7:00am – Grace did great overnight. No more apnea. They are going to try to ween her off of the high flow air throughout the day and may even let Jen feed her if they can get her off the air pump.
They are still planning on the cath procedure on Monday or Tuesday and it’s looking like surgery probably on Wednesday.
One more day with Grace 🙂
12:00pm – They have been able to turn Grace’s air flow from and 8 to a 2 through the day. That is super good. Jen even got to breast feed for a few minutes.
We keep hoping for the best. This place is full of babies fighting for their lives. They are all so tough.
8:00pm – A good day…
Grace was awesome today. She only had one breathing episode early this morning but then started breathing normal again.
She was able to eat a tiny amount from a bottle and they let Jen do a non-nutritive breast feeding to help Grace get used to sucking which will help her later after the surgery.
Her blood oxygen is staying at good levels. Overall an uneventful day which is a good thing.
We will be trying to get some sleep tonight;)
Being here in the CICU and PICU is a very humbling experience. We see all sorts of babies and children fighting for their lives.
Today, a child was brought in who had basically been beaten to death. He had no brain activity and they basically just kept him alive for the family to say goodbye and process the situation. The man who had beat him was at the hospital and was arrested for homicide. People in the waiting room heard hiatal king about how he was high on heroin and “just couldn’t handle the kid anymore.” It breaks my heart and I have tears flowing as I write this.
LIFE IS PRECIOUS AMD FAMILY COMES FIRST
We are experiencing a very challenging point in life but we are so grateful for each small miracle. I just share this so that if any of you are experiencing trials, which I know many of you are, you might be able to take a breath and remember the thing that are truly important and be grateful for the little things that make life beautiful.
No matter the situation life is precious and beautiful. Love it each step of the way.
She loves all of you!