1 Corinthians 15:53 For this perishable body must put on the imperishable, and this mortal body must put on immortality. 54 When the perishable puts on the imperishable, and the mortal puts on immortality, then shall come to pass the saying that is written: “Death is swallowed up in victory.” 55 “O death, where is your victory? O death, where is your sting?”

I had to look up words like macabre and morbid again to see if giving you small glimpses into Bella’s final moments with us fell into either of those categories. Macabre is defined by

1.gruesome and horrifying; ghastly; horrible, and 2.of, pertaining to, dealing with, or representing death, esp. its grimmer or uglier aspect.

Morbid shares some of those same connotations. These few pictures we’d like to share with you do represent her death, but as to whether they picture something grim, gruesome, ugly, or ghastly, we’ve concluded they certainly do not. Unlike the Gnostics of centuries past, or even those since who see the body as of lesser value than the soul, we believe firmly in the sanctity of the body, the intrinsic dignity it possesses by virtue of its origin in the mind and will of God. We cherish what is of flesh for obvious reasons: it was God who made this flesh; it was God who came in the flesh; and it will be God who resurrects our decayed flesh when He comes again. So whether this flesh is approaching death or has crossed over into death, that flesh is still of such import, magnificence, and beauty that to conceal it entirely from those of you who’ve come to love our Bella, though you have never seen her apart from her shadowy, in-utero images, seems a kind of deprivation—a diminishment of this particular body’s wondrousness.

They are some of the most intimate pictures we can imagine and that is why we feel it necessary to preface them with words of introduction and context. They include our holding her when the attempt to wean her from the ventilator had failed and we began to come to terms with the fact that she would not endure much longer; when we baptized her in the NICU; when our whole family said their earliest goodbyes to her; and when we had to say some of our final goodbyes. Her body was flawed and frail—as all our bodies are to a greater or lesser degree—but it was and is beautiful to us. We suspect that you will find her as beautiful as we have. Unlike other displays of the body that try to take a whimsical, and thus a de-contextualized look at death (remember the traveling exhibition of Bodyworks?), these images are as much in context as they can be. They conceal neither our sadness at her departure nor our thanksgiving at having had the time with her that we did. They reveal the frustration to which our bodies have been subjected and the majesty with which they’ve been endowed and still retain. They are a visual lament and celebration of this body.

There is a song we’d heard in concert last month from one folksinger we’ve mentioned before in these pages: David Wilcox. Hearing this song again, now having had to realize that Bella could not stay with us–well when you read and hear these lyrics, you may think, as we have, that they were crafted for Bella. In point of fact, David Wilcox wrote this song about hope. He just didn’t know it was about our Hope, our Isabella Hope.

The night I saw her dancing
She moved in liquid music
Like every song that moved us
Was the music of her soul

And waking up at sunrise
With the sunlight through her window
I pulled aside the curtain
Far away from home

When she danced
She knew the music
Like the waving of a wheat field
Gives the hidden wind away

So I’m so grateful for her beauty
And I knew she could not stay

Just the fragrance of her memory
In the satin and the velvet
Time split through a prism
And I knew that she was gone

But I found the note she’d written
If my heart could dare to trust her
Through the journey in the darkness
She’d be with me in the dawn

When she danced
The music knew her
Like the instruments were listening
To the motion that she played

I’m so grateful for her beauty
And I knew she could not stay

So I stepped out on the sidewalk
And I closed the door behind me
Following a fragrance
That was carried on the wind

And I knew I’d never reach her
‘Cause the starlight was the distance
But I knew that right beside me
Was where she’d always been

Now when we dance
She moves right through me
I know love is coming to me
From the promise that she gave

So I’m so grateful for her beauty
‘Cause it made my heart so brave

We’ve sprinkled our thanks to you throughout our telling of Bella’s story, but we think it’s time to make time for a more focused thanks–even if what we can say can’t possibly begin to say enough.

To all of you–whether you’re near to us here in Dallas, or whether you peeked in from places we’ve never been to or even heard of–we are so humbled and thankful for your innumerable displays of affection, support, and encouragement. To those who sent postcards to Bella, please know a dear friend was kind to assemble them in a sweetly arranged scrapbook. They elicit tears when we review them, but they are so very precious to us.

