Today was a hard day. Not like last week. Last week we didn't know what we were facing. Last week I was completely spent...undone. Tonight I'm just weary.
We took a step backwards in feeding today. I came in hoping to see the feeding tube removed, but instead Levi had just had the last bit of his milk by tube. At the next feeding he took only 15 ccs by bottle (instead of the 56 he is required). We gave him his next feeding completely by tube to give him a break. Another feeding by bottle and tube...and finally, at his last feeding he took it all by bottle.
I want to scream at them...He's a baby, not a machine! If he's not hungry, just give him a break.
This is the last hurdle before we get to bring him home. Assuming nothing else moves backwards, of course.
God has a way of reminding me to put things in perspective, though. A grandmother in the waiting room who is hoping her granddaughter will come home by December. A dad in the hallway who answers my question with, "We're doing okay...we're thinking just one more month."
Improvements today...Levi was even more alert. We just stared at each other for the longest time. He is absolutely perfect. He was coughing again when getting choked which is a really good sign for muscle tone and the improvement of his aspiration issues. I'll talk to the therapist tomorrow about possibly switching to a thinner liquid or being able to slit the nipple so it's not so hard for him to suck it out. That should help with the feeding issue.
"But those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." -Isaiah 40:31
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