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

Eliza update 3/14 8pm

Dear family and friends,

Eliza had her MRI this afternoon, and since it ended
up happening so late in the day, the neurologists did
not get to look at it before they left. We expect
that they will look at it in the morning and let us
know what they see then.

As for any concerns about Eliza's sedation lingering
and endangering her chances of being extubated
tomorrow, those appear to have been completely
unfounded. In fact, Eliza began waking up during the
scan and had to be given a second dose of the
sedative. By the time she was wheeled out of the
scan, she was already wide awake (and hopping mad, to
boot!). When she got back to her room and I got her
out of bed, she remained awake, content and very
alert. She was still awake an hour and a half later
when I left. Apparently, her metabolism is amazingly
fast (a sign that her liver is now functioning very
well), and she's burning through medication and food
much more quickly than would be expected.

Assuming all goes well tonight and tomorrow morning,
Eliza is still on track to be extubated tomorrow,
probably around mid-day. For perhaps the first time
during this whole ordeal, various medical folks have
been warning us to expect Eliza to suffer significant
discomfort (from the CPAP, as we mentioned last
night). Please join us in praying confidently to "the
God and Father of our Lord Jesus Christ, the Father of
mercies and God of all comfort, who comforts us in all
our affliction" (2Cor 1:3).

Love,
dixie jax

Eliza update 3/13 8pm

Dear family and friends,

Eliza has a big week ahead of her, and we covet your prayers. First, her dose of phenobarbital (one of two remaining anticonvulsants) will be discontinued as of tonight. The level in her body has been below the therapeutic (effective) level for over a week now, and she's showing no signs of redeveloping seizure activity, so due to the possible side effects (slight sedation, brain development delay), we and the doctors have calculated the risks and decided to see how she does without the drug. The continued abnormality of her brain activity on the EEG does indicate that there is some risk of the recurrence of seizures, but at this point, the costs of using the drug seem to outweighthe possible benefits.

Second, Eliza will have her fourth MRI tomorrow, most likely early in the morning. As it has been a month since the last scan, the doctors want to have another look at her brain; it is easiest to do that while she is still on the respirator, as she will need to be sedated for the scan and therefore runs the risk of breathing difficulties. The drug they will use to sedate her should wear off quickly after the scan, and should not compromise her increasing strength and awareness. All the doctors seem hopeful that the brain will look no worse--and perhaps even better--than it did a month ago. We should know by the end of the day what the doctors have seen.

Thirdly, Eliza is still on track to be extubated (removed from the respirator) again this Wednesday. The neonatologist seems confident that, a) the last attempt failed due to Eliza's lack of energy and strength, and b) she's significantly stronger now due to consistent weight gain over the past week (70 grams just yesterday!). But things will be done a little differently this time. Eliza will be given caffeine, which, as a stimulant, will encourage her to breathe faster and stronger (and don't we all need a little caffeine to get us going now and then?) and will strengthen her diaphragm. She will also be put onC-PAP (continuous positive airway pressure), which is a small two-pronged tube in her nose that provides pressure support like the ventilator does (keeping her lungs from collapsing like last time) but does not provide breaths. We're told that she'll likely hate this (who wants air blown up her nose?), and that some babies are so upset by it that it defeats its own purpose, but they hope to keep it in as long as a week if they can, just to give Eliza the best chance they can to get used to breathing on her own.

Meanwhile, if you're tiring of receiving our emails or of forwarding them on to others, there's now a new way to get our Eliza updates: she has a blog (yikes! aren't we supposed to worry about our daughters having these things?). All of our email updates will be available at http://dixiejax.blogspot.com/ . Please feel free to let us know if you want us to take your name off our email list now that our updates are available elsewhere.

"He will have no fear of bad news; his heart is steadfast, trusting in the Lord." Psalm 112:7.

Love,
us

Eliza update 3/12 8pm

Praise God--Eliza is six weeks old today! There certainly were days there when we wondered if she'd reach this day, and we're so grateful to God for sustaining her (and us) for so long.

It's been a slow-news weekend, which is generally good news. Eliza continues to do well as she is slowly weaned from the respirator, and she is steadily gaining weight, hopefully building up strength for an extubation attempt late next week.

Meanwhile, the mama in me decided to reclaim my baby: she's now enjoying a mobile above her crib (which she watches wide-eyed), a white noise machine while she's sleeping (to drown out all the bells and whistles going off around her all the time--who can rest and build up strength with all that noise?), and a bouncy seat for a little semi-upright playtime. She seems to really enjoy all three. I also helped give her a real tub bath yesterday; she didn't like that quite as much! I managed to enjoy it a little more than she did, although I look forward to doing it without the breathing tube getting in the way and stressing me out!

Thanks for your continued prayers and words of encouragement.

Love,
us

Eliza update 3/11 2pm

Loved ones,

In the beginning, it was not suffering that God called "good." Nevertheless, it is only through suffering,the suffering of Jesus Christ, that God makes and will make each and all of creation "good" again. Through Isaiah, God calls the Messiah a "man of sorrows and acquainted with grief." It was only through the grief of the Messiah, God's son, that God could fulfill His plans to give us "hope and a future," as Jeremiah declared. As we experience this light and momentary trial, we praise God for our certain hope and rejoice in it. We ask Him to keep us listening and learning, not as the horse or mule who need bit and bridle, but as those who trust in the Lord and whom steadfast love surrounds (Psalm 32).

And what is the purpose of this particular instance of suffering? We know only as much of it as God chooses to reveal. I am convinced, however, that God has brought Eliza into your life to bring you face to face with your loving Creator. He has made you, and your life depends on your response to Him. I pray that you will seek Him with your whole heart. Please do not hesitate to contact us if you are stirred to anger or desire by God's relentless Love.

In the care of her Creator, Eliza continues to follow doctor's orders: She chunked up an additional 80 grams(n.b.: 30 grams = 1 ounce) last night. Her breaths are strong. We anticipate another extubation attempt Wednesday-ish, but the medical establishment has not been very specific in their speculation. They have said that they expect to put a bi-pap over her nose when they extubate her. This will force air into her lungs to help with inflation and deflation of them. A nurse warned that most babies hate having air blown up their nose. Indeed.

