It’s Wednesday morning, Mary and I both woke up refreshed.   We had a short, but nice breakfast at the table…….together.  Oatmeal with sliced bananas, orange juice and green tea for me.  Scrambled eggs and soda bread with chocolate milk for Mary.  Jake was meowing as usual, waiting for some table scraps. Despite yesterday, we were smiling and ready to see our little Remy.  Everyday is a new day, and we have so much to be thankful for.

Mary noticed she received a voice mail, while in the shower.  It was Dr Wachtel, the attending doctor at the NICU for the month of March.  She said that they were going to be changing up Remy’s management, and wanted to speak to us about it before we came in.  We called back and left a message and were immediately in the car and on our way.  We received her call back on our way there.  After a brief discussion, we told her we would be there in a few minutes.  On the drive, she informed us that it was discovered overnight that our Remy was experiencing seizures.  My foot immediately became much heavier  and Mary and I clinched our hands together as if we were holding one another from a falling building.

We arrived visibly concerned.  We were approached and consoled by several doctors and nurses upon arrival.  We visited with our baby right away and spoke to a few different personnel, but couldn’t get any straight answers as to exactly what was going on or how serious it was.  It wasn’t anything they did wrong.  They were extremely empathetic and concerned.  It’s just protocol.  They cannot comment on certain questions, especially with sensitive issues.  Though, it was a dead give away, that there was reason for serious concern.

Soon after, we went into a meeting with Dr Wachtel, along with another doctor and a social worker, Lisa who has been very understanding and consoling to us throughout the past few weeks.  During the meeting, we were informed of some very uneasy news.   Our baby was, and still is experiencing seizures very frequently, both clinical and non clinical.  Remy also has a small blood clot in her brain near the cerebellum.   The clot is about .8 centimeters, which thankfully is not that large.  As I understand it, she experienced a hemorrhage at birth.  The good news is that we do know that her clot has gone down considerably, and the blood is dry.  We hope that it will dissipate and no brain damage has, or will occur.  Sill there is no conclusive evidence either way right now. On top of all this, Remy’s white blood cell count has not changed.  Again, as I understand it, this is due to a bacterial infection which they have been treating with antibiotics since Monday.    She has been on  Vancomycin and  Cephalexin.   She will remain on the Vancomycin, but the  Cephaliexin will be  replaced with  Zosyn (a combination of penicillin and tazobactam)  in efforts to fight off the bacteria and get the white blood cell count up.

Remy is being administered Phenobarbital,  an anticonvulsant used in attempts to control and eliminate seizures.  It has a sedative in it, which makes her very sleepy and reduces her activity quite a bit.  So she has to go back and forth with the CPAP  to help her breathing for now.

At the moment, we are extremely concerned and trying our hardest to remain positive.  While we know she is experiencing seizures quite often,  there are many questions to be answered. In order to get the best conclusive results, and get the most detailed evidence of what she is going through, she will need an MRI.   This cannot happen until she is 36 weeks.  Preemies are too fragile to handle the MRI’s, which can cause other problems on their own.  Our baby is only 30 weeks.

The risks range from very serious risks, which I don’t care to mention at the moment, to the possibility of no ill effects at all.  It could mean that she will need treatment and medication for several years to come, even if the seizures are controlled and cause no damage.  The uncertainty is terribly difficult to cope with.  The doctors are doing there best,  at the same time we understand that they cannot comment on outcomes or severity.  Right now our doctors will remain in close connection with Neurology, as will we.  I naturally, along with Mary ask many questions, and surf the web for answers and explanations.  We have been told that seizures in preemies are common.  However, we were also told by Dr. Wachtel that Remy’s diagnosis is uncommon.

