Setbacks as Promised

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!

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4 thoughts on “Setbacks as Promised

  1. Thinking about you & baby Remy. Sounds like she is a fighter & she will pull through & will be stronger because of it!

  2. Remy is in good hands over there so try to remain focused on providing her (and each other) love and support while you go through this. A Zappulla she is for sure. Sending love, hugs and many prayers. Stay strong!!

  3. I am always thinking of you all and sending love, strength and good thoughts to my favorite friends and my new favorite baby girl. Your right, she is a Zappulla and is a rockstar and will get stronger each day. Mihai also sends his love, strength and positivity from oklahoma. We love you all so much.

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