Pray.
Love,
Sam, Daniele, Luke (who, truly, remains delighted and delightful), and Eliza

Eliza update 3/10 2pm

Dear family and friends,

The official report on the EEG is as expected (Sam is considering a new career as an EEG technician!). No seizures, but the brain activity--though more continuous than before, which is an improvement--remains abnormal. As a result of the absence of seizures, it appears that the doctors will not increase Eliza's dose of phenobarbitol, one of the two anticonvulsants she is still taking. The level in her blood has already dropped below therapeutic levels, and instead of weight-adjusting her dose to maintain an effective level, the doctors will simply let her outgrow the dose as she gains weight as long as she remains seizure-free.

After an apparently stressful morning of assessments and blood tests, etc., Eliza spent a couple of hours sleeping in my arms; Sam's at the hospital now, hopefully giving her a few more hours of snuggle time. The doctor and nurse practitioner plan to do nothing new today except increase her feedings a little bit; otherwise, they just want her to rest and work on gaining weight. So there hopefully will not be anything else to report for today. We'll keep you posted if there is.

Love,
us

Eliza update 3/9 9:15pm

Eliza's nurse just called: her ventilator settings are back down a bit and she's doing very well. She gained 60 grams today (that's big; they're hoping for 20-50 per day!), so that's a step in the right direction for sure. Whew...I much prefer the slow news days...

Eliza update 3/9 9pm

Not much to add, except that the lung collapse appearsto have been more extensive than originally thought, so Eliza's respirator support was increased a bit overthe course of the day to give her some help in reinflating her lung. Sam was at the hospital while the EEG was running for a little less than an hour this afternoon; we don't have an official report yet, but based on his six weeks of intense training in reading these things, Sam reports that he saw nothing looking like a seizure, but brain activity that looked about the same as before (abnormal, or so we're told). I'll likely hear the official word from neurology when I go in tomorrow morning.

Thanks for all your words of encouragement. Today has certainly felt like a low day as compared to the high we experienced yesterday. But we continue to be steadfast in our trust that this time of trial will indeed end in a time of rejoicing.

Love,
us

Eliza Update - 3/9 8am (Quick)

Just a quick note as I head to the hospital this morning: Eliza was reintubated around 1am. Apparently, she just tired out. We don't know the whole story yet, but we'll be in touch when we do.

Please pray that we'll continue to be able to say what He has taught us: "It is well with my soul."

Love,
us

Eliza Update - 3/9 2pm

Dear ones,

The neonatologist and nurse practitioner believe that Eliza's extubation failed because she just didn't have the strength to keep breathing. This may be partly because the feeding tube going directly to her intestines does not allow her to get the volume of milk that she needs; there's just not as much space for milk there as in her stomach, so she has steadily lost weight daily over the past week or so. They are trying to increase her calorie intake by adding formula powder to the breastmilk, and they will not try to extubate again until they've seen her gain weight. Hopefully, this will give her the energy she needs to be more successful next try. This next try will hopefully come within the next week.

For today, she's resting and recovering from last night's ordeal, which caused some collapse in one lung and a good amount of exhaustion. She'll also undergo an EEG at some point today to check for sub-clinical seizure activity.

Many of you have asked after Luke. He's doing pretty well, considering. We're so grateful for friends who have cared for him every morning while I'm at the hospital and for family members who have been able to come and help over the past several weeks. No, he still hasn't seen Eliza, except through the nursery window for a minute at Durham Regional (where she was born) that first day; he's not even allowed in the waiting room much less the NICU at Duke because of infection concerns, so it'll be a long time before he gets to see her. He just keeps asking if she's feeling better and if she'll soon come home to play trains with him. For our part, we hope she'll get home long before she's able to appreciate his Thomas trains collection!

Love,
Daniele, Sam, Luke, and Eliza

Eliza Update - 3/8 8pm

Dear family and friends,

Eight hours later and Eliza is still breathing on her own! She's still under the oxygen hood (a plastic tent over her head), receiving air that is about 40% oxygen (room air is 21%). At that concentration, she's able to maintain an appropriate oxygen level in her blood, except when she gets upset and cries. It's not completely clear why her oxygen saturation drops when she gets upset, but the hope is that this problem will work itself out over time. The fact that she can cry--and that her voice is becoming less hoarse as the hours go by--is apparently a good sign; this means that her vocal chords, which were separated by the ET tube, are coming back together, and this is essential for independent breathing. We've once again been cautioned not to be too surprised if she tires out in the next couple of days and needs to be reintubated for a few days of rest.

As for the near future, if Eliza continues to breathe well on her own for the next week or so, the doctors will do a swallow study, an x-ray to see if her swallowing reflex has returned. Two to three weeks from now, assuming the swallow study goes well, they will begin to attempt feeding her by mouth. In addition, Eliza is scheduled for a 24-hour EEG tomorrow, as the level of phenobarbitol (anti-convulsant) in her blood has again dropped below the therapeutic level. If the EEG shows no seizure activity, the doctors will not likely boost the level of that drug but will instead allow it to begin to wean itself. Another MRI is also in the tentative plan for a week or so from now.

It's hard not to get too impatient now that Eliza seems to have passed this big test, but we know she still has a long road until she gets home; we'll continue to trust and wait on God's perfect timing.

"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort" 2 Corinthians 1:3.

Love,
Daniele, Sam, Luke, and Eliza

Eliza Update - 3/8 2pm

It's out! Eliza's breathing tube was removed around noon, and she's doing very well. She has had a little trouble maintaining her oxygen levels, so she is under an oxygen hood, receiving humidified, oxygen-concentrated air. The level of oxygen will be gradually weaned until she's ready to breathe room air again. She has even been crying some, although with her very irritated throat, it sounds more like a squeak than a cry.

Now, we wait to see if she's strong enough to continue breathing on her own and if she can swallow and cough forcefully enough to maintain a clear airway. We're so grateful for your continued prayers!

Love,
us

Eliza Update - 3/7 2pm

Dear family and friends,

No extubation today. For some reason (and I'm still not sure what that reason is, as no one seems to know or be willing to share--miscommunication? mistake?), Eliza was not given the steroids she needed to get yesterday in order to be extubated today. A few doses of steroids, both before and after extubation, will ensure that Eliza's breathing is not compromised by possible airway swelling. The good news is that Eliza continues to fight the respirator and demonstrate that she's ready for an attempt (very sad to watch, but good to see from a medical standpoint), so she'll be given the steroids today and be extubated tomorrow.

