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!

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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!

Critical

I’m sitting in the NICU as I write this post. Mary is in the chair next to me taking a long overdue nap under my hoodie.   It’s been an extreme lack of sleep all week for both of us, especially the past two days.  It’s my first night back here since Monday evening.  My work schedule didn’t really allow me the time to get into the NICU.  The feeling of emptiness in my heart lingered with me all week, but I was grateful to be working, and at ease with crew I was with.

Tuesday morning started off as a tough one.  Our little buddy Jake, my cat of eleven years was not doing well the previous two days and it was noticeable.  He had been struggling with heart and liver disease for almost two years, but never really experienced any extreme pain.  My parents took him to the vet, while Mary was at the NICU, and I was working.  The news was short and sad.  Jake never made it back home.  He was in pain and had to be put down.  We knew this was coming eventually, but it was more sudden than we hoped for, and it hurt like hell, especially since we we weren’t with him in his final moments on earth.  I saw him for a couple of hours on Monday evening before my visit at the hospital and gave him some of my pork chops, one of his favorite dishes, and he fell asleep purring in bed with Mary later that night. I haven’t been home yet, but I can feel the void, knowing he is no longer with us.  I’m actually going to miss him trying to eat our dinner every night.

Meanwhile, Remy was not having the greatest day Tuesday.  Things remained a puzzle.  Mary arrived early to be there for her biopsy, but it was postponed until Wednesday. Remy was still struggling to get anything out and still unable to take any feeds.  Mary kangarooed with Remy and felt her experiencing heavy twitching once again.  The next day Remy had her biopsy, which went without a  hitch. We are awaiting the results.  Later that day she would be put back on EEG for the second time.  Unfortunately, it confirmed she was experiencing seizures.   Fortunately, they were not nearly as frequent this time.

With respect to so many details during the past three days, which I could write several posts about, I am skipping over them to get up to speed Remy’s current condition.  As of this morning Remy is in critical condition.  She has an infection, and is very sick. She is  intubated and being administered nitric oxide.  The intubator is giving her constant puffs of air through her lungs, 420 per minute to be exact.  The EEG is running and another machine is keeping oxygen in her lungs while releasing carbon dioxide from her lungs, at a rapid rate.  Her heart rate is extremely high, steadily between 200 -220 per minute.  Her blood pressure is extremely low (her maps are about 14 and we need them to reach at least 32, 33 before we can let out a sigh of relief). One of the biggest goals, right now is to get her blood pressure up.  Just to paint a small piece of the picture, when I was last here on Monday night, there were nine open outlets behind her incubator.  Not one is open at the moment.

Remy is on just about every and any antibiotic that she can possibly be on.  I do mean that literally.   She is getting blood drawn in order test her blood gases every two hours.  She has I.V.’s in all but one limb.  She has an A-line in her left arm, which just a few hours ago was in her right arm, and several drip lines entering the I.V.s in her feet.  She is being administered fluids such as Dopemine, Epinephrine, Phenobarb, Keppra, caffeine, sugar, fats, electrolytes and more.  She has leeds covering her head, two tubes down her throat.  One is breathing for her, and the other suctioning out bile.  She has a catheter, an oxygen monitor on her foot, four monitors on her chest and a pad covering her eyes from the light.

It is medical technology at its best and Mommy and Daddy’s worst nightmare all at once. It’s an experience that Remy is clearly uncomfortable going through. She looks as if she is in a coma, for the most part. She is not, thankfully! The small occasional grunts,  slight hand grips and toes curls on our finger show signs of strength.  Her white blood cell count is down and she is slightly nuetropenic.   Over the last few hours she is showing signs of improvement.  The NICU nurses and doctors are working very hard.  I cannot express enough how grateful we are for them! Lillian, a frequent nurse of Remy’s, has been with her for four nights straight and has been taking such good care of Remy, and us for that matter.  She is our superhero this week!

This is a tough day!  The toughest day we have faced yet. While willingly and gratefully going back to work, getting back here to be with my girls could not have come soon enough.  I did not expect it would be in this state.  We are with Remy and by her side.  We talk to her softly and tell her to keep fighting hard and keep getting pissed off when a needle pricks her.  We are scared, and upset for the pain out baby is experiencing.  Who knows how much we’ll sleep tonight but who cares.  We just hope she continues to improve through the evening.  This is not an easy experience by any means, but we know our baby will fight!

