Eliza update 10/13

Dear family and friends,

There is not much to report as far as medical news goes; the primary purpose of this email is to pass along the attached photo of now-three-year-old Luke holding eight-and-a-half-month-old Eliza ("his favorite sister," he told me yesterday, as he composed a song for her on his keyboard about Tyrannosaurus Rex). He can elicit a smile from Eliza with a kiss on the head almost any time he tries.

As for what's new with Eliza, there's not much. As of this coming Tuesday, she will be completely weaned from all anticonvulsants without any sign of increasing discomfort on her part. This means that as of Tuesday, Eliza will only be on four medications: two for reflux, one for breathing, and one for sedation. What a change from the dozen she was on when she came home six months ago! It feels like a small victory to have finally reached this point.

We'd particularly appreciate your prayers for us as we struggle with what often feels like treading water: we know we're not making any real progress in the sense of Eliza "getting better," and we also daily must face the reality that we have no idea how much longer she
will be with us. As is often the case in so many circumstances, the waiting is the hardest part.
Scripture reminds us to trust that God's timing is perfect ("Be still before the Lord and wait patiently for him" Ps 37:7), and we appreciate your prayers as we struggle with this each day, even as we treasure the moments we have with Eliza.

Love,
us

Eliza update 9/21

Dear family and friends,

Many apologies for being so delinquent in keeping you up to date with Eliza; things have been busy as Sam has started back to school, and it hasn't felt like there has been much to report. As I look back, though, on our last updates, I suppose there have been some significant changes worth sharing.

First of all, Sam's younger sister (and one of Eliza's godparents) Sylvia is now living with us to help care for Eliza. This has been a huge blessing, particularly to Luke and me, who have benefitted greatly from having someone to stay home with Eliza while we enjoy our usual outings to the park, to the museum, even just to the grocery store. Eliza, too, has benefitted from having another adult who loves her in the house: she is held more, and Sam and I are able to spend more quality time with her now that we're afforded small regular breaks from her care.

In addition, as we mentioned considering in our last email, we have made some changes to Eliza's medical care. Having long accepted that Eliza will not be cured in this life, we have made the gradual transition from agressive medical care to, as our hospice organization referred to it, "agressive comfort care." What this means is that we have carefully considered all of the medical treatments Eliza is receiving and have eliminated or decreased those of dubious worth that do not provide her any comfort. For example, during Eliza's waking hours, she is no longer connected to oxygen and oxygen/heart rate monitor. There have been no apparent negative consequences to this change and significant positive ones: "Eliza unplugged," as Sam has called her, is now able to be carried around the house, taken for walks with significantly less hassle, and held without restrictions due to the positioning of cords and tubes. Similarly, we have weaned or discontinued other medications and treatments with no apparent ill effects and much benefit to Eliza. From day one, we have made all our decisions prayerfully considering what is best for Eliza, and for the first time in a long time, we feel like we're finally acheiving that aim.

As for Eliza herself, it occurs to me that she is quite a different baby than she was when we last reported to you. Eliza does not--in fact, is apparently unable to--cry at all. In fact, it has been months since Eliza has cried even once. This change is not due to an increase in medical sedation; her doses of clonazepam (her sedative) have not been changed in a very long time. We can only attribute this change, then, to a continued worsening of her condition, which is also evidenced by an increase in her seizure activity. On average, I'd estimate that Eliza has four seizures an hour, lasting several minutes each. Some hours she has many more; others, particularly when she's sleeping, she may have fewer. The severity of her seizures has also increased. Seizures require a tremendous amount of energy, so Eliza appears exhausted most of the time, the curse of which is that the process of falling asleep and indeed even the state of being tired makes the brain more vulnerable to seizures. It seems a vicious cycle that we cannot break, and it can be heart-wrenching to watch, knowing that there is simply nothing we can do to help. As hard as they can to be watch, though, the doctors assure us that Eliza does not experience any pain or discomfort during the seizures.

Being so tired, then, as well as very sensitive to stimulation, Eliza spends a fair amount of time away from noise and activity. She rarely wakes up in the morning before 10, often as late as 11 or 11:30, and she is generally back upstairs in bed for a nap and a quiet evening/night by 4pm. During her time downstairs, Eliza is sometimes held (which she now clearly enjoys), at other times receives physical therapy or sits quietly in her cradle swing. It is not uncommon for her to snooze during those hours as well. As for feeding, Eliza is still hooked to her feeding pump from 4pm to 10am and still receives a special formula called Pregestimil, as this system is what she seems to tolerate best. Eliza does occasionally fuss a small amount, often in response to a simple discomfort such as hiccoughs or a dirty diaper, but never complains more than a little bit.

On the other hand, Eliza does smile daily now. Most, if not all (and this is the subject of constant debate), of her smiles are connected to seizures, but we have made the decision to take even these "smiling seizures" at face value (no pun intended) and just enjoy how cute Eliza really is. I have attached a photo that a friend who is a professional photographer took of Eliza about six weeks ago; if you'd like to see the rest of the wonderful pictures she took of our family, go to: http://www.pictage.com. The event title is Baby Eliza Jackson.

As for the rest of us, not much has changed. Sam is adjusting to being back at school, teaching and coaching soccer, and Luke and I are redeveloping a routine of playgroups and morning outings. Luke occasionally makes statements like, "I've never been to heaven; where is it?," or, "Soon Eliza will go to be with God," or, "Eliza had a few seizures today," but seems fully his happy-go-lucky chatterbox almost-three-year-old self as usual. We've begun teaching him to read, and he thoroughly enjoys card games like "Go Fish" and "Old Maid" ad infinitum. He's itching to get out on the soccer field with the boys on Sam's team, and has a pretty mean kick himself. He doesn't mind a few daily somersaults and loves to swim, too, both of which placate the diver in me. He has adjusted remarkably easily (as have we all, I might add) to having "Auntie Sylvia" here, and often remembers to thank her for staying home with Eliza so that we can go out to play. Auntie Sylvia considers it a small victory that she has discovered a candy that Luke actually enjoys--he's not big on sweets (or vegetables, fruit, meat...)--so we're all getting along just fine.

If you believe, then what utter insanity it is to question the Master Builder. With Jesus as the cornerstone, He is building us up into a glorious structure. If we live by things that are seen, it is hard to accept Eliza's condition. If we live by what is unseen, then we understand she is another of these personally crafted building blocks--a living stone, as Peter puts it. And what a precious and strong stone she is! Eliza, consecrated to God, beloved by him. All hail King Jesus, may His kindgom never cease.

Love,
us

Eliza update 8/15

Dear family and friends,

Thank you to so many of you who have responded to our
email from last night. We're grateful for your prayers. Just a quick note of clarification: we are not considering "terminating life support" as in so many cases we hear about in the news. What we are faced with deciding is whether to continue a range of medications, some of which, all along, we and the doctors have agreed may not be doing her any good at all. Discontinuing medications would, nonetheless, constitute a significant change in her course of care.

We shared with you many months ago, for example, that we have questioned the usefulness of anti-convulsants in Eliza's case, since no combination of these drugs has ever managed to stop her seizures for a significant period of time. We have reached a point, then, at which the doctors agree that one option among many is to begin weaning these and other medications. We are not at the point of considering withdrawing nutrition or hydration, which, unlike some of the medications, clearly are enabling Eliza to live
comfortably.

We appreciate your sensitivity to the deeply personal and private nature of these decisions.

"Praise be to the God and Father of our Lord Jesus
Christ, the Father of compassion and the God of all
comfort, who comforts us in all our troubles."
2 Corinthians 1:3-4a

Love,
dixiejax

Eliza update 8/14

Dear family and friends,

A short update after a full couple of days:

On Sunday, Eliza was baptized. The celebration
couldn't have been better: Eliza slept peacefully
through the entire thing (water and all!), we were
surrounded by so many family and friends who have
loved and cared for Eliza and our family over the past
six months, and the service was a beautiful
celebration of God's promises and grace concerning His
children, and in particular, His child, Eliza. We
hosted eighty-five people at our house following the
service, which, those of you who have been at our
house will know, is quite a few for our small space!
But God provided even in this detail a beautiful day,
so we were able to use the backyard and welcome so
many of Eliza's faithful friends. We'll send out
photos just as soon as we get them organized.

Then this afternoon, we met with Eliza's pediatrician,
neonatologist, and social worker to discuss Eliza's
future. Rather than go into a lot of detail at this
point, when we haven't yet had a chance ourselves to
process what was discussed, we have a simple request:
please pray for us as we begin to face some difficult
decisions about how to continue with Eliza's care. We
have reached the point that we have long known was
coming, when we must decide whether to continue with
medications and life support, and to what degree. We
covet your prayers for wisdom and comfort as we begin
this discussion.

Oh God, You are my God, and I will ever praise You.

With love,
dixiejax

Eliza's baptism

Dear family and friends,

Eliza will be baptized this Sunday, August 13, and we would love for you to join us. We will be hosting an open house following the service. If you would like to come celebrate with us, please email us at shdbjackson@yahoo.com and we'll give you the details.