Our concern level has elevated tremendously.  Our love will only keep growing, day by day, minute by minute.   We will do our best to approach this positively and keep our faith in the people at the NYU NICU who are caring for our precious little rock star.  For now, we know we will just have to rely and the experts we are surrounded with and keep a positive attitude.  We will enjoy holding our baby as often as possible, give her lots of love and contact  and continue to do everything within our power to help our Remy.  We ended off the day on a good note.  Remy got to spend two hours laying on Mary’s chest, and she did very well!  She even rubbed Mommy’s chin.  It was the cutest thing ever!

She is a Zappulla and that alone gives me confidence she has the strength to overcome anything!   Please check out my girls in the pic below.  I’m a lucky Man!

As of Monday morning, Remy had to undergo some very uncomfortable testing.  My God!  As a new mother and father, it was just difficult to see our little girl go through what she did.   One of the NICU doctor’s approached us Monday morning to discuss her most recent blood test results.   They found what was thought to be, and later would turn out be a bacterial infection.  She explained, that they were immediately going to administer her two antibiotics, Vancomycin and Cephalexin, for precautionary measures, and proceeding that further testing would be done.

As a result of the results found, Remy would  need to forgo several uncomfortable tests.  More blood and urine tests would be need to be taken.  This involved the use of a catheter, which fortunately drew urine in one attempt, but Remy was certainly not happy about it.  The next test was a spinal tap.  That was scary.  Our, 2 lb., 13 day old girl was getting a spinal tap.  I was not allowed to observe this.  She had to be curtained off in a  sterile environment.

I try to be there for every procedure.  I’ll hold her hand, talk to her, and just do my best  to make sure that I know what she is going through.  I’m not sure that it helps, but I think that it does.  It’s not like I’m really thinking about much else these days, but I want that harsh, hands on reminder of what she is going through.  It is important that I’m there for those things, not just to understand the science of it, but more importantly, to understand (as much as possible) what my baby is going through.    I like to believe that I am comforting her through this, even if it’s just a little bit.  Eventually I want her to get the feeling that Daddy will always be by her side through good or bad, even if she has no idea who I am yet.  Let me just add,  I write these post from my perspective, but I cannot say enough about how great Mary has been.  It is something special to watch your wife instantly become maternal and bond with her daughter.  I’m so proud of her!

Getting back to what’s going on.  That was Monday.  Tuesday morning, when we arrived at the NICU, we got there early enough for rounds. We listened in on the reports.  As usual, we were welcomed into the circle, and although we cannot understand the clinical terms, they do their best to put everything in laymans terms for us.  Remy did well overnight.  Her vitals were fine.  Her white blood cell counts were still down, as they were on Monday, which is directly related to the bacterial infection. They would be keeping her on the same antibiotics and later in the day they would be sending in someone from neurology to ask questions.   Following that, an EEG would be set up for overnight monitoring.

I was going to be kangarooing with her today, so I was naturally excited.  After rounds, I was off to the dentist for two quick fillings.  I came back not being able to feel my mouth for 3 hours and took some relax time, kangarooing with Remy in my arms.   It was different from the previous two times.   She was twitching intensely and often.   It was disturbing.  I was scared!  I alerted the nurses and doctors, as both Mary and I have been doing since Monday.  The nurses, kept checking, and as I mentioned in my previous post, we were also told by other parents that their preemies went through the same thing.

A neurologist came by to check on her while I was kangarooing.  Of course Remy just had an intense series of twitches immediately before he arrived, and immediately after he left, but nothing while he was present.  How frustrating!  Have you ever been in a deep sleep, and all of a sudden, you wake up to a sudden jerk, as if you are falling off the bed?  That is what it is looks like when she twitches, except that it happens repeatedly, sometimes about 20 or 30 times in a row. You try to stop it, but you cannot.

Another neurologist arrived around 6:00 PM to set up the EEG.   Mary had to go pump, and I stayed with Remy.  The neurologist wiped Remy’s head down and began to attach several leeds to her head.  It was amazing how well Remy did during this.  She clinched onto my finger with her hand the entire time.  We did the left side of her head first and then turned her over to do the right side.  The smell from the glue was very strong. It had to of bothered her, as even I was having a tough time with it.   It took about 20 -30 minutes and the process was done.

