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
