Waiting

May 27, 2015

So there we were, waiting to meet with a completely foreign-to-us OB to begin a conversation about our “abnormal” ultrasound results.  We texted the friend who was watching the other kids, vaguely saying it would “be a few more hours. sorry.”  We called upstairs to the midwives to see if anyone was available to come be with us.  Thankfully, Ebony — the dear, strong woman who had helped bring Adeline into the world — was on call and not assisting anyone in active labor.  Her presence was a real gift; a familiar face and a hug in the midst of crushing uncertainty.

And so we met with a doctor who painstakingly — and painfully — clicked through the images of our son and pointed out the abnormalities.  We never knew what was coming next, and when she’d be finished.  A choroid plexus cyst on the brain.  A thickened nuchal fold at the base of the neck.  A small stomach.  What appeared to be six toes.  Clenched hands that wouldn’t reveal the number or structure of fingers.

“Soft markers,” she said.  Nothing in and of itself that could cause problems or that conclusively meant anything.  But things that you often see if there’s a larger something going on.  Chromosomal, she was fairly certain — touching on too many body systems to be a genetic condition.   Amniocentesis, that will help us know.  You don’t want that?  Blood test…do you want a blood test?  It only tells you if you’re high or low risk…for three chromosomal conditions…two of which are nearly always fatal…you should consider it.  Here, meet the genetic counselor.

She was gentler.  She assured us that we could take some time to think about the blood test.  We just weren’t sure.  Did we just want a percentage of likelihood?  And for three conditions only?  Would that really bring peace of mind?

It’s so hard in this day and age of instant-everything to be handed a jumble of information, be told it points to a problem, yet have to wait and wait some more for the exact name and the explanation and…the outlook.

Two weeks went by between that day and a marathon day of testing and consults at Children’s Hospital.  In those two weeks, we stood at the gates of Jerusalem, waving palm branches and shouting “Hosanna!  Hosanna!  Blessed is He who comes in the name of the Lord!”  The children danced with sinuous fronds and relished in the freedom of movement in the sanctuary.

During those two weeks, feet were washed in a sign of servant-hood and submission.  Bread was broken and wine splashed into the mouths of the beloved.  The pounding of hammer on nail rang out, and women wept, and rain poured from the sky (as it always seems to do on Good Friday), and the smell of cloves wafted from the burial preparations.

And on that holiest of Saturdays, we gathered with hundreds to traverse the Scripture, from Creation to Redemption to All Things Made New.   And just like every year, as “Oh the Deep, Deep Love of Jesus” bounced off the ceiling of the sanctuary, the tears streamed down my face.

And we awoke the next day, groggy from our vigil, to light and gentle breezes and early-blooming flowers.  The harried and lively preparations for a feast of feasts, with friends and neighbors arriving bearing dishes and greetings of “Alleluia!” or simply an  acknowledgement of this day as a harbinger of spring and new life.  And through it all, a cloud over our heads, this news-but-not-yet-news of our little one weighing heavily on our hearts even as we immersed ourselves in the grandness of that day when we truly knew that Death had lost its sting.

 

A Mother’s Intuition

May 23, 2015

Call it hindsight, call it a mother’s intuition, but deep down I knew that things were different this time around.

Maybe it was the fact that it took a few more months than “usual” to conceive this little one.

Maybe it was the fact that I wasn’t really that sick in the early days, as I had been with the others.

Maybe it was the bleeding at 13 weeks that was scary and short-lived and unfamiliar.

Maybe it was how deeply overwhelmed I was this past Advent by the heaviness of all things wrong in the world.  How I struggled to help my children anticipate the joy of Christmas while all the while wondering “what’s the point of it all?”  How could they care about those little waxy chocolates in the Advent calendar when there were entire villages being taken hostage half a world away?  I felt burdened and anxious.

Maybe I’m imaging I was more worried than I was, but I do know that I dreaded that mid-pregnancy ultrasound.  You know, that exciting one where you can find out if the gender balance in your household has tipped in one direction or another?

I didn’t tell many folks when we would “find out.”  I just said, vaguely, “in a few weeks.”  I even went so far as to tell a few women I was anxious about the appointment, for unfounded reasons.

