Recently, I ran across this piece I wrote, intending to post as an update on Facebook. However, being that it was one of the lowest points for me while in the NICU, I never could bring myself to share. Now, having been home with our girl for almost 5 months, it’s time to share, because if I can even help one person with this crazy rollercoaster story, than that is what it is for. I’ve left it relatively untouched to preserve the emotions of the day and of this season in our lives.
I’ll never forget this day, and I’m so grateful I have this to look back on and remember how far my baby girl has come. The ups and downs of the NICU has shaped Amelia’s story, and mine. Days like this when I felt like God left me hanging, now I can see where the days He was working the hardest, orchestrating beautiful relationships, pulling me closer to Him, and pushing me deeper in love with my little girl.
NICU Life is Like a Rollercoaster
They told us it’d be a rollercoaster. And that is the correct description. And for this particular ride, you don’t get to be in the front so you can see what is coming, and you don’t get to ride in the middle either, that lessens the true experience. No, you and your spouse are riding in the last row. You have no idea what is going to happen next and you feel each drop and curve intensely, like you’re being whipped around through the entire ride.
As you crawl to the top of the first drop… it’s exhilarating, intense and so suspenseful. You can’t see the drop in front of you or what is going to come next. On our ride, that first drop was just a teaser. We really lucked out! It wasn’t until we really got going that we had our big drop. We stayed low and whipped around, went over some little hills, finding our moments to turn to each other and laugh and smile.
But little did we know we’d be climbing another big hill that was to have a big drop just on the other side. As you ride along, you know a drop is possible, but you hope it’s not going to happen. Surely it’s going to level out. Nevertheless, this ride had another drop in store for us.
Sept. 28, 2017: Day 58
Amelia needed to be to reintubate. It happens. More than once. Heck, this was her fourth trial off. But this reintubation hurt worse than the rest. This was 52.5 hours, her new record. I know my baby girl is tired, I can hear it in her breathing… I want to fix it for her, there has to be something I can do!! But there’s nothing. Only time will heal her.
So again I must be patient. As we slowly climb the next hill of our rollercoaster. Fingers crossed the next drop won’t be as bad as the last. But also reminding myself there WILL BE another drop. Thinking there wouldn’t be is just unfair — to her and to myself.
Moving Forward, Heads High
A man I respect once told me, “We must avoid the high highs and the low lows of life.” That really resonated with me at the time (over 5 years ago) and I’ve tried to live my life to reflect that. When I don’t swing so far to either side, I can handle what is in front of me much better and can continue to be helpful to those around me. But it’s never been as much a reality as it has been the last 8 weeks here in the NICU. Not that you need to live life waiting for the other shoe to drop, but it’s a good idea to have a healthy fear of the next possibility and to just live in that day, or hour or even 15 minutes.
It’s painful to share all of these things and to leave myself and our family exposed in this way. But the truth is, I don’t know what to do anymore. I don’t know what we need and I’m tired. I know we have lots of people praying for us and I need you all to know that those prayers are appreciated more than you know. Amelia is truly doing well and she continues to be feisty. Ups and downs like these are expected — don’t stop praying. And know that we are truly thankful for the community God has brought up around us. We love you all.
5 thoughts on “Life in the NICU: A Real Life Rollercoaster”
And we love you too – stay strong!
You made me cry… But I love the faith you have!! And my love to your sweet baby!! I hope she is doing well. I can’t imagine myself in your shoes. God knew you could bear it and come out of it in faith. I appreciate you.. God bless you and your sweet baby!!
Thank you Sara, you are so kind. I’ve learned so much through all of this and know He has never left us.
I’m praying for you right now. My heart breaks for you. There is nothing worse than watching your child suffer. I would gladly take my child’s place if that happened. Keep going. You can do this. God is holding your hand even as you read this. He will give you the grace to do this one day at a time.
Thank you for the kind words Julie! It’s been quite the journey!