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.

Cracked

Despite the sadness of our baby's situation, we still maintain our sense of humor. Some things that have cracked us up lately?

(1) Last week Cameron put a kernel of unpopped corn in his ear.  We went from the pediatrician to the ER to the Pediatric ENT, who was finally able to extract it. Cameron offered no explanation for his behavior and prefers not to be asked about it.

(2) Everyone getting the giggles at the dinner table.

(3) A funny website that posts random letters written to a variety of people. For example, "Dear Noah, We could have sworn you said the ark wasn't leaving till 5. Sincerely, The Unicorns." (http://dearblankpleaseblank.com/)

(4) Modern Family

(5) After Klein repeatedly "shot" me in the buns while walking the aisles of Target, Levi told me, "Don't worry Mom, if those were real bullets they'd just bounce off your buns."

I share this so you understand what's happening with Allegra is only a portion of our life.  We still work, clean house, make meals, do yardwork, bathe kids, read stories, attend church, volunteer, and tackle everything else we need to in our different roles.  Although sadness rolls over me at varying points on different days there is still great happiness and much gratitude in our life.

Celebrated

Dear Baby Allegra:

You're 35 weeks along today.  Every morning I wait to get out of bed until I feel you move.  I love your baby hiccups most of all.

Love,
Your Mom

Weighed

I recently read that Giselle Bundchen, a Brazilian supermodel, gained 30 pounds while pregnant with Tom Brady's baby.  I too ONLY gain 30 pounds during pregnancy so why is it I'm not ready to strut down the Victoria's Secret runway 6 weeks after giving birth? Oh right, there's a 10" height difference and my babies force me to eat Thin Mints (frozen and by the tube), mini-eggs, cold cereal, chocolate-covered peanuts and other naughty carbs in massive amounts.

Despite the food fest, Trisomy 18 babies, even when born full-term and incubated in a pre-owned uterus, usually only weigh 4-5 pounds.  Apparently, due to a brain that's not fully developed, a growth retardation occurs around 7 months.

This difference is noticeable.  My tummy popped about 6 weeks ago and hasn't grown much since.  My weight has increased by only 1 pound in the same time period.  Allegra's movements only feel like swishes as opposed to the stretching and poking a bigger baby would do.  And strangely, this baby doesn't give off the heat like my others did.

This time I may just gain less than Giselle's 30.  So lucky.

Arranged

We have no previous experience planning a burial and little experience with death and grieving. Knowing our baby won't live long though has forced us to do some research. This is called "making arrangements" in the biz.

The first time I called a cemetary, I didn't even know what to ask. I explained our situation, said I'd never done this before, and a kind woman then shared how details of a burial are handled (and priced). The first time I called a funeral home was harder. I listened as the process of picking up a body, embalming it, dressing it and making funeral arrangements were explained.  The man was gentle in presenting the generalities of his business, but discussing some of the more delicate details made me ache.

In an effort to exhaust possibilities, we've visited multiple cemetaries in the area. We've begged a nearby church to let us buy a plot (no luck, wrong religion, no exceptions). We've discussed "the portability" of cremation versus "the final resting place" of burial. We've price shopped the services of several funeral homes. We've looked at grave markers and considered flower arrangements. There are no firm details yet, but we have the information to feel comfortable in our decision making when the time comes.  Frankly, we genuinely feel lucky to be able to do such planning now. To make such decisions without prior warning would be excruciating.

After visiting so many cemetaries, I'll never look at a silk flower arrangement the same way again.  Ick.

Informed

How did we tell our kids? Unfortunately, Levi and Klein came to the first ultrasound with us because we thought it'd be a fun way for them to see the baby. As the ultrasound progressed, the severity of Allegra's abnormalities were explained first by the sonographer then again by the maternal fetal medicine specialist--both using words like "terminal" and "fatal" but not "death" or "die". Sweet Levi sat there soaking up all the information, understanding more than we thought.

Later that afternoon, while we were playing Levi hugged me and said, "Mom, I don't want our baby to die." He got it. So that night we explained to our kids that our baby girl is sick and probably won't live long.

How are the kids taking it?

Cairo (9): Prefers not to talk about it. Doesn't even want other people to ask about her pregnant mom or the new baby that's coming (even if it's innocently.)

