September 20

Overall, Leilani had a pretty good week last week. On Wednesday they stopped her feeding from 8-9 in the morning & in the evening to give her a break from feeding. When doing so, they increased the volume from 31 to 34 to make up for those hours. Sunday, they stopped her feeding for 2 hours in the morning and increased the volume to 36, to see if she could tolerate it. She is still on a feeding tube.

Thursday, her heart rate shot up to 200.  Then it started spiking to 180 and came back down. For some time, it was spiking inconsistently to 130, 160, then back down to 120. They were able to stabilize it.

Leilani had her first play date! On Friday she played with a 7-month-old baby named Isaiah. He is also on the VAD.  Daddy was able to be present via video call for her first play date. It was a special moment for the whole family.

We went to the physical therapy gym. They worked on having her turn over. It’s not easy having the VAD connected. She also did some tummy time. Her VAD looks good. It is filling up 95% and emptying 100%.

Her weight was 16 lbs. 8 oz. and 27” as of Sunday.

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