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