Love,
dixiejax

Eliza update 7/28

Dear friends and family,

Boy, where did we leave off? Many of you have stayed
informed through the phoneline or the grapevine; many
more have no doubt wondered when the next email would
bring you up to speed. We are thankful for those who
have inquired out of love and for those who have
abstained, again out of love. Thank you, also, for
continuing in the mysterious and essential work of
prayer.

Eliza will be six months old on Saturday. She has
grown to exceed 15 pounds, and her height has
increased as well. Other than these physical
dimensions, Eliza shows no signs of development.
Mercifully, she does enjoy being held now--and
sometimes cannot be calmed otherwise (a mixed
blessing). With the help of a 3x/day dose of a
sedative, in addition to spending the bulk of her day
removed from all stimulation, Eliza does not have the
prolonged screaming fits she once had. Even when Luke
more-or-less gently shakes his little sister's leg
(before the powers-that-be admonish), she bears it
patiently. Perhaps it's the southern belle in her.
In general, caring for Eliza does not present
excessive physical challenges, once you get used to
it.

On the other hand, caring for Eliza does continue to
present significant emotional challenges. Anyone who
has cared for a newborn will attest to the fact that
the first month is intensely trying: here is a being
who demands all your energy, deprives you of sleep,
and gives nothing in return. Having cared for a
newborn before, I know that to survive the first month
one must keep in mind that "this too shall pass," this
baby will learn to smile, giggle, coo...and will,
before you know it, grow into someone whose company is
truly enjoyable. Eliza, on the other hand, has been
functionally a newborn (though less responsive and
with less recognition of Mom and Dad even than that)
for six months now. Six months of giving all you have
without even a smile and no expectation that this will
change--physically difficult, no, but emotionally
quite a load to carry. Add to this the cabin fever
produced by parenting a baby who is not only difficult
to take out but who makes it very clear that she
cannot handle the stimulation of going out and you can
begin to imagine the state we're in.

On the medical front, Eliza continues to have
seizures, averaging 2-3/hour, depending on the hour,
despite three anti-seizure meds: phenobarbitol,
keppra, and her sedative, clonazepam. Eliza receives
1/8 liter/minute of oxygen through her cannula. We
sometimes increase this to 1/4; other times she can
get by without a cannula at all, as you may have
noticed in pictures (link at the end of this email to
photo album--updated photos to come soon).
Eliminating the oxygen entirely would require
decreasing the sedative. We tried this once and
suffice it to say that we won't be trying it again
soon. Eliza is fed through the tube in her stomach 18
hours/day; we do not plan to resume any attempts at
feeding by mouth. She still vomits occasionally,
usually following a seizure. Her difficulty in
clearing her airway makes these occasions rather
dramatic at times. She still receives physical
therapy twice a week at our house, though we have
discontinued speech/feeding therapy and, as of today,
occupational therapy, neither of which seemed any
longer to be beneficial.

As I gazed into the beauty of a Carolina summer sky
this afternoon, wisps of clouds floating above, I
sought God's face. He directed me to lower my eyes to
see him aright. There are times to ponder the majesty
of creation and its Creator. Today, the Spirit
testified to my spirit about the marvelous lowliness
of the Son: "...one who in every respect has been
tempted as we are, yet without sin." God knows this
struggle first-hand ("every respect"!). We are
fighting an excruciatingly unique battle, but it is
not beyond the scope of what Jesus Christ faced and
overcame. "Let us then with confidence draw near to
the throne of grace, that we may receive mercy and
find grace to help in time of need."

We confess a temptation to hate Eliza, and to curse
the God who has the power to end all suffering yet
delays. We receive mercy. We desire to love Eliza,
and to praise the God who works all things for good
for those who are called according to his purpose. We
find grace to help us.

We pray that you may know the hope we have in Jesus.
In his name alone, we stand before the Creator of all
and receive immeasurably more than what we ask or
imagine, in this life and the life to come.

Love,
dixie jax

P.S. Luke continues to enjoy thoroughly his summer,
having just today spent hours slipping and sliding
down a 98-foot waterslide (with mom along for every
ride, of course). He appears satisfied with the
explanation that Eliza's "brain doesn't work," and
with the assurance that, when she goes away to God,
she will get a "good brain."

Eliza update 7/3

Feeling mostly exhausted and uninspired tonight, but
wanted to share the news: the results of Eliza's
latest muscle biopsy show that it's unlikely she has a
mitochondrial disorder, and if she does, it's a very
mild one that would not cause seizures or her other
symptoms. This is good news all around, as she'll now
take two fewer medications; also, it means her
disorder may not be inherited.

Love,
us

Eliza update 6/30

Dear ones,

Eliza passed the five-month mark yesterday...yet
another small victory for which we're grateful.

We had our initial visit with the ophthalmologist
today. She did a basic check of Eliza's eyes and
determined that there is atrophy of the optical nerve,
which connects the eye to the brain. This is
consistent with brain atrophy, as well as with damage
caused by hydrocephalus. As for what Eliza sees, the
only way to determine this with any certainty would be
to perform another test, similar to an EEG, which,
though non-invasive, would involve some stress for
Eliza and provide no information of use other than as
a curiosity. Yes, we're curious to know what Eliza
sees, but not enough so that we'll put her through
another unnecessary test. So I'm not sure what we got
out of this appointment today...except a follow-up in
four months.

That's all the news that's fit to print...

Love,
us

Eliza update 6/20

Dear all,

Eliza had a pediatrician visit yesterday. Her growth
is good: her length is starting to catch up, and her
weight gain, as many of you observed in that bath
picture, is very good; in fact, she's become a bit
chubby, a nice change for her! We're still working to
try to get her off the oxygen completely, which means
adjusting her meds a bit to see if she can be a little
more awake and still calm and manageable. Only time
will tell.

The question the neurologist wasn't willing/able to
discuss last week, our beloved pediatrician was; that
is, based on her most recent CT scan, is Eliza's brain
continuing to deteriorate? The answer appears to be
yes. Certainly, her brain looks much better on this
most recent scan than it did on the one just before
her shunt was placed, but compared to the MRI she had
several months ago now, this CT scan shows that the
atrophy has continued. This is not a surprise, though
admittedly a disappointment, as we all had hoped that
maybe the atrophy wasn't as bad as it had seemed,
maybe it had stopped, maybe having the shunt placed
and the severe hydrocephalus corrected would make a
dramatic difference. Instead, unfortunately, things
appear to be progressing as the doctors had predicted.

Scripture instructs us not to be "conformed" to the
pattern of this world, but to be "transformed" by the
renewing of our minds. If we were conformed in our
thinking to the pattern of this world, if our hopes
and thoughts did not extent beyond what we see and
touch here and now, we would live in despair. In
Christ, however, our thinking is transformed and we
live in hope. Eliza is not a terminally ill tragedy;
she is a beautiful and eternal person. As yet, we
have had only glimpses of God's purpose in Eliza's
life. We may never know His purpose in full; we will
content ourselves in knowing it is good.

Love,
us

Eliza update 6/16

Dear all,

Just a quick note: we got blood test results today
that indicate that Eliza's growth hormone levels and
cortisol levels are normal. That's a relief.

I've created an online photo album with all the photos
we've taken of Eliza since she was born; the link
follows this message. Warning: some of these photos
were taken when Eliza was extremely sick, and when we
shared these originally with some family and friends,
they found the images too upsetting to view.
Personally, I found looking back through these photos
somewhat uplifting: they show just how far Eliza has
come in the past four and a half months. Praise God
for little victories.

Love,
us

http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=x603pj9.9cvuroi9&Uy=5tsnjr&Ux=0

Eliza update 6/14

Dear family and friends,

Attached are two photos of Eliza in the bath, an
experience she actually *enjoyed* (in other words,
didn't scream through) for the first time ever the
other night!

Yesterday, Eliza had a CT scan (essentially a head
x-ray) to confirm that her shunt is functioning
properly, that is, draining the excess fluid that was
accumulating in her brain due to the hydrocephalus.
The good news is that it is working as it should. As
for any other details, the neurologist wasn't terribly
forthcoming. When asked if her brain looked better or
worse (as far as atrophy is concerned) on this scan as
compared to the last, his comment was that it didn't
look better, and as far as being worse, well, the
damage was so profound before that it doesn't really
matter. Not exactly the level of detail I was hoping
for, but he refused to be pressed for more
information. He doesn't see any reason to put her
through another MRI, so I guess we won't know any more
about the extent of the atrophy in the forseeable
future. Tomorrow, we'll start her on one more
anti-seizure medication, one that hasn't worked for
her before but might hopefully work now (not very
likely, but worth a try).

We do not yet have any results from the muscle biopsy,
and it may well be a while yet before we do. We're
told these tests can be tricky and time-consuming.
We're also awaiting blood test results checking
Eliza's pituitary function, as she has not been
growing particularly well recently.

That's all the news that's fit to print, as they say.

Love,
us

Eliza update 6/2

Dear all,

Eliza had her visit with the neurologists today, who
began the appointment with good news: no seizures
showed up on the one-hour EEG yesterday. The bad
news: both the technician and I SAW her have three
seizures during the EEG recording. What does this
mean? Surely, you can guess the answer: no one knows.
One neurologist began to suggest that, although
Eliza's recent "episodes" have shown up as seizures on
EEGs before, perhaps they're not; maybe they're just
strange symptoms of reflux. As he suggested this,
Eliza proceeded to have three "episodes" (identical to
the ones she had during the EEG recording) in a span
of twenty minutes, which the two neurologists and two
med students in the room agreed could be nothing other
than seizures. So once again, the best minds in the
business have NO idea what's going on with Eliza.

