I know that many of you who wanted to be there for Remy’s Memorial Service and could not.  We are very grateful and touched by the outpouring of support we have been receiving everyday from so many people.   Remy’s ‘purpose’ will always remain important to us.  I have posted my Eulogy below and hope that in reading it you will gain something in your own personal lives in someway.

Love Always, Remy Mary and Pete

Remy’s Eulogy:

I never expected to be standing here in a church in front of so many people speaking about the passing of my daughter.

Just the same Mary and I never expected to be standing atop our little girl laid in a tiny coffin, in the perfect little outfit that Mary and I always wanted to see her in…………the night before we are to bury her.

Kissing her one last time, and saying goodbye.

As Remy grew sicker than ever before, about a week before she passed…….. both Mary and I realized that her chances of staying with us were getting slim.

In our own way we either prayed or hoped for a miracle, and spent every second working with the medical staff, who became more like family, trying to find a way to save Remy’s life.

Remy had been sick before…..

In fact, she had been so sick —-that we were often called into to meetings to discuss the realities that she might not recover, or might have severe permanent damage that she would never recover from.

We talked about things like DNR’s and had to learn about drugs and treatments that we never wished we had to.  It was a crash course that we didn’t want.   Should we raise her Dopamine?  Is she getting enough Phenobarb? Should she get another bollist of Lasix, or Bumex or Hydrocortisol?  Will her maps ever go up, so we can get her off the Eppy Drip?

No matter what drug it was, while it helped her in one way, it was always killing her in another way.   Unfortunately as advanced as medicine has come it still wasn’t enough!

But like I said, she had been here before and she made astounding recoveries.

Nurses, doctors and just about everyone in the NICU were taken back by the great strength Our Little Sunshine showed us!

It wasn’t just to comfort us.

It wasn’t a line they used with us.

We know that there was a level of comfort needed when we were approached about the subject of Remy’s health, but there was also a very clear level of bluntness and honesty that was necessary.

In the end- Remy’s organs were not well enough for her to carry on.

Despite all of her problems and conditions her heart and her brain were so strong and so powerful.  She responded to us everyday.

Even in her weakest moments.

Mary would constantly ‘eat her face’, which in other words meant kissing her over and over and over any chance she could get.   Remy responded all the time.  She would kiss back and stick out her little tongue and wiggle her lips.

For me–

There was nothing more I needed in Life.

I have never felt anything so powerful as what I felt when I watched that.     When we placed our finger on her toes she would curl them so tight we could actually feel a grip.

When we placed our finger in her palm she had a grip stronger than some adults I know.  I’m not kidding!

The thing about Remy is that she wanted to Live.  She wanted SO VERY MUCH, SO VERY MUCH to live.

Everyone takes a different journey through life and everyone faces his or her own individual challenges.  Remy faced challenges from the moment she was born.  Challenges far greater than what I have ever faced and ever will face in my lifetime.  Somehow————– in her little body with two bad lungs, failed kidneys, intestinal failure, cysts, seizures, blood clots and more there was a soul of a Giant!   In her most difficult moments (and friends, family, unless you saw her up close it is very hard to explain how sick she looked and became) EVEN STILL she Always

And I mean Always…………

…..found a way to express her strong will, her love, and fought even to her very last breath.

Fight,

Heart,

Love

These are the things that Remy was made of.

It’s easy……………………………… ‘to take for granted’ and to  ‘Forget’ the things in life that are so important.

It’s also very easy to get into the habit of believing that everyday stresses—–

—a satellite dish going out, a car breaking down, getting stuck on the subway, or being late for something are really so important or stressful, when in reality they are not.

Don’t get me wrong.

I’m not saying that the little things cannot be frustrating.  It’s not my place to stand here and judge anyone’s situation, or what he or she may go through on a day-to-day basis and what may tip the iceberg on any given day.

What I am getting towards is a greater message…

Remy

IN LIFE

has touched Mary and I in a way that even with great expectation and preparation we did not know would be such a great privilege.  Not only did she affect us, our immediate family, and closest friends, but so many others.

Yes…her story was out there for many to see.  But so many people were not affected because I wrote about her; it was because she GAVE me something to write about.

