Remembered

Dear Baby Allegra:

You were born 6 months ago today.

I held a friend's baby girl recently. She was wiggly, heavy and healthy. Unlike you. Thank you for staying in your uncomfortable body for those long, quiet weeks together.

Luckily, I held you for your first breath and your last.

Love,
Your Mom

Discussed

While riding in the car Klein asked, "I'm gonna die. Later. And I'm gonna see Baby Wegwa in heaven?"

"Yes," I said.

Klein thoughtfully replied, "Oh. That's cool."

Mourned

   


Dear Baby Allegra:

Hearing is supposed to be the last sense to fade when a person dies.

I wonder what your one perfect ear heard last. Was it the birds chirping as we sat outside? My voice waking Mitch to tell him you're gone? The sobs of your parents as we bent over you? Maybe it was the sound of water splashing as I bathed your limp body? Or did you hear Cairo crying and Levi offering you his blanket?

I hope it was the "I love you" whispered as I laid your body inside that massive hearse.

I miss you.

Love,
Your Mom

Considered

We chose hospice care for Allegra because any medical procedure performed could only delay her death instead of preserve her life.  Noxie, our gentle hospice nurse, helped us keep Allegra comfortable as we loved her at home.

At some point you may need to know about hospice care for you or a loved one. Although I haven't watched it yet, I've read this show is a great way to initiate dialogue on end-of-life care...

"Consider the Conversation: A documentary on a taboo subject" 

You can check http://www.considertheconversation.org/ to determine if this documentary is scheduled for your local PBS station.

Our friend Loretta, a hospice advocate, is interviewed in it.

Remembered

May 20, 2011: A first photo

June 17, 2011: The last photo

Cultivated

I love walking past our dining room table to see the family photos and stack of cards offering congratulations, support and sympathy.  Despite my current need for visual reminders of our time with Baby Allegra, one day soon I'll put these things out of sight.

Lucky us though because a few families on our kids' swimteam thoughtfully registered a newly cultivated pink rose with the name "Baby Allegra" thereby "allowing everyone to honor and remember the beautiful spirit of a precious girl."  Come spring we'll have this rose plus other special plants blooming in time to remind us of her.

If you would like to grow Baby Allegra roses in your yard, you can order from here in Spring 2012.

Moved

May 20, 2011 around 5 a.m.

Remembered

Dear Baby Allegra:

You've been gone 5 weeks.

Your adoring siblings always begged and argued to be the next person to hold you. For most of your life, I was that lucky person. Do you remember the feel of my arms like I remember the feel of yours?

Love,
Your Mom

Understood

A phantom limb is the sensation of feeling, sometimes painfully, the presence of a missing limb.

The last month was spent mentally readjusting to life without Baby Allegra. There is no longer a pressure to quickly return when I leave the house. No little bundle is waiting when I walk out of the bathroom. She's not sharing my pillow when I wake in the morning. And there is no weight on my lap as I write. Despite this month-old reality, I still find myself expecting her to be just out of sight.  Not gone.

Although phantom limbs cannot be removed, the associated pain is usually intermittent and is supposed to decrease over time.

Mourned

Dear Baby Allegra:

You've been gone 29 days.

Thankfully, you also lived 29 days.  In that time, you were in the hospital only 6 hours.  You spent 92 hours on oxygen. You ate less than an ounce at every feeding.  You were held by countless people and kissed infinite times. You had 6 blankets, 5 feeding syringes, 4 onesies, 3 car rides, 2 preemie pacifiers, yet only 1 known outcome.

I miss you.  So do the 5 other people in your family.

Love,

Your Mom

Soothed

A few nights ago, the boys and I visited Baby Allegra's grave.  As we left Cameron called out, "Good night Baby Allegra.  Don't let the bed bugs bite!  Have sweet dreams!"  

The same thing he says to Mitch and I every night as we tuck him into bed.

Mourned

Dear Baby Allegra:

You died 3 weeks ago today.

I prayed you away.  I loved you and wanted you, but watching you suffer was unbearable.

Now I miss you.

