Remy Elena Zappulla February 23rd, 2011 – May 29th, 2011

I may have said in the past something to the extent of, “This is the most difficult post I have had to write.”  Nothing compares to what I am currently trying to express.  As I dreamed of so many times, I will never be able to use this blog as a chronicle to explain to Remy how she began, in a time her life that is fit. That opportunity was stolen from me.

Yesterday, Sunday, May 29th, 2011 at 8:30am, the soul of Remy Elena Zappulla born February 23rd, 2011, left this earth.   She was in our arms, with no machines or IV’s running though her veins.  She is the love of our lives, the greatest gift we have ever known. She left in peace and just before her heart stopped beating she grabbed our fingers and squeezed them very hard.  Even in her weakest moment our Remy showed great strength and courage.  She told us she loved us.

Waterfalls are rolling down my eyes as I write this. Our last day and a half has been excruciating and indescribable.   There is an emptiness that Mary and I know wholeheartedly will never be filled during our time on this earth.  Our resentment and anger, even towards God, for the loss of our precious sweetheart Remy cannot be put into words.  Our sadness is often expressed in crying sounds that do not sound human. Sometimes we cry so hard that we do not make any sounds at all.  Our feeling of loss is greater than any feeling we have ever felt.  A part of us, along with Remy, has died as well.  It’s not metaphorical,  it’s real.  We built her a beautiful room, have her a wardrobe, and a lot of gifts with monogramming.  We have so many reminders of the life we wanted with her and it is painful, so very painful, to be without her.  At night, in bed it is excruciating!  Mary and I clench onto one another trying to provide any inkling of comfort we can give to one another.

After not leaving the hospital for 5 straight days, hoping for a miracle, but knowing this awful moment might come and did, today’s morning experience was as horrific and as real as it gets.  Today…………….this morning, as we woke, we did not get up quickly, we did not rush to get our things to go to the hospital, and we were not filled with excitement to get there and kiss Remy’s face all day.  It was the brutal empty feeling of loss.  The worst kind of loss in its most extreme form.  Going to the hospital everyday for the entire year would have been a joy compared to what we felt this morning.

We do not expect these feelings to ever disappear. There will be an empty space forever.   We do not know what we are feeling at times because it is so new.  Yet we treasure our 95 days with Remy more than any gift we have ever experienced in our lifetime.  Our unconditional love for Remy will ALWAYS remain!  Remy has brought us as  husband and wife, closer than ever before.  In the last 95 days, she has taught us more about our own lives than we have learned in our 30 and 38 years.   She will live on forever and we will not forget her.   She has affected so many people we know, and many others we have never met.  She has taught, touched, and heightened the lives of not only Mary and I, but thousands of others.  Remy is a legacy.  We hope that anyone who reads this post, follows our story, or has connected with Remy, has gained something from her.

If you see Mary or me right now you may not have the same feeling.  We are broken, and at times cannot express optimism and strength. This morning we woke up with feeling of wanting to be dead. With time, we know we will be strong again.  Our Remy was SO STRONG!  Her heart was physically and metaphorically the strongest heart anyone could ever have.   We will never forget that.  We will carry on her legacy and bring good from it.  She is our hero, our superstar. Remy is our LOVE and she will always live on.

A service will be held in Remy’s honor later this week in Brooklyn. All are welcome. Details will be provided in my next post.  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).

We remain grateful to everyone who has supported us with prayer, love, donations, words, and thoughts and so on.  Your actions mean the world to us and we love all of you.

Please take some time to enjoy the beautiful pictures of our precious Remy below.

Fighting for Dear Life!

I know that many of you have been anxious to hear of Remy’s results since Sundays post.  This has been a difficult week for me to be able to update.  Between more long work days and spending days and nights at the hospital in between and the stress of Remy’s worsening condition it has been very difficult to even think about blogging, let alone do it.   Remy has faced so much throughout her three months already.  The  past 10 days have been challenging and treacherous for her.   She has and has had multiple organ failure.   Her dysfunctional kidneys have not allowed her to pee.   Her blood vessels still are unable to retain fluids.   She has grown immensely and is filled with so much fluid that it has caused bruising and discoloration of her skin throughout her body.  Her lungs were severely compromised.  Her heart has been affected.   She looks plagued and physically beaten.   Blood clots all over her skin, (which has little room to expand any more) legions all over her.  Her face is so swollen it appears as if she has three eyes. Metabolically and  physically sicker than she has ever been before.  Some doctors here have never seen a baby as puzzling and sick as Remy is. They have also never seen a baby as sick show such fight!

