Checked

Visited the midwife yesterday...

Baby's heartbeat: 130s (normal)

Baby's position: Head down (baby remains small and amniotic fluid plentiful making shifting still possible)

Fundal (belly) measurement: 36 weeks (slowing)

The doctors decided the risk for stillbirth after 40 weeks for a baby with Trisomy 18 increases slightly, just as it would for a healthy birth.  Although the hospital's policy is not to deliver babies until 39 weeks to ensure adequate lung development, our "special circumstances" allow us to schedule induction as soon as we want.  We're hoping my body will go into labor naturally.  

When Baby Allegra does come, we'll post regular updates on the blog.

Celebrated

Dear Baby Allegra,

You're 37 weeks along today. I feel you swishing inside me, yet I miss you already.

Love,
Your Mom

Committed

Women are curious about whether or not abortion was encouraged when we learned of Allegra's fatal condition.  I don't recall the word "abortion" ever being used.  Instead, words like "terminate" or "end the pregnancy" were cautiously spoken and a potential time frame was outlined to meet the legal time limit of 21 weeks gestation.

When discussed, it was one of two options.  As my earthy midwife explained, "You can terminate the pregnancy OR you can choose to treat each day of this pregnancy as a gift."  Neither the midwife, the specialists, the sonographer, nor the genetic counselor worked to convince us of a superior choice.  None expressed what they would do if placed in a similar situation.  They just presented the options and looked at us, waiting for our answer....

Obviously, but not entirely easily, we chose not to terminate.  Our decision was accepted and the hospital immediately assigned us a social worker to assist with our planning of this pregnancy and delivery.  The resulting coordination of care we've received has been impressive.

Frozen

Amidst a fast-moving and chaotic Dollywood mob scene (a regrettable family adventure), Cairo stands still.  A perfect illustration of what it felt like to get the news that Allegra has Trisomy 18.  Just as we'd come to terms with having another baby, we learned nothing about this pregnancy would match our previous experience.  Our world briefly, and thankfully, seemed to slow so we could adjust.

For this pregnancy we initially rejected all genetic testing and counseling.  In fact, the day before our first ultrasound I canceled the recommended appointment (recommended because of my "advanced maternal age": 37) with the genetic counselor telling her I'd call if anything was abnormal.  So foolishly confident.

Driving home from that ultrasound with the doctor's prediction of Trisomy 18, I remember looking at the seemingly normal drivers around me thinking, "That person is okay, their day unexciting, their life not rocked with bad news."

And then again a few days later, on the way home from the amniocentesis, I stopped into Target.  I remember standing by the shopping carts watching people chat, get carts, check out, and just move and breathe without effort.  I saw a family I know, but was too stunned to walk over and start talking.  It felt like a scene out of a movie, where people are busily spinning around, but you're at a standstill trying to remember what normal felt like.

I can't recall receiving such heartbreaking news before.  Information so sad it's paralyzing.  Thank heaven though, regardless of one's state of mind or emotions, the world keeps on spinning. You're forced to clear spaces in a foggy mind to keep functioning.  Life changes.  Thoughts are often preoccupied.  Tough decisions are made.  But needs must be met--particularly in a family with four other sweet, healthy, busy kids--thereby preventing "shut down" as an option.

I've found functioning through grief, just keeping myself busy with the mundane, is a helpful survival skill.  I realize this skill will be further refined by other events as life continues.  It's not a bad lesson.

Another lesson learned?  Buying makeup at Nordstrom is far more fun than therapy.

Written

Unlike any other pregnancy, this time we wrote a birth plan.  It's thoughtfully detailed and has been distributed to the midwives, doctors and nurses involved in Allegra's birth.  The hospital assigned us a social worker to coordinate meetings with specialists to answer questions, discuss contingencies and review our plans.  It covers decisions like how often we want the baby's heartbeat monitored (intermittently) to who holds the baby first (Mitch) to what we want done to keep Allegra comfortable.

Basically, we hope to keep the birth as natural as possible, but if the heartbeat is lost during labor then an epidural will be administered. Although the birth plan has been distributed and studied, we can make changes as the need arises.

No matter how many times a woman gives birth or how well-laid the preparations, there's still a fear of delivery that develops toward the end of pregnancy.  Usually such anxiety is abated by excitement to meet the baby.  This time the fear is multiplied since the outcome is uncertain, thereby dampening enthusiasm for the end of a pregnancy and its sweet result.

Celebrated

Dear Baby Allegra:

You're 36 weeks along today.  I washed the bedding for the moses basket and bought you one outfit.  Just in case.  If you don't have the time to come home, I understand.

Love,
Your Mom

Checked

Visited the midwife today...

Baby's heartbeat: 130s (normal)
Baby's position: Head up (still has time and space to shift)
Fundal (belly) measurement: 35 weeks (slowing)

Specialists are meeting next week to discuss whether delivery past the due date increases Allegra's chances for stillbirth.

Reassured

This is a talk from a recent session of a LDS conference broadcast from Salt Lake City.   The speaker is Kent F. Richards, who both works as a surgeon and serves as a priesthood leader in our church.

We feel particularly reassured by the story he relates in minutes 7:02 to 9:16.  We've heard of such things happening...



Here's the link to the written version (watch for story about girl in intensive care) http://lds.org/general-conference/2011/04/the-atonement-covers-all-pain?lang=eng

Chuckled

After watching me eat a salad for lunch today, Cameron said,

"So Mom, now that you're eating healthy Baby Allegra's gonna get better, right?"

Looks like the scale isn't the only one noticing my junk food binges.

Sugarcoated

Upon first meeting with a specialist, we ask that their responses not be sugarcoated.  Maybe not our best idea since honesty is so brutal and definitive answers for our situation are hard to come by.  But our desperate search for reassurances persists despite doctors' non-commitment on the outcome.  Friends who have researched Trisomy 18 online tell us about babies living for different periods of time.  We understand this is a possibility and remain hopeful, but we are also in possession of a fuller range of information and professional opinions than a mere Google search can provide.

Here are some of our realities...

(1) 90% of babies with Trisomy 18 are stillborn.  Of those who survive to birth, 50% will die in the first 30 days.  Of those who live beyond that month, 90% will die in the first year.

(2) Even if the baby is in distress, our midwives and doctors are unwilling to perform an emergency ceasarean section.  Because I've never had a caesarean previously and the procedure doesn't guarantee a live baby in this case, it will only be performed if my health is in danger.

(3) If we go in for labor and the baby is found to be in breech position, the midwives and doctors will deliver as breech.  Apparently, a "tested pelvis" (their lame words, not mine) can handle such a delivery with a small baby.

(4) If Allegra is born alive, our goal is to get home with her as soon as possible (within hours, not days).  One doctor asked us to consider if losing our baby on the 40-minute drive home is worth the rush.

Hopeless?  We are encouraged, perhaps foolishly, by the fact that Allegra has held on this long and hope she's holding out to meet her parents and siblings before passing.