic that warm, calm, secure environment while minimizing disruptions and stress. Stress is work- it costs energy. The energy needed to grow. It's like having a window into those final weeks of a pregnancy... and a door. I am still part of it, but in a different way. Not better. Not worse. Just different. She needs this time. It is her time. I will not rush her, will not intrude. I will quietly, gently let her know I am here- she is not alone.

As I hold her, she opens her eyes and looks at me... I wonder if she knows how unlikely- her very existence, me sitting here holding her. I wonder if she can feel how precious she is to me. Tests, drugs, radiation, chemo, fear, doubt- things I would not wish on anyone. This tiny girl braved them with me. Her hand reaches out and she wraps her entire hand around one joint on one of my fingers. I am wise not to judge her based on her size. The hope she gave me is bigger- more vast- than anything I can imagine. From out of nowhere, this tiny, tiny girl jumped right into the middle of my life... and she saved me.

Saturday, July 10, 2010

In my arms

My Hgb was 6.8 this morning, so my doctor ordered 2 units of blood. My mom and Amy brought me lunch from Noodles and Co. right before the first unit went up. I showed them my incision and staples before we ate (it's just a nurse thing).

My nurse knew how much I wanted to go visit Olivia, so when she was flushing the first unit through the tubing, she set the pump for a couple of hours and I climbed into a wheelchair and we headed to Children's NICU. My nurse asked me to push the wheelchair and walk part of the way, but I decided to do it on the way back because that floor in the tunnel runs uphill from Abbott to Children's and downhill from Children's to Abbott. I let my mom push me on the way there. Yes, she noticed the uphill part.

When we got to the NICU, our nurse, Kim, was on break, and another nurse, Linda, was caring for Olivia. We washed our hands, opened the small doors on the isolette, and reached in to touch her. Linda explained the most comforting way to touch a premature baby is to just lay your hands on her, letting her feel that you are there, but not causing overstimulation to her sensitive skin. We were told, babies Olivia's age sleep about 22 hours a day and are only awake for short 6 minute intervals at a time. Linda told us that Olivia is doing well. She is breathing room air now, only occasionally needing BlowBy O2. She has a feeding tube in her nose that goes into her stomach and she is being fed every 3 hours. We surrounded the isolette, each of us laying our hands on Olivia... resisting the irresistable urge to run our fingers across her face or hair or arms... each of us lost in a sense of awe.

Linda stepped back into the room and asked me, "Would you like to hold her?"

"Yes." My mom and sister helped position my wheelchair- happy tears dripping here and there. Linda reached into the side of the isolette, arranging tubes and monitor cords, speaking softly to Olivia. With skilled hands, Linda gathered up this tiny baby and put her into my arms. Olivia is so small, so light, so beautiful. Linda gave me tips for holding her, then she turned down the lights. When Olivia heard my voice, she opened her eyes.

Mark, Natalie and Larissa walked in and peered into the empty isolette, then realized I was holding Olivia. After everyone washed their hands and got to touch her, Linda tucked her back into her little nest and we walked back over to Abbott together.

Nan and Larissa shared all the things they have been doing with Grandma Ireane and Uncle Steve- swimming, garage sales, church. As promised, I did push the wheelchair through the tunnel- downhill. Now, a dose of Lasix, a trip or two to the bathroom and another unit of blood. Then, maybe a nap:)

Friday, July 9, 2010

ICU Mom/ NICU Baby Girl

I am out of the ICU and back on 6th floor at Abbott, Room 6504. My Hgb is 7.4, but I am not symptomatic, so they believe my blood is dilute due to all the fluids I got during surgery. My pain level is down to a 2 on a 0-10 scale. I am doing well.

Olivia had the breathing tube removed early this afternoon. She is breathing well on her own. I am hoping to get to see her soon. I can't wait!!!

Thank you for all your thoughts and prayers. You mean so much to me. I will have Mark post some pictures soon...

"Sometimes," said Pooh, "the smallest things take up the most room in your heart."