Mary was back from pumping on the tail end of it attaching the leeds.  After that, I stepped out for a moment to the family room.  Mary and our nurse Jen cleaned her up changed her diaper and redressed her bed.  Jen has been teaching us the past few days how to do these things, and Mary has been all hands on (Jen also took our first family picture today which you can see below)!  Mary came into the family room afterward and told me that Remy was finally fed up.  She was swinging, punching and kicking as if trying to say,  that’s enough!

We had a rough day, but our day was nothing compared to Remy’s.  She was pretty beat!   After the action filled day she experienced, it was time for some well needed rest.  We thought about staying over night, but Remy was just going to be kept under a blanket and left to sleep for the evening.   We figured it was best to go home as usual, get some rest, and hope Remy was able to do the same.

After picking up Remy’s new stroller at Babies R Us, we arrived home about  9:00 pm.  I caught a rare glimpse of my Islander’s going into another habitual OT game  which they actually managed to win, while Mary took a hot shower.  We just wanted to sit and experience a moment of relaxation for a bit, but I’m not sure that is even possible right now. We watched some TV, ate on the couch, and went to bed .  The past two days were pretty tough.  Remy has really had to put up with some serious trauma. We are hoping for a better day tomorrow!

Below are some tough pics to look at it.  You’ll see Remy with her leeds on and under diress, but we hope you enjoy some of them put a smile on your face, like Mary  being a great Mom and cleaning Remy’s lips, our first Family photo together, and me holding my baby girl.

It’s still Sunday, I just felt this topic deserved it’s own post.

I was taken completely off guard on Wednesday.  Just after saying goodbye to Mom T. (who we miss so much), our amazing nurse Jenn asked if we wanted to “Kangaroo” Remy….…. Yep, okay.  Wait HUH!?

Kangaroo care is a technique practiced on newborn, usually preemies, infants wherein the infant is held, skin-to-skin, with an adult. Kangaroo care seeks to provide restored closeness of the newborn with mother or father by placing the infant in direct skin-to-skin contact with one of them. This ensures physiological and psychological warmth and bonding. The kangaroo position provides ready access to nourishment. The parent’s stable body temperature helps to regulate the neonate’s temperature more smoothly than an incubator.

Translation; we get to hold Remy!!!!!!!!

This was the greatest thing I have ever done, Ever!  Mary would tell you the same.  Mary did it first, since, well, she’s the Mom. Remy just chills out on our chests and grabs our finger, cries a little in the beginning, which sounds more like a squeak or a high pitched whimper.  Sometimes she hiccups and twitches after getting settled in and she just sleeps and stretches on you.  I am happy to be her kangaroo any day, any time!  I go back and forth trying to figure out whom this benefits more.  Mary and I, or Remy?

Here is what a millisecond thought is like for me while this is happening:

Wow, you have changed my life. I am so lucky to have you. I will do everything in my power to give you the best life. You just tickled my belly with your miniature toes. I have a new purpose in life. I better not move too much.  I hope my singing isn’t scaring her for life.

Remy’s thoughts:

Aaaahhh, warm comfy bed!

We have switched taking turns kangarooing, everyday since Wednesday.   Today was pretty scary though.  Remy was twitching like crazy with spasm-like movements.   Both Mary and I were very worried.  We spoke to our nurse and she got the doctor for us.  He did not want to interrupt kangarooing, as it is so beneficial to Remy.  He said her vitals were okay and he would check more thoroughly after she was back in the incubator.

It was very concerning, because we read that preemies can be known to experience seizures, and even if she is fine, it is just plain hard to watch.   Turns out she is fine.  We spoke to some other moms and dads at the NICU and they reaffirmed  that their preemies went through the same thing.   I’m sure I would twitch, if I had all these things attached to me.

Today’s biggest payoff!   I was able to do something I have been dying to do for almost two weeks now.   I KISSED MY BABY GIRL FOR THE FIRST TIME.  I had chills.

