Saturday

Harper had a rough start to the weekend… She was inconsolable in the early morning hours, so was given a dose of morphine. However, morphine didn’t work this time, so she was given a dose of Ativan for anxiety. This was the second time they’ve tried it and it has been effective, so they are now looking at adding anti-anxiety meds to her daily regimen (most likely Valium).

Harper had done great yesterday with the continuous feeds, but the vomiting started again this morning. We got there just in time to see her off for an upper GI scan, which showed some signs of reflux. They decided to do a trial run of Prilosec to see if that helps her hold down her feeds.

We had talked with someone last night about the possibility of having Harper transferred back to New Hanover, but our doctor told us this morning that Harper just isn’t stable enough at this point to be moved. (She also told us that this is her last weekend working with us- she’s a resident and has to move departments for more training, which was sad news… She has been phenomenal with Harper!). At this point there are just too many uncertainties with Harper’s medications and feeding issues, and, as she explained, they just are not able to totally rule out the possibility that some of these issues are a neurological problem. Unfortunately, that will be a long-term possibility with anything our little fighter faces… Her ventricles are still large and they spent so much time working in her head/brain that the doctor told us this morning that they just cannot tell us what long-term effects there may be so they have to be very cautious and give her plenty of time with her recovery.

It is always difficult to hear those words as a parent, but we have faith that God is not finished working miracles in Harper. We have been so excited about the progress we’ve seen Harper make that we tend to lose sight of what a blessing each little step truly is. We see each step forward as a step closer to home, and it is, but ultimately each step forward is another miracle, another blessing that at one point we didn’t know we would experience. So, no more complaining about how long we are here or how homesick we are- instead it’s time for us to focus on the fact that each minute we get to love on our girl is an undeserved blessing for us to cherish and praise God for.

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