As for feedings, that has been a little more of a struggle for the little guy. Saturday he was given a 'day of rest' when it comes to how hard he has to work to eat. Because he is a 'heart kid', every time he eats, either nursing or from the bottle, it is like he is running a marathon, or at least a 5K. He has to work very hard to suck, swallow, breathe, while still maintaining his oxygen levels throughout his body. What the 'day of rest' meant was that for 24 hours, Weston didn't work at all to get the food to his tummy but received all of it through his feeding tube. His body still had to process everything and his stomach did fairly well at keeping everything down.
Sunday we gained weight!! It wasn't much, but it's heading in the right direction, so hopefully that means Weston's 'day of rest' helped his body not work so hard to put on calories. From Sunday morning until Monday morning, Weston was given one feed through his tube so he didn't work, and then the next time we offered him a bottle so he is still working on his oral skills. If he didn't take all the calories the doctors are saying he needs, then he got the remainder through his feeding tube.
Monday morning we gained weight again! 2 days in a row! We are leaving the feeding plan the same throughout today and into tomorrow morning when Weston will be weighed again to see if the plan continues. Until this evening Weston was doing a great job of keeping everything in his stomach but the last two feeds he has spit some of it back up. We are trying to pay attention to how much movement he gets after eating and seeing if that is why his stomach is upset or if there are other factors we need to be aware of. Everyone just wants him to get the calories he needs in order to gain weight. We will see how the feedings go throughout the rest of night and into tomorrow morning.
The hardest part right now for both Jeremy and Ellie is that we can't do anything to help Weston learn to eat or keep his food down, or to make this process go any faster. We have to let Weston take his time and learn how to do this on his own. It's not easy and either of us would do anything to help fix it if we could.
We had a Care Plan Meeting today where everyone was finally in one room at the same time. It was helpful but we still don't understand why it didn't happen a week ago when we first came upstairs. We partly feel like we've lost time and now, unofficially, will be here another week or two, still depending on Weston, but being realistic in his goals. It's not easy to think about staying another week but we don't really have an option.
Yesterday (Sunday), Ellie asked if we could put clothes on Weston since he doesn't have the oxygen tubes and most of the others are much easier to move. The nurses said that wasn't a problem so here are a couple pictures from the last couple of days of Weston wearing clothes!
 |
| His shirt says "See you later alligator!" |
 |
| I wish it said "Aunties" even if his face doesn't show it. |
 |
| We both got a laugh out of this one. Jeremy was holding Weston and once we put him back on the bed to change him, this is how he looked...not very swaddled, huh? lol |
Thanks for the continued cards, gift cards, gifts of money, prayers, kind words of encouragement, and visits. They are all greatly appreciated and noticed. Keep them coming!
No comments:
Post a Comment