Jesus’ admonition near the end of His Sermon on the Mount has never been the truer for us: Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble. Each day has its own responsibilities, its own burdens. Grief is work. To think long-term is too much. But it’s not putting on a brave face for us to say that we have experienced that thing called “consolation” in these several days since we buried our Bella. The cold wind of sorrow has been tempered by the warmth of knowing she continues, and is more alive than she ever has been–more alive than any of us who still walk this earth. It warms us also to reflect on the many mercies attendant to her last hours. And, finally, it warms us to remember how surrounded we have been by you all. Your repeated inquiries into our condition, your kind notes of sympathy–many from you whose faces we’ve never seen or whose hands we’ve never held–your unremitting aid to our family–all these acts of lovingkindness have had the effect they were designed to have. The strength we have needed has been in large part supplied by you.

As I said at her funeral, this Christmas has been the clearest yet (of which I hope to share more later). In short, when all the impetus to engage all the trappings of the season evaporates, and you’re left to see and think of what Christmas means in its raw essence, there is a truer, purer, more enduring comfort to be had. The sentimental wistfulness you might feel at shelving all the paraphernalia–the decorations, cards, finery–now seems like such wasted emotion when what we’re meant to feel and focus upon is what His incarnation, death, and resurrection signify: there’s always reason for hope because in Him is the hope of–among many things–consolation and, as He says unequivocally, continuation in unmitigated fellowship with Him following our final breath.

Your love throughout these months, and especially in these last several weeks, has only served to heighten what we regard to be, as we’ve said, our clearest Christmas yet.

In the days to come, we’d like to share with you a few pictures of some of the short time we had with Bella. We feel that in a way you are as much her family as we are. To share a few glimpses of her seems only fitting, even if what they portray is bittersweet.

Our cup runneth over. Surely goodness and mercy have followed us through you all the days of her life.

Patrick, Christy, Seamus and Savannah

Ecclesiastes 7:2 It is better to go to a funeral than a feast. For death is the destiny of every person, and the living should take this to heart. 3 Sorrow is better than laughter, because sober reflection is good for the heart. 4 The heart of the wise is in the house of mourning, but the heart of fools is in the house of merrymaking.

It was but another mercy you all showed us yesterday in being with us in our grief.  Thank you.

Words for Bella
A gift from her daddy on the day of her service of hopeful mourning

When first we saw you in veiled mist
Our eyes did squint, “Could it be this?”
We’d never dreamed you’d come our way
Surprising us to break forth one day

We watched you grow; we drew our dreams
A vision of trio in our eyes did gleam
And then a stare, a pause perplexed
What could it be, inside we vexed

A burden deep inside your chest
A thing that would not give you rest
A pox, a strife to be overcome
A fight that needed to be won

And then the battle did begin
For life, for Hope that lie within
We massed an army of heaven and earth
To fight this fight, to show your worth

And valiantly did your frame contend
As we your admirers did you defend
Until you broke forth into our world
In all your wonder you were unfurled

And soon we knew, you knew before
A burden deeper for which we could do no more
And so you glanced off this terrestrial ball
Into fearful and wonderful Hands did you fall

This day we mourn; we want you back
Though where you are you have no lack
So breathe, our darling, dance and sing
We’ll see you when He comes—the Lamb, the King

Isabella Hope Alexandra Lafferty went on ahead of us, into the Presence, this afternoon around 1:30, in her daddy’s arms, surrounded by her mother and big brother and sister, and other dear admirers. Her big brother Seamus got a chance to hold his little sister before she died.

The mysteries surrounding all her afflictions found their answer in the chromosomal defect called Trisomy 18. Her heart, brain and lungs had been so compromised that she could not support herself. Her beautiful little body just could not do what bodies need to do to live.

We’ve scheduled the funeral service at Park Cities Presbyterian Church, 4124 Oak Lawn Ave, at 1:00pm, Friday, the 21st.

To all of you who have accompanied us on this leg of Isabella’s journey, words fail us presently. For now, thank you. We love you so.

She was truly a miracle and a mystery. We will miss her so. Our hearts grieve… not because she is in her Father’s arms, but because our arms are empty. But we will try not to grieve as those without hope.

