12/23 Update

I am happy to report that not much has changed with Emy G. Her blood pressure is stable. She is weaning off of hydrocortisone. On Monday, they went up on her dialysis to 12 mL instead of 10 and she is pulling off about twice as much fluid as she was pulling off with that adjustment. This is good news— it means the toxins are being removed from her body in larger quantities. Her catheter bandage was changed again yesterday and there was no sign of infection. Her abdomen almost looks normal- hardly any duskiness. She was weaned completed off of fentanyl, which resulted in a few days of discomfort. I’m glad it was only two days that she wasn’t easily consoled. Now she’s a laid-back kiddo again.

Emy G is a bit of an escape artist as she wriggled out of her nasal cannula about half the time. She moved her head backwards then to one side then the other, this usually did the trick and got that pesky plastic out of her nostrils. It’s a good thing her lungs are doing well so her oxygen saturation didn’t drop when she did this. When she moved her nasal cannula it prompted her to sneeze, which was the most adorable part of her little trick.
She was a bit grumpy when they changed her from CPAP to a high flow nasal cannula today. She can’t easily wiggle her way out of the new nasal cannula. She seemed disappointed about this, but it was for the best to keep a consistent flow of oxygen for her.

She has an abnormal gas pattern on X-ray so they will continue to monitor that daily. Please pray that the abnormal pattern resolves. While they were doing her X-ray they noticed she has two dislocated hips. Right now her hips will be supported by double diapering. She will need to be reevaluated by orthopedics in about a month or so to address her hip issues. Right now, they don’t seem to bother her.

It’s fun to see her little personality come out. She likes hearing her mama and papa talk. Right now she is listening to a variety of books throughout the day read by her parents; she is consistently listening to the fourth Harry Potter book. We’re aiming for a chapter per day, although some days it’s half of a chapter. When she’s being poked or examined she gets a little upset. I console her by holding her head and giving her my index finger to hold. She also enjoys her pacifier, which also calms her down fairly quickly. She loves getting oral swabs of breast milk. It’s very cute to watch her smack her lips in approval. Milk is a yummy snack! Lately, she has appreciated being swaddled and sporting some seasonal onesies. She likes to stay festive for the holidays.

My apologies for a haphazard update. I’m writing this in between pump times to keep me awake. It is very nice to share mostly good news today. Please continue to pray that she avoids infection, avoids leaking, and that she continues to grow. We are very grateful for how far she has come. Thank you for your continued prayers and support.

-R

Emy G 12/23/2020 with her new nasal cannula