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.
In the NICU there is no future, there is only present. It’s important for parents to adjust to this mindset of not being able to plan for their baby’s milestones or going home date because it will only lead to more and more disappointment. Easier said than done. As a project manager this was one of the toughest adjustments for me being in the NICU. I am a person that likes complete organization, to have things planned out and if anything changes all hell breaks loose. How can I not think about my baby’s future? Honestly, a tough adjustment mentally but emotionally it was easy. If I began to think about what the future held for my baby I would just start crying, so essentially it required me to create a mental block and focus on the now.
Staring down at a human, the size of a trinket statue you would see inside someones hutch, it’s hard to imagine it surviving. He had a full head of hair and was completely proportional. Many of the nurses commented on how good he looked as most babies at 24 weeks look like “alien babies”. He was very pink and his skin was so thin you could almost see through it. There was not an ounce of fat on him. Pure skin and bone. We could see his full rib cage and all. The doctor placed an ointment over the baby’s eyes and just as I was about to ask why he hadn’t opened his eyes yet the doctor read my mind and explained that since the baby is 24 weeks old his eye lids are still fused together and he cannot open his eyes for another week or so.
I have been debating in my head over and over how and where on earth to start with my blog again, especially with all that has happened over the past 6 months. Honestly, I still don’t even know. Everything was going well for us. We just had a nice birthday party for my husband over the weekend with friends and family. My health was about as good as it could get, careers for my husband and I were great (and still are), our daughter well… she’s always great, and our son was on track, looking healthy in the womb. Our surrogate was doing everything right. Eating healthy, moderate excersize, vitamins etc. She was sending us weekly photos of her belly growth so we could save them and see him grow. We recorded all of our voices reading books to him so she could put headphones over her belly and play them for him as he was around the phase where he could hear. A countdown to baby chalk block was centered on our kitchen table as we all took turns changing the number of days each day. We had yet to feel him moving in her belly but she said he was a big kicker. Kicked her 24/7. Everything was perfect. We were set for a follow up appointment January 19 at 8 AM with ultrasound to check on how our little man was developing.
January 19 he would be 24 weeks 5 days. Just over the half way point.