April 27 Update: 91 Days in the Hospital

Weight: 3645 g (8 lbs .5 oz)

After an unbelievably busy, overwhelming, and rather frustrating day, we finally made it home at 10:15 p.m.

Today he had his hearing screening test, which he passed overall but needs some more monitoring for one part of it. With Trisomy 21, it is common to have extra fluid and also a smaller anatomy in the ears which may have been the cause of him not passing part of the test. It’s not a big concern right now, just something to watch.

His labs were normal and the G tube is looking great. I attended a class on how to care for it and also learned how to give feeds through it.
At this time, the doctors and speech pathologist aren’t comfortable with Matthew doing any nutritive breastfeeding because of the silent aspiration they saw on his swallow study at McKay-Dee (apparently there’s a bit of controversy as to whether breastfeeding is safe for babies who aspirate with thinner liquids), so he will be on a continuous feed for now. Starting this afternoon, he will get 22 ml of fortified breast milk every hour for 24 hours through his G tube. And we will gradually increase the amount and decrease the number of hours until it’s basically back to what he was getting in the NICU: 64 ml over 30 minutes every 3 hours.

The main hold up today was his car seat test. He had to be in his car seat for 90 minutes having his vitals checked every 40 to make sure it was safe for him to travel.

Unfortunately his breathing was really fast so they decided to have him travel home in a car seat bed so he could lay flat.

When we got home, we started getting his feeding pump set up, and home healthcare sent a nurse to help with that and also someone to hook up his oxygen. It has been quite an experience for us and a bit of a learning curve, so we are so grateful for these wonderful people who came to help us get situated at such a late hour.