Hey guys!
I havent' really updated you all in what little Ellie has been doing the past couple days (except for her graduating to a big girl bed). Although we still have quite a lengthy road ahead of us(we could be here 6-8 more months) she is doing good. It's been such a change from a week ago when they were telling us Ellie might not make it out of the heart cath. She is awake now and becoming very more alert. Yesterday she was sitting up in her boppy just looking around, happy as can be. She even smiled yesterday! What a precious sight to see. She is also starting to make some noises out of her trach. We even heard her cry a little. Daddy wasn't too happy about this, but when you have never heard one noise come out of your child, it melted my heart. Ellie got her shots yesterday and did pretty well with it. She was a little fussy last night, but that is to be expected. Her blood gas was great this morning, it was reading 42. That is actually too low for Ellie. The only main issue she is having today is tummy problems. They are on it though and as of this afternoon Ellie is feeling much better.
I told her nurse last night that to see Ellie on her boppy, it felt so normal. Don't get me wrong, I am still scared every single day. You don't have a child in the NICU and be filled with so many different feelings and emotions. What helps is to hear the word home. We actually had a doctor say to us. It was so amazing to hear because a week ago today we were told she wouldn't go home. Again, I have to stress we still have a very long road ahead of us. It might be Christmas before we come home. That seems like such a long time to some, but in the grand scheme of things, it's not. If it's Christmas, then that will be the greatest Christmas present Matt and I have ever received.
We still aren't sure what the next step is for Ellie. I think if her blood gas readings stay low, they will probably make some vent setting changes. Surgery wise we still aren't sure what they will do next. All of that is still in discussion with the doctors.
Thank you all for all of your support and prayers. This is not a easy road. It is more or less a very long and winding road, but God is with us. With Him on our side, we will never lose! All I can say is Amen to that.
Love you all,
Ellie's Mommy