The result of the appointment, then, was an adjustment
in one medication and a referral to yet another
specialist, this time an ophthalmologist, since Eliza
doesn't seem to be able to see. And we'll go back to
neurology in a month. That's that.

Could it be a simple failure of the EEG? No one
suggested that, but I can't help but wonder. After
yet another long afternoon at the hospital (the third
this week), I'm tempted to stick Eliza's head in the
toaster to try to give her an MRI myself; that's about
how much faith I have in the medical establishment at
this point. Thus, I'm all the more thankful that, in
fact, my faith is not in the medical establishment and
never has been; it is in the Great Physician alone,
the only one who has the power to heal. So tonight,
as every night, we will continue to pray and
wait...and to be grateful for your support and
prayers.

Love,
Daniele et al

Eliza update 5/31

Dear family and friends,

Eliza had her follow-up appointment with the
neurosurgeon as well as a visit with the neonatologist
yesterday. As for her recovery from the surgery, all
seems to be going well. She is definitely awake more
than she was two weeks ago; unfortunately, this means
she cries more, too. The size of her head has
actually decreased, which is a good sign that the
shunt is doing what it ought to do, as is the
prominence of the soft spot on her head. Her
incisions are healing well, and we were finally able
to give her a much-needed bath this afternoon. Her
vomiting is greatly decreased, though not halted
completely. Unlike before, however, most of her
episodes of vomiting seem connected to her seizures,
which, unfortunately, appear unchanged since the
surgery. The number of seizures varies, as does the
length of time between them, but they are relatively
frequent (at least one/hr).

During our visit with the neonatologist, Eliza
underwent pulmonary function testing, which showed
that she does not need as much oxygen as she has been
receiving. So we have begun the process of weaning
her oxygen, decreasing the volume by half (down from
1/4 to 1/8 of a liter/minute). So far, she seems to
be doing well with this change.

Tomorrow, Eliza will have several blood tests as well
as an EEG in anticipation of an appointment with
neurology on Friday (the EEG is the test that measures
brain waves and seizure activity--it involves having
electrodes glued to her head for an hour or less, so
is relatively painless). On Friday, we'll see the
neurologist, with whom we'll discuss changes in
anti-convulsant medications and the possibility of
getting another MRI (brain scan requiring several
hours of sedation) in lieu of a less-detailed CT scan
(brief x-ray done while awake) as ordered by the
neurosurgeon. Since Eliza recovered well from the
sedation and ventilation after her surgery, and since
the discovery of hydrocephalus raises questions about
her last MRI (which showed rapid degeneration of the
brain, now perhaps partially attributed to compression
from hydrocephalus instead of atrophy from brain
disease), it seems like it might be useful to have a
new MRI to compare with the last. Whichever test we
decide to have (CT scan or MRI) will be performed in
about six weeks, in order to be sure Eliza's brain has
had plenty of time to decompress completely from the
hydrocephalus.

We are once again in a place of uncertainty. Two
weeks ago, before the discovery of the hydrocephalus,
one thing was finally certain: Eliza was getting
worse, and rapidly at that. Two weeks ago, what the
doctors had feared all along was in fact coming true:
Eliza was dying. Everyone assumed this was due to the
continuation of a fast-moving degenerative brain
disease. With the discovery of Eliza's hydrocephalus,
however, everything is once again up in the air. Will
Eliza continue to get worse, as predicted originally?
Was the degeneration not as bad as the doctors
thought, or in fact, never present at all? If so,
might Eliza stay the same or even improve? No one can
guess, and only time will tell. The doctors say it's
not surprising that we haven't seen positive signs
yet. As usual, though, it's hard to be patient.

"Then Job answered the Lord and said: 'Behold, I am of
small account; what shall I answer you. I lay my hand
on my mouth.'" "I know that you can do all things,
and that no purpose of yours can be thwarted."

"Humble yourselves, therefore, under the mighty hand
of God so that at the proper time he may exalt you,
casting all your anxieties on him, because he cares
for you."

Job 40:3-4; 42:2; 1 Peter 5:6-7

Love,
dixie jax

P.S. Just to re-clarify, "dixie jax" is not a prolific
e-mail writing relative. It is a nickname we have
given ourselves as the southern wing of the Jackson
Family.

Eliza update 5/21 8:30pm

Dear ones,

Eliza is home again! She had a pretty good night,
vomiting only once early this morning, so everyone
agreed she was ready to come home. Since she's been
home, she's been resting, apparently much more
comfortably than she had been in the hospital. We're
relieved to have this stint in the hospital behind us
and are hopeful that we'll all have a good night's
sleep tonight.

Emotionally, we're once again in the uncomfortable
spot of uncertainty. Just when we'd reached the point
of feeling very certain that Eliza was continuing to
get worse--and fast--all due to brain degeneration, we
learn that much of her trouble may well have been due
to this hydrocephalus. No one is ready to venture a
guess at how much, of course, and we'll just have to
wait and see to be certain. But all the doctors are
convinced that the hydrocephalus was certainly having
a significant effect.

So once again, we wait and pray and hope that...what?
Daniele dreamed last night that Eliza (with curly
pigtails) was Luke's age and walking--and complaining
that her head hurt. Is that a premonition of the near
future? of eternity (not with a hurt head!)? We know
Eliza's healing is certain; we just don't know where
and when. Early on, we shared a verse that the Holy
Spirit had brought to us: "He has no fear of bad news;
his heart is steadfast, trusting in the Lord." We ask
that the Spirit would daily renew our hearts with such
trust. We say, with the prophets, "Who knows what the
Lord may do?"

Love,
dixie jax

Eliza update 5/20 8pm

Dear family and friends,

Eliza is, for the most part, recovering well from
surgery. She is amazingly alert--awake and relatively
calm for hours at a time--which has not been the case
in weeks. After much back-and-forth, however, we have
decided that she is not quite ready to come home. She
has had some trouble with vomiting since the surgery,
and since it's hard to work out exactly why
(surgery/anesthesia complication? or just gastric
emptying/neurological disorder/seizure-related?),
she'll spend tonight in the hospital. Sam has swapped
places with me, as I am in desperate need of sleep
after a very long couple of days. Hopefully, she'll
tolerate her feeds better overnight and be ready to
come home tomorrow.

That said, Luke is in bed, so I'm off to sleep,
too...thanks for your prayers.

Love,
us

Eliza update 5/19 9pm

Dear ones,

Eliza entered surgery around 2pm this afternoon. The
procedure took less than 2 hours. The shunt has been
implanted, and the fluid has been drained. The muscle
biopsy was also successful, but the samples obtained
looked unhealthy. I don't know exactly what that
means, and I'm not sure anyone knows what to make of
it, but the samples are frozen and being delivered to
labs in Atlanta and Cleveland for testing.

Eliza and Daniele are spending another night in the
hospital. Hopefully, Eliza will be exhausted enough
to sleep solidly tonight. I know Daniele will have no
trouble doing so if given the opportunity. The
surgeon seemed hopeful that Eliza could come home
tomorrow. This surgery typically requires only an
overnight stay, but Eliza rarely complies with
doctor's orders. We'll see.

There is no indication yet of what effect the drainage
has had on Eliza. Right now, she's just recovering
from the trauma of the afternoon. Daniele did say
that Eliza had her eyes open and wasn't crying, which
hasn't been a very frequent occurrence over the past
few weeks. We'll see.

Psalm 145 says "at the right time." Psalm 69 says "at
an acceptable time." And, of course, Jesus' sacrifice
and resurrection were "at the right time" (Romans
5:6). We will see. God already does see. The good
shepherd.

Love,
jaxon co., southern edition

Eliza update 5/18 11:30pm

Dear family and friends,

At Tuesday's doctor appointment, Eliza's head
circumference was greater than what the curve dictated
it should be. Dr. Baker decided it was worth doing an
ultrasound to check the fluid level in the ventricles
of her brain. So, this morning (Thursday), Eliza
returned to Duke for a head ultrasound. The doctors
discovered a serious case of hydrocephaly (aka
hydrocephalus): The ventricles of Eliza's brain
contained an excess of cerebrospinal fluid. Our
wonderful pediatrician (Dr. Baker, again) re-visited
all the imaging of Eliza's brain and discussed the
situation with any doctor who would answer a page.

By day's end, he recommended that we admit Eliza to
the hospital immediately for surgery tomorrow (Friday)
morning or early afternoon. So, Eliza and mom are
spending the night at the hospital, anticipating the
surgery. During surgery, the surgeon will insert a
small tube extending from Eliza's brain down to a
draining spot within her body (the abdominal cavity).
The tube will not be visible to the naked eye.
Apparently, this surgery is not uncommon.