Levi (6): Regularly prays Allegra will have fun in heaven. If you ask Levi about the baby, he will matter-of-factly tell you (whether you're an adult or a fellow 1st-grader) that our baby has to die because she only has half a heart, or she's sick or she has bumps on the back of her neck.

Cameron (4): Showers my tummy daily with hugs, kisses and sweet whispers meant for Allegra. Often asks if Allegra is scared to meet us. Also prays she will be comfortable in my tummy.

Klein (2): Points to my tummy and says, "Baby Wegwa? This her house? She's swimming? And she's dead?"

Their responses are all sweet and insightful. We talk about Allegra often and what will happen when she comes. And when she dies. So they know. How much they truly comprehend and how they'll be affected is tougher to predict.

Comforted

Oddly, one of the most comforting things about this experience is the fact that the circumstances are out of our hands. The 3rd copy of the 18th chromosome was a programming fluke in either the sperm or the egg. A 1 in 3,ooo chance. There's nothing we could've done to prevent this and there's nothing we can do to fix it.

Because of this we've decided to provide "comfort care" if Allegra is born alive. This is a kinder, gentler term for palliative/hospice/end-of-life care. Although we could subject Allegra to multiple surgeries to fix her heart and lung and insert tubes connected to machines to provide basic bodily functions--we've chosen not to do this.

If Allegra is born alive, there will be no shots, no tubes, no scalpels, not even newborn eyedrops, and there will be no surgeries and no NICU. If she needs pain medication it will be given orally. If she needs help eating we'll use a dropper. If she needs help breathing an ambu bag will be used. We do not want to prolong her agony. Because she is genetically programmed for a short life our goal is to keep her comfortable so we can hold her and love her until she passes whether it takes minutes, hours or days.

If we are so lucky to bring our baby home, a hospice nurse will visit our home regularly to help provide care and administer medications. Ironically, the hospice nurse has been the only person who's offered hope that we might have time with a living baby. No other medical professional will commit, much less offer up, an outcome. It's understandable.

We have discussed the process, the care, and the ethics of this decision with a genetic counselor, hospital social worker, specialists (maternal fetal medicine and newborn), midwives, labor & delivery and hospice nurses, and our families. We are comfortable with this decision and comforted by the knowledge that God's plan will eventually allow for Allegra's spirit to be reunited with her body. We feel death is not the end.

This is the hospice agency we chose...

http://www.communityhch.com/

This is our friend Loretta, who watched as her mother died in hospice care and now works to provide others with positive end-of-life experiences...

http://www.endoflifeinspirations.com/

Photographed

These images are from our first ultrasound in December. As the kind sonographer explained, 3D ultrasound images have a clay-like texture making it difficult to capture some details. Baby Allegra does have fingers, they're just tightly clenched into fists with her thumb folded over top.

We had a second look at the end of February. Allegra looked the same, but the ultrasound revealed an excess of amniotic fluid, a condition known as polyhydramnios and common to Trisomy 18 pregnancies (due to baby's poorly developed swallow reflex and decreased kidney function.) This excess fluid caused me to measure 4 weeks ahead of schedule and was a cause of concern for delivery complications. Fortunately, things have caught up since then and I now only measure 1 week ahead (measuring 35 weeks when baby is 34 weeks).

We won't get another look at the baby until we go in for the birth.

Named

ALLEGRA: \ah-LEG-rah\ Of Italian origin. Joy, happy or lively. The musical term "allegro" means "quickly with a happy air."

Nope. Not a family name. Just a name we agreed upon early on. In November, actually. Before we knew.

Diagnosed

On December 15, 2010, a pregnancy ultrasound revealed multiple physical abnormalities affecting our baby including fluid on the brain, cysts on the back of the neck, a hypoplastic left heart, a large cyst on the right lung, and clenched fingers--all indicators of Trisomy 18.

We decided an amniocentesis was necessary, which confirmed the diagnosis days later. At 19-weeks-along we learned our baby girl has the chromosomal defect known as Trisomy 18. Unfortunately, each cell of her body is fatally flawed, containing a third copy of the 18th chromosome. We know that if she survives birth her life will be short.

A picture of her chromosomes is shown at right.

To learn more about Trisomy 18, you can visit the following websites...

http://www.trisomy18.org/site/PageServer
http://www.trisomy.org/

http://www.chromosome18.org/