Here are some things that have been going on the last couple of weeks:
3/30 – First night back home including getting Nola girl some fresh air and cutting our care partner bands off!! Nola is settling back in well, she was thrilled to see her pup, and is sleeping peacefully in her bed!
4/1 – A little update on how our first couple days at home have been. We are settling in to Nola’s schedule nicely. After being at the hospital for so long we have truly enjoyed being back in our home, taking some good naps, making real breakfasts and dinners instead of eating cafeteria food for the thousandth time. Some perspective on the stay at home orders across the world now is that is what we would have been doing anyway with Nola’s immune system being the most suppressed right now. Everyone else is a few weeks in to being stuck at home most of the time and is likely starting to feel the walls closing in, but to us it feels like the most delightful place to be. I will never take for granted these slow mornings with coffee and morning smiles, napping with my girl on my chest, and getting to spend quality time altogether. We go for Nola’s first round of clinic appointments tomorrow. These include lab draws, echocardiogram, cardiology visit, speech therapy, physical therapy and occupational therapy. For the next month she will have those twice a week.
4/2 – Nola’s first follow up went great with everything looking perfect! She also got to try her first food during her therapies, peaches!
4/4 – Nola’s first trip to the golf course. It may not have involved any golf since the course is closed for golfing, but the sunshine and fresh air sure is nice after being cooped up for so long.
4/7 – Nola had a good cardiology checkup yesterday. She also impressed her speech and physical therapists with her increased eating and strength she is gaining. She got her new high chair today ad got to enjoy some green beans!
4/10 – Nola girl had a great cardiology appointment today. She is doing well enough they moved her appointments from twice a week to once a week (she was scheduled for twice a week for 3 more weeks). She is gaining weight, getting stronger with her ability to hold her head up, and moved from the slowest flow nipple to the next stage up on her bottles.