“It is 1:17 am, Friday morning. I’m so tired and need sleep, but I have great news to share! That said, this post will be a short one.”
The above is what I wrote a little more than 2 hours ago when I was about explode with excitement about how great Remy has been doing. I know that so many of you are following, and I wanted to share the great news right away. As I finished the post, and was about to hit publish, I thought let me just check in and call the NICU, just to make sure she is continuing to do well. Unfortunately, the news was not great.
The below is what my post said.
Remy has had a great day. When we arrived this morning we were informed that the seizures were reportedly stopped over night. This remained status quo throughout the day, until we left at about 8:00 pm tonight. Her white blood cell count was much closer to normal. She was still twitching, but signficantly less. She received her second blood transfusion from me today. This was only because her doctor saw no reason to make her work extra hard and possibly contract another infection, or struggle any more than she has had to. She would have most likely needed a transfusion in a few days anyway. Her final results from the spinal tap came back today. No Meningitis was found. She gained weight. She is up to a whopping 2.4 lbs! She is on a regular diet of .5 cc’s of formula per hour. Hopefully she will be taking another stab at Mom’s milk again in a day or two. This is all great news and definitely reason to be happy!
She will remain on Phenobarbital. We have been told she will need to stay on it for weeks, months, or even years moving forward. That will be addressed more thoroughly as time goes on and we learn more about her health conditions and her seizures. Regardless, this was the best day we have had since Remy was born. We were literally on a high today, and bursting with joy! My last post was very concerning, and justifiably so, but I just wanted to get this post out as quickly as possible to so that Mary and I could share the great news with all of you amazing people who have been supporting us from close and afar, whether through texts, comments, emails, phone calls, letters, hope, prayer and so on.
I wish that I was not continuing to write more. I’m not tired anymore. I’m wide awake and just want to be with Remy. Just a few minutes ago I woke Mary up to give her an update. After speaking to our on call nurse and doctor at the NICU. I was informed Remy had experienced heavy twitching for several minute straight, which showed significant spikes on her EEG. It is most likely more seizures, and even if not, still reason for great concern.
Normally, I would not even think about sharing this news online until we knew more. In this unique situation though, I just decided continue and get it out anyway. My objective was to just share the great news with all of you after my last post. The lesson learned here; Take things in stride. Be happy and grateful for the steps forward, but keep a heavy guard up and keep grounded somewhere in the middle, knowing that we are nowhere near, “out of the woods” yet. I want to scream so loud, punch a wall, and break something. My emotions could very easily be translated into a post full of four letter words. That would not do any good though.
We know (especially from speaking with other parent’s experiences in the NICU) that we will most likely experience more ups and downs, still we are so happy and grateful for today! Our little Remy is doing so much better, and we hope that she will continue down this path. We will meet with the doctors in the morning during rounds and most likely be discussing some new/additional medication for Remy. We hope that she will get more rest through the evening. I won’t sleep much tonight, if at all, but I don’t care about that.
The hardest part for me is watching my two girls go through this pain. I can handle heartache, worry, and the toughest circumstances life throws at me. I will remain solid and strong. I just want my Remy to be okay. I want her to be pain-free and healthy! I want to be able to take the tears and pain from my Mary and Remy absorb them like some kind of superhero. I think about Jeff Bridges in the movie Starman all the time. He was an alien in the body of human, who with his touch took pain and death away from other beings and absorbed it himself even though it made him physically weaker. When my little 2-year-old cousin Ty (now 3, and always fighting – http://tylouis.blogspot.com) was diagnosed with cancer 9 months ago and I started to witness what he has to go through. I had delusional day dreams that I could be Jeff Bridges character. I’m not crazy, I know I can’t, but that dream would cross my mind everyday, and now that I stare at my daughter everyday, I think of it all the time!
All of it, I would take it all of it away from them in a heartbeat, and endure it myself. It just doesn’t work that way. Life doesn’t work that way! F–K life for not working that way, F–K it………………………………………………….! I will just continue to be the best husband and dad I know how to be. I will hope that our little girl gets better.
Its was a good day after all. My girl is still a fighter, she shows so much strength and energy at times, even under such stress. I am still grateful for everyday, for every time she opens her eyes and looks at me. Let’s hope her sunshine glows through those rain clouds tomorrow!