Category Archives: preemie diapers

Taking it in Stride

Posted on by petezappy1
8

“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!

Smooth Landing

Posted on by petezappy1
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Behind the scenes, while my priority was to get to the airport, my crew did everything to make that happen within minutes, hassle free,  even checking me in before I arrived.  My arrival in New York was the same experience.  Our close friends, Marty and Steve, were waiting just outside  the gate when I arrived.  They had me from LGA to NYU Medical Center in 15 minutes flat!  Upon arrival I walked into a crowd of 8 or so people. My sister and brother in law, and other close friends had been there through the whole ordeal. I dropped my bag and went to hold Mary as if  I hadn’t seen her  in ten years.

It was about midnight when I arrived and Mary was just coming to, Remy was not even 5 hours into the outside world.  The nurses at Tisch were so attentive and immediately got me in touch with a doctor that was in the operating room with Mary.  She asked if I wanted to come up and meet my daughter.  I told her to give me some time with Mary, and that once I was sure she was okay I would be up.   Still with every emotion racing through my head, I couldn’t wait to see Remy and didn’t want to leave Mary.  What would she be like? How hard would it be to meet my child and see her completely dependent on machines to keep her alive?  Was it safe for me to go there?  I didn’t want to get her sick!  Don’t get me wrong, all I wanted to do was see her, hold, and look at her.

Mary was moved to ICU and I wanted to make sure she got settled in before leaving her.   She was pretty out of it, going from general anesthesia straight to a morphine drip, so she would go from spurts of comedic inebriated moments to tearful moments of concern for our child, into screeches of pain.  Once she got settled in she was still pretty out of it from the drugs, so I went downstairs to meet Remy.

As a skier, who loves to challenge myself to my limits and feed off of an intense adrenaline rush, I can say that I was filled with adrenaline like never before.  The elevator could not have been any slower and I could feel my heart beating so fast.  It was an intense rush.  I walked into the NICU (Neonatal Intensive Care Unit) and heard some babies crying and in each section there were 4 incubator cubes.  Our Remy was in the last section.   I walked up proud, smiling standing tall, with a constant stream of tears running down my face that could have filled a bucket.   “Hello….. (followed by absolute silence). Hello Sweetheart!”   There she was.  All 2 lbs.!  She was covered in gauze around her head.  She had a ventilator down into her throat, and I.V. attached to her arm, tubes going into her belly, and band aids around her feet.  Her skin was as red as a chili pepper, literally.

This time, I won’t try to describe what I felt, except that I felt more than I can ever remember feeling, period!  The nurses explained to me what all of these tubes did, her condition, her color etc.  It may as well have been Charlie Brown’s teacher talking, because all I could focus on was looking at Remy until I heard the words “would you like to touch her?”  This is when I really knew I was a Father.