Please continue to pray that she'll be strong enough to breathe and also that her swallowing reflex will have returned--impossible to tell while she's intubated, but completely necessary to maintain an open airway once she's extubated.

Love,
d et al

Eliza Update - 3/6 8pm

Dear ones,

Some big news today: if Eliza continues tonight to do as well as she has been over the past several days, she will be extubated (her breathing tube will be removed) tomorrow! We'll know sometime tomorrow morning after the doctors have completed their rounds whether they think she's ready or not. If she is extubated tomorrow, it will certainly be a relief to her; over the past day or two she has become increasingly uncomfortable with the tube down her throat, probably because she continues to become more aware and alert every day. We've been warned not to be surprised if, after a day or two of breathing on her own, Eliza tires out and has to be reintubated for a little while to rest some more. After all, she has barely ever breathed without support, and she is still slowly recovering from being very, very sick.

In order for all of the odds to be in Eliza's favor for a successful extubation, her feeding tube (which went through her nose to her stomach) was replaced today with a duodenal tube (through her nose directly to her duodenum, which is at the beginning of the intestines, bypassing the stomach entirely). This was done to eliminate her reflux. As many of you know, reflux is not uncommon in babies, and with Eliza's muscle weakness, it's not surprising that she would suffer from it. However, for a baby who is intubated or is going to be extubated, it poses an increased risk: if Eliza does spit up, she could inhale the milk into her lungs and end up needing to go back on the respirator in order to recover. The duodenal tube makes reflux impossible, so Eliza will have her best chance to breathe on her own when the breathing tube is removed. Once her breathing stabilizes, the d-tube can be pulled back into her stomach.

In other news, Eliza is now only receiving two of the three anti-convulsant drugs, both at relatively low doses. If she continues to do well and show no signs of seizures, the doctors will consider weaning those slowly to determine whether they are at all necessary. For now, though, all efforts are focused on getting her breathing on her own, so nothing else will change anytime soon.

Please pray! This extubation attempt, whether it be tomorrow or in the next few days, will be a huge test of Eliza's strength. If she passes the test...well, we're trying not to get our hopes up too high, but it will be a big step towards getting our little girl home. Please pray for her to be strong and for us to be patient and accepting of whatever God's will is for Eliza tomorrow.

We'll keep you posted!
Love,
D et al

Eliza Update - 3/5 7pm

Dear family and friends,

This evening, having been told that our baby was doing better thanks to God's provision, the elderly cashier at the parking garage said, simply, "But you asked." What a difference asking makes. We too often prefer to cower in our shelters of self-importance, nursing self-centered ambition. Praise God for His mercy in Jesus Christ to call us and draw us out. "Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you." (Jesus in Matthew 7:7)

This morning brought a slight setback: apparent reflux due to the weakness of the esophogal sphincter. Since the respirator holds Eliza's epiglottis open, any milk coming back up could easily enter the windpipe. Instead of giving drugs, the nurse practitioner decided to start continual feeds. Eliza's stomach might tolerate the same total daily amount of milk if we spread it out over the whole day instead of giving it every three hours. This was partially successful, but, as of 1pm, Eliza still showed signs of reflux. At this point, dad got to hold Eliza up on his shoulder. For those four hours (!), Eliza rested peacefully on dad. In the face of a discouraging sense of uselessness as parents, this was a wonderful and encouraging answer to prayer.

All efforts remain concentrated on getting Eliza off the breathing tube. The current schedule should lead to an extubation attempt by week's end.

Attached are some more recent photos of Eliza. The first is of Grandma 'Cinda's visit (Sam's mom) during the week of February 13. The second is of Nana's visit (Daniele's mom) around February 23. The third and fourth were taken during the past week. What a long way we've come in such a short time! Praise God!

Love,
Dixie Jax

Eliza Update - 3/3 8pm

Dear friends and family,

Not much is new with Eliza today, which tends to be good news. Due to elevated carbon dioxide levels in Eliza's blood over the past several days, the doctor decided today to slow down a little bit in the respirator weaning process, but Eliza still continues to get stronger and head in the direction of another extubation attempt. We're told that if all goes well, this could happen early next week.

Eliza is almost up to "full feedings" at this point, which means she's receiving almost the maximum amount of milk needed by a baby her size. She continues to digest well. Now that her swelling is all but gone (photos to come soon, as soon as the film is developed--we promise!), the nurses have recalculated her actual weight: 7lbs. 9ozs. as of this morning. She'll hopefully start gaining healthy weight consistently now.

Meanwhile, I survived a very mild bout of Sam's stomach flu; thanks for your prayers. Many people have asked recently how Luke is holding up: he's been remarkably flexible and is currently thoroughly enjoying the company of Papa (my dad), though he is definitely showing more signs of missing his mom and dad recently. On a positive note, after a couple of weeks of not wanting to talk about Eliza, he has begun asking when she'll come home to play trains with him!

People have also asked recently about our ability to hold Eliza when we visit. Over the past couple of weeks, now that she doesn't seem to be suffering from any more seizures, we can hold her all we want--and we do! This is much easier now that all of her intravenous lines are gone; she has only her breathing tube, feeding tube, and heart/respiration/oxygen monitors connected at this point. Her Grandma 'Cinda (Sam's mom) and Nana and Papa (my parents) have also been able to spend time holding her.

Speaking of FAQs, Eliza is still on three anticonvulsants, but other than those, she's on no meds other than an iron supplement (to boost her red blood cell production). She will likely be put on a course of steroids before her next extubation attempt, though, to help reduce airway swelling.

Over the past several weeks, the lyrics of a favorite Amy Grant song, "Carry You," have often run through my
head:

"If I can walk on water
And calm a restless sea
I've done a thousand things you've never done

And I'm weary watching
While you struggle on your own
Call my name, I'll come

I give vision to the blind
And I can raise the dead
I've seen the darker side of Hell
And I returned
And I see these sleepless nights
And I count every tear you cry
I know some lessons hurt to learn

Lay down your burdens, I will carry you
I will carry you, my child."

