wednesday 7/31/2013

Hardly any changes. Her oxygen needs are the same. She is still on 3 Liters on the high flow nasal cannula with oxygen needs ranging from 21-40%. Her morphine and versed doses are the same. Yesterday they started feeds at 10mL every 3 hours..which is a third of a tablespoon, so hardly anything, but it seems to be moving through. Today they added one mL at each feed, so she was up to 13mL by 5pm, so she should be up to 19mL by the time they round again tomorrow and who knows if it will be increased a tiny bit more. Since food is moving through they also added propranolol orally (NG) to help her blood pressure. Since they sent baby Vanessa packin' hehehe, a spot opened up for Ava on the long term care team (I don't know if that's really true, but she was gone today and we've been buddied with her for a while). The long term care team is a group of about 6 babies who are "in for the long haul"..whatever that may be. It seems that babies qualify after about 3 months of age because a lot of the micropreemies are sent home after roughly 3 months. So our little team seems to have mostly babies with congenital (genetic) disorders that are rather complex. The advantages are that Ava will have one of the same 2 nurse practitioners 6 days a week, which is great for consistency. Also she gets access to some of the more limited therapy toys. Today Karine snatched Ava her own ipad. I was far more excited than Ava was. Shaun is downloading family pictures and family home videos for Ava to watch. I've requested that they remove the disney movies. She also has pandora and other baby aps. She cannot, however, facetime through it because of privacy concerns (HIPPA violations). The disadvantage of the long term care team is mostly psychological for me, in that I have to accept how complex Ava's issues are, and that I cannot even guess when we'll get to go home. I tried to gauge from the nurse what we have ahead, and of course she was very vague. So I told her I was asking because I was wondering if I should bother signing up the boys for pre-kindergarten here, and without a beat she said, "oh yes, sign them up for pre-kindergarten." Sigh The preschool in the PUBLIC school on this road is 225 a month per kid-blah. The YMCA was 400/mo. I've got to scour the city.  William needs some speech therapy, so we'll have to figure out how to weasel that in. I'm exploring swimming lessons, ice skating, and indoor soccer too because the boys just go NUTSO in this tiny apartment. They are literally climbing up the walls (barefoot in the doorways) and bouncing off the walls (William realized that the bedroom door doesn't really latch so he thinks he's really strong when he runs across the living room into the door to make it fly open.)