Something amazing!

Something inspiring!

Something precious!

100 days ago to this day Remy was born. 95 of those days we were blessed with her presence. The change that took place during our time with Remy has made us greater human beings and lesser human beings through one shared experience.

We are lesser because:

We have a permanent whole in our souls that will never be replaced.

We are greater because:

We became parents.

We are greater because:

We have grown closer together as husband and Wife than I could have ever imagined.

We are greater because:

We learned what real love really is.

We are greater because:

We learned the true meaning of life.

I have witnessed that the Mary, the woman who I and so many others in this world love so much has another layer to her, another dimension to her, that is astounding,

Astounding!

She was

and ALWAYS WILL BE the role model, the definition of what a Mother should be.

You wouldn’t measure her against a pedestal, because she is the pedestal.

Through so much pain we been touched by the gift of human compassion over and over and over and we feel it right now more than ever.  We have always experienced that compassion and love from so many.

But Remy was and STILL IS a magnet to the mere notion of compassion.

And what we have witnessed and experienced in the form of pure humanity; simply because of Remy’s existence is astonishing!

I almost lost my Wife.

I did lose my child.

We will never have the answers we want. The answers we get will never fill the gap that we will have for the rest of our time on this earth.  If I was given a millionth of a second to take the chance to trade places with Remy I wouldn’t be standing here reading this eulogy.

Instead both Mary and I must live with this void until our time comes.

Right now we are in immense pain.  We go to sleep and wake up wanting to die.

Literally.

We can seem okay one moment and break down the next.  We have anger, towards God, we feel cheated and robbed.  The emptiness we feel cannot be justified in this eulogy.  THAT ……………………………………………..Is an impossible feat.

In one of my last posts you may have remember me writing that “We never even had a clue how strong our love was until that love was being TAKEN AWAY FROM US!”

That is the best way I can express our feelings.  Mary and I have also died in this experience and that is inevitable, but unlike the fact that we did not have a choice whether Remy lived or not, it is up to us how much of us in our own selves’ die.

With great loss, can also come great gain, If we choose to accept it, to nourish it, to learn from it, and to grow from it.

I don’t know what tomorrow will bring.  I don’t know how we are going to get through this except that we WILL.  And we will get through it TOGETHER.

We could have had a small ceremony.

Private, alone and isolated.

It would have been easier.   Everyone would have understood.  We could have pushed away our friends and family all week who took such great care of us each and everyday. But we love all of you dearly, and if Remy were here to grow older with us she we would have shared her with all of you as much as we possibly could anyway.  That’s the only way we know how to live.

Remy means way too much to us.   While we will not be so lucky to celebrate great moments on our baby’s life and enjoy the little nuances and things that a Father and Mother do with their children, Remy was and still is too important to us to forget.

Most of you— Mary and I will see again soon, some longer.  Regardless of that it is Remy’s message

Remy’s PURPOSE that Mary and I want to continue.

Please, if you do anything when you leave this Memorial Service, do one thing.

Do Not forget!

REMEMBER!

Remember to cherish what and who have in your life.

Remember to realize what is and what isn’t important.

Remember to care, to love and to try.

Remember to fight when you feel it is worthy.

Remember REMY………………  because if you remember Remy you will remember what is important in your own life and by doing that you will make the world a better place!

A Memorial Service in honor of Remy Elena Zappulla will take place on Friday, June 3, 2011, at 9:30 am.

The service will be held at the Oratory Church of Saint Boniface in Downtown Brooklyn at 190 Duffield Street, Brooklyn, NY 11201.

Following the service all are welcome to follow to Maple Grove Cemetery, Kew Gardens, where Remy will be laid to rest.

Nearby parking accommodations and directions to the cemetery are listed below.

http://www.oratory-church.org/

http://www.maplegrove.biz/

If you would like to donate in Remy’s honor please make a donation at the below link for the March of Dimes.  You will also a receive a bracelet with Remy’s name on it.

https://www.marchofdimes.com/prematurity/b_new.asp?band_id=69427

We are and always will remain grateful for your support!