Baby Joy

Though I am trying to get this journal caught up (I promise I will- I have all my notes) as you can see my last entry is dated mid-February, but in real-time it is July 8th. For now, I need to flash forward to today. Please sit down. You might want to buckle up.

I got up early this morning, planning to clean out the storage closet under the stairs and clean the house and wash clothes, because Mark's brother, Steve, is in town from Chicago and was planning on coming over tonight. I took a bath and was sitting on the edge of the bed, when I noticed that I was bleeding. I called Mark who was on his way home from a cab run. Mark called his mom, then called my mom who called my sister, Amy, and we all headed to Abbott Northwestern Hospital in Minneapolis.

I had labs drawn and 2 peripheral IVs started. I was hooked up to monitors. A test determined that there was amniotic fluid mixed in with the blood. The OB doctor wanted to monitor the bleeding and start planning for delivery- within the next day or two. Because the baby is only 32 weeks gestation, they had hoped to give me 3 steroid injections, 24 hours apart, prior to our planned delivery to help the baby's lungs. She wasn't sure how many shots we would get in, but I got the first one. Mark's mom picked up Natalie and Larissa at the hospital and brought them to her house. My mom and Amy arrived.

We moved to a labor room, though I didn't feel like I was in labor. I had known for some time that I would be having a c-section delivery, not only due to the state of my bones, but because the placenta had attached over the cervix. The OB doctor spoke with an oncologist, covering for Dr. Laudi while he is on vacation, and the GYN-Oncologist that would remove my ovaries after delivery. They explained everything to me and I signed consents. My mom and Amy rubbed my arms and feet and kissed me. Mark cleaned the camera lens and changed into scrubs. At around 2:30pm, I was wheeled into surgery to start an epidural and have the baby.

From the initial incision, we were told it only takes about 10 minutes for a baby to be born by c-section. I will fill in the exact time later- for now just do a little math and you will be in the ballpark. The baby weighs about 3 lbs 3 oz and is about "a shoe and a half long" per Mark. Not one of us know all the measurements (we have attentive nurses and doctors to keep track of the numbers)- right now, we simply don't care about such things. All we care about is that our little daughter arrived safe and sound.

Welcome to the world, welcome to your family, Olivia Joy.

Mark and I both liked the name Olivia. (My mom thanked us for naming our daughter after her fluffy cat). I chose Joy- my middle name and our niece, Coral's, middle name. When I look at Olivia, I can't help feeling that, in this life, Joy chose me.

She has soft, fuzzy hair that looks like mine. I can see traces of both Natalie and Larissa in her tiny face. Erin, our nurse, held her close to me so I could kiss her. She is absolutely beautiful.

Olivia had an umbilical line put in, so she could get IV fluids and meds and have labs drawn. Her heart rate and oxygen saturation is monitored. She is premature and was working hard to breathe, so she was taken to the NICU at Children's Hospital where she had a breathing tube placed. Mark went with her.

I had gotten my 6 rounds of AC chemo as planned, then Dr. Laudi had added a 7th round in hopes of buying us a few more weeks before we delivered the baby. I got my 7th round of chemo on June 28th, so today I was 10 days out, but my blood counts and and platelet levels looked good for surgery. My ovaries were removed as planned, but the surgeon could not get my uterus to stop oozing blood. After an hour or so of trying, she decided to remove my uterus, too. (Sorry, Michele, they had already knocked me out, so I couldn't work out that 2-for-1 deal you were hoping for). I got a unit of blood. (Thank you, blood donors!) I woke up in recovery in a lot of pain. My nurse kept the IV pain meds coming, but it is hard to get on top of it. I was transferred to the ICU overnight.

Last night, I had a dream that I was holding my baby.

Tonight, Olivia sleeps... down the hall, down the elevator, through the tunnel, up the elevator, through the door, the twists and turns, under the watchful eyes and in the caring hands of nurses...