Interestingly, the excess of fluid may account for the
appearance of extreme brain matter loss in Eliza's
last MRI. It is possible for fluid to smush the brain
matter into a smaller space, thereby creating the
illusion of brain disappearance. We will wait on the
Lord and trust, as we have, but it is hard not to
guess at whether this drainage may help Eliza regain
some function. We just do not know at this point, and
we are reminded of Jesus' loving admonition to address
today's needs today and fret not over tomorrow. So,
we pray for wisdom and skill for the doctors and a
smooth operation and recovery. Eliza will probably
remain in the hospital at least until early next week.

In Jesus Christ, we know God as our Father. And so,
as a small child might wonder at the adroit movements
of his daddy putting together some fabulous new
invention, we also marvel at our heavenly Father as he
works to perform wonderful things. We do not fully
understand the rhyme or reason in each step, but we
are confident that He is much better and knows much
better.

"As high as the heavens are above the earth, so great
is his love for those who fear him." (Psalm 103)

love,
dixie jax

Eliza update 5/15 7pm

Dear all,

Over the past week, Eliza has had a couple more tests.
First, she had an EEG, the test which measures brain
waves and can detect seizures. The result: her brain
waves are abnormal and she had a seizure (which we
already knew). Today, she had a gastric emptying test
to try to figure out why she has had so much trouble
with vomiting. The result: her stomach empties very
slowly (which we already knew). Doctors suspect that
the stomach emptying problem, like the seizures, is
neurological. Translation: terrible things are
happening in Eliza's body because something terrible
(which we cannot identify) is happening in her
brain...which we already knew. So despite endless
hours over the past several days spent in doctors'
offices, we remain where we've been all along, really:
caring for Eliza as best we can.

So that's what we'll do tonight, as every night.
Thanks for your prayers.

Love,
us

Eliza update 5/7 2:30pm

Dear family and friends,

It's been a while since we've sent an email, even
longer since we've responded to so many of your
emails. It's hard to find time even to turn on the
computer, much less get around to emailing these days.

Every time we talk to someone on the phone, see
someone, receive an email, we're asked the same
questions: How is Eliza doing? How are you doing?
How's Luke? Are you getting some rest? Is there
anything we can do? Our instinct is to give the easy
answers: Eliza's doing okay; we're hanging in there;
Luke's a trooper; we get a fair amount of sleep;
really, we don't need anything right now, thanks. But
the honest answers are a little harder to give (and
receive, I imagine), especially in person.

How is Eliza doing? About as expected. The vomiting
has decreased, though not ceased completely, since we
changed her feeding and medication schedules. She is
now fed continuously for twenty hours a day; this
prevents her stomach, which appears to empty very
slowly, from becoming over-full. We still don't know
why her stomach empties so slowly, but she is
scheduled for a gastric emptying test on Monday, May
15. We certainly hope to have a better answer then,
for her sake and for ours. Meanwhile, she has begun
to gain weight again now that she's not vomiting as
much. So that's the good news. On the flipside,
Eliza's seizures have continued to increase. Her
worst day recently was Friday, when she suffered at
least one seizure per hour. Of course, we want to
know why. Is this because all her vomiting has
lowered the level of phenobarbitol, her
antinconvulsant medication, in her blood? (Her level
will be checked Monday afternoon). Is it because her
brain is continuing to degenerate? If so, what does
that mean? It's hard, if not impossible, to know,
harder still NOT to know.

How are we doing? It's hard to explain. I often feel
sort of divided. Day to day, we spend our time trying
to improve Eliza's quality of life: deal with her
vomiting, try to keep her comfortable, work on
swallowing, stretch her muscles to keep her from
getting stiff. All of that can feel very productive
in the short term, and things like sorting out what's
wrong with her stomach could certainly be satisfying
small victories. But there's this nagging, lingering
sense that these are only short-ranging fixes; we
still don't know what's wrong with her brain or how to
stop it. So there are other times--for example, when
Eliza shrieks through her entire physical therapy
session or throws up every time her speech and
occupational therapists work on her swallowing--when
these things feel useless and even detrimental; why
torture her with thumb splints when she'll never use
her thumbs anyhow? Why force her to work on head
control when she'll never hold her head up? Why talk
to her and sing to her when she does not likely
receive any comfort from these things and can't
respond with even a smile? Why hold her when, if
anything, that seems to upset her even more and might
make her vomit? As parents, these are agonizing
questions to ask ourselves. Are we waiting for her to
die or hoping for her to live? Some days it's hard to
know. Certainly, her life as it is doesn't seem like
one we'd want for ourselves, and given that she's made
no progress developmentally in the month she's been
home, it's hard to hold out hope that her life will
improve significantly, if at all.

How's Luke? He's a two-and-a-half-year-old with a new
sibling. He knows she's sick and he knows we're
stressed, but he loves Eliza and only wants to kiss
her, hold her hand, bring her toys, and make her feel
better. Yes, he acts out occasionally (though never
against her), just like any toddler with a new sibling
would. But he continues to impress us with his gentle
spirit and good nature. (He's also gaining ground in
his biblical knowledge. There was a small setback
yesterday when he thought Moses should strike the
Israelites in the forehead with his staff, apparently
incorporating elements of David's remarkable conquest
of Goliath, which is his favorite story).

Are we getting any rest? Some, yes. Eliza usually
falls asleep between 11pm and midnight, so,
theoretically, we should be able to get at least six
hours before Luke gets up and Sam heads to school.
But even sound asleep, Eliza doesn't always rest
quietly; she wakes up to have a seizure, she screams
out in her sleep, she sets off her oxygen alarm. So
those theoretical six hours are diminished a bit and
are always interrupted. So yes, we're tired. Sam has
to get up and go to work; we have to have energy to
play Thomas trains and run around the backyard and
fight toddler eating battles and work on potty
training...not to mention care for an often
inconsolable baby. Yes, we're tired and stretched to
our limit.

Is there anything you can do? You have all done so
much for us already. The meals you've provided, your
care for Luke, the flowers and gifts you've sent, your
financial contributions, and most importantly, your
prayers, have sustained us over the longest three and
half months of our lives. We are more grateful than
we could ever express, and we're so thankful for your
continued offers of help. At this point, really,
there isn't anything we can think of that we need, and
we've learned not to be afraid to ask when we do need
help.

Finally, the heart of the matter: it is hard to endure
under this suffering, to keep going as mother, father,
friend, teacher--all while carrying Eliza's heavy
emotional weight. And, hardest of all, we have felt
at times like God is absent. The Holy Spirit opened a
passage in a profound way to help us understand this.
In Philippians 3, Paul speaks of "being conformed to"
(taking the shape of) Christ's death. The hardest
part of Jesus' suffering and death was his separation
from God the Father. Should it surprise us, then,
that our experience of suffering should not include
some sense of God's absence from us? David laments in
Psalm 69, "I am weary with my crying out; my throat is
parched. My eyes grow dim with waiting for my God."
He, too, wondered at God's apparent disappearance.

The glorious truth, however, is this. Though we may
feel that God is not present, though he may allow us
to feel that for a season, the promise of life in
Christ is that we will never be forsaken. David
continues in Psalm 69, "At an acceptable time, O God,
in the abundance of your steadfast love, answer me in
your faithfulness." As David did not, we have seen
the answer in King David's greater son. Yeshua: The
LORD Saves. And yet, the waiting continues for the
time spoken of in Revelation 21: "He will wipe away
every tear from their eyes, and death shall be no
more, neither shall there be mourning nor crying nor
pain anymore."

Even as you pray for us in our suffering, we pray for
you. May every symptom of your broken humanity be
transformed into a reminder of what awaits all those
who respond to the Spirit's call to repent and accept
the love of God in Jesus Christ.

Love,
Dixie Jax

Eliza update 4/26 9:30pm

Dear family and friends,

We wanted to briefly update you on the day's events.
Eliza spent approximately 7 hours at the hospital with
very little to show for it. The x-ray showed a minor
irregularity in the exit muscle of the stomach and the
pathway leading from the exit to the small intestine.
This means her stomach empties very slowly, which most
likely contributes to her vomiting and reflux. There
is not, however, any immediate fix for this. As of
now, we are feeding her small amounts continuously (24
hrs/day) to keep from over-filling her stomach. If
that doesn't work, we may try a non-milk formula to
see if a milk allergy may be a factor.

Eliza remains somewhat uncomfortable, but she has not
vomited since we started the continuous feeds at 5pm.
We'll keep you posted.

We are exhausted. We have been surrounded by so much
love that limitless energy would not suffice to
express our gratitude. Thank you. Reminds me of
"were the whole realm of nature mine, that were a
present far too small. Love so amazing, so divine,
demands my soul, my life, my all." May it be so.

Love,
dixie jax

Eliza update 4/25 9:30pm

Dear family and friends,

Eliza has had an increasingly difficult time keeping
her milk down. Today, she vomited most of her feeds
out, often in projectile fashion. As a result, she
has not gained weight on schedule. In addition, and
most importantly, Eliza has become very uncomfortable.
The doctors are concerned enough to order an x-ray
for tomorrow morning at 8:30 that will check digestive
function.

The last time we saw these factors, Eliza had
emergency surgery to fix her small intestine. We are
assured that the same problem rarely recurs.
Nevertheless, there seems to be something significant
here.

Please pray. Jesus is Lord.