Tonight, both mother and child are stable. Christy will likely be discharged tomorrow (Tuesday).

Bella is being weaned off the ventilator this evening and taking her first sips of her mother’s milk through a syringe. She will, of course, remain in the NICU for the forseeable future. Her cardiac condition is stable, but we still anticipate having to transition to Children’s in the near-term. Everyone involved is hoping and praying (and you would be surprised to hear how many of those attending her add prayer as part of their protocols) that she will fatten up a bit before we have to think about surgery.

Just as she has throughout the pregnancy, Bella continues to offer no shortage of mysteries. Due to the rather odd coincidence of heart defect, low birth weight for a nearly term baby, the excess amniotic fluid during pregnancy (polyhydramnios), the thinness (gracility) of her ribs, and other subtle anatomical features, the neonatologists elected to run the bloodwork that would offer some insight into her genetic/chromosomal situation. Results from those tests won’t be available for around a week or more. I know it may seem we’ve lurched back and forth as to whether Bella has some genetic abnormalities; we’ve certainly heard our share of impressions, insinuations, and educated guesses on both sides of that debate from the medical professionals involved in her care. Now that Bella is in plain view, one can’t help but wonder if there’s some common denominator–some syndrome with a name–that might explain her quiver of curiosities.

As you would expect, the uncertainty surrounding those issues and their potential implications for prognosis and long-term care give us pause, and, we confess, occasional spikes of anxiety. Your prayers are certainly welcomed.

Meanwhile, we thought you might like a video vignette of part of our day. (The new camcorder is getting a workout)

His Providences continue–many through you.  Thanks be to God for you.

Elvis has exited the building.

Christy started having a “different” kind of contraction late yesterday afternoon. We made the trip to Labor and Delivery just to make sure things were all sealed up tight. (Seamus had forced us to make a dry run to the hospital prior to his delivery, and that’s what we thought this trip might be.) But once the monitors were attached and the OB made a trip through some pretty frigid Dallas air to have a look, Christy’s contractions seemed to be progressing. In light of both the behavior of the contractions and that this would be Christy’s third C-Section, it was determined that protracting this process was probably unwise.

At around 11:36 pm, just a few moments shy of the birthday of her grandfather, and in the very same OR delivery room as her big brother, Seamus, met the world four years earlier, Isabella Hope Lafferty, entered into previously uncharted territory. She apparently preferred her time as a fish because it seems she took a venti-sized gulp of amniotic fluid on the way out of her mother. Her lungs were filled to the brim and had to be quickly cleared to help her get some adequate breaths.

She weighed in at a very petite 4 lbs, 2.6oz. Because of the difficulty getting breaths, the neonatologist present deemed it necessary to take her to the NICU, but not before her adoring mother got a chance to cast a loving, tearful glance at her new daughter whom she was surprised to find adorned with a pate of brown, curly hair, (quite uncharacteristic of previous Lafferty children).

In the NICU, an echocardiogram and x-rays were performed. The first hurdle Bella needs to clear is the water-logged status of her lungs. The quicker those dry out, the quicker she can have that ventilator removed–and the quicker she can get her nourishment from her mother.

The echocardiogram revealed that the hole in her heart–the VSD–would likely need attention within a week, rather than in weeks. With the shunting of blood between ordinarily separated ventricles, the heart has to work harder to perform the same output. The harder a heart has to work, the more susceptible to heart failure–the progressive deterioration of the heart’s efficiency. More tests will, of course, follow to get a better read on the timeline of the next step, but we’re so very glad to be near one of the premier pediatric cardiology facilities when the time comes to repair the heart.

As her weight indicates, Bella is a very preemie baby. There’s a lot of development that needs to proceed. Although her actual age is somewhere between 37-39 weeks, she has features more reminiscent of a 33-35 week baby. There may be some genetic factors in play here, but there doesn’t appear to be any chromosomal issues that would make Bella’s fight for maturity more difficult. Interestingly she has only 11 pairs of ribs–one less pair than normal–and those ribs are a bit thin presently–what doctors call gracile. She also shares a couple funky traits with her father: a few webbed toes, and a slight inward curvature of both pinky fingers–both, undoubtedly, preliminary signs of brilliance…and commensurate humility.

