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