Rather than show pictures of what she looks like now, I wanted to post a cute video of her, please check out this video from last week of  sticking her tongue out and making us laugh.

Looking for Answers

Thursday, started off like most days, we were excited to visit with our little girl and couldn’t wait to see her.  The day started off well. When we arrived in the morning, we were told everything was status quo, but that Remy was getting a little backed up again.  To our surprise, our nurse administered Mary’s milk, which we were really hoping would stick this time around.  The day was uneventful ,and that was a good thing. That’s what we wanted.  The best part of the day….. I got to kangaroo!   Unfortunately she did  not tolerate the milk.  This was a disappointment, especially with Mary working so hard 8 times a day, hoping to help her baby.  Remy only lasted about two or three hours before they realized she was not tolerating it.

Friday Morning, Mom Z. was with us for a full day visit and a sleep-over.  The day started well.  Though, Remy was backed up, the doctors were growing concerned again.  We also learned that Remy most likely has preemie apnea, adding to her breathing difficulties. They started Remy on Neocate, a baby formula highly concentrated with amino’s and proteins.  She was on the normal .5 cc’s (barely more than a drop) per hour.  by mid-afternoon Mary got to kangaroo.  It only lasted 20 minutes.  Remy started to experience repetitive twitching again. They were pretty intense, so naturally we became concerned. We alerted the nurses, and they had to remove her from Mary, and attend to her issues.  They checked her phenobarb levels, which took about 2 hours, and decided to raise them from 29.5-35.   The twitches stopped.  We cannot be sure whether or not they were seizures.  We do know that they looked very similar to what we witnessed early on, leading to the EEG, which confirmed frequent seizures at the time.   With no EEG monitoring her brainwaves, this is something that can be missed, and it is a constant worry.

Here is how the Phenobarbital works. There is a therapeutic level in everyone’s blood.  The Phenobarb helps to control that therapeutic levels, in turn regulating, and hopefully eliminating the seizures altogether.  I don’t know what Remy’s natural therapeutic levels are supposed to be, but prior to Friday, they had them between 24 to 30.  On Friday, when she had the twitching she was at 29.5, and as I mentioned, the dosage was raised to 35.  Here is the downside. It has a sedative in it, a barbiturate.  The higher the dosage, the more sedated Remy becomes.  This lowers the activity in her brain.  She is does not move around as much as she did prior to the taking the Phenonbarb, and it’s definitely noticeable to us.  She has to be put back on the very uncomfortable and obtrusive SIPAP after becoming quite comfortable with a nasal cannula, which is much less obtrusive, and cycling with a CPAP.  With heavy sedation, Remy forgets to breathe and needs the extra help.  Something you or I would not think is possible to do, but is different in preemies.  Mary and I know this is the best way to treat it.  We are  happy that the seizures are being stopped.  Our concern is that during a time where it is essential for a preemie to grow and build strength that this will slow her down.  It’s that double-edged sword our poor Remy has to face each day.

It’s always a a gift to be with our Remy, and we grow more in love by the minute! At the same time, this past weekend was extremely tough!  The doctors are still trying to figure out what is going on with Remy, and why she is having problems with feeds.  Each and every time the doctors try to start her on feeds again, her stomach distends and she can’t poop, so they stop the feeds and continue to nourish her through I.V.s. giving her fat, nutrition, and caffeine; to compensate for the sedative.

Saturday was especially tough for me.  Remy’s stomach was very distended. They had the to stop the Neocate.  She could handle it.  The doctors are puzzled.  Starting Sunday I’m scheduled to begin working on a new reality show, which puts me in a hotel in Long Island for six days.   After 26 straight days at the hospital, it is killing me inside that I will not be spending everyday with Remy.   That’s life, we have to work.  I’m no exception to the rule, but my God, the second I got in that elevator Saturday, I lost it! Sunglasses covering my face, it was still obvious as tears ran the tears ran down my face.  I had to leave early to get things together at home. Later when Mary came home she told me about a new preemie she witnessed coming into the NICU.   Mary said she was the smallest thing she has ever seen, much smaller than Remy, and just watching the way the nurses and the doctors work there was astounding!  Things like that, make us feel that Remy is safe when we are not there.  She is definitely in the best hands.

