Posted (Tina) in All Posts on March-6-2008

UPDATE 3/7/08 5:00pm EST – We’re back in our apartment and all is good. We’ll give a full update on the new post tonight.

UPDATE 3/7/08 11:00am EST – We’re not in Kansas Toto, but you’d think we were. Just wanted to let you all know that we’ve taken shelter at Shands (the hospital) to wait out the storm. Just figured we’d be safer here than on the second floor of an apartment. Some of you called to ask if we’re ok. We’re totally fine, just figured we’d play it safe here. Latest radar is here.

Ella had a rough night, even scratched her forehead pretty good grabbing at her cannulas, but finally decided to sleep solid from 5:30am – 6:30am and then until 7:30am. So, those last 2 hours of beauty sleep carried us both through the day.

She had a good day complete with a bath and time playing with Grandma West. One thing that was new today was a belated Christmas gift from Grandma West – – a portable DVD player with Baby Einstein videos. It is great because it plays DVDs as well as CDs and can be strapped to her daytime crib or be placed in the car. Today, we just tried it in her crib and she really enjoyed it. I’m excited to try it in the car. We always have such a tough time getting her settled, so maybe it will provide a nice distraction.

The OT came to see Ella today and gave me a few tips to try and work on to strengthen her feeding. Most had to do with position, like placing a finger under her jaw, to stimulate better sucking. Today, she took around 60ccs via the bottle at various times.

We still have episodes each day (where Ella gets so upset and turns a blue/purple color). The one tonight lasted for a total of an hour. Looking back on this one and others, it almost seems like it is not a sole factor that is causing them. It is like a perfect storm of events, pain, tiredness, etc. and she just can’t handle it anymore. Either way, they are still so tough to endure emotionally. I look forward to the day when she can verbalize what is hurting her. Right now, it is an ongoing mystery.

Tomorrow is my last day of work. I’m glad it is so that I can refocus my attention back to Ella and close that chapter of my life. It has been tough to have an allegiance to both at the same time. There are people that I am really going to miss from work, but hopefully I will be able to maintain relationships with those away from the work environment.

When Ella fell asleep in my arms tonight after her episode, I just stared at her face. I could feel her chest moving up and down, a bit labored for breath. It is such a miracle that she is here with us and that we get to enjoy her.

I still don’t have a sense what the Lord has planned for her life. But He must have something amazing in mind. I reflect back on everything that she has been through in her short time, and all odds were against her. And yet, she is here with us. We’re so thankful.

Psalm 52:9
I will praise you forever for what you have done;
in your name I will hope, for your name is good.