Love,
Your Mom

Mourned

When we met

Dear Baby Allegra:

You died 2 weeks ago today.

You were so little and our time together so short.  So why is this hole inside me so big?

Love,
Your Mom

Dressed

This dress hung in our closet for months.  Haunting us.  It is Baby Allegra's burial gown.  The gown was handsewn by my mother who later confessed sewing it was the hardest thing she's ever done.  It is made from fabric left over from my similarly-styled wedding dress.  The pink flower over the heart is actually six smaller flowers I made to represent each member of our family.  Cairo and I wore larger versions of this flower to her funeral.

Last week we went to the funeral home to see Baby Allegra for the last time.  She neither looked nor smelled as I remembered her, but I needed to hold and dress her once more.  When I laid the gown next to Baby Allegra, Mitch quietly commented, "Damn that gown.  It sat in our closet for so long, reminding us of the inevitable."

Mitch and I removed her pink tee and gently rubbed Baby Allegra with the pink lotion that makes my babies smell like mine.  We dressed her in the gown and snugly wrapped her in a soft, fuzzy blanket.  But no matter how tightly I held Baby Allegra, her little round nose remained cold as it pressed against my chest.

After holding her almost non-stop for the 29 days previous, the hardest part of our last visit was putting her down on a large table in a lonely room before walking out.

Sung

Klein's tribute to Baby Allegra: "I miss you Baby Wegwa!"

Mourned

Dear Baby Allegra:

You died one week ago today.  We had a lovely funeral for you this week.  Lots of loving family and friends came to celebrate your short, sweet life.  But the only person I wanted to see was you.

Love,
Your Mom

Communicated

Balloons Announcing Baby Allegra's Birth

I napped yesterday morning.  For a few minutes I felt a warmth on my chest as I laid on the bed.  It was the same warmth I felt when holding Baby Allegra on my chest to sleep--my heartbeat soothing her.

And last night, after her funeral, the sunset was pink.

She must miss us too.

Graveside Service for 

Allegra Sprouse Pulley

Wednesday, June 22 at 7pm

At the Cemetary of Bayleaf Baptist Church

12200 Bayleaf Church Road

Raleigh

Although we are not members of Bayleaf Baptist Church, they are graciously providing space for Allegra so she remains close to home and in view of the church's children's park.

Gone

Baby Allegra passed away at 6 this morning.

She struggled with severe congestion all night making it impossible for her to eat or sleep. I spent the night holding and comforting her.  After sitting outside to watch the sky lighten and hear the birds chirp, we walked inside and she died in my arms.

Her tiny, sweet spirit changed us as we worked to make her quick life a happy one.  She is already missed.

We will post funeral arrangements here at the beginning of the week.

Celebrated

Dear Baby Allegra:

You were born 4 weeks ago today.  I don't know how to do this.  I'm happy.  I'm sad.  I'm scared.  And I'm attached.  Maybe this would be easier if we tried not to love each other so much.

Love,
Your Mom

Wished

Today Levi said to me, "Mommy, I wish Baby Allegra could stay with us her whole life."

She will.

Day 27

Unfortunately, Baby Allegra was grey today so she spent much of the afternoon and evening on oxygen. During feedings she would then turn purple because breathing WHILE eating is sometimes frustrating.

The good news?  She was surrounded by the fun, noisy chaos of siblings playing with cousins and held by adoring aunts and an uncle.

The picture at right shows Baby Allegra spending time with her big sister Cairo.

Styled

Two swirls of hair on the sides of Allegra's head meet in the middle to effortlessly form this mohawk.

Read

A friend recently gave us a children's book titled "The Three Questions" based on a story by Leo Tolstoy.   Through serving others, the book's main character learns about compassion and living in the moment.  In the end he is told...

"Remember then that there is only one important time, and that time is now.  The most important one is always the one you are with.  And the most important thing is to do good for the one who is standing at your side."

Inside the front cover, my friend inscribed, "For Allegra, whose time is now."

Day 24

Allegra is hungrier and eating more, but doesn't seem bigger yet.

When she opens her mouth to eat, her lips form a circle no bigger than a Cheerio.

