Another quick update

Here is another quick update for all of you who have been praying about these feeds with us... Harper has now had only bottle feeds for over 24 hours now. That's right- no tube feedings or supplements at all during that time! It's been very hard work, but she's doing it. In fact, overnight she pulled out her NG tube again, and the nurse decided that it would not be reinserted unless absolutely necessary! So, for the first time ever Harper is tube free.

Dr. Carroll talked with me yesterday about what we are seeing with Harper now that she is off of the big meds and feeding on her own. Harper still has some muscle tone issues and is showing some delay in some of her movements, but that is to be expected given her surgeries and the long time that she spent intubated and on sedatives. We are also still seeing some sensory issues and what the doctor refers to as "state control issues." Harper can be very easily overstimulated and is very sensitive to lights and noises. She is also very easily agitated, and doesn't really have a happy medium- she goes directly from happy to hysterics with no in-between or warning. Given those dynamics, feeding has been a challenge because she does not like to feel hungry and is easily distracted or frustrated when bottle-feeding. BUT, God has given her the strength to come this far and she is doing great with it. It's just a learning experience for mom and dad! :)

Harper will continue here in the NICU through the weekend, and our prayer is no more tubes. On Monday morning she will have an MRI to recheck her brain volume, and we hope to be discussing discharge! If she can continue this trend through the weekend, we can take her home finally and then follow up her care with in-home therapy and special clinics here in Wilmington.

As always, thanks for praying... We're almost home!