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.