She likes to stretch her arms.

When she sleeps she rests the knuckle of her left index finger in the dimple of her left cheek.

Celebrated

Dear Baby Allegra:

You were born 3 weeks ago today. You have affected more people in days than most people do in years. Somehow, your imperfections inspire.  No Olympic medal, Ivy League diploma or Nobel Prize could make me prouder of you.

Love,
Your Mom

Day 21

One visit from hospice nurse and social worker.
No visible change in weight.
Worked on feeding technique.
Still congested in lungs.
Spending more time with eyes open.


The kids love Baby Allegra and argue over who gets to hold her next.  Just like Mitch and I, they appreciate every day she's here.

At bedtime tonight, Cameron prayed Baby Allegra would love us.  Levi then prayed Jesus would make heaven fun for her.  Cairo just wanted to hold Baby Allegra on her bed until lights out.

And Klein?  He walked past Baby Allegra today as she slept in the moses basket and said, "Baby Wegwa!  And she's not dead!"

Realized

While pregnant, I was frustrated with people who comforted us by saying they were "praying for a miracle."  As if an extra chromosome and multiple physical abnormalities could magically disappear.  Despite my faith, this idea seemed naive.  Besides, I'm the mother and all I prayed for was a few minutes with a breathing baby.  After 20 days with Allegra, I now realize we've witnessed several miracles...

(1) After checking in to the hospital the night before my induction (Pitocin was to start around 5:30 a.m.) my body instead went into labor on its own around 2:30 a.m.  Allegra was born before 5 a.m.

(2) During labor, Allegra's heart rate dropped significantly during every contraction.  My midwife explained an epidural would lower my blood pressure, potentially slowing the baby's heart rate as well.  I knew this and my birth plan requested no pain medications.  Weak though, I eventually gave up on natural labor and asked for an epidural.  Allegra was born 4 or 5 contractions later with no time for administration of an epidural.

(3) Only 10 percent of babies with Trisomy 18 survive birth.

(4) Six hours after her birth, we were able to bring Allegra home to be with her family.

(5) 20 days with Allegra so far.  480 hours.  More than a few minutes.

Amazing.  With a breathing Baby Allegra laying on my lap, I am humbled.

Day 19

Enjoyed first bath today.
Spent time on oxygen because skin is ashen in color due to congestion in lungs.
Napped.
Ate.
Repeat. Repeat. Repeat.....

Stored

I wish the brain had better recall for smells and touch.  Unlike images and information, things affecting these senses seem forgotten until one again encounters something similar.

Because of this, countless times a day I run my nose along Allegra's profile hoping the smell of the pink lotion that has soaked her soft, fuzzy new skin will imprint somewhere in my brain's recesses.  Then, when my arms are empty, I will have clear memories of her smell and feel.

Elsewhere in my mind I have also spent time storing the feel of the soft pads on the bottom of Allegra's feet, the stiff grip of her fingers curled around mine, the weight and size of her bitty body, the fit of her left dimple under my pinkie, and the warm exhales of her sweet baby breath.

Dolled Up

Blue jacket and yellow hat courtesy of Madeline (not shown).

Day 16

One fun uncle left.
One feeding spit up through nose.
One apnea episode.
Stiff hair resulting from so many kisses on head from Cameron and Klein.
One new pair of socks that fit like mini-Uggs.
One new preemie bottle to try.

Day 15

Day 15 Update: One visit to the pediatric cardiologist.  Three VSDs (holes in the heart).  One underdeveloped left side of heart.  One ductus still wide open allowing Allegra's heart to keep functioning.  No new or definitive information.  One weigh in for Allegra (now 3lb. 11oz.).  One visit from the hospice nurse.  Feedings now every 1 1/2 hours.

Celebrated

Dear Baby Allegra:

You are 2 weeks old today.  I don't mind when you cry in the middle of the night.  Sometimes all I need to do to quiet you is touch my forehead to yours or place my hand under your little bundled body.

For such an easy baby this sure is getting hard.

Love,
Your Mom

Composed

The letter Mitch wrote to Baby Allegra the night before she was born inspired our freakishly talented friend Ben Howington to write this. Listen for yourself.




