So I’ve been in the hospital for 4 days having an adrenal crisis after a recent diagnosis of Addison’s disease. It’s been hell to say the least being stuck in a tiny room while my son is home sick and my daughter experiences her most stressful week before her big show and my husband tries to juggle it all. So as per usual I take to writing to get my feeling out. I call the below “Hospital”
It’s been over a year since my last post. If there’s anything I have learned about prematurity it is that even after the NICU everything is a fight. A lot has changed. We have moved, Beckham has grown, I am working again and the fight continues for his health, always. I’ve had to regain myself. Give myself time again to be me, to do the things I love. Slowly but surely I try to when I have the time but still feel I have a ways to go. There are so many new things I want to write about as Beckham grows but I want to finish his story in the Nicu as well. So I plan to do both as we go along. I will have the NICU series labelled separately and also write about the now with some flashbacks of what has been going on since we left the NICU almost 2 years ago. It’s hard to believe it’s been that long. Seems like yesterday. So, lets begin with where I left off from my last post “From Hope to Horror”.
It’s been three months since I started this blog post and 16 months since the next part of this story. I haven’t been able to wrap my head around writing about this experience. It was the worst day of our family’s life…
There is nothing more lonely than being a mom of a baby in the NICU.
Our Son was featured on CNN today enabling us to share our story with the world! We are over the moon to share is story of thanks for the NICU staff and everyone who has helped us and also as awareness for premature birth!
The story can be found here:
So I’m going to interrupt the telling of my sons story to share something that I have written for my son and everyone that worked with him in the NICU and out of the NICU over the past year. It’s hard believe he is here and he has reached the age of 1 (8 1/2 months adjusted). It’s a long poem but his story has not been short and every bit of it has gotten him here to this day. Happy Birthday little man and thank you to everyone that has helped us get to this point!
After the dust had settled from the day of Beckham’s birth reality began to sit in. We started reading up vigorously about micro preemies, percentages, what to expect, other peoples stories and more. Regardless of the percentages as I read other moms stories of their micro preemies I began to feel a bit of relief and maybe even an ounce of hope. Stories of people that we knew flooded in. People that were preemies, or knew someone with a preemie that had survived and was doing fine. All of this time we didn’t know any of these stories about our friends or their friends and relatives and now we were learning so much about them. The hospital had a library where I found a few books on prematurity and what to expect as well as real stories from the NICU. As we read through these stories we found the majority of them the babies had 1 or 2 issues and then were fine. It was reassuring and I hoped this would be the case for us.