It’s Monday morning.  My mother left this morning to spend today with my brother Johnny.  She spent the day with Mary and I yesterday, took us out to dinner, and then spent the night.  As always, it was great having her around all day at the NICU.  She’s been a tremendous help, and she has a constant gleam in her eyes, now that she’s a grandma. Since my last post Remy is doing much better.  We all went to bed happy last night and actually slept in kind of late this morning.

Friday morning we arrived to the NICU around 10am. Doctor Wachtel informed us that Remy did indeed have another seizure.  They decided to up her dosage of Phenobarbital.   Mary’s face was flush, and filled with fear and concern.  She kept telling me how much her heart hurt.  So did mine. It was stressful, but I knew the doctors were doing the best they could.  My way of trying to rationalize this to myself, and calm Mary, was that we would be crazy to think after experiencing frequent seizures that they would just stop cold turkey.  After all, that was the truth.

Still, this was the hardest day yet for my love, Mary.  Just over two weeks ago she had to go through an emergency delivery, after being told she could die.  She went through extreme trauma with a multitude of emotions, whacked hormones, extreme pain, and now her baby who should still be growing inside of her, knows life only through multiple machines.  Additionally, Remy has been through a lot of stress. There is definitely an emotional attachment and a void that Mary wishes she could provide.

That said, Mary was not in good shape.  I was extremely worried about her.  I had not seen her this upset, and just did the best I could to be there for her.  The good news was that Remy did not have any seizures throughout the remainder of that day.  You could tell that she was uncomfortable.  She looked exhausted, she was still twitching, and she was unable to kangaroo.  Remy needed her rest and at that point anything we did would have disturbed her.  We decided it was  best to leave a few hours earlier than usual.

When we got home at 7:00pm, Mary was out like a light.  She still got up to pump every 3 hours, but she pretty much did it while sleeping. She needed that rest, and Saturday morning she was feeling a bit more refreshed. Remy had not experienced any seizures through Saturday.  She was improving rapidly in all aspects, and looking better all around.  Suddenly, she had cute little cheeks. 

I was juggling work and visiting Remy. Mary got to kangaroo her and was all smiles.  Like I have said before, I’m so proud of how Mary has handled everything.  She feels everything her daughter is going through, and as I do, she wants to take all of this away from Remy and absorb it herself.  Mary’s actions everyday are a true testament to what a great mother she is.

Upon arrival yesterday we noticed that the EEG monitor had been taken off!  Yes! Remy had gone over 48 hours without any seizures.  Still, I felt a void for not being next to her when everything came off.  I wasn’t there to hold her hand and talk to her, in case she squirmed or cried while they removed the leeds that were glued onto her head.  Regardless, we were both ecstatic to see these gone.  On the other hand, we still worry that she could have additional seizures that will go unnoticed without it.  Remy’s situation comes with many double-edged swords.   “Trust the doctors, trust the doctors, but always question,” is what I always think to myself.  I want to believe they know what is in the best interest (and they do…), but I want to know everything (as I should.)

Mary and I fall more in love everyday with Remy and with each other.  This experience is testing us, but for the better. We continue to get support from so many of you in so many different ways.  We still tear up every time we read your comments, posts, emails, letters, and texts (Jeez Alejandro!).   We are immensely grateful for every drop of support.  Mary, Remy, and I have our gloves laced up, ready to take on whatever comes next, but are hoping for a great week, so we don’t have to use them.  Remy is tiny, but she is tough, and she keeps proving that.  As always, we remain happy and glowing about our little girl, Remy.  She is our biggest gift in Life!  Being a dad is easily the coolest thing ever, despite all the tough times we have had.

Check out the funny pic of Remy kangarooing and taking a nap with Dad.  Like father like daughter!

“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!