Summing it all up.
OK, So it’s been a year since we wrote a post about Jack, and that’s a good thing. See, we haven’t been thinking about prematurity all that much lately. No more worrying that he could die at any minute, no lingering health issues, (although, we still aren’t totally free from the long arm of prematurity.) No Synagis, RSV, ROP, sleep apnea, none of that.
Now we are concentrating on dissuading him from the overuse of the word “NO” As in “NO! I don’t want to go to bed.” or “NO! I don’t want to eat my veggies.” He is just a completely regular, highly annoying, 3 year old.
We’ve been very very lucky, and we know it.
Now, if you don’t have, or know someone that has, a child that was born prematurely, then I can’t imagine what you’re doing here, but hey, poke around. You can read Jack’s story from the beginning. But first, do yourself a favor and go get a box of Kleenex, you’ll need it.
If you’re here because your child is in the NICU right now and you’re looking for something… ANYTHING… that’s going to provide you with hope that there is a light at the end of the tunnel, then keep reading.
This is going to be the hardest experience of your entire life. And it’s going to be awful. You’re going to think that you can’t handle it. You’re going to think that the life you imagined for yourself and your family can never exist. All of your expectations about parenthood are out the window and all that you know about how to be a good wife/husband no longer applies.
We’ve got three pieces of advice for you:
1. You are now on the world’s worst roller-coaster ride. You’ll think everything is fine and then you’ll drop off of the edge. Jack started off breathing on his own. I was like, “Well, this is no big deal. He’ll be out of here in no time.” Then after 3 weeks his heart stopped and he went on the ventilator for 5 weeks. It could end at any time. For us, that was the hardest part leaving the NICU thinking that it might be the last time that we saw Jack alive.
I know it sounds impossible, but you have to accept that you’re living with the possibility of losing your child at any given second. The NICU is an environment that can push the most even keeled of people over the edge, don’t underestimate it’s impact. If you’re there for 5 days or 147 days, take care of yourself, celebrate even the smallest of victories, no matter how hollow they seem.
2. The nurses…. Jack had absolutely FANTASTIC nurses. Sure, Jack had great doctors, and their tolerance of our questioning, challenging and hovering over their treatment of Jack was wonderful. But the nurses, they were the ones that were there with him 24/7. They were the ones that re-started his heart when it stopped. They were the ones that bathed, fed and cared for him for the first 71 days of his life. Do whatever you can for your nurses.
Every single time I went to the NICU, I brought a huge thing of Starbucks coffee and a pile of fashion magazines. I wanted Jack’s nurses to be thinking about him and us as much as possible. They work hard, long hours and even something as small as a cup of decent coffee goes a long way for them. We kept Jack at the top of their minds the whole time he was there. It helped.
3. Other people don’t fully understand what you’re going through. Talk to them anyway. Stay present, stay focused, don’t turn away from your family or your baby, even if you want to isolate yourself from the fear. Talk to your spouse, they’re just as terrified as you are. And most importantly, You are not alone. On the margins of this page are links to some other preemie blogs and I’m sure there are a lot more out there now. Leave a comment on one, you’ll find a friend. Promise.
We want the very very best for you.
With our deepest love.
Archie, Sarah and Jack.