As Olivia sleeps,
I will think of her, as I have for months.
I will whisper these words, as I have for months.
I learned as a child,
hopeful and wise,
inspired by empathy,
true to my heart,
spoken by an elephant-

"A person's a person, no matter how small."
-Dr. Seuss

Friday, April 2, 2010

Flashback: April 1, 2010. OB appt

I am 18 weeks pregnant.  I am the bald, pregnant, 29 year old woman with breast cancer sitting in the waiting room of the OB clinic, with other pregnant women, waiting for my appointment- wondering if someone somewhere is crouched in a corner, behind a potted plant, getting ready spring up and yell in my direction, "April Fools!" 

Today, I learned:
My baby is growing. 
All the mind-boggling mathematical equations,
all the comparing and contrasting,
all the risk assessments
in my particular case
at this particular point in time
have all been concluded
and can be summed up by a 4 word statement.
A statement lacking scientific substance,
but floating on helium,
and shining with a candle's flame of hope-

"We don't really know." 

I laughed when they said that.
I couldn't stop smiling.
Faith weighs more than science.
It always has.
I am told a mother's body is a miraculous thing,
protecting and nurturing a baby,
even at a mother's own expense...

Hold tight, Little One.
Take what you need-
it's yours,
I'm yours.
I am here for you.

Wednesday, March 31, 2010

Flashback: March 31, 2010: Gimme a Head with Hair

There is a Cancer Resource Center on the same floor as Dr. Laudi's office and the infusion center.  Since it is run by volunteers, it is not always open.   Mark has checked it out himself before when I have been waiting for labs or chemo.  Today, after visiting the clinic, Mark noticed it was open, so he, my mom and I stopped in.

The door opens into a room with a fireplace and comfortable sofa facing it. There is a table surrounded by chairs.  Books and brochures fill the shelves that line the walls.  Off to the left is smaller, closet-sized room filled with drawers and baskets filled with wigs.  A volunteer had encouraged Mark to have me take a look, because they offer one wig to each cancer patient free of charge. 

My sisters and I have grown out our hair before and donated it to Locks of Love, an organization that collects hair and makes it into wigs for people who have lost their hair. I am curious to look at the wigs.  I don't know if I really want a wig.  I don't need one.  My Aunt Connie said her wig was itchy and hot and she was always self-conscious about people staring at her.  She imagined people whispering to each other about it as she passed by.  She said she once left a grocery store in a panic, because she felt she was on display- eyes burning holes through her, inspecting her fake hair, judging her because of the obvious fakeness of her hair.

My head is bald.  It is what it is.  No more.  No less.  I actually forget about it at times.  I feel acceptance, even a sense of freedom.  My self worth is simply not bound to hair- probably to the disbelief and horror of my culture.

The reactions I see in others is an interesting study of human behavior.  When faced with a bald woman, do you:
-stare with curiosity?
-stare with disgust?
-stare as if you aren't staring?
-wonder if she has cancer? 
-look away and ignore her?
-think she is attention-seeking?
-wonder if she is part of a cult?
-feel at a loss for words, but find a way to show her you see her and care?
-stop your child from asking her about her hair?
-or do you just ask her about it?

What do I do when I see a bald woman? 

The volunteer asked me about my hair color and previous hairstyle. She pointed out a section of wigs that were similar to my own hair, then she left us alone so I could try then on. There were drawers and drawers filled with wigs, each in its own ziplock bag. There was a large mirror to look in. We started pulling out the wigs, comparing them to my old hair, trying to match it, but why should I let my DNA dictate the color of my hair now? I am bald. I am a blank slate. Soon, we were all venturing away from my usual brunette, shoulder-length bobbed hairstyle.

We took a hair adventure.....

You can imagine Mark's comments-
"just need some high heels and a street corner." 
(looks like I already have the wardrobe malfunction going on)
"And now for the 5 o'clock news.  For our first story..."
I had trouble stretching this wig around my head.
When I let go of the back to secure it in the front,
it slipped from my fingers 
and sailed through the air like a rubber band-
giving it a tossled look. 
Mrs. Claus
 or Mark said, "Oh, Mom!"
I think there's still a rat in this nest.