It was said to Moses in the earliest days of the Exodus, as Egyptian armies beared down on him and the nation of Israel, “The LORD will fight for you, you have only to be silent.” Bella has been in that moment for a while now and will continue to be, as she is defended by scads of kind and knowledgeable doctors and nurses, and embraced, ever so gently, by two loving parents who are just glad to finally see their little rock star and blessing. As always, thank you for fighting for her in prayer. He has been gracious to let us see her see the light of day. She has exited one chapter and entered another. Somewhere in the heavenlies there is a log book that records the responses to the prayers of His people for Bella.

(Though we feel a wee bit sheepish even to say this in light of the abundance of care and concern you’ve lavished us with, but since Izzy is sequestered in the NICU, and since Christy is recovering from something just a shade less cruel than disembowelment, we’d respectfully ask no visitors at this time. By all means feel free to call us on our cell, but we’ll keep this site updated as opportunity allows.)

December 26th, 9:30am

Or 3 weeks from today.

“The Debut“

Yes, the hair on the back of our necks stood on end, too, when we grasped that. Anxious anticipation. We’re so ready to meet this little lady.

Our OB thinks she may even come a bit earlier. Seamus and Savannah were a bit impatient in their arrival. But we’ll keep preparing with the 26th in mind.

And it seems my expertise in sonography is anything but. What I thought was the CCAM in a picture I posted a few days ago was actually her heart. My bad. The CCAM is actually the size of a golf ball right now–not the grapefruit size thing I thought it was. Again, I’ll try to keep my day job. Any of you sonographers out there are welcome to remind us where that mass is. I guess it’s a good thing that it’s not as prominent as it once was. Still, like a frog to a fly, I like to focus on my adversary. So, throw us a bone on where you think it is if you have a sec.

There’s a scene from 2010: The Year We Make Contact that’s come to mind during all this. 2010 is the sequel to Arthur C. Clarke’s 2001: A Space Odyssey, of which the film-version by Kubrick became a classic. Towards the end of 2010, Jupiter shrinks until it implodes with a cataclysmic furor, signifying the first human encounter with an unseen Power in the universe.

So why this scene (of which only the first minute is relevant, but feel free to watch the whole clip)?

The mass in Bella is shrinking! “It’s shrinking! It’s shrinking!”

Not only has she outpaced the growth. The accursed thing has gotten smaller. As the MRI shot to the right shows, the right lung seems to be developing unimpeded, and the left lung, while having to share space with the CCAM, refuses to just sit there like some bump on a log; the left lung is also developing. (If you’ve never read an MRI before, you’re looking at one cross-section of Bella. Her head is pointed downward, and, yes, she has fully developed arms and hands, despite the appearance of two flipper-like protrusions.)

In fact, the CCAM has diminished to such a degree that Bella’s heart has begun to make the journey of a thousand nanometers back to its proper place. Right now it’s right around midline, on its way toward just left of center.

And it would seem Bella has been able to belly up to the bar more frequently of late. Christy’s amniotic fluid level, while still high for a normal pregnancy, has decreased in a remarkable way. Best guess why the level has tapered off is that the crimping the CCAM might have done to the esophagus has diminished. The more Bella can swallow, the less the excess amniotic fluid.

All this leads the coterie of doctors to conclude that we won’t need to deliver in Houston. (phew) The fetal surgeon in Houston went even so far as to say that Bella might be asymptomatic at birth–that is, the CCAM will have no appreciable effect on her breathing such that surgery to remove the mass won’t be necessary for some weeks or months after delivery.

The one variable still in play is just when to deliver. Keeping her in utero as long as possible is good for her lungs, but waiting for Christy to go into labor before we deliver isn’t advisable in light of her amniotic fluid level (why that is I can’t remember). Since we still don’t know precisely her actual gestational age, we’re yet to discover that optimal moment for taking Bella out. Taking her earlier rather than at the onset of labor is preferable, so we’re trending toward a just-after-Christmas Debut. Other tests will follow that will help them nail down that optimal window.

