We couldn’t have asked for a better early Christmas present. Ella has had a good day, and we can just tell she’s doing better. We’re not the only ones confirming this…the nurses who have taken care of her the last few days can see her improvement. Of course, some real confirmation also came when nurse Marla indicated that she looked better. Marla knows our girl well, and our girl knows Marla well =).
Ella’s feeding has been adjusted back to be administered over an hour period. She was at the point of receiving her full amount of food over a half-hour period every three hours, but she seemed to be retching more.
What’s been somewhat of a concern is the inconsistency in how she has been fed. Some nurses will feed her directly from the pump, right into her G-Tube, while others have the pump drain into a large syringe (no needle) connected to her G-Tube which allows gravity to push the food in her belly.
The first way (pump to G-Tube) makes sense from both a control standpoint and to slowly expand her stomach during each feeding, but it also forces the food into her belly which may be a problem if her stomach is not stretched enough.
The other method (pump to syringe to G-Tube) seems a bit easier on Ella, but I don’t think it’s doing the job in helping her stomach expand.
Considering we were seeing the second method used more frequently then the first, it makes sense to me that Ella would have issues with her feeding over a half-hour period when pushed in using the pump to G-Tube method. Maybe working back using this method consistently will give her what she needs to move forward.
These inconsistencies have been magnified as well with the holidays due to frequent staff changes. We’ve had multiple nurse practitioners over the last week that manage Ella’s overall care. This makes it challenging because specific care plans from one nurse don’t always make it to the next.
We’re hoping our girl can push past all these things and get well enough in the coming days so we can take her home here in Gainesville. Tina and I both feel that the best thing for Ella is constant consistent care, and it is this routine that will enable her to move forward. We’re excited about the idea of having her home all to ourselves, and anxious to see her take the next steps, especially the one that takes her out of the hospital.
Tina and I spent the bulk of the day getting things unpacked at the apartment and running errands to get ready for the big day. We don’t know 100% when that day will be, but we know it’s soon which is why we want to be ready (ready as much as we can be that is).
We spent some time with the Bun late in the afternoon. She was awake for most of it, and seemed very content and comfortable. Tina pretty much held her the entire time we were there, something that Ella didn’t really mind at all. =)
We left at shift change to go have dinner with some friends and their family. It has meant so much to us to have people open their homes and let us spend these special times with them. We’re so blessed to have them in our lives and know that they will continue to be there for many years to come.
Thanks to all of you for the love and support over the last 154 days. Your thoughts and prays have brought us so much peace and strength through this time. We look forward to the day we can share the incredible gift of Ella Renae in person.
God Bless you all, and Merry Christmas!
Luke 2:8-15
That night there were shepherds staying in the fields nearby, guarding their flocks of sheep. Suddenly, an angel of the Lord appeared among them, and the radiance of the Lord’s glory surrounded them. They were terrified, but the angel reassured them. “Don’t be afraid!” he said. “I bring you good news that will bring great joy to all people. The Savior—yes, the Messiah, the Lord—has been born today in Bethlehem, the city of David! And you will recognize him by this sign: You will find a baby wrapped snugly in strips of cloth, lying in a manger.”
Suddenly, the angel was joined by a vast host of others—the armies of heaven—praising God and saying,
“Glory to God in highest heaven,
and peace on earth to those with whom God is pleased.”
When the angels had returned to heaven, the shepherds said to each other, “Let’s go to Bethlehem! Let’s see this thing that has happened, which the Lord has told us about.”