We have lived each day not knowing if she would be with us the following day.  To go through that is beyond explanation.   We have been tested, broken, destroyed, dehumanized, filled with rage and anguish.  We have been counseled and cared for by so many here at the NICU.   We spend as much time as humanly possible talking, touching, kissing and singing to our little miracle child!  Our brilliant, mind-blowing staff here has shared our ups and downs and continues to challenge themselves.  We have held several meetings each day.  We work with them by the hour trying to hear Remy speak to us, and figure out what she needs.  While we are no scientist or medical authorities of any sort, we have learned so much about our baby’s needs and responses.

Emergency surgery this afternoon, which very likely could have ended her life, has given us a small glimmer of hope.   She is too sick to move, so it had to be at her bedside.  It has helped her breath better, and alleviated a stressed lung and her heart.   Our Remy is by medical standards still extremely critical and the odds are very much against her ever coming home with us.  We understand what we and Remy are facing each and every day we are here.  For now though we continue to focus on trying to save her.   She is miraculous.  She is miraculous!  She is miraculous!

We are grateful to all of our family; blood relatives,  NICU staff,  friends and followers, donating blood,  bringing us food,  sending us love and praying for us, whatever it is you have done!   I cannot promise that I will have another update anytime soon as it is growing more difficult to post.  What I can promise is that Mary and I, along with her great medical staff will be here every day by Remy’s side, working hard and fighting, doing everything within our power to make Remys life story last longer than ours!

Beyond Words

Without question of any post I have previously written, this one carries more emotion than ever before. I will usually sit on my laptop and try to convey some experience, some diagnoses, some surrounding and mix it all together. I want you as friends, family, and followers to understand what we are experiencing. What Remy’s status is. I try to paint a picture of what it is like in here and what it is like when I am not here.  I want you to connect. I want this to be a chronicle that I can go back and show to Remy when she is older, something to reflect in a time in her life when it seems fit. I want this to be a resource for those who may be going through similar situations and need to relate. I often go in ready to write about one thing and end up writing something different and if you read the blog you know my posts can become very long.  I don’t think I possess the ability to convey exactly what Mary and I went through this past Thursday. It was the most frightening moment in my 38 years. On Thursday, both Mary and stood by as we watched our little Remy almost leave us!

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The space above represents emptiness.  That was the strongest feeling that was felt.  It began with an attempt to transfer Remy from her oscillator to a gentler machine known as the ‘Jet’. It started with just three personnel and ended with a huddle of about 15 to 20.  The tone was one of the utmost concern, panic and fear! There was screaming, crying, falling to the floor, panic!  Our Remy was seconds away from never breathing another breath again. Everything around us became blurry. We honed in on the possibility  of our child struggling to survive and it was as if we had entered into another dimension.  Our hearts stopped. We could feel our bodily functions like we never have before. We were helpless. I mean HELPLESS! It is was our absolute WORST nightmare coming to fruition in front of our very eyes, except we were awake, the kind of awake you never want to be!

During this moment we  truly realized as much as we thought  we knew what love is, as much we thought we could describe love, we never even had a clue how strong our love was until that love was being TAKEN AWAY FROM US!  Remy…………..our girl, our little lady, our bugaboo, our sunshine, our LIFE within us, WAS NOT READY FOR THIS.

Following this event we were told by many doctors and personnel at the NICU that we should enjoy every moment we have with her, that we should be prepared for the worst, that there are so many horrific possibilities in our’s and Remy’s future, both long and short-term.  We have heard similar things from the staff before.  This was different.   The tone was blunt and so serious.   The expectations are so questionable. It is now Sunday morning and Remy still has major leaps she must make and the situation is still very critical and more real than ever.