Love,
dixie jax

Eliza update 4/19 9pm

Dear family and friends,

Woah! What a week. Nothing momentous has happened,
hence the lack of updates, but we have had quite a
struggle to adjust to having Eliza full time. Various
nursing folks have visited to make sure we've got it
all down and to check on Eliza. The consensus is that
she has got a lot of room for development, and we're
going to go forward with physical therapy,
occupational therapy, etc., to see what she can do.
The occupational therapy folks confirmed that Eliza
still has the ability to track objects right, left,
up, and down with her eyes. And Luke's unofficial
tests of her hearing--through his continued attempts
to learn the delicate art of whispering--show that her
ears are well. Eliza remains on a quarter-liter of
oxygen flow, plus a feeding tube directly to her
stomach. Her breathing appears a little easier, and
she has had some success swallowing, but
bottle-feeding is a far distant goal.

So, how are we? Physically, of course, lack of sleep
has been the foremost challenge. Eliza started out
quite confused about the day-night thing, but we have
had a string of nights in which the whole family has
had chunks of solid, continuous sleep. Mentally, we
are just now feeling comfortable and confident with
the feeding machine, oxygen tank, pulse-oximeter
monitor, and the balancing act of keeping all those
and Eliza's round-the-clock medications in order.
(Auntie Gillian the younger was a great help in
charting the medication schedule, in particular. Just
like her dad, for those who know his organizational
prowess.) Emotionally, we must confess to a broad
range of negative emotions: fear, anger, frustration,
sadness, for starters. How to respond in love to this
child who has so upset our lives? Certainly, children
present this problem in many ways at various stages,
but the delight of training up a child, seeing growth
and maturity, more than compensates for the effort.
What of this child who may have too little brain to
know us now--and may be losing the little she has?
Our reflections have not always put us in a positive
frame of mind.

And yet, the Holy Spirit continues to teach us and
comfort us. Through Christ, we are God's children,
and we marvel at how consistently God tests and
refines His children throughout history. Hebrews 11
tells us that Abraham "obeyed and went, even though he
did know where he was going." We, too, obey and go,
barely seeing the way, let alone a destination. We
stand in rebellion with the Israelites on the shore of
the Red Sea, with all worldly powers arrayed against
us, and we receive Moses' rebuke: "The LORD will fight
for you; you need only to be still" (Exodus 14:14).
May we not forfeit the peace of Christ, in whom all
God's promises are yes and amen. We trust Him. Our
hearts will rejoice in Him.

Love,
dixie jax

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Eliza Update 4/13 2pm

Dear family and friends,

Yes, we're still here! It's been a very exhausting few days, and this is the first time we've even had a chance to turn on the computer. So we'll try to fill you in...as long as no one starts crying in the next few minutes!

As would any baby who has lived her whole life in the hospital, Eliza has her days and nights mixed up...or more accurately, has no sense of sleeping for any length of time at once. Even despite sedatives, her first few nights were absolutely exhausting. In addition, her neurological status and inability to be consoled in many of the ways a baby is traditionally consoled make getting her to sleep quite a chore, if not an impossibility. However, as of last night, things have taken a turn for the better. The combination of a more wakeful day and the sedative at night finally did the trick and she got a pretty good night's sleep. So we're feeling a little more human
today.

Eliza has continued to gain weight successfully, and two pediatrician visits, a nurse visit, and a physical therapy visit have all gone well. Luke has been amazingly patient and has been trying really hard to obey all the new rules--don't touch this, don't do that, wash your hands, etc. He's had his moments, but overall, he's excited to have his little sister home and his parents free of constant hospital visits. He is also thoroughly enjoying the company of Sam's sister Auntie Gillian, as are we, since at this point, we can't even imagine doing this without help. Surely things will get easier as Eliza adjusts to being home...we hope!

Suffering is unbearable without hope. For the joy set before him, Hebrews says, Jesus endured the cross. Even in the face of inconceivable torment--the abandonment of God--Jesus, God the Son, committed himself to God the Father in hope. As we care for Eliza, we are confronted by what the doctors have determined is a hopeless situation. Her brain is mostly gone; it can only get worse. At 2 months old, Eliza behaves like a newborn, without the innate skills of eating and breathing. Where will she go from here? We don't know what "quality of life" Eliza will have, or how long she'll have it. Our hopes for this life are dim, at best. The sacrificial love Eliza requires would be unachievable if our hope did not extend beyond this temporary existence. But thanks be to God: Our eternal hope rests on Jesus--his suffering, death, and resurrection. We will love
Eliza now, as long as now lasts, knowing that in Jesus we rest in God's love forever.

May you have a happy and meaningful Easter.

Love,
dixie jax

Eliza Update 4/9 3:30pm

She's home!...and sleeping, so we're going to do the same while we have the chance!

Praise God!
Love,
us

Eliza update 4/8 9:30pm

Dear family and friends,

Sam's stay at the Hotel Duke ICN was pretty disastrous. We did not finish our orientation to the
oxygen tank with the respiration tech until midnight. Daniele left at that point; Eliza started her scream party. Both Eliza and dad managed to catch a couple hours of sleep total, but it was a rough night. Eliza has been catching up on her sleep all day. Daniele has begun what seems to be a better night tonight. We are using a sedative to help her sleep tonight so that she can start getting her days and nights back to some degree of normalcy. The docs report that neurologically challenged babies have a much harder time regaining composure when upset, hence the medication.

We have continued getting everything in place for Eliza's homecoming tomorrow. We share the joy that so many of you have expressed at this prospect. This joy is not unmingled with other feelings. How did it happen that we had to wait more than 2 months to bring our baby home? And, what is the condition of this baby? How long will Eliza be with us? And what will she be while she is with us? We don't know. Doubt hangs over our heads.

How precious, then, to celebrate Passover this year. Doubt may hang over our heads, but the blood of Jesus, our passover lamb, adorns our doorposts. Sorrow and sighing will flee away. They cannot touch us. Where, o death, is your sting? Your boasts ring hollow in this home, with Jesus as its master.

Hosanna! Blessed is He who comes in the name of the Lord!

Love,
Sam, Daniele, Luke, and Eliza (homecoming queen!)

Eliza update 4/7 8:30pm

Dear all,

Things are rolling, and Eliza is on track to come home on Sunday! Sam's off to spend the night at the hospital tonight, and I'll join him for a few hours shortly. Then I'm on for tomorrow night. We have an oxygen tank in our house, and more tanks and a feeding pump awaiting us at the hospital. Follow-up visits to all sorts of docs and therapists are already scheduled. So we're all but ready to go--what a relief!

Other than that, there's not much news to report today...and there's much to get done, so I'm off!

Love,
us

Eliza update 4/6 10pm

Dear family and friends,

As this will likely be our last night of solid sleep for who knows how long, we're eager to get to bed. But here are the main news items from today:

Eliza is back on oxygen and will almost certainly come home with it, though it will hopefully be minimal and perhaps temporary.
*She has gained weight again today--50 gms.
*She was sedated this afternoon, as her sleepless nights (and days) have continued. Since awakening from that sedation, she is much calmer and happier.
*She may well come home with this sedative to be used at our discretion (for extremely fussy nights, etc.)
*Reflux seems to be improving--no vomiting today.
*She swallowed 7.5 mls today without a problem.

We're still hopeful to get her home Sunday; if not, she'll almost surely be home early next week. To that end, we will spend the next two nights (most likely, one of us at a time) "rooming in" at the hospital--that is, being completely in charge of her care through the night in a hospital room near the nursery.

In other news, Luke got a new beanbag chair today to replace the rocker he will hand down to Eliza; he was eager to share his excitement for the attached photo. What a ham. We've been talking to him about being a big brother to a sick baby sister; he is excited to finally fill the role, with Jesus' help.

"The Lord will fulfill his purpose for me; your steadfast love, O Lord, endures forever" Psalm 138:8.

Love,
us

Eliza update 4/5 10:30pm

As it's already 10:30 and this has been a full, exhausting day, this email will be brief.

We met today with the docs in charge of Eliza's care, both currently and once she is discharged, to discuss plans for getting her home. We're aiming for this Sunday, but there's much to accomplish, so that's the best-case scenario. Since Eliza doesn't seem to like to follow plans, no one wants to make any promises just yet.

Before Eliza can come home, a few things must happen:
1) determine the reason for her vomiting (reflux? neurological?) and get it under control,
2) decide if she'll be able to continue long-term without the cannula or if she will need supplemental oxygen/air flow, and/or breathing treatments via nebulizer,
3)get her to sleep with some regularity,
4) get another EEG,
5) educate us on equipment use, etc.

If all goes well, this can all be accomplished this week, but only time (and Eliza) will tell what she's going to need to get home. We'll just keep praying for patience and for God to work out the myriad details.

I have attached a picture taken today of the three of us at the hospital, the first we have of Eliza with nothing taped to her face since the day after she was born! You'll notice Sam isn't looking his sharpest; blame it on having already endured several hours of Eliza's crying. I, on the other hand, was arriving fresh for the battle...

Love,
us

Eliza update 4/4 8pm

Eliza persists in refusing to conform to anyone's
expectations.