Our laughter filled the wig closet and spilled out into the adjoining room. The volunteer returned smiling. She asked if I had found one I liked, but I wasn't sure. She said she had another wig back in her office- a story wig, she called it- and she wondered if I would like to try it on.

"Can we hear the story?" we asked.

She told us a woman had purchased the wig for her daughter, but her daughter had died before she could ever wear it. So the mother donated the wig and asked that it be given to a young woman with cancer. I said I would like to try it on, so she went to get it. We were putting the wigs back in their respective bags and drawers when she returned and handed me the wig. I put this wig on carefully, with reverence. This wig was not just some fake hair. It had been intended for someone
The Story Wig

"What do you think?" She asked me as I looked at myself in the mirror.
I shook my head, "I don't know."

"Well, I can put this one back in my office and you can let us know what you decide."
It's a surprisingly hard decision.  To me, a wig is not something to hide beneath or replace something I have lost or pretend I am someone I am not. I am very clear about what a wig is not.  I just don't know what a wig is... to me.  
On another day, I tried this wig on
 while I waited.
Then, I tried the Story Wig on again.

Something in me was drawn to this wig,
or more likely,
to the story of this wig.

While the volunteer fussed with the strands of hair,

I decided to give this wig a home.
And that's what I did...

Monday, March 15, 2010

Flashback: March 15, 2010. Chemo Comedy Scene 2

My second trip to the clinic infusion center for chemo.  YeeHaw!

Hey, did you hear the one about the bald, pregnant woman getting chemo for breast cancer?   Me either.  People don't seem to joke around about such things. 

This reminds me of a story:  My mom went to the University of Minnesota to get her Nursing Degree.  As one of her electives, she chose the class "Acting for Non-Theatre Majors."  Why did she choose that class I asked her? 

"Because it scared the shit out of me," she said. 

A major portion of her grade was based on her lip-synching performance to a song of her choice.  On that particular morning, she frantically searched through her class catalog to see if it was too late to drop the class without taking a failing grade- it was too late and she was stuck between an F and a hard place.  With courage and a positive attitude- she did it and she ended up getting an A in the class.  She still says this class should be a college requirement.  I don't think she means the acting part itself.  I think the experience that "scared the shit" out of her and terrified her so much she wanted to bail out, actually forced her to dig deep.  This was the real lesson- the buried treasure- of this class.  The courage and positive attitude it took to get to the other side was not created by the experience, but was always inside of her just waiting for her to find it. 

Today, I was thinking about one of her earlier assignments for that class.  She was randomly paired up with another Acting-For-Non-Theatre-Majors Student.  My mom, a thirty-something, married, mother of four was paired up with a guy who already had a college degree, but was taking the class hoping to potentially tap into a new dating pool.  Too bad for him.  Each pair in the class was given the exact same script.  The assignment was for each pair to use this script to create both a tragedy and a comedy. 

My mom's partner was into the tragedy.  He thought up scenerios that all had a similar theme: They were playing a couple.  He was breaking up with her.  She was devastated, desperate, begging him to stay.  My mom patiently listened to the variations- sometimes they were horny high school sweethearts, sometimes professionals dating exclusively for years, sometimes married with children,...  My mom told him this would be a huge test of her acting ability, because in real life she would just caution the guy not to let the door hit him in the ass on the way out.  She laughed.  He didn't get it.  They had to meet outside of class to work on this project.  He wanted to meet in restaurants or bars, but she put the kabosh on that.  He admitted he wasn't really concerned about his grade- he was taking the class pass/fail and it showed.  She ended up writing both scenes.

The pairs acted out their scenes for the entire class to see.  My mom shares this story, because she said it was amazing to see the same script played out in so many different, creative, surprising ways. 

I was thinking about that today.  I think about that a lot.

Cancer handed me a script with tragedy written all over it.  But then again...cancer handed the script to me- a bald, pregnant woman getting chemo for breast cancer- a woman who loves a comedy....