As we struggle as parents to carry our children through this difficult time, we continue to be so grateful that God's love and care for us are much higher and wider and deeper and stronger than we can ever understand.

Love,
Daniele, Sam, Luke, and Eliza

Eliza Update - 3/1 6:30pm

Dear family and friends,

Eliza has had another uneventful day. The respiration technician assures us she is on the right track to get off the machine support. There is no indication that she is suffering from further seizures. Her wakefulness remains sporadic and short-lived, but she is a newborn who has been through plenty of stress.

In this waiting period, we cherish Jesus' words in chapter 12 of Luke's gospel: "Do not be afraid, little flock." And we take seriously his command: "Be dressed ready for service and keep your lamps burning." Thank you for upholding us in prayer and in many other ways, big and small.

As you bring Eliza's name before our good God, please remember also a baby named Alexander. He has suffered from inexplicable and severe seizures since his birth in August. The seizures had lessened but have recently become extremely frequent. His parents are Vanessa and Andy. They are in Florida. I know of this only second-hand (through Janet Ray) and so don't have details, but please join us in praying for them as they have prayed for Eliza.

Love,
dixie jax

Eliza Update - 2/28 8pm

Dear ones,

We greet you from the twilight of our longest February on record--and yet, we hardly noticed its passing.

The respiration saga continues. Eliza's breaths are gaining more volume. The respiration technicians will wean on a regular schedule, which we hope will lead to an attempt at extubation next week. For Eliza, with growing alertness comes growing annoyance at having a tube down her throat. Thus, Eliza gags violently at times. At other times, she shows clear signs of crying but is prevented from uttering any sound due to the tube. It's hard for us to watch, no doubt harder for her to suffer. Nevertheless, we understand that this should not cause any permanent damage.

The increased efficiency of Eliza's liver has reduced her phenobarbitol level. Phenobarbitol is the standard anti-seizure med, one which Eliza has had "on board" from the beginning. There was some suspicion
that some rhythmic arm movements were seizures resulting from the decreased phenobarb. Therefore, the doctors unanimously decided, after lengthy consultation with us, to get her phenobarb level back to a therapeutic level. This seems to be the best course for supporting Eliza's progress.

Thanks to everyone who has offered freezer space. Mama-moo-cow (self-titled) has it all worked out but will be in touch if she becomes the dairy queen.

Yes, we insist on holding Eliza long and often. In typical newborn fashion, she is mostly awake in the middle of the night, which is not surprising since she endures most of the poking and prodding during the day--better to sleep through that bit if you can.

Praise the Lord.

Love,
dixie jax

Eliza Update - 2/27 7pm

Dear all,

Eliza had a 40-minute EEG today, the preliminary results of which are the same as last week: no seizures, but no normal brain activity either. The neonatologist doesn't seem too concerned about this; she says that it is not unlikely that Eliza could take several weeks to recover. As Eliza seems to be acting more like a normal baby these days, we'll just wait to see how she continues to progress. The gradual weaning from the respirator continues. During the day, Eliza does all the breathing on her own with pressure support only and very few set breaths; at night, she's given breaths in addition to the pressure support to allow her to rest. This is apparently the best way, if a slow one, for her to build up her lung strength.

Sam's on the mend, too, by the way!

"He will have no fear of bad news; his heart is steadfast, trusting in the LORD." Psalm 112:7.
Please pray for our family's heart to be united in this attitude.

Love,
us

Eliza Update - 2/26 8pm

Just a quick message:

Eliza has had another good day. She's being slowly weaned from the respirator; since midnight last night, she has received only pressure support and no set breaths. This means that she's initiating all the breaths on her own, and the respirator is only serving to increase the volume of those breaths, as she's just not strong enough to breathe deeply on her own yet. This weaning process will be very slow and will likely take at least a week or two to complete.

In other news, we'd appreciate your prayers for Sam, who has been in bed all day with a stomach flu; please pray for him to recover quickly and for the rest of us, especially Eliza, to stay healthy.

We'll be in touch tomorrow,
Love,
us

Eliza Update - 2/25 8:30pm

Dear family and friends,

By praying, we declare that God is powerful and personal. We affirm what God the Father definitively proclaimed through God the Son. Jesus' death on the cross unmistakably shows the deep love of God for His people, first for Jew, then for Gentile. Jesus' resurrection shouts the might of God. In prayer, we celebrate the history of God's intervention and invite Him to be Himself in the present. Awesome.

Jesus' hand continues to touch Eliza. This afternoon, Mama and Nana (Daniele's mom) got to spend 2 hours with an awake Eliza, big eyes and all. Yes, we know we need to send pictures soon.

On the medical side, Eliza is now off of all IVs. The nurses are administering the three seizure-meds by mouth. The only major medical inconvenience is the respirator. The respiration technician is weaning Eliza slowly, but her lungs need to show more oomph before they can take the tube out.

In other news, Eliza has apparently convinced the nurses that she is every bit a normal baby belle. They have begun dressing her in pink and purple outfits and putting ribbons in her hair. As pitiful yankee transplants, we defer to all y'all johnny rebs for feedback on proper debutante attire.

Love,
dixie jax

Eliza Update - 2/24 8pm

Another slow news day...

Eliza continues to make slow progress towards waking up. Each time she opens her eyes, they stay open a little longer and seem to focus a little better. It's still only a few minutes every once in a while, but any progress is good. Physical therapy evaluated her for a second time today and said that she seems to be holding up well; we have some new muscle-stretching exercises to do with her daily.

Eliza has experienced a little bit of reflux as her feedings are increased; the doctors say that this is to be expected since her stomach muscles are still weak, and slowing down her feedings seems to have taken care of the problem. Speaking of feedings, I have an unusual favor to ask of those of you on this list who live nearby: I am currently pumping breastmilk about five times faster than Eliza is using it, and I have a three-week headstart on her! This means that I have not only filled the hospital freezer space allotted to me, but a neighbor's upright freezer and our own kitchen freezer! Does anyone have a significant amount of extra freezer space--a garage freezer or upright freezer with space to spare? If so, that would be a huge help.

Thanks for your emails and voicemails, and thanks for keeping us in your prayers.