First, the negative surprise: she continues to throw
up with most of her feedings, and no one is quite sure
why. Hopefully, it's just reflux, and a change in
feeding schedule and reflux meds will help make her
more comfortable (she cries a lot and sleeps little
these days) and allow her to keep her feedings down.
This remains to be seen.

On the flipside, when the pulmonologists (lung docs)
came to see Eliza today and turned off the flow to her
nasal cannula so they could listen to her breathing,
Eliza surprised everyone by breathing fine on her own!
This happened late this afternoon, so the respiratory
therapist decided that, although this isn't the
gradual weaning plan they had anticipated, they would
give Eliza a chance to prove that she can continue
breathing without support. As of 6:30pm, she was
still breathing a little hard but holding her own,
even through some reflux-induced crying fits.

What an enigma Eliza is! We're grateful to know that
God has a plan for Eliza, since the plans made by
medical folks never seem to quite pan out...!

Love,
us

Eliza update 4/3 10:30pm

Dear family and friends,

The focus remains on Eliza's stomach. She managed to
tolerate her feeds enough to gain another 70 grams
tonight after a 50-gram gain last night.
Nevertheless, she appears very uncomfortable, so we're
still searching for some explanation and solution.
Clearly, the increased volume of milk correlates with
the discomfort, but is this due to reflux or lingering
pain from the surgery 8 days ago? Or, and this seems
to be the shadow haunting every complication Eliza
encounters, does this stem from neurological
dysfunction? The question looms: When will the brain
damage make itself felt in an obvious way?

We are weary. We are becoming more impatient to have
Eliza home. This could be as early as Friday, but it
may have to wait til next week. As we face the
threatening darkness of ignorance and helplessness, we
celebrate our God, to whom "even the darkness is not
dark...the night is bright as the day" (Psalm 139).
We take up with weak arms the shield of Faith. The
circumstances change or stagnate; God alone is
constant.

Jesus is Lord.

Love,
dixie jax

Eliza update 4/2 9pm

Dear all,

As of today, we're on a mission: get Eliza out of the
hospital. To that end, we're going to do whatever we
can to make that happen as soon as possible. Based on
what we have seen over the past few days, that will
likely mean not weaning Eliza off the oxygen before
she comes home, though we will be able to continue
working on weaning her ourselves. She may also need
to come home on more gradual feedings than we might
have hoped, as her stomach is still taking some time
to adjust to the volume of milk she needs (reflux? we
still aren't sure), but again, we'll be able to work
on shortening her feedings once she comes home.

What this means, then, is that there's really just one
thing for Eliza to do before they let her go: gain
weight. The doctors and nurses are trying to figure
out the best way to give her enough calories to get
her growing (which they have not yet been able to do
since the surgery); once she shows significant weight
gain consistently, we should, God willing, be able to
bring her home. This could still happen late next
week.

"For the Lord will not cast off forever, but, though
He cause grief, He will have compassion according to
the abundance of His steadfast love; for He does not
willingly afflict or grieve the children of men"
Lamentations 3:31-33. Jesus is Lord.

Love,
dixie jax (The "dixie" part, for those of you who
have wondered and/or asked, refers to the fact that
we're the southern branch of our nearly exclusively
northern families...though we're always recruiting!)

eliza update 4/1 2pm

Dear family and friends,

After yesterday's fussiness, Eliza had extended
periods of sleep last night and seems to be tolerating
a high volume of breastmilk entering her stomach for
her initial feeds today. There will be no swallow
testing over the weekend; we'll resume Monday. Eliza
currently has a 2-liter flow of humidified room air
entering through her nasal cannula (pronounced:
KAN-yuh-luh, for those giving oral reports). Her
respiration stats are good, but the doctors do not
plan to wean any of that flow until tomorrow.

We're still looking at a tentative homecoming date of
next weekend. Eliza must tolerate her increased feeds
and make consistent weight gain (1/2 or 1 oz per day;
n.b.: 1 oz = 30 grams) to earn her release.

"If it had not been the Lord who was on our side--let
Israel now say--if it had not been the Lord who was on
our side...then the flood would have swept us away,
the torrent would have gone over us; then over us
would have gone the raging waters...We have escaped
like a bird from the snare of the fowlers; the snare
is broken, and we have escaped! Our help is in the
name of the Lord, who made heaven and earth" (from
Psalm 124).

Jesus is Lord. He has received the "raging waters" on
his own head that we might be borne up by the tide of
God's love. And we have been. Thank you for your
prayers. All glory and praise to God the Father
through Jesus the Son by the might of the Holy Spirit.

Love,
dixie jax

Eliza update 3/31 8pm

Dear family and friends,

If nothing else, Eliza is certainly teaching us about
patience.

Today, the nurse practitioner mentioned to Sam that if
Eliza spends a few extra days in the hospital, they
may be able to wean her off the oxygen entirely before
she comes home. This would clearly make life easier
for all of us once she's here, but it's hard to
imagine choosing to leave her there a few more days.
Nothing is set in stone, though, as she's not ready to
go yet anyhow.

In other news, Eliza has lately been having periods of
what the nurses are calling "inconsolable" crying and
fussiness, which prevent her from sleeping for any
significant length of time. Whenever we're at the
hospital, however, she seems relatively easily
consoled by simply being held. The doctors are trying
to find a medical reason for this crying--infection,
reflux, neurological problem--and while we're grateful
for their efforts, it's hard not to wonder if Eliza
isn't just acting like your average two-month-old who
wants to be held by her parents. But again, we'll
just be patient and try to be there to care for her as
much as we can.

Love,
us

Eliza update 3/30 8pm

Dear all,

Eliza began her swallowing practice again today and
managed 4 ml. without any trouble. Other than that,
she's had a quiet day, for which we're thankful!

Love,
us

Eliza update 3/29 8:30pm

Eliza is two months old today! What a long, strange
trip it's been...

Eliza celebrated her two-month birthday by drinking
some milk through her g-tube for the first time this
morning. They have started with small amounts of milk
and will gradually work her up to full feeds over the
next several days. She is being fed every three
hours, and has been doing very well with it so far.
It's remarkable how simple it is to feed a baby with a
g-tube; if only all babies had one! A feeding
involves simply opening a plastic button on her
stomach, inserting a small tube hooked up to a syringe
of milk, and turning on a pump. When the milk is
gone, we detach the tube and close the button and
she's good to go for three hours. This doesn't mean
she won't be able to continue working on swallowing;
once we're sure her stomach is working well, we'll get
started on that again, too.

For the first time since she became so uncomfortable
last week due to her intestinal problems, Eliza is
again having periods of content wakefulness; for over
an hour this afternoon while I held her, she was awake
and looking around contentedly. Over the past week,
she cried and fussed almost any time she was awake,
which we now know was because she was in quite a bit
of pain. So it's good to see her back to her old
self. Although no one wants to make any definite
plans (since Eliza likes to spring things on us just
when we least expect them!), God willing, she'll be
ready to come home by the end of next week.

Love,
dixie jax

Eliza update 3/28 8pm

Dear family and friends,

Not much to report tonight: Eliza is still off the ventilator, and though she's still breathing a little hard, is doing fine back on the nasal cannula. She is no longer on morphine, only Tylenol, and seems much more comfortable than she did yesterday. Apparently, she's been wide awake and watching her mobile intently this evening...blind, indeed!

Love,
us

Eliza update 3/27 1:30pm

Dear family and friends,

Eliza was extubated (taken off the respirator) today around 11am. As of 1:30, she is still breathing a little hard but is doing okay. She seems to be suffering some pain from the surgery (as is to be expected), so she is on a low dose of morphine. Hopefully, she'll soon get more comfortable and settle down so she can breathe easier. She'll stay on clear intravenous fluids until her digestive system gets working again (a few days to a week), at which point she'll slowly begin being fed through the g-tube. For now, the plan is to keep her comfortable and watch her
breathing carefully.

Thanks for your prayers.
Love,
us

Eliza update 3/26 9pm

Dear ones,

Just when we thought things were calming down, Eliza decided she wanted to keep things interesting and threw everyone for another loop.

Even after all the changes made last night, Eliza continued projectile vomiting and appeared to be in great discomfort. This afternoon, an abdominal x-ray showed that she had a condition called malrotation of the bowel; basically, when her intestines first formed at only a few weeks gestation, they twisted in a way they shouldn't have. This created a blockage, which, if not corrected, would be fatal. So Eliza underwent surgery this afternoon to correct that problem.

Since she was under anesthesia and back on the ventilator anyhow, the doctors decided to go ahead and do the muscle biopsy that we had postponed weeks ago (checking for mitochondrial disorders that could cause seizures) as well as insert a gastrostomy tube. This is a feeding tube that goes directly into Eliza's stomach; she has a small plastic cap on her belly into which milk can be pumped directly. This will eliminate the need for a feeding tube through her nose and should greatly simplify feedings once she gets home.

As of 8:30pm, Eliza was still completely sedated and her muscles completely paralyzed. She will hopefully begin to wake up in the next several hours; as long as she is not uncomfortable, the doctors will only give her minimal amounts of morphine and will try not to sedate her too much, so that she can once again begin the battle to get off the ventilator. The sooner she's off, the better, seems to be the opinion. It sounds like it will be a balancing act between just enough medication to keep her comfortable but not too much which would keep her sedated.