Remy’s response in the 12 hours following this heart-wrenching, and aging event was nothing less than miraculous! She made overnight progress that was simply astounding! This is not just from a parent’s perspective, but from those on the staff caring for her day and night. For the next 60 or so hours up to now she has been very non responsive, except for random movement and hand holding, which melts our hearts.   She is currently in a holding pattern, but also gradually heading in the wrong direction. There is immense concern for her in so many areas of her health.  In this post I don’t  have the energy to explain all of the medications, attempts to help her gain strength, and symptoms she is dealing with.

Our baby girl has shown unthinkable strength.  She is not ready to give up on us and herself. She has a great amount of healing to do to recover from her recent surgery while also having to recover from preexisting conditions and battle the unpredictable day to-day hurdles she faces. It do not have the option,  but I would endure a lifetime of torture and solidarity to see my baby get healthy and live a long happy life!  Our spirits have been tested more than ever before over the past four days.  While our baby’s health is the biggest concern of all our psychological status is unpredictable.   We know that we are parents.  We know that we must continue as any other parent and maintain our strength and dig as deep as humanly possible.  We advocate when we see fit and try to influence as we see fit and let the experts do what they must and continue to talk and touch our little angel everyday.

Day by day, hour by hour, minute by minute!

The picture below represents strength that starts from the roots.  Our Remy has strong roots that date back to her ancestors.   We want to see her flourish and grow into her own wonderful ‘self’!

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Waiting

Remy has not made any progress in the past two days.  There were some positives but no real progress.  She did produce about 37 cc’s of pee after 42 hours of nothing.  Picture a standard spice container you would get a supermarket, now hold you thumb and your index finger about an inch apart.   That is about how much she filled that container. It’s not a lot.  It was nice to see it at first, and enough to make us smile and feel excited.  But since yesterday there has been close to nothing again.

She is swollen today, very swollen.   Her hands and feet are more bloated than we have ever seen.  She has had to undergo several procedures.   Her chest tubes were moved a few times between yesterday and today.   After what the x-rays revealed, it was necessary.  These tubes move a lot, mainly because the air and fluid surrounding her lungs move.  If you tape a string on a windowsill it will just sit there.  If you open the window, the string is will blow around and sit in different positions, when the wind dies down.   Remy’s lungs are constantly changing condition.  One day the upper right lung will be collapsed, the next it will be the lower right.   Her left lung experiences hyperinflation, because it already functions okay but the oxygen she receives overcompensates.   She experiences acidosis when she does not get out as much carbon dioxide as she is producing.  This affects her acidity levels and is directly related to her kidneys, which are already functioning poorly.  She also gets Pneumothorax, which is when there is air outside of her lungs that needs to be inside of her lungs.  We desperately want to know that the air is inside her lungs, where it should be.  On top of all of this, every time she goes through a procedure of any sort her MAP’s (blood pressure levels) drop down immediately.  Following that, they can take all day to get back up to a desirable rate.

When her MAP’s reach the desirable rate of 39 and above that is when she usually pees.  Problem is, she requires so many procedures and disruptions, that it is a rare occasion her MAP’s can be kept at a steady rate that is pee conducive for her.  It’s like trying to drive a car when one tire is heading east, another west, another south, and another north.

One really great thing is that a cardio surgeon yesterday was able to insert two lines into Remy’s right and left Femoral arteries.  These are the arteries in her right and left groin area.  She is so swollen, so it was a big concern that he would even find them.   He aced it!  What he inserted was an A-Line (arterial line) and another I.V. line.  The A-line is great, because it serves two purposes.  It is used to constantly and accurately read her blood pressure (better than a standard cuff), while more importantly it can be used to drain blood straight from that line.  That means she does not have to get pricked with a needle throughout the day and go through that discomfort and stress. I estimated how many times her blood has been drawn in the last 44 days, based on an average of what I have witnessed.  My guess is about 500.  I take no joy in saying this, but I’m pretty sure I’m close.  The other line allowed us to remove an IV line from her wrist, which was there for quite a while, and was starting to show signs of distress.  We would love to be able to remove her picc line and try a new artery in her leg or somewhere else.   The picc line itself could be the source of infection.  It’s a long shot, yet a possibility.   This is too risky though. She is too swollen and trying to find somewhere to move it to is not practical right now.