Below are some pics of us kangarooing.

It’s Sunday.  We have gotten into the routine of being at the NICU everyday with Remy.  We just purchased a monthly spot in the garage across the street.  Our body clocks are starting to adjust to the new routine.  Still, sleep is a luxury.  I’m back on ambien, my old friend that I was hoping not to get reacquainted with.

My Dad has been hanging out with us today.   He is heading back to Florida tomorrow for a week or two and has a few doctor appointments to attend.   We’ll miss him, he has been a great help to us, and it’s awesome that he comes and hangs out with his first grandkid every few days!

One thing I didn’t mention in my last post, was that on Tuesday, as soon as Mary and I arrived, we noticed that Remy’s skin color was looking so much healthier.  She was starting to get a pinkish, tannish hue.  Her color looked almost identical to mine.  We were very excited.  Just after noticing that, I was told that Remy needed to get a blood transfusion later in the day.  Remy’s blood cell counts and platelets were low, on top of always getting blood drawn throughout the day.   So, the transfusion was more reassuring than scary, but nonetheless scary that it was needed.   We were told not to be too concerned.

I knew this was a possibility, so I gave blood at the blood bank the day after my arrival, and luckily they were able to use it.  After donating, when Mary was still in ICU, I casually mentioned that I should have asked them my blood type, and Mary, her mom and her sister all said, “What!” simultaneously.  I guess that was part of Taylor 101 growing up.  Don’t worry Mom, I’ll never forget again. I’m B-.  Anyway,  I just think it’s the coolest thing that I was able to be the donor for Remy!  Thanks so much to my friends and family who also donated for Remy.  Your blood will not be wasted. It will go to others in need.

Mission Milk: Mary has been a pumping machine!  At least every 3 hours (8-10 times a day).   We store the milk that she pumps in little freezer bags at home and in the NICU.  She pumps, I write.  She has a home and a hospital routine.  She likes pumping and chatting it up with the other moms in the NICU.  It is therapeutic for her to have others sharing similar experiences.   I’m just glad I don’t like milk because I’m a late night eater who likes to rummage through the fridge and the freezer and there’s no telling what I’ll eat, half asleep, at 4 am.

On Thursday we were finally able to put some of the milk to use.  Remy received 5 CC’s of milk , and we were excited for her first real food.   Similar to my emotions with the blood transfusion, Mary was very proud.  Unfortunately, on Friday they had to cease it  because she was not digesting it well, but hopefully that will change soon.  It’s okay though.  This may take some time and several attempts before her body is ready to break down Mom’s milk comfortably.

Other than that, Remy is doing very well.  They changed her SiPAP to a CPAP (these are the tubes that is attached to her nose).  These machines are often used for sleep apnea and a common aid for preemies.   While Remy has been breathing on her own for most of the week now, the SiPAP kept her lungs inflated, while she breathes in and out. The CPAP also keeps her lungs inflated, but only when she breathes in, not out.   This is a sign that her breathing and overall strength is continuing to get better.  The CPAP aids Remy in a way that helps her breathe more effortlessly.  It helps her keep to a more rhythmic breathing tempo, and it will keep getting decreased until she doesn’t need it anymore.  Think of it as a musician using a pendulum that ticks, helping one to follow the beats, while learning to play an instrument.

Everything is a slow and eventual process for a preemie.   The things that she would have developed in the womb now have to be learned through machines, human contact, and so forth.  It’s really so amazing how medical methods are always advancing.

Mentally, we are doing as well as we can.  Being home without our baby is becoming even more difficult.  Being there is comforting, but now she is usually covered with a blanket over the incubator.  This is good for her, helping her sleep, aiding her development and keeping a dark environment, as she would have in the womb. We sneak peaks and stick our hands in there as often as possible without interrupting her rest time.

Enjoy these pics of Remy, Remy with Mom T., and Mom’s Milk.