We have made a lot of progress since my last post!
Ella's TPN was finally reduced by 25% last Wednesday! We did not get a reduction in hours, she is still getting her fluids for 20 hours but at a lesser volume. Our fluid bag is a lot smaller too! This means her backpack is lighter! Not that her backpack is heavy... but when you are carrying a 12lb baby (yes, she is now 12lb 2.5oz) and have to carry a backpack with fluid and a pump, you can tell the difference when they cut back by 150ml.
We are enjoying 1 doctor appointment a week (this week we see the GI doctor on Halloween) and our PT/OT at home each week. Nurse J comes every Sunday afternoon to change Ella's central line dressing. Unfortunately after PT tomorrow morning we have to go to the hospital for labs.
I am so excited that I found an excellent Au Pair! When I first went down the path of considering an Au Pair I had a 'wish list' in my head of everything I wanted in someone who would come live in my home and take care of Ella. I was sure I would have to compromise and settle for 'good enough'. We are classified as 'Special Needs' with the agency which means only prospective Au Pairs who indicate they are comfortable working with Special Needs children can be available for us to interview/hire. This is a tiny pool of candidates. Over about 3 weeks of looking I saw less than 5 profiles!
I had poor interview with a candidate from Brazil on Wednesday afternoon, due to technology issues (international interviews via Skype are tricky). The next day the profile for N shows up as a candidate and I couldn't believe what I saw!
N (I will wait to share her name once she gets here and gives me permission) is from South Africa. Her native language is English (this is a huge plus, very hard to come by)! She is in her early 20's and graduating from college next month. She has years of childcare experience/training, including infants and special needs. She is mature and responsible. She still lives at home with her family and wants to have an adventure, gain independence, before going home and working on her Masters degree. I found someone who meets my 'wish list'. She said that she immediately connected with us and knew we were the right match for her (she was interviewing with another family as well). As long as all of the paperwork (Visa) is processed timely she will be here mid December. We are so excited to have her come spend a year with us!
This week I have in-person interviews for Part Time Nanny support to help us out until N arrives and settles in.
Hanging Ella's fluids every night is still going really well. I can still get it done in less than 30 minutes now that I have figured out the technique that works consistently to prime the line.
I just realized that the next set of bottles need to be filled before our 9pm feeding. Must go!