Love,
D, S, L, and E

Eliza Update - 2/23 7pm

Hallelujah! There's really nothing to report today!

Eliza's feeding volumes continue to be increased; as a result, Eliza will likely soon not need any intravenous nutrition. They have begun removing some of her lines since they won't need them for medications or feedings any more. Eliza's muscle tone seems a little better today, too.

And that's really it! We'll update you again tomorrow...

Love,
us

Eliza Update - 2/22 8pm

Dear ones,

Two quick things:

1) We have postponed Eliza's muscle biopsy. Everyone concerned in the decision had at least a slight reservation about how the stress of the surgery might affect Eliza. Since the tests on the muscle tissue won't necessarily provide any conclusive results, and since any results will take 2-3 months, this seems a sensible move.

2) Da-da got to hold an alert Eliza for an hour this afternoon. Her eyes were the most open they've been. By the way, a visit is no longer complete without a long-term hold by one of us. This has been a wonderful blessing--and good for Eliza, too, we think.

Sam is back to work at Trinity. This is a bit exhausting, but the atmosphere of love is palpable and sustaining. Daniele continues to struggle with the cold. Luke is still walking on sunshine. Nana (Daniele's mom) arrives tomorrow close on the heels of Grandma 'cinda's departure.

Our cup overflows. Praise the name of Jesus.

His love endures forever,
dixie jax

Eliza Update - 2/22 12noon

Dear family and friends,

As of this morning, all of Eliza's blood levels are back to normal: no signs of infection, muscles and organs all functioning normally. The neonatologist believes that Eliza's extubation failed not because her lungs aren't strong enough, but rather because Eliza had not yet redeveloped a gag reflex. Interestingly, about an hour before the doctor reported this suspicion to me, Eliza's nurse and I both thought we saw Eliza *attempt* to gag when the nurse suctioned her lungs and mouth. It was definitely *something*, we agreed, though not a full-out gag; she's never had any reaction at all to being suctioned, so this is definitely a step in the right direction. Apparently, these reflexes can come back very slowly sometimes.

Since she's so stable now, Eliza is scheduled to have her muscle biopsy tomorrow at 10am. The surgery should be simple and quick; the biggest concern in Eliza's case is the fact that she'll need to be sedated. Considering the fact that she has had adverse (to say the least!) reactions to sedation in the past, the doctors will be very careful to use as little general anesthesia as possible. All the same, Eliza will probably be even sleepier than normal for twenty-four hours, so tomorrow will probably not bring much development in the area of waking up.

Eliza's big brother is growing impatient with this email, so I'd better run...

Love,
Daniele

Eliza Update - 2/21 1pm

Eliza continues to defy doctors' orders: last night around midnight, the doctors (perhaps still a little giddy from the EEG excitement) decided to try to remove Eliza from the respirator. After a very stressful and unsuccessful thirty minutes or so, they had to reintubate her. Her lungs just aren't strong enough for her to breathe on her own yet. Baby steps...

Meanwhile, I got the official word on the EEG from the neurology team this morning. As Sam and I had deduced on our own last night, the surprisingly almost-seizure-free EEG is not likely the result of any medication; after all, Eliza is actually on fewer medications now than she was as of the last EEG reading. So one of two things has likely happened: 1) the brain disease/disorder/injury/insult/ whatever is getting better in spite of (and not because of) treatment, or 2) Eliza's brain has suffered such damage after almost three weeks of seizing that it is no longer able to seize, despite the fact that whatever was wrong probably still is. Nothing but time will tell which is true; we still need to wait to see what Eliza can do as she struggles to wake up. She's not doing much of that today, but no one is surprised after the extreme stress with which she was faced during last night's extubation experiment. So she's sleeping it off, and we're waiting as patiently as we can to see what's next on her (that is, God's) agenda.

Sam's back at work as of today, though likely just for half days for a while. In fact, he's en route to the hospital now, hopefully to have a look at another EEG reading from today while he spends some time with Eliza. We'll keep you posted as we see what God has in store for our little girl today.

Love,
Daniele et al

Eliza Update - 2/20 5pm

Dear family and friends,

The doctors' plan for today: feed Eliza dissolved caplets of a B6 derivative purchased from amazon.com.

Eliza's change of plans for today: get hooked up to the EEG and surprise the medical community by having only 2 mild seizures in 4 hours of monitoring.

The doctors' response to a request for explanation: (A very happy) "I don't know."

Our response: "Help me, O LORD my God! Save me according to your steadfast love! Let them know that this is your hand; you, O LORD, have done it!" Psalm 109:26-27

So, the EEG machine has been removed for further review of the data it collected. We'll get the official report on that tomorrow. Meanwhile, Eliza continues to wake up. Daniele held her for about an hour today, during which time she opened her eyes almost every time Daniele spoke. Eliza continues to breathe so well that the doctors anticipate removing her breathing tube tonight. We also forgot to mention that the catheter was removed on Sunday. (Da-da changed a poopie diaper today.)

The question of how "meaningful" a recovery we can expect still looms. Nevertheless, we rejoice with you tonight in this answer to prayer.

Love,
dixie jax

Eliza Update - 2/19 3pm

Dear family and friends,

As of yesterday, Eliza was showing more frequent signs of wakefulness: opening one or both eyes for several seconds, responding to touch with some reflexive movements, breathing more effectively. Today, she's much more sleepy, owing at least partly to the fact that she was given a few doses of a sedative last night. This was because she began showing clinical signs of seizure activity again: twitching feet and legs, rhythmic arm movements, breathing changes. We were surprised to hear of this development this morning, as we were under the impression that she would not be sedated again; after all, the main priority has been to see what she will do if/when she wakes up. But apparently the nurse practitioner last night was concerned for her comfort and decided along with the attending to sedate her again. We have been assured that Eliza will not be sedated again unless she shows obvious physical signs that the seizures are compromising her body, e.g. heart rate drops or breathing trouble, and not without our consent, even in the middle of the night.