The hole in Bella’s heart remains, but it also remains unproblematic in-utero. With the shrinking of the CCAM, there seems to be a proportional reduction of workload on the heart. So we may be able to postpone open heart surgery until weeks or months after delivery as well. We will know more once little Bella takes her first breath. There is still a discrepancy between the size of her head and the rest of her body-parts, but nothing that gives the doctors pause. (They’re even brazen enough to have looked at Seamus and Savannah when we bring them to ultrasound visits, and comment that we just seem to have kids with big heads.)

To say we’re encouraged is an understatement.

This Tuesday night we’re flying Christy and a dear friend (who happens to be a neo-natal nurse) to Houston for the long-awaited fetal MRI on Wednesday. We are so ready to get a good look at that booger in Bella’s chest and to know more precisely what we might be up against come delivery day, some 4-5 weeks away. We’re making the most of Bella’s jaunt southward. She’ll not only undergo the MRI, but another ultrasound, an echocardiogram, and a consult with the head of fetal surgery, Dr. Darrell Cass (who, we might add, bears a striking resemblance to our favorite troubadour, David Wilcox.)

Aside from the little coughs and sneezes, most things around here are going relatively smoothly. Christy’s hasn’t felt this energetic in months. We “found” a new nanny within a couple days of saying goodbye to our previous gem of a helper. (The winds changed; Mary Poppins had to catch the breeze). Our new help is a DBU student preparing for marriage early next year. We’re so thankful for her and delighted to have her. Plus we think her name is cool: Gilda.

The sense of expectation is all the more heightened this Advent.  What comes in late December (or early January) changes everything.  Much like it did with the coming of a Royal Child into the austerest of settings.  Everything changed.  We’re looking forward to what we cannot see but what we shall receive with thanksgiving.

Everyone’s anxiously awaiting the emergence of our little butterball.  Maybe a little too much.

Polyhydramnios is an excess of amniotic fluid in the uterus due, in most cases, to the baby being unable to swallow enough of the fluid to keep the level at a normal level. We can’t know for sure if that’s the cause, but Christy’s level of amniotic fluid certainly has her in the polyhydramniotic condition. As you can see from the wikipedia entry on the condition, it may be an indication of a gastrointestinal problem, or, as we’ve been told before, a chromosomal issue like Down’s Syndrome. Or it may be that the CCAM puts such a crimp in the esophagus (think: kinked water hose) that swallowing is impinged upon. Christy’s read somewhere that in 65% of the cases, no cause can be discerned. True to form, the mysteries continue.

The excess of amniotic fluid doesn’t put Bella in any danger, but it makes for more discomfort than usual for Bella’s keeper. Christy’s been able to get out more recently–we saw a movie a few nights ago, and she’s been able to attend worship a couple times–but with her tank overfilled, as it were, it’s laid her out. We’re mere weeks away from The Debut, but we don’t want the show to open until it’s worked out as many of the kinks as possible–i.e. keep the uterus from getting too excited so we can keep Bella in place to get her lungs in decent shape. So, her OB has strongly encouraged her to keep lying low.

We believe that a child of believing parents is a child of the church–that the child belongs to the church community in ways similar to how the child belongs to the parents. If ever we’ve seen a picture of the church being a parent to a child, it’s how the church, near and far, has been that host of parents to our little Bella. Humbled is the only way we can describe how we feel.

Quick update: Bella’s growing right on schedule. There is no hydrops, and by the doctor’s estimation, there will likely be no hydrops. There’s good lung tissue visible on sonogram. The hole in the heart, while essentially unchanged, causes no immediate danger (cardiologists tell us if you had to pick a heart-defect, you go with this one Bella’s got.) It is all theory at this point whether the heart condition will cause problems at birth since they have never seen these two anomalies in the same child before now. The contractions Christy’s had continue, but without the regularity or duration of previous weeks. Amniotic fluid is still on the abnormally high side, but the doctors are encouraged that her body has tolerated it well so far.

So we’re down to our last several weeks before we get to meet face-to-face our little Bella Hope. There’s a host of variables still to be determined: how Bella’s lungs will do when she takes her first breath; how the hole in her heart will affect her ability to get good flow to her system; how the combination of lung and heart issues will contribute to the oxygenation of her tiny body. The fetal MRI we’ll have the last week of this month may allow us to better predict what might happen on Delivery Day; but, as we’ve said before, the proof will be in the breathing.