Remy has been for the most part, immobile for the past two days.   No movement, no hand grips on Mommy and Daddy’s finger, no toes curls, and no tongue movement when we clean her lips.   It’s concerning and disheartening to witness!   We want a reaction from Remy.   It’s her M.O.  Yesterday, just prior to tapping in to her Femoral arteries I was holding her head and she experienced some heavy twitching.  This was not the movement I was hoping for.  They were most likely more seizures.  She had to be administered a heavy dose of Phenobarb, which also carries a barbiturate.   She had to be administered Vecuronium, a paralyzing agent, and prior to the procedure to ensure she wouldn’t move.   The after affects of the Vec and the continued Pehnobarb injections I’m sure are affecting her mobility even more.  Regardless, we are so anxious to get some sort of movement from her.  Anything!

Today she went trough some more stress.   Both of her chest tubes were removed, and a new one was put in to get some of the air out of her lung cavity, which was a positive thing.  However, it was still more stress on her.  She had to be extubated and re-intubated with a wider tube to help her saturation levels.  It was stressful to watch.

She is finally at rest now with no foreseen activity coming up for at least a few hours and hopefully through the night.   Her blood gases are good.  She received a blood transfusion today.  Her latest respiratory x-ray looked good.  We are hoping for her MAP’s to increase to about 40 or above and stay there.  From there we hope for lots of pee!

On another note we want to mention how even though these times are incredibly trying, we find comfort and kindness in the friends we have made here in the NICU so far.  It is amazing how close you can get to people so quickly, and how a trying situation can bring people together.  We saw our newfound friends Courtney and Avi leave the NICU yesterday with their little girl Charley, after 5 long months of watching their child go through hell and get better.   We miss them already and Mary will especially miss going to see their little girl.  Whenever Remy is having a trying time, Mary found so much comfort in going to see her.  Knowing she is home makes us know that someday we will get to go home too.  We deserve it and so does Remy.   The picture of the empty space at the top of this post is both a hope for us and a tribute to Charley.

Uncertainty

Remy has had her ups and downs since my last post.   Her blood gases have been very good.  Her SAT’s (oxygen levels) were high, which is positive.  Her MAP’s (blood pressure) have been up, another positive. Her heart rate has been normal for a preemie, in the 160’s.  Additionally, she has been peeing like crazy!  Because of her good vitals, the doctors have been weaning Remy off of her meds.  Because of this, and the peeing, her swelling went down a little bit.  Lastly, her oscillator today was down to 45% down from 100%.  A giant sigh of relief. She was still in very critical condition, but progress is what we want each day and Remy we were getting it!

On Monday afternoon these trends continued for most of the day.  With that said, Remy had to get her chest tube either moved or replaced 4 times throughout the day. Mary was getting frustrated that this was done so often, and so was our amazing nurse, Claudia, who has been our day nurse for the past few weeks.  Aside from the great trust and respect we have for all the staff here; there is so much to be said for the nurses.  Besides  Mary and I, they spend more time with Remy than any one else.  Mary and I are completely at ease with Claudia.   She is a tough love kind of woman,  no bullshit, and very committed. Everyone has his or her own approach, and Claudia is not afraid to put anyone in line, including us.  She also has a soft side that we’ve gotten to know pretty well by being around her so much. Most importantly, she takes care of our girl like an injured soldier in battle.  Another example of the NYC-NICU “great humanity” that is well worth sharing.

Back to our Remy, she needed to get rid of the air and fluids that have been collapsing her lungs.  It’s not to say that the doctors were doing anything wrong, but just a matter of enough is enough!  Our little girl was going through too much to begin with, so it had to be right this time.  During the fourth chest tube-changing procedure the doctor wore a lead coat. They did an x-ray to make sure the tube was in the most optimal spot.  Normally the doctors will insert the chest tube, stitch her, bandage her, do an x-ray, decide if it’s in the right place, and adjust as needed.  To save Remy distress this time, the x-ray was done prior to the cleanup and adjustments. She really is tough.

