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