Two other variables to speak of: when she’s coming and where she should take her first breath. Originally we thought she’d be a December 26ish baby, ready to celebrate Christmas a bit belatedly–at least by the Gregorian Calendar. But now it’s possible she might be younger than we first imagined and would therefore arrive around January 6th, Christmas according to the Julian Calendar. So the question is: will she observe the Western Church’s Christmas, or the Eastern Church’s Christmas? West or East? Will she prefer to attend services on Oak Lawn at Park Cities Presbyterian Church, or across the street on Throckmorton at St Seraphim’s (Eastern Orthodox church)? (yes, a little levity)

The other, and a little more serious, variable involves where best to deliver: Dallas or Houston? North or South? The round of tests later this month I mentioned will probably give us enough data to make a decision. If the mass is still fairly large and has significantly impinged sufficient lung development, the best place in these parts to remove a CCAM would be Houston. The sooner that bogey gets removed, the better. But if Bella has stared down the mass and made it cower in the corner, a Dallas delivery would be easily managed, with surgery to remove the mass, if necessary, within the several months following delivery.

That’s where we stand–or, in the case of my sweet, unflappable wife, sit. When we reflect on where things could have gone, we’re quieted with thanksgiving. When we compare our journey here with others who have suffered far more and must draw even greater strength from the abundant graces of the Father who gives and takes away–well, the temptation to start feeling put out for the minor adjustments to life we’ve had to make seems awfully juvenile. This paterfamilias is having to learn to recover that perspective more regularly than I’d care to admit.

Your kindnesses to us are incalculable. Your prayers accomplish things we’ll only know fully when we are fully known.

We’ll be in touch.

If you are new to this website, you may want to go to “What’s Wrong with Bella” at the top of this page for a summary and context.

Well, the day was long but the news was encouraging. We all 4 (well all 5) attempted to go to Children’s Hospital and the Medical University. Had we known how much Bella was not going to cooperate, we would have left 3 of the 5 at home. We were at the cardiologist’s office for 4 hours. Bella was doing her gymnastic exercises and did not want to sit still for the fetal echo. The doctor finally got enough pictures of her to be able to talk with us. Her VSD (hole in her heart) has not changed. She said it would only stay the same or improve, it would not get worse. It us unlikely (medically speaking) that the hole will close on its own because it is so large and it’s not muscular. So, unless the Lord decides to surprise us all, Bella will need heart surgery at some point. The good news is that Bella will probably not need heart surgery at birth. The doctors can’t be sure, because they have never seen a baby with a CCAM (the large lung lesion, mass) and a VSD at the same time. She is already going down in the medical books. But in this cardiologist’s opinion, Bella will not need immediate heart surgery. She also told us that if you are going to have a heart problem, this is the one that is operated on most routinely and has fewer risks than most other heart surgeries.

We then rushed over to the medical university for the appointment with the maternal fetal medicine doctor. There were no signs of hydrops (the fluid throughout the body that would cause heart failure and warrant fetal surgery or early delivery). This was very good news, but my amniotic fluid is VERY high. This is probably because Bella is most likely not swallowing the amniotic fluid like a normal baby would. This causes a backup of fluid in the uterus. This is potentially dangerous because it can trigger early labor. Since Bella is not a normal 28-30 week gestation baby, it would be devastating for her to be born now because she does not have enough normal lung tissue because of the CCAM to be able to breathe. So we need you to pray for the amniotic fluid to be reduced. The doctor said this is most likely why I’m having so many contractions. She told me to continue resting as much as possible. I will go to my OB once a week for a cervical check. The only way to tell if the contractions are Braxton-Hicks or labor pains is to keep a check on any changes in the cervix.

[in the style of Lake Wobegon ]: It’s begun to feel a little like Fall around here. The wind doesn’t sweep by you like from a hair-dryer now. The yard gives the slightest intimation that it’s tired of growing for this year. The dogs seem friskier, the colors sharper, now that the oven-like temperatures have receded further south. It’s a slow and welcome transitioning.

The same can be said for Bella: a gradual transition into a quiet waiting period.