Day 14 Update:  One fun uncle arrived.  Multiple naps.  Multiple feedings (1/2 oz. every 3 hours).  One feeding spit up through nose.  Babysat by uncle while we went to see Levi be a warthog in his awesome class play.

Bought

I let myself buy clothing for Allegra yesterday.  I ran into Gap and bought a few pink preemie onesies and a pair of teensy lavender pants with ruffles on the bum.  The purchases felt happily hopeful yet restrained by Allegra's unknown life span.  I didn't allow myself to buy much and I wouldn't buy anything the next size up no matter the sale price or cuteness factor.  Standing in the store surrounded by clothes for growing kids made me ache.   And wonder.  And appreciate the now.


Day 13 Update: One apnea episode that turned Allegra purple.  One new sleeper worn.  One diaper messily fell off.  Then one new onesie worn.  One visit from the hospice nurse.  One helpful grandma left.  One loving aunt left.

Spoken

Every day Levi gets home from school, runs to the kitchen to look for a snack and asks, "Where's Allegra?"

As he held her yesterday after school Levi told me, "Mom, I'm glad Allegra got to live. "

I replied, "Me too buddy,"

"I wish she could stay," he said.

Unable to respond, I just rubbed his back.

Dressed

Preemie-sized clothing remains too big for Allegra.  Thankfully, Cairo's doll clothing is not.  See below.

Oops!  Tiger costume is a wee bit small.

Pictured

This morning our friend Kimberly Naranjo, who has regularly photographed our family since moving to Raleigh, came to shoot some family pictures.  While we don't have the results of that session yet, most of the professional-looking photos on this blog were taken by her.  In addition to running a professional photography business, Kimberly also generously shares her talents by taking pictures of families where a parent or child is terminally ill.  She calls this "The Remember My Love Project".

You can read about her project and look at more of her beautiful work here....

http://www.evolvestudiophoto.com/

And if you're wondering, Allegra is doing well today.  The jaundice is gone and her skin color has returned to a healthy pink although she does have a gunky right eye.  The episodes of apnea are becoming more infrequent thereby reducing her time spent on oxygen.  She likes to sleep, cries only when hungry and is rarely put down.  She is a sweet, quiet baby.

In the picture above, the stuffed animals were picked out by siblings Cairo, Levi and Cameron to give to Allegra in the hospital.  Not shown is the pink pacifier Allegra's littlest brother Klein chose for her.

Day 9

She's still here.  And she snores.

Celebrated

Dear Baby Allegra:

You were born one week ago today.  Unquestionably, you are the best four pounds I have ever gained.  And one day you will be the hardest four pounds I have to lose.

Love,
Your Mom

Compared

From left to right: Softball.  Baby Allegra.  Baseball.

Day 7

Birds are chirping outside.  The sky is turning blue.  Small feet are padding around upstairs.  And I have a little bundle of baby resting on my lap.

It's Day 7 with Allegra.

Seven days have given her time to figure out a few things.  She likes to wiggle her arm free from the burrito wrap and tuck it under her chin when she's relaxed.  She cries when she's hungry then finds her fists to suck.  She makes sweet gurgling baby noises.  And she sleeps with her head on my chest.

For a girl with only half of a working heart, Allegra's efforts to stick around are certainly whole-hearted.

Filmed

Here's video footage from the day Allegra arrived. Special thanks to our dear friend Lori Collier who jumped out of bed at 2:30AM to drive to Chapel Hill and capture these precious moments.

Minute 0:30 Ali says to Mitch, "I can't believe she's alive."

Minute 3:09 Mitch says to Klein, "She waited just for you."

Smitten

Before Allegra was born, and in an effort to make this experience seem easier, I tried to convince myself I wouldn't be able to love Allegra as much as her siblings because of her imperfections.  Yet again, so foolish of me.  I love her small head covered in dark hair, her eyes that will do no more than crack open, her round pink lips that open in a perfect circle, her fingers that bend over each other, her long skinny arms, her twisted legs and rounded feet...it's all perfection.  All of us fall more in love with her everyday.

