I wish I could say that being home has been nothing but wonderful. Tonight we hit a big bump. It is really great to be home. It is a lot of work too. Imagine suddenly having to go away for three weeks and coming back with a newborn baby you didn’t plan for. There is lots of unpacking, organizing, preparing milk and medical equipment, measuring out medications, timing medications and feeds, lots of cleaning and still looking after a baby who needs care around the clock.
The big bump we hit tonight was when Hana started vomiting – a lot. She was choking and gagging and vomiting. It was very scary. It happened after her evening medications and I suspect one of them is upsetting her stomach. The carvedilol was made at a much lower concentration so she needs to get a lot more liquid for the same dose. I think the extra volume may be too much. I hated having to call the on-call pediatric cardiologist at Stanford so soon after leaving. The nurse practitioner called me too. They were very clear that there is no matter too small, in order for us to call them. My mom decided to change her flight and stay another week. Tonight’s plan is to watch Hana and slow down her NG tube feedings. I started to cry again. I just feel so scared. At least at the hospital she was hooked up where they monitored her heart rate and breathing – you didn’t have to worry because an alarm would go off!
I’m hoping for a restful night for Hana.