Christy’s latest sono showed no hydrops, no appreciable change in the mass, and Bella’s growth-rate was right on-the-money for a three-week period. (The fetal surgeon in Houston went so far as to say that he’s only seen one case of a child at this stage of a pregnancy develop hydrops and require surgery!)  So, no trips back to Houston until 34 weeks when we’ll have another fetal MRI to see the most precise picture we can of the mass. Weekly sonograms continue here at UTSW and we’ll have an echocardiogram next week to check in on the condition of the hole in Bella’s heart.

So we’re in an encouraged holding-pattern presently.

Christy’s been upgraded to “modified” bed-rest now. We’re keeping Wonder-nanny on retainer during the week, but Christy can get out so long as she doesn’t exert herself too much. We took advantage of that new permission by partaking of the fare of the State Fair of Texas last Tuesday. Christy got the regal treatment as she took in the sights, sounds, and smells from the comfortable confines of a wheelchair. It’s the equivalent of the all-access pass in that you get front-row seating at all the shows. Savannah was introduced to her first Fletcher’s Corn-dog as we all gulped down food you’d feel guilty about eating at any other time.

And while we’re on the subject of Savannah, she has a new toy this week: two legs walking without help or support. She outpaced both her big brother and her father by taking unaided steps for the first time at the tender age of 16 months. With every advance though comes new opportunity for trouble, and Seamus quickly found a new spin on an old game: Savvy-tipping. (That game was quickly banned.) Our second-born is not without her retaliatory impulses, though. A quick bite to one of Seamus’ forearms and the shenanigans cease. That, too, has been deemed unacceptable (even though she takes advantage of the fact that she doesn’t yet understand “no”)

We’re nearing the t-minus two-month point. Like watching the leaves changing around here, we’re having to wait patiently for discernible differences. We’re thankful. Thanksgiving comes early this year. To the Father’s credit through you.

If you are new to this website, you may want to go to “What’s Wrong with Bella” at the top of this page for a summary and context.

Dr. Adam in Houston is not so certain that the mass has stopped growing. It’s not that easy to measure this thing because it’s 3 dimensional and the sonogram only shows 1 dimensional. It shifts and moves around in Bella’s chest. So, according to what she has observed, she does not notice that it is looking smaller (as it should be because Bella is growing). The good news is that it is not causing hydrops as of now. If it continues to grow, there is a higher likelihood that it will cause problems. So, obviously, we need you folks to continue praying for the mass to stop growing as you did before.

Also, we are not certain of Bella’s due date. An important measurement was not taken during the early sonogram, so it makes her gestational age uncertain for now. This is good news and bad news. The good side is that she may not be experiencing growth restriction like we have been thinking. The bad side of it is that if she is younger than we thought, she is still in the danger zone of the typical growth period for the mass. So all this is to say, please continue to pray that this mass would stop growing to keep her out of danger.

I have been put on bed rest for a different reason now. Before, it was to help Bella grow. Now, the doctor is concerned about these contractions that I’m having frequently. She said that it is probably due to the high volume of amniotic fluid that I have. This may be because Bella is having trouble swallowing the amniotic fluid because this large mass is pressing against her esophagus and stomach. If the mass stops growing and she keeps growing, then she will outpace the mass and that’s the best case scenario. Actually the best case scenario is that this mass would shrink. They shrink in about 10-20% of the cases. Sometimes the doctor can’t even find them on the sonogram later in the pregnancy.

I have a sonogram again on Tuesday here in Dallas. If there are no signs of hydrops while being monitored here in Dallas, I do not go back to Houston until the end of next week. So, we are grateful for one more day without hydrops. God has provided for our every need throughout this difficult time and He continues to do so. He has given us enough grace for each day.

Please continue praying for God to spare this little life so that she can come and grow up in our family. God will be glorified in whatever the circumstances.

Sometimes no news is good news. And from the last few sonograms, we’ve had relatively good news. Bella still kicks with abandon in the womb–suggesting anything but distress in her secure lodging. There’s not been the slightest hint of hydrops. The maternal fetal medicine doctor here at UT Southwestern was even forthright enough to use language like, “it doesn’t look like Bella will need fetal surgery.” And though the growth lag remains, the lag hasn’t lengthened–that is, she doesn’t continue to fall behind. In fact, there’s arisen a bit of a virtual-debate among some of the doctors we’ve seen as to whether this apparent lag is real or perceived. We’ll spare you the details on why there’s a lack of consensus; and since there’s not really anything we can do to ascertain who’s right, we just make sure momma’s getting her rest and the kids go to bed clean and fed–with credit going out to one fantastic nanny and a whole lotta help from so many.

