The day started with a visit from Nurse Michelle. It was nice to see her. We walked across the street for a coffee while Josh watched Ella for a bit. It was refreshing to have a mini escape.
Ella had a great day for feeds. She took the bottle for 4 of her feeds, totaling 105ccs (approximately 3.5 ounces). She took 45ccs at once on the first feed this morning! That is her second best. Last Saturday, she took 50ccs at once. That gives us such hope. All of this requires lots and lots of patience, but Ella is slowly making progress with her feeds.
Another bit of good news: we have gone two nights with the addition of corn oil and have not seen any significant changes. Yesterday, her stools were a bit looser but today was normal. So we are hoping that the only long term effect is weight gain!
Also, I did some of the PT exercises with her today. The first few times, she was more receptive. We focused on her head control and she did really well. As the day continued, she was less tolerant and started to cry hard if I made her work. Oh well, at least we had a couple of good sessions. Hopefully if we are persistent and do this each day, she will slowly get stronger and it won’t be quite so much work.
Ella had a great time in the bath this evening. I think her favorite part is afterward when she is all clean, warm and gets cuddled in her towel. She is so smiley.
We took Ella on a short walk this evening as the sun was setting. Although the walk was short, Ella seems to be getting better and better with tolerating walks. I like it when we can take her in the car or have her go on a short walk. It gets her out in the real world and just slowly gives her some exposure.
I read today about another CDH baby girl that had her repair surgery. Looking at the photos and reading the details made it all come back to me. It seems so distant, and yet it was just yesterday. I don’t know the family, but I lifted up their baby girl to the Lord and asked for His guidance and protection for her and them. If you think about it, please say a prayer for this family.
Psalm 23
The LORD is my shepherd, I shall not be in want.
He makes me lie down in green pastures,
he leads me beside quiet waters,
he restores my soul.
He guides me in paths of righteousness
for his name’s sake.
Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.
You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.
Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD
forever.
