A MicroPreemie Story: 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…

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A MicroPreemie Turns One!

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!

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A MicroPreemie Story: The Honey Moon Phase

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.

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Picking Myself Up – Part 1

As the year is winding down and I contemplate all that happened in 2015 and all that is to come in 2016 I came to the complete and obvious realization that I have been stuck in a rut. And not just an “my disease has progressed” rut. More of an ” I have given up” rut.

As I sit on my couch watching yet another Netflix marathon with my ass molding into the couch that I seem to be glued to now a days I can’t help but feel utterly pathetic. I think to myself I need to at least try and accomplish something today in the house or get outside but I just can’t seem to get the energy to do so. Sure, part of my lack of energy I can attribute to the fact that my joint pain has increased lately. My kidney pain is what it always is and my overall condition is doing what I expected it to be doing at this age. Things are taking their course as I knew they would… but what the problem really is, is my attitude. My drive to fight. To do, well, anything.  I sit and think about where my energy has gone, and why I have put on these 6 pounds that I can’t get off, I mean nothing has changed right?

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