Sunday came and went. My first day back at work was tough.  I was with a great crew, and that made it easier.  I have a new purpose in life, and its easy for me to channel that, and appreciate working even more than ever before. Mom T. also arrived to our home on Sunday from Virginia.  She has been amazing through all of this, and brought us a ton of goodies! She’s spending the week with Mary, while I am gone, and she was so excited to see her granddaughter!  After attending our close friend’s baby shower (which was difficult for obvious reasons) Mary met up with her mom and went to see Remy until the 8:00 p.m. shift change.

During that visit Mary and Mom T. learned that Remy’s condition had become a lot more concerning.  There are a few conditions that the doctors suspect she may have.  Often, it is a guessing game at the NICU, and Remy has to be checked out or tested to rule things out.  She had multiple x-rays in hope to rule out Necrotizing Enterocolitis (NEC) which is an inflammatory bowel disease. It is also suspected she may have Hirschsprungs, which is basically failure to develop a normal nerve network in the colon.  Either would require invasive surgery, but both are also considered “routine” in the NICU.  While of course we hope she doesn’t have either, we certainly want to know what is going on, and what the possible solutions could be for her.

Monday, Mary and Mom T. spent the entire day with Remy, but weren’t able to kangaroo because she needed another blood transfusion.  There were really no major changes.  While we want uneventful days, we now need changes, and they are not happening! Tomorrow Remy is scheduled for a biopsy, to confirm or hopefully rule out Hirschsprungs, and Cystic Fibrosis.  NEC is not looking likely, but is not completely off the table.  Today was probably the earliest wrap I will have  all week. So, I raced home to spend a few hours with my little girl.  I saw Mary and my mother-in-law briefly.  I got some paperwork done. I shared some hugs, kisses and tears, and got to the hospital around 9:15.

I held my little girl for about two hours.  It makes everything go away for a little while.  She makes these little sounds and these little moves.  I’m in heaven when this happens.  I’m so in love! She is chubbier, and I love it.  What a difference a day makes. Still…. she is apparently uncomfortable.  I can notice it right away.  I’m back at my hotel it’s about 2:00 am and I’m hoping to get some sleep and a good breakfast at about 7 am.  I’ll be thinking about my girls every second!  I hope today brings good things for them!

The Good, The Bad, and Did She Poop Yet?

 

It’s Monday morning.  It was a different one for Mary and I.  I was flat out exhausted and overwhelmed with things piling up. I stayed at home to work for a bit, while Mary went to her OBGYN for a check up.  She was so busy last week that she forgot she has been through a lot too, and should probably make sure she’s doing all right.  She is.  She got to the hospital in the afternoon to get a ton of news from the doctors.  Remy had had some trouble breathing in the morning.  She was taken off nasal cannula and put back on SIPAP early that morning.  This happens with preemies, but we haven’t gotten used to it yet.  Sometimes they just forget to breathe, and you have to startle them, and in this case give them more assistance to remind them to breathe.

The residents also told Mary that Remy had a temperature, and may have possible fungal infection.  Her temperature was up to 100.3.  Normally when she has a temperature, it is below 98.7, which is more typical of preemies.   This is a pretty big concern as our residing physician later told us.  When a preemie’s temperature rises and it is not treated right away it could result in death.  On the flip side, NICU personnel are so on top of these things and catch them right away and it is very rare I assume in any NICU for that matter that a temperature is not recognized and treated for immediately.  Another round of blood work, and a second spinal tap was necessary.  In the meantime, she was immediately put on an on antibiotic called Abelcet, which should eliminate any fungal infection should there be one. Mary called to download me and I couldn’t stay home any longer, I headed to the hospital.  The doctors were finishing the spinal tap as I arrived, so I waited with Mary in the family room, then spent the rest of the afternoon with Remy.   Mary was still able to Kangaroo.  I sat with them, hoping for the best for Remy as always.

