5 months 1 week

Rhys hanging with DaddyAttempting the hospital bottles a few days ago...
He didn't appreciate the cheek support but
couldn't do it on his own with these nipples.

First, thanks to everyone for their suggestions. Believe me, I have checked them all out! Today was a better day for Rhys' feeds. He had a pretty good night and then was more consistent with the amount he took today. In addition to him having problems keeping his mouth sealed I think he was not getting enough milk and he was getting frustrated and sharking his head back and forth. Cody and I stuck with the Born Free bottles (since we already had them) and bought the level 2 flow nipples to try to get past this issue. The nipples for these bottles go from 1 to 5 so this one is slightly more than 1, but definitely not fast flow. It seemed to work quite well today so we're hoping it isn't a fluke. Rhys was much more calm while eating (except when fighting his tummy pains) and was doing well pacing himself with sucking, swallowing and breathing. He took 2 ounces at his 6pm feed in 20 minutes with little interruption. Woohoo! Hopefully this will do the trick and we can move forward with his feeding. Who knew choosing bottles was such a pain??

Rhys got his Synagis (RSV vaccine) shot yesterday, to the tune of a couple thousand dollars. I'm glad we're not having to pay for that. Overpriced drugs are something I get on a soap box about so I will leave it at that. There are 6 shots throughout the year for the vaccine and he will finish out the rest of this year (three more shots I think) and then start again next season. He also got a consult from the pulmonology team today. They were called in to take a look at the chronic diuretics Rhys has been on for the last couple of months. They said they agree 100% with how Rhys' doctor has handled things and also said his lungs "sound great". This is amazing to me given the degree of chronic lung disease Rhys was fighting. The team would like to follow-up with Rhys after discharge to monitor his oxygen and diuretics and eventually discontinue them. She told me that once these babies hit the 11/12 pound mark it is amazing how fast they progress. We will get an x-ray and blood gas before discharge for a baseline for comparison purposes.

The oxygen concentrator was delivered today and I was pleased to find out that it isn't an enormous oxygen tank like I was anticipating. Instead it is a smallish rolling cart that can easily be moved from room to room. In addition we will of course have the portable tanks for when we're away from home. I am feeling better about the home oxygen. My biggest concern was that I thought Rhys was going to be sort of tied to one room or the other but that isn't going to be the case. We have a 25+ foot tubing, plus the flexibility of moving the cart around the house. I am even feeling really good about his oxygen saturation lately and rarely look at the monitors at the hospital anymore. After him being attached to this thing for the whole of his life, this is a big deal!!