Mitch and I take turns spending time with her and meeting the needs of the other kids.  Mitch loves to lay down and cradle her in the crook of his arm.  He is the quintessential doting father--oohing and awing over every yawn and gurgle.

Cairo lays on our bed and stares at her as she chats away to us about her life.  Yesterday at school her teacher allowed her to pull up the blog on the smartboard (large classroom computer screen) and show pictures of Allegra to her class.  She is always willing to sit and hold Allegra if we need to do something.

At 4 a.m. this morning, Levi walked into our room to use the bathroom.  When he finished, he came over to where I was feeding Allegra, hopped up onto the arm of the chair and said, "I'm glad Allegra was born.  I know what will make her open her eyes...", then he bent over to kiss her head causing Allegra to raise her right brow and peek out for a look.  "I guess I have magic kisses," Levi said before kissing me then heading back to bed.

Cameron is content sitting on the couch holding Allegra and kissing her every time he sees her.  At the hospital, when Mitch told the kids we needed to give Allegra a special blessing, Cameron walked over to her, bowed his head and said a small prayer for her.  Last night he introduced his friend Ben to Allegra, telling him, "Ben, you can kiss her.  She likes kisses."

Klein wakes up in the morning and runs into our bedroom looking for "Baby Wegwa".  Then he climbs onto our bed to kiss her.  Whenever he sees Allegra we must lower her in response to his request to "Tiss her head!"  Sometimes he talks to her in a high-pitched voice, telling her to "Say goo-goo ga-ga!"  She hasn't responded yet but he keeps trying.

She is adored.

Invited

Thank you to everyone who came to meet Allegra last night.  Unfortunately, we completely forgot to take pictures.  We are so happy to share our sweet baby with those who have thoughtfully supported us in so many ways.  We are truly and totally overwhelmed by everyone's love, whether near or far.

BABY ALLEGRA'S QUICK & HAPPY HOUR

Monday, May 23

From 6 to 7 pm
At the Pulley Home

Adults and children are invited. No gifts please.

Sorry, no refreshments will be served.  However, you are encouraged to go out for ice cream after stopping by.

Day 4

Another night and Allegra continues to fight. Last night the power went out and we had a few tense moments as Allegra's breathing tube was reconnected to the backup tank. Fortunately, we'd practiced this thereby making the real thing much easier.

Since birth Allegra has been fed through a syringe with most of the formula spilling out of her mouth. This morning she showed off some new swallowing skills. Way to go kid!

Day 3

Grateful she's still here.
Periods of breathlessness are increasing in length and frequency.
A particularly long pause last night felt like she was leaving for good.
Moments later her cheeks returned to a rosy red color and she peeked open one of her eyes.
I think she's preparing us.

Loved

After checking in to the hospital on Thursday night for an induction, my body instead went into labor on its own and Allegra came into the world on Friday morning just before 5.  Stunned by the speediness of her arrival, I looked down at her on my chest, noticed her mouth slightly moving, and wondered if she was alive.  Usually after delivery I'm listening for the announcement on gender, this time I waited to learn if she was breathing. Neither the midwife nor the nurse confirmed.  So Mitch and I watched her.  Slowly she moved.  And again.  With relief we realized she made it.  Such a good girl.  Allegra met her excited siblings and grandparents an hour later and was showered with hugs, kisses and an unquestioning acceptance of her physical differences.

Allegra has the full pink mouth and dark hair that I dreamed.  She looks perfectly normal burrito'd in a blanket with a little hat on her head. When unwrapped though she has visible defects resulting from the Trisomy 18 including misshapen ears, extra folds of skin at the back of her neck, curled fingers (neither the thumb nor the first finger can bend), and a club foot.  Regardless of her diagnosis and the resulting anomalies, she is perfect and we adore her.

After a restless night of feedings and fussiness, I woke up this morning with a tiny snoring baby sharing my pillow. Perfection.

Spirited

Closing in on 36 hours...

A few anxious oxygen moments but Allegra is one tough girl.

We're enjoying every minute!