Services in honor of Remy will be held on Friday morning at the Oratory Church of Saint Bonafice located in Downtown Brooklyn:                        

190 Duffield Street, Brooklyn, New York 11201 followed by a burial

http://www.oratory-church.org/

 Details will be posted on the blog by tomorrow evening.

 If you’d like to be notified about the arrangements via email, please sign up as a member to Remy’s blog (in the upper right hand corner – it is very simple).

Remy has been having distention in her bowels since she was born, in the beginning of her life she was tested for everything, from NEC (ecrotizing Enterocolitis) to Hirsphrung’s disease.  Nothing was found and her bowels were assumed just premature.  A rectal biopsy was done and nothing surgical was found. Then she got septic.  As you all know Remy has been sick for some time, and has progressively been getting better.  She has still been having lung and gut issues, along with seizures.  She is 40 weeks now and if she would have been a healthy baby, would have been home by now.

Last week Remy had a CT scan on her lungs and intestines to look for something we have been missing.  After the scan Dr. Ginsburg, a very well-respected pediatric surgeon saw calcifications around her intestines.  These were most likely caused by a perforation in her intestine which eventually healed itself.  Ginsburg decided to do an exploratory surgery to check for a narrowing in the intestine where the perforation healed.  She was also throwing up and releasing a ton of dark green bile through a repogle tube that goes from her stomach up through her mouth, a clear sign of intestinal problems.  These issues could be what is causing Remy to be so backed up and swollen.  So of course we agreed yes, let’s do exploratory surgery to see what we can do.

Over the weekend Remy remained stable, awaiting Monday’s surgery.  We were worried she would get worse and either have to have emergency surgery or not be stable enough to have it on Monday.  I had to work and it was very difficult being away.  I was able to stop in for a very short time during the surgery,  but  my mom and sister came to the hospital to be with Mary.  The good news is Remy did great.  She is incredible and awesome and every great word you can imagine.  Remy did in fact have a lot of dead intestinal tissue.  Dr.  Ginsberg removed 40 cm out of 120 cm of her small intestine.  Which leaves her a considerable amount to live with.  He explained to Mary that it could either have been NEC or a Volvulous, both in which the end result is dead tissue.  We will never know the cause, or which one it was, but she definitely had one of them.

The healing process has begun.  She had a tough first night.  She struggled urinating, keeping her blood pressures up and is back on a high frequency ventilator at very high settings.  She is swollen again, they are pumping her full of fluids again to make sure she doesn’t dehydrate. The second night was a little better.  She is more swollen today and cannot open her eyes but this is expected.   This is going to be a long, slow process.  She will get better, she has to, but we have been warned she can get worse again in the process.  She is in the beginning of a long healing process.  She will be sick for a while, but when she does begin to get better we can hopefully get her lungs better, extubate and begin to feed her.  We still don’t know what the long-term effects of all of this will be, but we will stay strong and take it day by day.

In a few days she will have a bag colostomy bag attached to her.  This will catch her poop while her intestines heal.   She will have this bag for at least 6 weeks and maybe longer.    One of the major concerns is that her Illocecal Valve, which is the valve that connects her small and large intestines, is very fragile.  She needs this to heal or it could cause problems in both the short and long-term and would affect diet and bowel movements. Her lung is still a big concern as well.   She has a cyst,  rather a large pocket of air, that we hope will go away but instead has grown.   Another concern is that she has required steroids to help her through all of her challenges.  The steroids can interfere with her healing process.  Weaning them down is necessary, but also a test of how well she can do without the steroids.  She is back up on her Dopamine.  She is on antibiotics, Zosen and Vancomysin.  The seizures have been kept under control with heavy doses of Phenobarbitol and that will continue until she is in a stable enough state to be able to focus on that.  This will be a while from now.  She is very critical again, but stable.

In many ways Remy is back at square one.   She is worse off than she was from the day she was born.  In other ways she has progressed and we are astounded by her great resilience.  Her surgery was a success!!!  We hope that this discovery and correction in her intestines will help improve  her overall health rather than diminish it.  We still have a very long road ahead.  While its easier said than done we do our best to take it day by day.  We are so thankful and lucky to have the staff  that we do.  We thank you so much for loving Remy and for helping her get better. It truly means the world to us.

