Today was a nice day with the Bun.
Ella had a restful night of sleep. We gave her a bath today and went outside for a 15 minute walk since the weather was perfect. She seemed to tolerate both well. In general, she was just in a good mood. Also, we decided to put her in the car while we ran some errands. The more we can get her used to the car, the better.
While I stayed in the car with Bun, Josh went upstairs to the pediatric floor of the hospital. A friend that we met in the NICU last December had her son readmitted. Initially, his CDH was less severe and he was only in the NICU for about 1 month, but he returned due to some complications with scar tissue. He had surgery to repair his intestines and bowels the other day and is in recovery on the pediatric floor.
Unfortunately, it is just as tough for her as it was for me at the beginning of February. The nurses are not attentive and you cannot leave your child because it is not a locked down unit. So while her husband and 2 others sons are 2 hours away, she is trying to live in the hospital room with her baby boy and hope that he heals well.
It is that lonely feeling where you feel like you have no support, yet you are in the hospital. It is such a culture shock from the NICU.
We felt led to visit her in the hospital and bring her a bag of goodies, just like some friends did for us. If you remember, please pray for her and her baby boy (Hope and Jayden).
Again, we have only been home with Ella for 29 days total. Yet driving through the parking structure, it had felt like an eternity since we had been there. I was happy to have that feeling. I do not miss it, that is for sure.
We have been doing well with her food intake this week. Although her oral skills have not improved, it is a great milestone to be intaking 550ccs each day. She is still retching and having some discomfort, but it is tolerable. Please pray that she will have gained weight when we go to see Dr. Kays on Tuesday.
I wish the weekends just continued and continued. It was nice hanging out as a family today, just the three of us.
We will miss the Grandmas – – they were a great help with Ella and to us by cooking, cleaning and just giving us support and love during the past 2 weeks.
All of us set our clocks forward today and it made me reflect on how in an instant, we will not be fast forwarding an hour, but months or years. I’m hoping and praying that these initial days of her life are the toughest ones for Ella and that as each day passes, her health issues will become less and less.
Nahum 1:7
The LORD is good,
a refuge in times of trouble.
He cares for those who trust in him.
