Today was Ella’s first Merry Christmas.
Nurse Marla was taking care of her today. What a great Christmas gift for us and Ella!
When we arrived at the hospital, she had just awoke from a sound nap. It was perfect timing.
From there, we spent a good 2-3 hours with Ella. She was such a good sport. We dressed her up in Christmas outfits, took photos, talked and played with her. She was in a great mood the entire time.
One of the things that she liked the best was for me to grab under her arms and raise her up and down. Nurse Marla noted that she probably likes it because it makes it easier for her to breathe in that position. Plus, it gives her a great view of things.
Her stats today were good. I think that they might have figured out the proper combinations of diuretics to give her via the g-tube.
She had a chest xray this morning that appeared a bit hazy, although they think that it might have been due to her movement & positioning. Just to make sure, they are taking another one tomorrow morning.
We still need to work on getting the feeding into shorter sessions and try a formula other than Portagen before we go home. We have stayed with Portagen this entire time because it had the least amount of risk for the chest fluid build up. Now that we are 2 months past that issue, we need to think about other formulas that will provide better overall nutritional needs for Ella (Portagen is not the best). We would like to try another option (even breast milk from when I pumped) and make sure she will sustain before we take her home.
Also, her oxygen may need to be weaned before we are discharged. She is currently at 1 liter. Most of the time, babies will start on 500 ml and be weaned down from there before being released.
Dr. Kays has been out for the past 10 days or so due to the holidays. We need him to return so that we can run some of these decisions past him.
The main nurse practitioner that has Ella’s case will be returning tomorrow. We hope to touch base with her and come up with a new, revised plan.
At this point, we are simply taking small steps each day toward discharge from the hospital. We hope and pray that it will be within the next couple of weeks. We trust in the Lord’s timing…and in His plan. She is such a sweet spirit and we are so blessed to have her in our life.
We had a great Christmas dinner with friends locally here in Gainesville (last night and today). Both nights, the company and food was awesome! We are so thankful for the friendship, love and support during this time.
Moreover, we are grateful that the Savior Jesus was born on this day so many years ago. He is the reason for the season.
Matthew 1:18-24
This is how the birth of Jesus Christ came about: His mother Mary was pledged to be married to Joseph, but before they came together, she was found to be with child through the Holy Spirit. Because Joseph her husband was a righteous man and did not want to expose her to public disgrace, he had in mind to divorce her quietly.
But after he had considered this, an angel of the Lord appeared to him in a dream and said, “Joseph son of David, do not be afraid to take Mary home as your wife, because what is conceived in her is from the Holy Spirit. She will give birth to a son, and you are to give him the name Jesus, because he will save his people from their sins.”
All this took place to fulfill what the Lord had said through the prophet: “The virgin will be with child and will give birth to a son, and they will call him Immanuel”—which means, “God with us.”
When Joseph woke up, he did what the angel of the Lord had commanded him and took Mary home as his wife. But he had no union with her until she gave birth to a son. And he gave him the name Jesus.