Remy has been on breathing assistance for quite some time now, and being on high frequency machines is not good for her long-term health.  Since she has one damaged lung and one hyper-inflated lung, the more time she spends on the oscillator, the more likely the good lung is to collapse.  In a perfect world, Remy will gradually step down from one machine to the next, each time on lower settings, until she is breathing on her own (which will take a lot of time.)  Shortly after the fourth surgery of the day they attempted to wean her from the oscillator to the jet (another high frequency machine.)  It did not work out as the doctors anticipated.  She kept trying to breathe over the machine, which in some instances is promising, but this was a bad sign.  She did not tolerate it.  She experienced something called respiratory acidosis.  At this point all her vitals went in the wrong direction.  Everything Remy had done to get to this transition point went downhill.  She was put back on the oscillator, but on higher settings this time and had to work all night and into the morning to get back to where she was before the transition.  Our girl just went through in a day what so many don’t even experience in a lifetime.  This was so tough for Mary to see, and so difficult for me to be away from.

Mary and I understand that things like this have to happen in order for her to progress.  We can’t just leave her on a breathing machine forever, scared to transition her in case she doesn’t tolerate it.  God knows this is the last thing we want.  I just wish she could have one freaking bit of good luck.  It seems like she is getting the short end of the stick in every situation.  I just want my little girl to make progress.  I’m not asking for it to be fast, but I am asking for it.  Mary and I are still very optimistic and still very amazed by our little trooper’s great strength!  What is most important to us is that Remy gets healthy, quickly.

She remains a puzzle in many respects, and has to be handled with caution.  It is important that we be there to guide, listen, answer questions, and let our little girl know that we are and always will be there for her.  We are her advocates and we must speak our mind.  We continue to be thankful for the great staff, get angry when appropriate, and ask tons of questions.  We educate ourselves as much as possible. We befriend and earn our staff’s trust and make sure they do the same with us.  As a family we do our best to be there for each other, and try to comfort and tame one another when we clash, or feel different emotions.   It is a test in so many ways that all comes down to one thing………..Remy.

Tuesday afternoon was Mary’s birthday.  It was different from any other birthday she ever experienced. The best part was that she felt the love from everywhere. Unfortunately, I could not spend the day with her.   Wednesday was the first day I was able to see Remy since Sunday, and it has been extremely trying!  After a full demo of the room in our house that used to be known as the “ice-box,” I discovered I am no match for dust.  We are having it insulated, as it will be Remy’s room. The lack of sleep, stress, and dust caught me off guard and knocked me out.  I’m not sure what I caught, but it got me sick.  When you catch a cold and your baby is in the NICU you just don’t go in.  I quarantined myself from the house and wore a facemask for the past three days.  I washed everything in the bedroom and cleaned the sheets and blankets with gloves on! I kept my distance from Mary, sleeping on the couch and staying at our close friends Rudy and Lynda’s place.  I kept to the ‘no contact’ rule with Mary and drank tea like a maniac.  Fortunately, I was able to get antibiotics just to be extra safe and I’m feeling much better.   Knowing I could not come in, I stopped in for a quick haircut and my Russian barber Sergio, who offered me his usual shot of vodka, which I declined, gave me free hair gel and some shampoo and conditioner for Mary for her birthday.

Getting up to speed, Remy can’t pee…again.  The doctors say that her kidney functions do not look different from yesterday, when she was peeing, so we don’t know why it suddenly stopped.  The mission is to get Remy to pee again.  She is now receiving more fluids without potassium and she is likely become super swollen again. This is in effort for her blood vessels to take in the fluid and for her kidneys to function properly again.

At 4:00 pm Wednesday, Remy was being weaned off of the oscillator and the nitrous oxide machines.  She started at 100% oxygen and 20 ppm (parts per million) of Nitrous and then was 45 % oxygen and was down to 15ppm of Nitrous.

