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