Since our situation is changing so rapidly, I thought it would be a good idea to start my update with where we are at the moment and work my way back to where we were earlier this week.
Aurelia is currently living in the Intermediate Care Nursery (ICN). This is a step up from her first home in the NICU, and we are so pleased that she's progressed enough to be up here. She is still living in a pod as she's had a little trouble with temperature control. She's also getting some photo therapy to combat some jaundice. Most of her fluids are given through an IV drip, but we have feedings with her every three hours trying to establish some weight gain and normalcy. For the most part, she continues to exceed expectations. She is alert and responsive despite having a very tough first week. In the next week, we'll begin meeting with specialists including eye doctors, occupational therapists, neurologists, developmental pediatricians, and all kinds of other incredible doctors. She will have an MRI in the next week to look at her response to the shunt surgery and to get a better look at her brain structures.
How long with Aurelia be in the hospital?
The answer to that is still unknown, although we tentatively hope it will be in the next week. In order for her discharged, she needs to be on a regular feeding schedule, gaining weight, able to come off the IV drip, and maintain her temperature (although we think this last one is under control). She also needs to see some of the specialists as an in patient. If she's unable to eat regularly, the response would be to have a feeding tube put down her nose to teach her what it feels like to have a full stomach and to be hungry. Of course, we'd like her to figure this out without the tube.
What's going on with the hydrocephalus?
Another question without an answer. We know she has responded to the shunt surgery as her head circumference has gone down since birth. At birth, she measured 43 cm, on Thursday she measured 40 cm. This is actually a whole centimeter smaller than her head measured at my last ultrasound! However, we don't know what all is going inside of her head and how her brain tissue has been affected. Hopefully the MRI will answer some of these questions and show a better picture of the ventricles.
What do you need?
Right now, we need a lot of prayer for strength and perseverance. We are staying in the hospital still in rooms designated for parents of ICN/NICU babies. It's been a great blessing to be just a hallway away from our girl. When we get home, a meal calendar will be set up and I'll post the details of how and who to contact. But for now, we are trucking along as best we can.
We appreciate all the prayers for our little one. She is quite the amazing little lady and we love having her on the outside. It's incredible to watch her fight and win so many little battles.