Tuesday morning we arrived at the hospital to find that Remy’s temperature was down and she was doing great, besides the fact that she still can’t poop without a suppository.  Preemies aren’t supposed to know how to go on their own, they don’t have ab muscles or know how to push.  But for some reason Remy isn’t able to go at all, which could mean a blockage in her colon or intestines. She was taken off of the feeds and a procedure was scheduled for Wednesday morning.  The rest of the day was pretty relaxed, as relaxed as you can expect the NICU to be.  I was able to Kangaroo with Remy for a few hours, while Mary pumped as usual.  We watched her relax in her incubator and headed home for the night hoping for good results tomorrow.  We went home thinking positive!

On Wednesday, Remy had a tough morning, and so did Mom and Dad.  When we got in, we expected her to be whisked away at any moment for a barium enema.  We had no idea that we would be able to come along for the procedure, which of course we did.  As I mentioned, she had been having problems in the restroom area and the attending doctor wanted to check and make sure there were no blockages in her colon.  Poor thing is 21 days old and already has to have an enema.  It was a pretty hardcore morning for my little girl.  To watch the process, well lets just say wanting to switch places with her was at a maximum.  Most of the time in the NICU the babies are kept in or near their incubators, and they are only moved if they have to be.  Doctors will even do surgeries right there in the NICU.  Moving the babies is very traumatic for them, especially if they are getting breathing assistance, as Remy is.

The doctors had to change her from CPAP to SIPAP while manually pumping her in between in order to get her down to the radiation floor for the test.  Remy did not like this at all!  It took some time to even get the correct size to fit her face, as she is still just a little nugget.  Later in the radiation room, we came to find out that she was also pretty clogged up in her nostrils.  That made it harder for her for her to breathe.  She was a tough little one and made it through, but not without a fight.  She was throwing punches the entire time, with fists clenched. I kid you not!  It turned out, she was all clear of any major blockages and the doctors didn’t find anything alarming. Sigh of relief!  Later in the day she proved how good she was doing by pooping on her own, and it was a good one.  I mean projectile!  I never though I would say this, but Mary and I have never been so proud.  If that was too graphic, well….. I’m sorry, but this is really good stuff for Remy! Ultimately despite our morning it was a great day.  While at the NICU, I admittedly spent most of my day working, even holding a business meeting in the lobby while Mary kangarooed.  Nothing makes me feel better than to round the corner and see my sweethearts together.  Mary got to Kangaroo with Remy for almost 3 hours, and I don’t think the smile ever left her face.

We are hoping she can tolerate the feeds that she will resume today (Thursday), gain some weight and be able to digest the .05 cc’s of formula she gets each hour and go to the bathroom on her own.  In fact, she may be taking another stab at her Mom’s milk today!  Even though Remy went to the bathroom numerous times yesterday and throughout the day today, she gained 30 grams and weighs a whopping 1210 grams, which is 2.6 lbs.  HUGE!  Mary says she will change diapers proudly all day.  Not to be stereotypical to all of my women readers, but I’d be lying if I didn’t say, “I am perfectly okay with that.”  Don’t worry; I’ll be getting in my fair share as well.  I’m not afraid to get my hands dirty, pun intended.   We’re still waiting on results regarding a possible fungal infection, but so far all available results from blood urine and spinal tap have been negative.  We will know more tomorrow and hope for more negative results.  It’s only Thursday and it’s been a rollercoaster of a week, but we’re smiling today, and that’s wonderful.

I want to thank Donna and Allison for creating “Help for Remy” on Facebook, we feel so loved and words will never describe how grateful we are to everyone who is supporting us through this time.  It is so nice to know that through the years we are all still connected, regardless of how long it has been, and we are truly grateful for all of your friendships.  All of you and all of your words give us so much hope and help keep us positive.  We had a great day at the NYU Blood bank too.  Props to Dave Simone who brought almost his whole office to donate blood for Remy and to Kelly and Marty and all of those who are making their way over to donate too.  Remy thanks you!

Here are some pics from this week, She’s getting bigger everyday.  The nurses tell us that first she gets cheeks on her face, then her butt cheeks fill in and then come thighs!  Our close friend Brenda gave Mary a tiny giraffe while she was in the hospital, and we gave it to Remy and are going to take pics with it all the time, so show how much she is growing.  Enjoy!

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Weekend Stretch

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!