That's right- a repeat performance. Harper went right
back to the vomiting when they changed the feeding schedule, so we are
back on continuous feeds. What does that mean? It means she has once
again stumped her medical team! She cannot get out of here on
continuous feeds, so they are discussing what to do next. The
nutritionist is searching for a better formula option, and the doctors
are back to contemplating a g-tube surgery in the near future.
Harper's occupational therapist worked with her this morning during one
of her "fits," and was able to calm her down without the use of
additional meds... Great praise because we are now day three without
morphine! They also worked some more on oral feeding, but that was not
as successful. Harper did suck her pacifier, but we were only able to
do about five total drops of milk before she started gagging and
sounding overly congested. So, that was another point in favor of the
g-tube.
Harper's neuro team also visited today, and she has been basically
cleared by them. They removed her final sutures, and Dr. Fuchs said she
is "wonderful" and can go home whenever they figure out this feeding
stuff. He said her pathology reports showed that her cysts were not
tumors, but they also were not true choroid plexus cysts, either. He
said they appear to be an issue that occurred with the development of
the lining of the choroid plexus, which is one of those things they just
cannot explain. The good news is that because it seems to be a fluke
in the developmental process, they do not anticipate there to be any
further growth. She will continue to have her head and brain monitored
always, but hopefully they will continue to be amazed by her!
For now we wait, but as this mommy waits, Psalm 139 keeps running
through my mind- how grateful I am for His wonderful plan! "For you
formed my inward parts; you knitted me together in my mother's womb. I
praise you, for I am fearfully and wonderfully made. Wonderful are your
works; my soul knows it very well. My frame was not hidden from you,
when I was being made in secret, intricately woven in the depths of the
earth. Your eyes saw my unformed substance; in your book were written,
every one of them, the days that were formed for me, when as yet there
was none of them." -Psalm 139:13-16
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