In all, we are encouraged by lack of any new news to report! The hole in Bella’s heart remains, and while open-heart surgery is nothing to sneeze at, it is not a rare procedure. What the mass will do as Bella grows remains a mystery.  Regardless of its behavior, we’ll likely have to have whatever remains of it removed prior to her first birthday.  They’re prone to causing infections or cancer if left alone

Christy goes back to Houston Friday for what we think (and hope) will be her last follow-up appointment for a while there.  We’ll go back for a fetal MRI at 34 weeks to get the best picture of the state of the mass.

We had the distinct privilege to spend several hours last week with Garrett Morrison, his sister, Carson, and his mother, Jan. Garrett’s the one who underwent fetal surgery in Houston last year and whose story we linked you to from the Dateline special. Seamus and Carson hit it off, and Garrett did his best to prove to Savvy that he could pick her up. Savannah, though, had a look of reservation every time her counterpart tried to show his strength. We don’t think Savvy will opt for a second date–”hey, it’s not you, it’s me.”

But for the incision scar on his left torso from where they removed his CCAM, Garrett has no ongoing issues related to his rather eventful entrance into this world. It was a sweet time hearing from such a “famous” family and seeing one potential outcome of a CCAM patient. And for you House fans (FOX), turns out, Jan told us, there’s an episode from last April focusing on a mother whose pregnancy is afflicted with….you guessed it, a CCAM. Now, the writers do their best to protract the process of diagnosing the problem to build tension, and they pull out all the stops on what could happen to the mother if the CCAM goes unaddressed in the baby–something called Mirror Syndrome in which the mother begins to suffer from the same symptoms as the baby. And while Dr House’s pomposity, coupled with brilliance, is the reason you watch the show, the story takes on a subtext that is rather….well, un-Hollywood like. I leave it to you to download the episode from iTunes for $1.99.

Have been back in Genesis lately. Hagar’s bittersweet story starting in chapter 16 plays out fast. But at its bleakest moment, the LORD meets her in her distress and portends outcomes meant to give her hope and courage. And though what awaits her and her child, Ishmael, isn’t ideal, she nonetheless exults in the Lord’s provision with the words, “You are a God who sees me. . .Truly here I have seen him who looks after me” (16:13).

Irrespective of what happens with our little Bella, we still feel like what Hagar felt in that moment: that we’ve been seen and looked after. There are others we’ve learned of recently who’ve faced far more wrenching circumstances in their respective pregnancies, (like here and here). They’re having to wait upon God’s consolation and strength in a far more difficult moment. I am certain they would welcome your prayers for that sense of being seen and looked after.

Thanks for keeping the watchfires burning, and special thanks to you who’ve sent the postcards. I’m no decorator, but I think making your contributions into wallpaper would be the most decorous thing we could do.

If you are new to this website, you may want to go to “What’s Wrong with Bella” at the top of this page for a summary and context.

(update since this was written: went late wednesday afternoon for a sono, and no sign of hydrops!! Bella was wiggling around so much they could hardly do the sono… the doctor said this is a happy baby and she would not be wiggling and moving around so much if she did not feel good… another good day to thank the Lord for) 

There is nothing “routine” about these sonograms. They are quite stressful. We ask that you pray for us tomorrow as we go for yet another sonogram at the medical university here in Dallas. We are asking for the continued prayers that you have all been praying with us… no hydrops, physical growth, the hole in her heart to close, for the amniotic fluid to not be too high. Let you know how it goes. Especially pray for me (Christy), because I tend to get quite anxious before these tests. Please remember to pray for energy, patience and stamina for Patrick since he is taking up all the slack since I’m on bedrest now. He’s doing a fabulous job!!

And a special thank you to all of those who have brought meals to us during my bedrest, it’s helped more than you can imagine. Our new chef, Patrick, really appreciates it!

If everything goes well and there are no changes and no sign of hydrops, then we will not go back to Houston until next week.