We’re sorry for the delay in updating. Life is a bit hectic right now, as I’m sure you all can imagine (and some of you can relate!). Here is what has happened since Friday, when we had a “care conference” with Anastasia’s medical team about how we will care for her when she comes home, and what needs to happen before then (Mom and Dad need to learn how to use the medical equipment she will need).
We discussed how she will be fed at home. The goal is to eventually get her to breastfeed and/or take bottles, so they are going to let her come home on her OG tube, which is a thin tube that goes down her throat into her stomach. In the meantime Mom and specialized OT’s will work with Anastasia on coordinating the suck-breathe-swallow action that most babies instinctively have at birth. This could take some considerable time since her seizure meds keep her drowsy and she also tends to drop her oxygen saturation levels when we work with her on this. If she shows no improvement over a few months and she seems healthy enough to undergo surgery, we will talk about the possibility of putting in a G-tube.
Regarding her seizures – this is the main thing keeping us at the hospital right now. The neurology team is trying to find the right dose of two seizure meds in order to keep her seizures under control. They are trying spreading out the meds, slowly increasing one or both, etc. With HPE they tell us she will never be seizure free, but if we can keep her seizures under control without needing a “rescue drug“ more than once or twice a week, that would be ideal. Right now she has been needing a rescue drug daily to pull her out of seizure clusters (short seizures that come back-to-back for 30 min. or longer) or seizures that last longer than five minutes. The rescue drug is similar to Valium. It calms her, sedates her, which results in a baby that is not alert enough to interact or work on oral feeding.
Anastasia has been off oxygen assistance for about a week now, but they are talking about putting her back on a low flow as her saturation levels tend to drop overnight. We will see how she does tonight. The low flow is something she can have at home, so this is not something that would keep us at the hospital.
As of right now we are all hopeful that she will be able to come home by the end of this week, but a change in seizure meds can take 3 days to monitor its effectiveness, so if the changes they are making now don’t work, we could be here into next week.
As you can see, we still need lots of prayers. Please keep them coming, and thank you for all that you have sent our way so far.
God reward you!
Regards,
Daddy and Mommy
And the best part: photos!
Gotta flex, gotta exercise…
Purple is my color right now — matches the attachment point of my feeding tube.