What a few weeks it has been!   We have as usual experienced our fair share of ups and downs.  Still the greatest news we could have hoped for is that the MRI which took place last Tuesday showed no signs of brain damage.   As a far as neurology can see the brain looks to be completely functional and in good health.  Our doctors, nurses, residents and so on were very surprised to see this.   With all the trauma that Remy has experienced, the chances that the MRI would show something horrible were very likely.  After hearing the news Mary and I were filled with emotion throughout the day not knowing what was coming at any given moment, tears, laughter, deep breaths and so on.  There were some significant blood clots discovered in the sinus cavity, which is a vein between the brain and the skull.   While these clots can be of extreme risk to Remy’s health,  recent ultrasounds have suggested that they are decreasing and dissipating on their own.  Metabolic blood samples have also been sent in for further review to make sure that there is nothing missed concerning the clots.

Following the MRI for the next couple of days Remy was doing very well.  Every day since she has opened her eyes at times throughout the day.   Looking into her eyes,  I describe it like being a six-year-old in Disney World.  No matter how many times I look at her I am always in awe and so in love!   It is ridiculous how amazing it feels to lock eyes with our little girl.  It literally sends chill down our spines.

On the other edge of the sword there are certainly concerns.   Doctors cannot assure us that her brain is and has not been affected from all that Remy has experienced.   It is possible that the growth of her brain has not developed as quickly as it should be is still a great concern.   This is something we may not notice until years from now.  There are still many unanswered questions we approach each and every day.

Remy has continued her terrible habits.   Seizures!  Mary and I have grown a great fear and hatred for the ‘seizure’.  While we have had some great moments over the past week our baby has gone through some long days and nights of severe seizure activity.  They have been frequent and extremely concerning!  We never know when they are coming.  We never know how long they will last.  We never know how severe they are.  Any neonatal experiencing such frequent seizures is exposed to great risks.   Those risks can be life threatening or can result in mental retardation, cerebral palsy,  long-term epilepsy and more.   Not only are we so concerned about the long-term  and short-term effects, but it is evident that each time Remy experiences these horrible seizes she is set back greatly.   Her progress halts.  In fact she goes backwards.   We have noticed the correlation in everything she does.   Her edema usually increases quickly,  which is something that takes a long time to reverse the effect.   She appears less active.   Her overall health without going into detail, takes several steps backward.  Think of it this way.  A storm hits your area, forget the severity for a moment.   Consider trees are down, structures are damaged pipes are broken.  Consider that this all happened in a short time over say an hour.  Now think of how long it takes to repair clean up and bring back to a the state everything was before the storm.   The damage happens quickly.  The rebuilding takes time.

In a nutshell here’s what is going on and needs to happen right now.  Remy has seizures so we need to keep close tabs on her Phenobarbitol dosage which control her therapuetic levels.  If it stays between 45 and 60, we feel comfortable that she won’t have any breakthrough seizures.  She HAS to lose fluid.  Not only is she swollen on the outside, but on the inside too.  She needs to get back to a normal size in order for her intestines to be a normal size to have hope that they will begin to work correctly.  We still need to rule out that she doesn’t have a malrotation in her intestine, but it looks unlikely.  The longer she stays on TPN, the more likely her liver is to fail.  Currently her blood gases show that her liver functions are great, so we are not too worried yet, but things happen fast here in the NICU.  She HAS to get her lungs inflated (there’s collapse in both of them) in order for her to come off the ventilator.  She is on very low settings on it, but she cannot come off of it until her lungs are ready.  This can also be helped with fluid loss.  We don’t know if there is a particular order this needs to happen in, but we need something to happen, and soon.