Until her intestines recover from the surgery and start working again (probably five to seven days, we're told), Eliza will receive only intravenous fluids and no feedings. Once her intestines start working, she will begin slowly receiving breastmilk, now through the g-tube in her stomach. Realistically, then, Eliza's homecoming has been significantly delayed; the timing all depends on how quickly she gets off the ventilator and how well she eventually tolerates feedings. The neonatologist said today that she hopes she'll be home within a month.

What a day. As Sam has been singing to Eliza,
"Leaning, leaning, safe and secure from all alarms;
leaning, leaning, leaning on the everlasting arms.
Oh, what fellowship, oh, what joy divine; leaning on
the everlasting arms."

Love,
Daniele, Sam, Luke, and Eliza

Eliza update 3/25 9pm

Dear family and friends,

As I sat and enjoyed Eliza this morning, portions of 1 Corinthians 13 ran through my head: "now we know in part, then in full"; "now we see but a dim reflection, then face to face." Our rich experience of God's goodness, the abundance of His love shown at the cross. These are only partial and dim compared to what "no eye has seen nor ear heard nor mind imagined." Come, Lord Jesus. Let us repent and give Him the glory due His name.

Eliza has had a very rough 24 hours. She slept very little last night and not much more through the day today. This appears to be the result of a change in her feeding schedule. Eliza had been receiving continuous feeds. In other words, there was a constant flow of breastmilk (with formula mixed in to increase the calories) going through the tube that goes through Eliza's nose and empties in her stomach. Over this week, the doctors have gradually adjusted this plan so that, as of yesterday (Friday), Eliza was receiving one hour of feeding, then two hours off. Eliza's stomach could not handle the volume, so she began showing signs of discomfort and reflux, including voluminous spit-ups. After a day of trying to let her digestive system work this out, we have returned to square one. Starting tonight, Eliza will go back to continuous feeds, and the nurses will not mix in the formula, in case that has caused irritation. The next step will depend on how Eliza does.

No doubt some of Eliza's discomfort came by way of the EEG (brain wave detector) machine whose electrodes were glued to Eliza's head for 18 hours. Thankfully, the EEG showed no seizure activity. As Eliza's first doctor insisted, this could not happen without a miracle. Jesus is Lord.

In breathing news, Eliza's lungs continue to strengthen. She remains on the nasal cannula but
without much oxygen support flowing through it. The plan remains for her to go home with it, mostly because it helps her lungs stay inflated.

Luke has recently become quite interested in the baby doll granma 'cinda (Sam's mom) gave him quite some time ago. Daniele has been teaching him how to swaddle his baby. We trust God is preparing him for Eliza's imminent homecoming!

Love,
dixie jax

Eliza update 3/24 8pm

Dear all,

I was in charge of the finger feeding today, and Eliza had another successful swallowing attempt: 6 ml. with strong, nutritive sucks and without choking or getting upset at all. The speech and occupational therapists are very excited by this progress. Hopefully, Eliza will be ready for a swallow study before she leaves the hospital; this involves swallowing barium while under x-ray to make sure she's not silently aspirating what she's drinking. This study could also be done on an outpatient basis if she's not ready before she leaves, which is still on track to happen soon,
hopefully around the end of next week.

Eliza is currently having another EEG to see if anything has changed in her brain activity. This will run all night. I just spoke to Sam, who is at the hospital, and he said it looks about the same as before: nothing that looks like a seizure, but still spiky, abnormal waves. As usual, we'll have to wait for the official report until tomorrow, but Sam's read tends to be pretty reliable. Eliza also had her normal newborn hearing screen today; one ear passed, and one ear failed, so she'll need to have a follow-up test, again maybe before she leaves the hospital or maybe on an outpatient basis.

That's all the news for tonight...

Love,
Daniele, Sam, Luke, Eliza

eliza update 3/23 8:30pm

Dear family and friends,

May the glory of the Lord endure forever; may the Lord rejoice in His works, who looks on the earth and it trembles, who touches the mountains and they smoke! I will sing to the Lord as long as I live; I will sing praise to my God while I have being. May my meditation be pleasing to Him, for I rejoice in the Lord. (Psalm 104:31-34)

As we have walked this road, through good and bad, we have tried to give glory to God through Jesus, depending on the Spirit's power. We cannot and would not attempt to assess our success. We can say, however, that God is fully worthy of much more than we can ever offer. "Bless the Lord, o my soul, and forget not all his benefits, who forgives all your iniquity, who heals all your diseases, who redeems your life from the pit, who crowns you with steadfast love and mercy, who satisfies you with good so that your youth is renewed like the eagle's" (Psalm 103:2-5)

The last couple days have truly been renewing and rejuvenating. Again, today, Eliza has successfully swallowed a little milk. This time she managed 5 milliliters (up from 3 yesterday) with more ease, comfort, and interest than yesterday. Eliza also gained an additional 30 grams as of last night, not much, but a positive sign for her nutrition. She has not seemed to mind having the food going to her stomach rather than the small intestine. And, as of yesterday, Eliza was off the breathing tube for a week! Not bad for a baby with a quarter of a brain. We will wait on the Lord.

Oh, yeah, she also pooped all over the nurse today.
(Translation: Let me go home!)

Love,
dixie jax

Eliza update 3/22 2pm

The things we get excited about these days truly amaze me. First peeing, then spitting up... today, it's swallowing!

After two days of speech and occupational therapists trying and failing to get Eliza to swallow even a drop of water, today, Eliza sucked stronger than ever and managed to swallow three milliliters of milk! It was slow, hard work for her (and the three of us who needed all of our hands to make it happen!), and it clearly tired her out, but she did it with minimal choking and even maintained her oxygen saturations fairly well (a big challenge for her whenever she's at all upset, much less choking a little). So this is big news and great progress, if painstakingly slow.

Meanwhile, Eliza has plenty of spunk in her, and now that she's getting ready to come home, has decided to mix up her nights and days; she apparently drove her night nurse pretty crazy last night. So we'll just cherish our relatively uninterrupted hours of sleep now in anticipation of upcoming schedule changes!

We'll email later if there's anything else to report.

Love,
Daniele, Sam, Luke, and Eliza

Eliza update 3/21 8pm

Dear ones,

Eliza is doing well tonight. She gained 15 grams last night, and she appears to be breathing easier every day. Her feeding tube was pulled back from her intestine to her stomach this afternoon, and the doctors are watching to see if reflux will again be a problem. So far, her nurse reports that she seems to have suffered a few uncomfortable periods, but overall she's doing well and hasn't spit up yet.

Again today, Eliza started having some "suspicious" eye activity: seizures? just strange neurological behavior? We may never know. Otherwise, though, everything else remains the same; she's still requiring some oxygen, and she still was unable to swallow at all for the speech therapist who worked with her today. They're not giving up on either the possibility of weaning her down on the oxygen or of her being able to swallow a little, though. We'll just keep trying. When we get impatient, we have to remind ourselves that just one week ago, it was unclear how many hours Eliza would be able to remain off the ventilator; six days later, there's no question she can breathe on her own, and well, too! Who knows what she'll acheive in another week? God
does, and we continue to trust Him completely.

Love,
Daniele, Sam, Luke, and Eliza

eliza update 3/20 8:30pm

Dear family and friends,

Last night (Sunday), Eliza had increased her girth by 110 grams. For those of you who have witnessed the prodigious enlargement of Jackson babies, this should come as no surprise. In Eliza's case, this is a good sign both because it means good nutrition and good neurological function (Brain: "Grow body; help those lungs!"). Eliza also had a wee bit of a smile for dad today. It may be a while before we catch that on camera, but it was an encouraging--and developmentally appropriate--sight.

Some new doctors came on the scene to test Eliza's sucking and swallowing. Eliza passed the first test by sucking on a pacifier without having it held in for her. When given a milliliter of water, however, she immediately coughed it out. This is no surprise given the trauma her airway has experienced. These doctors will return daily over this week to continue testing. We shall see.

During communion at church yesterday, Daniele found herself stuck on Jesus Christ's words: "Take and drink." As we continue on this long and often exhausting path, we are mindful that we are drinking Christ's cup of sacrifice. We do pray as Jesus did that this particular cup might pass, but we also pray for confidence and strength to ask with Jesus that God's will would be done. Moreover, we rejoice that Jesus walks with us as one who knows from experience. And, as God's love is "shed abroad in our hearts," we know our hope is sure.

Two weeks and counting...Please pray for peace in our hearts as we anticipate all the factors involved in Eliza's homecoming.

Love,
dixie jax

P.S. Thank you for all the compliments on Eliza's looks. We are now accepting down payments on dowries.

Eliza update 3/19 9pm

Dear all,

Not much is new, except that we were told today that Eliza will likely come home in two weeks or less. Of course, we're thrilled at this prospect; our little girl will finally get home! On another level, though, we're also aware that this new eagerness to get her out of the hospital probably means a few things: first, she doesn't have time to waste, which is a fact we'd like to forget but obviously never can; and second, it's looking less and less likely that she'll be able to live without the nasal cannula and feeding tube, so there's no real reason to keep her in the hospital if she has progressed as far as she can. Looks like we will have lots more to learn about working her machines once she gets home...