Sunday, March 14, 2010

Flashback: March 13, 2010: False Alarm!

The experienced Ortho doctor said the condition of my bones is concerning, but he did not recommend surgery at this time.   I was discharged from the hospital today without having a Total Hip Replacement.  I will continue my treatment as planned. 

Whew, dodged that bullet!

Friday, March 12, 2010

Flashback: March 12, 2012: Orthopedic Conference

Mark and I went to the University of Minnesota Hospital for an ortho consult.  To my surprise, I was admitted to the hospital on the spot.  The surgeons are unsure of how to proceed, so they are consulting ortho specialists far and wide.  I am on complete bedrest.  They are bouncing around words like "total hip replacement," so they have our attention. 

My awesome sister, Amy, took over our parenting duties- picking up Amore from our house and Natalie and Larissa after school, feeding them and caring for them.  I don't worry at all when they are with her, which allows Mark and I to focus on the decisions at hand.

To spare you the suspense:  I AM NOT having a Total Hip Replacement.  I WILL NOT sign a consent for one. 

Mark asked a million questions.  He asked for doctor's opinions and about their level of experience.  He learned that many of the experienced Ortho Specialists are currently out of town attending a Ortho Conference.  Mark told them we will wait until they return to decide.  

Thursday, March 11, 2010

Flashback: March 11, 2010: Bones

I have horrible left hip pain.  Mark called Dr. Laudi who ordered an Xray. 

Results: Bony disease is worse. 
              I have possible fractures in my pelvis and the head of my left femur is 70-80% tumor. 

Cancer cells infiltrated and displaced my bones.  The chemo is killing the cancer cells.  Now, there are  holes in my bones where the cancer cells used to be, so my bones are fragile.  Dr. Laudi is concerned about fractures, so I have an Ortho consult tomorrow.

Monday, March 8, 2010

Flashback: March 8, 2010 zzzzzz zzz Buzz Cut zzzzzz

Natalie's 10th birthday is on March 6, so Mark surprised her by taking her for her first airplane trip to  Chicago to visit her uncle, Steve, Aunt Laura, and cousin, Nicole.   The house is quiet without them, though we call each other throughout the day and Mark sends pictures so I can see what they are up to.  Larissa, Amore and I are hanging out at home, making popcorn and watching movies. 

I had labs drawn on the 5th, Dr. Laudi said my tumor markers have dropped into the 50s.  The chemo is doing its job.
My hair is falling out.  I wake up with hair on my pillow, hair in my eyes, hair up my nose.  It tickles and makes me feel so itchy it's driving me crazy.  I have balding spots and thin spots and thick spots.  I remember my great- aunt Connie describing her hair loss after chemo. 

She always laughs and says, "I looked just like the Crypt-keeper on that old TV show."  

Good grief!!!   The really scary thing is.... I know how she felt.

My mom, Amy and Terran planned to come over today to help clean the house and catch up our laundry.  I called Amy before they left and asked her to grab the dog clippers.  I know hair is a huge deal to many people- it's usually the first side effect oncologists and nurses prepare you for- but it's not a big deal to me.   At least, I don't think it is.  It's just hair.  Hair isn't me. 

Larissa and Terran played as we cleaned.  The clippers sat in their case on the kitchen island until the dishes and vacumning were done and the clothes folded and put away.   Then, we were ready...

I know from the outside, it doesn't really look like it

but it does feel like the crypt-keeper from the inside.

Now I know how the dogs feel.

It is kind-of funny

and surreal

and shocking

and hilarious

and Amy says everyone should have a mohawk at least once. 

It also feels kind-of ...
a loss.... 

I will keep this hair until Spring,
then leave it outside
as a gift to mother birds
building their nests.
Always honest, Larissa said, "I don't like it."
Amore stood on my offending boob,
squashing it into submission.

Then, with the simple wisdom and grace of a dog,
Amore showed me what I already knew.         
Hair is not me.  I am still me.  

Cancer and chemo can take many things,
but they can't take love :)