Eliza update 4/26 9:30pm

Dear family and friends,

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

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

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

Love,
dixie jax

Eliza update 4/25 9:30pm

Dear family and friends,

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

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

Please pray. Jesus is Lord.

Love,
dixie jax

Eliza update 4/19 9pm

Dear family and friends,

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

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

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

Love,
dixie jax

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Eliza Update 4/13 2pm

Dear family and friends,

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

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

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

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

May you have a happy and meaningful Easter.

Love,
dixie jax

Eliza Update 4/9 3:30pm

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

Praise God!
Love,
us

Eliza update 4/8 9:30pm

Dear family and friends,

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

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

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

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

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

Eliza update 4/7 8:30pm

Dear all,

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

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

Love,
us

Eliza update 4/6 10pm

Dear family and friends,

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

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

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

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

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

Love,
us

Eliza update 4/5 10:30pm

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

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

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

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

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

Love,
us

Eliza update 4/4 8pm

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

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

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

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

Love,
us

Eliza update 4/3 10:30pm

Dear family and friends,

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

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

Jesus is Lord.

Love,
dixie jax

Eliza update 4/2 9pm

Dear all,

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

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

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

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

eliza update 4/1 2pm

Dear family and friends,

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

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

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

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

Love,
dixie jax