Repeat performance

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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