April-May

Long time no update...

As many of you know, Isabel came home on April 1. The transition has been stressful, but overall we are all adjusting to our new lifestyle. Dan and I were both off of work for the first several weeks, but have since returned to work. Dan is teaching full time and I am working part-time. We have home care nurses during the day on the days that we both work, and because Isabel requires constant supervision, we also have nurses who come to our house and work the night shift so that we can get some sleep.

Other than simply adjusting to having a "mini-hospital" in our house, the first couple of months were very busy. We had lots of follow-up clinic visits back at Mott and to the pediatrician, and a couple of trips to the ER for what ended up being minor issues. The first time didn't seem minor initially, and we all got to ride in an ambulance together. She ended up having a respiratory infection, stayed in the ICU for a few days, and was sent home on some antibiotics. The second trip was very similar, but thankfully, without the ambulance ride. Both visits to the ER were very, very scary at the time, but ended up being alright. Short hospital stays are not very unexpected for Isabel since she is very vulnerable to illness, as many infants are. The difference is that when she gets sick, she gets really sick. This should hopefully get better as she gets bigger, stronger, and older.

In general, she is slowly getting bigger and stronger. She has gained about half a pound plus since she came home, is getting much longer, and thanks to some good physical therapy and regular home life, she is rolling over and gaining strength. She has been a happy, smiley girl, who loves to play with all of the toys that sat for so long waiting for her. She's smart and stubborn too. She plays possum by pretending to fall asleep with the physical therapist when she doesn't want to work. Little stinker! Her condition has also been improving medically. We have started weaning her diuretics AND some of her ventilator settings ahead of schedule. Currently, it seems that her teeth are catching up and she is teething...not fun, and yet glad to be worried about "normal" baby things. Looking forward to her 1st birthday...