Ellis Update-7

One week. When we first got to the hospital they told us they thought we would be in ICU for about a week. Yesterday marked a week and we are nowhere close to going home. I wish we were. I miss home. I miss my son. I'm so tired of being at a hospital. Here's the thing about progress, it's a tricky thing when you're talking about an ICU patient. It was the same when my husband was in the ICU for weeks and weeks. You take three steps forward and two steps back. When you look objectively you know that even at that pace you're still one step ahead from where you were. But when you are sitting in a small room all day long, knowing you need all the forward progress you can get, the steps backward can be absolutely maddening.

Yesterday, right after I blogged about the progress in Ellis' seizures, her Neuro team came in and told me she'd had some more seizures. In the grand scheme of things they're better than they were when she walked in on day one, but they still aren't where they need to be.

We were able to get some of her meds lowered but not completely off.

Her vitals were good, but we still had some low blood pressure incidences.

I would be lying if I didn't say it was a frustrating day. I've been told by the nurses that each day she's getting a little better and we are headed in the right direction. It doesn't feel that way some days. The progress is so minimal it can seem non-existent. Some days I struggle on how to update you. I know you want to see tangible results to your prayers. As do I. But most days there's just not a ton of movement for her. When I say baby steps, some days they are the tiniest of steps, but I try to remember it's still steps.

Truth is, as far as we've come, we've got so far to go. So far. Some days it seems like we'll never get there. If any of you have ever gone through an ICU stay with your loved one, you can probably relate to every word I'm saying. If you haven't, my words probably aren't as familiar to you. I also pray you never have to. It's frustrating and exhausting.

I'm not trying to make this post seem negative, it's just that sometimes I really am at a loss for what to say, and I always want to be real. We are still praying for the same things, believing for the same things, I just want to start seeing it come to fruition. If you want to know what to pray for us, it would be that.

The other day I heard a baby cry in the ICU. It was excruciating for me. I want to hear my baby cry. I want to hold her. I want to see her smile. I want to have her smell like yummy baby lotion. I want to look into her big beautiful eyes. I want to rub her soft little fuzzy head. I want to get the kisses she would give me when she was trying to distract me from burping her. I want her to hold my hand with the fierceness that she used to. I want her to nuzzle her little head between my chin and my neck and breathe contently. Deep beautiful warm soft breaths. I just want my girl back.

So faithful So constant So loving and so true So powerful in all You do

You fill me You see me You know my every move You love for me to sing to You

I know that You are for me I know that You are for me I know that You will never Forsake me in my weakness

And I know that You have come now Even if to write upon my heart To remind me who You are

So patient So gracious So merciful and true So wonderful in all You do

You fill me You see me You know my every move You love for me to sing to You

Lord, I know that You are for me I know that You are for me I know that You will never Forsake me in my weakness

You Are For Me-Kari Jobe

IMG_6736.JPG