While the staff here is amazing, Mary and I do not have a an open communication line with neurology like we do with the rest of the staff.   They are not part of the NICU.   They interact with us like every department does,  hemotology,  infectious diseases,  G.I., and so on.   Respiratory is here all of the time  They check on Remy throughout the day everyday, adjusting her settings speaking with us explaining to us what they are doing and what they expect the pros and the cons.   We don’t get that from neurology.   I could understand this if there were some decisive answers about why Remy is having seizures.   How are they affecting her?  What will the long and short-term effects be?   If you know Mary and I,  or even if you don’t and you just follow our story, you know that we are very easy-going.  We are positive and fair even with this tough situation. Don’t get me wrong, we speak up when needed.   At this moment though we do not understand why neurology who seems to know so little about why and what our girl is experiencing has so little contact with her and so little to offer us in explanation.   Really, there are zero conclusions or theories as to what why she is going through this and this is no longer acceptable.   In the background Mary and I are getting more aggressive and trying to change this.   We DO VERY MUCH respect that there are great limitations on what neurology has been able to do because of Remy’s health and condition.   We also realize often it is not the number one priority, because Remy has had so many issues.   The bottom line is that now we need some sort of answers, and we will push and shove and rock the boat if we must,  rather than living in regret down the road knowing we may have been able to influence and outcome that could have been avoided by our advocacy.  It really boggles my mind that neurology is not way more active around Remy.  I don’t care that her condition is extremely rare.  This is my baby and I don’t care who I may offend.

Since my last couple of posts Remy has taken some of Mary’s breast milk.   That is a plus!  The downside is that she was only able to tolerate it for 30 hours before her stomach started distending.   The amount that she was able to handle was minuscule, only 15 cc’s.  She is now very distended again  and has gained significant weight and the consensus is that she is not ready for feeding again just yet, as it could disturb her and make things worse.   She is now 11 weeks old and she is unable to feed.   This is something that is definitely affecting her growth.   She will probably have to start on a formula that is created for neonates that have issues similar to Remy which are very sensitive to any type of milk of formula.  We just hope that she will be able to tolerate any type of feedings and soon.

She is experiencing problems with her  intestines again.  She is releasing large amounts of bile through her replogle tube.   There is great concern that she has issues with bowel movements.   This in turn affects her kidneys and stomach as well.  There is so much connected.  At the moment feeding is not even an option.  How long will it take.  How much damage is being done not feeding.  How much more will occur.  This concern grows everyday.

On top of everything.  Our refrigerator/freezer died  recently.  We lost about 50 bags worth of breast milk that Mary has so diligently been pumping and storing.  It was such a horrible feeling especially for Mary.   To boot the first delivery of our new fridge was refused due to our small hallway space  Eventually my brother-in-law James, a part-time mover and two of his guys came and helped us get the new one in.  My Dad made it easy and did all the work to get the new one for us.  These little things go such a long way, I cant even begin to explain what a headache this would have been without them right now.  We love you both!

We have cherished some the moments we have had with our little girl over the past few weeks.   I was able to hold her for almost two hours after waiting more than 40 days.  Mary kangarooed with her for over seven hours straight.   Mary has been by her side all day everyday since she herself was released from the hospital. I am SO SO PROUD OF HER!   I lately have missed many days due to long work hours and while I am very grateful to be working and realize it is what I must do, it still leaves a great void in my heart.  She opens her eyes and like I said it is heaven on earth to see.   We are grateful for what we have.   Yet we are still watching babies come in and out every week.  We watch so many others get to do things with their children that we cannot.  We are not mad at them.  We are jealous.  There is no way that Remy will be leaving anytime soon.   We have accepted that fact for now.  But mentally what you must do to accept that fact is the hard part.  Our little Remy still has many serious issues to be resolved.  She is nowhere near out of the woods.   Day to-day there is still no feeling of normalcy or expectation.  Her condition changes quickly and frequently.   She is very sensitive and yet very strong.  She and her body are trying to tell us a and the staff at the NICU what needs to be done but we have still yet to figure it out.  She remains as she did in the beginning a puzzle.

To all of you following and  anxiously to hear about Remy’s condition and what is happening Mary and I are grateful for all of the love, compassion, and generosity we have seen from people everywhere.  While this blog is a great hep to me to Mary and to Remy in so many ways, at times it is just so difficult to update.  Mary and I  do think about all of you often and we never take for granted how lucky we are to be surrounded and protected by your love and we thank you for it from the bottom of our hearts.

Here are some great pictures taken in the past week and a half .