At 7:00 pm Wednesday, she changed for the worse.  She is back up and her Dopamine levels are at maximum levels. It’s just a small example of what Remy is going through.  It changes so quickly. When quick changes happen, it is usually for the worse.  Progression happens over time. It takes hard work and effort to move forward and build something, but it’s easy to have sudden setbacks.  The difference here is the dire consequence in Remy’s case. The staff is working hard to get her down to 21% oxygen (what we breathe in room air) and down to 0ppm of Nitrous, decreasing by 5 every day until we get to 5, then decreasing by 1, for a total of 8 more days…God willing.  Should this happen, and when it happens because it just has to, it has to, she will continue to stay intubated at 21% oxygen, and this would be a great thing. Higher levels of oxygen are not good for anyone, especially babies.  For now though we are not making the progress we desperately need.

There is a common expression most everyone has heard, “Nothing in life can prepare you for something like this.”  I can understand that perspective, and I have great respect for it.  However, I take the opposite stance.   I say “everything in life has prepared me for this!”   Nothing matters more right now.  When I look in my daughter’s eyes, when I close my eyes and think about her, and when I look at my wife.  When I realize that even though Mary and I are not anywhere near qualified to treat our baby as these miracle workers do, any inkling of influence that we have, small or large, is meaningful.   Our experiences from the past now serve as lessons for life now.  I’m not saying this is easy by any means, nor do I know what is coming day-to-day.  I’m just saying that while I know I’m not Superman and have little influence over Remy’s outcome, life has prepared me in every way to dig deeper and do my best for my daughter, my wife, and myself.  I don’t know what today will bring.  I know that yesterday was the hardest day we have faced. Ever.

Friends, family, followers, those of you that have stumbled upon my blog and support us, if you sense a feeling of ups and downs in this post, that is exactly what we are feeling.   Today has easily been the hardest day we have faced.  Remy is very sick. Contrary to great strides over the past eight days, she keeps going backwards a few steps.  Many of the consequences can be dire.  We are at a scary point right now. The doctors and nurses have made it no secret how serious this is.  Our Remy is in danger of serious underlying consequence.  I ask that you continue your prayers and positive energy. We continue to feel your love everyday and we promise to transfer it to our baby Remy!

Life Support



Remy’s progress halted since my last post.   Almost immediately after I posted very early Wednesday morning, on my way to work, she went downhill.  Her MAP’s (average blood pressure at rest) dropped.   Her SAT’s (saturation levels, better known the oxygen in your blood) dropped.  Her heart rate went up.  It’s like she has this thing against Daddy going to work.   Remy went into septic shock and had to have a chest tube put in to suction out the fluid taking over the chest cavity around her lung area.  What did this mean?  How sick was she?  It was all very confusing and overwhelming.  We’d just have to wait and see, watch her suffer and hope she gets better.

Thursday was not what we hoped for!  Mary arrived to the NICU to see Remy’s area screened off, while the attending neonatal doctor performing yet another adjustment of Remy’s chest tube.  It was definitely doing its job, but had to be moved around constantly, which was not good for Remy.  Mary texted me a few times throughout the day.  I got caught up during breaks and lunch.  The news was pretty frightening, even though she sugar-coated it for me, as not to scare me.  Remy had contracted pneumonia.  Her right lung collapsed and her kidneys were still not functioning properly (renal failure).  The doctors and nurses at the NICU spent all day working on Remy, checking on her, fixing the chest tube.  Placing a chest tube in the right place in a three-pound baby is not easy.   It takes a lot of adjusting.  After two long days working in the field, I got to the NICU as soon as I could  to be with my girls.  When I got there I could see in Mary’s face that she was very distressed and had not slept in a while.  She was not well, physically or mentally.  We slept on and off by Remy’s side all night, hoping for her to just stay stable.

Friday, mid-afternoon, once again we were waiting for her to pee, as patiently as we could.  It’s a hard thing to get a baby to pee under these circumstances.  She’s on heavy doses of Dopamine to raise her blood pressure, which makes it much more difficult for her to pee.  To counteract she has been getting doses of Lasix and Bumex to get her to pee.  It’s a snowball effect.  You just have to wait and celebrate at the first sign of yellow liquid.  I headed home for a couple of hours after a rare sit down lunch with Mary to shower and take care of a few things.  I squeezed in a 45-minute power nap at home.

