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...