I'm feeling particularly talked (and emailed) out tonight, and Sam's at the hospital giving Eliza her bath, so that's all for us tonight.

Love,
us

Eliza update 3/18 8:30pm

Dear family and friends,

They say a picture is worth a thousand words, and
Eliza finally decided to cooperate and pose for a
picture for me! (She's going to learn one way or
another to deal with her paparazzi-wannabe mama).
I'll describe what you see in the picture so you have
a better idea of what's going on with Eliza.

The yellow tube you see going into her nose is called
a duodenal tube. That's the feeding tube that
currently bypasses her stomach and delivers
formula-fortified breastmilk directly to her
intestines. In the near future, the doctors hope to
pull that tube back into her stomach where it used to
be before she began suffering from reflux. Some good
news today: Eliza spat up! Why is this good news?
Because she was able to spit up without aspirating the
milk into her lungs. If she can guard her
airway--that is, spit up without choking and
compromising her breathing--she has a better chance of
eventually being able to feed orally. Of course, this
remains to be seen, as there are more hurdles to clear
before we can try that. The milk she gets is
formula-fortified because since Eliza was extubated
she has again begun to lose weight. This is probably
a result of the increased effort she needs to make to
breathe; hopefully, increasing the calorie content of
the milk will help her start gaining weight again so
she can keep up her strength.

The clear tube around her face (and taped to her
cheeks) is the nasal cannula. This delivers a slight
flow of oxygenated air through Eliza's nose. She is
currently breathing well (over three days off the
ventilator now!) with a minimal level of flow and
relatively low oxygen content. She still needs a
little help keeping her oxygen level up when she cries
or is upset, but hopefully as she gets stronger she'll
be able to do that without the cannula. If necessary,
she could come home with this cannula and an oxygen
tank.

The neon pink straps around her wrists were provided
by her occupational therapist. Eliza has indwelling
thumbs (tucked inside her fists), which have tightened
significantly due to lack of use over the past seven
weeks. She wears these soft splints on and off during
the day to help correct this problem. Hopefully, the
splints will help loosen those muscles a bit.

The most important thing you can see in this picture:
Eliza is really cute! As I snuggled with her for a
few hours today, I found myself wishing you all could
do the same. It's easy not to worry about what may or
may not happen tomorrow when you can hold her and
enjoy her and see her for what a blessing she truly
is. People keep asking how we're REALLY doing; we're
REALLY loving the beautiful baby God gave us and
enjoying every moment with her. "Therefore do not be
anxious about tomorrow, for tomorrow will be anxious
for itself. Sufficient for the day is its own
trouble" (Matthew 6:34). And its own joy, too, we
might add. Strange and inexplicable things may be
happening in Eliza's brain, but we've decided that
despite all that, she's just a sweet little baby, on
loan to us for a time to cuddle and love and care for
as best we can. And we're going to enjoy every minute
of it.

So, after all, maybe the saying goes, "A picture
REQUIRES a thousand words"...

Love,
Daniele, Sam, Luke, and Eliza

Eliza update 3/17 9pm

Dear ones,

More than two days later, and Eliza is still breathing
on her own! Praise God! In fact, her chest x-ray
this morning looked even better than yesterday's; her
lungs seem more inflated, which is a good sign that
she is not suffering collapse like she has in the
past. Eliza is requiring less oxygen (through the
hood and/or cannula) than she was yesterday, and she
seems to be having fewer episodes of tachypnea (rapid
breathing) today as well. She also seems less upset
today than she was yesterday, which hopefully means
that her throat is less sore and the caffeine she's
still being given is less agitating. If we can keep
her calm, she's less likely to tire out.

Unfortunately, due to the increased work of breathing,
Eliza has consistently lost weight over the past
several days. To keep her energy up, the doctors are
adding more formula powder to the breastmilk she's
being given to increase its calorie content.
Hopefully, this will do the trick until she can become
more relaxed about her breathing.

Meanwhile, Eliza is quite pleased with her new-found
ability to suck on a pacifier, which is good news for
a few reasons. First, it's clear that her sucking
reflex is still present and that she has not developed
an aversion to oral stimulation as some babies who are
intubated for a long time do. Second, she will
hopefully learn to associate the pacifier with
self-soothing; this way, she won't waste as much
energy crying and trying to settle down.

We're grateful for all your expressions of sympathy
over the past several days. Our emotions have run the
gamut: sadness, fear, anger, but mostly joy. No,
Eliza isn't the baby we imagined we'd have two months
ago, but we're grateful for who she is and the
blessing she is to so many people around her. We're
eager to get her home so you all can see her and enjoy
her, too. She really is so cute, and when she's
snuggled up in our arms, it's easy to forget the
challenges she's facing and just focus on our sweet
baby. If my camera battery hadn't died at the
hospital today, I'd have photos to send, but I promise
to take some soon.

Love,
us

Eliza update 3/16 8pm

Dear friends and family,

Sam spent most of last (Wednesday) night in the
hospital holding and consoling Eliza as best he could.
Most times, he was just invoking and singing the name
of Jesus, asking Him to make himself known in that
room. By morning, Eliza had ditched the very
irritating nasal C-PAP and had tried out a nasal
canulla, which delivers mostly oxygen and a bit of
pressure, and had settled for an oxygen hood, which is
a clear plastic box with oxygen-saturated air that
covers her entire body. During the day today, Eliza
has alternated between the oxygen hood, which may be
the most comfortable, and the nasal canulla, which
allows mom and dad to hold her. She has held her own
off of the breathing machine but has appeared to
struggle enough that it is still unclear whether this
extubation will be successful. Nevertheless, we're
thankful that Eliza has had at least this much of a
break from the tube. We are praying that she would be
able to relax into a healthy breathing routine--it's
amazing what we the healthy lung-endowed take for
granted.

We had a conference with the doctors and neurologists
today. They confirmed the ill tidings of yesterday,
with a little more detail. Eliza has lost 2/3 to 3/4
of the mass of the "thinking part" of her brain. The
positive "baby" signs that we have seen require only a
relatively reliable brain stem. Based on this
finding, the doctors prognosticate that Eliza will not
make it through her first year. If she does, she will
be incapable of spontaneous physical motion, vision,
and regular body function overall. So say the
doctors. Because Eliza may only survive through
dependence on machines, we have been advised to
consider end-of-life decisions. Please pray that God
would unite us in decisions that honor Him.

God made all things good. Sin fouled and fouls them
up. Our experience has led us to hate sin more than
ever: the sin that calls all of us to follow our own
way, the sin that devours Eliza's brain cells. We
praise God all the more for making all things new
through Jesus. Daniele had an image this morning of
God waiting to hold Eliza. Then, as we left the
hospital, the bells at the VA hospital next door
chimed "How Firm a Foundation": "Fear not, I am with
thee, o be not dismayed, for I am thy God and will
still give thee aid. I'll strengthen thee, help thee,
and cause thee to stand, upheld by my righteous,
omnipotent hand." His Love surrounds us.

The doctors repeated time and again that they had no
"good news" for us. It was a privilege to share with
them that we had brought the "good news" to the
conference: Jesus is Lord! Thank you for your prayers
for the strength to see and express this truth
clearly.

"Therefore God has highly exalted him and bestowed on
him the name that is above every name, so that at the
name of Jesus every knee should bow, in heaven and on
earth and under the earth, and every tongue confess
that Jesus Christ is Lord, to the glory of God the
Father" (Philippians 2:10-11). May God grant that our
knees and tongues do so willingly, constantly.

Love,
Sam, Daniele, Luke, and Eliza

Eliza update 3/15 9pm

"Why are you cast down, O my soul, and why are you in
turmoil within me? Hope in God; for I shall again
praise Him, my salvation and my God" (Psalm 42:11).

Dear ones,

Tonight's email is one of the most difficult I've had
to write yet, so please forgive its brevity and
sterility.

First, the good news: Eliza was extubated around 3pm
today and is doing well so far. Her furor over the
CPAP threatened for the first few hours to jeopardize
the extubation, as she was crying so hard and so
inconsolably that she was in danger of tiring out
quickly. But once I held her for a while, she calmed
down and is now sleeping in her bed, with Sam waiting
nearby to hold her again should she wake up and need
calming. If this turns out to be the case, we'll take
turns sitting with her at the hospital overnight,
until she hopefully gets used to the CPAP.

Unfortunately, all of tonight's news isn't as good.
It appears that Eliza has begun having some seizures
again, so she is back on the phenobarbital. The risks
posed by seizures (potentially compromising her
breathing) are just too great when she has just been
extubated, and, due to unfortunate MRI results, the
main risk of the drug (delayed brain development) is
less of a concern today. These MRI results show that,
although her body and skull have continued to grow,
Eliza's brain has not; in fact, it appears to be
continuing to shrink. We'll know more once all the
neurologists have a conference tomorrow, but the
neonatologist has cautioned us that whatever they have
to say will not be good. A person can't live with a
disappearing brain, and since no one knows what is
causing the shrinkage, at this point only a miracle
will stop it. And so, as we have been all along, we
continue to pray for a miracle and trust that God
knows what is best for Eliza.

We covet your prayers tonight.

Love,
Daniele, Sam, Luke, and Eliza