This was a rough day!   You think you have put the roughest days behind you and hope for the best, but that is not the case for us right now.  Her condition is not easy to absorb. Remy did show some improvements throughout the day, concerning her right lung.  Her lung was fully collapsed on Thursday and early morning x-rays showed her lung about two-thirds expanded.  That was a major improvement!   Still, there was a lot of air outside of the lung, and there is fluid infected with bacteria around her lungs.  Those are both are very dangerous things.   The main focus to get Remy better was based on three factors  (there are several more, but these took priority); (1) keep her MAP’s up, (2) get the lung to inflate by releasing the fluids causing it to collapse, and (3) for heaven’s sake make our baby pee!

Later yesterday evening our baby showed big signs of improvement.  Her MAP’s reached a new record high of ‘58’ in her 37th day of life.   To put in it perspective, the target rate was 35.   She was beginning to pee after a catheter was inserted once again.   Her saturation levels were reaching somewhere around 95%.  They don’t get any better than 100%, so this is a good thing.   She was stabilizing!  We had something to be happy about at the end of the day.  Mary and I went home to try and get some sleep after getting the good news.

Today has not been easy.  She has gripped our fingers a bit and showed signs of strength, but she is not in great shape at all.  She is swollen everywhere!  Her eyes lids are so swollen and look deformed.  She looks as if she was beaten up in a gang fight.  Her skin is full of bruises, cuts, scrapes, blisters, needle marks, you name it, and she has it.  Our little lady is being kept alive by a high frequency oscillator, which breathes for her.  Instead of helping her like a SIPAP or a CPAP, it keeps the lungs constantly open and takes over 300 breaths a minute.   She is getting a ton of fluids through multiple I.V.’s and receiving all of her antibiotics and nutrition through her picc-line.  She is still getting the maximum doses of Dopamine for her blood pressure and high doses of Lasix to help her pee.  Her antibiotics have changed.  She is still on Vancomysin, but off the Zosen and Cetaphax and now on Maxipime and Clyndamysin.    And this list doesn’t even begin to tell you all of the things she has been on this week.

Early this morning, the tube in her lungs needed to be adjusted for the seventh time in two days and she about to get an additional tube.  She is so filled with fluids and her skin is so sensitive that everyone has to be extra, extra careful when she is touched.  She was just administered steroids and FFP (Fresh Frozen Plasma).  The current focus is to try and get her fluids out, get her blood pressure up and get her blood vessels to start absorbing the fluids.   I mean really, there are multiple efforts and objectives, and it’s hard to explain without going through it, but it’s impossible to cover everything equally.  The medications she requires, while helping, also interfere with and slow down other necessary functions.   It is a constant challenge trying to figure out what is best for our little lady, and there is no challenge greater than trying to preserve one’s life!  The approach can literally change every hour based on dosages, medications, care, positioning.

Remy is strong!  She has proved that, and if  she stay’s strong she will beat the pneumonia.  Her lung will re-inflate completely and her kidney function will return to normal.   That is what are hoping for and all we will continue to hope for until it happens.  I’m so mentally exhausted I can’t write anymore.  We love you all, and Remy appreciates your support, we know she will triumph, but we are starting to notice the soles of our boots wearing down with a long trail still to climb.

These pics may be tough look at.

Growing Stronger

It is Tuesday, I think………yes.  We are so tired and sleep deprived that the days are starting to run together.  Remy’s status has improved greatly since Friday.  Remy is definitely a Zappulla.  There is never a dull moment with our little lady.

We stayed at the hospital overnight on Friday into Saturday.  Remy was very sick throughout the day and we couldn’t leave her.  Remy had the whole NICU on a “red alert.”  Her incubator was flooded with nurses, residents, and random doctors throughout the day.   Mary and I were exhausted… physically, mentally and emotionally.  At this point, Remy wasn’t showing signs of improvement and we have never been so afraid.  Her blood pressure was very low and her entire body was incredibly swollen.