On Monday, the doctors intend to try giving Eliza a nutritional supplement called pyridoxal 5 phosphate, a form of vitamin B6. As far as they know, this has never been given to a newborn (they ordered it on Amazon.com!), and it has certainly never been used at Duke. As a nutritional supplement and not a drug, it does not have FDA approval and will therefore require emergency approval from the powers-that-be at Duke in order for them to administer it. It is also unclear what, if any, side effects this vitamin will have. Pyridoxine, a slight variant of the same vitamin, is something they tried ten times already, and it did not seem to have any side effects, although it is also more commonly used. Pyridoxal 5 phosphate is a very long shot, as it is a very rare disorder that requires treatment in this way. But the doctors have run out of other things to try, so this is it. Eliza will be hooked up to the EEG again to monitor what, if any, effect this treatment has. We've been cautioned not to expect this to be the "magic bullet."

In other news, Luke and I are both sick; for Luke, that means that he's dealing less well with Mom and Dad being gone so much, and for me that means wearing a mask when I visit Eliza and being cautious about contaminating her in any way. After all, her immune system is so compromised that even a cold could prove fatal at this point. It hardly feels right to complain about colds, which are really so minor in comparison with what little Eliza is fighting, but they're an inconvenience all the same.

We appreciate your continued encouragement and prayers.

Love,
Daniele, Sam, Luke, and Eliza

Eliza Update - 2/17 5pm

Dear family and friends,

Day after day we receive e-mails, cards, and phone calls (not to mention drop-ins, meals, and hugs) that proclaim God's love through your love. We can never repay it, so we'll just enjoy it. We thank God for you and are praying for you to enjoy His presence and walk in His wonderful light.

Eliza's awakening has progressed. While we sat with her today, she barely opened her left eye several times. Of course, we cooed over her mercilessly, inducing further sleep. Hallelujah all the same. As a reward for her continued breathing efforts, the docs have given Eliza a new respiration machine. Instead of simply giving her breaths, this one enhances her spontaneous breaths and supplies its own only when necessary. This will require more effort from Eliza, but it will also give her lungs the opportunity to take over without pulling the rug out entirely.

The neonatologist today summed up the latest MRI by declaring: "Her brain looks worse." The lesions in the white matter are about the same. The brain as a whole, including the brain stem, has definitely shrunk. The seizures do not appear to be causing the damage to the white matter, but the gray matter is seeing some neural death as a result of the seizures. The underlying cause of the seizures is adversely affecting the brain itself--but no other bodily functions as yet. What is that underlying cause? None of the many many tests has turned up a positive result.

Meanwhile, the EEG remains off, which is the only way you can tell whether she is having seizures. The doctors assume that the seizures have not abated. A feeding tube is now in her nose--Eliza finally got some breastmilk today! Assuming her digestive system tolerates the feedings, oral anti-seizure medications will soon be a possibility.

Every further meeting with doctors confirms: they don't know how it started; they don't know how to stop it. It's a good thing we fear and hope in an almighty God of love. Otherwise, we would surely share their despair. As it is, He gives us Grace in Jesus Christ to face each new day. Praise His name.

Love,
dixie jax

Eliza Update - 2/16 10:30pm

Dear family and friends,

Eliza is breathing more on her own today and having more reflexive movement (toes, lips, fingers), but some of this movement may be caused by seizures, which have not let up.

We have not received the formal report about the MRI. A neurologist and a nurse practitioner mentioned that the initial readings are not good. Specifically, the lesions in the white matter may have grown, and the brain as a whole may have shrunk. Again, this is not the formal report. We should get that tomorrow.

Eliza's blood pressure is now too high. The doctors have attempted to correct this through medication, but this has not yet been effective.

Not much news. And so, we wait "until the day dawns and the morning star rises in your hearts" (2 Peter 1:19). Come, Lord Jesus.

Love,
dixie jax

Eliza Update - 2/15 8pm

Dear family and friends,

"His delight is not in the strength of the horse, nor his pleasure in the legs of a man, but the LORD takes pleasure in those who fear him, in those who hope in his steadfast love." Psalm 147:10-11

We do fear him, and we do hope in his love and throw ourselves upon his mercy. Not because of anything we had done, not because we deserved it, did Christ come to save. And now, as Eliza struggles, we put all our trust in God and his paternal Love, to which we cling in Jesus' name. And what a wonder that he delights in those who so fear and so hope. Oh, forgive us, Lord, and increase our faith.

The signs of waking are minimal, and any eyelid twitching or toe reflex may simply be the product of a seizure. The seizures have not lessened. There are a couple more spontaneous breaths per hour. Eliza is behind schedule in the waking process. This could mean that she won't fully wake while she is with us. The doctors are pessimistic. We will wait in hope. Eliza has not taken significant steps forward, but her little body continues to recover. Tomorrow brings a third MRI. We'll keep you posted on the results, but we don't expect there will be much to report.

We will rejoice in him.

Love,
dixie jax

Eliza Update - 2/14 8pm

Dear all,

Eliza's recovery from infection and medication continues. She is off all blood pressure meds and has maintained a healthy heart rate and blood pressure level. There are still precious few signs of awakening. We heard reports of one spontaneous arm movement, and her pupils dilate when prompted by a flashlight. As of now, Eliza remains dependent on a ventilator for breathing. Dr. Bidegain says that Eliza is definitely on the path to recovery, but she thinks Eliza should be farther along in the waking process.

On the cranial front, Eliza's seizures have not let up, but there have been signs on the EEG of normal brain activity. The plan is for Eliza to undergo another MRI on Thursday to see how her brain looks. This MRI will focus in on the white matter where the irregularities appear. The doctors are still considering the use of another coma to stabilize Eliza's brain activity. The neonatologist, however, wants to make sure Eliza has completely recovered before any movement in that direction.

"My flesh and my heart may fail, but God is the strength of my heart, my portion forever." Psalm 73:26

Love,
Dixie Jacksons (including our southern belle)

Eliza Update - 2/13 8pm

Dear family and friends,

At our meeting this afternoon, the doctors communicated that they no longer have hope to find an explanation for Eliza's seizures or a medication to control them. Thankfully, our hope is not in medicine; despite their increasing sense of defeat, we know that Eliza's life, no matter how short, is a gift from God and a perfect fulfillment of His plan. One doctor said, "At this point, her seizures are not going to miraculously go away;" on the contrary, as Sam assured the doctor, we understand that they will ONLY miraculously go away.

