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.