Eight weeks. Eight Mickey pictures (well, seven. Waiting on Mike to send me the last one)
I look back at those early pictures and it feels like a different lifetime.
I honestly believe there is some sort of NICU Amnesia that sets in. There are some days that I think to myself, "This hasn't been so bad... I wouldn't want to do it again, but it's easier than I thought." Then I look back to his first weeks of life, when he literally was at death's door, and it comes flooding back.
We very nearly lost him. We came way too close to not ever being able to see that sweet smile. Parker has been through the valley of the shadow, to be sure.
But he made it.
We made it.
Our homecoming is now spoken of as a certainty, and it will likely be sooner than later. This upcoming week is going to determine a lot about our departure date- he will probably be switched down to low-flow oxygen (which means more work for his lungs) and will be taking much more of his feeds by mouth (which means more work for everything). Depending on how he does with those two things, we could be out of there quite soon. In the middle of all that, he still has to be weaned on several medicines. The light at the end of the tunnel is getting closer.
I don't much like this tunnel, just to be clear.
In the months before Parker's birth, I had two possible outcomes in my head: 1) he will die, or 2) he will go home. It might seem like those are the ONLY two outcomes, but I should be straightforward and honest about number 2-- I thought, "he will go home... *in less than 8 weeks*."
I don't entirely know why I picked that particular number-- I think it had to do with our initial consult with Dr. Parker. He told us that the typical NICU stay for CDHers was sometimes as short as 6 weeks, but more often 8-12 weeks. Maybe it was that day, maybe it wasn't, but I settled in my head that if Parker survived, he certainly wouldn't be in the hospital more than 2 months.
I prepared my psycho mommy binder with 8 calendar pages. I lined up Jeremiah Care for 8 weeks. I made 8 weeks worth of freezer meals. My psycho mommy binder has no more pages. My Jeremiah Care rotation has ended, and it is now time to ask for help again. As the freezer has emptied, I've been using it as a countdown clock of sorts. (Somehow. those got off by 2 weeks-- largely due to the fact that each meal feeds us for several days with leftovers, so I have 2 weeks worth of food left. Yay!)
I pre-planned so much so that I could remove those particular stressors for the first two months. It worked FANTASTICALLY well. Now that the time is up, I'm not stressed about it-- there are plenty of people who are willing to help with Jeremiah, and there have been no problems whatsoever with him. Cooking dinner will be easy, now that I know how our daily routine works. I am comfortable with how our lives are chugging along, and I'm not worried about having to continue for a few more weeks.
I just don't want to.
I'm tired of our family being split all the time. I'm tired of STILL not feeling entirely like Parker's mom instead of a visitor. I'm annoyed that I allowed myself to formulate any sort of deadline. I'm annoyed that I am annoyed that we didn't meet my goal-that-wasn't-a-goal. I'm annoyed that I've already started thinking that we WILL be home by my birthday, doggone it.
I feel disappointed, but then I look back at the progress he has made in 8 weeks. I feel sad, but then I realize that he survived. I feel tired, but then I know how short a time 8 weeks really is. I feel whiny and grouchy, but then I realize that I've been able to witness a miracle. I have actually gotten to see God's hands at work, aligning people and circumstances so that His plan for Parker's life can start to take shape.
I've been reading over all the verses I had earmarked in preparation for this mess, and this one couldn't be better for my attitude this week. I especially like the way it is put in The Message:
"So keep a firm grip on the faith. The suffering won't last forever. It
won't be long before this generous God who has great plans for us in
Christ—eternal and glorious plans they are!—will have you put together
and on your feet for good. He gets the last word; yes, He does."
~1 Peter 5:10