By Saturday evening she was starting to stabilize, but was still in critical condition. We went home for a bit after the nurses kept telling us to go get some rest and try not to worry.  “Try not to worry?” Ha! Easier said than done.  But I will say, that nothing makes us feel better than the nurses and doctors who take care of her. Throughout the night we called Lily, our night nurse, over and over and over.  At about 1 am Lily gave us the best news.  SHE PEED!  Remy had not urinated in about 24 hours and they feared renal (kidney) failure if she didn’t.  Urinating is crucial when your body is retaining fluids.   Not only was our daughter on life support, but knowing that if she gets any more potassium it can be crucial, so we have to cut out any medicine that has any potassium in it is incredibly scary.  Urinating was the only way that would improve.

Additionally, she pooped on her own, which she had not done in a while.  Mary cried so hard when we hung up the phone that she scared her mother to death!  Mom T was sleeping in the other room and was terrified until she learned it was great news!   Mary is on an emotional overload, so naturally the crying comes when news is good or bad.

Here is a more clinical version of what Remy has been going through. She is now 33 days old but she is still unable to tolerate food.  Her only source of nourishment is through TPN drips into an I.V.  She receives potassium, electrolytes, calcium, and amino acids and has been administered Pepcid for acid reflux.  She’s on Lasix which can reduce the swelling and fluid retention and treat high blood pressure, but mainly it is to treat her kidneys, which were in danger of failing.   She is currently breathing through an intubator and the nitric oxide machine, on continuous doses of Phenobarb, and Keppra to control the seizures.   She is on four antibiotics; Vancomycin, Zosyn, Cefotax. and  Fluconazole, an antifungal antibiotic.  She was taken off the Fluconazole today, the rest are on a 10-day cycle.  She was put on Dopamine has been slowly weaned down and Epinephrine, which she was thankfully taken off the on Sunday.

By Sunday, Remy was slowly but surely improving.  She was reacting well to all of the meds she was receiving. Currently, she is still unbelievably swollen!  Doctor Wachtel called her a little blueberry muffin! Her blood pressure was stabilizing, and her blood gas levels were the best they have been throughout the weekend.  Her heart rate lowered significantly, and the doctors had weaned her off some of the meds. She started peeing a ton, which is really important for her progress.

We were able to go home Sunday night a little more relieved and filled with hope.  On Friday before leaving, Dr. Wachtel grabbed Remy’s little hand and said, “Promise me you will see me on Monday!” and thank God she did!  There was no certainty. It was an emotional weekend, but to know she is getting better is the best feeling a parent can have.

Monday was more of the same trending. Remy was getting much better.  She was taken off of the Dopamine.  We were visited by multiple teams; Neurology, Infectious Diseases, Social Services, and Surgery.   Nurses, fellows, attending’s, and residents  alike were all genuinely happy to see Remy doing well.   She is like a little Rock Star!   While we are no more important than anyone else here and everyone has a tough experience in the NICU, it was evident how critical she was and our little fighter has managed to start her own fan club!   We’ll be much happier though, when she decides to play it cool and stay out of the limelight as nice as it is to have the support!  Other parent’s even check on her all the time.  They say at the NICU, the more your baby is ignored, the better she is doing.  We had a great day.  Remy was able to get one eye partially open and move around a bit.   At some point in the day our nurse, Claudia, said that we would know Remy is really doing better when she has more than one baby to take care of.

When we arrived at the hospital on Tuesday morning we saw Claudia, our nurse taking care of the baby next to Remy.  Relief!  The past few nights when she was really sick her night nurse, Lily, set up a mobile nurses station right next to Remy so she could watch her all night.  Currently, she doesn’t need to be watched 24/7.   They were even able to close the incubator cover (which has had to remain open since Friday for accessibility).  Her intubator was originally running at 100% and is now at 45%. She is currently getting 360 puffs of air per minute, opposed to 420 from the weekend.  Her nitric oxide was reduced.  Everything is heading in the right direction!