page turn

We’re home and glad to be so, to say the least.

Ultrasound was somewhat of a mixed bag, but all in all, we’re grateful for Bella’s status:

• no hydrops (that’s terrific),
• no growth of the mass (that’s great),
• hole in the heart hasn’t improved but hasn’t worsened (no surprise)
• amniotic fluid was higher (not an alarming thing but something to be watched–may even be much ado about nothing),
• not much physical growth (that leaves us wistful, but sonograms, we’ve been told, can’t have the precision we’d like the later you get in a pregnancy; so the lag may not be as significant as the sonogram suggests, but there’s still a lag everyone would like to see diminished.)

Back for another photo session

Tomorrow (Friday) we go for yet another ultrasound. We’d ask that you pray:

that there be no hydrops

that the mass shrinks or remains the same

and that Bella continues to grow

we can’t thank you enough for your enduring interest, encouragement, and prayer in these last two weeks. We’ll let you know what we discovered.

on frustration and hope

Rom. 8:20 For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope 21 that the creation itself will be liberated from its bondage to decay and brought into the glorious freedom of the children of God.

Last month I challenged myself and the guys in my small group to memorize Romans, chapter 8. It had been recommended to me by a pastor I respect because not only does it act like a kind of fulcrum to Romans–summarizing the substance of what comes before and the basis of the instruction thereafter–but also because it distills the Gospel and Gospel-life into but a few paragraphs.

It’s another sovereign irony that I should be dwelling cognitively on what would become a more experiential reality in a short time.

trend lines and serendipitous lessons

It’s been 11 days now since the sonographer at our routine OB visit paused, and then paused again, and then intensified her gaze at what she was seeing while simultaneously losing the conversational temperament we’d become accustomed to encountering during sonograms.

Blessed Uneventfulness

Rain continues to drench this place each day, saving us from the sweltering heat Houston is famous for. So, it’s a good day when it rains.

It’s also a good day when we have no indication of hydrops.

Yesterday was a good day.

the lighter side

Today with no appointments, we tried to set aside thinking about the complicated and emotionally-fraught preparations for whatever scenario unfolds.  But the calls from the insurance company and the assorted doctors we’ve been in touch with–there was just no way to detach ourselves entirely from the matters at hand. 

The more we think about fetal surgery–albeit within a mile of a center with great expertise in that domain–the more we pray a simple prayer: let they hydrops stay away.  Even if that surgery went well, the chance for pre-term labor (early delivery) is much higher.  Another child delivered early would have their set of difficulties, but Bella’s heart defect would make time in the NICU that much more problematic.

a clean, well-lighted place

We’ve settled into the Ronald McDonald house.  It gave us such pause to have found such a perfectly suited place for present circumstances; we couldn’t help but pause and pray in thanksgiving (Col 3:12-17) as a family in the bedroom of our “summer cottage.”  The kids have taken to it immensely–a welcoming place complete with indoor and outdoor playrooms!

the strategy clarified

[what follows may be more details than you care to follow; if you'd prefer just to know what we need prayer for, scroll to the bottom]

First we want to let everyone know by name for whom you are praying. Our little girl’s name is Isabella Hope. We’ll call her Bella. What a great name for this very special child. “Beautiful Hope” is what she is already. Most of you know that she is not even supposed to have been conceived. We are supposed to be infertile and Christy was still nursing when she got pregnant. This is a most extraordinary baby already.

a full day was had by all at Texas Children’s massive complex yesterday in Houston. A level II sonogram, an extensive echocardiogram, and a fetal MRI–all followed by a nearly 3 hour consult with Dr. Cass, the fetal surgery specialist featured in that Dateline MSNBC story with the link in the prayer request column to the left. (He even had his surgical hat-of-many-colors worn in the interview in his pocket; I asked him if he had washed it.)

Here’s what we learned.

to Houston…

Christy and I will likely drive to Houston this evening in preparation for an early morning analysis Friday at Texas Children’s Hospital’s Fetal Care Center.  Christy spoke with the lead physician of the facility yesterday.  They’ll do a number of scans that can’t be done here in Dallas.  To all who have already sent encouragements and prayers, we thank you.

chapter 1: information overload

On Monday we went in for a routine sonogram, during which they detected a white-ish, opaque region in our baby’s chest-cavity. The obstetrician–a doctor we’d recommend til we’re blue in the face–let us know the baby seems to be suffering from what’s called a congenital cystic adinomatoid malformation, or CCAM–a sometimes spongy, sometimes solid, non-malignant mass that can grow so large that the heart and lungs can be shifted to one side or compressed in such a way that impairs their development.

CCAM can sometimes resolve by itself; or if the mass remains a certain size as the baby grows around it, it can be removed surgically following delivery.

CCAM becomes highly dangerous if the mass continues to grow and either creates excessive pressure on vital organs or pockets of fluid called hydrops. In those extreme cases, death is nearly certain unless the baby quickly undergoes fetal surgery to remove the mass. Fetal surgery is a relatively new science, pioneered, we’re told, by the University of California Hospitals at San Francisco.