And so, we entered the darkened room and caught glimpses of our baby, and all the while I nervously held still, and watched the sonogram tech’s face and eyes and the slow pace at which she worked.  This was my fourth child…had they ever taken images of every single vertebrae before?  I couldn’t remember but it didn’t feel right.  She was methodical and relentless in her image acquiring.  She seemed frustrated when she saw the baby swallow but then had failed to capture it.  We found out that our baby was a son, but still, I felt no overwhelming relief…I just wanted her to finish, print a few images, and dismiss us into the light of day.

But we got to his feet.  And she hovered, and finagled, and captured, and then Aaron said out loud what we were all thinking: “Is it me, or do I see six toes?”

“Well, yes, that’s what I’m trying to figure out.”

I knew.  I knew that I had known all along.  Something was different.

Clutching our black and white photos, making feeble jokes about another boy, willing ourselves not to Google what it could mean on our iPhones, we sat in the hallway and waited while the tech discussed our pictures with a doctor we didn’t know.  As she headed back to her room, she stopped to give us a hug in the hallway.  “It’ll be ok.”

to be continued

 

What We Know

May 20, 2015

I’ve done a pretty poor job of communicating consistently with our loved ones regarding Baby Jesse.  So, if anyone’s reading, here’s a short post detailing what we do and do not know.

Since I declined amniocentesis, we will not have an official diagnosis until our son is born.  Therefore, our doctors are basing the diagnosis on the following abnormalities:

An extra bone in each hand and foot (seen on ultrasounds)

Several hypothalamic hamartomas (seen on MRI)

Thickened nuchal fold (a “soft marker” for syndromes)

There are a number of other physical abnormalities that a child with Pallister-Hall syndrome could exhibit.  We will not know those until birth or beyond.  However, we are thankful to report that the doctors are not immediately seeing some of the things in utero that might indicate these other abnormalities.  So, for example, while they cannot see an imperforated anus or a bifid epiglottis prenatally, they can sometimes see byproducts of these abnormalities, like dilated kidneys or extremely small stomachs.

And, obviously, we cannot know whether he will have the gelastic seizures, the precocious puberty, the decreased pituitary function, the cognitive or developmental delays, and a host of other symptoms that can come with this syndrome.

We know that Baby Jesse weighed in at around 2 lbs., 7 oz., on Monday when I was 27 weeks pregnant.  They are pleased with that size and with his movement and activity, and my fluid levels and the appearance of my placenta.

We also found out that I have a low platelet count (107 vs. the desired 150+, with < 60 being alarming).  I will receive some further testing to determine the cause.  The typical culprits in order of likelihood: gestational thrombocytopenia, preeclampsia, and a preexisting underlying condition.  We should know more by next week and are thankful for your prayers.

 

 

 

Baby Jesse

May 9, 2015

Baby Jesse Ultrasound 3Well, hello there, little son.  We are anxiously awaiting your arrival in August!

I’m listening to a song as I upload this picture.  It’s “The Broken Beautiful” by Ellie Holcomb and I’m crying as I press “play again” over and over.

You are sick, little one, and we are scared.  We do not know if we will get to watch you grow up with your brothers and sister.  Or what trials and suffering your little body will face.  All we know is that you are safe right now and we dread and long for August with a most complicated array of emotions.

And that’s why I’m weepy as I hear this song:

I know that I don’t bring a lot to the table
Just little pieces of a broken heart
There’s days I wonder if You’ll still be faithful
Hold me together when I fall apart?
Would You remind me now of who You are?

That Your love will never change,
that there’s healing in your name
That You can take broken things,
and make them beautiful
You took my shame
And You walked out of the grave
So Your love can take broken things
and make them beautiful

I’m better off when I begin to remember
How You have met me in my deepest pain
So give me glimpses now of how You have covered
All of my heart ache, oh with all Your grace
Remind me now that You can make a way

That Your love will never change,
that there’s healing in your name
That You can take broken things,
and make them beautiful
You took my shame
And You walked out of the grave
So Your love can take broken things
and make them beautiful

You say that You’ll turn my weeping into dancing
Remove my sadness & cover me with joy
You say your scars are the evidence of healing
That You can make the broken beautiful