Despite the seizures, though, Eliza continues to prove just how strong her body is. It turns out that, in addition to the toxic reaction to the medications with which she was faced this weekend, Eliza has also been fighting sepsis, a staff infection of the blood. She is currently on antibiotics for that infection, which should start to clear up within a few days, and is down to a low dose of just one blood pressure medication. Her kidney function is greatly improved, and her liver is beginning to recover, too, although it still has a ways to go.

The muscle biopsy, which was scheduled for this morning, has been postponed until Eliza is more
stable. For now, the doctors plan to simply let her recover and watch for signs that she is beginning to wake up from the coma. Already, Eliza is occasionally trying to take breaths on her own in response to the triggers from the respirator, and the hope is that she will continue to regain some other basic functions, though the extent to which she'll be able to function as a normal baby is very much up in the air. Only time will reveal what God has in store for her.

Thank you for your continued prayers for Eliza and for our family as we face the challenging weeks ahead. We are in the shadow of His wings.

Love,
Daniele (for Sam, Luke, and Eliza)

Eliza Update - 2/13 12noon (Eliza's Original Due Date!)

Just a quick update: as of this morning, Eliza is off two of the three blood pressure medications and is at a lower level on the third. Her kidney function continues to improve, and her liver enzyme test also shows a bit of improvement. Neurology has disconnected the EEG, as monitoring the seizures is not a priority at this time, but as of last night, her seizures continued to pick up. This is to be expected as Eliza is finally excreting some of the sedatives that were lingering in her body.

We have a meeting scheduled for 1:30 today with the two neonatologists who know her case best; we anticipate that this meeting will be to discuss what's next for our little girl. Please pray that both we and the doctors will have wisdom in discussing and making these decisions.

We'll update you later tonight once we know more.
Love,
Daniele et al

Eliza Update - 2/12 1pm

Dear family and friends,

Eliza is peeing. This is great news.

Over the past 24 hours, Eliza suffered from severe side effects from propofol (the latest coma-inducing med). Her heart rate and blood pressure dropped to dangerous levels; her kidneys descended to the point of renal failure. Therefore, we joyously report that she is now peeing, her heart is beating strongly, her blood is pressing. She has meds to help with the latter two; the kidneys (and liver, to boot) must recover on their own, which they appear to be doing. We are not out of these woods, but Eliza has found a trail.

There was a point last night when we felt we might be watching Eliza slip away. Instead, she proclaimed to us: "I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses...and calamities. For when I am weak, then I am strong" (2 Corinthians 12:9-10). Amen, Eliza.

Meanwhile, the seizures have returned full force, approximately 8-10 per hour of 3 minutes duration each. The neonatologist, in consultation with various colleagues, has decided that Eliza should take this day to recover her normal body function without the risks involved in treating the abnormal brain activity.

God willing, Eliza's body will regain its balance quickly. At that point, the next possibility is, again, a coma. Apparently, the first two attempted comas did not "fully quench" the seizures, i.e., stop the seizures completely for at least 24 hours. The new drug is one that is often used in infants for this very purpose. It is called versed or medazlin. Rest assured, we (and the doctors) are proceeding with great caution toward this possibility. Please pray for patient wisdom and protection for Eliza in the mean time. What an awesome privilege to enter into prayer, to seek to know God's will and to act according to it. Let us tread humbly but confidently in prayer together.

Love,
the dixie Jax

Eliza Update - 2/11 6pm

Dear all,

Unfortunately, this weekend has not worked out to be as quiet as we had all hoped. As of this morning, Eliza's body was no longer able to tolerate all of the medications, and so instead of leaving her in a coma and weaning her very gradually next week, the doctors had to quickly remove the two sedatives that created the coma and had to add several medications to try to increase her blood pressure.

Since removing the sedatives at 3pm, Eliza's seizures have returned at the rate of one every fifteen minutes, each lasting about two minutes, unless she is stimulated, in which case they are more frequent. The rest of her body seems to be recovering a bit, except for her kidneys, which still aren't producing urine and relieving her excessive swelling as they should. We were also told by telephone a few minutes ago that her heart rate has suffered a dramatic drop, so cardiology is currently conducting their third echocardiogram to try to figure out what is going on.

We're both planning to spend most if not all night at the hospital, and we'd obviously appreciate your prayers at what seems to be a very critical time. We know God can still work a miracle in this little girl's body.

Love,
Daniele (for Sam, Luke, and Eliza)

Eliza Update - 2/9 8:30pm

Dear all,

The new coma-inducing medication has not met with much success. The doctors are going to continue to try it through tonight but will wean her off of it entirely by tomorrow if she continues to have seizures as she has been all day. The next step will be to try one more anti-seizure medication, which they have not tried yet for two reasons: it could have adverse effects on her liver, and it's not a particularly powerful drug. But it's something else to try, and the doctors seem to be grasping at straws at this point.

Eliza had a second MRI today; the good news is that there does not appear to be any progression in the damage to her brain, although we won't likely have all the details until tomorrow. As we understand it (and this is mostly our speculation), this probably means that neither the seizures she's having nor the underlying problem seems to be causing more damage. But hopefully we'll have a more thorough explanation tomorrow when the doctors have more time to sit down with us to explain.

As of tonight, even the gentlest of touches or the slightest movement triggers a seizure, so the nurses are trying to reduce her stimulation as much as possible. Unfortunately, with as many blood draws and medication changes and other procedures that Eliza endures hourly, it's difficult to avoid simulating her. So this increased sensitivity (which has never been observed before today) mostly seems to mean that we're not supposed to touch her; as you can imagine, this is rather frustrating.

The muscle biopsy is scheduled for Monday. Another frustrating bit of information we learned today is that we won't have results from that test for two to three months. Other test results, including an apparently important one involving amino acids, continue to trickle in, all with negative results. Eliza appears to be a very healthy, strong little baby whose body functions completely normally...except for this one little thing. The doctors are baffled.

As we near the apparent end of the doctors' knowledge and suggestions, we rejoice at the inexhaustible store of Wisdom on which we rely. Someone asserted today that, no matter what the outcome of this trial, Eliza has and will have a living purpose. To hear the praise of Jesus resound through so many of your emails and cards clearly confirms that Eliza is even now bringing glory to Him who is worthy. What more could parents desire for a child?

"I know whom I have believed and am convinced that He is able."

Love,
The (Dixie) Jacksons

Eliza Update - 2/8 2pm

Dear all,

After sending our email update last night, we learned that in fact Eliza had begun seizing again as of 6pm. She has continued to do so since then. The next step, which is perhaps in progress already, is to use a different drug to induce another coma (an even deeper one, as we understand it) and to again hope for 48-72 hours seizure-free. The muscle biopsy has yet to happen; that, along with another MRI to look for signs of continuing brain damage, should be completed by the weekend.

The doctors continue to be baffled as negative test results trickle in, and despite their increasing hopelessness, we continue to pray for a miracle. Please join us in praying specifically that Eliza's little body will continue to endure these many powerful medications with few side effects, that the MRI and muscle biopsy will bear positive results, and that we will find rest and comfort as we trust in God's perfect will.

Although it took two people and a full five minutes to accomplish it, we were allowed to hold Eliza (and all her equipment!) for a few minutes today. Who knew a six-pound baby could be so difficult to move? We were grateful for the opportunity, as we haven't been allowed to hold her at all since her second day of life. I have attached some pictures, which our nurse, who fancies herself a professional photographer, was gracious enough to take for us, even doing her best to hide as many wires and machines as possible. I suppose these may be a bit shocking, as most of you have not seen a photo since those we sent out from a week ago, but we thought you might like to have an updated image of the little girl that so many of you are thinking about and praying for.

We are grateful today, as every day, for all your expressions of care for us.

Love,
Daniele (for Sam, Luke, and Eliza)

Eliza Update - 2/7 9pm

Dear family and friends,

God has been speaking to our hearts about fear. What is there to fear? Our greatest fear is to be separated from God's love. As long as we are in Christ, that cannot happen. Eliza continues to struggle, but God has reminded us of the right perspective to have. We will not dwell on the possibilities/predictions/prognostications. God will give us strength to handle any future concerns when those concerns arise. For now, He requires us to rest and hope in His love and power. By the power of the Holy Spirit, that is what we will do. With sadness and repentance, we confess that we have not had the right mindset consistently. We thank you for your prayers that effectually return us to the loving arms of Jesus Christ.

Eliza had more seizures this morning, but various medications have kept her almost comatose and seizure-free since noonish. If she remains seizure-free for 1 to 2 days, the doctors will again attempt to allow her to wake. Meanwhile, lab results continue to come back negative for various maladies (I couldn't tell you what all of them are). The one virus (called CMV) for which Daniele and Eliza were tested came back negative, also.

A world-renowned neuro-radiologist based in California received Eliza's MRI today and suggested several possible causes. One cause involves a mitochondrial defect. In order to test for this, Eliza will have a simple surgery tomorrow morning to remove a piece of muscle from her thigh. The results will not return until next week.

Please don't apologize for e-mailing or calling. We appreciate all expressions of love for our family. In return, we'll try to stop apologizing for not returning most calls and emails.

Love,
Sam (for Daniele, Luke, and Eliza)

Eliza Update - 2/7 8am

Dear family and friends,

Eliza was weaned from the coma-inducing medication today, and although it has probably not all left her system just yet (she's still heavily sedated), she did begin having seizure activity again. The doctors added another anti-seizure medication which seems to have stopped that activity. Eliza is also now on two blood pressure medications, as her blood pressure has dropped significantly as a result of the coma, and is breathing only with the help of a respirator.

Today, a new specialist at Duke took a look at Eliza's MRI and suggested the possibility of a viral infection, so both Eliza and I have been tested for that; we're awaiting those results in 48-72 hours. Her MRI was also sent by Fed-Ex to California to the top-notch specialist in this sort of thing to see if he has any ideas.

We continue to be grateful for all of your emails and messages and particularly your prayers. We'll keep you posted as we have any more news.

Love,
Daniele (for Sam, Luke, and Eliza)

Eliza Update - 2/6 9pm

Dear family and friends,

Eliza was weaned from the coma-inducing medication today, and although it has probably not all left her system just yet (she's still heavily sedated), she did begin having seizure activity again. The doctors added another anti-seizure medication which seems to have stopped that activity. Eliza is also now on two blood pressure medications, as her blood pressure has dropped significantly as a result of the coma, and is breathing only with the help of a respirator.

Today, a new specialist at Duke took a look at Eliza's MRI and suggested the possibility of a viral infection, so both Eliza and I have been tested for that; we're awaiting those results in 48-72 hours. Her MRI was also sent by Fed-Ex to California to the top-notch specialist in this sort of thing to see if he has any ideas.

We continue to be grateful for all of your emails and messages and particularly your prayers. We'll keep you posted as we have any more news.

Love,
Daniele (for Sam, Luke, and Eliza)

Eliza Update - 2/2 8:30pm

Dear family and friends,

The brains at Duke did not gather today as expected, and the hopes of gleaning more from the MRI were apparently unfounded anyway. It appears instead that the focus will shift to various lab results that should begin to filter in over the next week.

The doctors have successfully induced the coma and plan to begin the waking process starting Sunday night. It will take several days for the coma-inducing medication to fully exit Eliza's precious little body. The exact length of the exodus depends in part on the efficiency of Eliza's liver in processing the medication. Even as the coma lifts, Eliza will remain on seizure medication to wean her gently.

Meanwhile, the lab results (including many blood tests and another spinal tap) could help the doctors to determine if Eliza suffers from any of a number of genetic conditions that might induce seizures. The doctors may also order a follow-up MRI. We were cautioned, wisely, I think, not to join the doctors in speculating on the range of possibilities.

Instead, we will pray. Again, our door will be open tomorrow (Saturday) for prayer from 1-2pm. Our address is 716 Turmeric Lane, Durham, 27713, in case you need to mapquest it. Drop in or pray where you are. Daniele and I have been upheld in miraculous ways through this time. I realized today that it can
only be the work of God's Spirit ministering to our spirits that has prevented any inclination to question his lovingkindness. Thank you for your prayers. Let us enjoy the privilege of invoking Jesus' name together.

Love,
Sam (for Daniele, Luke, and Eliza)

P.S. If another update does not appear for a couple days, don't be surprised. We have been advised to expect a slow-down ourselves.